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I'm Nancy, I haven't been on here too long but I've had POTS for 15 months now.

I Have a good internist who is working as my PCP and doing a great job. I was on a ton of meds and we found a combination that made my symptoms tolerable. I was doing alright for about 3 months having many more good days than bad and then about 3 weeks ago it got really bad again. I haven't changed anything, I'm not more stressed, I can't figure out anything to cause this. Does it just happen? I can hardly function and my food intolerance is almost unbearable. I've been in and out of the hospital and that doesn't even seem to help much. Any ideas? Advice? I'm open to anything about now. Thanks.

~nancy

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I too have bouts where I have LOTS of bad days close together and then a time that seems better. It is frustrating and hard for others to understand. That is the hard part to live with...the ups and downs.

I don't have any wise advise, just hugs and good wishes for you...feel better.

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Hi Nancy,

Welcome to the forumn. Sorry you are having a rough time of it. I've had POTS for more years (probably 20+) but was diagnosed formally with my second TTT in 2003. The first TTT was positive several years before that as well, but they just called it idopathic orthostatic hypotension back then and shook their heads and washed their hands of it. During the last many years, I have had times when I was more or less functional and then times I would crash -- for what I still can not determine a cause.

For me the onset of the crash would be an increase in symptoms accompanied by rapid weight loss. When I dropped 15 pounds in two weeks this past spring, I knew I was headed for a big fall. You mention food intolerance. How does this manifest for you? What are the symptoms like?

Hang in there, hun. We're all pulln' for each other here and you among people who care.

~EM

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I had my first TTT in august 2007. Then in May I went to Houston TX and repeated is with the sweat test and respiratory challenge. They diagnosed me with POTS and adrenal system dysfunction.

My symptoms when they are really bad are:

severe head ache

Nausea and vomiting-(nearly everything I eat, no matter what it is, often even water)

Passing out as many as 7 times a day

Dizziness

Weakness

Body ache (Joints are really bad)

I forget things

Tremors

light, sound, and touch sensitivity.

Hives

And I'm so tired the idea of rolling over in bed hurts.

And I don't sleep.

I'm not this bad right now but today is a little better. I can get up and walk around a bit. and I kept some cheese down. I'll take what I can get.

I'm really trying to stay positive but it's hard. I had to leave school, move back in with my parents, and I can't work. I feel like a burden especially when it's this bad. I'm just looking for anything to help.

~nancy

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Hello Nancy

I'm so sorry to hear you are having a bad time. Unfortunately, being unable to attribute a bad patch of health to anything is pretty typical and it is one of the most frustrating things about POTS. Don't blame yourself - this is just how the illness is. Hopefully with the medication you have, this deterioration in health won't last too long (i.e. it probably won't be as bad as when you first got ill).

I don't have bad GI issues with POTS (I know there are plenty that do on this site), so I don't know what to recommend in terms of keeping food down. I can only imagine how much worse you must be feeling if you can't eat properly.

In terms of the fatigue, aches, dizziness etc I find it best to lie down as much as possible when I'm at my worst. When I start to feel a bit better, I do a bit more (eg, walk short distances, potter round the house) and gradually get back to normal. This can take weeks/months and is not without setbacks, but I do get better and can lead a pretty normal life most of the time.

I hope you start feeling better soon.

Best wishes.

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I'm in the same boat... almost exactly. I've been under control with meds for about 3 1/2 months. The last 3 or so weeks have been bad again and I too cannot figure out why. I just keep hoping it will pass. I am pretty new to this too, so it's very frustrating! Hang in there... I'm with you!

Hollie

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'In terms of the fatigue, aches, dizziness etc I find it best to lie down as much as possible when I'm at my worst. When I start to feel a bit better, I do a bit more (eg, walk short distances, potter round the house) and gradually get back to normal. This can take weeks/months and is not without setbacks, but I do get better and can lead a pretty normal life most of the time'

- Great advice. And its all true. Just be patient is all really we can do.

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