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how do you describe feeling "POTSy"?

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Just wondering, I hear everyone say that on this site alot.

I think I am feeling quite POTSy right now, its making it hard to type. I get very shaky and my heart pounds, I can feel it pounding from my ears to my fingertips and sometimes even down to my toes. Sometimes I am tachy along with it, especially if I lay down at night or stand up suddenly, and every morning. Then there's the lightheadedness and pressure in my head - I feel it in my eyes and all over my head if I stand up or go upstairs, I don't know if that's sinuses or POTS....which by the way I don't officially have. I also feel jittery and anxious too, and for no reason. Its very frustrating. My symptoms have switched over the last few weeks - before when I was working and on my feet for 8+ hours a day I was lightheaded a lot more and I fainted (only once) when standing up suddenly, but it seems to have calmed down since being at home, and now I know how to sit and breath or lay down if i feel like I'm going to pass out.

It is annoying because I had such a good day - I went shopping this morning by myself for a few hours and got some crafty things to do at home and some gardening stuff, and spent another few hours outside and felt wonderful. And my garden looks good as a result :) Then we ate dinner and now I have this whole body bad feeling.

Anyways...sorry to vent - it would be great to hear what your defintions of POTSy are - I really have benefited from all your posts since I joined.


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What a fun thread, Claire! I hope a bunch of POTSers put in their 2 cents.

Before I heard the term POTSy, I used "woobly." No one knew what that meant either.


-had a GREAT day, now feel like CRUD, seemingly no reason whatever

-can't get warm/get too hot (happens almost simultaneously)

-see stars, hear a buzzing noise in my head

-feel jittery or bogged down, like i can lift the Sears Tower or I can't lift my head

-brains spins at MACH 8 or is clogged with pea soup

-I feel like i'm a genius and i feel like the world is ending (simultaneously)

-the core of my being is being sucked to China

-the whole of my body is floating to outer space a la Major Tom

-moody moody moody moody MOODY

-skin feels like it's crawling off because it's too electrified, seeks huge magnet somewhere

-heart is POUNDING (sometimes tachy, sometimes brady, sometimes Fonzi?)

-see my heartbeat in my eyelids, get short of breath

-have to pee, but not really

-dehydrated/"shocky" feeling, vertigo

-and, waking to find myself in puddle of my own drool because i didn't pay attention to the signs and passed out!

(Actually, then I feel like a putz, :) not POTSy)

yep, it's a fun disorder. especially trying to explain it to others. they think i'm making this up! You can't make stuff like this up! Who'd want to live like this? Oh, me, me, pick me!!

Hope you feel better!

love and light,

Lulu :)

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POTSY to me is so many things. The best way to describe it is.... over sensivitve to everything. every part of me has a symptom, nausea, hot, chills, skakes, oh so tired but I still am able to get out of bed. Then I have adrenal storms where I HAVE to stay in bed or I hit the floor and feel like I am going to die, the oh too familiar feeling of impending doom. :):)

It stinks!!


Lunatic I couldnt have said it better myself, you are my evil twin!!!

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I get the jitters so bad I have people ask me if I'm cold and I say " no, I'm hot but give me a minute"

The looks I get at the gym are quite funny. I'll be fine one second and holding onto the nearest solid object for dear life the next.


Sometimes I can't even putt in words how I feel, if I tried it would sound like this; ?????. How do you put that in words?

This cheered me up, thanks.

Nothing like pokeing fun at yourself to make light of the blahs. :)


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I'm showing my husband LuLu 's list of sx. Last night I sat down and said I saw sparkles and he didn't know what I was talking about. I thought he was kidding. He wasn't. I thought he undertood. I know he's trying! But how did he miss that , and who knows what else in the last 3 years? Thanks!:-)

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