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Everything posted by Elfie

  1. I haven't been around in awhile. I've been diagnosed for 4 years and have had symptoms related to postural hypotension and tachycardia for 6 years and have gotten to the point where I'm limited but not ruled by my illness with the help of a good cardio and medications+lifestyle changes. I had an opportunity to do something that I was forced to skip due to severe symptoms when I was first diagnosed and decided to take it on, even though it was pretty ambitious for me. On top of that, part of the way through that project I was offered and took a job. I was working a ton of hours, standing a lot,
  2. I'd be very careful with EDS and ANY chiro as well-- esp. one that isn't very experienced with it. Also, not everyone needs supplements and some can be harmful--- I prefer to work with docs and good nutritionists from that angle. It doesn't hurt to try gluten and allergen free diets, but it may not work for you. Mine actually made my symptoms worse.
  3. I occasionally get those really powerful cramps as well, and it usually is because my electrolytes are out of whack--- I have had the experience of one dropping me. It is really embarrassing, sorry you had that happen! I try to keep my workplaces from knowing about conditions as I find it may be detrimental to my career and it has gone ok, since I'm not a frequent fainter or one who crashes unexpectedly (I do that way more at home)-- but it would really **** to have people fussing over you after a faint.
  4. It is hard--- I actually think it is hard to have a POTS diagnosis as well, especially if you haven't had advanced autonomic testing to try and determine what is causing the POTS. In my case I was 18 when I came down with POTS. However, I don't have the juvenile onset version that can be related to rapid hormone changes and growth. I was originally told "best guess" that mine was post-viral, although the circumstances around it are suspect. Either way, because of that docs I see are always making assumptions about the seriousness of my illness and about the measures and treatments worth trying
  5. Sounds like there is a lot of support for just doing what you have to do, which is how I normally go about my business. I'm not concerned about the ride--- I'm rarely motion sick as an adult-- I feel fairly decent in the car, especially since I can make myself comfortable in the vehicle if I'm not driving. However, stops or no stops I'm still worried about the crash afterwards.
  6. Issie- thanks, I'm trying to make that "should I" decision now. Diamond-- motion mate is a homeopathic remedy for motion sickness. I'm sure Issie will be back to tell you more. I'm really unsure about this trip, as I too think it would be easier to meet his family when they come visit, but he'd still like to take me. I'm afraid that I'll make a bad impression or divert plans. Mainly I'm concerned because it seems like a very busy time for the family. Also, I'm not sure exactly if there will be a quiet place to lay down and rest since the guest room sounds like it doubles as a lounge, and with
  7. Thanks Diamond-- I'm not that worried about the actual traveling since I have done long 5-7 hour trips before (and he will drive, and probably stop often for his own needs every hour or two), but feeling crummy for days afterwards once we arrive. I'm worried about potentially dealing with a migraine the next day, or just dizziness and fatigue from a tiring journey. I dare say meeting his mother and sisters will probably be a bit exciting and stressful, as well. On top of that, it has been several years (prior to me beginning treatment) since I've dealt with heat like that. Last time I was some
  8. I haven't traveled for pleasure since my onset. Any traveling has been to medical appointments or to see close family or attend funerals. Travel is pretty hard on my system, but obviously when I'm just crashing with family or going to the doc that doesn't matter much. However, I've recently been invited on a road trip with the man I've been seeing. He is from Tucson, AZ and is traveling back for a family event and would like me to come with him. I'm flattered that he'd like to introduce me to his family. I also wouldn't mind "getting away" for a week after a long hard winter. The issues lie in
  9. When I travel I tend to be both dizzy and sleepy-- however, I relate it more to what I'm doing stressing my system, which lowers my BP a bit and THAT makes me both dizzy and sleepy. Sometimes laying down and relaxing is enough to reduce the stress on my system and I will actually feel better after a nap, despite sleep lowering BP more.
  10. I live in Colorado, also at a higher elevation than Denver. I grew up in CO at 9,200 feet and spent much of my childhood above 10,000ft. I was living out of state at a much lower elevation when I got POTS. I can't comment on the weather since where I was living also had lots of sun. I moved back about two years ago. It did take me about 4-5 months to get used to the altitude again with my POTS, but once I re-adjusted I don't have more symptoms than before. I do still have a harder time going up to visit family that live above 9-10 feet--- I tend to be more fatigued, a bit more dizzy/POTSy, and
  11. Firewatcher-- I've experienced similar to what it seems like your describing. I'm still stronger than the average woman, but instead of gradually fatiguing (normal, pre-POTS), my muscles go and then just won't fire to do another rep. I also plateau big time when it comes to lifting weights, ect---- where I gradually increase strength and then randomly it will stop and I just can't do any more--- almost like I have a muscle I've over-worked or fatigued . . . .but even with rest it doesn't recover. I also have times (when I'm feeling less potsy, usually) where I can lift significant amounts of w
  12. If you work out at a gym you could find a nice mat to lay down on and "stretch" for 15 minutes! LOL Or lay with your hands in a prayer position on your chest and say your doing yoga!
