Is there a condition that is opposite of postural tachycardia?

[Fire_Shaman]

Hi all,

First time posting on a forum for this issue. I'm very desperate for answers and hoping that someone here may have an idea what specifically this condition is so that I may finally get properly treated.

A little family background: My father has a severe arythmia condition. He has had dozens of cardioverts and 2 ablations. So far so good after his last one (fingers crossed!). My sister has supraventricular tachycardia and has had to be put on meds several times to stop the elevated heart rate or it would not have stopped on its own.

Myself, I have had a "partially diagnosed" arythmia/palpitations/tachycardia condition with unknown cause with no treatment plan. I've seen many doctors, have had a few halter monitors and ekg's yet nothing was detected (bad timing).

I've been told everything from I'm just sensitive to my heart rate fluctuating and even not to worry, that it's normal. I can assert that what I experience is most definitely NOT normal.

In a nutshell, I seem to have the opposite of what I've read as being POTS. I say opposite because standing does not cause tachycardia with me, it peculiarly relieves it. Most of the time, the trigger is spending too much time laying on my left side or in a way that puts a lot of pressure on my heart. Big yawns, sneezes and crouching down can also sometimes cause a bout of tachycardia. The only way I have found to stop it is to stand up, that is, if I'm laying down. If I'm already standing then crouching for a few seconds then rising to my feet quickly will work. In both cases though, I can feel the blood rushing to my head and hear it in my ears then within a second or two, my heart rate drops back down to normal. Basically, blood rushes are my savior. But why?

In an effort to self-diagnose, I purchased a BP monitor and I've tested my heart rate and blood pressure countless times. The results are consistent and predictable. As soon as I trigger a bout of tachycardia, I measure my BP/HR to find that my BP is normal and my HR is double what it should be. My heart rate is relatively low usually, between 50-60 at rest. When in tachycardia, it jumps to 100-110. And like clockwork, as soon as I stand, within 10 seconds I feel pressure in my head, my heart rate drops back down and I feel normal again. The BP monitor has confirmed all this dozens of times and even captured a few instances of "irregular heartbeats". But the doctors I've seen don't seem to understand or care about the results of my self-testing.

Is there such thing as a condition that is sort of the opposite of POTS, where standing provides relief instead of being a trigger? Because my BP/HR are naturally low, I've often thought that maybe my heart is trying to compensate by kicking it up a notch when they fall too low? I really don't know but I'm so frustrated by still having no answers after years of research, tests and doctors visits.

If anyone has any idea what this condition is or how I can better find out what is going on with me or if you know someone with a similar condition, PLEASE let me know! I would be forever grateful.

Even if this condition is benign and I'm one of the lucky ones who has found a way to stop the arythmia temporarily, I still want to know what it is so I can help myself. My heart working overtime for extended periods, especially at rest, cannot be good. I'm worried that if I let it go, it will be a heart attack waiting to happen some day. It also happens in my sleep sometimes and I don't know how long it has been going before I noticed. Being in tachycardia for hours on end can't be good either.

Any/all information or guidance would be great. Thank you so much!

[Jack8]

Hey

I apologise in advance for not being helpful, as my symptoms are very specific, HOWEVER I do experience something similar regarding getting up and moving around... My HR may be around 90 or more while lying down not doing a lot, but I can guarantee that suddenly jumping up will initially lower it to around 50 or 60 for about 10 seconds before it shoots back up again!

I'm unable to help as this is something that's not a primary symptom so not anything I've mentioned, although I can completely identify with your frustration of having a 'benign' issue that is supposedly 'normal'. I started a topic a few posts down about my severely fluctuating pulse - it varies up and down constantly but because there's 'technically' no arrhythmia like AF and all tests (including MRI) came back normal, I've been told there's nothing to worry about.

Although I said I could offer no advice, I will give you this - whatever your symptoms are and regardless of what you've been told already, IF you are an NHS patient, find a local cardiologist (or better yet, an electrophysiologist - I can refer an excellent one in the Midlands in the UK) at a PRIVATE hospital and pay the £100 - £200 initial consultation fee out of your own pocket. This was the key for me to get access to better treatment. NHS doctors are given budgets, and things like ablations are expensive, in the region of £80k. A private doctor will take a greater interest in you and will refer you to the treatment you need on the NHS. You'll have to join the NHS waiting lists, but you won't even get the option with most NHS doctors. You are effectively paying a gate pass to better care.

Best wishes for the future, and keep us updated!

[Fire_Shaman in reply to Jack8]

Thanks so much for the reply and for the advice. I may just do exactly that because GP's are not helping me. Perhaps it's time to dish out some coin and see a private doctor or a specialist, as you said. Thanks again and best of luck with your own ticker, my friend.

[Jack8 in reply to Fire_Shaman]

Do it, seriously. Perhaps 5% of GPS are worth their salt, but my experience of them with dealing diligently with serious issues is rather damning. Even NHS specialists are tainted - I was once famously told by a cardiologist, "Forgot about this ablation thing, it's not going to help you." One year later I had it done successfully after opening the 'private' line of enquiry!

Best of luck to you to my friend, keep the pressure on and push push push the issue. The more people who are unsatisfied and demand further investigation, the more the broader scientific community will research this and perhaps one day find a way of curing these problems for good!

[Goalnsr]

I agree, that you should see an EP. the only thing I can think of is perhaps a variant of orthostatic hypotension, or some kind of vasospasm. Definitely worth investigating and your detailed note taking will be of great value.