new to this

[Guest guest]

Epilepsy is very individual. I found the meds I took didn't work and/or had such

horrible side effects, I'd rather have the seizures. For me, low carb dieting

seems to work the best, and I'm starting to experiment with alternative

treatments.

You might have to change your idea of what a " normal life " is. I actually have

found some up sides to epilepsy, including meeting some people I might have

never met had I not developed the condition. And I can use the seizures as an

excuse to get out of some things I don't want to do. " Oh, I'd love to go

swimming...but I'm worried I might have a seizure.. "

Do you have auras that give you enough time to go lie down?

Pepper

> From: carolcal2000 <carolcal2000@...>

> Subject: [ ] New to this

>

> Date: Sunday, September 7, 2008, 9:23 PM

> I recently had my 1st seizure in June and thought I had

> gotten a little stability back when I

> had a bad reaction to the medication and then very recently

> had another seizure. I am

> having such a hard time getting back into a positive state

> of mind and need to know how to

> deal with living with seizures and get back a normal life.

> I am also afraid of being alone.

>

>

> ------------------------------------

>

>

[Guest guest]

Hi Carol:

How old are you?

are you approaching menopause? or are you a teenager getting your period?

Hormonal changes can trigger seizures in people.

I have gotten a lot of relief with bio identical hormones

I would be happy to talk to you about it if this is your case.

good luck,

linda

[ ] New to this

I recently had my 1st seizure in June and thought I had gotten a little

stability back when I

had a bad reaction to the medication and then very recently had another seizure.

I am

having such a hard time getting back into a positive state of mind and need to

know how to

deal with living with seizures and get back a normal life. I am also afraid of

being alone.

[Guest guest]

-Good Afternoon I was sad to hear you are feeling down. My name is

and I have had seizures for about 5 or 6 years now. I am 35

years old and not quite sure why it has happened to me. I have also

now DVT and another clotting factor diease. (But please don't make me

spell it). LOL Living with Epilepsy is something we have to do now

that we have found out. Living a normal life with Epilepsy? Ya you can

do it's just a little change if your everyday life. Afaird of being

alone I know what you mean. The diease took something aways from me

for a while. They told me I could not ride my Motorcyle!

You know what I said ok, I can't ride so guess what? I got on the back

I have now been seizure feel for over a year going on two and if it

was not for the help of some people on this chat group (you know who

you are )I have a feeling I would have lost it. So use it we will all

talk and share and be there for all.

-- In , " carolcal2000 " <carolcal2000@...>

wrote:

>

> I recently had my 1st seizure in June and thought I had gotten a

little stability back when I

> had a bad reaction to the medication and then very recently had

another seizure. I am

> having such a hard time getting back into a positive state of mind

and need to know how to

> deal with living with seizures and get back a normal life. I am also

afraid of being alone.

>

[Guest guest]

Hi carol,

be strong n read more,,,u r nt alone...

tjlawsonn <tjlawsonn@...> wrote:

-Good Afternoon I was sad to hear you are feeling down. My name is

and I have had seizures for about 5 or 6 years now. I am 35

years old and not quite sure why it has happened to me. I have also

now DVT and another clotting factor diease. (But please don't make me

spell it). LOL Living with Epilepsy is something we have to do now

that we have found out. Living a normal life with Epilepsy? Ya you can

do it's just a little change if your everyday life. Afaird of being

alone I know what you mean. The diease took something aways from me

for a while. They told me I could not ride my Motorcyle!

You know what I said ok, I can't ride so guess what? I got on the back

I have now been seizure feel for over a year going on two and if it

was not for the help of some people on this chat group (you know who

you are )I have a feeling I would have lost it. So use it we will all

talk and share and be there for all.

-- In , " carolcal2000 " <carolcal2000@...>

wrote:

>

> I recently had my 1st seizure in June and thought I had gotten a

little stability back when I

> had a bad reaction to the medication and then very recently had

another seizure. I am

> having such a hard time getting back into a positive state of mind

and need to know how to

> deal with living with seizures and get back a normal life. I am also

afraid of being alone.

>

---------------------------------

Try cool new emoticons, skins, plus more space for friends. Download

Messenger Singapore now.

[Guest guest]

You are correct - epilepsy is very individual and varies greatly from person to

person.

 

However - I cannot imagine that I'd want to have a seizure over putting up with

the side effects of some medicines.   See...I like to drive.....and if I ever

had a seizure while driving and injured someone else - the side effects of meds

would seem selfish compared to being responsible.........

 

AED's can take a while to work.  Each person reacts differently to any kind of

medicine.

 

Also, auras do not accompany every seizure.   

