Anyone been diagnosed with POTS?

[Penguintears]

Since last Jan I've experienced lots of tachycardia. Mainly after eating and on standing. My heart rate goes from about 70 sitting down to 110+ standing up. This was confirmed by ECG. I saw a cardiologist who did a 24hr ECG and echocardiogram amd concluded that it was sinus tachycardia and gave me beta blockers.

I thought it was more likely to be POTS as I also feel faint/dizzy, am fatigued, get cold hands and feet, and the heart rate only increases when I'm upright, if I sit or lie down my heart immediately goes back to normal. The cardiologist was really dismissive of POTS but didn't really explain why he didn't think it was that.

He wanted me to reduce the beta blockers and then come off them slowly over the last year. I've tried and I just can't. When I come off them my heart regularly gets to 120. When I mentioned this to the GP he has referred me back to the cardiologist.

So I'm seeing the same cardiologist tomorrow. I am hoping he will confirm that it's POTS. Mainly for peace of mind but also because it means that long term beta blockers are the best treatment for this and I won't keep having to come off them.

I was just wondering how other people got diagnosed with POTS as this doctor seemed so dismissive of it, even though I have textbook symptoms.

Also, any lifestyle tips for managing the condition?

I can't give you any tips unfortunately as I've just been potentially diagnosed with POTS triggered by long Covid and am currently waiting for the test results from autonomic testing I had done yesterday.

My cardiologist is excellent, I definitely recommend him if you want a second opinion. His name is Professor Melvin Lobo - he founded a Blood Pressure & POTS Clinic and works out of Guys, London Bridge Hospital and Harley St.

www.hypertensionspecialist.co.uk/london-bp-clinic-hypertension-specialist-london.html

Watching with interest to see how you get on.

I saw a GP (locum) months ago who said they are convinced I’ve got PoTS after doing lying and standing BP & heart rate. Like you I’m fatigued, dizzy, cold hands/feet (which are blue a lot of the time) I’ve been referred to cardiology and had a letter confirming they have received the referral but It seems there is a long wait for appointments in my area. I’m a bit worried now that I’m just going to be dismissed.

I hope the cardiologist actually listens to you tomorrow, did you ask about tilt table test for a diagnosis? It’s awful you have to push so hard to be listened to.

I’m fed up of feeling so rubbish, I imagine you are too. Fingers crossed for the appointment tomorrow. Please let me know how you get on.

Thanks, I'll let you know. What I don't understand is that there is one main diagnostic criterion and that is increase in heart rate of 30+ on standing. Mine is usually 35-40 increase but both the GP and cardiologist were dismissive.

The GP said "that's not a diagnosis you want, it affects all sorts of things". Which doesn't make sense to me as being diagnosed or not doesn't change my symptoms but definitely gives me peace of mind!

The cardiologist was just brusque and dismissive and didn't have a clear reason why it wasn't POTS. So not sure if I can expect anything different tomorrow. I'm going privately so could choose who I saw but this guy has all my test results from last year so I thought it would be best to go back to him as I don't want to have to do them all over again.

To many healthcare workers, a diagnosis of PoTS often seems to go hand in hand with various personality disorders and mental health issues. So genuine sufferers can often be dismissed. As with anything of course but PoTS is currently one of the Twitter diagnoses du jour.

But I have the objective diagnostic criteria shown on an ECG. That wouldn't show up if it was due to a mental health condition/fashion!

My 15yo DD was diagnosed as part of a diagnosis for EDS. Her sit/stand test saw her go from 70 to 140 and stay there. She also faints, particularly during her period, when going from lying down to standing. Her rheumatologist called in a cardiologist for a consultation and they did a few other tests including ECGs and tilt tests.

Some people bring that on by dehydrating themselves before the GP visit.
As I say, there are genuine cases but also unfortunately a lot of overlap with other issues.

I have POTS and Long Covid. There is lots of advice on the POTS UK website.

I manage without medication by drinking 3 litres of water, having extra salt or electrolytes in my water and wearing compression tights or socks which are 20-30mmHg compression. My heart rate is under 60 lying down and around 100 standing on average, but on a bad day can be 120+ standing. At my worst last year it was 150+. Hot weather makes it worse.

Coconut water, ORS electrolyte tablets or dioralyte in water seem to help and drinking a pint and a half of water rapidly if feeling very dizzy. Other things are putting your legs up after eating, using an abdominal binder and also lying flat for 10 minutes after drinking a good volume of water until you feel better.

www.potsuk.org/managingpots/

Insist on a tilt test. And why on earth is your beta blocker script being reduced. Its not something you get better from. If anything it needs increasing as you get used to it. That said lots of cardio's do dismiss pots, and given that treatment for both is beta blockers, or ivabradine it may not be that useful as a diagnosis on its own.

Salt is apparently good for pots.

I have a diagnosis of PoTS, I also have EDS and have had a diagnosis for the best part of a decade and re-onfirmed recently via repeat tilt table test and specialist autonomic testing.

I think consultants are reluctant to quickly diagnose now in part due to the cases cropping up after covid. PoTs can resolve an isn't necessarily a permanent condition and I think the understanding of post-viral induced PoTS is very much in infancy.

Medication that affects heart rate and blood pressure should be a last resort and carefully considered. Even on both my resting heart rate is around 100 and standing easily 150 and have a very low BP on bad days. For me it is very disabling and I am very limited in my mobility. I can see why there would be reluctance to medicate if HR is closer to a normal range - such as 70 at rest.

