Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Questions

Rate this topic

Recommended Posts

Guest guest

Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the

dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Share this post


Link to post
Share on other sites
Guest guest

" Thanks Matt, you are so sweet. I hope you get to on your trip.

Love ya,

Marla

Re: Re: Questions

> >

> > mine is on the right side of my head and it doesnt

> > seem to be related to my eye pain Matt

> >

> > --- mosaicgirl1 mosaicgirl1@...> wrote:

> >

> > >

> > > Matt and Connie:

> > >

> > > I also get the pain in and around the ear. It

> is

> > on the same side as

> > > my facial pain and eye pain. Is your pain all

> on

> > the same side? Mine

> > > is on the left.

> > >

> > > Terri

> > >

> > > >

> > > > > Hi Everybody, Hope everything is going ok

> with

> > > you

> > > > > all.

> > > > >

> > > > > I have a question if you don't mind. I have

> > had trouble off and on

> > > > > with an unusual pain mostly

> > > in

> > > > > the right side of my head above my ear. 2 of

> 3

> > times this pain has

> > > > > felt like someone stuck a 38

> > > to

> > > > > my head and pulled the trigger, the only

> thing

> > > that

> > > > > I imagine would be different was it took a

> > while

> > > for

> > > > > the pain to stop, and the very last time

> this

> > happened it felt

> > > > > like something went up my

> > > carotid

> > > > > to my head, dummy here even tried to catch

> it

> > > before

> > > > > it got to the top. I have also had this

> funny

> > > jab

> > > > > in my head off and on for a while, but

> usually

> > > they

> > > > > are spaced out pretty good. All of a sudden

> > this has changed in

> > > > > the last 2 weeks, the pain has started

> coming

> > more often. I get a

> > > > > less severe pain almost always in the same

> > spot as the other that

> > > > > feels like someone is trying to push

> > > something

> > > > > through my head, it hurts like the dickens

> but

> > doesn't last as

> > > > > long as the other, the

> > > difference is

> > > > > it has started making me dizzy and nauseous,

> > > which

> > > > > lasts for 20 or 25 minutes even though the pain has stopped.

> > > > > It's never done

> > > that

> > > > > before. What is this? Any ideas?

> > > > >

> > > > > I know you guys are not doctors, but I trust

> > > your

> > > > > answers more. You have been there and seem

> to

> > understand the weird

> > > > > way I ask a question. Sorry about that by

> the

> > way.

> > > > >

> > > > > As always//Connie

> > > > >

> > > > >

> > > > > --------------------------------- How low

> will we go? Check out

> > > > > Yahoo!

> > Messenger's

> > > low

> > > > > PC-to-Phone call rates.

> > > >

> > > >

> > > >

> > __________________________________________________

> > > >

Share this post


Link to post
Share on other sites
Guest guest

I get this pain too, the vessel in

my head just pounds, and is painful, I find that Aspirin helps me the most, I

usually get it at the end of a long day, and when I do too much.

But you should get it check out, I

am going to my “Sarcoid” doctor today, I need to make a list so I

don’t forget what to say, I try to get my husband to come, but always too

busy, oh well I’m taking a clip board so I can make notes, as the head

has started again, with pain, brain farts, and the worse getting lost and the

feeling of lost, the body is still 90% pain free, praise God, and the energy

level is still up, praise God, the rest will come, just takes time and I’m

not good at that, like all of here we want it fixed now, but know that now to

the doctor is years, if we are lucky.

I wish you all a pain free, beautiful

day, with much love.

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Wednesday, May 17, 2006 11:59 PM

To: Neurosarcoidosis

Subject: Re: Questions

In a

message dated 5/16/06 4:58:50 PM Pacific Daylight Time, conaugusta@... writes:

I have had trouble off and on with an unusual pain mostly in

the right side of my head above my ear. 2 of 3 times this pain has felt

like someone stuck a 38 to my head and pulled the trigger, the only thing that

I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my

head,

We do have a " temporal artery " that is in the area

you're talking about. If you wear glasses, the temporal artery is

directly under the temples of your eye glass frame.

It is possible to get strokes or blood clots in this artery, and if a clot does

happen-- vision loss is possible.

If you have high cholestrol levels, many times this shows up in this artery

before it shows anywhere else. (You also get a " ring " around

the iris of the eye-- that is cholestrol.)

For those of us on steroids- or have a history of pred useage, it's important

to watch for these signals-- as they can be signs of more serious

problems. Also the trigeminal nerve runs up that meridian--- so it may be

that.

Get it checked out, a simple doppler test done by the ophthalmologist or

neurologist along both the cartoids and the temporal artery can be helpful.

Blessings,

Tracie

NS Co-owner/moderator

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Share this post


Link to post
Share on other sites
Guest guest

I get this pain too, the vessel in

my head just pounds, and is painful, I find that Aspirin helps me the most, I

usually get it at the end of a long day, and when I do too much.

But you should get it check out, I

am going to my “Sarcoid” doctor today, I need to make a list so I

don’t forget what to say, I try to get my husband to come, but always too

busy, oh well I’m taking a clip board so I can make notes, as the head

has started again, with pain, brain farts, and the worse getting lost and the

feeling of lost, the body is still 90% pain free, praise God, and the energy

level is still up, praise God, the rest will come, just takes time and I’m

not good at that, like all of here we want it fixed now, but know that now to

the doctor is years, if we are lucky.

I wish you all a pain free, beautiful

day, with much love.

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Wednesday, May 17, 2006 11:59 PM

To: Neurosarcoidosis

Subject: Re: Questions

In a

message dated 5/16/06 4:58:50 PM Pacific Daylight Time, conaugusta@... writes:

I have had trouble off and on with an unusual pain mostly in

the right side of my head above my ear. 2 of 3 times this pain has felt

like someone stuck a 38 to my head and pulled the trigger, the only thing that

I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my

head,

We do have a " temporal artery " that is in the area

you're talking about. If you wear glasses, the temporal artery is

directly under the temples of your eye glass frame.

It is possible to get strokes or blood clots in this artery, and if a clot does

happen-- vision loss is possible.

If you have high cholestrol levels, many times this shows up in this artery

before it shows anywhere else. (You also get a " ring " around

the iris of the eye-- that is cholestrol.)

For those of us on steroids- or have a history of pred useage, it's important

to watch for these signals-- as they can be signs of more serious

problems. Also the trigeminal nerve runs up that meridian--- so it may be

that.

Get it checked out, a simple doppler test done by the ophthalmologist or

neurologist along both the cartoids and the temporal artery can be helpful.

Blessings,

Tracie

NS Co-owner/moderator

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Share this post


Link to post
Share on other sites
Guest guest

I get this pain too, the vessel in

my head just pounds, and is painful, I find that Aspirin helps me the most, I

usually get it at the end of a long day, and when I do too much.

But you should get it check out, I

am going to my “Sarcoid” doctor today, I need to make a list so I

don’t forget what to say, I try to get my husband to come, but always too

busy, oh well I’m taking a clip board so I can make notes, as the head

has started again, with pain, brain farts, and the worse getting lost and the

feeling of lost, the body is still 90% pain free, praise God, and the energy

level is still up, praise God, the rest will come, just takes time and I’m

not good at that, like all of here we want it fixed now, but know that now to

the doctor is years, if we are lucky.

I wish you all a pain free, beautiful

day, with much love.

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Wednesday, May 17, 2006 11:59 PM

To: Neurosarcoidosis

Subject: Re: Questions

In a

message dated 5/16/06 4:58:50 PM Pacific Daylight Time, conaugusta@... writes:

I have had trouble off and on with an unusual pain mostly in

the right side of my head above my ear. 2 of 3 times this pain has felt

like someone stuck a 38 to my head and pulled the trigger, the only thing that

I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my

head,

We do have a " temporal artery " that is in the area

you're talking about. If you wear glasses, the temporal artery is

directly under the temples of your eye glass frame.

It is possible to get strokes or blood clots in this artery, and if a clot does

happen-- vision loss is possible.

If you have high cholestrol levels, many times this shows up in this artery

before it shows anywhere else. (You also get a " ring " around

the iris of the eye-- that is cholestrol.)

For those of us on steroids- or have a history of pred useage, it's important

to watch for these signals-- as they can be signs of more serious

problems. Also the trigeminal nerve runs up that meridian--- so it may be

that.

Get it checked out, a simple doppler test done by the ophthalmologist or

neurologist along both the cartoids and the temporal artery can be helpful.

Blessings,

Tracie

NS Co-owner/moderator

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Share this post


Link to post
Share on other sites
Guest guest

Eileen, I agree with you and would add one thing. Jeanne, you said that you didn't want to mention the numbness & tingling in your feet until it got worse. This may be an early sign of neuropathy. It's possible that early recognizition & treatment might prevent or at least delay severe damage & pain. My neuropathy started out with intermittent feelings that pieces of tape were stuck to my feet. Months later, when I had constant numbness & burning, I told my neurologist. I don't know if something could have been done earlier, but these docs need to know our symptoms! In time, more effective treatment will be developed & this all needs to be documented.

BTW, I looked up Namenda, and it's also being used for migraine & tension headaches. Only small studies or anecdotal stories, of course it's off-label & not FDA approved for this, but still sounds promising. And remember, there are countless drugs prescribed for non-FDA approved purposes, including several drugs used routinely for preterm labor.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: QuestionsDate: Sat, 27 May 2006 05:09:18 -0700 (PDT)

Jeanne,

Tnis is Eileen and I am new to this site. i am replying instead of sending a new mail because I am still trying to figure out who sent which email. I am not as quick as I used to be.

If you have a Doctor who is not sympathetic to your needs, you need a new doctor. Don't mess around with that kind of stuff. Do you live in an area that has more than one?

Before your visit, as you exhibit symptoms throughout the month, write them down. If you are like me you will forget some of them by the time you get to the office. Take the notepad with you.

No one should have such bad pain, and a health care provider is required (not the word I am looking for) to try to relieve your pain.

I don't know how old you are but I had a hysterectomy and all my headaches went away. (Now some of you might say in more ways than one) but if you are experiencing some kind of migraine which I was, I never had another one. It also relieved all the pain in the abdomen and legs from the periods.

