u/Creative_Writer7828

I’ve been having severe neck pain at the base of my skull, migraines, dizziness and dysautonomia symptoms for the last year. The only thing that helps is laying down with the base of my head supported on a heating pack. I spend about 75% of my day laying down otherwise my head gets too heavy and it’s painful. I was diagnosed with EDS in December, waiting on a geneticist for an official subtype but I suspect hEDS

I’ve seen ortho, rheumatology, and neurology. All referred me to pain management. MRI showed some bulging discs and degenerative changes, as well as my neck being too straight, doctors said this was all normal. I managed to get my ortho to refer me for a standing MRI, but she doesn’t know how to read it for CCI, and neither do any of my providers. Everyone seems to agree it’s migraine related but I feel like they’re brushing me off, because I didn’t get migraines before this. Even my neurologist shrugged and said he didn’t really think it was migraines, but he didn’t know what it was, either

I’m in New York, I haven’t worked in a year because of this so my options for private practices are limited, I’ve run out of places in my area (small city) that take my insurance and I’m getting desperate. I feel crazy because no one believes me and it’s not getting better.

Does anyone have similar stories and how did you get the support you need? Even if I’m not a surgery candidate (surgery terrifies me) I want to know what’s going on so I can act accordingly, my ortho told me I couldn’t make it worse and to go live my life, but every time I hold my head up for too long or tilt it wrong the symptoms are awful so I don’t really believe her. Any suggestions/stories welcome! I just feel really lost and alone in this

I’m historically really sensitive to medications, so when I was initially prescribed LDN, I started really low, at 0.1mg. I took it for about two weeks and noticed

- weird spotting like I was on my period but I wasn’t, and I have really regular periods from being on the pill forever
- severe constipation, like, wouldn’t have pooped for a week if I hadn’t used a suppository when I usually poop daily
- the worst one, noticeable depression/suicidal thoughts when I’m not depressed typically. It started slowly, by the time I realized I stopped immediately and in a few days I felt normal again

I will say my gut didn’t go back to normal for weeks and that was super frustrating

After that I tried 0.5mg, and only lasted two days with the same side effects, but stronger

Went back to my doctor this month and he said to maybe give the 1.5mg a shot, and that sometimes people have paradoxical responses at super low dosages. I really would love for LDN to work, it’s such a miracle drug for so many people, and I’m really struggling with fatigue and inflammation. But I’m terrified to try the higher dose. Has anyone had any experience with this??