Who else has a side of POTS to go with their autism?

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little_blue_jay
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03 Sep 2014, 3:42 pm

Ugggggh I'm feeling very POTSy today.

Sorry wasn't sure to put this here or in the other conditions forum but that specifies other 'psychological' conditions ....

I could tell when I woke up today that it was going to be a POTSy day. Odd shortness of breath feeling, sensations of palpitations, weakness, brain fog, etc. Have had heart tests up the wazoo .... all normal except for last one (loop recorder which did show 'sinus tachycardia') My POTS is not constant - it waxes & wanes, some days I feel not bad unless I try to walk too fast or do too much housework too fast... but some days it is severe.. it is days like these which are the (main) reason I can't work at the coffee shop (standing) any more. My blood pressure tends to be on the low end & all my doctor says is "don't restrict your sodium". My last bad flare-up I went to the ER with severe tachycardia - but of course they had me lie down and by the time I was hooked up to the EKG it had gotten better & nothing showed abnormal. I told them 'let me walk around & I'll show you something' but they explained that their EKG doesn't work that way. I wish I could have a loop recorder available all the time!

Anyway who else has a side of POTS to go with their autism/Asperger's?

Does yours wax & wane or constantly there?

What do you do about it if anything?

What are your worst symptoms? And what lengths have your symptoms driven you to i.e. gone to ER, etc.

Just looking for anyone to commiserate with me :cry:

I HATE POTS!


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1401b
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03 Sep 2014, 4:16 pm

What's a POTS?


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little_blue_jay
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03 Sep 2014, 4:19 pm

Postural Orthostatic Tachycardia Syndrome.

Basically it gives one issues with standing - Tachycardia: excessively fast heart rates. Not fun stuff.

http://www.dinet.org/index.php/informat ... s-symptoms


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Diagnosed "Asperger's to a moderate degree" April 7, 2015.
Aspie score 145 of 200
NT score 56 of 200
AQ score: 47
RAADS-R score: 196
"Everyone inside the circle is normal. Everyone outside the circle should be beaten, broken, and reset, so they can be brought inside the circle. Failing that, they should be institutionalized, or worse, pitied. Why would you feel sorry for someone who gets to opt out of the inane courteous formalities, which are utterly meaningless, insincere, and therefore degrading? Can you imagine how liberating it would be to live a life free of all the mind-numbing social niceties? I don't pity this kid. I envy him." Dr. Gregory House, speaking of a boy with autism, House M.D.


cberg
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03 Sep 2014, 4:21 pm

Not sure if I have it but I've beed diagnosed with a minor arrythmia and I notice your symptoms when I wake up; tea really helps me with the effects although I mostly notice it subside when I obey my compulsions to get more exercise. Being a cyclist is probably the best remedy I know...


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little_blue_jay
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03 Sep 2014, 4:36 pm

Trying to exercise on a POTSy day would probably do me in 8O

On a good day even, I can't usually walk very fast, especially if it's humid. During a flare-up I don't dare exercise. Just moving around the house a bit made my tachycardia so bad last time - what I had been trying to do was take a bath the night I last went to the ER; it had been humid & I just wanted to take a cool bath & go right back to lying down but I didn't even feel safe getting in the tub due to the racing heart - it was so bad I can't describe it. I remember when I had the Holter monitor on years ago and my HR went to 188 BPM and this was way worse - I'm sure if I had had a loop recorder on it would have shown over 200 8O


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Diagnosed "Asperger's to a moderate degree" April 7, 2015.
Aspie score 145 of 200
NT score 56 of 200
AQ score: 47
RAADS-R score: 196
"Everyone inside the circle is normal. Everyone outside the circle should be beaten, broken, and reset, so they can be brought inside the circle. Failing that, they should be institutionalized, or worse, pitied. Why would you feel sorry for someone who gets to opt out of the inane courteous formalities, which are utterly meaningless, insincere, and therefore degrading? Can you imagine how liberating it would be to live a life free of all the mind-numbing social niceties? I don't pity this kid. I envy him." Dr. Gregory House, speaking of a boy with autism, House M.D.


cberg
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03 Sep 2014, 5:23 pm

I've seen mine in the same range. I got a heart rate monitor watch on my birthday and I've noticed a similarly extreme range, from around 40-140+ bpm. That said, I'm in agreement with DINET... I love to exercise my legs. Not always easy but I'm pretty determined to spend more time with nature.


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little_blue_jay
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03 Sep 2014, 5:52 pm

cberg wrote:
I've noticed a similarly extreme range, from around 40-140+ bpm.


Yours gets as low as 40 BPM while awake? 8O That would freak me out nearly as much as the tachycardia! I've noticed wide swings in HR variability too - sometimes I can tell it is not even 1 beat per second so perhaps 55 BPM or so... my doctor told me HR in the 30's to 40's is normal during sleep... dunno about while awake :? (unless one is an extremely fit athlete, which I am not!)


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Diagnosed "Asperger's to a moderate degree" April 7, 2015.
Aspie score 145 of 200
NT score 56 of 200
AQ score: 47
RAADS-R score: 196
"Everyone inside the circle is normal. Everyone outside the circle should be beaten, broken, and reset, so they can be brought inside the circle. Failing that, they should be institutionalized, or worse, pitied. Why would you feel sorry for someone who gets to opt out of the inane courteous formalities, which are utterly meaningless, insincere, and therefore degrading? Can you imagine how liberating it would be to live a life free of all the mind-numbing social niceties? I don't pity this kid. I envy him." Dr. Gregory House, speaking of a boy with autism, House M.D.


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03 Sep 2014, 9:15 pm

1401b wrote:
What's a POTS?
I had to look it up because I did not know either. The other actual thing called POTS is really Plain Old Telephone Service. There is an actual real thing actually really called that and it uses the same acrostic. But I figured you were talking about the syndrome rather than the service! :D


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TrippyPhysics
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03 Sep 2014, 9:45 pm

i have it an take fludrocortisone



auntblabby
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03 Sep 2014, 11:52 pm

i have a bit of orstostatic hypotension, i just learned to get up slowly. no more squat thrusts for me.



Apple_in_my_Eye
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04 Sep 2014, 10:32 pm

Yeah. I take midodrine and a ridiculous amount a salt for it. The cognitive stuff has always seemed weird to me, in that once it's set off I have problems for days even if my BP/HR is back to normal soon after it starts.

I had a nice, dramatic tilt-table-test which was nice in that it got rid of any 'well that's not an objective test' or other waffling bullcrap.