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About Eillyre

  • 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 school from illness. Some of our local libraries have DVDs and CDs of lectures by the Teaching Company which can be a helpful resource when prepping for college. I've watched MANY of their courses (some lecturers are better than others), and used some of their math series to prepare for university placement exams after years of being away from math. It was helpful being able to re-wind and watch as many times as I needed.
  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 if he looked up POTS because he asked if I needed an air-conditioned or first-floor classroom (to avoid doing stairs) or special parking permit to minimize walking distances without me mentioning any physical limitations. I did very well in spite of many limiting factors by creatively adjusting to them. The main keys to my survival included: 1) Attending part-time when needed. It was more expensive, but a necessity several semesters in my case. The university actually has a relatively large non-traditional student population so it didn't give me a hard time about it. By taking summer courses, I was able to finish an intense 4-year B.S. program with an additional minor and certificate in 6.5 years. It was long and wearing, but I had fully anticipated taking 7-8 years at the beginning. Life's not a race anyhow…. 2) Living off-campus (at my parents home) and commuting to school. It meant that I didn't get to partake in the usual college out-of-class socialization, but it allowed me to rest after classes without dealing with all of the noise and interruptions typical of dorm life. I still made some close friends and participated judiciously in social events, but survival was my main goal. One of my classmates who commuted 1.5 hours to school sometimes crashed at our house overnight and loved how much work he could get done in my quiet workroom compared to at school when all the architecture students were getting punchy with sleep-deprivation! 3) Building a good reputation from the start as a bright, dedicated student. Since I smiled, turned in my assignments on time, had excellent participation in class as a rule, and was known for always producing high quality work, faculty members were cooperative when I occasionally had to take a little time off if I was getting burned out. Feel free to pm me if you're interested in other strategies that I found helpful in dealing with school, going to conferences with the department, etc. Best of luck to your son!
  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 bed was literally a 3-hour process…and then I would collapse on the floor. It was hard to imagine ever being able to go to college or support myself. We were able to find some treatment regimens that worked well for me, however, and I developed a lot of symptom-coping strategies, such that I was able to eventually start university part-time (1 course per semester), living at home. I had to develop a lot more symptom-management strategies to function at school, but each year I was able to do a little more, such that I was eventually managed 16 credits one semester and was able to study abroad in Northern Italy and Rwanda on scholarships last summer (really, really thrilling!). I will graduate summa cum laude in May and have received a number awards. It was very, very difficult. I had to deal with major burnout on a number of occasions when I tried to push myself too hard, and so many times I just wanted to crawl under a rock and hide away for the rest of time. Every milestone has been something of a shock, because when I started school, I was fully prepared to just scrape through for 10 years. Nevertheless, it has been rewarding. How I manage in the working world is my next challenge. I majored in Landscape Architecture, with a minor in Urban Planning & Public policy, not particularly good choices for someone with POTS: hours upon hours spent cutting and recutting models late at night; staring at a computer screen for even more hours trying to learn computer graphics; slogging around in snow for hours doing outdoor site work; lots of public presentations in front of clients (smiling and asking people's opinions go a long way in covering over brain fog issues!)…. Never mind the sound of machinery and power tools on construction sites! Still, in spite of my limitations, I can bring a lot of great qualities to a job. I know that I need to find a place that will allow me some flexibility, because I cannot handle a really fast-paced, high-pressure work environment at this point in my life. The right place will show up on my radar…. My family has been super supportive through the whole process. My parents have been great about not pressuring me to move faster in life; they remember only too well how rough things were early on in the illness, and they have celebrated every little step forward and encouraged me through every big step backwards. If you or your son want to chat about managing college, feel free to contact me!
  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 several weeks/months than when I've purposely stopped taking it for a time (just to see what happens). The only difference that I notice when I've been taking the protein is that my immune system seems to protect me better.
  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 started having my POTS/CFS problems, and actually started Florinef before seeing a dysautonomia specialist; the cardiologist I went to couldn't find anything wrong with my heart to explain why it would start racing, but did notice that my BP was dropping when I stood up, hence the Florinef (she was convinced that I was dehydrated until she found out just how much fluid I took in each day!). Florinef, along with increased salt consumption helped somewhat initially, but eventually we gave it up because it ceased to have any noticeable positive effect and gave me a killer headache. Some people on the forum find it a tremendous help, however. The only way to find out if it helps you is to try it. I would find out from your doctor why he calls Florinef a last resort, though. Is there a medical/chemical reason why it would be likely to harm you? If so, you might want to skip Florinef and wait to see what other options a specialist suggests instead. If your doctor just prefers to exhaust other options before starting you on a medication, and if you feel that the non-medication options are not working well enough, you might want to consider trying Florinef for a little while under your doctor's supervision. If it helps even somewhat, you'll not only feel better but you'll also be able to tell the dysautonomia specialist what it's doing for you. If it doesn't help, the specialist can rule that medication out as a possible solution or perhaps gain some clues from the way that you reacted to it. One of the things that Dr. Low said he appreciated about my sizeable (!) portfolio of records was that by the time I went to see him, I had already had so much testing and standard treatment-trying clearly documented (e.g. Florinef, Midodrine, etc.) that he had a good idea of which direction we should probably go next. Sorry not to be able to give you something more concrete! If you want to PM me with any questions or just to chat, please feel free to do so! Welcome again to the forum! Angela
  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 as well. When I was homebound, I found that using a light box in the winter (like many people with SAD use) helped me be a little more productive earlier in the morning (e.g. could do some reading/studying, etc.). As my health has gradually improved enough to allow me out of the house to get natural sunlight, I have not needed to use the light box. We also changed many of our light bulbs to full-spectrum light bulbs (e.g. GE Reveal bulbs), which made the quality of light indoors much more pleasant, especially on overcast days. It's also very easy for me to accidentally overexert myself in the winter, as friends come back from college to visit me on their breaks and family members come to celebrate a string of holidays with us (Thanksgiving, Christmas, New Years). And, of course, if I catch one cold or virus, recovery is a matter of weeks rather than days. I've also noticed a change in sleep patterns in the winter time. Even though this winter has been by far the best for me since I first began having CFS/POTS symptoms (was actually able to start college part-time in the fall & avoided any major health crises!), I did have a sudden, inexplicable resurgance of sleep troubles in the late fall. This seems to happen every fall. As with past years, I went back to taking melatonin at night and after about 2 weeks, I was able to sleep without needing to take any. As a said before, more trouble with symptoms in the winter is definitely a pattern that we've noticed, so we work around it. I'm extra careful to protect myself from overexertion and viral attacks, I spend as much time near sunny windows as I can, try to get out each day get some sun, and don't get angry at myself for not being as productive as I am in the spring & summer. When I need more sleep, I sleep in. If my brain can only read for 10-15 minutes at a time, I read for that long and then switch to listening to music, watching a documentary, looking at pictures in a book, or whatever else I can manage. If I make a list of things I want to accomplish on a certain wintery day, I anticipate that I will only be able to complete 1/4 to 1/2 of the items on the list; if I can do more than that, I celebrate! I'm glad that you were able to finally get a diagnosis--it's so hard to be so sick for so long and not really have any leads to follow. If you want to PM me with questions or to chat (with me or my parents), please feel free. We'd love to help if we can! Welcome again! Angela
  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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