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yogini

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Everything posted by yogini

  1. Sorry to hear you got this news from the dr. Did he conclude this from the TTT or did he run other tests? I'm really surprised to hear this b/c I've never heard of a "form of POTS" that doesn't respond to medicine. There are some here who cannot tolerate medicines, but they figure that out only after trying lots of different things - there are lots of options other than florinef, midodrine and BBs which your doc may not know about - you can find more info on Dinet page. If your doc is not a POTS specialist, I would try to get a second opinion from someone else.
  2. Thanks, Flop. It's funny that it just came out last week in the US - talk about new! Based upon your description it doesn't seem like it would be helpful. I'm glad I opted for the Paxil. But the literature says. and my dr seemed to think, that the advantage of bystolic is that it has far fewer side effects - fatigue, exercise intolerance, etc. The stats reported in some of the articles online for negative side effects seem low (i..e 5% for fatigue), but they are very scientific and not sure I am interpreting them correctly. I'd still be curious to see where this goes and if any of our friends in Europe has tried it.
  3. I don't believe they cause POTS, but many POTS patients can't tolerate betas at all - often it lowers BP too much, but there are other reaons too. If you're taking a beta blocker, you may want to talk to your dr about switching it for another medicine and see if you feel better. Another option is to take the beta with a medicine that raises BP like florinef or midodrine.
  4. Sophia, I agree with some of your concern. I saw a story on 60 Minutes the other day which was about an anti clotting drug which caused 1000 deaths/month for a couple of years before it was caught, On the other hand, there are some new drugs which have been used safely overseas for a long time before they come tothe US and others which are just a variation of existing drugs - this might make me more willing to try them. I just want to find out the full story - mechanism, history, etc. And if even if we waited, it could mean something for POTS patients down the road, which is good news.
  5. At my dr's appointment today, he mentioned that they have a new patient with the "worst case of POTS ever" and that they have been doing a lot of reading about POTS. (This is a relatively new dr for me and I was like WAIT, doctors actually read for their patients?!? ) But anyway, as an option to Paxil he suggested a new beta blocker called bystolic which supposedly has fewer side effects than the usual beta blockers. I put it off for now, because I'm trying Paxil, but this is something I may try in a few months. I'm wondering whether any of you have heard of it or tried it? I haven't seen it mentioned on the forum before. I do think it's exciting to have the possiblity of this new med, since many of us can't tolerate BBs or have to live with the side effects. He said that the one caveat was that since it was new, insurance might not cover it. I am going to call my insurance company to find out whether it is covered, just out of curiousity. Another concern that I would have is that is is a new drug - unlike good old atenolol which has been around for ages - which is why I wanted to check in here. I did read a bit on the web, but it's mostly PR from the drug companies.
  6. Just wanted to give an update. I had my dr's appointment today and got Paxil - I asked about Lexapro, but they wanted to give me Paxil since that is what has been studied. He wanted to give me 20 mg, but I asked for the lowest dose, so I got 10 mg and my pharmacist says I can cut it in 1/2. I'm feeling optimistic and am excited to try it...but am going to be away for 3 weeks...so I won't be able to start until I get back. I'll post another upate once I've tried it.
  7. Hi Amy, Maybe your body is still adjusting to having the line taken out - I hope that the fainting will calm down with more time. I'm glad you are going to Mayo where they can review your options with you and give you the best care. Get well soon! -Rita
  8. I was going to say that I had this when I first started my BB b/c the dose was too high...
  9. I cross my legs - I do it reflexively. It is recommended by POTS docs and in some of the literature too. I didn't know that it could cause blood clots!
  10. Thanks so much everyone for your responses! I guess I was wondering whether any particular SSRI was more recommended for POTS than others? For example, Mayo Clinic told me that they recommend inderal for POTS but that since I was already on atenolol (luckily their second choice) they would keep me on it. I just wanted try the best option first (if there is one), but it seems that maybe for SSRIs it's more personalized. I did read that Lexapro is a new and improved version of Celexa, so maybe I'll try that first if my doc agrees. I haven't had too much problem tolerating the POTS meds (though I haven't tried many). My biggest problem is actually weaning off the stupid meds. So I'm really, really hoping that the first SSRI works because I'm not sure I have the steam to try more than one...especially since I have managed all this time on just a BB. I've resisted trying SSRIs for 4 years for this reason. At the same time, I'm so TIRED of feeling tired all the time, and the BB just makes it worse. I need to give this a try once and for all to see if it helps - and (in my wildest dreams) maybe it could help me go off atenolol totally. I actually haven't seen my dr in several months, though the past 2 times I saw him, he suggested Paxil. So I hope the offer will be still be open! I'll be going away for a couple of weeks and so I won't be starting any new meds until I get back in mid-March, just to be safe. And Doctorguest thank you for your suggestion - I'll definitely start at 1/4 of the adult dose - hopefully that'll help with side effects and weaning off, if need be.
