not dx'd yet... but wandering what ya'll thought

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staringeyes

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I'm just coming to realize that I may have epilepsy. I have had three "fits" in the last 18 months. This is sorta gross you all. Sorry :( This is what I'm told that I do. I have very little to no memory of these events. My "snoring" wakes my husband up. I am ALWAYS laying on my back staring at/passed the ceiling. I can NOT be brought back(?) I throw-up, pee, and poo on my self. My family always calls EMS. I turn bluish/gray--skin. I have to have oxygen. I continue to remain staring, and messing myself up. I am totally unaware for several HOURS. I don't remember I.V.'s Folie cath's ect. I do lick my lips, swallow,pick at things that are on me. All with out looking at them. When I start coming around I can't hear very well like I'm in a well or something(hard to explain). I can't talk. It all comes out gibberish. I also have a killer headache every time. Mine also always start when I've been asleep.
 
Hi staringeyes, welcome to CWE!

Anytime you have issues with loss of consciousness, inability to speak or respond it's a good bet that something neurological is going on, and you should see a neurologist to get evaluated. The "snoring" your husband hears may be the labored breathing that occurs after a seizure. Turning blue is also common with a tonic-clonic seizure (all the blood is sent up to the brain leaving lips, hands etc. gray or blue), as is loss of continence. It is unusual to take so long to return to full consciousness, however -- perhaps that's related to either your fibromyalgia or lupus.

BTW, seizures are known to occur in 14-25% of patients with lupus (compared with approx. 1% in the general population), so your doctor should be aware of this possibility, as well as options for treatment.

Best,
Nakamova
 
Thanks Nakamova I didn't realize that I was more susceptible to seizures since I have Lupus. I will be talking to my Rhuemy about it. But she is 4 hrs away. I am due to see her in July. Until then I am going to talk to my GP. He is the one who sees me in the Hosp anyway. I'll see if he will refer me to a Neuro.
 
Don't be afraid to be persistent with your GP about getting a referral. Your nighttime events are no fun (to say the least!), and your doctors should be helping you find a way to treat them.
 
I am going to see him (GP) on the 18th of this month. I will talk to him then. Thanks Again Nakamova
 
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