 

Just my opinion -  I'm by no means an expert.......

> From: carolcal2000 <carolcal2000>

> Subject: [ ] New to this

>

> Date: Sunday, September 7, 2008, 9:23 PM

> I recently had my 1st seizure in June and thought I had

> gotten a little stability back when I

> had a bad reaction to the medication and then very recently

> had another seizure. I am

> having such a hard time getting back into a positive state

> of mind and need to know how to

> deal with living with seizures and get back a normal life.

> I am also afraid of being alone.

>

>

> ------------ --------- --------- ------

>

>

[Guest guest]

Pepper, Did you know that they are now using a Modified Atkins Diet (MAD) to

control seizures? They call it modified because they restrict carbohydrates

more than the regular Atkins Diet. Some people find the MAD diet easier to

follow than the ketogenic diet, and it does not require a hospitalization to

begin the diet. Like the ketogenic diet, the MAD diet should be done only

under the care of a doctor. Check out the following websites:

http://www.atkinsforseizures.com/

http://www.squidoo.com/atkinsforseizures

Helen

[Guest guest]

>

> You are correct - epilepsy is very individual and varies greatly

from person to person.

>  

> However - I cannot imagine that I'd want to have a seizure over

putting up with the side effects of some medicines.

Different storkes for different folks. While on one AED, I ordered a

bunch of stuff off of infomercials and subscribed to magazines with no

memory of doing so AND it didn't stop the seizures. None of the AEDs I

tried did.

Pepper

[Guest guest]

Do you still have seizures? 

 

If so - what stopped yours?

From: hey_pep <hey_pep@...>

Subject: [ ] Re: New to this

Date: Thursday, September 18, 2008, 11:05 PM

>

> You are correct - epilepsy is very individual and varies greatly

from person to person.

>  

> However - I cannot imagine that I'd want to have a seizure over

putting up with the side effects of some medicines.

Different storkes for different folks. While on one AED, I ordered a

bunch of stuff off of infomercials and subscribed to magazines with no

memory of doing so AND it didn't stop the seizures. None of the AEDs I

tried did.

Pepper

[Guest guest]

Here is the rest of my original quote about what I consider responsibility.....

 

" However - I cannot imagine that I'd want to have a seizure over putting up with

the side effects of some medicines.   See...I like to drive.....and if I ever

had a seizure while driving and injured someone else - the side effects of meds

would seem selfish compared to being responsible......... "

 

Not sure why it was omitted by the one that responded...but I did want all to

see what I originally said.    

 

From: hey_pep <hey_pep@...>

Subject: [ ] Re: New to this

Date: Thursday, September 18, 2008, 11:05 PM

>

> You are correct - epilepsy is very individual and varies greatly

from person to person.

>  

> However - I cannot imagine that I'd want to have a seizure over

putting up with the side effects of some medicines.

Different storkes for different folks. While on one AED, I ordered a

bunch of stuff off of infomercials and subscribed to magazines with no

memory of doing so AND it didn't stop the seizures. None of the AEDs I

tried did.

Pepper

[Guest guest]

> From: Judles <judles50@...>

> Subject: Re: [ ] Re: New to this

>

> Not sure why it was omitted by the one that responded...but

> I did want all to see what I originally said.

I omitted it because it had nothing to do with my reply.

Pepper

[Guest guest]

> From: Judles <judles50@...>

> Subject: Re: [ ] Re: New to this

>

> Date: Saturday, September 27, 2008, 3:32 AM

> Do you still have seizures?

>

> If so - what stopped yours?

>

I hesitate to say I no longer have seizures, but there is a longer and longer

time between them. I think diet (low carb) has helped a lot, as well as

chiropractic and Quantum Touch.

Pepper

[Guest guest]

In reply to Christ and Pearl,

I had extreme fatigue beginning in 2004; by summer 2005 it was so much of a problem that I underwent several tests on my heart, including a cath, because when I had experienced tiredness three years before, I was found to have a very slow heart rate and ended up with a pacemaker.

However, I was diagnosed with CLL/SLL in late 2005. A bone marrow biopsy revealed a 30% involvement in my bone marrow, and I began treatment with Rituxan infusions. After the third weekly infusion, I saw my hematologist/oncologist, and I was able to report that I wasn't nearly as tired as before. He said that was because those cancer cells in my bone marrow were being destroyed. I continued the Rituxan, having the sixth infusion near the end of March, 2006 and I haven't experienced that tiredness since. I exercise regularly, attending a Curves for Women center four to five times weekly, and lead a very active life of housework, gardening, volunteering, etc.

