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POTS and weight loss


India
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:( Hi, I'm so glad to have found this forum. I'm 37 and was finally diagnosed with POTS last Thursday after a ten year struggle to get a definitive diagnosis. I am convinced that I have suffered from it a lot longer--I vividly remember near syncopal episodes in interminably long choir performances in school! Mild symptoms--episodes of tachycardia--started in 1994. For years they were ascribed to "stress" and the usual "female problems." I then began to have the occasional fainting episodes and more commonly near fainting episodes on standing. I was prescribed beta-blockers for a while after several holter monitor tests. But the attitude of my doctors was generally condescending and their unanimous opinion was that I was "highly strung."

Over the years I really began to doubt my sanity and would have bought into my doctor's "diagnosis" had it not been for my husband, who, knowing me perhaps better than I knew myself, was convinced that there was something physically wrong and that I was certainly not the sort of person to succumb to some phantom illness. I was also fortunate enough to relocate across the country to a new job and to find a new doctor about a year ago who had experience with POTS. Thus, after many, many tests--including an electro-physiological study of my heart (lots of fun!)--I finally had a tilt test last week. After about 15 minutes my heart rate shot up to 139 and my bp shot down to 50/42, I had the sweats, the tremors, all the usual stuff. And there I was, with finally a diagnosis and prescription for midodrine. I was so relieved that I burst into tears in the exam room! I wasn't crazy afterall.

My question is this. Over the past year, my symptoms had gotten much worse. This I initially associated with living in a much warmer climate--my symptoms had always seemed to get worse in summer where I lived before. And where I live now it is really summer all year round. But, I am now also wondering if the worsening of my symptoms has to do with my weightloss. Trying to be pro-active before I had been diagnosed. I decided to embark on a fitness program and lost 45lbs. The weight loss was not rapid--it occurred over a period of seven to eight months. But I am wondering if this contributed to my symptoms and whether my body might "readjust" to the new svelte, but more syncopal me!

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India, welcome to the forum. I don't knwo whether to say congrats on getting a diagnosis or sorry that you have joined our ranks. Either way, welcome.

You initially posted this in the info & announcements section--so I've moved your post to the general discussion where you're now more likely to get responses to your questions.

Not sure if the weight loss caused your changes in your autonomic functioning--I'd lost quite a bit of weight a few years back and felt pretty darned good then. Perhaps others here will have more input for you.

Nina

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Hi India,

Welcome to the forum. I know you will meet many here who have problems similar to you.

I had weight loss as a symptom of POTS, not something that exacerbated it. So I can't really answer your question. If your weight loss was gradual, it seems that that shouldn't affect the autonomic stuff too much, unless you lost too much weight. 45 pounds in 7-8 months is just a little fast ... I think the medical recommendation is to lose no more than a pound a week, or five in a month. It is possible that the autonomic stuff contributed to your ability to lose weight quickly, too.

I don't know what your weight situation is, but perhaps you should try to regain a few pounds and see if you feel any better. Of course, I wouldn't do this if you were told to lose weight.

Anyway, welcome!

Amy

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:) Welcome,

I am so sorry to say, since the beach is just a large piece of heaven to me, that the heat may be causing your problems. Since we aaren't able to take hot shoers, saunas, whirlpool, etc. Our body can't cool itself. Beaches with breezes are ok and I have found a few. Otherwise there are articles of clothing that are cooling agents. Vests like police, fire wear. Hats, love mine, mayo has some in their store website. Always keep water. When I lived in New Mexico and taught PE mmostly outside I froze bottles of water to take with me so I would always have water. You now know I assume that singing is not good for us. Makes many pass out because of the exertion. Welcome and I hope that things can be adapted for you to feel better. And tell your husband to goo. If ir werent for mine, I would still be passing out in parking lots in tons where no one knew me!!! He believed

Miriam

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Guest tearose

Hi India welcome to the bunch! We are quite a collection! :o:):huh:

You have waited a long time for the diagnosis and I understand the frustration you must have felt over those loooong ten years! The good news is that you have a diagnosis. The ongoing challenge is that there are many types of dysautonomia and it will take more time and patients for you to learn exactly what will work for you and what triggers you and so on...

You may in fact find that your body eventually adjusts to the weight loss with the midodrine. You may add something else to your treatment plan; maybe adding something like compression hose...

We are all so different.

I too have lost weight when symptomatic but that may be because my gut can shut down when I'm sick. Some people gain weight, some have trouble with maintaining. There are medications that can cause digestive side effects. Some of us developed problems with our gallbladder after living with pots for a long time. Some people respond so well to midodrine that we don't hear from them anymore.

We like to think of it as a journey. There will be side trips, changes in directions and pit stops...

Please keep living your life to the fullest and keep searching for answers

again, welcome, tearose

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Hi India. The others have given you good thoughts. Everyone has a different experience, but I get the sense that being either too underweight or too overweight is not helpful when you have POTS. I just wanted to add that I lost about 10 lbs over the course of a year before I got POTS. This wasn't rapid at all, but I went to the doctor because I was losing weight without trying which had never happened to me before in my life! I think being underweight made me more vulnerable to POTS, although my POTS was probably caused by a virus. Anyway, I have since gained it all back and then some, and I think the extra weight helps me. I think it has to do with increased blood volume for me due to all the water and salt I am having. And POTS symptoms can definitely get worse from any change in the body. I think it just takes our bodies longer to adjust than the normal person.

Glad you found the board.

-Rita

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