Heart rate 150bpm on standing

[iheartme]

My normal heart rate is 60bpm when lying, can go up to 110 when sitting up but normally in the 90's however when I stand up it jumps to in the 150's, sometimes 170's then obviously higher once I start walking etc.

It's long been dismissed as normal because my average heart rate over a 24 hour period is normal - obviously because I'm lying down sleeping and sitting for over 12 hours per 24 hours.

Does anyone else live like this? I honestly can't do much because I'm so dizzy.

That sounds like POTS to me. Is this a new thing for you? It can be Covid related.

Yes I have this. I'm convinced it's POTS but have seen a cardiologist and he dismissed it. Did a 24hr ECG that should tachycardia so he diagnosed me with inappropriate sinus tachycardia and I have beta blockers. I feel so much better for them. I'm still convinced I have POTS but as the treatment is the same as for tachycardia I'm not going to bother arguing with the consultant!

It's worth seeing your GP and getting an ECG.

@bunfighters not new. Used to pass out as a teenager, no other symptoms though. 6 years ago had chest pain and the constant dizziness started.

@MerryPoppings I'v had an ECG and heart scan. Heart scan in two different countries one found regurgitation of the valves and some other minor issues the other scan showed only a PFO.
I just seem to be on a pathway of a holter monitor every 6 months to be told the average HR is normal and I'm too young for medication (under 30).

Push for a tilt test and beta blockers - POTS is most common in under 30 females so you are the exact right age for medication!

@titchy they keep mentioning a tilt test but then fobbing me off with a holter monitor. Last appointment I said I wear my own HR monitor when I'm wearing the holter monitor so can see exactly what's going on and why the average is normal. He made noises about a tilt test. Then letter comes a few weeks after the monitor saying the average is normal and no mention of a tilt test!!

I have POTS, and would suggest asking your GP or cardiology (if they refer you) for a tilt table test to test for it. ECG won't show POTS and a heart scan wouldn't either ( though it is always good to rule out other things). I'm early thirties and have been medicated for POTS since well before my 30's but you do have to push and it does take time and not all doctors will have knowledge of it, which can be frustrating. I have Ehlers-Danlos as well and the two often go hand in hand.

You can do a 'poor mans tilt table' test at home or ask a GP to do one and see the results with a view to a referral.

It would also be very much worth asking the GP to do a full blood count, things like low folate and b12 can mimic symptoms of POTS and would potentially cause dizziness. I would also recommend checking your blood pressure at home with a monitor when symptomatic, you can pick them up pretty cheaply, or monitor your HR using an apple watch or fitbit or similar. Going to the GP armed with the data will help your cause.

@dontgobaconmyheart I'm under the cardiologist but they just keep telling me the average is normal and they wouldn't give someone my age life long medication.
My folate and iron levels are high as I'v had an infusion and take 5mg folate tablets.
GP has done the poor mans tilt test and said it wasn't normal. Every time I'v been to the GP and mentioned my heart they want to send an ambulance as my pulse is so high.
I'v just started wearing my Apple Watch this evening and straight away it went 60bpm lying to 170bmp. Consultant scolded me for wearing it last time.

Consultant scolded me for wearing it last time.

Do you have several months of your recording data? If your GP agrees that you need a tilt test then perhaps it's the CCG that is reluctant. I'm wondering if one way to present a case would be to present 2-3 months of data and describing the impact of it. If you're dizzy and tired I'd think this has a substantial impact on you and interferes with the activities of everyday living.

@EmbarrassingHadrosaurus unfortunately I don't. The last time I wore it was September last year as that's when I last had the holter monitor last. It does show the same heart rate range as tonight but with HR falling to 42 when I was sleeping. I might make an effort to wear it every day though. I'v described the impact that it has on me, I can't stand in a queue or cook because I pass out. Constantly looking for a seat when I'm in shops. Can't really do any exercise like running because then I'm easily topping 200bmp. They don't seem to care because it's nothing sinister.

Oh I do have recordings from a day in November 2020 too, range of 52 to 192.

Yes this sounds like POTS. I have it too.
You need to be referred to a specialist although there aren’t many around.
Pots tends to be more common in hypermobile bendy people - Ehlers danlos syndrome. In addition mast cell activation syndrome can also feature alongside these too.
Best of luck xx

Make sure you drink enough fluids and have lots of salt, swimming is good exercise too.
I’m the same and can’t run! I’m better walking than standing still. Similarly have v low resting heart rate.

I might make an effort to wear it every day though.

Can you download the data regularly and then present it?

What does POTS charity recommend?

www.potsuk.org/

Although they're online, are any of these groups in your region?

www.potsuk.org/events/pots-uk-online-peer-support-groups/

I've just bought an alivecor kardia mobile. It's a 6 lead ECG that connects to your phone. Lots of portable ecgs around, but this one is validated and approved by the NHS, so if you take a recording at home it is accepted by your specialist as valid clinical data. Have a look into it - it might help you gather the evidence you need. I have it to record SVT data.

@Namechange600 I had wondered POTS but I'v seen a different cardiologist every time and none have mentioned it. They make me feel like it's no big deal to have a heart rate jumping up like it does.
I do drink a minimum of 2L water per day as that was what I was advised by the first hospital.
I obviously just need to be more direct with the cardiologists.

@EmbarrassingHadrosaurus thanks for the links. It's my DHs old Apple Watch I'm using so it's all linked to my phone. The consultant tried to tell me it wasn't accurate but I'v also worn a polar watch which gave the same result.

@LikeABreathRipplingBy

I've just bought an alivecor kardia mobile. It's a 6 lead ECG that connects to your phone. Lots of portable ecgs around, but this one is validated and approved by the NHS, so if you take a recording at home it is accepted by your specialist as valid clinical data. Have a look into it - it might help you gather the evidence you need. I have it to record SVT data.

I'm very entertained that they have Valentine offers for these gadgets.

store.alivecor.co.uk/products/kardiamobile6l

Lots of cardiologists apparently don’t believe in pots. Or aren’t interested as it’s not going to kill us, only make our quality of life pretty bad. There’s only a few specialists. There are some good Facebook groups if you’re on there.

@Namechange600 I showed my midwife my watch recordings yesterday and told her I thought it was pots. She said she'd heard of it because a colleague had a fight to get a diagnosis. She's going to get my obstetrician to contact cardiology so hopefully I'll get an appointment to tell them they need to rule out pots. If not I looked on the pots website and there's actually a specialist not too far away so I'll pay to go private.

[quote iheartme]@Namechange600 I showed my midwife my watch recordings yesterday and told her I thought it was pots. She said she'd heard of it because a colleague had a fight to get a diagnosis. She's going to get my obstetrician to contact cardiology so hopefully I'll get an appointment to tell them they need to rule out pots. If not I looked on the pots website and there's actually a specialist not too far away so I'll pay to go private. [/quote]
I'm so pleased to read that your midwife is being supportive in obtaining a referral for you with specific requests for a rule out.

It would be a shame if you had to go private although it's understandable given your range of symptoms and the impact on your day-to-day activities.

I went private for a diagnosis. If you are near London can recommend dr Gall at kings college hospital- he is amazing

@iheartme how are you now ? Im going theough the same x

@MerryPoppings my gp has offered me a beta blocker caleld bisoprolol. Seeing him on Tuesday regarding this medication. What symptoms did the beta blovker help with? X

Compression socks or leggings can also help - I was going to say why but I've forgotten, check Google, sorry.

As pp, up your salt level a bit and increase water to approx 3 or 3.5 l daily, this has helped me with POTS but like many before took years to be taken seriously and get a tilt table

@70sDuvet are u on any meds? Xx