Question about POTS

[Upsidedownfrown]

I'll start by saying that of course I will be making an appointment with my gp and that I do not expect a bunch of strangers on the internet to diagnose me but for those of you who suffer with pots or know someone who does, would you mind answering a few questions/tell you about me?

For quite a few years now I've experienced vision greying if I stand up too quickly which I thought was just normal. This has definitely got much less frequent. I had a 24hr tape a few years back due to palpitations. The tape noted I have frequent ectopics but stayed in sinus rythmn throughout. I had a heart scan which showed a structurally normal heart. So I got on with life.

I'm often aware of my palpitations but they don't bother me as they are so normal. Over the past couple of years I've suffered badly with fatigue. Its really affecting me the past month or 2. At the weekend I slept at least 8 hrs each night but slept 5hrs during 2 naps on Saturday and 3hr nap on Sunday but I never ever feel like I've slept. I work part time and by the weekend I literally have zero energy. Its an effort to stand up to wash my hair sometimes. GP told me I had anxiety and then that I was depressed. I went for cbt and counselling and the practitioner was quite confident I was not anxious or depressed. I had bloods done a few times which are always normal. Iron fine, thyroid fine, etc.

I've noticed that my palpitations seem to be postural. My resting hr is anywhere between 68 and 78 depending on how long I've been resting and whether I'm laying or sitting. When I stand up, one of 2 things will happen. I will either get a bad run of ectopics (every 4th or 5th beat) for 5mins or so or my hr will whoosh up above 100 and will eventually come down a little but certainly not back to my resting hr. I never get noticeable palpitations or ectopics at rest. I also don't get them when actively exercising. Only on cool down. Its almost like my heart gets confused when it needs to change pace.

I do have hypermobility (not formally diagnosed but scored 5 on Beighton during physio for repeatedly spraining my ankle) which I heard is common with pots.

I also can't have normal local anaesthetic at the dentist. I have to have one without adrenaline. I used to be fine with it but a couple of years ago I was having dental work done and it had to be abandoned as I was twitching so much in the chair. I couldn't drive home as my leg was jumping and arms shaking so a friend had to come collect me. It lasted over half an hour and then I was wiped our afterwards.

Does any of this sound familiar? Can the big rise in hr upon standing not happen every time? I'd like to go to my gp armed with a bit of insight so I can at least ask for things to be investigated or ruled out rather than being brushed off as being depressed or being tired due to having kids (youngest is 10. It's not like they're tots). I've not felt like myself for a few years now and I would love to start to feel a little more normal again!

Hi, my son is undergoing tests for pots.
We are waiting on an appointment for a specialist hospital to have the tilt table test.
He gets dizzy almost every time he stands up from either sitting or standing, blacks out very regularly and and he has said his vision greys on his way back to normal. He has palpitations, weakness, strong headache for a short time after an episode as we call it
As he stands up his blood pressure flys up through the roof!

When you go to your gp explain your symptoms they should do your blood pressure while sitting and after a while as you stand up too.

They will probably offer a ECG too, my sons was clear. But he does have a slight heart murmur which after a scan is nothing serious.

At 16 he's training to be a police officer! He may have to change career paths, as the nickname pots the nuisance syndrome. He may never be able to drive either unless it gets better with age.

Have you tried doing the poor man's tilt test? Try that a few times and see what your heart rate does. I'd insist on being referred to your nearest pots clinic for testing.

@Natkjdcjw

Hi, my son is undergoing tests for pots. We are waiting on an appointment for a specialist hospital to have the tilt table test. He gets dizzy almost every time he stands up from either sitting or standing, blacks out very regularly and and he has said his vision greys on his way back to normal. He has palpitations, weakness, strong headache for a short time after an episode as we call it As he stands up his blood pressure flys up through the roof!

When you go to your gp explain your symptoms they should do your blood pressure while sitting and after a while as you stand up too.

They will probably offer a ECG too, my sons was clear. But he does have a slight heart murmur which after a scan is nothing serious.

At 16 he's training to be a police officer! He may have to change career paths, as the nickname pots the nuisance syndrome. He may never be able to drive either unless it gets better with age.

I hope if it is pots it resolves with age. I read that when it starts in the teen years it is more likely to resolve by itself. Fingers crossed for your son!

@RoobyMyrtle

Have you tried doing the poor man's tilt test? Try that a few times and see what your heart rate does. I'd insist on being referred to your nearest pots clinic for testing.

I've done the standing test myself a few times over the past couple of days at various times of the day. The worst was when i woke up. Im dizzy every time I get up after a night I'm bed. Resting hr was 68 and at 1 min it was 116, 5 mins 104 and 10mins back down to 92.

Other times I've done it, it's been variable. I've had a sitting up resting of 79 and it shoots up to just below 100 and stays there for a while but eventually gets down to mid 80s...other times my hr stays within about 10bpm of resting but every couple of beats is an ectopic followed by a huge make up beat. So it's not every single time but u can't work out what is different when it does rocket. Its seems random.

I used to get that greying out thing where you have to sort of feel along the wall if you were silly like me and carried on walking thinking this was normal. I don't get that often now. My main things is the fatigue now. Its shit. I'm just set in my head that I'm going to have to carry on whinging to my gp for even more years and I just don't have the energy.

Look up hypermobility EDS as it frequently goes along with PoTS. Your symptoms sound familiar to pots. There can be issues with local anaesthetic with EDS, but normally it not working.

My sister has been diagnosed for 15 years and a lot of what you described sounds familiar. There are various Pots support groups on Facebook that are worth joining because there is a woeful lack of knowledge amongst the medical community.

(Interestingly, pots is emerging as part of Long Covid - including among medics - so anticipate this becoming much better known in years to come.)