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having this sucks!

Sat, 08/18/2007 - 14:32
Hi, I am a 46 yr old male,and was diagnosed with tuberous sclerosis in 1986,which has the seizures as part of the condition.Back then,I was waking up in the bathroom floor,and having grand mals at work. I was taking(then)dilantin and tegretol. I had to let the dilantin go because of the gum swelling,and the tegretol was lowering my sodium level. I am now on Keppra,I just had it upped to 3500mg a day from 3000mg,because of the '1000 yard stare' type of seizures,which were accompanied by drooling,then I'd be in denial that it happened. I am also on Neurontin,3000mg/day.My neoro doc stopped me from driving until he saw how this new dosage was gonna work.I feel so outta control,its awful!You ask yourself,why do I have to have this mess?All you want to do is be normal,I held down a factory job for over twenty years,but my doc had me on a restricted 40 hr week,due to the extreme physical labor and heat.The meds have affected my temper to the point I will speak whats on my mind and can snap when I get frustrated. I realized I couldn't do the job anymore,as I had a much younger boss that blamed me for all his shortcomings,so I resigned.Currently I am trying to get disability.But what really sucks is you feel like a prisoner and can't have the freedom to come/go as you please. I know its selfish,and for my own and everyone else's safety,but having to depend on others to take you here/there sucks!You just want to be normal.I have also noticed a weight gain,perhaps this is from the meds.I know my family is looking out for my best interests,but it makes you feel like you are under a microscope all the time.Don't you all agree?Thanks for letting me vent.

Comments

Re: having this sucks!

Submitted by Seruzies on Sat, 2007-08-18 - 16:04
I hear you, feeling like a prisoner is the worst part for me, I was used to coming and going as I pleased, now, I'm a prisoner in my own home.

Re: Re: having this sucks!

Submitted by Bret on Sun, 2007-08-19 - 19:46
yeah,tell me abaout it! It seems the walls are closing in.The only way I keep my sanity is by writing/recording music in my studio.If it weren't for that,I would go stark raving MAD! Mom came by today,and when I saw my neuro,she told him of the absence staring spells(she just HAD to go in with me,ugh)He asked was I stilldriving,I said only locally,as I have no phone and thats the only way I can see my close friends,he said i wasn;t supposed to be driving. When she came by today,I asked how long was I supposed to wait,she said ,she didnt know. I told her I might as well sell it,its depressing!

Re: Re: Re: having this sucks!

Submitted by ouize on Mon, 2007-08-20 - 08:39
hang in there. I know it sucks. Also my licence was taken away in december, seeing my car in the parking lot drives me crazy, if i could just nip out for a minute no one would notice, but, what if something where to happen, seizures i don't realize i'm having, what if i lost control and killed someone. . just hang in there. It's going to get better, i promise. Theres only one way out, and thats up. Keep recording your music, you'll get through this.

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