I don't know if this is helpful, but if you haven't had a bone marrow biopsy, you might want to ask about it. I only know what happened in my case, and it may not be something for either of you.

I do know that the posts on this site encourage us to see CLL/SLL experts. If that is not possible I think one needs to have someone who is very experienced in the field of this form of lymphoma, at least.

Norma Oxley

Age 71

[Guest guest]

Hi I'm kind of new to this group also. I was diagnosed 2 years ago with CLL. I also experience extreme fatigue and my oncologist said that this was not caused by my CLL. I find this odd because in the past I had lots of energy. I'm very curious to see if other people on this website experience fatigue with their cll. Pearl

From: coalcrkr2001 <coalcrkr2001@...> Sent: Sunday, August 23, 2009 7:12:52 PMSubject: New to this

Hello,Thank you all for letting me join.I am a 50 year old male who was diagnosed with CLL in November of 2008. Aside from fatigue (sometimes nearly debilitating- -missed a month of work last year for unexplained fatigue prior to diagnosis), some upper left abdominal discomfort and discomfort under the left armpit I'm fine. Although I had to change my life style to not include nearly as much exercise and/or other types of physical exertion and stress.Hopefully (and unfortunately. ..) someone from the group may be able to answer these questions:1. Have any of you experienced near-debilitating fatigue with blood levels that, at least a few months ago, were pretty good for someone with cll? My doctor said that the fatigue may or may not be caused by cll at this point--not a whole lot of help.... The reason that I ask question 1 is that it is my understanding that fatigue is one reason to trigger treatment. As much

as I would like to feel somewhere near normal again it would be a shame to start treatment and find out that it will not help my fatigue. Unfortunately (or fortunately) I don't know anyone with cll to see what their experiences have been. Again, new to all this crap....2. How can I find a doctor, or medical center, in NE Pennsylvania that has lots of experience with cll? My doctor seems intelligent, competent and caring but I'm not sure that she has been practicing long enough to see many patients complete the cll cycle and to have intimate knowledge of their problems and progression through the disease.Any information would be greatly appreciated.Thanks,Chris

[Guest guest]

Dear Norma, thanks for your info. I did have a bone marrow and CAT scan. My oncologist says I'm still in 0 stage. I don't exercise as much as I should. I spend most of my time watching my little grandchildren 4 times a week while their parents are at work. I make myself do all the things necessary to keep a 2 and 3 year old occupied but I guess I just feel like it would be so wonderful to wake up just one morning feeling energetic. Maybe I should just make myself ride the exercise bike I have in my study instead of just looking at it. Pearl

From: "norcarley@..." <norcarley@...> Sent: Monday, August 24, 2009 10:21:41 AMSubject: RE: New to This

In reply to Christ and Pearl,

I had extreme fatigue beginning in 2004; by summer 2005 it was so much of a problem that I underwent several tests on my heart, including a cath, because when I had experienced tiredness three years before, I was found to have a very slow heart rate and ended up with a pacemaker.

However, I was diagnosed with CLL/SLL in late 2005. A bone marrow biopsy revealed a 30% involvement in my bone marrow, and I began treatment with Rituxan infusions. After the third weekly infusion, I saw my hematologist/ oncologist, and I was able to report that I wasn't nearly as tired as before. He said that was because those cancer cells in my bone marrow were being destroyed. I continued the Rituxan, having the sixth infusion near the end of March, 2006 and I haven't experienced that tiredness since. I exercise regularly, attending a Curves for Women center four to five times weekly, and lead a very active life of housework, gardening, volunteering, etc.

I don't know if this is helpful, but if you haven't had a bone marrow biopsy, you might want to ask about it. I only know what happened in my case, and it may not be something for either of you.

I do know that the posts on this site encourage us to see CLL/SLL experts. If that is not possible I think one needs to have someone who is very experienced in the field of this form of lymphoma, at least.

Norma Oxley

Age 71

[Guest guest]

Hello Pearl,

Thanks for responding! Yeah, in the same boat with fatigue--went from almost unlimited energy to less than average.... The funny thing is it happened right about the time that I turned 50 and thought that it was old age....

