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Everything posted by yogini

  1. Has anyone ever heard of drinking a tea made of honey and cinnamon for getting health benefits? A friend mentioned it to me and I researched it online and am going to try it. It seems like there isn't much to lose - at least it's something with "normal" ingredients that's not expensive and tastes good. Here is the info: http://countrykitchenpantry.com/2007/04/15...eight-loss-tea/
  2. It's definitely possible to have mild POTS...and, though you can never be sure, your symptoms do sound similar to POTS. Probably a good thing to get tested.
  3. I asked my cardio about H1N1 and he said to wait and see the side effects, availability, etc. I've gotten the same advice from 2 docs in a row. I also keep asking people - my dental hygenist, physical therapist, etc. and noone seems to be getting it...so I am not worrying about it for now!
  4. It's hard to interpret the study from the blurb. First line just means that it's not one of the go to treatments of choice, which makes total sense. First line would be something like BBs or florinef. There are so many risks and expenses with pacers and they aren't appropriate for everyone, so they clearly aren't first line. I think pacers help best with slow and stopping heart rates for NCS (as opposed to POTS). Many who get them don't have a choice - either their heart stopped on the TTT or they had a failed ablation. If you do have a choice to wait, there may be other medical optio
  5. I just went thru something similar when my COBRA ended. In NY none of the big insurance companies even offer to sell insurance to regular folks. I had to set up my own law firm and get it through the city bar association...maybe you belong to a similar professional group? Ehealthinsurance.com is also very helpful. They gave me lots of good info, even though I didn't use them in the end. Don't worry too much about the certificate of continued coverage. They mail that out (under law) the week you coverage ends - mine offered to send me mine early but my new insurance said I can just send it
  6. You can always cancel at Mayo, even at the last minute. I'd get on the waiting list and pursue local drs at the same time. (But I would double check on that, b/c I thought waiting list at Mayo was the same as a rejection?) Anyway, the local docs are the ones that will manage your case in the long run. I would try one of the docs in your area listed on the DINET main page - maybe you can find other people in your area and get a recommendation. You also might have better luck with a electrophysiologist cardio than a neuro (neuros aren't usually helpful unless they specialize in conditions).
  7. Yikes - fainting so much is not good. Is there an electrophysiologist cardio near you? I'd try to find any doc that is willing to prescribe various POTS meds for you until you find one that helps. Maybe you can find other people in your area on DINET who know of drs. And there are other people who faint - maybe you can find out what treatments work for them. How is your BP? Usually people faint b/c their blood pressure is too low. You could try stuff to boost your blood pressure - lots of salt and water and compression hose.
  8. Dr. Low at Mayo recommends propranolol - I think that's why many people use it. I've never understood the difference between beta blockers, selective/non-selective, etc. but I think it and atenolol are most likely to work for POTS. I think people on the forum use lots of different betas tho.
  9. I've had low grade fevers in the afternoon - think I posted about it before. I'm not sure if it's related to POTS - I think it is - but regular people get fluctuations in body temp during the day too. I think a little increase in the afternoon is normal. The temp fluctuations may or may not be related to your increase in symptoms. So hard to know...
  10. I did a search on Align and it contains bifidibacteria, which produce lactic acid... Align contains Bifantis (Bifidobacterium infantis 35624), a patented pure-strain probiotic bacteria that helps naturally balance your digestive system.* http://www.aligngi.com/information-on-Alig...otic-supplement Bifidobacterium longum, a lactic acid-producing intestinal bacterium inhibits colon cancer and modulates the intermediate biomarkers of colon carcinogenesis http://carcin.oxfordjournals.org/cgi/conte...stract/18/4/833
  11. Does Align produce lactic acid? From the hydrogen sulfate post, we need a special probiotic that doesn't produce lactic acid. I have been looking for brands that don't and was thinking of experimenting myself...
  12. You're probably breaking out b/c stopping the pill messes with your hormones...I went on skin meds a few months before I stopped the pill for this reason!
  13. I googled it and the test is relatively cheap - $20. Where do you get it from? And where do you get the particular probiotics. Are there any specific brands to use? Not sure I will do it, but just curious.
