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lucy.a · 07-27-2007, 06:32 AM

Any of you CFS suffers been diagnosed with postural orthostatic tachycardia syndrome?

I was diagnosed with m.e at the age of 15 despite my main symptom being heart palpitations and racing heart rate, referred to numerous cardiologist who all just put it down to m.e.

Last year (i'm now 22) it got that bad and after being bed ridden for months with a fast heart rate and lots of PUSHING my own useless consultant, i got referred to a research doctor who was doing research in blood pressure in m.e patients.

After her investigations she has diagnosed me with pots and sinus tachycardia. So i'm now on better treatment for blood pressure and heart rate.

Anyway it took 6 years to get it that far, and 6 years of being so ill i've been housebound. I was wondering if anyone else has pots?

I also believe i still have m.e as before that diganosis, i had sever glandular fever, which a lot of m.e suffers find can have been a trigger.

Any takers? Hope you're all not too bad at the moment

CFD 333 · 07-27-2007, 07:06 AM

Hi there, Lucy. I've never been tested for or diagnosed with POTS, but from my own research, I learned that it's a pretty significant if not common problem amongst CFS patients.

I'm curious though, what does it feel like to have POTS and does it differ from the kind of fatigue most of us feel already? I know that the symptoms we suffer get worse from standing up, but I've always attributed that to just being on my feet too long. A lot of times, I don't even feel the effects of that until later on in the day or sometimes the next day...post-exertional malaise.

How were you ultimately diagnosed with this? Did you have to undergo the tilt table testing? I'm a little frightened to do that test...obviously, if you have the disorder, it must be a highly unpleasant procedure.

Also, what treatment are you currently on now?

Thank you.

music12 · 07-27-2007, 10:12 AM

I was diagnosed with P.O.T.S. but through my own research I have discovered that adrenal fatigue can be diagnosed in the same way as P.O.T.S. - the B/P falls (a pretty significant differential) when taken sitting or lying down and then standing. Adrenal fatigue can also produce the same kind of tachycardia as P.O.T.S. I have both these symptoms. I really think adrenal fatigue is common to those of us with immune disorders.

stackzone · 07-29-2007, 08:38 AM

I have this and if I am allowed to say- Dr Grubb in Ohio is the guru in this area. But, its like a year wait to get in to him. The lead singer from the Wiggles was forced to retire due to this. Dr Grubb told me that if the Wiggles guy cant get successful treatment in Australia, he will be seeing him.

I take a beta blocker and try to stay conditioned, but thats easier said then done. He also said to drink plenty of fluids.

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