Hey Marji: Sorry to hear you are going through it too. Sounds like everyone got a hard hit this year. I just went through what you described. Thankfully, I am out of it now. My "flares" seem to be like that alot. You are right it is so scary to drive with it. I actually fall asleep talking to people. Still having some trouble now with the sleeping thing, etc. but at least the bone pain and flu symptoms are gone now. It is so scary, like you will fall asleep and never wake up. The "alternate reality" thing gets to me too. I don't know how "normal" it is for everyone else (didn't read the responses yet), but it is normal for me. I really worry about it because it happened real bad just before I got the dementia and just got worse and worse until I didn't know anything around me. I still live in fear of that time. It is like all the oxygen is sucked out of your brain. Very weird feeling. Also, get problems with breathing especially at night. Needless-to-say, I don't get much sleep because the non-breathing thing wakes me up constantly. (that and the muscle spasms).
If not already done, keep us posted on how you are doing. I like where you said you think of us to keep you awake. That was sweet. I think of everyone here all the time. Keeps me going and I know I have somewheres to go if I need support (and they don't think I have 3 heads when I tell them what is going on). Small miracles, I tell you. I was just telling my sister-in-law how much of a struggle it is to stay awake driving. Once I hit that brick wall (SMACK!), that is it, I am done for. Those dreaded stop lights are the worst. So embarrasing, having people honk at you to wake up. I try my best NOT to drive, but it all comes on so suddenly, I don't even think not to drive. We went to Walmart yesterday because I finally felt real good, came out of there, and SMACK, couldn't drive home and went right to bed. Slept 3 hours until dinner - if you want to call it dinner - thank you Chef Boyardee in a can (a meal in a minute).
Doctor said I can go back on the Provigil to keep me awake. I get it hopefully on Thursday. You may seek if the doctor can give it to you. I am not sure if it is from hypoxia or not. I have all the symptoms but it hasn't been diagnosed. I just know they won't put me under anastheia because of these symptoms and the clotting, afraid I might not come back. I hope catherization doesn't count. They want to do a bladder catherization instead of a kidney biopsy. I hope it is less evasive. Anyway, are there tests for hypoxia? You may want to ask the doctor. I will, when my dance card isn't so full. Something new to torture the doc with every day. Keeps them on their toes :)
Well enough of this, I'm starting to foam at the mouth. I really hope you feel better. Enough is enough, right?! They need to put a cap on how much crap someone can take. Say 3 problems at a time sound fair. Nothing fair about this stuff. You know I wish you the best - HUGS!! - Kristin
Dx: Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.