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Everything posted by Eillyre

  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!
  15. Hi aj! I can totally identify with what you've described. When I was very sick with my POTS/CFS symptoms, I had so much trouble with my arms: putting my hair in a ponytail, washing/brushing my hair, brushing my teeth, etc. My mom often ended up washing and or combing my hair for me because it hurt and wore me out too much to do it myself. We did all sorts of testing to try to figure out what was causing it (including the things previous posts have mentioned), but it stumped us all. To deal with it, I basically avoided raising my arms above my shoulders or using them too much, because trying to "work" my way through the pain only made things worse. As my overall health has gradually improved, the arm issues have, too. Once I could do so without the painful, fatigued feeling, I went back do doing some gentle push-ups and light arm weight exercises to keep the muscles toned. At this point my arms only really bother me on the very worst of days, and if I rest them, they feel better as the other symptoms gradually quiet down as well. I can use my arms essentially normally now, although I still leave heavy lifting to others (to conserve energy) and find it more comfortable to wash my hair in the sink rather than in the shower, where my arms would be raised above my shoulders for a while. I know this isn't much help--I would dearly love to know the answer, too!--but I wanted to at least let you know that you're not alone in the wacky arm issue. I thought it was interesting what you said about gravity as well. Most times that I had to lie down, putting my legs up helped. Other times, however, I just felt like I needed to lie as flat as possible and mold myself to the floor; I wished I could sink through the floor, because it seemed like it must help alleviate that "pulling" sensation. Weird, definitely, but true! Hang in there! Angela
  16. What exactly is it supposed to do? According to the FDA description of Mestinon, it "inhibits the destruction of acetylcholine by cholinesterase and thereby permits freer transmission of nerve impulses across the neuromuscular junction." The Encyclopaedia Britannica describes describes acetylcholine as acting "to transmit nerve impulses within the parasympathetic nervous system?i.e., that part of the autonomic nervous system that tends to induce secretion, to contract smooth muscles, and to dilate blood vessels. In preventing the destruction of acetylcholine," medications like Mestinon allow "high levels of [acetylcholine] to build up at the sites of its action, thus stimulating the parasympathetic nervous system and in turn slowing the heart action, lowering blood pressure, increasing secretion, and inducing contraction of the smooth muscles. http://www.britannica.com/EBchecked/topic/...icholinesterase In laymans terms, it's supposed to allow for longer communication of neurotransmitters. Most of our physicians, in prescribing Mestinon, are hoping that this longer communication will result in better ANS regulation of heart rate, blood pressure etc. Have any of you tried it & what side effects happern when taking it? I've been taking Mestinon for almost 4 years, and consider it the turning point in my battle with POTS symptoms. My success with this medication is well-worth what few, minor side effects I've noticed: occasional mild stomach cramps (although taking it with food can help enormously with stomach issues), drippy nose, and more sensitivity of the the eyes to wind (making them more prone to tear up). Of course, results are highly individual so the only way to see if it will help is to try it. Hopefully your doctor has you gradually building up the dose rather than jumping right into 180mg per day (Dr. Low had me gradually working up to normal dose over the course of several weeks); it may take longer to see the medication's full effect (positive or otherwise) this way, but it can really help to minimize any negative effects you might have otherwise--less of a jolt to the body. Some people can get by on a dose smaller than 180mg, too. Like some of the others, I encourage you to search our prior Mestinon conversations for all of the details of our experiences with this medication.
  17. I haven't seen any articles linking POTS and SAD necessarily "biologically" (although there may be some), but it does certainly make sense that people with POTS, CFS, or other chronic conditions that tend to keep them in indoor environments (particularly in winter) would be susceptible to SAD. While my health practitioners wouldn't go so far as to say that I had SAD, I have over the past 5 years of illness experienced definite changes during the winter months (and extended periods of very overcast days at other times of the year) that I never had trouble with before. I had a harder time getting up in the mornings, took longer to be able to function productively during the day, felt more tired than usual, had increased cognitive trouble (e.g. brain fog), tended to stay closer to certain lights in the house, and on very cloudy days did actually find myself feeling a little down and sometimes a little weepy for no apparent reason. Neither my doctors nor I would call it a state of depression (I was usually fairly cheerful actually), but it was clearly tied to changes in how much sunlight I was getting. Lower temperatures did also contributed to the increased fatigue because my body had to spend more energy keeping warm. Trying to get out in the sun even for a little while helped a great deal, although during the years that I was too ill to do so, I had to resort to other options. I have used a lightbox in the morning for 2-3 winters, although this winter I haven't needed to, and found it very beneficial in some respects. I have noticed that even though I no longer need Melatonin supplements to help me sleep during the rest of the year, in winter I always have to go back to taking it, at least during late Oct. & early Nov. to help my body re-adjust. As Rachel briefly mentioned, changing some of our more energy-efficient lightbulbs to GE Reveal bulbs has been helpful, too; they filter out a lots of the yellow tones in regular light bulbs. I find the quality of light much more pleasant and notice that my brain tends to function better when near them, so we put them in lamps and other light fixtures where I tend to sit.
