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About Eillyre

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  • Birthday 09/06/1983

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    New Jersey

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  1. I've been taking Mestinon for years now for orthostatic issues--it has made a huge difference in my case. I have noticed some side effects (nose runs almost constantly and my eyes tear easily) but I can live with that small inconvenience. I still have much more trouble functioning in extreme heat or cold, but I've gradually gotten so much of life back. I tried weaning off of the Mestinon a couple summers ago to see if I still needed it…I did! It was not a pretty situation and took a little while to get back on a more even keel.
  2. SarahA33 & Dyspatient, great points about taking online classes. I did some online classes through our local adult school before starting at the university, which was a great, inexpensive way to build some new skills and get back into studying after being so disabled. I also took a couple of hybrid classes at Rutgers--we met once a week in person, but did most coursework online. It was a nice way to get some in-class time, but still have the flexibility to work around my health issues. Mplocki, you mentioned that your son was having trouble with grades because he had to miss so much schoo
  3. As a POTSy just about to graduate from college, I thought I'd chip in a few thoughts about my experience at Rutgers University in NJ. I didn't interact a great deal with the disability office because I I found ways to function without involving them most of the time. All I requested were initial university placement testing in a quiet room and an additional 25% time on very short exams to make up for brain fog issues--I only used that accommodation once in a while for the first couple of years as most professors gave plenty of time anyhow. My disability advisor was supportive; I even wondered
  4. Oh, I can sympathize with where your son is--I still feel that way sometimes! The spectrum of symptom severity varies so widely and can change over time, making it hard to anticipate function ability in the future. I've heard a number of success stories from people who had POTS onset in their teens, though. My own quality of life has improved more than we ever expected. I was diagnosed about 10 years ago and life looked pretty grim. Just being able to walk around the house without fainting or being able to maintain a conversation were causes for major celebration back then. Getting out of be
  5. Hi all! Just wanted to pop back in to say hello and share some news. As some of you may remember, about 6.5 years ago I started college (hence my sudden decline in forum activity!). Today I turned in the last assignment of my undergraduate career--I graduate in May! Thank you for all of the support you've offered over the years, my dear POTS friends. It's been a long haul, but I finally made it through! I need a rest, but I'm looking forward to whatever comes next. Cheers, Angela
  6. I had an excellent Mayo experience with Dr. Low. It's an amazing hospital--very peaceful and wonderfully efficient! Even the shuttle bus drivers were friendly and thoughtful!
  7. Hi all! Just passing along 2 questions from a possible dysautonomia candidate: 1) Have any of you experienced persistent nausea (not medication-related) for several months to the point that you had significant weight loss? 2) If so, what kinds of treatments have you found helpful in managing it? Thanks!
  8. I did fine on Afrin. My doctor prescribed it during a recent 2-week bout with a cold and bronchitis.
  9. Faith, my answer is yes on all counts! Mayo & Dr. Low were the real turning point in my illness. He's an excellent listener and paid attention to everything I had written down for him. Based on my tests and the way my illness presented itself, he suggested that I try Mestinon, which has worked wonderfully. As for the supplements, I would say that the difference they make is not nearly as immediate or "spectacular" as the Mestinon (the last time I missed a couple doses of Mestinon, it was VERY apparent!), nevertheless I do feel and think better when I've been on the NeuroHelp for seve
  10. I hesitated voting in this survey because I'm still gradually improving--I hope people reading the survey results will consider that these answers are not necessarily "set in stone" so to speak.
  11. Thanks for posting this, ramakentesh! I hadn't seen this article yet. Angela
  12. Welcome, Kady! Glad you found us! If you've read many of our posts, you've probably realized that OI, as with most dysautonomia, usually requires a fair bit of trial-and-error. So I guess the best advice I can give is to be patient with yourself and to be ready to venture forth boldy in your quest to find things that lessen/eliminate your symptoms. You probably will want to get in to see an OI/dysautonomia specialist whether or not you try Florinef, but as ajw posted, it can take several months to get an appointment, so the question becomes what to do in the meantime. I was 20 when I starte
  13. Welcome davidsmom! Ever since I first became ill, I have had more trouble with symptoms in late fall and early winter. It's a pattern that we've come to expect and so we take extra measures to try to minimize the impact. The cold plays a significant part in it for me; I end up using precious energy to stay warm. On warmer winter days, I have less trouble with fatigue. I've taken to buying some cashmere clothes when I can get them on big sales; they're very warm, but not nearly as heavy and tiring to wear as other wools or lots of layers. Light issues seems to be part of the exacerbation a
  14. I haven't any POTS pregnancy experience, bizbiz, but wanted to wish you a cheery welcome anyhow! Congratulations on the baby, too!
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