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Sleepless

Wed, 08/15/2007 - 01:27
Oi-vey. So i'm new to epilepsy, and epilepsy dot com. I diagnosed less than 10 months ago i think with partial complex something or other. Basically i zone out, there is some arm, and tongue movements and .. well, thats all i know. I had been having the auras for years, a rising sensation, my hands and face would kind of go numb. Doctor sent me for an ultra sound and a pregnancy test after it concluded i wasn't pregnant and they couldn't find an ulcer, still have these odd episodes, she sent me for an upper g.i.. I kept going back to her, i feel like it might be in my head, after receiving a catostrophic brain injury when i was 14 (10 years ago), my neurologist at the time had warned me lots that this could be an issue later in life. {I find it funny how i'm the only one who remembers these warnings yet also the one with the head injury.} ANYWAYS.. years passing still having the nausea i demand an mri.. she sends me for a Cat scan, which in turn gets sent to an mri which than i hear nothing back at all. Later i return to the doc saying that i'm having the same problem, My family doctor than sends me for a gastro scope thing. AGAIN still not in my stomach, than things start getting worse, i lost my car one day - i forgot to pull the emergency brake, car rolls back in the street, i run and get it, but forget if it actually had happened. At the gym one night i get the rising sensation, i try to breath through it, having these for almost 5 years, i had learned to cope and deal, next thing i remember some lady beside me asking me if i was okay, if i needed help walking somewhere, didn't realize how long i had been standing there, or did i know i do some weird tongue thing when it happens, i just told her i was just nauseous, felt a little funny, worked out and went home. Another time on the city bus home from college one day (second week into school) i stand up to get off the bus and i had peed myself. I don't remember doing that, i go back to the doctor, something isn't right, she doesn't think i'm having seizures still, says i'm disassociating. After some tests on my urine thinking maybe it was just a bladder infection come back clear i go back demanding to see a neurologist. Week or two later, i have epilepsy and my license will be suspended. Moral of the story, Docs aren't perfect and trust your instincts. I'm just frustrated - 4 different meds already and i don't know who i am anymore. Moody. Just looking around for some people in the same boat, on the same planet. Right now i'm in the investigation stage for the surgery. Was in hospital for 9 days in june for a continuous eeg, and going back in september for an invasive eeg for they can't tell if it's starting on the right frontal or temporal lobe. bwa.. SO.. i'm 24 yrs old, i'm female and from Ontario if anyone wants to bitch, or chat, please send me a message.

Comments

Re: Re: Sleepless

Submitted by quirky on Wed, 2007-08-15 - 08:40
Hello Utah I would like to just add here that people who have epilepsy and who are not suffering from grand mals, does not give you the right to tell people that they should not have brain surgery. People can still have surgery even when they are not having grand mals. It is the severity of the type of epilepsy one dividual is coping with that that person may end up going for surgery. As you should know, there are many types of epilepsys out there and to make a comment that one should not have brain surgery because one does not have grand mals I think is very narrow minded. I'm sorry but I really do! You remind me of some people I know who dont understand much about epilepsy and would say something like that. I myself for example suffer from complex partial seizures on a weekly basis. I had 4 yesterday and two so far today. I used to suffer from grand mals too until i was introduced to the med topamax which has been helping so far on that end. And I am a candidate for surgery and have some tests to do yet before I make up my mind on whether to go ahead with it or not.My own neuro considers me as a severe case of epilepsy even though I do not have grand mals anymore. I have plenty of CPS. My point is, whatever the type of epilepsy one has, you cannot judge that person and say whether it is major or minor! My own CPS are no fun believe you me, and if there is an opportunity for me to possibly get rid of my seizures, then I'd be glad to do it. Please do not say to anyone what they can or cannot do again based on what they have. You are not living their situation. You cannot judge. Thank you.

Re: Re: Re: Sleepless

Submitted by ouize on Wed, 2007-08-15 - 12:04
thank you quirky.. i have to agree, specially since they seem to be just developing, would like to nip them in the butt before i do start having grand mal seizures. Not only my doctor believes surgery could be benificial, but 3 other neurologists as well. Still doing the investigation myself, going into the epilepsy unit here in london in september for the subdurals.

Ouize, Reading you're from

Submitted by GodivaGirl on Wed, 2007-08-15 - 09:52
Ouize, Reading you're from Ontario. Gotta ask, where abouts? I'm about an hour away from Toronto. Reading your post in general, gotta tell you, for the most part it's probably the Ontario government's fault more than yours that things are taking so long to piece together. Wicked doctor shortages throughout this province. Just back in June I was freaked about something non-epilepsy related, tried to get in to my family doctor's office & was told Aug.26th for a regular appointment - no more than one issue & 10 minutes as it states on her wall!! Option b - October 10th - deal with the standard physical, longer appointment - about 25 minutes, maybe 2 issues. I took option b & just toughed out other stuff. Odds are your doctor is like mine - doesn't even have time to read charts or anything, just talks to you & says - oh, yeah, okay..hmm...let's do this & plays process of elimination! Personally, I hate my family doctor. See the woman once a year or year and 1/2 for that basic physical. For seizures, I check in with my neurologist out of Toronto (St.Mike's Queen E). I've been epileptic since age 5. When I was younger I dealt with McMaster Neurology - they were okay. I hear London has a decent neurology department as well. I've just been dealing with a great doctor out of St.Mike's Queen East for about 10 years now (I'm 33). Guess what I'm getting at is family doctors in Ontario are kinda annoying, huh & and I can sympathize with you there. Gotta hate mine & keep seeing the woman to keep my connection to a pretty decent neurologist that I have. As far as the meds - that takes time too. I've been on all kinds of meds & combinations of meds since age 16. I was diagnosed at age 5, they thought I outgrew this at age 12, back on meds at age 16. I've been on all kinds of combinations of meds. Adjusting to them is never fun. Try to stick with one for at least a few months, jumping from one to the next to the next too quickly can have a major impact. I learned that when I was in university, had a seizure an the u of Windsor medical clinic made me see a neuro that didn't take the time to understand what meds I was on & just added in more. then when i went home, doctors there didn't take the time to understand what Windsor had done, and they increased what i was on! yup, my local neuro that i used to have kinda sucked - enter the referral to Toronto. If you don't like the doctors, demand a referral to a better one. Just because it's OHIP paying, doesn't mean you can't get referrals to someone better. Try Toronto, London or Hamilton from what I know. Hang in there and Good Luck. ~ Erin / Godiva.

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