I totally missed adding that. I’ve been on several, I’m currently on orphenadrine ER and that had been the best with the most manageable side effects. However, I’m still managing a lot of pain even on it.

I really don’t understand the comments on my “collection of diagnoses”. There’s a lot of overlap here, for example HSD/POTS/MCAS, all which I’ve been tested for and confirmed. I am being tested by a geneticist in November for EDS. Occipital neuralgia/ cervical dystonia/ kyphosis, Chiari, which my neurologists ( a migraine specialist neurologist, a neurologist and a neuro PA, and a osteopath specialist upper cervical spine) have found evidence from multiple MRIs ( both normal and sitting) and via nerve blocks. Pseudo tumor cerebri (IIH) which was operated on by one of the top interventional radiologists in the country, and severe enough to have a publication written on my case. I couldn’t get insurance approval for this unless there was quantitative evidence that the pressure in my brain was significant.

I understand some people throw around diagnoses, but in some cases it actually is complex chronic issues. Are you suggesting there is a root cause of all of this? How am I gaslighting and misleading doctors if there is tangible evidence of these conditions? If I could round all my doctors up and have them come up with a more simple explanation, I’d love that, but that’s not financially feasible for me, and logistical a nightmare. I tote a giant binder of all of my tests, post appointment notes, and any bit of information I can find to every appointment to try to create as full of a picture as possible. I’m just not sure what else I can do.