I'm a 38-yr old female. No history of high blood pressure; height is 5' 4", weight is about 165 lbs but was 140lbs before I became immobile.
For the last 6 months, every time I lie down, I gradually develop a headache and what feels like severe circulation problems: pressure in back of my neck, hands start to throb, pressure in my ears and around my head (mainly in back and on sides), feel flushed, my heart pounds harder, then finally pins and needles in my hands and feet. I can hear the blood "whooshing" in my head and ears, and can even feel it throbbing in my back. I also get burning pain all across my back as soon as I lie down, starting from my lower spine and progressing upward to the base of my skull. Fatigue is also bad.
In addition, I get these flashes of light in the corners of my vision, followed by a quick flicker of movement in my field of vision. Sometimes accompanied by a scratching noise (what some call "brain zaps"). This occurs regardless of whether I sit, stand or lie down, though.
I get these exact same symptoms when I sit for more than 15 or 20 minutes. The only thing that provides relief is standing, but then when I stand for too long it hurts my back (see med history notes below). Plus, I can't sleep standing up...
Here's my known medical history if it helps:
- I had spine surgery 6 mos ago - artificial disc replacement (L5-S1) - just before all this started occurring. I've had some setbacks from that surgery (facet joint syndrome & hardware subsidence), but my orthopedic surgeon says the other symptoms that seem circulatory and/or neurologic couldn't be related. He thinks it's my Lupus. (???)
- I have Lupus (SLE), but these are symptoms I've NEVER had in my 12 years of living with SLE. I also battle kidney failure w/ the SLE, but again, these are totally different than what I'm used to. And my Lupus doctors think these are related to my spine surgery (of course...)
- I have lived with migraines for more than 20 years. The headaches and light flashes are NOT my migraines.
- I occasionally have mild partial seizures, related to my SLE, which would occur maybe once every 3 or 4 months. Since these symptoms began 6 months ago, I now get seizures 2 or 3 times a week. These seem different than the usual ones - more like I'm going to faint, but I never do.
In doing my own research, every single description of "Vertebrobasilar circulatory disorders" or issues with the "Vertebral Artery" always makes me say "this HAS to be it - it's exactly what I'm experiencing". But I discussed this with my ortho surgeon, since this all came about only immediately after I had spine surgery, and he still says he doesn't think it could be related to my surgery. However, everything always seems to stem from my spine as it progresses into the circulatory-type issues, so go figure.
What complicates this is that I lost my job because I've been disabled over a year now (yes, I know, ADA protects me...but I'm not into litigation), so I no longer have any health insurance and have been turned down by all state and federal programs, including SS (apparently Lupus, spine surgery, and disabling pain don't qualify). I no longer have the [much appreciated] luxury of jumping from specialist to specialist and having test after test - I am 100% out of money. Normally I can manage my medical issues just fine, I'm used to it so I tackle it, get better and move on. This is the first time that I've been unable to cope and have no insurance. I am frightened. I do not sleep ever and can barely move any longer, let alone exercise. I don't know what else this could be, who I should go to see (since my doctors are all pointing at each other), and what I can do to try to get better. I need to work, so I HAVE to get better.
Any help or pointers to any research would be greatly appreciated.