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Everything posted by yogini

  1. Melissa, Thanks for taking the time and energy to keep us up to date. I hope that your hospital stay goes as smoothly and comfortably as possible. I too am at a loss for words, so I'll just say that I'm sending you lots of good thoughts and some Harry Potter dust for good measure... -Rita
  2. The best way to get insurance is through an organization such as an employer or school. If that isn't an option, I would call an insurance broker that deals with several companies. Ehealthinsurance.com is pretty helpful and knowledgeable about the different state laws. Your state insurance dept is also a good source of info and/or referrals.
  3. Flop, Curves is just a gym for women. I exercise frequently, but had to work up to weights and still have trouble with them. I also need to move at my own pace and there is no way I could move from machine to machine. the getting up and sitting down part might be more tiring than the workout. There are lot of great old posts about exercising. Most people do well with gentle exercise, especially things lying flat, like swimming and pilates. I hope you find something that works for you.
  4. I can tolerate caffeine most of the time, but I noticed some things on some days - difficulty exercising, bad tachy episodes and esp trouble sleeping. I tried cutting it out and definitely feel much better without it. But I think some dysautonomia patients benefit from it, especially those both low HR and low BP. One of the things you have to play around with to see what works for you.
  5. Doctorguest, Thank you! It's sad to say, but I'd be thrilled to see POTS/dysautonomia receive even as much recognition as CFS or MS. At least most people have heard of them, and that is a start! -Rita
  6. Yay! My DVR doesn't allow me to record more than a week in advance, so hopefully I'll remember. I wonder if there is a tech savvy person among us who knows how to post the video so that everyone could have access...I know people do this all the time on You Tube, don't ask me how.... I've watched the show once or twice. IMHO, they tend to overdramatize things sometimes, so I hope they do a good job and are factually correct!
  7. Tea, I do take it in the am...otherwise I'd probably find myself vacuuming in the middle of the night! Good luck in trying CoQ10. PM me and let me know how it goes...
  8. Interesting. I've noticed that I had to go to the bathroom less frequently when I was on higher doses of atenolol, so I've wondered whether excess adrenaline had something to do with it. And like Kristen I've had the bathroom problem long before POTS...really all of my life. I used to drink a lot of caffeine, so that might have been part of it too...but I don't anymore and still have to pee all the time! Anyway, it is mostly just annoying and embarassing, but I hope they continue to study this issue!
  9. Were you taking florinef or other meds when you had the tilt table test? If so, that would have skewed your results....(your results might have been stronger without meds). If that is the case, the meds you are taking may be working and you might want to re-consider going off of them. I take atenolol. I do find some side effects - fatigue, weight gain, exercise intolerance. But for me well worth it.
  10. Sorry for the confusion - 1/1 means Jan 1, so it's been 10 days, pretty close to the 2 week mark. I'm planning to slightly reduce my beta blocker this weekend, so after that it could be hard to tell what is attributable to the CoQ10. Lucily, I haven't noticed any negative side effects at all. Normally I used to feel kind of "blah" for much of the day - like sleeping or vegging out on the couch all day. I would get bursts of energy to do things, but then I would crash or at least have to rest. With CoQ10 my energy level feels a bit more constant - I do feel "blah" sometimes, but overall,
  11. Hi Ernie, I have mild IBS. I think the meds you'd be given would depend upon the symptoms you're having. My main symptoms are gas and reflux and I've tried various OTC and prescription antacids, as well as simethicone for gas. If you're having diarrhea, etc, I'm sure there are many other meds. There are also dietary changes you can try, which are probably better to try first before going to meds. In terms of foods that cause gas and bloating (broccoli, beans, etc.), I think there is good info on WebMD. Plain, bland starchy foods like potatoes and rice are really easy to digest and settlin
  12. Hi everyone, I started taking a low dose (50 mg) of CoQ10 on 1/1. I never expect too much from supplements, but I'm actually feeling more alert and feel less need to take a nap in the afternoons - I was taking one almost every day before. I especially notice a lot more energy in the evenings. I've been making a lot of other positive changes which have slowly been helping me to feel better, but think the extra energy is from the CoQ10 b/c I started to feel the changes right after taking it...so I'm pretty excited! Right now I'm going to stay at the low dose and see how things go. I'm mak
  13. I think I saw 40-50 somewhere, but don't remember where (maybe one of the websites would have them or know). If not, maybe you could get them custom made. Another option would be a compression girdle. I think my worst pooling is in my abdomen, but unfortunately I can't tolerate anything tight on my stomach!
