Thanks for the responses. I have always been overweight, but not massively obese by any means. About three years ago I began having odd symptoms. I had been diagnosed with FMS many years ago, but I started having strange sensations in my chest and stomach, snapping sensations in my head, dizziness, chest pain, insomnia and anxiety as a result.

I had a presyncopal episode. I went to the cardiologist and neurologist. I had a cardiac workup including heart cath. I have mild leaks in two heart valves and hyperlipidemia. I have a history of interstitial cystitis. I have extreme sensitivity to meds and a lot of med allergies with hives and macular papular rashes.

The neuro found slowing in the left temporal lobe, and rare transient spiking on the EEG. Video continuous EEG was done at Emory University that showed no epilepsy, but the slowing and the occasional spikes.
I started having palpitations and tachycardia, especially post prandially.
The neuro doc at Emory suggested I get tilt table testing. I went to a facility in Tenn that does these tests for dysautonomia. I was found to have a significant drop in BP from lying to sitting to standing with multiple PVCS.
I also had a positive QSART test that showed small fiber neuropathy. At that time, I didn't have a lot of neuropathic pain. I was on Trileptal for the ? of simple partial seizures before the Emory hospitalization, but had to go off the drug after a severe skin reaction. The drug did help with the electric sensations that I had developed some time after the initial symptoms.
Since my dermatologist told me not to take any more AEDs since they would also likely cause the same reaction, and since Emory said I didn't have evidence of Epilepsy, I didn't go on another similar drug.

I also had several sleep studies done which showed moderate sleep apnea. I couldn't tolerate the pressures of the CPAP machine and was far too agitated to try to deal with it considering the other symptoms. I couldn't eat or sleep and lost 38 lbs in three months without any attempt to do so.
I got fitted for a SUAD device for the sleep apnea. It is an oral appliance that forces the jaw forward and the airway open. It seemed to help, but then when the Doc adjusted it just a bit more forward, I acquired severe TMJD. Six months of continuous pain from that and a permanent bite change that resulted in bruxism.

In July I went to Vanderbilt University for a consult on the dysautonomia. My blood pressures had improved as I had stopped the bioidentical hormones prescribed to me some months before as I was having issues with the vasodilation that caused vulvodynia and heaviness in both legs.
After the Vandy visit I noticed increase pain in both legs, tingling sensations and would awaken with stomach pain. I continued to have relentless hyperarousals, but slept more hours once on lorazepam at night for increased total sleep time. My eating habits normalized and I regained half the lost weight.

The leg pains, cold sensations and numbness continued to worsen, I had skin biopsies at Emory which showed significant small fiber neuropathy. Emory is clueless on dealing with this except for using neurontin or lyrica. I tried neurontin, couldn't tolerate it and Lyrica is on the worst pills list and I have had friends who have had severe reactions to Lyrica.

I attempted again to go back to a sleep apnea machine. I researched thoroughly and found that Resmed made a VPAP auto. This machine is much easier to deal with as it has a breath by breath technology. I used it faithfully for many weeks. I felt worse during the day! I actually nearly fell asleep at the wheel numerous times, despite this never happening previously. It also tends to lower my BP even further. So now, no treatment for apnea, and the only meds I take is low dose lorazepam at bedtime and vitamins, minerals and such.

I went back to Vandy last week to see their neuro specialist, Dr. Peltier. She is great but had little time to spend with me. Since I have already had a blood test for celiac, she reccommended some other lab tests.
I am insulin resistant and evidently have been for years. The endocrinologist can only offer that perhaps I should go for a low carb diet, and get my weight down more, but we don't even know if the insulin resistance is an issue in my case. I recently read where quinolone antibiotics can cause nerve damage, and I have taken them in the past for chronic UTIs.
I know this is a long message, but any ideas?
Karen