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Anyone else have a seizure type disorder??

post #1 of 18
Thread Starter 
I have dealt with myoclonus jerks for many years.... Thankfully in the age of the internet I found out what type( nautrally it is the ickiest version).... I had been on meds when I was younger they worked but I was sleepy all the time... The last 12 years I have controlled them thru diet but lately they are getting worse ... Any ideas or help for manging them>>?? I dont have health insurence and none of the neurologist s in my area will see me without a referral which means talking witha gp who has no idea what I have ...
post #2 of 18
My sister is epileptic but I don't remember what she takes to prevent seizures. I can find out if you would like.

Other than that I don't have any advice for you but Good luck!!
post #3 of 18
I have epilesy and I take both Tegretol and Topomax to control my seizures.
I don't know if they'd work for your condition though. Hope I've helped you somewhat.
post #4 of 18
I don't have epilepsy or a seizure disorder but I use the same meds to control my bipolar disorder (though at a much higher dose than an epileptic would receive). In Canada it's called Epival -- in the US it's called Depakote. For some reason unbeknownst to me, the drug works on the region in the brain that controls both disorders, although the doses are significantly different.

Perhaps you could ask your doctor about meds again. There may be a wider variety available to you now than when you used meds previously. Personally, I wouldn't suggest Epival/Depakote as it's a weight gainer, and I have gained a substantial amount of weight due to Epival use. Perhaps Tegretol (also used as a mood stabilizer) may be an option for you.
post #5 of 18
Thread Starter 
Thank you I will try talking to a dr about this again..
post #6 of 18
I use to have seizures (childhood), but I can't remember the medicine...whatever it was blocked out a lot of memory of my childhood.
Not as extreme, but I will get muscle twitches, usually in my thigh area. from what I have read on that, it's due to lack of potassium in my body. Potassium is a natural calmer, although don't take too much of it for your kidney's sake! Try eating 2-4 bananas a week...they're a great source of potassium.
post #7 of 18
I started having seizures when I was 13 --- they are related to my hormones. When the estrogen jumps, I have seizures. Every month... I used to have the grand-mal kind (where you lose consciousness & are out of it for days), and the petit-mal kind (space-out & puke seizures) would basically lead up to the biggun's.

I haven't had a grand mal seizure in 5 years, thankfully --- I am on medication, called Klonopin. I was put on Klonopin 4 years ago after I banged my head against the windshield and started having 'issues'.

The Klonopin helps with my sleep disorder and keeps seizures at bay. It's really good medication, altho, it's a narcotic, addictive & causes liver damage. But I'd rather be addicted to .25 mg's per night then have seizures or have night terrors.

I do have issues every now and then (around the time the estrogen gets whacked in my body), I wake up and I'm all clenched --- my teeth are clenched tight & I can't move. I usually am pretty confused and don't know if I've just had a seizure or what. It happens once a month or so, but I just live with it.

I used to take Tegretol XR (extended release) but was removed from it about 6 months after my last grand-mal seizure. My big seizures are really scary, I sleep for days afterward & forget 'everything'. Stop breathing, etc. The Tegretol is a whole lot stronger than the Klonopin, which is why they took me off the Tegretol & when I started having issues again with night terrors & the clenching thing, they put me on Klonopin.

Why don't you have health insurance? Doesn't your work offer it??? I highly recommend getting insurance --- a Neurologist is the only person who can really help with a nerve or brain disorder. I see my brain doc once a year now, just to check the progress of how things are going up there. And with health insurance, I pay $6.00 for a bottle of meds that last me 3 months.

Anyway seizures are so scary, anyone who has never had one does not know the fear associated with it. And the meds, well getting used to them means you have to become a space cadet & feel tired all the time.
post #8 of 18
Even if you can't get full insurance, there are also medical discount programs out there as well, usually for under $20 a month. You might check into that.
post #9 of 18
Originally Posted by jugen
I have epilesy and I take both Tegretol and Topomax to control my seizures.
I don't know if they'd work for your condition though. Hope I've helped you somewhat.

Those are the 2 my sister takes. She used to have seizures when she was very young and hadn't had them in 26 years and all of sudden one day, had one at work (she is a 6th grade teacher). When she came to, one of the kids said that she had had one. Scary it could come back after all that time. She hasn't had one in over a year or 2 now
post #10 of 18
My husband has the Jerks too! Hes only had about 4 seziers (that he knows of). One I actually was there for, begining to end. Scary stuff.

I know the jerks you're talking about. His got really bad for a bit, untill he was put on Depakote. Then he ran out and they started to come back. They got very major Right before he had the sezier.

On top of the meds, he is suppose to get 8 hours of unbroken sleep as often as possible every night, eat 3 meals a day, and no binge drinking (getting a lil more than tipsy every once in a great while seems to be ok though). Strobe lights (and the like) are also a big no-no.

I dont "know" what you're going through, but in a way I do. Im very close to my sweet hubby so I know what you have to deal with. I hope Hope HOPE you can find something out there to make you feel better.
post #11 of 18
Thread Starter 
Sounds like I need to get to the dr...

None of my part time jobs offer health benifits ...

I dont think I have had any true sezuires the jerks hurt enough...
post #12 of 18
I have had stress related eplispy for 14-15 years.
I used to take epilim crono1000mg for it, but now its calmed down a bit I take lamotrogen 200mg.
post #13 of 18
Sorry you're having to deal with this right now, Jennifer, in addition to all the other stress you've been experiencing.
post #14 of 18
Thread Starter 
I went to the health food store and talked with a lady friend that has studied most of the natural medicine disaplines and told her about the myoclonus...

well after consulting two books she suggested lithium( yes it is that and a low dose ) ... Great news 5-10mg a day is helping me sleep better and the jerks are down to a few a day ... they were up to about 100 per day... I still need to find a doctor but this is working for now... My personality is a lot better and my moods are better ..
post #15 of 18
great to hear!
post #16 of 18
Thread Starter 
A few days on this stuff and I am feeling great ( could be the actual sleep ) ... wishing I had found this about 10 years ago
post #17 of 18
Glad to hear the lithium is working, Jennifer. Unfortunately, neither that nor any other anticonvulsant/mood stabilizer will help me sleep, no matter the dose.
post #18 of 18
Thread Starter 
Originally Posted by vespacat
Glad to hear the lithium is working, Jennifer. Unfortunately, neither that nor any other anticonvulsant/mood stabilizer will help me sleep, no matter the dose.
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