Chris

From: pearl young <youngpear2004@...>Subject: Re: New to this Date: Monday, August 24, 2009, 10:50 AM

Hi I'm kind of new to this group also. I was diagnosed 2 years ago with CLL. I also experience extreme fatigue and my oncologist said that this was not caused by my CLL. I find this odd because in the past I had lots of energy. I'm very curious to see if other people on this website experience fatigue with their cll. Pearl

From: coalcrkr2001 <coalcrkr2001>groups (DOT) comSent: Sunday, August 23, 2009 7:12:52 PMSubject: New to this

Hello,Thank you all for letting me join.I am a 50 year old male who was diagnosed with CLL in November of 2008. Aside from fatigue (sometimes nearly debilitating- -missed a month of work last year for unexplained fatigue prior to diagnosis), some upper left abdominal discomfort and discomfort under the left armpit I'm fine. Although I had to change my life style to not include nearly as much exercise and/or other types of physical exertion and stress.Hopefully (and unfortunately. ..) someone from the group may be able to answer these questions:1. Have any of you experienced near-debilitating fatigue with blood levels that, at least a few months ago, were pretty good for someone with cll? My doctor said that the fatigue may or may not be caused by cll at this point--not a whole lot of help.... The reason that I ask question 1 is that it is my understanding that fatigue is one reason to trigger treatment. As

much as I would like to feel somewhere near normal again it would be a shame to start treatment and find out that it will not help my fatigue. Unfortunately (or fortunately) I don't know anyone with cll to see what their experiences have been. Again, new to all this crap....2. How can I find a doctor, or medical center, in NE Pennsylvania that has lots of experience with cll? My doctor seems intelligent, competent and caring but I'm not sure that she has been practicing long enough to see many patients complete the cll cycle and to have intimate knowledge of their problems and progression through the disease.Any information would be greatly appreciated.Thanks,Chris

[Guest guest]

Welcome Mustang girl,

You will find plenty of information here and learn steps to get the

Samter's in control. Please take some time to read through the files

and links. Also,try the search box for some of your questions.

Desensitization has helped me, but it is only on piece of the puzzle.

We are all a little different as far as what remedies work or not. I

have tried all of them before settling in on what is best for me.

Pam

mustanggirlnz17 wrote:

> Hi there, i just joined up this group as i want to find out if aspirin

desensitization has worked for those with samsters. anyone got any feedback on

it. alos just curious as im just finding out now about this samsters stuff. can

anyone answer this, if its aspirin related, why do we feel so horrible all the

time, not just hwne we take aspirin? I heard it described as asthma of the nose

>

>

>

> ------------------------------------

>

>

[Guest guest]

Brando,Welcome. You are in the right place. We don't know all the answers but nobody does! But we can definitely support you. I was diagnosed in 2004 with Hep C. I had it for 24 years when I was diagnosed and nobody had ever caught on that I had it. Nobody ever looked. I went thru 48 weeks of Ribavirin and Peg-Interfuron treatments in 2005-2006. I completed the treatment and am now on the other side, virus is undetectable. Everyone who goes thru this particular treatment has a different reaction. No two people are alike. It can be easy as all get out or it can be a difficult path. I know of people who sailed thru treatment and I know of

people who had a really hard time. It just depends on the person. My experience is more on the hard time end of things and most people that I have talked to or been around on this forum did not have the side effect that I did. Everybody is different. It could be as mild as flu like symptoms for a day after your shot to feeling like crap for 48 weeks. There are many people here that worked thru their entire treatment and got thru it without much difficulty. I'm not one of them but that's just me. Not going to give you horror stories, I will just say it wasn't pleasant but it worked. And I can tell you that I would jump in and do it again tomorrow if the virus rears its ugly head again. So it can't have been that bad huh? Or actually, my will to live is stronger than anything. You're going to be fine.. We are all here to help and support you. Ask any

questions you'd like. Somebody is usually on here all day and/or night. Okay everybody... Introduce yourselves!Teri in ChicagoFrom: stella <brandostella@...> Sent: Tue, May 25, 2010 3:00:40 PMSubject: [ ] New to this

Hello I have been recently diagnosed with Hep C and just joined the group. My Dr. recommended and subsequently scheduled me to start the 48 week interferon and ribavirin treatments in September. I'm pretty nervous about it and I was wondering if others have experiences to share. Thanks - Brando

[Guest guest]

Hey Brando,

I don't think nervous described me more like a shear panic. I just did 24 weeks of TX and it wasn't bad for me. I was undectable for a while but first month check up it was back. I get TX meds tomorrow to re start. I actually can't wait to start because I can't deal with the fatigue and aches.

The worries of tx are the worst. I really had no trouble during tx, I m single with 5 kids and worked and ran my butt off. I was tired but only a few days in the begining did I crap out on the couch.

Everyone in this group truely cares and is walking or will walk in your shoes and for those of them that have walked in our shoes and are past this will carry you thru with any questions or concerns. The worst part for me was the anxiety of the horror stories of TX.

Good Luck and welcome to the family.

