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Joined: 1/29/2006
Msg: 1
EpilepsyPage 1 of 1    
I have had Temporal Lobe epilepsy all my life. I have suffered from Febrile Seizures (in infancy), Tonic-Clonic (Convulsive) seizures, but mostly Complex-Partial and Simple-Partial Seizures (Non-Convulsive). I also have suffered a couple psychogenic (pseudo) seizures in my life - those are ones that look exactly like a tonic-clonic but are stress-related in origin - med's will not help them. ALL my tests (EEG's, MRI's, CT Scans, etc...) were normal. FYI - Pseudo seizures are caused by a stress in your subconcious that causes them. I have tried tons of anti-convulsants to no avail - Tegretol (carbamamzibine) , Dilantin (Phenytoin), Epival (Valproic Acid), Phenobarbital, Topomax (topiramate) and Frisium (Clobazam) - which I was on until they added Lamictal - and now they are going to cut the Topamax.

Brain surgery is not an option for me because all my tests are normal. We think it could be a hormonal thing - connected to my menstraul cycle (re: Catamenial seizures)

Has anyone else been through this or does anyone know someone who has epilepsy that is going through this? Do you know anything that they might of done that helped?

[moved from relationships. /Dog
Joined: 5/12/2006
Msg: 2
Posted: 5/17/2006 10:35:50 AM
I suffered form epiliepsy for a long time too.. Just 2 years ago ti stopped. I understand and will pray for you. Although from alot of fellow suffers I hear surgery helps.

Joined: 1/16/2006
Msg: 3
Posted: 5/17/2006 10:40:06 AM
I have the same temporal lobe sezuires you have but my tests always show the spikes for someone with sezuire disorders. Been an epileptic since I was 13. Began having them after a run in with the corner of a piano bench. I've had everything from petite to grandmall sezuires suffering cuts, brusies, two broken teeth, concussions, etc., that I am sure your well aquianted with? Nothing controlled my sezuires for over 27 years. I also was on Phenobarbitol and Dilatin both, then Dilantin only, then Tegratol and then something else I can't remember the name of and then back to Dilantin and finally Depacote. With this medicene I have been sezuire free for about 9 years now. I can even drive a vehicle. Not all meds work the same for everyone but I would talk to your neurologist and ask about Depacote and give it a try. Goodluck!
Joined: 3/13/2006
Msg: 4
Posted: 5/17/2006 10:43:32 AM
I have epilepsy too, however I'm relatively fortunate in that mine is Photosensitive epilepsy. Which means it is triggered by flashing lights.

It means no concerts where there is the possibility of strobe lighting, it means no cinema when I know there are going to be major special effects (mainly sci-fi) and no driving, because the sunlight sets me off.

But if I avoid the trigger I usually avoid the fits.
Joined: 1/20/2006
Msg: 5
Posted: 5/17/2006 11:04:04 AM

It helped me when I was having what you have in my teens. I was lucky that mine seemed to have only been adolescent.. started them at about 15 till 19ish.

But at the end I meditated everyday! even if it was only for 20 mins!
It helped me bring my stress levels down and become aware of my mental state.

Get used to knowing when you are stressed and the signs of it coming on. And pretty much tell the world of F-off that you have to take time for yourself. 20 mins can mean the difference!

I really do not know what else to say to help.

Hope it does help even just a little.

Joined: 4/17/2003
Msg: 6
Posted: 5/17/2006 11:53:34 AM
Sorry to hear about that! I've heard of people going on anti-depressants for seizures related to stress and hormonal imbalances. I know it's easier said than done, but the stress that a lot of people have causes increased frequency and severity in seizures. I don't know from personal experience though- good luck with your search!
Joined: 1/29/2006
Msg: 7
Posted: 5/18/2006 12:50:03 PM
Actually - I have spoken to my "Neuro" and I cannot take anti-depressants because I have been told that they can decrease your seizure threashold and I have enough problems controlling them as it is.
Joined: 4/6/2006
Msg: 8
Posted: 5/18/2006 10:57:57 PM
hi there
I dont know if i can help but i have had Epilepsy.I took myself off med's bout 8mths ago and documented the dates of my seizures. I noticed they happened every 60days i have tried a herb formula its called "HERBAL NERVE" it is for ppl who have problems sleeping its suppose to relax u. i take this and i havent had a seizure in almost 4 mths now. All those anticonvulsants r terrible for ur system if u take em for long time they can screw up ur organs expectally ur liver and kidneys!I am starting a Epilepsy chat meet so we have a support network maybe it would be helpful to u.if ur in edmonton the Epilepsy Association is a good place for info.Id start to document em they also could be allergic reactions to foods.check out "treating Epilepsy Naturally " by Patricia A. Murphy its got alot of info for treating em and the different reasons why ppl have epilepsy.also maybe helpful to check for vitamin definances alot of epilepsy is caused by this! well if ud like to chat my email on msn is bye for now
Joined: 4/6/2006
Msg: 9
Posted: 5/19/2006 11:09:10 PM
ty i started a new one in current events i assume thats the right one ty
Joined: 1/29/2006
Msg: 10
Posted: 8/6/2006 8:21:45 AM
I just thought I would put a note:

Because we thought my seizures were connected to my hormones and my menstraul cycle my neuro placed me on "Micronor" (a "Progesterone ONLY" birth control pill).

FYI - Progesterone is known to have an "anti-convulsant" effect and estrogen a "convulsant" effect.

However - After starting the progesterone (I took it for less than 1 week) MY SEIZURES INCREASED DRASTICALLY!! It has been one week that I am off this now and I still have frequent simple partials IN ADDITION to "hot flashes and headaches"!!

I DO NOT Recommend "Progesterone Therapy" for any women experiencing seizures around ovulation or their menstraul cycle! They tell me now I could be like this for 2 months or longer until my body re-regulates itself! DO NOT RECOMMEND THIS THERAPY!!

 Just 4 You
Joined: 1/25/2005
Msg: 11
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Posted: 6/28/2011 9:59:31 PM
I found that out the hard way, by being prescribed AntiDepressants by a Psychiatrist when I was having a rough time with rejection (women don't want a guy who can't drive). The drugs dropped my seizure threshold and I began seizing (Tonic Clonic) about got hospitalized. The Neurologist stopped the drugs I'd been put on, and the Psychaitrist refused to treat me for not following his orders!
Joined: 4/6/2009
Msg: 12
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Posted: 7/23/2012 1:04:57 PM
they put me on valium . i had the same thing but mine got worse then i went north to seattle and saw the best nerosugeons in the u.s for help and those meds your taking have bad side affects . i know i took all of them and was still dying from grandmal siesures .
Joined: 11/15/2011
Msg: 13
Posted: 7/23/2012 11:21:55 PM
I just talked to someone yesterday w/ epilepsy. He said he had hist last seizure after watching a movie on a big screen when he was 10. He had been living on phenobarbitol and the rx protocol. Good news is, he said when he was 25 he wanted confirmation he was indeed 'done', so got the pet or MRis necessary, and was told the whole in his brain had closed up and he was healed, for good! He also said he avoided stress and used calming herbs.
Joined: 11/5/2010
Msg: 14
Posted: 7/24/2012 5:13:10 AM
I 2nd the vote for Depacote (sp?)---it worked WONDERS for me! Best of luck<3
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