So much of your story above strikes a familiar chord with mine! After a long chase for a motorneuron disease i was diagnosed with ME/CFS, all of the symptoms you listed above. I was even taken as one of the few to participate in the NIH 10 day “viral onset ME/CFS” study a few years ago. My search took a turn with finding a skull base CSF leak and then ES. When I am able to keep the leak sealed I have massive decrease in my symptoms (as you listed above) with the exception of the reflexive valsalva much like a Cushing Reflex (obviously not that specifically because I am still alive
I am just over 3 months out from my first styloidectomy and venoplasty…this alone reduced the valsalva reflex by 50% which I now see has been the link to my failed leak repairs related to post op IIH. I hope to have the other side removed in the next few months to completely address this reflexive response and hope for long term resolution for my leak. I share my story to point out some parallels in yours. ME/CFS is a diagnosis of exclusion… and there is a lot to exclude as you have learned and the rest of the ME/CFS population is coming around to as well. I will say however that it is a very real disease but think there is huge potential for structural dysfunction that in turn causes ME/CFS in a convoluted way.
As for your question about symptoms with turning your head. I did not notice this as a major player until after I had the styloidectomy (one training wheel has been removed which is leaving the remaining styloid side the leeway to increased compression of the vagus/IJV with head and neck flexion and rotation) Do you loose visual acuity with looking down? This has been noted in the literature and paper Jules mentioned about by the Barrow Neuro Inst. and is a big symptom of mine both before the styloidectomy and now. BTW nor have i ever had the typical throat pain many mention but do have dysphasia (delayed pharyngeal reflex) with common aspirations and the “lump in the throat” related to double crush of the vagus nerve (brain stem and peripherally from styloid at the foramen and C1 tubercle). This stumped everyone at the NIH and my ME/CFS doc, now it makes sense.
I am so sorry for your suffering and I understand. I hope you can find the right surgeon, one who is open to listening and learning and who has experience with this enough to address potential vascular and nerve compromise. It has changed my life for the better without question. Push on for your answer, I will wait with you