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Everything posted by jump

  1. I'm a gluten-free soy-free vegetarian, and my favorite dish is quinoa. You can cook it in a rice cooker (no standing, no stirring!), and it's a grain so I personally find it easier to digest than things with lots of fiber or fat, AND it's high in protein. And you can cook a lot of it at once and then heat it up later as necessary. I often cook a big pot of quinoa and a few different steamed vegetables on Sunday. Then all week I eat quinoa and veggies heated up in the microwave. I have a vegetable steamer and a rice cooker, so all in all it's pretty easy. And it's not nearly as expensive as buying frozen dinners or "special" vegetarian/GF food.
  2. For the most part, I look and act like a healthy 29-year-old woman. POTS affects me daily, but not enough to disable me, and the many ways I've had to modify my life are not necessarily obvious to others. For me, POTS followed a very long and dangerous illness, and I have other things going on that seem to be connected (unresolved thyroid problems, food allergies, etc). I am grateful that my health has improved and I am grateful to be doing as well as I am, but I don't know that I would consider myself a person in good or excellent health, and I definitely feel like I have a complicated and difficult relationship with my health and have for years. I often get comments from people who know me about how lucky I am to be young and healthy. Co-workers will tell me I should enjoy my health while I have it, and then go on to complain about their back pain, etc. People will say things like, "At least you have your health, that's the most important thing." People have told me to "value my health while I'm young;" if the conversation turns to someone else who is very ill with something serious, people will say, "Boy, it really makes you value your health, doesn't it?" When these things are said I usually just smile and nod, and change the subject. But these comments hurt me - because I don't have my health in a lot of ways, and although things could be much worse and I'm grateful that they're not, it still hurts to know that "carefree" gratitude will never be mind to have. When people say "health is the most important thing" it almost feels like they are rubbing salt in a hidden wound, since in many ways I feel like that "most important thing" is forever elusive to me. It also hurts when people tell me to value my health, since I feel like I have fought so hard to maintain the health I do have, and I am certainly not cavalier about my health. I'm not sure there is anything I can say in response that wouldn't sound whiny - since I am acutely aware that I am far better off than many other people, and I can only imagine how hard being completely disabled would be. I don't necessarily want the sympathy or pity of others, and I suppose in one way I'm glad that my struggles are not so obvious to other people. But I still wish that people would think before saying things like this -- I'm sure I'm not the only one who has been hurt by these assuming comments.
  3. Florinef has been the most effective thing I've tried for mitigating my POTS symptoms. Honestly, even if it means I get glaucoma in twenty years, it's worth it, because taking it means I am a mostly functional person. I went from barely being able to work 5 hours a week to being able to work 20 hours a week, and I virtually have NO palpitations anymore and my tachycardias are much less severe. It's good to know potential side effects, but I wouldn't let them stop you from trying the drug. For me it's been the closest thing to a magic bullet that I've found.
  4. I have a friend who does not have POTS and does not have Celiac disease, but does have weird numbers when she gets tested for autoimmune diseases and does have joint pain. RA runs in her family. She does notice a difference in her joint pain when she doesn't eat gluten, even though she doesn't have celiac disease. She stopped eating it for two weeks, didn't really notice much difference, but then did notice an increase in pain when she started eating it again. She doesn't eat completely gluten-free now - she'll occasionally have a slice of birthday cake, etc - but she tries to eat GF most of the time. As far as I know, there isn't necessarily a connection between joint pain and Celiac so much as there is a connection between gluten and RA and other inflammatory disorders.
