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tinathesingergirl

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Well, I am not exzactly new... I have been lurking for a while now. Ok here's my seizure history about a little over 3 years now i had my first Gran Mal at least it was to my knowledge little did I know I had 2 fever seizures as a baby, nothing (at least not noticible) until 3 years ago then a period of 2 years with no gran mals and now i have them about every 2-3 months. Had one last night in fact same as the others. Anyone else have any similar experiences. I am a little dissapointed with my neuro a perfectly lovely man and I am sure an excellent doctor but he does not seem proactive as I would like. I am supposed to see him in March again hopefully we will run some more tests. I have yet to have a multi-day EEG. So far I have had many CT scans, MRI's and they always come back clean so I guess that's good. But my last EEG last year said I had 14 abnormalities in a regular 1/2 hour one. Any thoughts? Oh I am currently on Keppra(generic)2500mg a day total. That's it. Dosage on that went up a few weeks ago from 2000 a day. Anyone have any issues after an increase?

Thanks,

Tina
 
Hi Tina, welcome to CWE!

It does seem like if you are having tonic-clonics (grand mals) every 2 or 3 months, then your treatment needs to be revised. But if you already have an epilepsy diagnosis, then having more tests won't necessarily change anything in terms of treatment. The usual routine is keep trying drugs/dosages until you find something that works in terms of seizure control/tolerable side effects. There are folks here at CWE who have found that making nutritional changes and/or trying neurofeedback has also helped with seizure control, so that might be an area to explore.

With AEDS, it's not unusual to have issues after a dosage change either up or down. It takes a while for the brain and body to adjust. Most side effects tend to increase as the dosage does. For some people, upping the med actually leads to increased seizures -- it can be very unpredictable. What sort of issues are you experiencing? It's a good idea to keep a seizure/symptom/side effect journal so you can track any changes and note if things are getting better or worse.

Best,
Nakamova
 
yes,

In fact I am keeping a seizure journal because i am trying to recognise any patterns to tell my doctors for better treatment. Since my neuro has never seen me have a seizure-just my husband, I don't think he recognizes the effect this is having on my life. I am thankful I am still able to work and I live within walking distance to my work so that is helpful but I feel so dependent on my husband now to take me anywhere.

Looking up the nutrition thing it seems promising I am going to find out if my insurance will cover a nutritionist to get me started. Looks like lots of people have had some success with G.A.R.D. I have been researching that. Would like very much to look into nuerofeedback but am unsure if my health insurance would cover that.

Thanks,

Tina
 
I'd love to try Neurofeedback too. Definitely not covered by my insurance, but I'm thinking of approaching a local practitioner to see if we can work out some sort of deal to keep the charges down.
 
Hi Tina - Hope U R well - appreciate all you say - I've just had 5 GMs followingeds change & feel like I've been hit with a shovel - often find myself wondering why I have to beucked about with so much & to what end
Col
 
Hi, Tina,

Welcome!

Nak is right - it can take awhile to get meds and dosages just right. I've been at it a year and we're still tweaking.

It's GREAT you are keeping a seizure journal. Those are very helpful. Mine helped me discover that my migraines are postictal, and that most of my seizures happen at night.

You are truly fortunate to live so close to work. Not just for the E - also for when there is snow on the ground and no one can drive!

:)
 
ColmanMac said:
Hi Tina - Hope U R well - appreciate all you say - I've just had 5 GMs followingeds change & feel like I've been hit with a shovel - often find myself wondering why I have to beucked about with so much & to what end
Col
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