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no independence

Tue, 07/06/2004 - 17:24
hi everybody, i am quite new here and just thought some of you may be able to help me a bit. the thing is i have epilepsy since i was a baby but it seems to have got worse i am taking tegretol but it dosent seem to be working and it just seems to be getting worse. i dont know what to do because i can no longer go to school because the school cant handle the fits all the time. i cant even go out with my friends. i just feel so isolated anyone feel the same way?THANKS

Comments

RE: no independence

Submitted by cledder on Tue, 2004-07-06 - 08:51
The first thing I would suggest is that you make an appointment with a nuerologist to find out why your seizures are so uncontrolled. Secondly I don't know what type of school you're going to that they can't accomadate your seizures because that doesn't make sense either.

RE: no independence

Submitted by michael46 on Tue, 2004-07-06 - 13:29
Hi Leanne, and welcome to the community. I hope you will take the time to become familiar with the site and its members as they can serve to alleviate some of the isolation which you speak of -a consequence of epilepsy I know only too well myself. This is a place that people can gain advice, exchange ideas and, perhaps most importantly, develop friendships. With this said I leave my name and e-mail address for you to make use of.Take care, and as said before: Welcome aboard!! Michael Haileymhailey@telus.net

RE: no independence

Submitted by mexican_fire on Tue, 2004-07-06 - 17:24
Hi LeAnne~~I can relate to you in several ways.My name is Nancy, and I have had epilepsy for almost 4 years, that I've known about.My epileptologist is thinking that I may have been having seizures as a young child that started around 4 or 5, maybe 6.I had Absense seizures and some Gelastic ones as well.Now that we live in Phoenix, AZ I was referred by my D.O. to a top notch neuro in this area, and he did the whole neuro work-up, and then scheduled me to have EEGs done. I had two, which both came back abnormal during the hyperventilation. He added Neurontin to my Tegretol XR, and slowly increased it to the max of 3600 mgs.Then he sent me to the epilepsy center at Barrow Neurologic Instistute, and I was then in the hands of a wonderful top-rated epileptologist, and after a few visits he added Topamax to my other 2 drugs, and after 6 months, I said enough, and asked them to decrease it, but they scheduled me for VEEG in the EMU. I went and had that done a few months later, and they completely removed me from all my meds, and 3 days later I had the first series of small seizures that went on all day long, then 2 days after that I had another seizure, and then one day after that one, I had my 3rd and final seizure for that stay.All 3 of my seizures were different, so they said I had a mixed-seizure pattern.My diagnoses was actually TLE in association with other seizure types.They types of seizures I have are Grand Mal, Myoclonic, Simple and Complex Partial (those are the ones that plague me the most).My meds were changed again when I left the EMU. They kept me on the same 3600 mgs of Neurontin, and then 2 weeks later added Depakote to it, and I don't have ANY side effects with either one, or between the two of them combined.However, I have seizures at a more frequent rate than they should be, but they aren't so bad that I can't live it.I was on the Tegretol XR 800 mgs for more than 2 years, and then came here, and was on it for another year and a half, and it started not working on me, and I was having more seizures that were more severe, and too frequent.Well, when I was in the EMU, they said that the Tegretol had been way too toxic for me, and was causing problems with my liver. I also gained a 40 pound weight gain, as well. I have since lost 24 pounds of it, and still losing, but slowly.Usually when Tegretol stops working, it is usually caused by a phenomenom called "auto-induction"--this process impeeds how well the drug is excreted from your body, (how much of it leaves, and how much stays)and everytime you take more, there is already alot of the last dose still in your bloodstream, and eventually it builds up enough that it can't keep up with its self and it starts to toxicate you, and can cause seizrues that worsen in severity, and frequency.It also causes you to build up a tolerance to the drug, so your body needs more, but your brain doesn't, and that is where alot of the unwanted side effects come from, as well as toxicity.Tegretol is a nasty drug, as is the family of hydantoins--(Dilantin, etc)It is only good for certain people. Alot of people really can't tolerate it that well.Just because a drug is good and is the first-line drug of choice for your seizure type(s) and another person, doesn't mean that it will work or be right for you.That is why docs usually try a multitude of drugs and combos to get the one(s) that will work the best for you, with the least side effects and the best seizrue control.As for feeling alone and isolated, I have that same problem, but mine isn't with my friends or society, it is with my family.My dad's whole side of the family, including him, have totally disowned me, because of this, and my mom's parents and brother, are just wicked about it. My uncle says that I am a liability problem in his house, and that I am NEVER welcome into his house as long as I have seizures, because he doesn't want to be inconvienced by me, or embarrassed by me having one in front of anyone. I might make him look bad, is what he said. We are gooing to go out of state to see my cousin get married, and we were supposed to stay at my uncle's house, but then when my mom called him back a week later to ask him something about the wedding, she also told him that I have epilepsy, and he said all the garbage that you read previously, and then told mom that she had to leave me home, and if she couldn't do that, they she had to stay home, as well. She called her sister, and we will be staying with her, instead.I can't go to the reception, because of the strobe lights, and disco light and all that jazz, because it is a potentially dangerous situation for me, and everyone else.My mom's dad thinks I need to be institutionalized for having epilepsy.I don't know WHERE they get all their weird deranged ideas about where I need to go and what I need to do.The only ones I have left are my mom and her two sisters, and my brother and his wife.My friends took a hike, and I only have about 3 left from college, and my other everyday friends walked when I was still in Ohio.I can't drive, because in Dec of 2002, I had a car accident and hit a tree head on, and was taken by ambulance to the ER, and I haven't been able to drive since that happened, so I rely on city transportation, and ride my bike to places close to home.I can't do anything, unless I am with someone (they waived the bike riding, since no one is home, and I need to go to the library sometimes), I can't play softball anymore, I can't ride a horse unles it is with a helmet on, I even have to wear a helmet when I take walks in case I take a fall with my Myoclonic seizures or Grand Mal. The list goes on.So, I can very much relate to you.GET THAT TEGRETOL CHECKED OUT, BEFORE YOU WIND UP WITH THE PROBLEM I HAD!!!Good luck,Nancy

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