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CoffeeAndDogs

742d

Anyone else have multiple forms Dysatonomia? Looking to make friends with people who understand. 31 F PNW, USA.

    • CoffeeAndDogs

      733d

      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 ❤️

    • Harmony5kw

      738d

      I do too. I’m also in FL with temperature dysregulation, neurogenic bladder, severe orthostatic hypotension, and tachycardia.

      • CoffeeAndDogs

        738d

        @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!

        • Harmony5kw

          738d

          @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.

    • EllaMaee

      741d

      Yes I do! I cant do really anything without becoming tachycardic

      • CoffeeAndDogs

        740d

        @EllaMaee I have been there, it is really rough!

    • InconclusiveResults

      741d

      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! 👋

      • CoffeeAndDogs

        741d

        @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!

        • InconclusiveResults

          741d

          @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

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