im just now experiencing real "flares" like real tos with the nausea and all of that.

i freak out completely, i actually feel like im going to faint. this has never happened in public, fortunately.

but when it does, how do you all handle this? are there any tricks to making it easier until you go lay down somewhere.

i won't actually faint right? i don't understand why i feel so nauseous either.

Do you mean a flare that instantly happens ?? when you are out & about,vs one that is already happening and you go out & about - it gets worse???

I only had slight nausea during the dizziness times early on. I guess I did have the dizziness almost to point of a faint a few times.
But I just stood still and took calming breaths till it passed.

But I think for me those feelings were due to the vertebral artery being messed up by spasms and pulling the on the vertebra themselves.
It faded away after being off work & good PT.

yeah actually i take that back i have had one in public. i guess technically it wasn't instant.

i was waiting for the bus, it started some, then riding i felt like i was going to burst into tears...i was scared and didnt know what to do. i no longer ride the bus bc of that.

im pretty sure i have POTS which does not help.

and anxiety. just thinking about it makes me anxious. i guess breathing better is the only thing i can do in the moment.

ive tried shaking out my hand..from the deep paralyzed feeling

but i dont remember that working much, lol

I had to look up POTS, wasn't sure what it was .
http://www.dinet.org/pots_an_overview.htm
just a portion of the page for others that may be reading.

[While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).]

Wow..this is really eye-opening to me! The symptoms you describe with regard to "flares" such as nausea, faintness, and dizziness I have experienced myself. I've had 2 incidents of this so far that I can recall. I never realized those symptoms were my TOS flaring up. The 1st time I was just sitting on my couch watching TV and all of a sudden I felt really dizzy and slightly nauseous, almost like I could faint. My husband had to open the window so I could breathe in the cool air or I really think I could have fainted. The 2nd incident was about 2 weeks ago. I went out to see a movie with my family and while was out, I felt progressively worse. I thought I was getting the flu because I felt really nauseous, fatigued, and my body felt like it was on fire, but I had no elevated temperature. The next day, I felt much better and was able to go to work. I've just been recently diagnosed with TOS and all this is honestly scaring me to death. I never know how I am going to feel from one day to the next and sometimes I feel just horrible. I'm glad this support group exists because I don't know where I'd be right now without all this info and all these caring people. Thank you so much!

hey sry still recovering from flare so lazy typing.

people with EDS are prone to POTS. for some reason

Ehlers-Danlos Syndrome (EDS), a connective tissue disorder, is found in some POTS patients. Physicians propose that these syndromes occur together due to abnormal connective tissue in dependent blood vessels in those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures (Rowe, Barron, Calkins, Maumenee, Tong & Geraghty, 1999). Simply put, this connective tissue abnormality allows excessive amounts of blood to pool in these patients' lower limbs when they stand up.

Are your flare-ups or shut-downs?

Flare-ups: pain hightens, burning, throbbing, numbness, dystonia
Shut-downs; ur autonomic and sympathetic systems shut down due to pain, lack of hydration, breathing stops

learn ur tolerance and prepare ahead

well its triggered by a deep spasm which is why i said flare up