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Epilepsy...not for sure of course!
Fri, 03/24/2006 - 14:52Topic: New to Epilepsy.com
Hi everyone,
Just wanted to say howdy! Let my story out...as it seems to have been eating away for the last year now.
I am 26 and just in the process of diagnosing this as epilepsy or what. I am on a bunch of drugs. First it was Ativan..to calm me down when the 'strange episodes' happened. At that time it was mostly pain and sensory problems in my left side. My first neuro actually was thinking MS until my MRI came back normal. THen my familiy doc put me on Gabapentin(neurotin?), cause she was worried and wanted to try something while I waited 2 months to see a second neuro. Anyways, so then finally my second neurologist had a theory that my problem was anxiety/panic. He put me on clonezapam, low dose .5, and told me to start weening off the gabapentin, which i was up to 1800mgs/day. went down to 1200 and that was bad news. My hubby called the doc and the doc said...no more monkeys jumpin' on the bed!
Sorry, just all these drugs! ummm. ya meanwhile I am freakin' out. thinking i was crazy or making myself do this..how, why and lets fix this now were all thoughts runniing through my head..over and over.
So back on the drug story. Ativan about 3-4mgs/day, gabapentin 1800mgs/day, clonezepam 1.5mgs/day and now finally tegretol(carbamenzine?). I went back to my neuro and told him I was in pain(i think from night seizures) my husband said it looks like I am streching and I let out a moan and my back arches...he actually said that Emily Rose reminded him of me...thanx honey!
Now I am weening on the tegretol, the neuro said just because I had a normal eeg, dosen't rule out epilepsy. So I am now taking 400mg tegretol he is working me up to 600mgs/day and then see what happens.
I just am so stoned all the time. is this normal to be on tso many drugs? I am still having weird, like drop attacks. I feel dizzy and boom. legs give out and i am paralyzed onthe floor. but only for like 5-10mins and i am up and normal. Could this be a side effects of all my drugs or is this still some sort of other thiing I need to get treated?
One more question...is it common for seizures to progress in severity? Like I think i may have had little ones when I was little...feeling out of my body...i thought i was pychic or something...cool! Not really. Any way.
Sorry for the mega typing...I am just so confused, alone, scared and not knowing what is ahead for me is hard. Especially since my husband and I were planning to start a family in a year or so.
THanks for listening(reading;) and hope I can pull some strength from talking to y'all.
GongaAnn
Comments
Re: Epilepsy...not for sure of course!
Submitted by abrannon1227 on Sat, 2006-03-25 - 21:46
Hang in there! My name is Amanda and I am 27 years old and went through something very similar. It isn't uncommon for someone with epil. to have a normal EEG. If your seizures start in one part of the brain and then sometimes spread they may not show on the EEG. I have complex partial seizure disorder. My seizures start in a small area in the right temporal lobe. For several years I was told that my seizures/auras were panic attacks because these episodes didn't show on the EEG. Three neurologists later this Dr. was able to prove they were seizures. This Dr. suggested that I do the Epilepsy Monitoring Unit for a few days in the hospital. He took me off my meds and sleeped deprived me and sure enough I had an episode. While your in the monitoring unit you are monitored on camera and an EEG for 24 hours a day. Without me being on the meds this seizure progressed to a complex partial and it showed on the EEG. I eas so excited believe or not because now I know I am not crazy. I am now considering the surgery because these episodes really bother me especially sine I can no longer drive. Good Luck!
Re: Epilepsy...not for sure of course!
Submitted by gawilson on Sat, 2006-03-25 - 02:44
hey..i'm the mother of an 11 year old with seizures and a nurse. the emily rose attacks that your hubby says your having at night certainly sound like seizures. if the moan is more like a thrust of air with voice..it's probably your diaphram pushing the air from your lungs when you tighten up..this happens to some with seizures. the back arching is also common. if it's something that your husband can time ask him to do it so that you can tell your neuro doc. my daughter is 11 and yes her seizures have gotten worse threw the years but that doesn't mean everyone does. she's on 3 different epileptic meds and still has break through seizures. it's very difficult but it can be managed. if it is seizures that you are having, when they figure out the right meds and the right doses for you i'm sure you'll do just fine. i can tell you are spunky, just like my daughter. Make sure you have the RIGHT DOCTOR FOR YOU. girl, you have to interview your doctor like they are applying for the job of taking care of you and that is your right to do so. you write down questions and you ask them..not all doc's are that great at explaining so push for it. and always remember that doctors are people not gods and they do not know it all. take it upon yourself to investigate ie: meds, different types of seizues. you are also not alone..trust me. you have the support of your husband and all here. I would talk to my neuro doc and my gyno about pregnancy and seizures...and maybe consult a pediatric doc and ask questions as to effects of meds on baby during pregnancy.....just be as informed as possible....i send you all the best wishes and your not the only one long winded....lol