I stumbled across the condition put of total chance - I've got most of the symptoms, if not all of them, and I do struggle with it. It makes sense since I've been going through this for a few years but all my tests come back clear.
Well I spoke to my Dr who had me in and we checked my heartrate seating and standing. It went from 103 to 134 if I remember correctly.
I got an at home blood pressure monitor and have been recording lying/sitting to standing and almost every time my heartrate goes up about 30 which is required for diagnosis.
It explains the blackouts that I've been getting.
But is this a heart condition, some sort of other condition? I can't find much research on it and was wondering if anyone had any experience.
POTS stands for postural orthostatic tachycardia syndrome.
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Rocketstorm
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I was tested for pots with a tilt table test and I came back with postural drops, the tilt back up to standing on the table was so slow my heart rate didn’t jump over the extra 30 beats. my heart rate spikes as soon as I stand and quite often get dizzy and loose vision normally There is a website for pots potsuk.org/ it’s not that rare. The link doesn’t work from this forum so copy paste it or google pots uk
Brilliant thank you. Yes I get dizzy, on bad times my vision will go black and sometimes I'll get ringing in my ears. I've had blackouts before. I've also had stomach issues which I read can be related - my family always thought they were anxiety related but I'm not really an anxious person. I get lightheaded and sometimes nauseous. Sometimes I find I lose my breath easily and I can feel my heartbeat. My resting heart rate is generally high (as I am an elite athlete) at 80/90 where it should be 60 max for my fitness levels. I've had my heartrate over 150 upon standing on some of the bad times.
Yes I have PoTS. Strictly speaking it's a neurological problem that affects the heart rate. There are a lot of other things that go with it though. The PoTS UK website and the dysautonomia international website are excellent for info about it.
A young relative of mine is having a tilt table test for POTS today. She has the same symptoms as you and medics in hospital are pretty sure that is what she has but hopefully the tilt test will confirm then treatment can begin.
She has been suffering like this for two years and had several different diagnosis made but clearly it looks like it has been POTS all along. Best wishes.
PoTS is a form of dysautonomia, mainly. The sympathetic system over reacts and the parasympathetic system has not got a clue how to deal with it. There are sites, Dysautonomia international and POTS UK. It can be primary or secondary, and has about 4 different types, which can mix and match.
I have Hyperdrenergic primary type which also involves my baroreflex receptors (BP buffering and control) so when I stand still, my BP rises and carries on going. For most PoTS people BP stays withing the norms unless you also have orthostatic hypotension with the postural tachycardia. It has so many other problems associated, anything controlled by the autonomic system.
Tilt table is usually carried out along with echo, ambulatory monitoring and sometimes a holter monitor. On the groups we are getting a massive amount of new people with post covid syndrom who are being diagnosed with PoTS or some other dysautonomia.
Good luck and read as much as you can, look for specialists, POTS UK site has a list and get a referral either from first referral cardiologist or first appointment private.
Its a long process and because its a syndrome anything can be affected. Its also important that autoinflammatory and autoimmune conditions are ruled out because they can be the primary cause.
This is brilliant and amazing info. Really useful and I've got a lot more to research now.
My bp varies but generally is within normal ranges but my heartrate is constantly high (it's usually 80+ and I'm very active - an athlete competing at GB international level, so hr should be 40-60). It'll go up to 120/130+ upon standing. I've even tracked it to hit 192, I believe that would be during some form of exercise but was excessively high compared to other norms.
I'm going to keep on it with the doctors and see what I can get.
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