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About Kate2011

  • Rank
    Advanced Member
  • Birthday 04/03/1989

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  • Location
    Titusville, Fl.
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    I'm 24 years old and I work part time as a Behavioral Therapist. I was diagnosed in 2011 (my senior year of college) at age 21, but I've been extremely symptomatic and seeking medical attention since age 14 (although now doctor's seem to think I've had it since birth). Dysautonomia definitely makes life harder but I'm slowly figuring it out.

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  1. It works wonders for me. :-) But yes, I HATE that warning. It's just scary. :-/
  2. Yes, my whole life. In fact it's my GI history that's making my doctor's think the Dysautonomia has been since birth. I have tons of trigger foods, for me it's actually easier to list the foods I can eat safely, but I won't go into that now. We're worried I may have Gastroparesis so I'm on Reglan (which has helped), and I already have severe stomach pain, GERD, IBS, and what seems to be cyclical vomiting. Good luck and remember you're not alone!
  3. Hey guys, if you're in Florida and looking for a support group, I'm putting one together. Our first meeting will be the 28th of April. Please message me for more information. Thanks, Kate
  4. Hey guys! Is anyone interested in participating in an Orlando, Florida support group? There are 3 of us currently interested. We're thinking of meeting for brunch one sunday morning a month. Anyone interested let me know (either send me your Facebook info or your email address and I'll add you to the list)! Thanks for your time and hope some of you can make it out! Kate
  5. What rolling stool did you get? I'm having trouble finding one tall enough to do anything with. :-/ Someone actually recommended I get a wheelchair to use in the house. Has anyone tried that?
  6. So, odd question but I have a really big problem with daily living skills since my symptoms started acting up again. Laundry, making my bed, and just picking up things on the floor when I straighten my room are especially BIG problems for me. The bending, sorting, standing, folding, moving from washer to dryer (especially) all cause some really serious lightheadedness and near fainting symptoms (I loose my vision mostly - it just tunnels to dark and I get really off balance). I don't usually pass out, but it's not out of the question either. Does anyone else have these issues? What do y
  7. This is scary similar to my situation! Down to the whole brother issue! I have a brother and experienced similar things. Someone needs to develop a dysautonomia dating website! lol. Oh God no! I'm single and in my 20's so I completely understand needing someone to understand but can you imagine how difficult life would be if our spouses had the same issues? I don't think I could cope with that. lol. I can barely take psuedo-care of myself. I can't imagine wanting to to take care of someone else too. And with the same issues...we'd always be getting sick at similar times and possibly get
  8. Hey guys, Just wanted to share a link to an organization I discovered recently. I've found them to be a really great resource and it makes explaining the whole Dysautonomia thing easier to other people. :-) So often, it's hard for people to understand the far reaching effects of this condition. But anyway, it's not Dysautonomia specific, but it's a great resource! http://www.invisibledisabilities.org
  9. I have really odd vision too and sometimes I have issues like this. We actually found out that because of the Dysautonomia I developed Diplopia (double vision) and that the flicker was my eyes refocusing. I wear glasses now that help a bit but there's really not much they can do for it. I still have 20/20 vision so the eye doctor didn't catch it during regular exams. There's a special test they do to see if that's the cause. If the computer's the problem though you should invest in some anti-glare glasses. They really help (as I used to work almost exclusively on a computer for hours on
  10. I actually don't mind it. I don't know what happens with my body but I also fall asleep (like dead asleep). It's kind of weird. I get the same kind of drugged sleep feeling when I'm having a really bad episode, but it's definitely not a normal sleep is my point. I don't mind it too much though because I always wake back up and after a day of resting I'm usually good to know. It doesn't usually trigger anything else. (I definitely need that day of resting afterwards though.) Added bonus, I've never had to sit through a whole flight! :-) They always seem to be over in like half an hour
  11. Hey again guys, I just had it recommended to me that I get a service dog through a local non-profit. Does anyone have any experience with service dogs? They said they can train the dog to call a programmed number (911/neighbor/whoever) with a doggie button if you pass out, wake you up in the morning, prompt you to exercise, sit with you after you pass out, recognize triggers and help reduce stress that can increase symptoms, even bring you the phone or other objects if you're really having a down day. I thought it was a pretty impressive demo :-) I'm seriously considering it, if anyone ha
  12. Ya, IDK, I've been on 60mg of Sudafed for about a month now (Dr. prescribed) and I do feel better, obviously I still have episodes but they seem to be milder. But then again I don't have a POTS diagnosis, I have Dysautonomia without any other description as far as I know. (I have exercise and orthostatic intolerance as well as a plethora of other symptoms but idk what they add up to exactly, so far though I've never have any problems with tachycardia that I know of. I actually got the idea because I spoke to woman who's on Ephedrine for her Dysautonomia. My HR IS pretty high on it, but I'v
  13. I had a potassium problem when I was on florinef (i was technically on fludrocortisone but it's the same thing). I only started experiencing a problem after my dose was raised to dangerous levels though, the cardiologist I saw kept upping my meds to reduce my symptoms until I was taking about 6 times the recommended dose. (He then told me that if that high a dose didn't fix my problem I must have Munchousens.) It took going back to my PC to get a blood test that revealed that my potassium levels had dropped dangerously low. We added potassium supplements, but fludrocortisone never seemed t
  14. I've had 2 experiences like that. Once, I went in to see a Dr. once and he actually insisted I fill out an anxiety checklist before he would let me leave the office. The second time I was in with my old cardiologist (who had upped my fludrocortisone to 6 pills a day to try to get rid of my symptoms) and things were just getting worse. I was in yet again telling him this and he told me I had Munchousens and I needed psychiatric help. I went to see my PC who did a blood test and it turns out my potassium had bottomed out because of the high dosage of fludrocotisone. It was one of the most m
  15. Hey guys, Just wondering if anyone here is on Ephedrine. I'm going to see my cardiologist in March to see if it'll be a viable option for me (I read about it being a possible treatment for Dysautonomia), and I just wanted to know if anybody has any experience with it. My symptoms have been getting much worse recently and I need to try something new. My PC put me on Sudafed in the meantime to see if I see any positive changes and I am finding that I have more energy. I'm wondering about the side effects too though. I've been having trouble sleeping the past week or so (I've only been on
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