Stories
Privacy
Download
See Alike in...
Alike App
Browser
717d
Anyone else have multiple forms Dysatonomia? Looking to make friends with people who understand. 31 F PNW, USA.
4
25
Share
Disorder of Autonomic Nervous System
Hypotension
Chronic Disturbance of salivary secretion
Chronic Backache
Chronic Tachycardia
Generalized pain
Tachycardia
advertisement
708d
That's ironic as my degrees are in social and behavioral science (anthropology, sociology, and psychology) with a double major in ethnic studies. Not that I ever used my degrees. I have a fairly small family. I have 3 older brothers, 4 aunts and 4 uncles, and no full blooded cousins (a few half cousins who are all 15+ years older). Did not have grandparents growing up either. It is total BS how they want to say medications "aren't good long term" like nothing is good long term. Being ill and in pain is not good long term. Like what is the alternative? I can't even take NSAIDS as I've now developed ulcers 4x from trying to take them so my only option is literally Tylenol (and cannabis) 🙄 Yes, I am in pain 24/7 though it has been 10 years of it now. Have it managed as much as I'm going to get. I'd say my worst areas are neck/shoulders, mid back, and low back/hips. Pain is like a constant hum in the background. It does stop me from some activities because if I overexert myself it will aggravate my pain. I definitely don't miss days like that with POTS. Some days it was so bad I'd have to crawl the less than 10 ft to the bathroom. I don't get full syncope but that's probably because I get strong pre-syncope warnings. I lose my sense of hearing and my sight when I'm close to passing out. Usually if I sit or lay it will pass. Beta blockers did not work well for my POTS, but my autonomic specialist put me on Florinef and it has made a HUGE difference for me. Reduction in symptoms by like 80-90%. I hope today will be a much better day for you ❤️
2
713d
I do too. I’m also in FL with temperature dysregulation, neurogenic bladder, severe orthostatic hypotension, and tachycardia.
1
@Harmony5kw I have hypovolemic POTS, autonomic motility disorder, and Fibromyalgia which falls under the bracket of Dysautonomia also. I feel you on the temperature dysregulation. I'm in sunny California and idk how anyone survives in 100 degree heat or snow!
@CoffeeAndDogs I also have severe back pain with chronic regional pain syndrome so I cannot deal with the cold. I grew up in Michigan so I was used to the cold but as my back deteriorated so did my ability to deal with the cold. So in 2014, I left and now live 5 miles from the Gulf of Mexico. I ❤️❤️❤️ it but haven’t really been able to make friends since I am somewhat housebound and on disability (poor as h*ll). Never been to Cali but it looks beautiful from top to bottom.
716d
Yes I do! I cant do really anything without becoming tachycardic
715d
@EllaMaee I have been there, it is really rough!
0
First, the name "Coffee and Dogs made me smile" hehe. 😊 I have neurogenic bladder, gastroparesis, and serious issues with temperature regulation. 🥶🥵 I'm 33 and in FL! 👋
@InconclusiveResults Haha thanks! I hate coming up with user names. But I figured coffee and dogs is perfection lol. And you poor thing. Temperature dysregulation in Florida sounds like a nightmare!
@CoffeeAndDogs I agree--solid choice though!! ☕️🐶 Yeah, I have had a few heat strokes over the years, but I'm scared to move anywhere where it snows, haha! 😅
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Write your question here...
Download Alike for the full experience
Copy Link
Copied
Discover your Alikeness™ with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
4.7 Ratings
Scan code or click below download the app
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
Alike health
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Related Questions