u/audiodev66

Im taking LDN for my hEDS, POTS and MCAS. My brain fog and pain has become debilitating, like i literally cant think idk the last time i felt like an actual person.

I tend to react badly to medications. I have a lot of allergies, and tend to get side effects from meds that people dont usually have. Its very frustrating and im worried about starting the LDN. I can only get it at 1.5mg, idk if i can take the capsule apart and try to do even lower? The goal ive been given is 4.5mg but my doctor first perscribed it at that dose without being told to titrate, so, i dont trust to talk to them about help with this med.

I also have CPTSD/PMDD/pretty severe depression and chronic suicidal ideation and wasnt warned that it could worsen on this medication, which also worries me.

What can or should I do to prepare?

So i know this is very common with eds but has anyone successfully gotten diagnosed with it and how did you do it? I've been fighting for a while trying to get help and finally saw a neurologist and tried to state despite my neck mri being "normal" (I did have Nonspecific loss of artery fluid, getting blood vessel imaging done but idk) i have horrible neck and head pressure all of the time. Vertigo and muscle pain and nerve pain, i cant sit or stand for too long because it puts so much pressure on my neck. As far as I was aware to get imaging to check this xray or other imaging has to be done whilst sitting or standing- as it wouldnt be visible if youre laying down during imaging. Ive been perscribed propanaol, triptans and then in works of getting botox. ​but im just really really worried about spine degeneration and getting worse over time. Any thoughts or help is greatly appreciated.

I started flaring a couple days ago, usually I can handle the flare and it isnt too bad. But the last 3 days have been absolutely hell. The only thing that i can think of thats changed is we got a small heatwave and now pollen is crazy?

My joints hurt so bad, I am beyond exhausted (im sleeping through the night and can get through 3 or so hours of being awake, then need to nap again), I had a full blown attack last night just from showering.

i have been taking allegra 24hr + hydroxyzine 10mg. Cant do zyrtec and benadryl. I dont have an allergist doctor, yes im working on it, but my only choice right now is a speciality clinic where just eval is $500 out of pocket. im working on a low dose naltrexone perscription but its been delayed due to the dr not prescribing the titration dose.

If anyone has ideas on what i can be doing for myself please help. Im so tired and achey.