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[Guest guest]

Just saying Hi! Seems that Yahoo has been bouncing messages from all my groups. I hope it's all straight now.

P.

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[Guest guest]

Hi ,

Its nice to have a great family support. As far as headaches, with neurosarc, it is just part of the disease. I have headaches that move all over, Ihave even had a weird thing going on in my head, and my dr. says that its migranes, well they really don't hurt, its just like that sound you get when you tv channel goes off the air, and its that crackling, hissing like sound. Please keep up with your dr's appts. As for your friend, I am very sorry to hear of that. We too had lost a great man here of 47, a fireman, he was at a firefighters meeting one night, and at the end of the meeting, he started to complain of "not feeling well". He was gone in about an hour of a massive heart attack. We really need to work hard at our life to get the most out of it, but when you are sick, it is hard to do that. Please keep in touch

Lots of Love

Lynnebelltown_mac wrote:

this is Matt in Seattle- Saw my nerosarc doctor on friday, said that the pain shifting to the back of my head was not uncommon-still get some pretty bad headaches but they seem to be not as often-wondering if others have had there headaches shift around there head- Am going to San Deigo on Monday with my dad for 2 weeks- he is thinking of moving down there- He currently lives in Cape Town South Africa. Am also concerned about my memmory problems- I seem to forget peoples names - such as doctors, friends etc. and find i need to write down everything. when i get back from San Diego i will be going to Denver to Nat. Jewish hospital for a few days-They are my back-up to make sure that my docs in Seattle are treating me correctly. I thought of moving to Denver but after going there two years ago i decieded that I would not like living

there- although I liked themedical treatment i got at the Hospital there. My other major medical problem is that i have had it in my eyes for the past two years. They are able to control it and make it go away but than when they take me off the meds or they reduce it it comes right back. Recently i have read several others posts concerning how our friends have deserted us. It amazes me that people aren't more sympathtic to our situation. We didnt chose to get sick and you would think that our friends could be there to help/ be supportive. I was a social worker for 19 years before i stopped working and several times helped friends get services they needed- but have yet had anyone offer to help me- I was in a long term relationship(10 years) with someone who died suddenly of a heart attack in Oct 2003. It has been hard dealing with that on top of my illness-This person was a nurse and very supportive of me in dealing with

Sarc.I dont want to seem like all i am doing is complaining so I do want to say that overall im doing ok. my family is helpfull and supportive . Just wanted you to know more about me - Take care- in Seattle-------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi Matt In Seatle,

I didn't think that you were just complaining, but from what I can

tell, even if you needed to just complain to the group you could. I

am sorry to here about losing the person that was so close to you.

I know that is very hard, and probably effected your illness. I

know stress makes mine worse.

I too, was a social worker before I stopped working. I worked

primarily with children in foster care or who had been abused. But

I think that people who go into that work often are the type that

will help everyone and give everything to their friends. I know I

did, and now that I can't they are all gone. My goal this year is

to find people who can see behind what I don't do anymore

(especially for them) and accept me for who I am now and who I might

become. I haven't figured out how to do that yet, but I am working

on it.

I wish you the best. Take it easy on your trip with your dad. I am

sure you will want to do alot because you don't see him much, but

remember that over doing it has such a high cost! But above all,

have fun and enjoy yourself. We will be thinking about you while

you are gone.

in Syracuse, NY

>

> this is Matt in Seattle- Saw my nerosarc doctor on friday, said

that the pain shifting to the

> back of my head was not uncommon-still get some pretty bad

headaches but they seem to

> be not as often-wondering if others have had there headaches shift

around there head-

> Am going to San Deigo on Monday with my dad for 2 weeks- he is

thinking of moving

> down there- He currently lives in Cape Town South Africa. Am also

concerned about my

> memmory problems- I seem to forget peoples names - such as

doctors, friends etc. and

> find i need to write down everything. when i get back from San

Diego i will be going to

> Denver to Nat. Jewish hospital for a few days-They are my back-up

to make sure that my

> docs in Seattle are treating me correctly. I thought of moving to

Denver but after going

> there two years ago i decieded that I would not like living there-

although I liked the

> medical treatment i got at the Hospital there. My other major

medical problem is that i

> have had it in my eyes for the past two years. They are able to

control it and make it go

> away but than when they take me off the meds or they reduce it it

comes right back.

> Recently i have read several others posts concerning how our

friends have deserted us. It

> amazes me that people aren't more sympathtic to our situation. We

didnt chose to get sick

> and you would think that our friends could be there to help/ be

supportive. I was a social

> worker for 19 years before i stopped working and several times

helped friends get services

> they needed- but have yet had anyone offer to help me-

> I was in a long term relationship(10 years) with someone who died

suddenly of a heart

> attack in Oct 2003. It has been hard dealing with that on top of

my illness-This person

> was a nurse and very supportive of me in dealing with Sarc.

> I dont want to seem like all i am doing is complaining so I do

want to say that overall im

> doing ok. my family is helpfull and supportive . Just wanted you

to know more about me -

> Take care- in Seattle-------

[Guest guest]

--- FluckigerS@... wrote:

>

> I take 75 mg of Topamax in the AM & PM (wish I had

> the weight loss) but it

> did help a lot with my headaches. I've had chronic

> headaches since I was like

> 9. The Topamax has made mine go from a bad 10 to a

> living 4. So I really love

> Topamax, it has made a world of difference in my

> life.

>

>

>

> Hi Matt,

> I get the " sarc headaches " too. To me it

> feels like a vice is

> squeezing my head from both sides and the top of my

> head gets really hot. My

> neurologist prescribes Topomax for me . It works

> well for the headaches and also

> made me lose 15 lbs! That was an extra bonus. I

> have also been on

> Neurontin, but that made me spacey and drowsy.

> Have you tried type of med from the dr for the

> headaches? Just

> wondering...... Debbie

>

> Debbie - thanks for the message- My doc's have tried

several meds that help tempareally but nothing seems

to make my headaches go away permanently/ My doc said

it could take up to three more months before i see any

real improvment in the headaches as he said it takes

that much time for the NS to get better I am going to

go to Nat Jewish hosp, in Denver in June to see what

they can do to help. I need to go on that med that

helped u lose 15 pounds. I need to lose some weight.

Matt in seattle,.

>

>

>

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