just recently

[gr33nr0se]

about three weeks ago, i found out i have fibromyalgia, on top of everything. it turns out that my sleeping patterns were so screwed up from seizure meds in the past year that fibromyalgia was the result. its seriously painful and exhausting.

for all of you who sleep when the meds make you tired, try to avoid it as much as possible. i'm having issues with it right now but it might help in the long run.

 

[Endless]

Ordinarily, yes, you're right. They recommend all those "sleep hygiene" things, like no naps, going to bed and rising at the same time every day, etc.

I'm getting so little sleep at night that my sleep doctor actually told me to take a sleeping pill before a nap if I have to and nap throughout the day, just to get some more sleep in. Nobody could survive on the sleep I've been getting at night. It's also so I can get out of pain for awhile when it gets really bad (headaches). Sleep doesn't take them away but it's some relief to be knocked out for awhile.

I wouldn't do this without your doc's advice, though.

Yes, I agree. Anti-seizure meds really do a number on sleep cycles. Though that isn't why I don't sleep. The sleep doc had an explanation but I don't remember it.

 

[Nakamova]

Hey gr33nr0se, I'm sorry you're dealing with fibromyalgia too. I wonder if it's related to the underlying issues responsible for your epilepsy and/or lupus. In all three conditions, the nervous system becomes oversensitive to various stimuli. In lupus, it's the entire central nervous system that is prone to misfiring, in epilepsy it's nerves in the brain, and in fibromyalgia it's primarily the peripheral, pain-related nerves.

People with fibromyalgia are often sensitive to the same kinds of foods as people with seizure disorders, so if you aren't already, you may want to steer clear of MSG, aspartame, nitrates, sugar/simple carbs, caffeine, gluten, etc. With some autoimmune diseases, foods in the nightshade family (potatoes, peppers, tomatoes, eggplant) can be triggers too -- I don't know if that's the case for you.

I hope you are able to get the sleep issues worked out. If you have lupus you need lots of sleep (10 hours/day), so it's important to get on a schedule that allows for that.

 

[hootie]

I agree with nakamova...the same thing is probably responsible for everything going on with you. It may be helpful to try to track down food and chemical allergies and intolerances to avoid anything that causes you discomfort, lack of sleep, etc.

It also may be helpful to make sure you are getting all the nutrients you need. And look to find which nutrients are depleted by the aed(s) that you are taking. Depleted nutrients can cause pain, lack of sleep, etc.

Juicing fresh, raw, organic veggies can be very helpful!

Hoping you feel better quickly!