  5. So, over all my POTS symptoms are pretty manageable right now. I still get tachycardias and feelings like I'm going to pass out, but they are usually restricted to mornings. I'm able to do most of the activities I enjoy, so long as I don't try to do them all in the same week or something. But my fatigue is still overwhelming. I work part-time, and if I want to be able to do a minimum of household chores, socializing, and exercising, I can only work about 10 hours a week. If I work 20 hours a week I'm literally unable to do anything else - I just work my 20 hours and sleep the rest of the time; I can barely even wake up long enough to eat, let alone cook. I'm worried because I'm starting grad school in the fall - just part-time, but I'm genuinely worried my fatigue will keep me from being able to keep up with the work. My doctor wants me to do a sleep study, to see if I have sleep apnea or something else that might be interfering with my REM sleep and making me so tired. But I'm really, really in dire straits financially right now (because I can only work 10 hours a week!), and I have a huge deductible on my health insurance -- so if I got the sleep study, I would have to pay for it out of pocket. Obviously I don't want to do this unless there's a good chance it might be helpful in some way. For those of you who had sleep studies, did it help you find new ways to treat your fatigue? Or was it just more information that didn't really influence your course of treatment? any advice is appreciated! jump
  6. Hi all, Thanks for the advice. My doctor's appointment went well - I felt like she really took my fatigue seriously, which was good. BUT she wants me to do a sleep study instead of testing my adrenal function. Also, I realized from reading the links you all posted, that I'm already doing half of what I would need to do anyway if my adrenals were off - I'm taking florinef and using seasalt. The florinef and seasalt have helped considerably. So part of me wonders, is it really important to also test cortisol? And would my results come back normal anyway, because of the florinef? Thanks again for the help! jump
  7. Hello all, I am seeing my PCP this week, and I want to ask her about addison's and/or adrenal insufficiency again, since I have pretty much all the symptoms, and I also have autoimmune thyroid disease and gluten intolerance, all of which often go hand in hand with adrenal problems. The last time I asked her about adrenal issues, she said that if anything was wrong with my adrenal glands then I would have a potassium abnormality in my routine yearly blood work, so she did not run any further tests. I know from reading here that a potassium level alone doesn't diagnose or rule out adrenal problems. So what tests should I ask her to do, to rule out adrenal issues? Thanks!
  8. This is a tricky one to answer. SOME cardio activity definitely helps my POTS symptoms, and decreases the severity of my tachycardias. But I suspect my POTS was triggered in part by severe over-exercising and over-training, which strained my body and my heart. I know if I push myself "too much" then my cardiac symptoms are worse the next day; I suspect if I pushed myself too much for a period of time, my cardiac symptoms would get much worse. For me, building up to being able to go for a brisk walk has helped me. I think if I tried to make myself jog, or something "more" cardiovascular than brisk walking, I would have adverse effects. Additionally, when I do what is considered moderate exercise, I often reach what doctors would consider my "target heart rate" for cardio exercise - something other people might get to from running or cycling. This, to me, signals that a modest amount of cardio exercise is all my body can handle right now.
  9. Is there anything for people who CAN work, but only part-time? The problem I'm having now is that I can work about 15 hours a week. That totally exhausts me - I can't really do anything else beyond the very minimal (eg, I can't work 15 hours a week AND cook myself dinner AND clean my apartment AND get moderate exercise as recommended by my doc - but in a week, I might be able to work and do one of those things). But working 15 hours a week isn't enough to really sustain myself financially. I can BARELY make it paycheck to paycheck, but only with a little help from my parents, who both just lost their jobs. I can't save anything working part-time. I assume there's no financial help for someone like me, but I wish there was. I'm grateful that I'm not fully disabled, but I hate that I'm facing a lifetime of poverty (I live well below the poverty line) and financial anxiety, all because of an illness I can't control.
  10. I'm so glad this poll was brought up, because I'm struggling with this myself. Everything I've read recently suggests that new research shows that POTS and CFS are probably the same disorder. But my own doctors don't seem to know this, and/or don't agree with this. My EP, who I trust the most, says my debilitating fatigue, headaches and low-grade fevers aren't symptoms of POTS. My PCP, who is really the person who takes care of me since I have to drive two hours and pay a lot of money to see my EP, says the fatigue, headaches and fevers are "just POTS," and there's no need to look for any other causes. I'm worried there might be something out there that could help me manage the fatigue, and I'm not getting it because my PCP says "just POTS." I'm also worried if I pursued a CFS diagnosis on top of POTS that I would just be complicating things, and that people I interact with (at work, at school) would take me LESS seriously. I feel like CFS has a stigma that POTS doesn't have, because most people have heard of CFS and have heard the out-dated debate about whether or not it is "real," whereas no one has ever heard of POTS so they don't think to question its validity as much. Plus, since I believe that whatever I'm suffering from - be it POTS or CFS or some as-yet-unknown disorder - it's all the same thing, so another diagnosis seems pointless. But the fact is I can't lead a normal life because of my fatigue, and no one seems to be able to offer me any help with this.