Then the Doctor needs to do some serious testing regarding your Sarcoid. Perhaps he has already. My Sarcoid has been limited to the peripheral nervous system. I have just recently started to have focal siezures but when they were doing the initial workup they did a spinal tap, an EMG of the nerves, and then they did a biopsy of the nerves in my legs.

Now I was sent to several specialists along the way who had different ideas but at least they were all doing something.

Anytime a doctor doesn't take you seriously, ask him if he is working for money or not!

I found that I could tolerate the pain in my feet and legs better than the pain in my arms and hands once it reached there I had to have releief!

I use a Duragesic Patch, Lyrica, Prednisone and Paxil. I use Vicodin for breakthrough pain. I only use the vicodin once or twice the night before the patch is to be changed. So it works. Now I am on a lot of othe meds but I think those are the ones that control the pain. I was on Neurontin and that worked for a long time, he just wanted to try the Lyrica to see if the Neurontin was contributing to a side effect that I was having.

I also take Namenda for the memory loss. It is for Alzheimer's but it works. I feel better.

I hope you feel better and I hope the neurologist takes good care of you.

Eileen

Jeanne Betters wrote:

Hi Debbie!

They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now.

How are you doing?

Hugs,

Jeannie

Debbie wrote:

Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote:

Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;)

Hugs,

Jeannie

Connie Griffis wrote:

Jeanne,

Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions.

As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt.

Thanks again///ConnieJeanne Betters wrote:

Hi Connie -

Sorry this is a little late. I've been offline for a little while.

When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one.

I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!!

You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs,

JeannieConnie Griffis wrote:

Hi Everybody, Hope everything is going ok with you all.

I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas?

I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way.

As always//Connie

How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates.

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice.

__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Eileen, I agree with you and would add one thing. Jeanne, you said that you didn't want to mention the numbness & tingling in your feet until it got worse. This may be an early sign of neuropathy. It's possible that early recognizition & treatment might prevent or at least delay severe damage & pain. My neuropathy started out with intermittent feelings that pieces of tape were stuck to my feet. Months later, when I had constant numbness & burning, I told my neurologist. I don't know if something could have been done earlier, but these docs need to know our symptoms! In time, more effective treatment will be developed & this all needs to be documented.

BTW, I looked up Namenda, and it's also being used for migraine & tension headaches. Only small studies or anecdotal stories, of course it's off-label & not FDA approved for this, but still sounds promising. And remember, there are countless drugs prescribed for non-FDA approved purposes, including several drugs used routinely for preterm labor.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: QuestionsDate: Sat, 27 May 2006 05:09:18 -0700 (PDT)

Jeanne,

Tnis is Eileen and I am new to this site. i am replying instead of sending a new mail because I am still trying to figure out who sent which email. I am not as quick as I used to be.

If you have a Doctor who is not sympathetic to your needs, you need a new doctor. Don't mess around with that kind of stuff. Do you live in an area that has more than one?

Before your visit, as you exhibit symptoms throughout the month, write them down. If you are like me you will forget some of them by the time you get to the office. Take the notepad with you.

No one should have such bad pain, and a health care provider is required (not the word I am looking for) to try to relieve your pain.

I don't know how old you are but I had a hysterectomy and all my headaches went away. (Now some of you might say in more ways than one) but if you are experiencing some kind of migraine which I was, I never had another one. It also relieved all the pain in the abdomen and legs from the periods.

Then the Doctor needs to do some serious testing regarding your Sarcoid. Perhaps he has already. My Sarcoid has been limited to the peripheral nervous system. I have just recently started to have focal siezures but when they were doing the initial workup they did a spinal tap, an EMG of the nerves, and then they did a biopsy of the nerves in my legs.

Now I was sent to several specialists along the way who had different ideas but at least they were all doing something.

Anytime a doctor doesn't take you seriously, ask him if he is working for money or not!

I found that I could tolerate the pain in my feet and legs better than the pain in my arms and hands once it reached there I had to have releief!

I use a Duragesic Patch, Lyrica, Prednisone and Paxil. I use Vicodin for breakthrough pain. I only use the vicodin once or twice the night before the patch is to be changed. So it works. Now I am on a lot of othe meds but I think those are the ones that control the pain. I was on Neurontin and that worked for a long time, he just wanted to try the Lyrica to see if the Neurontin was contributing to a side effect that I was having.

I also take Namenda for the memory loss. It is for Alzheimer's but it works. I feel better.

I hope you feel better and I hope the neurologist takes good care of you.

Eileen

Jeanne Betters wrote:

Hi Debbie!

They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now.

How are you doing?

Hugs,

Jeannie

Debbie wrote:

Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote:

Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;)

Hugs,

Jeannie

Connie Griffis wrote:

Jeanne,

Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions.

As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt.

Thanks again///ConnieJeanne Betters wrote:

Hi Connie -

Sorry this is a little late. I've been offline for a little while.

When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one.

I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!!

You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs,

JeannieConnie Griffis wrote:

Hi Everybody, Hope everything is going ok with you all.

I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas?

I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way.

As always//Connie

How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates.

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice.

__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Eileen! Thank you so much for writing - I really REALLY appreciate your thoughts! I did actually bring a list of symptoms for my neurologist a couple of weeks ago. He made me read them to him and then he just waived his hand like he wasn't worried about it. I asked him if he wanted it for my file and at first he said "no" but then took it. He aggravates me to no end. I did get in touch with from PA's neurologist's office, which lead to a phone call to my health insurance provider, which lead to the wonderful revelation that now that I have a diagnosis, I can go to as many different neurologists as I want as often as I want for as many opinions as I want! Isn't that WONDERFUL!? Anyhow, I had an appointment scheduled, but the morning of the appointment one of my dearest friends showed up at my front door at just before 7:00 in the morning - there had been a tragic, unexpected death in

the family. Needless to say, I have rescheduled and plan to see the new doctor soon. I actually can't wait! I am very, very VERY discouraged by doctors. I can't help thinking that if I had had this disease when I lived back in Rhode Island, my medical care would have far surpassed the situation I have encountered here in PA. (We're just outside of Pittsburgh... And I'm >gulp< 40.) Anyhow, the doctors have told me that the granuloma in my brain probably has something to do with why my body started early menopause - lovely, lovely, lovely. I'm wondering if you are right - if the awful headaches have something to do with that. I'll have to watch better next time and make note of everything! Thank you! They did have me on Neurontin for a while, too.. but it didn't work for me. I cannot for the life of me remember why, but I know there were

several months that they played around with my meds (both my regular physician and my neurologist kept changing them on me). Our pharmacist called me one afternoon, extremely alarmed because he had called the neurologist who had me on some meds that I had had a bad reaction to. . . The neurologist just kept telling him to put me on this or that, and the pharmacist kept responding, letting the Neurologist know that I had been on this or that before and why they took me off. Finally the pharmacist called me personally and highly recommended I discuss the situation with my family physician before taking any new meds. Needless to say, that, among other things, really REALLY made me lose confidence in my neurologist. So, I looked for a new one. Now it's the waiting game to get in. Very very frustrating. The thing is, locally, my neurologist is known as "boy wonder" (he's

in his late 50's), and he apparently was part of the original NS case studies, I guess? So everyone who knows anything here recommends him. I think he's an idiot. Big deal. I've learned the hard way that just because someone's name shows up on a certificate or degree or in a study, that doesn't mean they're an expert. I'll be happy to be out of his care, I assure you! :) As far as outside specialist testing, he sent me for a nerve conduction test (?is that what it's called?), and the doctor told me I have carpal tunnel. Uh, duuuh! But that doesn't explain anything else. He only tested my hands and wrists, so I honestly don't know what else that is supposed to tell him. I really am hoping the new neurologist will have more insight and more desire to pursue help for me. Now, as far as memory

loss, I've really started having problems with that, too. But the neurologist doesn't lay any weight in that. I have no idea why he won't listen to me. My husband came with me two visits ago and was totally blown away by his unwillingness to listen. For the longest time I honestly thought my husband was making up stories so that people would feel bad for him having a wife whose memory is going... until one night at dinner when our 9-year-old son recollected a funny incident that supposedly had happened the week before. I actually got angry with both of them for teasing me like that and making up a story to try to make me feel stupid... Seeing me upset, my husband stopped laughing and calmly tried to remind me of the incident. I honest to God have no idea what they are talking about. That threw me for a loop. I cried myself to sleep that night. Sometimes friends insist they've told me things, but I can't

remember to save my life. I started worrying if Alzheimer's was setting in. But then I read that a lot of others in the group have memory issues, too, so I feel "normal," if that's the term to use. Again, I'm really hoping my new neurologist will help. If she doesn't - I assure you, I'll move on quickly! Thanks again, that was SO nice of you to email. This isn't easy, is it? I'm just so grateful to have found everyone on this site. Everyone is just wonderful. It's so good not to be alone. Now I don't feel so crazy. But I am... LOL! Have a great holiday weekend! Hugs, Jeannie Eileen Mac wrote: Jeanne, Tnis is Eileen and I am new to this site. i am replying instead of sending a new mail because I am still trying to figure out who sent which email. I am not as quick as I used to be. If you have a Doctor who is not sympathetic to your needs, you need a new doctor. Don't mess around with that kind of stuff. Do you live in an area that has more than one? Before your visit, as you exhibit symptoms throughout the month, write them down. If you are like me you will forget some of them by the time you get to the office. Take the notepad with you. No one should have such bad pain, and a health care provider is required (not the word I am looking for) to try to relieve your pain. I don't know how old you are but I had a hysterectomy and all my headaches went away. (Now some of you might say in more ways than one) but if you are experiencing some kind of migraine which I was, I

never had another one. It also relieved all the pain in the abdomen and legs from the periods. Then the Doctor needs to do some serious testing regarding your Sarcoid. Perhaps he has already. My Sarcoid has been limited to the peripheral nervous system. I have just recently started to have focal siezures but when they were doing the initial workup they did a spinal tap, an EMG of the nerves, and then they did a biopsy of the nerves in my legs. Now I was sent to several specialists along the way who had different ideas but at least they were all doing something. Anytime a doctor doesn't take you seriously, ask him if he is working for money or not! I found that I could tolerate the pain in my feet and legs better than the pain in my arms and hands once it reached there I had to have releief! I use a Duragesic Patch, Lyrica, Prednisone and Paxil. I use Vicodin for breakthrough pain. I only