  13. Good to know-- my nuero used to work at Mayo back in the dark ages when they were first solidifying an autonomic lab and coining POTS. She wants me to get further testing, but doesn't have the facilities or staff to do it herself. I'm trying to decide between the mayo in rochester and Vernino in TX.
  14. Mine is usually related to a BP drop-- even if not low, my bp usually rises (at least in my brain) when I work out and get blood pumping and the relative drop from slowing down can cause symptoms, and sometimes it just tanks. Also, sometimes I find I'm working out on adrenaline pushing myself, and crash afterwards, even if I'm not working out too hard. I sometimes have to sit in the car or a cool part of the locker room and "chill out" before I'm safe to drive. For me, I've gotten better over time at avoiding pushing too hard, which seems to help.
  15. I took it after I was first diagnosed with POTS (I also have some tremors and migraines- the migraines I get from my dad). I didn't have bad side effects-- a slight appetite suppression, which was ok for me as I don't deal with constant nausea and still got plenty of healthy food and a bit of fatigue and "weirdness" but nothing serious and I would have gotten used to it. It just wasn't effective enough for me to stay on, since I deal pretty well with my migraines using caffeine.
  16. Hey guys, Have a referral to either Dr. Vernino in Dallas or the Mayo in Rochester. Because of where I live I'm tempted to go to Dallas. I have a local neuro that used to work in the autonomic testing labs at the Mayo back in the early days who has kept up with a lot of what is going on in POTS treatment and she is willing to treat me, but needs a battery of autonomic testing. If I went to Dallas, it would be nice because it is close enough I could return if needed. However, I'd really like to hear more about forum members' experiences. I'd be really grateful. Feel free to PM me instead!
  17. I have them on my toes, for me they are new within the last 6 months or so. Just POTS here, but I've been pretty stressed in the last 6 months.
  18. I appreciate the advice-- I used to be a runner, but I struggle with it now. I'm in pretty good shape cardiovascular-wise (I recently out-beasted a friend that is a regular runner and has to pass stringent physical fitness tests at work, and I felt good doing it), but if I don't find the perfect pace and keep my heart rate in just the right range for that particular day, my BP tanks and each day is different. Too slow/not doing enough uphills and it'll tank-- too fast or too hot or too long and my BP will tank. Also, I find the logistics difficult because if I've been running or hiking hard,
  19. I hate to be the naysayer, but I'm not sure it works for everyone. Over the course of 2 years I built up from swimming, water exercise, and recumbent biking to vigorous hiking (constant climbing), weightlifting, and some jogging. Even after 7 months of the vigorous activity 3-5 days a week, with decent activity levels on the days off, I still had bad POTS symptoms. Sure, I was more fit, but it didn't impact my dizziness or how I felt or improved my functioning when standing (dizziness, fatigue, chest pain/SOB, and cognitive/balance-type issues are my worst symptoms, all related to low bp). I w
  20. As mentioned in the topic segment, I am probably going bad bad places just for thinking about this. However, I figured that if there ever was a place where people might understand, or at least kindly set me straight, it would be here. We've been very lucky in my family and group of friends to have very few people deal with serious health issues. I've had family with orthopedic problems (bad hips, bad backs, old injuries-- not to say that these can't be painful and limiting) but only a handful of people with serious medical problems otherwise. For the most part those that have/had issues were
  21. I'm one of the rare people that are genuinely allergic to it. It gave me serious hives and even some mouth swelling/tingling, but was a gradual thing over 10+ days. At first I thought the first few hives were bug bites.
  22. I live somewhere cold and am painfully cold (similar to the first stages of frostbite and hypothermia) all the time during the winter. My body often doesn't create enough heat for me to trap it and use it to warm up (especially extremities) however, I find putting heat from other sources painful (heating pad, electric blanket, even warm shower). I'm always sticking my "ice hands of death" on close friends and family members who run hot (I give a lot of massages too because I get to borrow body heat and the rubbing does eventually warm my hands up). AC can also leave me shivering, especially af
  23. Thank you --- it sounds like he and I need to have another talk. I tried to be very clear to him from the very beginning about what I expected of him and how POTS fuels some of the things I need from him (and therefore they are non-negotiable-- like not being able to drive home late at night safely), but it is possible he misunderstood me. I do feel badly because I do think he is a very nice person, but I do think it is possible that he has never been in a relationship with someone that is quite as even keel as I am and because when bad things have happened between us I haven't been OTO upset
  24. Basically I was very clear about my needs from the very beginning. We've been dating for long enough to be attached to each other and considering the future, but not to the "partner" stage. For the most part the relationship has been on an even keel, with us both doing about half of the "work" of the relationship. Recently he hasn't been treating me "badly" persay, but he has become increasingly selfish, unwilling to put out effort, and inconsiderate of my needs. He says he has been very stressed. I've tried to be supportive and been willing to pick up the slack in our relationship (willing to
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