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Fibromyalgia sleep anomaly aggravating Epilepsy

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I have had fibromyalgia for 20 years. Three years ago I was diagnosed with temporal lobe epilepsy, which started with frequent auras. The past 6 months the epilepsy has progressed to where I am having frequent myoclonus and absence seizures. I recently had an abnormal EEG with spiking theta waves in the temporal lobe, AFTER I had increased all my meds.

My neurologist said I need to calm down and get better sleep. I think my poor quality sleep related to the fibromyalgia, but my neurologist is not interested in my theories and he doesn't really believe in fibromyalgia. He cut my Trileptal dose in half and told me to just take a Xanax at bedtime instead. Why would he tell me to take less seizure medications and put me on an addictive benzodiazepam? That stuff is addictive! I don't want to take it! Has anyone else had this experience with their neurologist? I think I need a second opinion.
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replied July 6th, 2009
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I would get a second opinion. Fibromyalgia can be quite painful.

My fibro was horrific for 8 long years and finally in May 2008 I tried an anti-inflammatory diet to restart my digestive tract (as inflammation begins in the stomach and migrates throughout the body to the cellular level). Inflammation in the body ='s pain and another thing...cancer likes inflammation.

I stuck to the diet for 4 weeks as recommended and then began to re-introduce other foods one at a time to see how my body would react. Within the first couple of weeks my pain went from a 10 to 0...no kidding. Ice cream will bring it back to a 7.

Processed foods are the worst for patients who suffer from fibro as well as all cow's dairy.

You do not need nor want a doctor who does not believe what you are going through. Empower yourself, 2nd opinion froma physician who is on the same page as you and who will listen & treat you with respect. Remember you are in charge of your health, so fire the ones that can't or won't do their job.

Best wishes for a speedy recovery.

Zig
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replied July 6th, 2009
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Get a 2nd opinion..Also look for a Rheumatologist who knows about Fibro..Like you I have had Fibro for years (not seizures)and had to look for doctors that know what they are dealing with..

I also agree with zigemyster that diet definetly plays alot in to how we feel..

Hope you are able to getting a 2nd opinion soon..
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replied September 15th, 2012
Sleeping and Epilepsy
I may be late to this post, but as someone newly diag with Fibro-and having epilepsy for years, I can suggest trying melatonin for the sleep problems. I didn't want to try it at first. Sleeping pills don't mix with Epileptic meds but melatonin really does the trick. There is also valarin root. I find a combination of the two helpful and there is no morning grogginess. And on the neuro that just cut your dose in half - is he nuts? He apparently has no clue what that feels like much less the anxiety we go through wondering if the half dose will give the control we need. Sheesh-I hope you got a second opinion.
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replied September 15th, 2012
Sleeping and Epilepsy
I may be late to this post, but as someone newly diag with Fibro-and having epilepsy for years, I can suggest trying melatonin for the sleep problems. I didn't want to try it at first. Sleeping pills don't mix with Epileptic meds but melatonin really does the trick. There is also valarin root. I find a combination of the two helpful and there is no morning grogginess. And on the neuro that just cut your dose in half - is he nuts? He apparently has no clue what that feels like much less the anxiety we go through wondering if the half dose will give the control we need. Sheesh-I hope you got a second opinion.
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