  11. I have been managing my POTS on beta blockers all these years, but I always seem to be battling low BP and low energy. I am seriously thinking of giving an SSRI a try. My docs have suggested it in the past, and I have put it off. In trying option, I want to make sure I make an informed decision. A couple of docs have suggested Paxil for me, but I know that a lot of you take Lexapro or Celexa. Do any of you know what the differences are between these drugs? Also what is is the lowest possible dose I could take? I'd love to get this info in hand for my appointment on Mon or even have a website where I can find this info. Thanks!
  12. Hi, Yes I have this problem . My throat is a little tight but not too tight - I'm not sure it's the same as you, b/c I don't get that choking feeling or anything. I do feel pressure and sometimes pain. Can be scary, b/c it's near the heart area and it seems to flare up whenever my POTS symptoms are acting up. I take Gas-X and it helps some, but mostly I just live with it. -Rita
  13. Dating is really hard for anyone - I see my healthy friends struggling - but it is extra hard with a chronic illness. It takes a lot of energy to meet the right person and in the meanwhile there may not be much reward....which makes me feel like I'd be better off exercising or spending time with friends. But I do want to find a relationship and will slowly keep at it as best I can. I've actually been on a lot of dates since having POTS and dated 3 or 4 times for longer periods - a few weeks or a couple of months. I usually don't mention POTS unless things go beyond a first date. I don't think it's worth the effort of gettting into such a personal topic unless things look like they're moving forward - and honestly, there are probably things the guy is not telling you up front either. When I do talk about it, it has usually just come up in conversation and it doesn't seem to have affected things - but I'm not sure how it would affect things in a serious relationship. I sometimes wish I could just meet a guy with a minor chronic illness - at least he would understand. I think Kit hit the nail on the head - psychologically it's hard. I feel like I'm not a lot of fun since there are many limitations on what I can do, and wonder why anyone would want to put up with that. But I'm glad to have this topic - it has given me a different way of thinking about things.
  14. Tearose, I'm SO glad it's helping. I actually did a project on caffeine in the 5th grade. I cut it out b/c I remembered all of the side effects - insomnia, tachycardia, arrythmia - it seemed like it might not work well with someone who has POTS. Not to say that it is true for all, but still worth experimenting with for many of us. I wish our docs would sit down with us and look at things we do, eat, etc. in our lives that might unintentionally be affecting how we feel, but we are sort of left on our own to do this. It's great to have a forum where can get different ideas on what help others.
  15. Hi, I am surprised that he is an autonomic specialist and doesn't know of the potential link between EDS and POTS. Sorry, but that seems to be pretty basic info! I live in NY and I've seen a few docs listed on various websites - and for the most part they seem to have limited knowledge just as you describe. Sometimes that did me more harm than good! I think they can be OK, you just have to do your own research and/or bounce things off people on the forum if things don't sound right. I don't know much about the meds that you mentioned, other than that I can't personally handle Sudafed (for colds). I don't know if you've tried the more common POTS meds such as florinef, BBs, SSRIs etc, but they are usually a good place to start and can also help with energy.
  16. I liked the show and I'm really glad they did a story on dysautonomia. I think maybe they tried to make it more "entertaining" by focusing on the ordeal of getting a diagosis and on things like fainting with a butcher knife and the near head on collision...which they kept showing as a teaser. I wish they'd have instead focused on symptoms and how POTS actually affects her life (and patients' lives) pre and post diagnosis. Even a couple more minutes on this would've helped to better clarify things for friends/family and also to those out there who are undiagnosed.
  17. There are articles (written by Dr. Grubb) showing that biofeedback does help with dysautonomia. I looked into it a couple of years ago, but my insurance didn't cover it. I am also on beta blockers, which affect HR and BP and limit the effectiveness of biofeedback. Even so, I'd gladly go if it were covered - I may get around to paying out of pocket for it someday. For now, I have the Resperate machine, which helps you to learn to breath more deeply and slowly over time. I also have Dr. Weil's breathing CD, which has various yoga-like breathing techniques. The effects are somewhat subtle, but I have found both of these really useful - they help with my symptoms and with relaxation - one of the few things that helps w/o any bad side effects.
  18. I won't lie - at least for me they are a pain to deal with and can be uncomfortable at times. I go through phases where I wear them for a while and then get tired and give up. But I'm personally VERY glad to have them as a tool when needed. I remember a discussion on another forum where many people shared the same view as your doc. And he may not be wrong that people give up, but why would he be against trying them? It seems like there is a lot to gain and not much to lose, other than a few bucks. On the other hand, if your doc is helpful overall, I could see why you wouldn't want to push things...it's hard to find anyone decent who knows about autonomic stuff.
  19. Hi Tea, I had written you a longer response, but lost it! I think there are varying opinions on caffeine. I experimented with cutting it out completely (as recommended by my PCP to improve sleep). I then felt better sleepwise and POTS-wise. I still have it sometimes if it happens to be around and find that my worst days are often those on which I have caffeine - sometimes, but not always. So I only have it once in a blue moon these days. You may want to try going caffeine free for a week or two to see what happens...it does help some people, so you can see whether cutting it out helps or makes you worse...
  20. Rachel, that's great news. I hope that it helps - let us know how it goes!
  21. 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
  22. 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.
  23. 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.
  24. 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.
  25. 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
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