Diagnostic Criteria

[Syd]

I have most of the common POTS symptoms(been sick for 10 years, onset as a teenager, but realized what was going on a year ago), except for fainting and dizziness (my blood pressure, while low, does not drop when I stand up). I've been to Queen's Square in London where they say they suspect I have POTS caused by hyper mobility, and they did very quick measurements lying and standing (just did the measurements as soon as I was lying down and when I had just stood up) that showed a 50 or so HR increase. However, the waiting list for proper testing at Queen's Square is forever, and I need a proper diagnosis to explain to my school/work what's going on. My GP did a poor man's tilt where my HR went from 80 to 144 after three minutes, and when I check myself it usually goes from 50/60's to 110-130 and stays up for the 10 minutes.

Anyway, I finally got a tilt test at another hospital to confirm the diagnosis, and although I don't have the numbers yet, my HR went up around 40 bpm and stayed up for the 10 minutes the test lasted, BP was normal. However, I didn't feel very ill during the test, I almost never feel ok because of my constant symptoms (mainly fatigue, pain and palpitations) but I can't say I got much worse during the test. Because of this the doctor was hesitant about giving me a POTS diagnosis, and mentioned that the Mayo clinic(I think that's what it was) recommended not giving a diagnosis when the tilt is symptomless. Now, I can understand that, but I usually do ok standing up(except when the HR increase is higher than it was on the tilt), and get worse the more I do. I can run and do quite well on endurance tests, but I get very ill afterwards, sometimes for days or weeks. I've monitored my HR with a pulse watch(and have also had a holter, at yet another hospital, that showed sinus tachy up to 190 during the day when I was active, but not exercising), so I'm pretty confident that my HR is a big part of problem because it's usually much higher when I'm feeling ill.

So I was wondering if anyone knew what the doctors at Mayo(if that's where it is) do about tilts that are positive for POTS (30bpm HR increase or more) but otherwise symptom free, when the patient has a history that seem to indicate POTS or at least exercise intolerance due to tachycardia ... ?

Secondly, I can do a few of the hyper mobility maneuvers, putting my palms to the floor and touching my thumbs to my wrists and I do get sports injuries easily, but could hyper mobility be the cause of my suspected POTS even if I don't have PB swings? The doctor at Queen's square said yes, but I don't understand how that would work... I just started beta blockers(was off them for the tilt) and they have helped. The doctor that did the tilt said that my nervous system probably was over sensitive, and I guess would mean hyper-POTS... So apparently I have symptoms of both hyper mobility and hyper-POTS, but I have no idea which it actually could be...

Sorry about the rant, but I won't get to see a specialist for a while and I need to convince my GP to give me a diagnosis off of the tilt results. Any input would be greatly appreciated:)

[kclynn]

TTT have been referred to as a "dirty test" because the results can vary. My son's went up 27 the first one (though over the 120 threshold) and up 50 the second one 3 months later. He did have symptoms for both, though, but they were mostly discomfort from pooling and some nausea. He never passes out.

I think with Hyper Pots, it means your BP goes up. Your nervous system is over sensitive because of autonomic dysfunction. With just POTS your BP wouldn't change much. Some people have longer TTT and my son's first one was 10 minutes and the second 45 and we learned more.

Maybe your GP would feel better about calling it Autonomic Dysfunction (which is what the MAYO Dr. called my son's) which should probably be enough and if he would say with Probably Pots it would be that much better.

I think this is really frustrating. Some Dr. don't even require a ttt, some are too rigid. It certainly sounds like POTS and also, you said "I didn't feel much worse" Do you mean you had symptoms but they were not too bad? If you had symptoms, you had symptoms. If you felt normal with no symptoms whatsoever, you didn't have symptoms.

I don't know much about the hyper mobility, so someone else can probably give you good info on that.

[abnel]

Hi, I just wanted to share my experience with TTT and poor man's tilt tests. My TTT in 2010 showed a sustained 24 BPM increase in HR over 10 minutes with HR only doing around 100 and no major increase or decrease in blood pressure. Even though 100 isn't a high number I was very symptomatic, felt very tachy and felt every heart beat. I had facial flushing and nausea. Even though I didn't quite fit the criteria for POTS they still diagnosed me with it based upon my symptoms and history.

During the poor man's tilt test this year my HR increased more than the 30 BPM and my blood pressure kept climbing. But I felt better than during the TTT, although I did become short of breath as the test went on.

Although clinically you have to have an increase in pulse of over 30 BPM within 10 minutes of standing from the supine position or a HR of over 120 within 10 minutes, I think an experienced doctor should recognise that a patient's history could lead to a POTS diagnosis, because some POTsies can pass a tilt test or poor man's tilt on a good day, or even on a not so good day (as happened in my case). Similarly, if someone is failing a TTT but has no symptoms, the patient's history has to be critical in diagnosing POTS.

[issie]

I have EDS hypermobile type and also have higher blood pressure. They also usually check to see if your noriephprine levels increase too much from lying to standing and factor this into the hyperPOTS label. The med they give is beta blockers but if you have a mast cell issue you usually can't take them. (I couldn't and I tried about 5 different ones.) Now, trying clonidine, we will see. It has lowered my bp down and the tachy isn't as bad - but super sensitive to meds and having to only take a quarter of a pill twice a day. Couldn't take a half even. Have to give it longer to know if it's going to work. I have really low blood pressures at times too - so with me it's a very touchy hard to figure out and treat type thing. EDS can be part of the reason for POTS - but there are some people with EDS that don't have POTS - so it can't be the only issue involved in it. More research needs to be done.