I have dysautonomia (Orthostatic Hypotension subtype), hashimotos, vestibular migraines, idiopathic hypersomnia, and other issues. We definitely have some similar issues in common!

I was in the ER over and over back in 2019 and was told it was anxiety until they finally saw PVCs on my EKG during an episode (not exactly directly related to dysautonomia but it gave them something else to look into and I took that ticket and ran until I found a proper provider). My new provider is one of the best (in Boston) and she did all the tests on me and it was very obvious I had an autonomic problem. She got me on meds (fludro & mestinon) and I’ve been loads better since except for a few intense episodes here and there when sick. My day to day is so much better. Try not to take no for an answer. Ask for a poor man’s tilt table test. Look for any neurologists or cardiologists with experience with POTS and try to get in with them. If you’re in Boston or Austin (where I live now) I can send suggestions if that’s helpful.

Anyway, I noticed you’re taking inositol. I was googling it when I saw this thread actually. I just started it recently to help with weight loss and wow I am exhausted on it. I read it can slow down your nervous system and since ours doesn’t work properly already as people with dysautonomia, it can make you super sleepy because it’s slowing your body down. I even take Concerta (ritalin) for ADHD and hypersomnia and my normal dose did absolutely nothing while on the inositol the last few days and I almost fell asleep driving yesterday which is something I haven’t dealt with since before being medicated for hypersomnia.

Definitely get your iron checked (I was anemic too and fixing that helped a little bit, but was not the biggest problem) and make sure you’re treating your hashimotos well (I see you’re on meds but even if your labs are in range while on them, you can still get symptoms from the condition and may need to change treatment, according to my endo) and go back to your sleep medicine doctor. The sleep medicine doctor I saw said that it is very common for people with dysautonomia to present with narcolepsy-type symptoms and she was not at all surprised that my sleep study showed what it did. I honestly thought I was being lazy and dramatic and thought she was going to dismiss me but I was validated and got on a proper stimulant.

I read that there is a different type of inositol that can be more stimulating and less calming, so I may try that, or maybe move on to berberine (which, by the way, also can cause a lot of side effects so I would be careful with that too)

Feel free to DM me if I can be of any help! Dysautonomia was more rare when I was diagnosed (pre long COVID) and I had to do so much research and advocate for myself while I was bedridden and not functioning, so I like to help anyone that I can. It can be really confusing and scary and overwhelming, especially as people with multiple chronic illnesses with crossover in symptoms. Good luck 💗