use the vicodin once or twice the night before the patch is to be changed. So it works. Now I am on a lot of othe meds but I think those are the ones that control the pain. I was on Neurontin and that worked for a long time, he just wanted to try the Lyrica to see if the Neurontin was contributing to a side effect that I was having. I also take Namenda for the memory loss. It is for Alzheimer's but it works. I feel better. I hope you feel better and I hope the neurologist takes good care of you. Eileen Jeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have

me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has

only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your

antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various

anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you

all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the

difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Eileen! Thank you so much for writing - I really REALLY appreciate your thoughts! I did actually bring a list of symptoms for my neurologist a couple of weeks ago. He made me read them to him and then he just waived his hand like he wasn't worried about it. I asked him if he wanted it for my file and at first he said "no" but then took it. He aggravates me to no end. I did get in touch with from PA's neurologist's office, which lead to a phone call to my health insurance provider, which lead to the wonderful revelation that now that I have a diagnosis, I can go to as many different neurologists as I want as often as I want for as many opinions as I want! Isn't that WONDERFUL!? Anyhow, I had an appointment scheduled, but the morning of the appointment one of my dearest friends showed up at my front door at just before 7:00 in the morning - there had been a tragic, unexpected death in

the family. Needless to say, I have rescheduled and plan to see the new doctor soon. I actually can't wait! I am very, very VERY discouraged by doctors. I can't help thinking that if I had had this disease when I lived back in Rhode Island, my medical care would have far surpassed the situation I have encountered here in PA. (We're just outside of Pittsburgh... And I'm >gulp< 40.) Anyhow, the doctors have told me that the granuloma in my brain probably has something to do with why my body started early menopause - lovely, lovely, lovely. I'm wondering if you are right - if the awful headaches have something to do with that. I'll have to watch better next time and make note of everything! Thank you! They did have me on Neurontin for a while, too.. but it didn't work for me. I cannot for the life of me remember why, but I know there were

several months that they played around with my meds (both my regular physician and my neurologist kept changing them on me). Our pharmacist called me one afternoon, extremely alarmed because he had called the neurologist who had me on some meds that I had had a bad reaction to. . . The neurologist just kept telling him to put me on this or that, and the pharmacist kept responding, letting the Neurologist know that I had been on this or that before and why they took me off. Finally the pharmacist called me personally and highly recommended I discuss the situation with my family physician before taking any new meds. Needless to say, that, among other things, really REALLY made me lose confidence in my neurologist. So, I looked for a new one. Now it's the waiting game to get in. Very very frustrating. The thing is, locally, my neurologist is known as "boy wonder" (he's

in his late 50's), and he apparently was part of the original NS case studies, I guess? So everyone who knows anything here recommends him. I think he's an idiot. Big deal. I've learned the hard way that just because someone's name shows up on a certificate or degree or in a study, that doesn't mean they're an expert. I'll be happy to be out of his care, I assure you! :) As far as outside specialist testing, he sent me for a nerve conduction test (?is that what it's called?), and the doctor told me I have carpal tunnel. Uh, duuuh! But that doesn't explain anything else. He only tested my hands and wrists, so I honestly don't know what else that is supposed to tell him. I really am hoping the new neurologist will have more insight and more desire to pursue help for me. Now, as far as memory

loss, I've really started having problems with that, too. But the neurologist doesn't lay any weight in that. I have no idea why he won't listen to me. My husband came with me two visits ago and was totally blown away by his unwillingness to listen. For the longest time I honestly thought my husband was making up stories so that people would feel bad for him having a wife whose memory is going... until one night at dinner when our 9-year-old son recollected a funny incident that supposedly had happened the week before. I actually got angry with both of them for teasing me like that and making up a story to try to make me feel stupid... Seeing me upset, my husband stopped laughing and calmly tried to remind me of the incident. I honest to God have no idea what they are talking about. That threw me for a loop. I cried myself to sleep that night. Sometimes friends insist they've told me things, but I can't

remember to save my life. I started worrying if Alzheimer's was setting in. But then I read that a lot of others in the group have memory issues, too, so I feel "normal," if that's the term to use. Again, I'm really hoping my new neurologist will help. If she doesn't - I assure you, I'll move on quickly! Thanks again, that was SO nice of you to email. This isn't easy, is it? I'm just so grateful to have found everyone on this site. Everyone is just wonderful. It's so good not to be alone. Now I don't feel so crazy. But I am... LOL! Have a great holiday weekend! Hugs, Jeannie Eileen Mac wrote: Jeanne, Tnis is Eileen and I am new to this site. i am replying instead of sending a new mail because I am still trying to figure out who sent which email. I am not as quick as I used to be. If you have a Doctor who is not sympathetic to your needs, you need a new doctor. Don't mess around with that kind of stuff. Do you live in an area that has more than one? Before your visit, as you exhibit symptoms throughout the month, write them down. If you are like me you will forget some of them by the time you get to the office. Take the notepad with you. No one should have such bad pain, and a health care provider is required (not the word I am looking for) to try to relieve your pain. I don't know how old you are but I had a hysterectomy and all my headaches went away. (Now some of you might say in more ways than one) but if you are experiencing some kind of migraine which I was, I

never had another one. It also relieved all the pain in the abdomen and legs from the periods. Then the Doctor needs to do some serious testing regarding your Sarcoid. Perhaps he has already. My Sarcoid has been limited to the peripheral nervous system. I have just recently started to have focal siezures but when they were doing the initial workup they did a spinal tap, an EMG of the nerves, and then they did a biopsy of the nerves in my legs. Now I was sent to several specialists along the way who had different ideas but at least they were all doing something. Anytime a doctor doesn't take you seriously, ask him if he is working for money or not! I found that I could tolerate the pain in my feet and legs better than the pain in my arms and hands once it reached there I had to have releief! I use a Duragesic Patch, Lyrica, Prednisone and Paxil. I use Vicodin for breakthrough pain. I only

use the vicodin once or twice the night before the patch is to be changed. So it works. Now I am on a lot of othe meds but I think those are the ones that control the pain. I was on Neurontin and that worked for a long time, he just wanted to try the Lyrica to see if the Neurontin was contributing to a side effect that I was having. I also take Namenda for the memory loss. It is for Alzheimer's but it works. I feel better. I hope you feel better and I hope the neurologist takes good care of you. Eileen Jeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have

me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has

only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your

antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various

anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you

all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the

difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Eileen! Thank you so much for writing - I really REALLY appreciate your thoughts! I did actually bring a list of symptoms for my neurologist a couple of weeks ago. He made me read them to him and then he just waived his hand like he wasn't worried about it. I asked him if he wanted it for my file and at first he said "no" but then took it. He aggravates me to no end. I did get in touch with from PA's neurologist's office, which lead to a phone call to my health insurance provider, which lead to the wonderful revelation that now that I have a diagnosis, I can go to as many different neurologists as I want as often as I want for as many opinions as I want! Isn't that WONDERFUL!? Anyhow, I had an appointment scheduled, but the morning of the appointment one of my dearest friends showed up at my front door at just before 7:00 in the morning - there had been a tragic, unexpected death in

the family. Needless to say, I have rescheduled and plan to see the new doctor soon. I actually can't wait! I am very, very VERY discouraged by doctors. I can't help thinking that if I had had this disease when I lived back in Rhode Island, my medical care would have far surpassed the situation I have encountered here in PA. (We're just outside of Pittsburgh... And I'm >gulp< 40.) Anyhow, the doctors have told me that the granuloma in my brain probably has something to do with why my body started early menopause - lovely, lovely, lovely. I'm wondering if you are right - if the awful headaches have something to do with that. I'll have to watch better next time and make note of everything! Thank you! They did have me on Neurontin for a while, too.. but it didn't work for me. I cannot for the life of me remember why, but I know there were

several months that they played around with my meds (both my regular physician and my neurologist kept changing them on me). Our pharmacist called me one afternoon, extremely alarmed because he had called the neurologist who had me on some meds that I had had a bad reaction to. . . The neurologist just kept telling him to put me on this or that, and the pharmacist kept responding, letting the Neurologist know that I had been on this or that before and why they took me off. Finally the pharmacist called me personally and highly recommended I discuss the situation with my family physician before taking any new meds. Needless to say, that, among other things, really REALLY made me lose confidence in my neurologist. So, I looked for a new one. Now it's the waiting game to get in. Very very frustrating. The thing is, locally, my neurologist is known as "boy wonder" (he's

in his late 50's), and he apparently was part of the original NS case studies, I guess? So everyone who knows anything here recommends him. I think he's an idiot. Big deal. I've learned the hard way that just because someone's name shows up on a certificate or degree or in a study, that doesn't mean they're an expert. I'll be happy to be out of his care, I assure you! :) As far as outside specialist testing, he sent me for a nerve conduction test (?is that what it's called?), and the doctor told me I have carpal tunnel. Uh, duuuh! But that doesn't explain anything else. He only tested my hands and wrists, so I honestly don't know what else that is supposed to tell him. I really am hoping the new neurologist will have more insight and more desire to pursue help for me. Now, as far as memory

loss, I've really started having problems with that, too. But the neurologist doesn't lay any weight in that. I have no idea why he won't listen to me. My husband came with me two visits ago and was totally blown away by his unwillingness to listen. For the longest time I honestly thought my husband was making up stories so that people would feel bad for him having a wife whose memory is going... until one night at dinner when our 9-year-old son recollected a funny incident that supposedly had happened the week before. I actually got angry with both of them for teasing me like that and making up a story to try to make me feel stupid... Seeing me upset, my husband stopped laughing and calmly tried to remind me of the incident. I honest to God have no idea what they are talking about. That threw me for a loop. I cried myself to sleep that night. Sometimes friends insist they've told me things, but I can't