  11. Eating gluten-free has been the single most helpful thing in decreasing my POTS symptoms. I agree with others - it's probably a question of figuring out your allergies, instead of assuming we all have the same allergies - but eliminating gluten helped me a lot. Also, I was mis-diagnosed with IBS for years... and I never found relief for my GI symptoms until I eliminated gluten.
  12. Thanks guys! Everyone makes good points, so I'm going to take your advice. I am surprised at how, even after several years of dealing with this, I still have a great fear of appearing to be "making a mountain out of a molehill" or of appearing to be self-pitying by acknowledging that this illness does affect me in significant ways. I do have a tendency to dismiss my own challenges, with a kind of, "well, it could be a lot worse" sort of mentality. This community really helps me! Thanks so much.
  13. Hi everyone, I'm doing pretty well write now, and I am going to be starting graduate school in the Fall. Last time I was in school - five years ago - I had POTS but did not have a diagnosis. I had difficulty keeping up with my work load and had to ask for a lot of extensions. Since that time, my symptoms have improved, mostly because I have learned my limits and I manage my life in a way that supports my health instead of hinders it. Right now I work part-time, about 20 hours a week. I find it challenging, but still manageable. I do better when I am working closer to 15 hours a week. In graduate school, I will be taking two two-hour classes a week, and working about ten hours a week (so about 15 hours a week of commitments). I actually think this schedule will be easier than what I'm doing now, because the work will be more seated than it is now. I chose this schedule because I believe I can keep up with it, and that I won't need to ask for extensions, etc. I can't decide if I should register with the disability services on my campus. The guidelines say I should only register if I believe my chronic illness will interfere with my ability to do my work - I don't think it will. They also said that I only should register if I need specific accommodations. I don't think I will need any, except that I will need to bring water with me to class - but I can't imagine the professor would care about that. I also get the sense that, since it is graduate school, if I were to need an extension it really wouldn't be a problem. Part of me thinks that I really don't need to register. For those of you who have been in school while dealing with POTS, what do you recommend? I do worry that if I were to "crash" and have a bad spell, I would have to deal with registering then (requires a lot of doctors' forms, etc) and that maybe it's just better to file everything now, just in case. But then I hate the idea of registering with disability services if I don't really need to.
  14. yes, I have red dots, too! Lots of them. My doctors have always told me they are nothing. But, they started to appear at EXACTLY the same time I started having POTS symptoms. I never made that connection before, but it all started happening around the same time. But, I've had my vitamin levels checked lots of times, and I've never had a C deficiency.
  15. Yes, I have this too, and it has bothered me a lot. Partly because some of my doctors say, "Oh yes, that's just POTS" and some look at me funny when I ask if chest-pain is part of POTS. For me, it does get worse when I stand a lot, or when I am very busy. It does not really go away, although sometimes it is much better than other times.
  16. Hm, no. My results were very different. Were you being tested for POTS or OH? Or something else? My test showed some premature beats and some possible arrythmias that were harmless - my doctor didn't talk much about this so I don't really remember the details. What they were more concerned with was that my daytime heart-rate changed dramatically - from 55 - 145 - depending on what I was doing (when I stood up in the morning to brush my teeth it was 145, for example, when I was sitting watching TV it was 55, etc). Also, my sleeping heart rate was between 38 - 50, and there was a big jump in heart rate between when I was sleeping/lying down and when I first got up in the morning. My doctor said that that large jump between sleeping and first getting up was a "hallmark" of POTS.
  17. The "shooting up fast" nature of my hr has made it harder to get medical attention/diagnosis. When I go from sitting to standing (or, heaven forbid, lying down to standing), my hr shoots up between 30 and 60 bpm immediately. This lasts for about two minutes, and then sometimes it will slow down to a 20-30 bpm increase from the supine rate, and then kind of increase and decreases for the time I stay standing. The initial sharp increase makes me very dizzy and out of breath, but some doctors don't consider this POTS - they ONLY consider POTS an increase of at least 30 bpm after 5 minutes. I do often have a 30+ bpm increase after five minutes, but it oscillates: like, if I start out at 60 bpm, when standing it will immediately go up to about 110 or 120; then at minute 5 it might be 80, and minute 6 might be 90 and then minute 7 might be back down to 80, minute eight back up to 100. If the doctor or nurse takes my reading at the time when it's at 80, they say I'm asymptomatic (because it's only a 20-bpm increase from 60). Honestly, the initial jump from 60 to 110 is way more disorienting, but doctors seem to think this somehow doesn't count as POTS. When I initially developed symptoms, this didn't happen. My hr would simply go from 60 to 120 and stay there. But being on meds seems to have made this up-and-down thing happen that comes on after about 5 minutes of standing.
