I have just been diagnosed with autonomic dysfunction or dysautonomia. More than likely pots as well. Im still having testing. But I feel in the meantime I go to dr after dr and I’m getting really no help. I have a chronic headache that never goes away, I can hear and feel my pulse on my right side of my head and constant ringing in right ear. I get so very dizzy and fall. These are just a few of my comorbidities any suggestions would be helpful
Disorder of Autonomic Nervous System
It takes time to adjust to having these sx. I got zero help from doctors after dx. I was hospitalized for 5 days, then underwent testing of all sorts. They seemed to want to prove I didn’t have it - but I’d end up passing out after the tests while still at the hospital, or having serious issues while out at store, etc. All the drugs they gave me made me worse. I had to investigate options on my own and eventually, I got things figured out. Things that helped me list: drinking 64oz minimum of water daily, cutting back on caffeine, stopping all of those SSRI/SSNRI drugs (that weren’t doing anything) and actually CAUSE dysautonomia symptoms, wearing a custom mid-rib hip length corset (and not the lame medical “binder” recommended, eating things with salt (I did take salt tabs for about 6mo), taking metoprolol (regulated BP b/c it was sooooo labile, found a minimal weight bearing exercise (aerial yoga) that increased the “tone” of my vascular system, stopping worrying all the time and accepted that I would feel like shot sometimes.
I’m WAY better now than I was in 2012 - took several years of adjusting things. I have issues every now and then - but I know it’s temporary and I know how to handle them.
Thank you I feel like when my body crashes and I’m so exhausted that people think I’m just being a baby or lazy or it’s all in my head. And these are real I’m trying to work part time but I’m not sure how long I can do that
Acceptance is the only way to get thru all this and remain sane. I had 2 neurologists and a psychologist tell me this - I fought it b/c I thought acceptance meant giving up. It doesn’t. Every moment of fretting and worrying is moments you lose and never get back. Life is too short. When you get to be over 50 - reality hits and your mortality stares you in the face. Instead of bemoaning all I CAN’T do, I am truly happy for what I CAN do. I’m not into all the new age meditation zen crap either - it’s just how I chose to live in my last 30 yrs (I hope it’s 30 more!) - I wasted 15 years whining and feeling that life dealt me a crap hand. I missed out on so much. I never want to waste a moment ever again.
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