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What are your POTS symptoms? LONG POST!
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What are your POTS symptoms? LONG POST!

Hi all, I am just wondering if you could please go I to detail about your POTS symptoms.

My story is, about 11 years ago, around age 14, I began to be very fatigued. I chose to sit (preferably lay down) at any chance or opportunity possible. As I got older, this symptom got so much more worse, but I just ignored it and chalked it up to lack of sleep or something I ate. It got to the point that I could hardly sit in class without needing to lay my head on my desk. After some time I began to withdraw socially and I had brain fog and poor concentration when upright that I eventually dropped out of high school. And I figured I had ADHD or something that was causing my lack of focus.

Then the lighheadedness started. It started back about 7 years ago. It never went away (except when I'm laying down or sleeping). Being upright it's a fight to walk feeling so faint like.

Then, nausea started. Every time id get even slightly active(clean the house, play with my kids), I'd sweat, feel like fainting and nearly vomit. I also noticed my heart would race when I would hardly do anything (like for eg pick up a couple of my daughters toys).  Every time Id get up to do something, my heart races, so hard that it takes my breath away.

I went to the dr today and he took my pulse while sitting in his office and it was 80 bpm, and then he made me stand up and he took my pulse and was 140 BPM!!! He told me this is why i feel so unwell when I'm upright and standing.

Sometimes I'll get a sudden rush of shakiness and have to have to lay down because I feel like I'm going to collapse.

I feel faint-like when standing in long lines.

In winter it takes my feet hours to get warm after lying in bed trying to warm them. They stay cold for so so long, it's a horrible feeling when I just want to feel warm.

Get thirsty very easily.

I also get sudden bowel movements very rarely from time to time.

I could go into more detail but it's all so complex id be typing for hours.

I have been tested for every disease known to man, except for POTS.

Because I have had rapid heart rates I have only been diagnosed with anxiety, which is ********!

I'm seeing a cardiologist in a months time and then after I have this baby (30 weeks preg with #3)  I'm getting a tilt table test done.

In the mean time, does my condition sound like POTS? I'm desperate for answers. I'm so over this and just want to start some form of treatment.

Thanks for listening. :)
4 Comments Post a Comment
Yes, your description sounds like POTS.

I don't have POTS, I have generalized dysautonomia. I hope someone else will describe their POTS symptoms for you.
The tilt table test will reveal what's going on with your blood pressure. You have to see the numbers and then go from there.
Have you looked into Chronic Fatigue Syndrome?
Yes, for sure you have POTS. But POTS is not a disease, it is a syndrome. So you still need to figure out what is causing your problems, it can be a number of things and in half the cases no cause is found; then you will just get the diagnosis primary POTS.

It is not anxiety, that is a misdiagnosis.

First you should check your adrenal glands and blood electrolytes. That's a good start. A neurological exam is good to rule out any neurological disease, Parkinson or MSA etc.

How does your blood pressure react to standing? Does it go up or down after five minutes of standing (compared to sitting down)? If it goes up you should also be checked for pheocromocytoma and similar. If it goes down for Addison. Also iron levels, b12 etc can be good. A visit to the cardiologist just to be sure may also be justified.

If everything of this is normal then there are some more exotic things to test for but these are the normal ones.

There's a fifty-fifty chance that they will find something.

Either way there is help to get.

Good luck and keep us updated!
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