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Lauren...
anti-epileptics causing seizures?
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I'll try to make this brief- I was mis-diagnosed with juvenile myoclonic epilepsy about 8 months ago. I am 22 years old and started displaying seizure symptoms when I was about 18. However I obviously did not know that this was the case or else I would have been diagnosed much earlier, I had my first Grand mal at 22.
at 18 i started to experience myoclonic muscle jerks, only it was definetly not "text book" they did not occur early in the morning, ever...not once did I ever have a myoclonic jerk in the morning. They happened when I was extrememly tired, extremely stressed, or extremely hung over. When I was young I could ignore it, especially because they were easy to ignore, they were small and barely noticable, and they barely ever happened. but as i got older, they became more frequent more likely because I was experiencing more stress in my life - i had a full time job, I was a full time student, in a full time relationship,was a full time partier - all of a sudden these jerks were super prevelant and before i knew it, it was to late to do anything about it.
Anyway back to the question at hand...i saw my first neuro in february. she put me on lamictal. I immedietly did not like it for a number of reasons. 1) it made me very very very very very very very very very angry. 2) it made me very very very very very very very very itchy. 3) and I was having seizures before and during sleep, something i had never done before. When neuro number 1 told me I was crazy for thinking that the lamictal was responisble for ANY of those side effects i didn't return to her practice.
when I switched doctors i also switched medications, to topamax i am currently on 300mg of topamax and still experiencing night seizures, every night, since being on anti-epilepstic drugs....i just can't see it beeing a coincidence
I want to know if anyone is in a similar situation as me i feel like i have had more seizures now ON these anti-epileptics than i did when i wasn't...your thoughts?
Recent Comments on this Discussion
good morning lauren and welcome to our web site.................mine started at 16 with those jerks and then just falling down losing all muscle control...............yea i was mad i couldn't stay out and party with my friends........i tried lauren ....i really did ....but it just made the sz worse.........the lack of sleep and the drinking were making it worse.......skipping meds so i could drink with friends was just stupid......i got tired of waking up in the hospital with an iv in my arm......dilantin burns like an sob when it goes thru an iv into your veins...........4 things i found that help lauren.............get enough sleep.................get enough to eat..................get the proper meds from your neuro.......................AND NO STRESS LAUREN......................i have lived by those 4 things and i been sz free for 15 yrs now............i still had some alcohol....god that beer tasted good.........but they recently upped my meds so i been alcohol free for over 15 months now.............i miss the occasional beer lauren,,,,but i dont miss the sz .................take care and god bless lauren.............scratch
Tell your Neurologist about the symptoms you are having right now. I am definitely not an expert but have been in the rat race of wondering what is going on here and who is going to take of me the best. I have taken practically all the medications and am on a test medication. It is really important that you either use the calendar that they have made via this computer or make your own discribing your seizures, the frequency you have them and how they effect you. If you have a description of them that is great or someone that come with you that can come with you that can describe them. I had 3 just Tues., while I was at the office, no need for a desciption, I wanted to leave, they kept giving me more tests and more medication. Night seizures are under control for me. I reacted to Topamax. Every patient is different w/ each medication. I take a large dosage of medications while other patients take small dosages and that is all they need. I thought at first they were psychological and then I found out it was Neurological. As they say "What a web they Weave!" I have had 2 brains surgeries for the control of seizures and a Vagal Nerve Stimulator and surgery for the battery replacement already! I have gone to a lot Neurologists more than 10 . Two Epileptologist, I see one at John Hopkins now, very patient, I hope you find your answer. I have learned to be patient, breath slower and walk daily. Good luck!
Two Epileptologist, I see one at John Hopkins now, very patient
I also go to Johns Hopkins. They have a top notch team. It's an interesting question. I was listening to a commercial the other day that was talking about a medicine I was on early on in my diagnoses and it said at the end of the spot that it could make your muscles spasm indefinetley. I am concerned about this because I have these shaking events that I'm not even sure are seizures and they really put you through a lot.
Ken Ritter
Diagnosed PNES December 2006 Epilepsy with PNES since May of 2008