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Conditions and Diseases > Epilepsy Forum > 25yo Epileptic Male After Phenytoin...
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Q: 25yo Epileptic Male After Phenytoin...
asked by: bhoover on May 16th, 2006
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Hey there forum, had a quick question: did anyone's grand mal seizures ever disappear and turn into petit mal seizures, triggered by driving or caffeine?

My grand mal seizures started when I was age 9-12, in the twilight stage of falling to sleep or waking up. I was placed on tegretol for some years, but when I tried weaning myself off that medication, they returned at age 18 on two to three seperate occaisions. I noticed I had dislocated my right shoulder one morning, only remembering the seizure and not how I injured myself. After that incident, my spilepsy disappeared for many years. My neurologist put me on 300mg of phenytoin. After hearing about the damaging liver effects of the medication, however, I weaned myself off of it over the course of a year and stopped entirely 8 months ago. I did not notice any symptoms until a couple months ago, experienced only when i'm driving...Nevertheless while I am awake now. My symptoms are rapid heart beat, tingling in my hands and feet, a head rush. I have counted 4 times now that I had to pull off the road and exit my vehicle, get some fresh air, cuz I thought I was going to have a heart attack.

So I guess that leads into my second question==could I be experiencing a panic attack instead of petit mal seizures (foreign to me)? I have been doing a lot of moving around the country and have been stressed lately after college.


Any reactions/advice/experience(s) are appreciated :ugh:
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shelbe
replied on June 6th, 2006
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Hey
My condition is a bit different to yours.I'v had epilepsy now for neally 7 years.I'v been on phenytoin for all that time.The same as you,300mg which I take at night.When I first started suffering fits I was seen by (supposedly)the best consultant in the uk.He put me on 1600mg of epillim,200mg of lamictal and 300mg of phenytoin.Obviously I trusted him and didn't question his judjement.But after 5 years I was still taking the same medication and my fits were no better either.My consultant wasn't interested in changing my medication so I went private and found someone else.This doctor was disgusted at how much medication I was on and said he wanted to change it asap,but most of all he wants me off the phenytoin.I'v came off the epillim and replaced it with keppra,which my doc is hoping will also replace my phenytoin.I tried to reduce my phenytoin about 6 months ago,taking off 100mg.It was horrible.I was scared all the time,depressed,i was suffering 2 fits a night,for a week,untill I decided to start taking mt phenytoin again.My doc thinks that taking off 100mg straight away was to much for my body to handle.Apparantly this is also one of the reasons they don't like to pescribe it now.I'm about to try again soon,reducing my phenytoin by 50mg at a time.Hopefully this will make a difference.
It won't alter the fact though,that since trying to reduce my tablets by 100mg,i have suffered panic attacks.I can't go any further than the local shop or taking my kids to school.If I go anywhere else,i have to have someone with me.I can't go in a lift anymore,i can't be in a space surrounded by strangers.It really has affected me,but im feeling better lately since learning what to do,deep breathing..Etc..!
Sorry i'v gone on,when talking about my epilepsy I do tend to go on forever.Lol.
I hope you feel well soon.In the mean time,be carefull when your on the road.And always carry a brown paper bag.Sounds daft I know but it does actually work when you start to panic. :wink:
stay safe,shell xx
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