remember to save my life. I started worrying if Alzheimer's was setting in. But then I read that a lot of others in the group have memory issues, too, so I feel "normal," if that's the term to use. Again, I'm really hoping my new neurologist will help. If she doesn't - I assure you, I'll move on quickly! Thanks again, that was SO nice of you to email. This isn't easy, is it? I'm just so grateful to have found everyone on this site. Everyone is just wonderful. It's so good not to be alone. Now I don't feel so crazy. But I am... LOL! Have a great holiday weekend! Hugs, Jeannie Eileen Mac wrote: Jeanne, Tnis is Eileen and I am new to this site. i am replying instead of sending a new mail because I am still trying to figure out who sent which email. I am not as quick as I used to be. If you have a Doctor who is not sympathetic to your needs, you need a new doctor. Don't mess around with that kind of stuff. Do you live in an area that has more than one? Before your visit, as you exhibit symptoms throughout the month, write them down. If you are like me you will forget some of them by the time you get to the office. Take the notepad with you. No one should have such bad pain, and a health care provider is required (not the word I am looking for) to try to relieve your pain. I don't know how old you are but I had a hysterectomy and all my headaches went away. (Now some of you might say in more ways than one) but if you are experiencing some kind of migraine which I was, I

never had another one. It also relieved all the pain in the abdomen and legs from the periods. Then the Doctor needs to do some serious testing regarding your Sarcoid. Perhaps he has already. My Sarcoid has been limited to the peripheral nervous system. I have just recently started to have focal siezures but when they were doing the initial workup they did a spinal tap, an EMG of the nerves, and then they did a biopsy of the nerves in my legs. Now I was sent to several specialists along the way who had different ideas but at least they were all doing something. Anytime a doctor doesn't take you seriously, ask him if he is working for money or not! I found that I could tolerate the pain in my feet and legs better than the pain in my arms and hands once it reached there I had to have releief! I use a Duragesic Patch, Lyrica, Prednisone and Paxil. I use Vicodin for breakthrough pain. I only

use the vicodin once or twice the night before the patch is to be changed. So it works. Now I am on a lot of othe meds but I think those are the ones that control the pain. I was on Neurontin and that worked for a long time, he just wanted to try the Lyrica to see if the Neurontin was contributing to a side effect that I was having. I also take Namenda for the memory loss. It is for Alzheimer's but it works. I feel better. I hope you feel better and I hope the neurologist takes good care of you. Eileen Jeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have

me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has

only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your

antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various

anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you

all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the

difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Debbie! Well, that's great that you got out for a while & had some work-fun! It feels good to make a little money now and then, huh? I actually have come to a crossroads and am planning to resign from my position with the basket company - I'm a basket lady and branch advisor. Although it's upsetting to think I have to give it up - I've worked so hard to get where I am and establish my customer and contact base - it's kind of a relief knowing that stress won't be on my shoulders. I've been feeling the need to pare down and simplify lately - in every area of my life. I don't think there's anything wrong with that, although I know I'm going to miss it. I'm just one of those people who have to have irons in the fire and keeping busy, you know? But lately, I'm achey, tired, forgetful and overwhelmed. I've got some really great girls in my branch, and I know my customers will be taken care

of. I just can't handle all of the responsibility; I can't keep up with everything. It's tough for me to say something like that, but it's ok. It's really ok. I need to focus on my health, my family and my foundation (my friends and I established a charitable foundation to promote breast cancer awareness and help patients in treatment financially). Everything else can just sit on the back burner. I have to face that I'm not Superwoman, and that it's ok to say, "no," you know? Today I had a burst of energy and planted a garden. I haven't had a garden since I was diagnosed three years ago. But today, I got to play in the rich soil and now there are lovely green plants ready to become flourishing beauties. There is just something so satisfying about being in a garden. During the first three minutes, I felt like Mother Earth incarnate... Then the sweat, the dizziness, the pain

kicked in, and I felt like a muddy mess. But it was still fun. At the moment, I'm physically regretting it, of course. But I can't stand giving up everything anymore. So I'm going to give this a whirl. Wish me luck. My hubby calls me the "Al Capone of green thumbs." LOL!! Maybe I should have chosen a knitting project instead... My husband and son are at the Pirate's game tonight, so I can't wait to see their faces when they come home. They were planning to do this for me tomorrow afternoon! I'm sure I'll be read the riot act, but a girl's gotta do what a girl's gotta do sometimes, right? :) Well, you have a great weekend! Big hugs to you! Jeannie aylor wrote: Hi Jeannie, So sorry to hear the Cymbalta didn't work for you. I take Topomax for the bad headaches myself. Yours sound much worse than mine though. I am glad you have the appointment with the new neurologist . He should be able to help you with all of what you described. Let's hope so anyway. I hope you have found a "good" one! I have been doing pretty good. Thursday wasn't a good day for me, but yesterday I worked parttime at the library and it felt good to be out there in the real world accomplishing something. Its not something I get to do often and make real money for it. I volunteer usually but if someone is out , I actually get to fill in and they pay me for it. I got to fill in yesterday for someone. Extra money in my pocket. Even though I am on SSDI I can make so much and

not lose my benefits. SO that's how I am. I hope you are feeling better. Good luck with the new doctor. Hugs, DebbieJeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful

AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s)

I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your

doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful

little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It

was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be

miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry

about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Debbie! Well, that's great that you got out for a while & had some work-fun! It feels good to make a little money now and then, huh? I actually have come to a crossroads and am planning to resign from my position with the basket company - I'm a basket lady and branch advisor. Although it's upsetting to think I have to give it up - I've worked so hard to get where I am and establish my customer and contact base - it's kind of a relief knowing that stress won't be on my shoulders. I've been feeling the need to pare down and simplify lately - in every area of my life. I don't think there's anything wrong with that, although I know I'm going to miss it. I'm just one of those people who have to have irons in the fire and keeping busy, you know? But lately, I'm achey, tired, forgetful and overwhelmed. I've got some really great girls in my branch, and I know my customers will be taken care

of. I just can't handle all of the responsibility; I can't keep up with everything. It's tough for me to say something like that, but it's ok. It's really ok. I need to focus on my health, my family and my foundation (my friends and I established a charitable foundation to promote breast cancer awareness and help patients in treatment financially). Everything else can just sit on the back burner. I have to face that I'm not Superwoman, and that it's ok to say, "no," you know? Today I had a burst of energy and planted a garden. I haven't had a garden since I was diagnosed three years ago. But today, I got to play in the rich soil and now there are lovely green plants ready to become flourishing beauties. There is just something so satisfying about being in a garden. During the first three minutes, I felt like Mother Earth incarnate... Then the sweat, the dizziness, the pain

kicked in, and I felt like a muddy mess. But it was still fun. At the moment, I'm physically regretting it, of course. But I can't stand giving up everything anymore. So I'm going to give this a whirl. Wish me luck. My hubby calls me the "Al Capone of green thumbs." LOL!! Maybe I should have chosen a knitting project instead... My husband and son are at the Pirate's game tonight, so I can't wait to see their faces when they come home. They were planning to do this for me tomorrow afternoon! I'm sure I'll be read the riot act, but a girl's gotta do what a girl's gotta do sometimes, right? :) Well, you have a great weekend! Big hugs to you! Jeannie aylor wrote: Hi Jeannie, So sorry to hear the Cymbalta didn't work for you. I take Topomax for the bad headaches myself. Yours sound much worse than mine though. I am glad you have the appointment with the new neurologist . He should be able to help you with all of what you described. Let's hope so anyway. I hope you have found a "good" one! I have been doing pretty good. Thursday wasn't a good day for me, but yesterday I worked parttime at the library and it felt good to be out there in the real world accomplishing something. Its not something I get to do often and make real money for it. I volunteer usually but if someone is out , I actually get to fill in and they pay me for it. I got to fill in yesterday for someone. Extra money in my pocket. Even though I am on SSDI I can make so much and

not lose my benefits. SO that's how I am. I hope you are feeling better. Good luck with the new doctor. Hugs, DebbieJeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful

AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s)

I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your

doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful

little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It

was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be

miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry

about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Hi Debbie! Well, that's great that you got out for a while & had some work-fun! It feels good to make a little money now and then, huh? I actually have come to a crossroads and am planning to resign from my position with the basket company - I'm a basket lady and branch advisor. Although it's upsetting to think I have to give it up - I've worked so hard to get where I am and establish my customer and contact base - it's kind of a relief knowing that stress won't be on my shoulders. I've been feeling the need to pare down and simplify lately - in every area of my life. I don't think there's anything wrong with that, although I know I'm going to miss it. I'm just one of those people who have to have irons in the fire and keeping busy, you know? But lately, I'm achey, tired, forgetful and overwhelmed. I've got some really great girls in my branch, and I know my customers will be taken care

of. I just can't handle all of the responsibility; I can't keep up with everything. It's tough for me to say something like that, but it's ok. It's really ok. I need to focus on my health, my family and my foundation (my friends and I established a charitable foundation to promote breast cancer awareness and help patients in treatment financially). Everything else can just sit on the back burner. I have to face that I'm not Superwoman, and that it's ok to say, "no," you know? Today I had a burst of energy and planted a garden. I haven't had a garden since I was diagnosed three years ago. But today, I got to play in the rich soil and now there are lovely green plants ready to become flourishing beauties. There is just something so satisfying about being in a garden. During the first three minutes, I felt like Mother Earth incarnate... Then the sweat, the dizziness, the pain

kicked in, and I felt like a muddy mess. But it was still fun. At the moment, I'm physically regretting it, of course. But I can't stand giving up everything anymore. So I'm going to give this a whirl. Wish me luck. My hubby calls me the "Al Capone of green thumbs." LOL!! Maybe I should have chosen a knitting project instead... My husband and son are at the Pirate's game tonight, so I can't wait to see their faces when they come home. They were planning to do this for me tomorrow afternoon! I'm sure I'll be read the riot act, but a girl's gotta do what a girl's gotta do sometimes, right? :) Well, you have a great weekend! Big hugs to you! Jeannie aylor wrote: Hi Jeannie, So sorry to hear the Cymbalta didn't work for you. I take Topomax for the bad headaches myself. Yours sound much worse than mine though. I am glad you have the appointment with the new neurologist . He should be able to help you with all of what you described. Let's hope so anyway. I hope you have found a "good" one! I have been doing pretty good. Thursday wasn't a good day for me, but yesterday I worked parttime at the library and it felt good to be out there in the real world accomplishing something. Its not something I get to do often and make real money for it. I volunteer usually but if someone is out , I actually get to fill in and they pay me for it. I got to fill in yesterday for someone. Extra money in my pocket. Even though I am on SSDI I can make so much and

not lose my benefits. SO that's how I am. I hope you are feeling better. Good luck with the new doctor. Hugs, DebbieJeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful

AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s)

I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your

doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful

little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around. It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It

was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is the only one. I hope you feel better. I know it can be

miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the

very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry

about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Jeanne, are you feeding an animal outside? Possums will come get cat & dog food, and please beware big time of them. They have a tremendous number of teeth, and are very aggressive. Everybody just thinks they roll over and play dead when they see humans...........WRONG!! They will back up hiss, growl and bite. Even when they are babies they are mean. If your feeding your animal outside, let them eat then take the food in. It's a good idea anyway, if you have possums and skunks, your probably have raccoons. If a rabid raccoon drinks or eats out of your pets bowl, they can give the animal rabies. Raccoons can not be innoculated against rabies, are sometimes born with it so they can have it as infants, and where we can only live about 10 days with rabies, they can live about 3 months and appear perfectly healthy. (I used to work for an environmental health director - part of our job was rabies)

About the only thing worse than a raccoon is a bat, they are nearly 100% rabid. Cats carry rabies more than dogs, squirrels do not carry rabies and to my knowledge we never had a possum test possitive. Reminds me of a funny story. My boss had someone bring in a baby squirrel and insist that it be tested for rabies as it had bitten a child. The animals we get for testing are usually already dead but this one was not. My boss was trying to figure out a way to humanely kill this squirrel. He came up with the bright idea of putting it in a small box, sealing the lid and putting it in the freezer till it passed away. He forgot that squirrels are part of the rodent family and can chew through things. We had a real nice lady named Eartha that helped in the medical clinics in the back. She went to take something out of the freezer not knowing the squirrel was in there and had chewed his

way out. When she opened the door, the squirrel ran up her arm and across her shoulders while she screamed her brains out, before completing his escape attempt. Eartha liked to have had a heart attack, and was so mad at my boss she wouldn't speak to him for days. (In all fairness he didn't mean to scare her to death - but he nearly succeeded). She was still mad and fussing when she saw me later on. I loved her to death, but I really had to control myself and not laugh until later.....LOL Jeanne Betters wrote: Oh! What a GOOD idea, Connie! I never thought of that! Hee hee... the simplest of things always seem to escape me! Duh!! You know, it might really work to my advantage, too... If I'm out there

when the sun goes down, I won't have to worry about anybody catching me in shorts OR being blinded by my light! LOL!!! I think I'll try it... I'll let you know how it goes! Thank you!!! While we're on the subject of gardening - does anybody have a good remedy to keep moles away? And does anyone know what possums eat or how to keep them away from my garden? The other night a friend and I had a meeting that ran very late. When she left I was helping her load up her van and my dog went into the front bushes. I told my friend it must be the three-legged rabbit that runs around here all the time. She said, "Uh... I... don't... think... so.." and bolted for her van. I was standing on the front porch and looked down as a possum scampered across one step down from where I was standing. Surprisingly, I found that even with NS I can move pretty darned

fast - I almost took flight through the front doors! LOL!!! Anyhow, I'd hate for the little dude to eat all my efforts in the garden... Oh, and we get skunks, too... It amazes me for living on the outskirts of a small city... Where do these critters come from??? GEEZ!! Thanks again, Connie! :) Hugs, Jeannie Connie Griffis wrote: Jeanne, try gardening at dusk when the sun is going down, then maybe you won't feel quite as bad. Just a suggestion///ConnieJeanne Betters wrote: Hi Debbie! Well, that's great that you got out for a while & had some work-fun! It feels good to make a little money now and then, huh? I actually have come to a crossroads and am planning to resign from my position with the basket company - I'm a basket lady and branch advisor. Although it's upsetting to think I have to give it up - I've worked so hard to get where I am and establish my customer and contact base - it's kind of a relief knowing that stress won't be on my shoulders. I've been feeling the need to pare down and simplify lately - in every area of my life. I don't think there's anything wrong with that, although I know I'm going to miss it. I'm just one of those people who have to have irons in the fire and keeping busy, you know? But lately, I'm achey, tired, forgetful and overwhelmed. I've got

some really great girls in my branch, and I know my customers will be taken care of. I just can't handle all of the responsibility; I can't keep up with everything. It's tough for me to say something like that, but it's ok. It's really ok. I need to focus on my health, my family and my foundation (my friends and I established a charitable foundation to promote breast cancer awareness and help patients in treatment financially). Everything else can just sit on the back burner. I have to face that I'm not Superwoman, and that it's ok to say, "no," you know? Today I had a burst of energy and planted a garden. I haven't had a garden since I was diagnosed three years ago. But today, I got to play in the rich soil and now there are lovely green plants ready to become flourishing beauties. There is just something so satisfying about being in a garden. During the first three minutes, I

felt like Mother Earth incarnate... Then the sweat, the dizziness, the pain kicked in, and I felt like a muddy mess. But it was still fun. At the moment, I'm physically regretting it, of course. But I can't stand giving up everything anymore. So I'm going to give this a whirl. Wish me luck. My hubby calls me the "Al Capone of green thumbs." LOL!! Maybe I should have chosen a knitting project instead... My husband and son are at the Pirate's game tonight, so I can't wait to see their faces when they come home. They were planning to do this for me tomorrow afternoon! I'm sure I'll be read the riot act, but a girl's gotta do what a girl's gotta do sometimes, right? :) Well, you have a great weekend! Big hugs to you! Jeannie aylor

wrote: Hi Jeannie, So sorry to hear the Cymbalta didn't work for you. I take Topomax for the bad headaches myself. Yours sound much worse than mine though. I am glad you have the appointment with the new neurologist . He should be able to help you with all of what you described. Let's hope so anyway. I hope you have found a "good" one! I have been doing pretty good. Thursday wasn't a good day for me, but yesterday I worked parttime at the library and it felt good to be out there in the real world accomplishing something. Its not something I get to do often and make real money for it. I volunteer usually but if someone is out , I actually get to fill in and they pay me for it. I got to fill in yesterday

for someone. Extra money in my pocket. Even though I am on SSDI I can make so much and not lose my benefits. SO that's how I am. I hope you are feeling better. Good luck with the new doctor. Hugs, DebbieJeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I

take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am

going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But

you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around.

It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is

the only one. I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the

only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers

more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+

countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Jeanne, are you feeding an animal outside? Possums will come get cat & dog food, and please beware big time of them. They have a tremendous number of teeth, and are very aggressive. Everybody just thinks they roll over and play dead when they see humans...........WRONG!! They will back up hiss, growl and bite. Even when they are babies they are mean. If your feeding your animal outside, let them eat then take the food in. It's a good idea anyway, if you have possums and skunks, your probably have raccoons. If a rabid raccoon drinks or eats out of your pets bowl, they can give the animal rabies. Raccoons can not be innoculated against rabies, are sometimes born with it so they can have it as infants, and where we can only live about 10 days with rabies, they can live about 3 months and appear perfectly healthy. (I used to work for an environmental health director - part of our job was rabies)

About the only thing worse than a raccoon is a bat, they are nearly 100% rabid. Cats carry rabies more than dogs, squirrels do not carry rabies and to my knowledge we never had a possum test possitive. Reminds me of a funny story. My boss had someone bring in a baby squirrel and insist that it be tested for rabies as it had bitten a child. The animals we get for testing are usually already dead but this one was not. My boss was trying to figure out a way to humanely kill this squirrel. He came up with the bright idea of putting it in a small box, sealing the lid and putting it in the freezer till it passed away. He forgot that squirrels are part of the rodent family and can chew through things. We had a real nice lady named Eartha that helped in the medical clinics in the back. She went to take something out of the freezer not knowing the squirrel was in there and had chewed his

way out. When she opened the door, the squirrel ran up her arm and across her shoulders while she screamed her brains out, before completing his escape attempt. Eartha liked to have had a heart attack, and was so mad at my boss she wouldn't speak to him for days. (In all fairness he didn't mean to scare her to death - but he nearly succeeded). She was still mad and fussing when she saw me later on. I loved her to death, but I really had to control myself and not laugh until later.....LOL Jeanne Betters wrote: Oh! What a GOOD idea, Connie! I never thought of that! Hee hee... the simplest of things always seem to escape me! Duh!! You know, it might really work to my advantage, too... If I'm out there

when the sun goes down, I won't have to worry about anybody catching me in shorts OR being blinded by my light! LOL!!! I think I'll try it... I'll let you know how it goes! Thank you!!! While we're on the subject of gardening - does anybody have a good remedy to keep moles away? And does anyone know what possums eat or how to keep them away from my garden? The other night a friend and I had a meeting that ran very late. When she left I was helping her load up her van and my dog went into the front bushes. I told my friend it must be the three-legged rabbit that runs around here all the time. She said, "Uh... I... don't... think... so.." and bolted for her van. I was standing on the front porch and looked down as a possum scampered across one step down from where I was standing. Surprisingly, I found that even with NS I can move pretty darned

fast - I almost took flight through the front doors! LOL!!! Anyhow, I'd hate for the little dude to eat all my efforts in the garden... Oh, and we get skunks, too... It amazes me for living on the outskirts of a small city... Where do these critters come from??? GEEZ!! Thanks again, Connie! :) Hugs, Jeannie Connie Griffis wrote: Jeanne, try gardening at dusk when the sun is going down, then maybe you won't feel quite as bad. Just a suggestion///ConnieJeanne Betters wrote: Hi Debbie! Well, that's great that you got out for a while & had some work-fun! It feels good to make a little money now and then, huh? I actually have come to a crossroads and am planning to resign from my position with the basket company - I'm a basket lady and branch advisor. Although it's upsetting to think I have to give it up - I've worked so hard to get where I am and establish my customer and contact base - it's kind of a relief knowing that stress won't be on my shoulders. I've been feeling the need to pare down and simplify lately - in every area of my life. I don't think there's anything wrong with that, although I know I'm going to miss it. I'm just one of those people who have to have irons in the fire and keeping busy, you know? But lately, I'm achey, tired, forgetful and overwhelmed. I've got

