yogini

What a nice story about someone with POTS!

Right after I got sick and complained of extreme /lightheadedness/dizziness, my primary doc referred me to a cardiologist. I cant remember whether if it was that cardio or a distant cousin that is a cardio who first suggested orthostatic hypotension as a diagnosis. From there I had a TTT and was diagnosed with POTS.

I'll bet betas are contributing to your fatigue. What time of day are you taking them? Which beta and what is ur dose? What is ur BP? What is ur HR on betas? Sorry for all the Qs, but the way to figure out what is wrong is to figure out what is going on with ur body. It may help to talk to ur doc to see if you can switch to taking them at night and/or switching betas. They were great for me for tachy and I still take as needed, but For the most part my HR is managed with Paxil. No fatigue as a side effect. I would recommend Compression hose and salt - they can help keep ur BP up. Good luck!

So funny! We don't understand, our docs don't either... The blind leading the blind!

Love, love love the reply, thanks! Which reminds me I need to send a thank you email to the Pittsburgh journalist for writing such an accurate article. Again I think most of us regulars here are informed/persevere but I have been on the forum many years. I have seen plenty of people who don't meet this description at all. There are probably many people that don't even check the Internet in the first place. I really dont think POTS is connected to any personality type. I think it is important to distinguish it as such - if it is related to emotions/behavior, it gives docs a reason to call it psychological.

This topic has come up before and is controversial - see link below, for example. I am an A type peronality and can see that many of the regulars here probably are - we are the type of proactive people that do tons of research, are extremely knowledgeable and want to help ourselves. However, other types of posters pop up often enough too. I have seen this mentioned in literature/articles , but not really sure the description fits.

What is your BP? Propel may not be enough sodium to increase your BP. Do you have sinus tachycardia or SVT? POTS is sinus tachycardia, but usually sinus oes not get that high. I hope you find good drs soon. Maybe try to find others on the forum that live in your area that can give you a recommendation.

I don't think I have anything else other than POTS. So I am not sure I agree. I guess time will tell when we see what research uncovers.

I would get tested for both gastroparesis and celiac, which are very common for people with POTS. A lot of people benefit from going lactose and/or gluten free. Probiotics can help too. I have neither, but I am also bloated, constantly passing gas. I also get stopped up esp when i eat a lot of beans/fiber/etc, exactly like sue describes, except that I do pass gas even more than normal. If that happens, I eat very bland foods like jello, bread, noodles, rice and chicken soup for a few days until I am back to normal. I am having this now and it is no fun!

Agreed not a cure, but the most important part of treatment according o more than one doc in the article. People here often debate whether exercise helps at all...

Awesome! Interesting that several major Drs were mentioned and the discussion re Dr Levine is followed by a patient who wasnt cured by his protocol. It is interesting that every single Dr thinks that exercise is the most important part of treatment. The topic comes up so often on the forum, and I am thrilled to finally see a direct answer. I guess there isn't much room to debate this anymore!

The way it is written about in the articles, it is as if it is caused by deconiditioning and cured by exercise. He hasn't made any effort to correct despite pleadings, but I agree with you, what he calls it is secondary if it works.

Any med that works hold theoretically help with all symptoms and help you have more energy and better enable to work - if your bOdy is receptive and you have the right med. Right now I take Paxil, but in the past BBs, Florinef and midodrine have all helped with my energy level.

A lot of people have these problems, but many don't. I think the tests are not needed for all, but need to be determined based upon symptoms. It would be nice, tho, to have acknowledgement from drs that some of these conditions are related and to have drs test for them rather than having us figure it out for ourselves. It is ridiculous, for example, when someone learns several years after being diagnosed with POTS that they have EDS. Dr should check for that right away.

By the way, I don't like the taste of broth but it's cheap, low cal, tolerable and gets the trick done quickly. I like the fact that it's organic - most other salty foods like V8 have MSG.

I am the opposite. I usually slouch/hunch when I am not paying attention. I think my poor posture and weak abs cause abdominal pooling (I have pooling in my legs anyway not related to posture). Since doing yoga I have become more aware and correct my posture when I remember. When i enage my abs and pull back my shoulders, I can feel a difference. It is supposed to help open up your lungs and back and improve circulation. It's cool that your body figured this out instinctively.

They are high in sodium too if you buy the canned kind. I roast them with olive oil til they r crunchy and add a little salt. Yum!

Organic chicken broth.

I worked out at the gym 5x / week so definitely wasn't out of shape. However, I am and always have been uncoordinated and terrible at sports. I am probably at my most athletic now, since taking up yoga after pots.

I am not sure how good Vanderbilt is for ongoing care. They do testing, but I am not sure how many people go there for regular care. Not sure about POTS docs in Hawaii.

Hawaii would be too hot for me, I think. Nice that you have a choice, though.

Exercise is clearly helPful to many POTS patients. The problem with Dr Levine is that he generalizes and does nOt acknowledge how hard is to exercise and that some people simply can't. He implies that we are all deconditioned and uses the term "Grinch Syndrome" which many find offensive. Frankly his research on exercise is not all that groundbreaking. We all know that many of us who can exercise have benefitted a lot. I am not able to push myself to getting really sick to exercise so I totally understand why some people can't exercise at all.

Most people with POTS are not hypovolemic. Some are -the only way to know for sure is to get a blood volume test. I've never had the test, but I'd bet I am not hypovolemic. I'm not hyper POTS either. But I did feel MUCH better from saline the one time I had it. For whatever reason (I don't fully understand the mechanism), enough blood does not go to my head, and saline helped with that.

That is awesome he is feeling well enough to join the Wiggles. I'll bet he wants to keep his medical treatment private for multiple reasons. I hope he continues to be a spokesperson for dysautonomia!

Cold extremities are irrelevant, by the way. The fact that you had 30bpm+ pre Lexapro means you have POTS