anti-convulsants for migraines

[Guest guest]

From personal experience, I know that Depakote (valproic acid) can be very toxic

to a person with Mito. Long before we ever heard the word Mito, my mother who

was dealing with seizures was put on Depakote. It was less than a week before

she was in ICU and the bottom line is she nearly died. There was recovery but

she never walked again and required full care for several months, not being able

to even lift a spoon or a fork to her mouth. It was a few months before she

could eat solids at all and lived on Ensure which was her total nourishment. We

attended to all her bodily needs and used a body hoist to move her from the bed

to her wheechair to the living room chair and then the reverse to go back to

bed. After she passed away, Dr Cohen and Dr Shoffner who never met her both

agreed that she had Mito because of her symptoms.

A few years ago, I purchased the medical records from the hospital where she

was in ICU and written right into those records is the statement that the change

to valproic acid was the cause of her very difficult and rapid decline. The

records stated that she was terminal but getting her back on Dilantin solved her

medical crisis. Just mentioning Depakote gives me a very unpleasant feeling yet

before we knew all this, my son, who is profoundly affected and living in a

group home was put on Depakote for his seizures. He's been on it for several

years. I've tried to have this changed but the doctors who care for him say it

would be more dangerous to take him off it and that he's been on it too long.

So far it hasn't had any ill effects on him and the worst thing I've seen it do

is cause him to lose his hair at a pretty young age. That might not even be the

Depakote because his Dad had early hair loss and I lost all my hair when I was

expecting him. What I'm saying here is that it appears that some people with

Mito can take it but to others, it can be devastating and this is within the

same family.

In our family, Lamictal has been a very successful medication for control of

seizures and we haven't seen any adverse affects except in one granddaughter who

apparently developed Syndrome within a few days of starting it.

One thing that should probably be noted here is that migraines are thought to be

a form or seizure or very close to a seizure. I lived way too many years with

them and had no relief. They totally controlled me when I had them. I remember

well when my mother feared that I had a brain tumor because the pain was so bad.

I spent many years with my head under the blankets holding my head ad keeping my

eyes protected from the light. Mom's remedy was whiskey and hot water. It's

funny when you think about it because that would make me sleep and when I slept,

I didn't feel the migraines. My migraines did not begin to subside until I

went thru menopause but Dr Cohen feels that the ever present tinnitus I have is

just another form of the migraines.

There is no doubt that caution needs to be taken with these seizure meds but for

migraines, it seems that they are the most effective. I know the normal

recommended drugs like Imitrex are very potent with our family. We don't even

want to go there.

Alice