  14. I wasn't really one to get sick much before getting POTS, though I always got a few colds every season. I didn't get any colds at all for the first couple of years I had POTS. The last couple of years I had two colds, which were thankfully short-lived. I'm not sure there is an autoimmune component to my POTS - I think my "good luck" is from being extra careful in taking care of myself - vitamins, flu-shot, hydration, rest, etc....not to mention being a recluse (not by choice)!
  15. The chills and goosebumps don't bother me that much. I just get a strange feeling in my head - and after the midodrine wears off I also feel very weak and strange. I'm able to function OK w/ just beta blockers, but use midodrine for special occasions and emergencies.
  16. Theoretically, your increase sounds fine because the max dosing for midodrine is much more. But if you're so sensitive that you can't even take 3.75 at once, I'm not sure how you would react to spreading it out over time. I'd check with a dr or pharmacist (these can be helpful if oyu can't reach your doc)...but they might not know either. It might be worth experimenting with when you have some down time. I think slightly high BP for a couple of hrs is not so bad - it's really sustained high BP over long periods of time which causes the damage. And if it works, it could be a great tool for
  17. There is a separate version of Gatorade with twice the sodium - Gatorade Endurance, I think. It isn't low sugar and I think it's mostly available in sporting goods stores. I'm totally trying to cut out sugar substitutes, so I don't think I'll be trying G2 anytime soon. It's too bad they can't come out with a decent tasting low sugar, high salt drink. I guess there's no way to make all that sodium taste good without the sugar!
  18. Julie, Is the manual therapy just for GI problems or also for POTS in general? Is it covered by insurance? Thanks, Rita
  19. Funny, I went to Haleakala in 1995 and didn't have any problem. That was a decade before I developed severe POTS, though I often wonder whether I had it before my symptoms became severe...but maybe I didn't. I have 2 close friends (non-POTS) who have separately gotten altitude sickness when they went skiing - they had vomiting, headaches, fainting. Since my onset of POTS, I've avoid places of altitude just to be safe. It sounds like you made it through with some symptoms - but probably worth it!
  20. FYI, I asked my cardio about this a while ago and he said that he has trouble getting cardiac rehab approved even for some of his serious patients like stroke victims. And I actually have pretty decent insurance. I am not one of the worst cases of POTS, but had a lot of trouble exercising, esp at first, and could've benefitted from some guidance. Just wanted to mention that ins coverage might be an issue...though hopefully not for you!
  21. What helped me is to start really slow and ease into things. And to exercise regularly. Exercises where I am lying down (swimming, pilates) or sitting (recumbent bike) are the easiest, along with walking since it is slow. I worked with personal trainers for a while (meaning to get back into it) and that was great b/c they gently pushed me. Cardio was impossible at first and weights were hard too. I had to work up to both of them and still can't do them on my off days. Right now I'm really into yoga and it is helping a ton, but I couldn't have done it if I hadn't tried all the other stuff
  22. I saw this movie in the theater. I didn't post about it because I thought it might stir up things a bit. I think the movie is very worthwhile seeing. The point of the film is that the US healthcare system is grossly inadequate in many ways. I think most of us would be hard pressed to disagree with this. In making his point, Moore does take some liberties and in some cases exaggerates, as he does in some of his other films, but it does not mean that he doesn't raise some valid points. I'm currently on a leave of absence from my job - I actually quit my job and was thankfully offered a lea
  23. I think we all try to be really careful not to push ourselves too hard, but inevitably it sometimes happens. It's like some of us are on a tightrope and can manage to survive as long as we stay within our limitations. But it is inevitable that we will bobble or even fall off sometimes. The problem is not really us, but the fact that we are stuck walking on the stupid tighrope in the first place due to POTS. I think any level of POTS is seriously debilitating. Like you, I'm probably among the more active people on the forum and I feel grateful for that. Yet I can't do as much in one day a
  24. Compression hose work by squeezing your legs to prevent pooling and increase/maintain BP. I didn't even know that Walmart carried the hose. What really matters is the brand - I wouldn't be so sure about a generic brand from Walmart but if you got a brand like Jobst it should be fine. Many of us here shop online at Brightlife Direct or Ames Walker. (You don't need a prescription to get compression hose from these places - you may want to consult with your dr anyway to determine the strength of the compression, brand, etc. ) I've gotten pairs from Brightlife - they have a tape measure that you
  25. Haven't taken in a few years, but didn't have to refrigerate mine. If it looks different than what you're used to, I would double check with them to make sure they gave you the right med!
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