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gymrat827

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Hello all,

31, male, had epilepsy for 6.5yrs.

tonic cloic at 1st, now partial complex, even 2ndary parrtial complex now with VNS & meds & if im sleeping well.

take 7 or soon 8 meds. 4.5 for Epilepsy. Vimpat, Keppra, tegertrol, toppmax, Klonapin.

Also for sleep & bi-polar. Lunesta & serquel. Soon Lexapro & most likely lamictal because keppra is causing too much rage, aggression, etc.

I also have a VNS implant too. Ive had that for almost a year. Because of the toppmax ive lost enough weight where you can see the wire run from my upper chest to my neck.

interesting if you dont know its there and what im showing you.

i or doc's have no explantion of why i have seizures, my mom had them at 25, I started to have them at 25 too.

However mine are much much worse. I wake up in the ICU strapped down to the bed so i do not go on offense or try to just leave the place.

Ive gotten into it with the police & paramedics. When i go into that state, i just want to be able to do what i want do & when im not able or forced to lay down......I wont. Ill fight & resist.


Anyone else like me..??
 
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Hi Gymrat, and welcome.

My seizures were a bite similar to the fact like, one night I was watching TV, and the next thing I know is, seeing paramedics hovering over me and telling me to relax. My wife crying....you know the deal. I was told I was fighting with the paramedics a little bit. I don't remember any of that. Happy to say I haven't had any activity in a long time. Hope you feel better.
 
its gotten better in that regard. I am much more stable, the seizures come and go in about 5min or so.

So the last few ive just been at home, on the couch. But the years before were bad, ive been charged for a hospital bed because i broke the side rail off of it. Im glad the VNS has helped, but now my voice goes out after speaking for 50-70 seconds.

like your very, very sick. So thats what i tell people when im at work and it happens.
 
I hear ya. People think we have "The Crazy Disease". I was only violent when I had grand mals, (only had 2 in a few month period). Don't let people bother you about it. I don't anymore.
 
gymrat827 said:
ive had 13.
Click to expand...

Wow, sorry about that. Grand mals are the worst! I only had 2 at the beginning of my seizure journey in life. Hang on to this site. You'll get answers and plenty of info. Plus you're with people that have been where you've been.
 
That's an awful lot of seizure meds--just wondering if you have had multiple opinions? I'm sure others on here would know more; but I have rarely heard of someone, even with frequent seizures, being on so many meds, vs trying different combinations and doses of a couple of meds to find the right combination. Seems like there is such a thing as overmedicating. I do know the chances of SUDEP goes up the more meds we are on.
 
Hi gymrat,

My Dr. never was able to figure out what was causing my sz. until I had brain surgery and they found damage deep in the brain that not a single test would show. Lack of sleep is one thing that triggers sz. for me along with being on to many meds. I know when I was on Topamax and Keppra my sz. were out of control and they increased like crazy. Yu may want to try taking vitamin B12 1000 mcg. once a day which helps calm the nerves along with having a DNA test done. The test will show what sz. meds will work the best for you with the least side effects. I had the test done and they found I was drug resistant to all sz. meds out on the market now, so my Dr. wants to try me on the medical marijuana this summer. I wish you the best of luck and May God Bless You!

Sue
 
i do take inj. B12. 500mcg every other day.

1000mcg ED turns your face red from the niacian (spell), 500 EOD is all you/I need for a kick in energy.

All i know is if i get sleep deprived, ill have a seizure for sure. I just bought B6 to try, im waiting to get it still.......ive read some much about the quaility of supplments/vitamin's and some companies B6 is better than others, etc.

So i bought some pharma grade b6 and will try that for a month, see how it does with keppra and anger.


GL too sue, hope things can as well as they can.
 
lindsayschu2 said:
That's an awful lot of seizure meds--just wondering if you have had multiple opinions? I'm sure others on here would know more; but I have rarely heard of someone, even with frequent seizures, being on so many meds, vs trying different combinations and doses of a couple of meds to find the right combination. Seems like there is such a thing as overmedicating. I do know the chances of SUDEP goes up the more meds we are on.
Click to expand...

ive seen 5 Docs/Nero's.

If your in the Chicago land area, Rush is where i goto now. Its 1 of the 2 biggest places in Chicago to goto. Ive been to every hosptial in the whole area. Ive also tried about 4/5 other drugs. The sides i have now are terrible, but the others were worse.
 
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