  18. I have not had any increased hr episodes on Adderall at all. I did have some small hr elevations on higher doses of Ritalin (25-30mg range), fluttery palpitation sensations, and trembling (imperceptible to others, but I trembled so much one evening that I couldn't talk). These episodes were infrequent but enough to make us look to other options, hence the switch to Adderall. There are, I'm told, different "families" of stimulants out there. My prescribing physician wanted to use Ritalin as a guinea pig to see how I reacted and then use that information to direct me to something else accordingly (unless Ritalin did the trick). Hope this helps! Angela
  19. On both Ritalin & Adderall, my appetite has been less and, come to think of it, I have had the "disappearing appetite" you mentioned above. As I'm not severely underweight and I make myself eat every so often anyhow, it hasn't been what I'd call a problem in my case. Angela
  20. I tried Ritalin and then Adderall for fatigue and CFS/POTS cognitive issues (trouble concentrating, reading, etc.) -- and no, I was never even remotely a candidate for an ADHD/ADD diagnosis. I found both medications helpful, although Adderall was the better fit for me. I started at 5mg of Ritalin, which helped, but was not ideal. As we slowly increased the dose, I sometimes felt trembly and had fluttery heart palpitations. Nothing serious, but given those reactions, the prescribing doctor thought that Adderall would be a better choice. I currently take 20mg of Adderall about 5 days a week, have had no negative side effects at all from it, and find it just as useful as Ritalin was. On either of these medications, I feel more energetic and find that I am less tired because my brain process information much more efficiently. They've eventually made it possible for me to work part-time and start college (when I'm overall healthy enough, that is). I do have a word of caution, however. Ritalin/Adderall can give you a false sense of energy, make you feel like you can do much more than normal. It can be easy to over-exert yourself if you are not careful with energy maintenance. When I first started taking Ritalin (and subsequently Adderall), I made a careful choice to do only a little bit more than I would normally be able to do. I tried not to think of the pills as supplying extra energy, but merely allowing me to utilize what energy I had more efficiently. Tools, not wonder-pills. That mind-set has helped me avoid over-exertion. I also chose not to take it two days a week, so that on those days I could gauge how much I was able to do without the pills. My non-Ritalin days were never as productive as the Ritalin days (still aren't), but if I managed my energy well the rest of the week, the non-Ritalin days weren't wash-outs; if I had done too much, the non-Ritalin days were a hard crash. Over time, though, since I started taking these stimulants, my energy and productivity have gradually increased even on non-Ritalin days. As this "baseline" energy has slowly increased, I have slowly increased my energy expenditure on days I take Adderall. To my mind it was worth a try. If it didn't work out, I could easily stop and would only be out about $5. If it did help at all, it would be worth whatever I paid for it. In my case, it has proved extremely useful. As with Mestinon, it has allowed such improvement in the overall quality of my life that I would still take it even if it cut 50 years off my life. Angela
  21. Just a quick note for all of you out there who've been following my progress: I was able to get through my first college course without too much trouble. The commute and class time was no problem (thank you for Adderall!), and once I got through the first week's innundation of homework, I was fine. It helped to keep myself about 1 day ahead so if I had less energy one night, I didn't have to lose sleep. For those of you looking for colleges that are "POTS/CFS disability-friendly", I've been very pleased with my treatment at Rutgers University-New Brunswick. My disabilities coordinator has carefully documented my requests and spoken with me about them in detail, even asked about things I didn't bring up: "Will you need to be in an air-conditioned building in summer?", "Will regular student parking and/or bus transportation be too taxing or do we need to get you a special parking permit?", etc. At my request, they let me do placement testing and academic advising over 3 days in a quiet room instead of cramming it all into one long day with the rest of the students. The academic dean has all of the info from my disabilities coordinator and called me a few times to make sure that my schedule of Fall class days/times was not problematic, etc. She even told me not to worry about letting them know how long I would need to study part-time because "we don't want you to do too much too soon and burn-out." It has been so blissfully stress-free to deal with them and without demands for extensive documentation either (although they know that I can provide it! ). I'll keep you posted! Angela
  22. Great to hear from you Jaime! Congratulations on the baby!!! I'm still in NJ, though I have an aunt, uncle, and cousins in San Antonio. :-) Sorry! Hope you have a smooth transition to Texas. Angela
  23. I've been taking it for 3 years now and have no complaints. It has cleared up my orthostatic issues enough (in conjunction with higher soium intake, hydration, avoiding high temperatures, etc.) that were it not for my CFS component, I would be leading a very normal life. There are others who have had negative side effects (e.g. abdominal cramps and issues) but I've only had very minor cramps on rare occasions. My eyes tear more readily when exposed to wind and my nose is more prone to dripping than before I started taking Mestinon, but neither is enough to be an annoyance, especially considering how much benefit the medication has provided. I found it best to start the dose very low and gradually increase it weekly (Dr. Low had me take 6-8 weeks to get up to 180mg per day), and I always ate food and drank non-acidic liquids with my dose to minimize risk of stomach irritation. I eventually switched from the regular form to the 180mg Timespan version and have had not noticed any difference in its effectiveness in my case, although some other patients prefer one over the other. Bottom line: it's not helpful for everyone, but for many of us, it has been the turning point in our illness. To my mind, it's definitely worth a try. Best of luck! Feel free to PM me if you have more questions about it. Angela
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