Emergency! Can somebody help me?

[Mumfe]

Hi everybody!
I am new here. I have refractory epilepsy and I have tried all available medications on the market. I also had a VNS but my doc had to remove it.

A month ago, I started having urticaria. As I am oversensitive to most medications and as the results for common allergies were negative, the allergist strongly believes that I am having a drug reaction. Problem is: there are no more drugs to treat my epilepsy and I don't meet the criteria to have a surgery.

Everyday, the symptoms are getting worse and I am really weak. Can somebody help me?

They say : keep the faith...it's really hard!

 

[epileric]

I know when I've had trouble with the effects of my meds I try taking them on a full stomach. Sometimes it helps sometimes it doesn't. Also if you're not drinking a lot of water drink more to help your body excrete the medicine faster.

I do feel for you but that's all I can think of right now.

Good luck.

 

[RobinN]

I would think this is possibly the rash that goes along with some of the meds. In fact my daughter was taken off of her last two meds due to the fear that this was occuring.

Are you in contact with your neurologist? Rereading your post I am unclear as to whether you are taking a med right now or not. Could you be more specific?
I would be in contact with your doctor no matter what.

Also have you tried eliminating casein and gluten? Some people see immediate results in skin disorders when this is removed. Just a thought.

 

[Zoe]

I would think this is possibly the rash that goes along with some of the meds. In fact my daughter was taken off of her last two meds due to the fear that this was occuring.

Are you in contact with your neurologist? Rereading your post I am unclear as to whether you are taking a med right now or not. Could you be more specific?
I would be in contact with your doctor no matter what.

Also have you tried eliminating casein and gluten? Some people see immediate results in skin disorders when this is removed. Just a thought.

Robin may be right about the hives as a drug reaction. Can you post more information? Are you taking any meds now? What other ways have you tried to manage your seizures? I had refractory seizures and brain surgery failed. I eventually brought them under control without drugs and have been seizure free since 1998. If you haven't already done so, check out this link:
http://www.andrewsreiter.com/

I'm sorry the drugs didn't work for you but there are many other possibilities to try. The diet Robin mentioned is a place you can start right now. Welcome to the forum!

 

[Bernard]

Hi Mumfe, welcome to the forum. :hello:

There are several non-drug alternatives listed in my chart (see link in signature). Perhaps one of them will work out for you.

 

[speber]

Also not listed in the alternatives...

...try listening to music as a therapy. Not as a cure mind you, but it could help reduce stress and raise your seizure threshold!

I recommend expanding your musical vocabulary with new tunes you've never tried before...this seems to be a good stimulation for the brain as well.

Peace!
Speber
:rock:

 

[brain]

:hello: Mumfe

I read your medication list,
but I am downright confused!

I know one thing ... Zonegran
(brand name) and Zonisamide
(generic) ... IS NOT AVAILABLE
IN CANADA ..

I have known Canadians who are
waiting for Zonegran/Zonisamide
to become available in Canada.

And yet your profile is stating you're
on it?

Here's the Facts on Canada &
Zonegran / Zonisamide:


Zonisamide - Epilepsy Ontario - Canada