some really great girls in my branch, and I know my customers will be taken care of. I just can't handle all of the responsibility; I can't keep up with everything. It's tough for me to say something like that, but it's ok. It's really ok. I need to focus on my health, my family and my foundation (my friends and I established a charitable foundation to promote breast cancer awareness and help patients in treatment financially). Everything else can just sit on the back burner. I have to face that I'm not Superwoman, and that it's ok to say, "no," you know? Today I had a burst of energy and planted a garden. I haven't had a garden since I was diagnosed three years ago. But today, I got to play in the rich soil and now there are lovely green plants ready to become flourishing beauties. There is just something so satisfying about being in a garden. During the first three minutes, I

felt like Mother Earth incarnate... Then the sweat, the dizziness, the pain kicked in, and I felt like a muddy mess. But it was still fun. At the moment, I'm physically regretting it, of course. But I can't stand giving up everything anymore. So I'm going to give this a whirl. Wish me luck. My hubby calls me the "Al Capone of green thumbs." LOL!! Maybe I should have chosen a knitting project instead... My husband and son are at the Pirate's game tonight, so I can't wait to see their faces when they come home. They were planning to do this for me tomorrow afternoon! I'm sure I'll be read the riot act, but a girl's gotta do what a girl's gotta do sometimes, right? :) Well, you have a great weekend! Big hugs to you! Jeannie aylor

wrote: Hi Jeannie, So sorry to hear the Cymbalta didn't work for you. I take Topomax for the bad headaches myself. Yours sound much worse than mine though. I am glad you have the appointment with the new neurologist . He should be able to help you with all of what you described. Let's hope so anyway. I hope you have found a "good" one! I have been doing pretty good. Thursday wasn't a good day for me, but yesterday I worked parttime at the library and it felt good to be out there in the real world accomplishing something. Its not something I get to do often and make real money for it. I volunteer usually but if someone is out , I actually get to fill in and they pay me for it. I got to fill in yesterday

for someone. Extra money in my pocket. Even though I am on SSDI I can make so much and not lose my benefits. SO that's how I am. I hope you are feeling better. Good luck with the new doctor. Hugs, DebbieJeanne Betters wrote: Hi Debbie! They had me on Cymbalta, but it didn't do a dang thing for me. The Amitryptalin works... I just wish I could remember what the brand name was. I'll have to ask my husband. They have me on that and Toprol XL for high blood pressure. My doctor said he believes my blood pressure was so high due to pain (I can't remember what it was, but my foster daughter Penny had a fit when she heard what it was - she's a nurse's aide at a nursing home.). When I

take both, for the most part, I'm good. Just before my "special time" each month, I'm in awful AWFUL "I can't move, don't bug me, I really love you, but please go somewhere else, have some fun and leave me alone for a while" kind of pain, but it goes away after a few days. My headaches are so awful when they come. And it's weird because even though I can't feel the pain of them, I always "feel" them - like my head seems always on the verge of horrific pain. I can't explain it, but it's there. And my arms are always achey. I actually started getting tingly numbness in my feet last week, which really freaked me out, but it has only come once or twice. I didn't tell anyone because I don't want people to make a big deal of it. They'd make me go back to the neurologist and he'd make me feel like I was crazy, so I'll deal with these little surprises until I can't handle them anymore. I am

going to see a new neurologist soon. I'm hoping that she will be more help than the doctor(s) I see now. How are you doing? Hugs, Jeannie Debbie wrote: Hi Jeanne, I am on Cymbalta. Which is an antidepressant that helps with the pain. It doesn't help all the pain , I am also on a Duragesic patch and have vicodin on hand as well. But I noticed you said your antidpressant helped. DebbieJeanne Betters wrote: Oh Connie - that STINKS!! (But

you gave me a giggle with the mental picture... wouldn't you just like to see that happen to your doctors just once? LOL!) How do they find granulomas if they can't do an MRI??? Do they even try? It's always something else, isn't it? Unbelievable. Well, we're stronger than we seem, don't we know it? I hope they will at least try some sort of pain blocker for you. The anti-depressant really works for me - it's amazing. And, it keeps me annoyingly chipper, too! ;) Hugs, Jeannie Connie Griffis wrote: Jeanne, Thanks so much for the information. I am so thankful that you all are kind enough to answer my questions. As to MRI's, I wish I could have one since they seem better at locating our hateful little friends (granulomas), however I have an InSyncIII Pacemaker so I can not have an MRI. I'd look like that doctor in the old suspense movie, he's chasing the good guys and they run through the MRI room, turn on the machine and the bad guy ends up stuck to the top of the MRI by my pacer, ouch...that hurt. Thanks again///ConnieJeanne Betters wrote: Hi Connie - Sorry this is a little late. I've been offline for a little while. When I "got sick" it all started with the strangest sensation in my head that felt like a little baby's fist twisting around.

It made me very lightheaded and dizzy... Like the entire room was going white and I was floating. It was awful. After a few visits to the doctor, he took me seriously. The MRI showed a granuloma (?I think that's what they called it) right where I told them - smack dab in the middle of my head at the top of my spinal chord. They said it's not life threatening, but I have since suffered excruciating headaches that sound similar to what you are experiencing. I usually say it's like a couple of swords sticking up through the base of my neck up through the top of my head. The pain was unbearable until they got me on the right meds. They tried various anti-depressants (pain blockers) unti we found one I can deal with - I can't remember the brand name, but the generic is Amitryptalin. Anyhow, I think it would be a good idea to ask if they would do an MRI for you. I have them about every six months and so far this is

the only one. I hope you feel better. I know it can be miserable. And believe me, when they called with the results I was convinced I was dying! LOL! My family was just really happy that they actually FOUND a brain up there! LOL!!! You'll be in my prayers for certain. Please let me know how you make out, ok?Hugs, JeannieConnie Griffis wrote: Hi Everybody, Hope everything is going ok with you all. I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the

only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even though the pain has stopped. It's never done that before. What is this? Any ideas? I know you guys are not doctors, but I trust your answers

more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way. As always//Connie How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. Love cheap thrills? Enjoy PC-to-Phone calls to 30+

countries for just 2�/min with Yahoo! Messenger with Voice. __________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Thanks Debbie,

It comes and goes, I woke up this

am with some head pain again, I think I might call my doc and see if he will up

the one drug I am still on for the head pain, the

nortriptyline? My husband is one of those on again off again

type of supporters, know what I mean. I have two wonderful supportive

boys but they have there own life too. And my daughter doesn’t get

it yet, she’s only 10. Anyway, I’ve done ok with it, thanks

again. Hope you are doing good and that you have a great day.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Thursday, June 01, 2006 7:08 AM

To: Neurosarcoidosis

Subject: RE: Re: Questions

Marla,

I am sorry you are having such bad head

pain lately. It sounds like you are going through a really tough

time right now. I sometimes get that head pain too but not that severe as

you described. I hope your husband is giving you the support you need.

Take it easy and as you said, take your time and rest up. Everything else

can wait. Hope you feel better. Hugs, Debbie

Marla Bramer

wrote:

Terri,

I am going back on my emails trying to catch up now, I do get pulsating

sensation in my head, in fact last night had a slight feeling of that then

was able to fall asleep, but woke up with a very tender left temple where I

felt it, in fact just to make a facial expression causes soreness, like I

got hit or something. I've had a few where I couldn't move my head, if I

bent over just a slight bit, the pulsating was overwhelming one night I

couldn't decided if I should go to bed or the ER, I thought I was having a

stroke or something, I went to bed, I told my husband I almost wrote him a

letter before taking my vicodin and going to bed just in case I didn't wake

up, he was not happy about that. They are usually not even close to being

that bad. I am still playing catch up from doing to much, and now I have so

much to do , but it can wait! Hope you are doing well and have an easy day.

Smiles,

Marla

Re: Questions

>

>

>

> In a message dated 5/16/06 4:58:50 PM Pacific Daylight Time,

> conaugusta@... writes:

>

>

>

>

>

> I have had trouble off and on with an unusual pain mostly in the right

side

> of my head above my ear. 2 of 3 times this pain has felt like someone

stuck

> a 38 to my head and pulled the trigger, the only thing that I imagine

would

> be different was it took a while for the pain to stop, and the very

last

> time this happened it felt like something went up my carotid to my

head,

>

>

>

> We do have a " temporal artery " that is in the area you're

talking

about. If

> you wear glasses, the temporal artery is directly under the temples of

your

> eye glass frame.

> It is possible to get strokes or blood clots in this artery, and if a

clot

> does happen-- vision loss is possible.

> If you have high cholestrol levels, many times this shows up in this

artery

> before it shows anywhere else. (You also get a " ring " around the

iris

of

> the eye-- that is cholestrol.)

> For those of us on steroids- or have a history of pred useage, it's

> important to watch for these signals-- as they can be signs of more

serious

> problems. Also the trigeminal nerve runs up that meridian--- so it may

be

> that.

> Get it checked out, a simple doppler test done by the ophthalmologist

or

> neurologist along both the cartoids and the temporal artery can be

helpful.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

Share this post


Link to post
Share on other sites
Guest guest

Thanks Debbie,

It comes and goes, I woke up this

am with some head pain again, I think I might call my doc and see if he will up

the one drug I am still on for the head pain, the

nortriptyline? My husband is one of those on again off again

type of supporters, know what I mean. I have two wonderful supportive

boys but they have there own life too. And my daughter doesn’t get

it yet, she’s only 10. Anyway, I’ve done ok with it, thanks

again. Hope you are doing good and that you have a great day.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Thursday, June 01, 2006 7:08 AM

To: Neurosarcoidosis

Subject: RE: Re: Questions

Marla,

I am sorry you are having such bad head

pain lately. It sounds like you are going through a really tough

time right now. I sometimes get that head pain too but not that severe as

you described. I hope your husband is giving you the support you need.

Take it easy and as you said, take your time and rest up. Everything else

can wait. Hope you feel better. Hugs, Debbie

Marla Bramer

wrote:

Terri,

I am going back on my emails trying to catch up now, I do get pulsating

sensation in my head, in fact last night had a slight feeling of that then

was able to fall asleep, but woke up with a very tender left temple where I

felt it, in fact just to make a facial expression causes soreness, like I

got hit or something. I've had a few where I couldn't move my head, if I

bent over just a slight bit, the pulsating was overwhelming one night I

couldn't decided if I should go to bed or the ER, I thought I was having a

stroke or something, I went to bed, I told my husband I almost wrote him a

letter before taking my vicodin and going to bed just in case I didn't wake

up, he was not happy about that. They are usually not even close to being

that bad. I am still playing catch up from doing to much, and now I have so

much to do , but it can wait! Hope you are doing well and have an easy day.