Pam

[ ] New to this

Hello I have been recently diagnosed with Hep C and just joined the group. My Dr. recommended and subsequently scheduled me to start the 48 week interferon and ribavirin treatments in September. I'm pretty nervous about it and I was wondering if others have experiences to share. Thanks - Brando

[Guest guest]

Hi Brando

Welcome to the group.

I havent done TX yet, so anything I have to say is second hand.

But we have folks here just DX'd like yourself and me, some in TX, some post TX, and some further along.

I do know is that you will find plenty of info to your questions here.

Also that TX side effects are not always 'that' bad.

Some folks have no problem, for others life is hell, and MOST folks do have some sides.

Another thing is that for most people, treating is a do-able thing.

Everyone is different.

You are not alone in your fear.

Brando, no question is too big, or too small, or stupid.

Feel free to ask away, and even make your own comments.

We are here for you, my friend.

You are not alone.

I have been gathering HCV info and creating a Library.

It starts with 'just diagnosed' and goes onwards.

Please use it. There is tons of info for your use about just everything.

Click this link:

http://health.dir./group/ /links

love

don in ks

From: stella <brandostella@...>Subject: [ ] New to this Date: Tuesday, May 25, 2010, 3:00 PM

Hello I have been recently diagnosed with Hep C and just joined the group. My Dr. recommended and subsequently scheduled me to start the 48 week interferon and ribavirin treatments in September. I'm pretty nervous about it and I was wondering if others have experiences to share. Thanks - Brando------------------------------------

[Guest guest]

BrandoAs others here have said - we will be with you throughout your entire journey, as long as you want to participate.Personally, I have been on treatment (TX) twice and my reaction to it was different each time. However, I am now HCV negative.Can you please enlighten us with a few facts that perhaps baffled you; but, we mostly have experience with. What Geno type are you and did you understand the staging and where you are?? They might have given you your viral load number and the AST and ALT values are important. AST and ALT are your liver enzymes. Finally, it is your right to receive a copy of all of your test report even if you don't think you'll understand them. I'll just about guarantee that you will come out the other end of

this experience knowing a whole lot more about your body than you ever thought you would.Remember, we are all here for you and your walk.Gloria

Hello I have been recently diagnosed with Hep C and just joined the group. My Dr. recommended and subsequently scheduled me to start the 48 week interferon and ribavirin treatments in September. I'm pretty nervous about it and I was wondering if others have experiences to share. Thanks - Brando

[Guest guest]

i just found out my son will have to wear a helmet and i am having a rough time

with this. yes, i know it's nothing life threatening, but i cant help but cry

when i think about it. anyone else feel the same way?

thanks!

[Guest guest]

I felt the same way at first. But then I was so relieved that there was the helmet to correct my daughters headshape. It will get easier.

Angie (Jenna STAR grad 2003)

new to this

i just found out my son will have to wear a helmet and i am having a rough time with this. yes, i know it's nothing life threatening, but i cant help but cry when i think about it. anyone else feel the same way?thanks!

[Guest guest]

I felt the same way, but was pretty good with it by the time her band arrived.

And within 2 weeks I could see changes, so then I was quite happy to keep it on.

Best of luck with it.

-christine

sydney, 4.5 yrs, starband grad

>

> i just found out my son will have to wear a helmet and i am having a rough

time with this. yes, i know it's nothing life threatening, but i cant help but

cry when i think about it. anyone else feel the same way?

> thanks!

>

[Guest guest]

I felt a bit sad when I found out my son needed to wear his but figured I would regret it more if I didn't do it. And when you do come to that decision you might as well have fun with it. Decorate the helmet. You end up seeing how adorable he'll look!Sent from my Verizon Wireless BlackBerryFrom: "christineashok" <christineashok@...>Sender: Plagiocephaly Date: Fri, 24 Sep 2010 03:25:00 -0000<Plagiocephaly >Reply Plagiocephaly Subject: Re: new to this I felt the same way, but was pretty good with it by the time her band arrived. And within 2 weeks I could see changes, so then I was quite happy to keep it on.Best of luck with it.-christinesydney, 4.5 yrs, starband grad>> i just found out my son will have to wear a helmet and i am having a rough time with this. yes, i know it's nothing life threatening, but i cant help but cry when i think about it. anyone else feel the same way?> thanks!>

[Guest guest]

I was very upset when I found out my baby's head wasn't rounding out. Now that I

made the decision for the Doc band I am OK. I did feel the same way as you but

decided that this is such a short time in the band compared to the rest of her

life. I would feel worse if I didn't do anything and she grew up with that head.

>

> i just found out my son will have to wear a helmet and i am having a rough

time with this. yes, i know it's nothing life threatening, but i cant help but

cry when i think about it. anyone else feel the same way?

> thanks!

>