  14. That's a bummer. Research hospitals are a mixed bag. Some people have great luck and others get blown off. I never know to recommend whether someone should go. As far as I know, none of them do ongoing care, so in the end you wind up working with some kind of local doctor. Where are you in NY? Did you try any of the docs on the DINET list?
  15. Your story is heartbreaking. If you had a professional job, but can't do it due to your health, you SHOULD qualify for social security. Maybe you should talk to another lawyer. It's a long haul, but worth it. I don't know much about it, but others here have gone through the process and eventually gotten SS. As for jobs, there are flexible ones that you can do online, part time from home - which might be easier for you and maybe even pay you more. Again, you can read through old posts and ask others here on the forum. I was also thinking the same thing someone else posted about changing
  16. Swelling in the legs could be a "just" part of POTS or something else which could be more serious...a side effect of a med (such as florinef--in which case you would want to go off), or congestive heart failure, among other things. No reason to be scared, but I would definitely talk to your dr.
  17. Are you applying for STD insurance or benefits? If you are applying for new insurance with a known condition like POTS, you will most surely be denied. It is like applying for fire insurance when the building is already burning - unfortunately too late. If you already have the insurance and want to collect your salary while you are out sick, I am surprised they would deny you. I was out on STD due to POTS 3 different times for a month each, and all I needed was to fill out a simple form and get a dr's note. Getting paid for short term sick leave is much easier than going through the lo
  18. Let's see...midodrine or worms, what do i want to try first? But, seriously, l'll respond in the same way that I did to the cannabis post. I think it's important to try the treatments commonly used for POTS symptoms. It can be exhausting to try them and they all are somewhat of a gamble, but they are much more likely to help than trying something new. I especially feel that way about treatments that are expensive and not covered by insurance. It's tempting to read about "inventive" cures for other conditions hope they will work for ours. We are also vulnerable to try things that might no
  19. I feel guilty. I was diagnosed in about a month. My PCP referred me to a cardio within the first week. The cardio suspected OH right away, and it was another couple of weeks til the tilt test and got a diagnosis of POTS. Those weeks felt like an eternity...I can only imagine what others have gone through.
  20. I think Melissa is right that it's good to have a dr in the loop. When thinking of treatments, I always lean to meds or supplements commonly used for POTS listed on the DINET site. You are more likely to get results with those. If you have nausea, there are lots of things people have tried; some are meds, and other things are non-medical, such as going gluten and/or dairy free. You can read through old posts here or join a GI support group online.
  21. I'm with rama. I'm not a tattoo person myself, but I don't think there would be any lasting damage to your POTS from getting a tattoo...of course if you have other medical conditions (allergies, etc.) that is something different. But as for POTS, you might feel crappy for a few hrs or a few days, or not. I think flare ups are always a risk when we do anything different from our normal routine. If you put so much thought into it, it sounds like it means a lot to you. If your symptoms were aggravated, it would probably be worth it for you. Go for it!
  22. I think you've gotten some great advice. You are actually lucky that your parents and husband believe you and support you. Many people on this forum don't have any family members that believe them. I know it's your sister and it hurts. But remember that YOU are right and SHE is wrong and doesn't know what she is talking about! I have found that with important people in my life that don't understand, I'm best off not talking about my POTS. If she tries to offer you advice, I would just try to change the subject. I really don't think you need to justify yourself...if you are feeling f
  23. You may want to search the forum for old posts. I don't think you can get it in the US and haven't heard of any trials yet. I think some members from Europe have tried it. It's helped some, but not others.
  24. I think Mayo is a great place to go if you think you have something other than POTS. But be prepared that getting in can be a process - they don't accept everyone and it can be a long wait. You may want to read through some of the old posts on the topic. I would also try to talk to any of the autonomic specialists in your area listed on the Dinet website. You will need them for ongoing care. I would try broth or something super salty instead of so much water. And has your wife tried compression hose or midodrine to bring up her BP?
  25. The crying to me doesn't sound like a side effect of dysautonomia, but I wonder whether it could be a side effect of one of your meds? I get "that feeling in my head" as a side effect of my meds...Maybe you could ask your dr or pharmacist.
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