Nighttime Neurological symptoms of unknown origin
I am 31, F. Almost 2 years postpartum. Last July, I began having sleep disturbances which have led me down a path of diagnostics for over a year. I have been to the hospital 3x in the last year. Last July, I woke within 30 minutes of falling asleep with a racing heart, dizziness, pulsating/vibration in my abdomen, full body shaking and feeling that I'm going to die, not just impending doom. The first time it happened, I immediately ran to the shower and jumped into it freezing cold. It increased from there, 1-2 times weekly. When Christmas rolled around, I was eating all the things and it kicked off. From there, I decided to go GF (not completely, about 95%). My issues improved, it would happen maybe once a month (maybe when i accidentally ate gluten but never paid attention). Fast forward to this summer, I end up with gastritis, esophagitis, etc. I go to GI and they want me to gluten challenge for my upcoming endoscopy (I am being check for inflammatory bowel disease and the CT w/contrast was to r/o pancreatitis/appendicitis and not related to my sleep issues). 2-3 days into the challenge, they began again. It is now nightly. I am terrified to go to sleep. I decided to see an integrative medicine doc who thinks the gluten may be triggering a parasympathetic response by inflaming the vagus nerve. I feel like an absolute nut job. Nobody but her has taken me seriously. I have been to cardiology - my heart monitor showed SVT and possibly A-tach during these episodes. I was cleared and given PRN propranolol which i will take if I can't get my HR down during an episode. I had a sleep study, showed mild sleep apnea (8 events of hypopnea per hour i believe it was). I have had every lab under the sun, all normal except elevated fecal calprotectin (288). I have had a CT w/contrast, abdominal ultrasound for the pulsating - nothing. Where do I go from here or what kind of specialist? Its ruining my life. Outside of this, I do have autoimmune symptoms, hair loss, fatigue, severe joint pain, brain fog (have been experiencing these symptoms since 2022). All labs, including thyroid appear normal. Any insight is helpful, I'm at a loss. The symptoms are same as above, racing heart, shaking, dizziness and sometimes black spots and feeling like I could pass out - always within 30 minutes of falling asleep. If I go to sleep and wake up at say 1am and go back to sleep, it doesn't happen. Just the initial. I should add that when I am falling asleep, I do have visual hallucinations sometimes but I am aware that I am awake.
Health history -
GI problems (bloating, intermittent diarrhea) had endo in 2013, PCOS (on spironolactone and metformin since 2018) - not your traditional PCOS, normal periods and got pregnant easily. High DHEA sulfate (still in the 500's despite medication).
Current meds since symptoms - histamine support, Boswellia for GI, liquid GABA/l-theanine and a natural sleep aid (neither of which are helping). The only thing that knocks me out enough to not experience and episode is wine, which obviously i'm not going to drink wine every day but it's tempting.
*another side note, I have breast implants (2020). That's the last piece I'm exploring but did consult a surgeon and got a price for a complete capsulectomy. My integrative medicine doc doesn't think it's my implants and thinks its dietary because some of my symptoms began in 2017. Not the sleep part though and that is my main concern.