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epilepsy most of my life,but now very confused!

Sun, 02/04/2007 - 15:03
i will start by giving a brief history. started having petit mal age 6,last seizure age 11,then when i was 18,i started having grand mal seizures,then stopped when i was 21 & then age 28 started having grand mal again,but only happened for just under a year. then at age of 29 i started to experience feelings & ask for referral to neurogolist,concerned it may have something to do with my history of epilepsy. i will try to explain my sypmtoms best i can & see if anyone can give me some sort of clues to these episodes as my useless neurologist has told me that it isn't epilepsy i've suffered from most of my life,it's panic attacks!!!! as time has gone on i have progressivly had various other symptoms appear. it starts with a sort of tingling sensation which feels like its in my brain on the right side of my head,sort of above my ear,then that tingling sensation starts in my stomach & feels like its rising & just as it reaches my throat i feel like i'm gonna be sick,then i get a really intense & overwhelming feeling of de ja vous,everything looks really weird & my head feels really funny & each time this happens i feel the need to hold on to something for dear life & one time when it happened to me,straight after all these feelings i felt like i was gonna wet myself. these episodes last about a minute or 2(as far as i know). some mornings when i get up i have kinda sudden twitches of my left hand & the amount of times i've lost my coffee cup or sugar pot etc out of my hand,is unreal. my brain function is generally getting worse as time goes on & couple of other things that have developed are that i am now non-verbal after my grand mals & i seem to have seizures straight after sex. my vision is major problem most of the time cos everything looks so weird & outrageous,i call it my trippy vision,cos when it happens its like i'm off my face on drugs! & sometimes my triipy vision can causes the episodes that i explained & these visual triggers are gradually increasing in variety,things like moving water,frosted glass,net curtains & the list goes on & is gradually growing. some mornings when i get up,i have a feeling which i call my seizure hangover cos often it comes after having a seizure the night before,i feel like my head is really kinda funny,i feel drunk,i'm all over the place & my head is shot to pieces. i think i have covered everytihng,but can't be 100% sure cos my memory has got really really bad,to the point that sometimes i cant remember the names of objects & have to try to describe what it is. i'm sorry if this post has gone on & on,but i just wanted to try & cover everything in order for you to try to help me with some answers. thank you in advance,any information will be greatly recieved & very appreciated. p.s i think this site is great,the best i have found so far.

Comments

Re: epilepsy most of my life,but now very confused!

Submitted by carrieb on Sun, 2007-02-04 - 15:26
Mckenzie, It definitely sounds like seizures to me, but, then again, I am not a doctor. Over the past 13 or so years, I have experienced many of the same symptoms you have described with simple and complex partials. I highly recommend you blow off your neuro and see an epileptologist instead. They are doctors who deal with E patients only. In fact, it wasn't until I saw an epileptologist that a brain lesion was found as the cause of the seizures. The neuro I'd been seeing for 10 years had never thought to give me an MRI. Once I moved on to an epileptologist, I was able to be treated correctly because she knew the source of the problem.

Re: Re: epilepsy most of my life,but now very confused!

Submitted by Brian Hen on Tue, 2007-02-06 - 04:40
Hi Mckenzie You interest me regarding Epileptologist who I have never had a visit to for an examation, I have seen at least 10 Neuruologist all different meds' I had an MRI.EEG.+ other Will see an epileptologist now Thank You Brian Henn e-mail bhenn@bigpond.com

Re: epilepsy most of my life,but now very confused!

Submitted by heathersmithers on Sun, 2007-02-04 - 19:10
Hi mckenzie just to let you know your not alone,,,,, grin.. we have a pool in our backyard,,,, watching the water does it for me,,, the leaves on the trees,,, night driving,,, no i dont drive...smile.. lately its been bad because of the snow... I seem okay with the quick flashing in an eeg...but the slow moving is what does me in... just to clarify,,, i have simple partial,, complex partial and cluster seziures... curently on 1200mg of carbamazipine and 300 of topamax.. hope this helps.. Heather

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