yogini

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.

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...

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

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...

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!

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.

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?

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 your domestic partnership status...or even moving to Massachusetts!

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.

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 long-term disability process. The others are right that your HR people should be able to help you.

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 not be helpful for us. I also think not enough is known about the relationship between dysautonomia and autoimmune conditions. I know some people have a confirmed diagnosis, and many others suspect autoimmune components. But that doesn't apply to everyone. I am pretty sure I don't have anything autoimmune going on.

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.

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.

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!

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 feisty, you could tell her that you are being treated with the latest research and if she can find an article about how therapy can cure POTS, you'd be happy to read it!

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.

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?

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.

If you have POTS/dysautonomia, even though there are ups and downs, it shouldn't be that hard to readings where your HR or BP is off. It should be a sustained increase in HR, so that 10 minutes into standing your HR is still high. Going up and dropping down again is part of "normal". If your HR is usually only going up 5 or 10 points, this does not seem like POTS. If you measure your HR a lot and the change is less than 30 pts only twice, it sounds very much like POTS. You may have good hours or days weeks, or days when your HR goes up 20 bpm instead of 30, but I think you would see the 30 point increase pretty often....or, similarly, a consistent drop in BP if you have NCS. If you're not getting it that often, you may want to press further for your diagnosis. Keep in mind that if you are on meds, that can interfere with the measurements. I probably only get a 10 bpm increase when I am on beta blockers.

Yes, people have negative TTTs but still have POTS b/c symptoms wax and wane. You can do a poor man's tilt - measure your pulse sitting and then standing - or get a heart rate monitor watch. If your pulse generally increases more than 30 points after standing for about 10 mins, you have POTS.

Diuretics usually hurt POTS. However, there are some substances that have diuretic properties, that also have other properties, and those other properties help POTS. Caffeine is a good example. Some people with dysautonomia benefit from caffiene on an ongoing basis. You just have to figure out whether the good aspects outweigh the diuretic effect for you. This is different for each person.

It does sound like your symptoms could be linked. I think low blood volume/improper blood flow can cause migraines and stomach problems - and of course dysautonomia. As for PCOS - it's pretty common for women to have ovarian cysts. Like POTS, it causes all sorts of crazy symptoms. My obgyn told me I have it, but in my case I think all of my symptoms are related to POTS. Not to say that yours are, but there is a lot of overlap between POTS and PCOS symptoms If you saw one of the really good POTS specialists, they might be able to link it for you.

I buy Better than Bouillon organic broth from Whole Foods. It's a paste which comes in a jar and is $6 for 30 servings. It's cheap and also has tons of sodium - something like 750 mg per serving. Whole Foods also has a few types of of organic broth cubes, which I use when I'm away.

Yes, he is open on Saturdays!

I didn't see it on the CDC's site or any reputable British sites - it's only in the tabloids for now. If it's true, it will make major US news soon. There are so many people out there opposed to vaccinations, so we really need a reliable source. I asked my PCP about this when I saw him for something else on Sat. He said real flu season is January/Feb, that kids and elderly would get the shots first and any leftovers would go to us. Since so many people are getting the swine flue shot, there should be more info on side effects in a month or so. So I am in no rush to get the shot...though I will get the regular flu shot I get every year. I may skip the swine flu shot altogether, b/c I am reluctant to try any new med or vaccine. It seems there are so many recalls of new meds. Some of you may remember the heated discussion on the forum re: Gardasil - the HPV vaccine. Many were adamant about its safety, but sure enough the State of TX repealed its law on the vaccine b/c there wasn't enough info yet on safety. I think the danger with the swine flu is more when it doesn't get treated - you can bet I will be going to the dr at the first sign of any symptom!