And then there were more...

[seizures4ever]

Hi everyone.

The last week has been very hard on me...the last two days, particularly.
I suppose I've had over a hundred auras/simple-partials and five complex-partials. What a living hell.

Last night, after hours, I spoke with my neuro, and she said to take a lorazapam and an extra klonopin along with my other handful of anticonvulsants, and go to bed. This morning I woke up too drugged to walk straight...but no seizures...Until mid-day when all heck broke loose.

I just got off the phone with her again tonight. She is increasing my Zonagran to 100mg every evening. More drugs...

Did I ever mention I hate drugs? Always have. I would really appreciate it if someone out there in our CWE community who has refractory seizures and frequent "status" episodes of any sort would respond. :e: After awhile, I feel like I'm literally trapped inside myself and it is hell. I feel so alone.

Sorry for my language, but if you have ever been status...you know what I'm talking about...and there is almost no other word for it.

Much love to all my friends.
-Julie :flushed:

 

[forward2007]

Sorry to hear about your bad day.

 

[No Shame]

That sounds awful. I know what i have done in the past when i was convulsing at home alone--complex partials for sure. It's to drink as much wine as possible until my brain chemistry literally shifts into a more balanced way. This is the alternative to medication??? I don't like drugs either, but i dont know of anything more than i am contemplating for treatment here. Apparently there are some other methods of trying to avoid triggers with vitamins and actually avoiding situations that cause them, but i dont see that as living either. It's scary to be in that status epi. because you dont want anyone to see you like that. I understand the loneliness, but you're not alone here. = )

 

[brain]

(((((((((( Hugs Julie )))))))))))

Sorry to hear of all you are going through;
Hopefully Zonegran will do the trick! Zonegran
has been so good to me and I will hope it will
be good to you as well! I am now back up to
where I originally was at 400 mg daily.

 

[Cint]

Julie,

I'm sorry you're having such a difficult time. I've been where you are and I agree, it is a living hell! Feeling trapped inside your own body and just wanting to be free. Hopefully, Zonegran will help you.

(((HUGS)))

Cindy