coming off meds anyone?

[kdzalew]

Hi everyone!

I am new to this forum and i want to find out some information from you guys. My story with epilepsy starts when i was 14 years old. Probably in the time when I hit puberty. I had my first seizure at that age. Took Depakote for 2 years and stopped for a while, then had anther seizure at the age of 16. Since then I have been taking medication for about 10 years non-stop. At age 25 I decided I wanted to have a child, so doctor advice that Depakote is not safe and that I should start other medications. I went through so many of them I can't even remember, but I could not adjust to any. I would have severe side effect. I don't know I think my body was just so used to Depakote. On my own I decided to just not take anything and go throughout pregnancy med free. Everything went well. No seizures. Few months after I had the baby I started feeling auras. I tried to go back to meds, but it made me feel even more seizury. So I came off completely and have been off for 6months. Does anyone have this experience, or similar and never had seizure. I had only two in my life and I feel that they are hormone related. Any advice?

Thank YOu

 

[Nakamova]

Hi kdzalew, welcome to CWE!

I don't have your experience, but it sounds very interesting. The hormonal connection to seizures is being explored more and more, and there are treatments that use meds like progesterone as opposed to the standard anti-seizure drugs. if the auras are bothering you, or seem to be progressing, you might ask your neurologist about such hormonal treatments (or find a neurologist who is more familiar with them). We have quite a few members who are looking at such types of treatments.

You might want to keep a symptom/seizure diary if you don't already -- it can potentially reveal any patterns or triggers related to your auras. If they are related to estrogen surges, there are at least two times a month where you might regularly be vulnerable. There may be other triggers as well (things like fatigue or low blood sugar). And many folks have found that changing their nutritional intake makes a difference in their seizure control. Adding certain nutrients (such as magnesium, which can be affected by high estrogen), or going the low-carb, or low-glycemic index route may be something you want to explore.

Congratulations on successfully going off meds, and having a safe and healthy pregnancy. It's not an option for everyone, but I'm glad it worked out for you.

Best,
Nakamova

 

[Lola 1978]

Gosh never had that experience but I hope to come off epilim next year as I want to try for a baby. I also on Tegretol retard. like you I have had epilepsy since I was 14 so I wonder how my body will react to been off certain drugs? Will defo have to come off epilim not sure about the tegretol though.

 

[kdzalew]

Thaks for reply

Thank you guys for quick reply. It definitively helps to know that I am not alone. I really want to look into this hormonal seizure specialist, just to know if it is connected. it is hard to find one tough. it seems like there is not that many of them. I am not denying the fact that the seizure gene is in me. If i have to continue taking seizure meds, so be it, but if there are other alternatives then it would be awesome. We all know how it feels to be on these meds and basically feel slow and retarded. he he.. If I can find a hormone specialist it would be ice. It seems for me that when I take my birth-control pills I don't have any auras, but when it's period week, they come back.
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