cberau

I'm in Prescott, I'd be interested.

Mine get itchy either too hot or too cold. I also have Raynaud's and pompholyx (dyshydriotic eczema) from my palmar and plantar hyperhidrosis. It usually starts as very little red/brown vesicles, then the skin breaks down and just stays in all different forms of nasty for a while after a breakout. Cold in chicago definitely does it to me, and so does the very dry summer here in arizona (so I'm thinking maybe just dryness). The dryness doesn't make sense as I use lotion on my hands and feet, and it doesn't happen anywhere else. My worst breakout ever was in Dubai while I was working there, 115 degress F and 98% humidity, all three layers of skin on the soles of my feet broke down and fell off and I had bare muscle and ligaments showing. It was quite painful.

I got a minor in psychology, I'd rather pursue that than aviation honestly. I honestly have gotten really lukewarm on aviation since I started school, but that could just be the school I went to.

Ehh maybe. Not a huge fan of bureaucrats though lol...

He said symptoms, my extensive clinical history, physical presentation that day, and progression of blood pressure and pulse, extremely cold and sweaty extremities were more than enough for him to make a solid diagnosis without testing catecholamines supine vs orthostatic. Of note too, my resting pulse supine is somewhere between 45-55, sometimes as low as 38, yet by the 10 minute mark I was at 155, with narrowing pulse pressure, but rising mean arterial pressure. This guy said he knew it was hyperadrenergic just by me walking in the door and him shaking my hand. Also my most prominent symptoms are the headaches, extreme fatigue, nausea, not so much syncope unless I am doing some activity with my hands above my head like changing a light bulb. He suspected MCAD because of blotchy redness forming on my upper chest, and my sudden onset allergies to various chemicals. I brought a very very detailed history with me, and he commented that I was very good in describing the timeline of events, and I made it clear it was a gradual, insidious and increasingly progressive syndrome in my case. I also had documents from mayo over the past few years that really raised suspicion of hyperadrenergic pots, along with an endocrinologist at mayo suspecting hyperadrenergic pots.

My onset was probably about 11. I noticed the light headedness more in the beginning, but not as much now. Now it is just like a permanent hangover type feeling, incessant headache, nausea, extreme fatigue, inappropriate appetite, etc. There is also some paralysis and muscle atrophy progressively happening on my right side that has been found quite a few times, mostly in my face and extremities, and hyperreflexia. I had a couple of crazy illnesses, but I feel like they were after the onset of symptoms. It was a very gradual and insidious onset, with things really accelerating somewhere around 2010. The most odd thing I remember, is all of a sudden overnight sometime when I was 11 i got all of these skin allergies, like major contact dermatitis to some fragrances, colophonium (a preservative in antibiotic creams), formaldehyde resin, nickel, potassium dichromate, and a few other things. All those chemicals are in basically everything I come in contact with daily.

I live at 6,500 feet in Arizona, I haven't really noticed much to be honest. I regularly travel away from this elevation, and (before I got diagnosed) was a pilot in unpressurized aircraft (and we would regularly get up to 13,500 feet), and I honestly didn't feel too much difference. However when we would pull G's in the plane, boy did my symptoms get the best of me. Flying in a commercial airliner, the atmosphere is usually pressurized to about 6,800 feet above sea level, and less than 10% humidity, so basically what I deal with every day. I did notice moving to this area, I was extremely tired until about 2 weeks after. Going down in altitude doesn't do anything to me though, no better, no worse.

Yeah time has definitely slowed down for me. It seems like an eternity since I started developing symptoms, let alone since I got to University. The last 5 years (4 years at school trying to be a pilot) and a year since still flying and working as an aircraft refueler have been the most grueling, miserable, most drawn out years of my life. My POTS was an insidious onset, and progressively getting worse, which means I probably can't expect it to go away. The time between doctors appointments and lost hope of new treatments to hopefully make me feel better (both before and after I was diagnosed) seem to feel longer every day. The drive home from work is 7 miles but it seems to feel as if that mileage is multiplying exponentially. I wish I had something more positive to say.

Halfway through the TTT I could see the pain on his face slightly when I think he was sure it was POTS. He knew that was the end of the my career, and you can tell he really deeply feels for his patients. Nothing fake about him at all.

They did an entire battery of autonomic testing, the TTT itself was about 25-30 I think, not too sure though. The entire appointment was 3.5 hours and dr barboi stayed at my side the entire time. I have a feeling the TTT got cut short because of excessive pulse and I was about to pass out. He was alarmed at the color of my legs and feet, actually asked permission to take pictures (and he's for sure seen a lot of POTS patients, he has to be one of the very best in the "industry") he said where the probe on my foot from the qsart was looked extremely strange during the TTT upright portion.

Haha, we're a different bunch. I'm more Arizonan than Kiwi by now though I'd say. I'm also from the Auckland area, Clarks Beach/Waiau Pa

I'd just like to introduce myself, my name is Chris, I've been on the outside observing for a little bit and absorbing information on my way to finally getting a solid diagnosis. Last week I traveled to Chicago to see Dr. Barboi at Rush University, and ended up getting a very solid diagnosis of Hyper POTS, with possible mast cell degranulation. I was prior diagnosed with palmar/plantar hyperhidrosis and Raynaud's syndrome, along with anxiety and depression. I know I'm not anxious or depressed, maybe a little dysthymic because of all of this. Not sure if the palmar/plantar hyperhidrosis and Raynaud's are secondary to POTS or cooexisting, doesn't matter too much I don't think. Dr. Barboi was 100% amazing, he seriously blew my mind, his staff works with ridiculous efficiency too. Much better than anything I've dealt with here in Arizona. I'm a 22 year old male that just graduated college, with a degree in aviation (I was a professional helicopter and airplane pilot, until last week obviously, FAA medical cert is revoked because of this, so that's a $400,000.00 education down the drain), and now I'm trying to figure out what to do with my life. Losing my medical cert wasn't exactly a surprise or a shock to me, I had a feeling there was something very wrong with me. Doctors have taken me on large misadventures looking for neuroendocrine tumors and such, but 24 hour biochemical testing all came back normal. I'm sure my story is similar to a lot of other people here, except mine was pretty drawn out, lasting about 9 years progressively getting worse, but now I know what's wrong. I also apparently presented with some other odd nerve problems, slight right side muscle atrophy in face and arm, and my pinkies have highly impaired feeling or response, I can't remember the specifics of what I was told. TTT was "highly profound" according to Dr. Barboi, sweat test had highly abnormal results, but I think all the other tests were somewhat normal. Dr. Barboi said I had some of the darkest purple legs and feet he'd ever seen during the TTT. And one of the coldest hands he's ever shook. I might be moving back to Chicago soon (kind of grew up there, but originally from New Zealand) if I get a job I interviewed for with United Airlines last week, fingers crossed. Dr. Barboi begged me to keep in touch, whatever happens though. Sorry if my grammar is crap right now, I'm in a nasty brain fog episode, but I just wanted to introduce myself to y'all, feel free to ask any questions or share experience or advice with me. Thanks