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About Kate2011

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    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. For me it depends on the year. I'm 5'10 and have always been around 170lbs (except when I got to college and gained some weight pre-dysautonomia. When my symptoms spiked in college I went from 180 to 145 in like 2 months. Then a year later I had massive weight gain (145 to 232 in like 6 months). Now, I'm seeing a weight loss trend again. Last month I was 230, now I'm 210. Idk if it will continue yet, but we'll see. I don't need the extra weight (i never had it before anyway), so I'm not too worried but i'm def keeping tabs on it. I seem to either gain or loose drastically when symptoms
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. I just tried having a half glass of wine last week. I feel asleep very soon after and woke up with the worst hangover I could have imagined. It wasn't worth it in my opinion. But hey you can always try and just go from there.
  11. Thanks for the advice, guys. Just to clear some details up I didn't actually test positive for celiac I just tried gluten free because my doctor said I may still be sensitive to gluten. Also, I know I'm sensitive to certain types of dairy, but not all cheeses bug me (I do tend to drink kifer dairy free stuff and dairy free milks like silk brands though because milks really bothers me). Also, I'm not a vegetarian, but at the moment the thought of meat is making me sick to my stomach...I'm not really sure why to be honest. This has started happening with other foods too (they literally make
  12. Hey guys, just looking for some advice. My symptoms have skyrocketed all of the sudden. Nausea being the worst. I'm still gluten free but lately almost everything is making me sick to my stomach. I seem to only be able to stomach one small snack at a time. For example I had a couple slices of cheese for this morning, then a few hours later I had a handful of carrots, 3 or 4 hours later I had a few tablespoons of peanut butter. That was fine, the problem comes when I eat almost anything else. Like, tonight I had a little serving of mashed potatoes, a few cooked carrots, and some plain gre
  13. I don't have the same issues as you do in the kitchen but have you tried kind of snacking all day and not making full meals? My nausea is so bad right now that I can't stomach real meals so I tend to have a couple pieces of cheese, a few hours later have some carrots, a few hours later have some peanut butter... you know? Like I said totally different problem but maybe on bad days just avoid cooking. Good luck!
  14. I'm not sure if this was just a precaution but my doctor told me to keep eating normally until I had the blood work done (mine came back negative for celiac anyway but he thinks it may still be a sensitivity)
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