kalamazoo

I honestly did not know such a rare disease existed, I am so sorry. Sometimes it's hard but remember to appreciate each day youre granted.

Half of me wants to cry, half of me wants to rejoice. what will I do with my free time now?

But on a serious note I was diagnosed yesterday after being testing for every single thing in the book. But I'm still worried because it was by a doctor who doesn't actually know a lot about pots patients and has only seen two prior to me in his 20 years of practice. Well, he didn't really diagnose the sub categories or anything but now I feel like I'm at square one. I feel like I have to change everything, even though I already have. But now I'm moving to Washington to search for more experienced doctors for my treatment, but I do know I will be getting something on the 7th as far as medicine wise. I need a beta blocker, anxiety, and who else knows. I'm not sure where this post is really going but I knew you would all understand.

But I do have some questions, has anyone seen any doctors on the west coast that are knowledgable or has grubb worked with anyone else's doctors? Any advice would be appreciated. Really anything at all, from diet, medications, doctors, or books. I would really appreciate it.

- Kala.

I get this, It scares me so bad too. I can be fine and all of a sudden I feel like I'm about to hit the floor and I get hot, red, sweaty and my heart rate jumps to about 150. Takes about an hour to get over. Doctors seem confused about it.

I also have erythromelelgia. So the erythromelelgia is caused by the POTS?

How weird my symptoms got severe after I lost fifty lbs, I wonder if theres a connection.

I hope this link works. This was a very informative article and included the combine challenge which Is used to test for POTS. Found this plenty helpful

http://www.google.com/url?sa=t&source=web&cd=9&ved=0CEAQFjAI&url=http%3A%2F%2Fwww.ndrf.org%2FNDRF%2520Patient%2520Handbook%2FSecA_pp135-188.PDF&ei=2s2cUMvBI4LrygH_8ID4Cg&usg=AFQjCNG1nrCQtVmoQ0Rectudt1Jx51UskQ&sig2=CqBp2a18gYUYuWDAOJqNFw

I share the same story. I jist turned in my urine for my pho testing, I know a lot of pots patients get false positives, ill post my results here. You shoulf maybe be testing for hyper pots.

I have the swelling In my veins. It's very very scary and I actually could have erythromelalgia. My veins swell in my hands legs and knees and I can feel the fullness. They get heavy and elevating helps almost immediately. But I also get red burning tingling sensations so its kind of hard to explain. I also have severe heat intolerance. If I get too hot my body goes into a panic. I flush rwally bad and my skin gets blotchy. My face gets red and so do my hands and feet. Then my veins bulge and hurt. Its really weird and confuses doctors. Ive seen several doctors who all seem baffled but they suspect erythromelalgia and POTS combined. So sorry about your veins, its a horrible pain.

Can you explain the specifics of your diagnosis? As far as the ttt if you had it? Like your resting heart rate, when your HR peaked, blood pressure fluctuations and so forth? I think I have hyper pots but don't understand the diagnostic criteria.

And southbel, let me know what your results are!

I know that when I wake up my heart rate is always super high, I'm always extremely tired and slow and feel out of breath. And eati makes it worse.

Wow, that makes mr worried about my test. I believe ill come up positive because I already have high cortisol levels and I have the symptoms of hyper pots. Since you have hyper pots in interested in how your heart rate works when your laying to standing and how long It maintains the high heart rate. I always go at least 30 bpm from a down position to an upright one but my heart rate levels off in about 5/6 minutes. Upon standing it throbs so bad I can dee my heart rate in my vision and my head pounds.

I also get this.

Hmmm so you don't have pots anymore then? My heart rate shoots up and then tapers off. It's 85 to begin with then 145 immediately after being positioned upright and then leveled out at 115 and stayed there. thus definition and diagnostic criteria is so fuzzy!

So Naomi, how long did your heart rate stay that high then?

Can someone maybe fully explain the hyper pots symptoms or link me somewhere? I'm a little fuzzy on the diagnostic criteria.

I have a question pertaining to myself. I had a ttt and my heart rate wemt from 85 to 145 after immediately being slightly positioned upright. Then my heart rate leveled off at about 115 after about 3/4 minutes. I don't know whether my case fits yours or a typical pots. my doctor doesnt know either.

That's so weird. Im so confused about this test. My heart rate jumps IMMEDIATELY. and always by 30ish bpm. What I'm confused about that test is the 5-30 minutes, so does that mean the first 4 don't really count?

I know exactly how you feel. If I even try to go to the er they always give me xanax, klonopin or ativan. I do have a question about that artucle. I read the criteria but it says that the tachycardia has to be within the fiesta 5-30 minutes but my heart went crazy immediately and went down within 5 minutes. I'm a little confused?

Thank you so much for that article I will definitely show him this. And it is sad that I was immediately diagnosed with a panic disorder without any further testing, that was ten years ago. Now I'm in substantial debt and always want the doctors to find something. It's sad that It has to get to that point but I feel like in so close with diagnosis now, so hopefully I can get freaking diagnosed officially!

What exactly is a positive ttt do you know? I had one and my heart rate went from 90 to 150 when positioned upright, it stayed that way for a few minutes and then remained at about 115. My doctor says this is inconclusive.

So you were both finally diagnosed with pots then? Was it by ruling out these or was there further testing. My issue is that I dont want my testing to just keep continuing, its been almost ten years and I finally found a doctor. Now I just want a **** diagnosis.

oh wow, what a misdiagnosis! How were you correctly diagnosed for the hyperPOTS then? I believe I too am hyper pots, but my doctor is new to learning about POTS and doesn't really know much about the subcategories, so I'm kind of teaching him lol

Has any one else been tested for this? My doctor is testing me for this and Addison's disease and then will diagnose me with POTS if these come back negative, I just hadn't heard of this tumor but apparently it's almost the same as POTS but also greatly affects your blood sugar.

If you go to the main dinet website yhetes a physicians list, all the Info should be there. Good luck!

My heart rate always elevates by about 20 bpm whenever I'm sick. So when I'm sick my heart rate is about 100 resting. Anyone else get this?