Smiles,

Marla

Re: Questions

>

>

>

> In a message dated 5/16/06 4:58:50 PM Pacific Daylight Time,

> conaugusta@... writes:

>

>

>

>

>

> I have had trouble off and on with an unusual pain mostly in the right

side

> of my head above my ear. 2 of 3 times this pain has felt like someone

stuck

> a 38 to my head and pulled the trigger, the only thing that I imagine

would

> be different was it took a while for the pain to stop, and the very

last

> time this happened it felt like something went up my carotid to my

head,

>

>

>

> We do have a " temporal artery " that is in the area you're

talking

about. If

> you wear glasses, the temporal artery is directly under the temples of

your

> eye glass frame.

> It is possible to get strokes or blood clots in this artery, and if a

clot

> does happen-- vision loss is possible.

> If you have high cholestrol levels, many times this shows up in this

artery

> before it shows anywhere else. (You also get a " ring " around the

iris

of

> the eye-- that is cholestrol.)

> For those of us on steroids- or have a history of pred useage, it's

> important to watch for these signals-- as they can be signs of more

serious

> problems. Also the trigeminal nerve runs up that meridian--- so it may

be

> that.

> Get it checked out, a simple doppler test done by the ophthalmologist

or

> neurologist along both the cartoids and the temporal artery can be

helpful.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

Share this post


Link to post
Share on other sites
Guest guest

Thanks Debbie,

It comes and goes, I woke up this

am with some head pain again, I think I might call my doc and see if he will up

the one drug I am still on for the head pain, the

nortriptyline? My husband is one of those on again off again

type of supporters, know what I mean. I have two wonderful supportive

boys but they have there own life too. And my daughter doesn’t get

it yet, she’s only 10. Anyway, I’ve done ok with it, thanks

again. Hope you are doing good and that you have a great day.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Thursday, June 01, 2006 7:08 AM

To: Neurosarcoidosis

Subject: RE: Re: Questions

Marla,

I am sorry you are having such bad head

pain lately. It sounds like you are going through a really tough

time right now. I sometimes get that head pain too but not that severe as

you described. I hope your husband is giving you the support you need.

Take it easy and as you said, take your time and rest up. Everything else

can wait. Hope you feel better. Hugs, Debbie

Marla Bramer

wrote:

Terri,

I am going back on my emails trying to catch up now, I do get pulsating

sensation in my head, in fact last night had a slight feeling of that then

was able to fall asleep, but woke up with a very tender left temple where I

felt it, in fact just to make a facial expression causes soreness, like I

got hit or something. I've had a few where I couldn't move my head, if I

bent over just a slight bit, the pulsating was overwhelming one night I

couldn't decided if I should go to bed or the ER, I thought I was having a

stroke or something, I went to bed, I told my husband I almost wrote him a

letter before taking my vicodin and going to bed just in case I didn't wake

up, he was not happy about that. They are usually not even close to being

that bad. I am still playing catch up from doing to much, and now I have so

much to do , but it can wait! Hope you are doing well and have an easy day.

Smiles,

Marla

Re: Questions

>

>

>

> In a message dated 5/16/06 4:58:50 PM Pacific Daylight Time,

> conaugusta@... writes:

>

>

>

>

>

> I have had trouble off and on with an unusual pain mostly in the right

side

> of my head above my ear. 2 of 3 times this pain has felt like someone

stuck

> a 38 to my head and pulled the trigger, the only thing that I imagine

would

> be different was it took a while for the pain to stop, and the very

last

> time this happened it felt like something went up my carotid to my

head,

>

>

>

> We do have a " temporal artery " that is in the area you're

talking

about. If

> you wear glasses, the temporal artery is directly under the temples of

your

> eye glass frame.

> It is possible to get strokes or blood clots in this artery, and if a

clot

> does happen-- vision loss is possible.

> If you have high cholestrol levels, many times this shows up in this

artery

> before it shows anywhere else. (You also get a " ring " around the

iris

of

> the eye-- that is cholestrol.)

> For those of us on steroids- or have a history of pred useage, it's

> important to watch for these signals-- as they can be signs of more

serious

> problems. Also the trigeminal nerve runs up that meridian--- so it may

be

> that.

> Get it checked out, a simple doppler test done by the ophthalmologist

or

> neurologist along both the cartoids and the temporal artery can be

helpful.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi girls! My dog, Pawlee, loves to catch moles and bring them home to "mama" as a gift... That's probably why I've been more interested in getting rid of them (not so much as garden problems). They ARE ugly little suckers, but if the good Lord created them, there must be a good reason... Even if for nothing more than giving our dogs special presents to bring us on Mother's Day!!! LOL! I went to a small local nursery the other day and the lady told me to do away with all the poisons, etc. She told me to don a pair of rubber or fabric gloves, take a large package of Juicy Fruit gum, tear the sticks into pieces and then "plant" them around my plants. Apparently the moles hate them, and, as long as they don't smell the human smell, the gum is a fabulous deterrant for the rodentia (aka moles)... She also mentioned the human hair and said we can buy is it deer blood or ox

blood to put around the perimeter of the garden? Anyway, she seemed extremely optomistic that this is a humane solution to an age old problem. I've learned to trust the farmers... I'll let you know how it works.. uh, that is, if my Juicy Fruit lovin' 9-year-old stays away from my package and lets me do what I've gotta do!!! LOL! Happy tomato-watchin'! Thanks for all the great advice! JeannieConnie Griffis wrote: I was the meany that said get

rid of the possum, hey but that's cool. As to the moles, I know you don't like terminating things, but they will make places in your yard that will flip you end over teakettle and we both know that if you fall hard enough you can break things. The tunnels they build don't look like they would cave in like they do, but when they give way under your foot it's trouble. By the way they are really ugly if that helps. To bad your dog hasn't taken an interest in them, my son's dog loves to catch them. I know, I know, yuck. Trust me I don't like to kill things either, I will catch a rain frog and walk it all the way out to a plant preferably near water rather than have it die. But living in the country like I used to, at times it became necessary to get rid of uninvited guests. Bye for now///Conniemosaicgirl1

wrote: Connie, The moles/voles have eaten my front bed completely. I went to Home Depot and got some poison but I just couldn't do it. When they finish eating that bed they will move on. Since I have been sick just the thought of killing something makes me sick to think about it. The poison was called "Poison Peanuts". I thought at least they would think they were having a treat...just figured they needed to be alive. Don't think I am telling you not to poison yours - they are terrible pests. Just let me know if you hear of a humane treatment. Thanks. Terri G. > Hi Everybody, Hope everything is going ok with you all. > > I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on

for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even> though the pain has stopped. It's never done that before. What is this? Any ideas?> > I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way.> > As always//Connie> > ---------------------------------> How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. > > > ---------------------------------> Love cheap

thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. > > __________________________________________________>

Share this post


Link to post
Share on other sites
Guest guest

Hi girls! My dog, Pawlee, loves to catch moles and bring them home to "mama" as a gift... That's probably why I've been more interested in getting rid of them (not so much as garden problems). They ARE ugly little suckers, but if the good Lord created them, there must be a good reason... Even if for nothing more than giving our dogs special presents to bring us on Mother's Day!!! LOL! I went to a small local nursery the other day and the lady told me to do away with all the poisons, etc. She told me to don a pair of rubber or fabric gloves, take a large package of Juicy Fruit gum, tear the sticks into pieces and then "plant" them around my plants. Apparently the moles hate them, and, as long as they don't smell the human smell, the gum is a fabulous deterrant for the rodentia (aka moles)... She also mentioned the human hair and said we can buy is it deer blood or ox

blood to put around the perimeter of the garden? Anyway, she seemed extremely optomistic that this is a humane solution to an age old problem. I've learned to trust the farmers... I'll let you know how it works.. uh, that is, if my Juicy Fruit lovin' 9-year-old stays away from my package and lets me do what I've gotta do!!! LOL! Happy tomato-watchin'! Thanks for all the great advice! JeannieConnie Griffis wrote: I was the meany that said get

rid of the possum, hey but that's cool. As to the moles, I know you don't like terminating things, but they will make places in your yard that will flip you end over teakettle and we both know that if you fall hard enough you can break things. The tunnels they build don't look like they would cave in like they do, but when they give way under your foot it's trouble. By the way they are really ugly if that helps. To bad your dog hasn't taken an interest in them, my son's dog loves to catch them. I know, I know, yuck. Trust me I don't like to kill things either, I will catch a rain frog and walk it all the way out to a plant preferably near water rather than have it die. But living in the country like I used to, at times it became necessary to get rid of uninvited guests. Bye for now///Conniemosaicgirl1

wrote: Connie, The moles/voles have eaten my front bed completely. I went to Home Depot and got some poison but I just couldn't do it. When they finish eating that bed they will move on. Since I have been sick just the thought of killing something makes me sick to think about it. The poison was called "Poison Peanuts". I thought at least they would think they were having a treat...just figured they needed to be alive. Don't think I am telling you not to poison yours - they are terrible pests. Just let me know if you hear of a humane treatment. Thanks. Terri G. > Hi Everybody, Hope everything is going ok with you all. > > I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on

for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even> though the pain has stopped. It's never done that before. What is this? Any ideas?> > I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way.> > As always//Connie> > ---------------------------------> How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. > > > ---------------------------------> Love cheap

thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. > > __________________________________________________>