  18. I teach, but I teach adults, and I teach for two-hour blocks at a time. I find the standing VERY difficult - I am only able to continue teaching because, with adults, there are no discipline issues and very little classroom-management issues, which means I can teach by sitting or by scooting around in a chair with wheels. I don't think I could do this job if I had to teach children and needed to stand more. Also, I work at night - I taught in the mornings for a little while, but it was impossible because my POTS symptoms are so much worse in the morning. Moving around helps - I can stand for longer if I'm walking around the classroom than if I'm just standing still. I make my students write on the board for me, but again, I'm not sure how well that would work if I was teaching children.
  19. Yes. My hr is rarely over 60 when I am sitting or lying down, and at night while I sleep it gets into the low 40's/high 30's. Just like Lance Armstrong. Too bad it's not for the same reasons.
  20. I also have trouble reading out loud, talking a lot, singing, etc. Laughing used to be really hard for me, but I'm glad to say that as my POTS symptoms have gotten a little bit better, so has my laughing endurance.
  21. I have been told that people with adrenal insufficiency and thyroid disease MUST take a natural (not synthetic) form of thyroid hormone. Levoxyl is synthetic, so maybe that's the problem? Also, make sure you are seeing an endo or a nurse praticitioner who specializes in thyroid problems. A lot of PCP's think they can handle thyroid because they think it's "by the numbers," but it's actually very complicated to manage, especially if you have complicating factors like POTS and addison's. jump
  22. I read in an article that Brittany Murphy had Mitral Valve Prolapse, and that although she was aware of the condition it may have contributed to her death. As many of you here know, MVP is often not dangerous, but sometimes if it becomes severe it can be; the article I read said that Brittany's MVP had become more severe without anyone knowing it, and that, combined with pneumonia, caused her to have a heart attack. I have seen MVP grouped together with dysautonomia (I've seen things like, "Dysautonomia, MVP and related disorders" a lot), and I know some doctors consider them related and/or the same disorder. However, MVP is an actual physical problem with the heart, whereas most of us with POTS do not have structural problems. I would imagine a structural problem would be more dangerous than what most of us deal with.
  23. I was on a beta-blocker for a while, and I found it did help control my symptoms somewhat. It was prescribed to me by the cardiologist who diagnosed me. However, when I saw an EP who specialized in POTS, he said a beta blocker is really not an appropriate drug for POTS, especially not as a first-try. His reasoning was that all a BB did was slow down one's heart rate, so one's tachycardias appeared to be less, but it did nothing for the orthostatic CHANGE in heart rate, and was sort of a band-aid treatment that treated a major symptom and did nothing for the cause. That said, lots of people with POTS are on BBs, so obviously not everyone agrees with my doc.
  24. Cat, I think it probably is related somehow. SO MANY of us have various autoimmune problems and Vitamin B problems. In my family, certain people have a constellation of problems: Celiac, autoimmune thyroid, ANA positive, POTS or POTSy symptoms. It seems to all come together in my family. No one, for example, has JUST Celiac and no other problems. No one has thyroid disease and no other problems. I think it all must somehow be related, but I don't know how.
  25. This is fascinating! I had no idea that this wasn't universal until just now. I just took a very extensive synethesia quiz on-line, and scored very highly for synethesia. Then I made some of my friends and family take it and their scores were so different from mine, and indicated no synethesia at all. Who knew! I really had no idea it wasn't universal so associate letters with colors, etc. However, I'm skeptical about a link to POTS, only because I've always had synethesia, and I only developed POTS after an illness. Although curiously, my two friends who scored high on the synethesia quiz also scored high on an autism quiz. We laughed when we all scored so high on autism - none of us are autistic, so we thought the quiz was screwy - but now I think it's kind of weird that all three of us scored high on both.
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