ot reports

[stella]

HI ALL,
WAS WONDERING WHY THEIR ARE SO FEW NOTES FROM PEOPLE LATELY.
IT SEEMS THERE IS NEVER ANY THING WRITTEN ABOUT HOW PEOPLE ARE FEELING OR HOW THEY ARE DOING ON THEIR MEDS.
i MYSELF AM STILL ON THE GAB BUT NOT AS MUCH ANYMORE. iT MAKES ME SO TIRED. MY DR. HAS NOTHING NEW TO TELL ME SO I AM
WORKING WITH THESE PILLS IN DIFFERENT WAYS.

WOULD LIKE TO SEE SOME FEEDBACK HERE. THIS IS ALL WE HAVE TO GO ON. NOBODY ELSE REALLY UNDERSTAND US. ITS HERE ON THIS
FORUM IS WHERE WE CAN GET ANY HELP AT ALL . SO DROP A NOTE
AND SAY HI . iM SURE IT WOULD HELP US ALL.
BYE FOR NOW,
CANDYSEE

[Jenn]

Hi Candyse. It's good to read your comment. I guess that for me the reason that I don't comment very often is that I spend most of my time just trying to cope with leading as normal a life as possible with this difficult condition and rarely get time at the computer. In New Zealand Gabapentin is very expensive - not subsidised - so the dose level I read that others are on would be unaffordable here. So I find I'm constantly making lifestyle changes to be able to function and still hold down my job with as little medication as poss due to the sedating side affects and prohibitive cost.

I've found this site very useful as a way of encouragement that I'm not in isolation with what I'm experiencing.It is very reassuring to hear other's stories and hear their coping strategies.

It's quite amazing to be able to encourage others from all around the world. What did we do before the internet?

Jenn

[dsauber]

I have given up the beta blockers which left me too lethargic to move and am now on topomax, which is actually a migraine medicine, 100 mg./day, with 100mg./night of primidone (antiseizure med.) with some good results over the last year plus. Still need a shopping cart for long trips but I can do some standing, up to about 10-15 minutes without a complete 'melt down'. That is lots more than I was doing before! another positive side affect is that I dropped off the extra 25 pounds I packed on with the previous medication. I'm wondering if there is such a thing as electric shock or some quick fix??? I'm tired of dealing with this, as I'm sure aren't we all. Is any research being done?

[stella]

hi
THANKS for keeping us up on how you are dealing with this crazy disease.
saw my neurogolist again yesterday. Nothing new to report on that visit.
He does want me to try topomax also. I think i might do that .
Has anyone else tried that drug?
I dont find the gabapentin makes me drowsy now like it did at the beginning. It dosent interfer with any of my other meds.
I still use my walker for shopping and going to the video store..
All my friends are used to how i am now so it isnt a problem in that way.
Take care all, and keep sending notes when you can.
Candyse