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Barry

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  1. I know meds are important but is there anything aside from the meds that help you or anyone else feel better? That vasovagal maneuver or w/e doesn't work for me at all.
  2. I'll save it. Looks like a bunch of good information so far. I'm interested in natural ways to manage dysautonomias because I don't like having to take these meds. Don't have a choice for now though & it seems meds do help lots of ppl. I still want to have imaging tests done though. Exercise was best way to manage but it's "progressed" to where I can barely do that 1-2 times a week if lucky.
  3. lol yeah I know how it is. "How long will I be up before sitting back down for sweet relief."
  4. Wow that is great info. Thank you Kim. I'll look into it.
  5. If dysautonomias are all malfunctions of the nervous system, why would florinef be the 1st treatment? What about more focus on the spine, or nerves like the vagus nerve, etc. CTs and MRIs? It's frustrating being very ill and not knowing why. I know research is being done but it's very frustrating
  6. Thank you Kim. No, I went to Greenville Memorial which is closer to me. I'm not sure what my BP was doing, only that I felt awful when the table went up, then passed out & my heart stopped for 7 secs. My BP is usually normal-ish, sometimes even high. My pulse is very low when at rest. Higher when excercising obviously, but I can barely exercise anymore. I took the florinef earlier & my BP is already higher when I checked + headache. I actually feel worse now. Weird. Can dysautonomias be life-threatening or do they just create very bad symptoms? That's what I wonder.
  7. Thanks mountain girl. Did the florinef help you feel better overall? Because for me it's like I can't even get up and walk around without feeling like I just ran a marathon. Is it supposed to work quickly or build up over time? You may not know but I wanted to ask anyway.
  8. Hi, thanks for replying. I'm in SC. I was diagnosed with eosinophilic gastroenteritis in 2011. I went to the NIH for clinical trials on it. That went away after being on Prednisone but the flare up was horrible. Anyway, not much I can do about gastroparesis except watch what I eat. It seems to me it's all neurological / autonomic. What do they do if that's the case? I guess I'll just have to wait to get into Vanderbilt, but I don't know how to manage in the meantime. I was just given florinef 0.1 mg. I'm worried it will increase my BP or have other nasty side effects. Thank you for replying. I know nobody really has any concrete answers. I'm just trying to figure out something, even if it's little, that can help.
  9. Hi everyone. I'm a 31 yr old male who's been healthy most of my life, but now everything has changed. I recently had a tilt table test done & when in the upright position I blacked out (lost consciousness) and was told my heart stopped for 7 seconds. Diagnosed neurocardiogenic syncope. The reason I had the test ordered was because I've been terribly short of breath with chest pain & extremely fatigued for many months now (numbness also). I also have gastroparesis diagnosed last November. Anyway, my symptoms are only getting worse quickly and I'm literally bedridden & the doctors I've seen have still just told me I'm gonna be okay and to just increase my fluid & salt intake, which isn't even helping. Even right now I'm in bed struggling to breathe properly w/ numbness in my legs. Is there anybody here who might know what I should or even can do now? Anyone in the same position who knows anything that can help? Doctor said he would refer me to Vanderbilt but it could take a long time. It really doesn't feel like I have a long time to be honest. Sorry for long post. I just don't know where else to turn? I'm desperate. I doubt going to the ER would help me. I tried that a few months ago with terrible symptoms and they sent me home. Thank you very much for anyone who took the time to read this.
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