Share this post


Link to post
Share on other sites
Guest guest

Hi girls! My dog, Pawlee, loves to catch moles and bring them home to "mama" as a gift... That's probably why I've been more interested in getting rid of them (not so much as garden problems). They ARE ugly little suckers, but if the good Lord created them, there must be a good reason... Even if for nothing more than giving our dogs special presents to bring us on Mother's Day!!! LOL! I went to a small local nursery the other day and the lady told me to do away with all the poisons, etc. She told me to don a pair of rubber or fabric gloves, take a large package of Juicy Fruit gum, tear the sticks into pieces and then "plant" them around my plants. Apparently the moles hate them, and, as long as they don't smell the human smell, the gum is a fabulous deterrant for the rodentia (aka moles)... She also mentioned the human hair and said we can buy is it deer blood or ox

blood to put around the perimeter of the garden? Anyway, she seemed extremely optomistic that this is a humane solution to an age old problem. I've learned to trust the farmers... I'll let you know how it works.. uh, that is, if my Juicy Fruit lovin' 9-year-old stays away from my package and lets me do what I've gotta do!!! LOL! Happy tomato-watchin'! Thanks for all the great advice! JeannieConnie Griffis wrote: I was the meany that said get

rid of the possum, hey but that's cool. As to the moles, I know you don't like terminating things, but they will make places in your yard that will flip you end over teakettle and we both know that if you fall hard enough you can break things. The tunnels they build don't look like they would cave in like they do, but when they give way under your foot it's trouble. By the way they are really ugly if that helps. To bad your dog hasn't taken an interest in them, my son's dog loves to catch them. I know, I know, yuck. Trust me I don't like to kill things either, I will catch a rain frog and walk it all the way out to a plant preferably near water rather than have it die. But living in the country like I used to, at times it became necessary to get rid of uninvited guests. Bye for now///Conniemosaicgirl1

wrote: Connie, The moles/voles have eaten my front bed completely. I went to Home Depot and got some poison but I just couldn't do it. When they finish eating that bed they will move on. Since I have been sick just the thought of killing something makes me sick to think about it. The poison was called "Poison Peanuts". I thought at least they would think they were having a treat...just figured they needed to be alive. Don't think I am telling you not to poison yours - they are terrible pests. Just let me know if you hear of a humane treatment. Thanks. Terri G. > Hi Everybody, Hope everything is going ok with you all. > > I have a question if you don't mind. I have had trouble off and on with an unusual pain mostly in the right side of my head above my ear. 2 of 3 times this pain has felt like someone stuck a 38 to my head and pulled the trigger, the only thing that I imagine would be different was it took a while for the pain to stop, and the very last time this happened it felt like something went up my carotid to my head, dummy here even tried to catch it before it got to the top. I have also had this funny jab in my head off and on

for a while, but usually they are spaced out pretty good. All of a sudden this has changed in the last 2 weeks, the pain has started coming more often. I get a less severe pain almost always in the same spot as the other that feels like someone is trying to push something through my head, it hurts like the dickens but doesn't last as long as the other, the difference is it has started making me dizzy and nauseous, which lasts for 20 or 25 minutes even> though the pain has stopped. It's never done that before. What is this? Any ideas?> > I know you guys are not doctors, but I trust your answers more. You have been there and seem to understand the weird way I ask a question. Sorry about that by the way.> > As always//Connie> > ---------------------------------> How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates. > > > ---------------------------------> Love cheap

thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2�/min with Yahoo! Messenger with Voice. > > __________________________________________________>

Share this post


Link to post
Share on other sites
Guest guest

Well, Bruce I have bad news again. I am on Zero on both tanks of Liquid and I called and said I have no oxygen. The response was from corry of Alliance: I am not supposed to deliver liquid oxygen during the weekend but I can maybe drop by a tank in the afternoon. But I am not supposed to give liquid during the weekend. " That means I will be without oxygen all weekend, and, Monday because I have a doctors appointment in Phoenix and wont' be able to fill the tanks. I told Cory to do what he thinks best. Have you ever heard of such a thing. Now it was my fault that I missed them on Tuesday to fill my tanks. I had to pick up a friend from the hospital who's husband had just been taken to ER and she is blind and I forgot it was Tuesday. So, I missed them. They however did not call me and come back. In fact they did call me and he said: You are on your second tank. That should do you until next Tuesday but if not call. He didn't want to cme back to me. I then called on Friday and told the office that I was running out of air and they said well, call us on Monday if you need air. What is wrong with this group?????? They are going to leave me at best without oxygen until this afternoon and it is 8:30am now and at worst with no oxygen for days. This can't be leagal. This time I am going to report them if I can figure out where to report them. It doesn’t make sense to not deliver liquid during the weekend??? Does it???? No one wanted to return to my home to fill my tanks during the week. Unbeliveable. I don't understand how they can get away with that. If you are on oxygen 24/7 and you have no oxygen no matter what or how that happened they need to get their asses over and give you Oxygen. It is rediculous that if you miss their truck for whatever reason you are penalized with no air. Unbeliveable! So, I will be without and there is nothing I can do about it. Joyce

Questions> >> >> > Good evening. I just recieved the letter from Jewish to my doctor> and I cannot understand it at all. I don't know what the initialsmean> nor the numbers. It says for instance I have Pulmonary Hypertensionand> then there is a number with RAP after it. Have no idea.> >> > But my question is: Jewish wants me to get an open biopsy> multilobe. What does that mean? Does that mean both lungs? And, Isee> the surgeon on Monday what questions should I ask him? Thank You,Joyce> Rudy AZ> >>

Share this post


Link to post
Share on other sites
Guest guest

Joyce,

I know this must be so very frustrating for you. Most oxygen suppliers don't make deliveries of any kind on weekends except for emergencies. So for the future keep that in mind. In the meantime if this person has said they will bring you oxygen this afternoon then you need to do what you have to to make sure you or someone else is there to accept the delivery.

That same thing needs to happen in the future for your regular deliveries. I know that things come up and you are so kind to give your friend a ride but you need to put yourself at the top of your list of priorities. Perhaps waiting for your delivery and then going to get your friend.

It's difficult I think especially for women to put ourselves ahead of others. We're used to always doing it the other way. We say 'yes, of course I will' without even thinking about it. If you know your oxygen is going to be delivered on a specific day someone has to be there. Have they shown you how to tell when your supply is running low? You should never ever be in a situation where you just run out. It's dangerous. If I ever ran out of oxygen I would have to call 911 and do nothing but sit quietly till the paramedics arrived. I hope you're keeping a close watch on your sats today. If they get too low, please don't mess around. Just get to a hospital where they can get you on O2 in the ER and they will call your O2 supplier and hound them to make a delivery.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, April 25, 2009 11:44:57 AMSubject: Re: Re: Questions

Well, Bruce I have bad news again. I am on Zero on both tanks of Liquid and I called and said I have no oxygen. The response was from corry of Alliance: I am not supposed to deliver liquid oxygen during the weekend but I can maybe drop by a tank in the afternoon. But I am not supposed to give liquid during the weekend. " That means I will be without oxygen all weekend, and, Monday because I have a doctors appointment in Phoenix and wont' be able to fill the tanks. I told Cory to do what he thinks best. Have you ever heard of such a thing. Now it was my fault that I missed them on Tuesday to fill my tanks. I had to pick up a friend from the hospital who's husband had just been taken to ER and she is blind and I forgot it was Tuesday. So, I missed them. They however did not call me and come back. In fact they did call me and he said: You are on your second tank. That should do you until next Tuesday but if not call. He didn't want to cme back to me. I

then called on Friday and told the office that I was running out of air and they said well, call us on Monday if you need air. What is wrong with this group?????? They are going to leave me at best without oxygen until this afternoon and it is 8:30am now and at worst with no oxygen for days. This can't be leagal. This time I am going to report them if I can figure out where to report them. It doesn’t make sense to not deliver liquid during the weekend??? Does it???? No one wanted to return to my home to fill my tanks during the week. Unbeliveable. I don't understand how they can get away with that. If you are on oxygen 24/7 and you have no oxygen no matter what or how that happened they need to get their asses over and give you Oxygen. It is rediculous that if you miss their truck for whatever reason you are penalized with no air. Unbeliveable! So, I will be without and there is nothing I can do about it. Joyce

Questions> >> >> > Good

evening. I just recieved the letter from Jewish to my doctor> and I cannot understand it at all. I don't know what the initialsmean> nor the numbers. It says for instance I have Pulmonary Hypertensionand> then there is a number with RAP after it. Have no idea.> >> > But my question is: Jewish wants me to get an open biopsy> multilobe. What does that mean? Does that mean both lungs? And, Isee> the surgeon on Monday what questions should I ask him? Thank You,Joyce> Rudy AZ> >>

Share this post


Link to post
Share on other sites
Guest guest



Yes, it was my fault for not being there when they came but I called in the weekday to ask them to come and they refused to make a delivery. That shouldn't be. And, yes, I should have told her to wait but you can wait forever for them to come and fill your tanks. I guess I will watch TV in Bed this weekend. That will keep my oxygen in the low 90's. That will teach me to not be here for them. Joyce PS isn't not having oxygen to breath and emergency?

Questions> >> >> > Good evening. I just recieved the letter from Jewish to my doctor> and I cannot understand it at all. I don't know what the initialsmean> nor the numbers. It says for instance I have Pulmonary Hypertensionand> then there is a number with RAP after it. Have no idea.> >> > But my question is: Jewish wants me to get an open biopsy> multilobe. What does that mean? Does that mean both lungs? And, Isee> the surgeon on Monday what questions should I ask him? Thank You,Joyce> Rudy AZ> >>

Share this post


Link to post
Share on other sites
Guest guest

Joyce R, I have a suggestion for you. Have your 02 Co. bring a few e-tanks for you to have for back-up. I think we all or just about all have them on hand just in case of emergency. I am amazed they won't make a trip and bring oxygen to you. I am so sorry you are going through this. I think I would insist on a back up system.  Medicare will pay for what ever supplies you need. They get a certain amount per month and try to get by as cheaply as they can. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Yes, it was my fault for not being there when they came but I called in the weekday to ask them to come and they refused to make a delivery. That shouldn't be. And, yes, I should have told her to wait but you can wait forever for them to come and fill your tanks. I guess I will watch TV in Bed this weekend. That will keep my oxygen in the low 90's. That will teach me to not be here for them. Joyce  PS isn't not having oxygen to breath and emergency? Questions> >> >> > Good evening. I just recieved the letter from Jewish to my doctor> and I cannot understand it at all. I don't know what the initialsmean> nor the numbers. It says for instance I have Pulmonary Hypertensionand> then there is a number with RAP after it. Have no idea.> >> > But my question is: Jewish wants me to get an open biopsy> multilobe. What does that mean? Does that mean both lungs? And, Isee> the surgeon on Monday what questions should I ask him? Thank You,Joyce> Rudy AZ> >>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...