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Medical Forum / Diseases and Disorders / Epilepsy / August 2003Can Tegretol cause additional seizures?
My 12 year old daughter Jenny was diagnosed with reflex epilepsy 17 months ago. She'd been having it as early as 2nd grade that she can remember but didn't know that the black-outs and memory loss were abnormal. When she was diagnosed we were able to control the epilepsy by keeping her off of swingsets, roller coasters or anything else with a lot of rapid motion. Unfortunately it didn't stay that way. In September of last year Jenny told me the seizures were coming often, even without swings or roller coasters. She was having trouble keeping up in class because she was blanking out so often (she's an honor student). We started her on Tegretol at that time, 200 mg/day. Everything went well until February when she decided that she was tired of being medicated (she also has numerous asthma meds) and decided to quit taking her medications. The result was a full convulsive seizure in the middle of the night and now I check on her meds at all times. All was quiet until June 28th when she told me in the car that she had just had a seizure. We decided to keep an eye on it. On July 10th Jenny had a full convulsive seizure in the middle of the night. The doctor increased her Tegretol. We had more seizures after that and more Tegretol has been added. She has gone from 200 mg of Tegretol to now taking 700 mg. She has gone from only having blackout seizures occaisionally to now having a variety of strange seizures almost every night (last night she had two). Some of the seizures are the classic seizure people associate with epilepsy, convulsing, foaming at the mouth, etc. Some are semi concious with jerking and yelping but she talks between the body spasms. Sometimes she remembers them afterward, other times she doesn't. Sometimes she has scary hallucinations. Sometimes she comes out of it crying but doesn't know why she's crying. The only thing that is constant is that they are always at night and she always complains of being extremely hot (her skin feels cold though. It seems to me that the Tegretol is worsening her epilepsy. The doctors all brush this off saying the epilepsy is worse because of puberty. Has anyone heard of anything like this? We're off for more EEG's and a trip to the pedi-neurologist next week... hopefully we can get something figured out. Thanks in advance for any help, advice or words of encouragement! Joyce Green Dear Joyce, God bless your daughter, and I see she was labled as I was. But in my case I label it what it is, Neuro-immune toxcity which is food and chemical allergies to everything which causes all my szs, and any med I took added fuel to the fire I never felt good on any of them growing up like others, I now have immune damage caused from taking them since 3 yrs of age til I was 30, I chose to take 100% control of my health and search for answers.. I read that your daughter has Asthma which can be caused by allergies and if so.... then its very possible she's having a negative toxic reaction to the med as I did and others have also. I researhced all the meds I was raised on wanting answers to why I am still so ill today and cant evr heal my immuen syysem 100% this is one of the past toxic meds and the info is from the PDR. This is just the Inactive ingrediants in tegretol The main ones are not shown for anyone to know by law Silicon dioxide, FDC red dye no.40, flavoring, gelatin, glycern, magnesium, stearate, sodium starch, Acid, citric acid, potassium sorbate, propylene glycol, sorbital, sutro ad xanathan gum. I was on much worse meds than this one, Hope this can your daughter! Kathy Hi Kathy- Thanks for the reply. Good call, she is very allergic and has been since birth. As a baby she was on a steroid lotion for skin allergies and she'd also get so allergic that her eyes would bubble (they still do occaisionally). Her current medications include, in addition to the Tegretol: Allegra, Singulair, Albuterol, Intol, Patenol & Flonase. How's that for a huge list for such a little girl? Perhaps taking her off of EVERYTHING would be a good start! Thanks! > Dear Joyce, > God bless your daughter, and I see she was labled as I was. But in my [quoted text clipped - 20 lines] > Hope this can your daughter! > Kathy > Hi Kathy- > Thanks for the reply. Good call, she is very allergic and has been [quoted text clipped - 6 lines] > > Thanks! My son is also very allergic. He wasn't diagnosed with epilepsy but he had 2 seizures. They did all the tests and came up with nothing. I did find out he has food allergies along with seasonal allergies. He had the seizures while on flonase and Zyrtec. I always wonder if it could be from the drugs or a reaction to something he's allergic to. I've read that some food allergies could maybe cause seizures. I don't know though. Kris Hi, That's why i'm switching back to dilantin.... i was on dilantin for a year and my grand mals were in check, but i kept still having a complex partial seizure a week, or twice a week. i was switched to tegretol to fix this, and then after a while my complex partials increased to 5/7 days a week. i said screw this, and now i'm back on dilantin. some meds work for some people. you gotta find the right drug. phil > My 12 year old daughter Jenny was diagnosed with reflex epilepsy 17 months > ago. She'd been having it as early as 2nd grade that she can remember but [quoted text clipped - 36 lines] > > Joyce Green Thanks Phil- I've already had to get really assertive in insisting that it IS the Tegretol and that I want her off of it. I then went around the normal pediatrician who always calls the neurologist and gets back to me and called the neuro directly to make an appointment to come in. Jenny has a combination of complex-partials and tonic-clonics. Strangely, I prefer the tonic-clonics because she doesn't remember them and she doesn't hallucinate during them. She's always afraid during the complex-partials. She forgets a good majority of those as well but the ones she remembers are nightmarish for her. Thanks for the reply :-) Joyce > Hi, > [quoted text clipped - 60 lines] > > > > Joyce Green hehe.. you know.. that's the irony... i'd prefer just the tonic clonics over the complex partials... because during the grand mals, i'm out... i don't know whats happening... but during the smaller ones, i'm half aware, in a state of absolute terror, and this horrible taste and smell in my mouth. so whats the lesser evil? phil > Thanks Phil- > I've already had to get really assertive in insisting that it IS the [quoted text clipped - 87 lines] > > > > > > Joyce Green No strange tastes for Jenny but she always complains of being horribly hot yet when I feel her skin it's actually quite cool to the touch. I suppose the partials are better medically, especially since Jenny's seizures have been lasting between 8 and 12 minutes on average. Still... I'd rather she not remember. -Joyce > hehe.. you know.. that's the irony... i'd prefer just the tonic clonics over > the complex partials... because during the grand mals, i'm out... i don't [quoted text clipped - 109 lines] > > > > > > > > Joyce Green Joyce, my wife was 12 when she was put on Tegretol and it did not work very well for her at all. I read your post to her and she started nodding as her experience was similar to your daughter's. My wife, Debbie, is 48 now and has been back on Tegretol for almost 10 years now and it works fine (for tonic-colonic seizures). I'm guessing that Tegretol does not work well for some people around the age of puberty. Debbie is susceptible to tonic-colonic, absence, simple-partial and complex-partial seizures. I've been under the impression for some time that finding the right combination of medications takes a bit of trial and error. I wish your daughter luck that her neurologist can quickly find the combination that works for her. Rob P.S. On Friday Debbie will be undergoing a left temporal lobotomy. This will remove the stronger of her two seizure centers (the other is on the right side and is much weaker). > My 12 year old daughter Jenny was diagnosed with reflex epilepsy 17 months > ago. She'd been having it as early as 2nd grade that she can remember but [quoted text clipped - 36 lines] > > Joyce Green
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