That isn't to say a low HR means a person isn't symptomatic and ultimately that is what matters, how disabling it is and how it is affecting your life.

There is no cure so a diagnosis is only helpful to degree. My specialists are great but often if I turn up to a&e or an ambulance is called when I pass out, they have no idea what to do or about the condition. I currently take prescription low-sodium tablets (which increase blood volume), prescription compression stockings, ivabradine to lower HR and midodrine to raise BP. I'd prefer to take none of it, the side effects can be awful and it really did take years to go through the NHS to the point of official diagnosis and meds. My ECG's are most often normal and I'm not aware of one being used to diagnose PoTS so much as identify and rule out underlying or secondary cardiac conditions such as atrial fibrillation or SVT etc.

POTS UK is a wonderful resource if you need to know more OP, or happy to answer questions.

Thank you everyone for the advice.

I feel so much better on beta blockers and am on 1.25mg bisoprolol so I don't think it's that high a dose. It's my GP who is saying that I shouldn't be on medication permanently and wants me to come off the beta blockers. I'm really not sure what the cardiologist will say tomorrow, I'm kind of expecting a brush off to be honest.

I think for me it's the physical anxiety that is caused by my heart rate going so high that I find the most difficult. Standing in the shower in the morning is the worst as I can hear my heartbeat in my head and it makes me feel physically anxious like I'm about to jump off a cliff. Its like living in a body that thinks it's being chased by a murderer all the time, if that makes sense.

It also happens after eating carbs or sugary things (which I don't very often). Does anyone else get that as well?

Oh and the ECG I mentioned was that I had a basic one done at the GP and it was 70 and normal. I persuaded the nurse to let me try standing up to see what would happen and she got a bit panicky at my rapidly rising heartbeat, I think it went up to 110 that time, and made me lie down and called the GP in. So it wasn't part of the official diagnosis but was how I got the GP to refer me in the first place as before that he just kept saying that its normal for slim women to feel the way I did.

I then did a 24hr ecg for the cardiologist which showed lots of episodes of tachycardia. But he wasn't interested in POTS and just said it was sinus tachycardia and put me on the beta blockers.

So the cardiologist was less dismissive this time thankfully. He has referred me for a tilt table test at a specialist in London.

He said that essentially it doesn't really matter if we give my condition the label of POTS or sinus tachycardia, the treatment and prognosis etc is the same anyway.

He's happy for me to continue on beta blockers as they really help my symptoms. He said in his experience these conditions last a few years then improve and go away. So to trial coming off the beta blockers every 3 months or so and if I can cope without then great and if not then continue on the beta blockers.

He was very reassuring and told me I would live to 100! I'm pleased with the outcome. The tilt table test will be interesting although probably rather unpleasant!

My adult daughter as diagnosed with this about 12 years ago
She takes lot of beta blockers daily ..and can tell if she takes a dose a bit late...

Thanks for starting this thread. I’ve only heard of POTS recently and am wondering whether this could be the cause of symptoms that I’m finding quite limiting at the moment.

I feel fatigued and faint all the time. Naturally this worsens on my period and now it’s been hot. I find my heart pumping, as though I’m exercising doing simple activities like having a shower, emptying the dishwasher and going up the stairs. Can also have headaches which go when lying down. My body is unconsciously tensing my stomach muscles just to fight the feelings of wooziness. It’s like that feeling when you’ve stood up too quickly but on a lower, constant level.

My blood pressure is okish 106/60 last check and my iron levels were 10 but told not anaemic. All other levels fine. I’m a size 8 and I’m going out of my mind trying to figure out what’s causing this. I’ve even recently gone on fluoxetine just to rule out anxiety and help the fear this now causes when out and about.

I was going to ask my GP about potential POTS but didn’t want to come across as stupid or that I’ve googled it.

I’m so glad that you’ve got some resolution!

I’m glad he was less dismissive and you felt he listened to you today op. It’s good he is referring you for a tilt table test. Why London? Is that far from you? I sadly couldn’t go to London so that wouldn’t even be an option if it was offered.

I did know someone near me who went to London when she was diagnosed with PoTS, I have to admit at the time I had only heard of it in passing and had no clue about it so didn’t ask all the things I’d be asking now if we were still in touch.

Great to hear that, in his experience, people recover after a few years -gives us all hope! I’m sure you feel happier to continue with the BB & have a trial off them but that you can continue taking if needed. It’s a shame you had to have another private consultation to get to this point though. It’s horrible being dismissed when you know something is wrong. Other people don’t feel like this!

@DollyTots thats still pretty low iron and many women can be symptomatic even in the low end of normal range for iron. I would seriously consider getting some prescription strength iron and taking it for 2/3 months. You can buy ferrous fumerate online/over the counter. I’m watching a couple of iron threads, I will go and find them and link here for you.

@DollyTots some knowledgeable people on these threads

www.mumsnet.com/talk/am_i_being_unreasonable/4533835-To-think-ferritin-level-of-25-is-low

www.mumsnet.com/talk/general_health/4508650-Hair-loss-and-low-ferritin?reply=116940734

I've done the tilt table test and definitely don't have pots. And didn't find it too bad..but maybe that's because I don't have pots! I do have a low blood pressure though which is causing the symptoms. I get fatigue but that can be explained by two other conditions.

I am drinking more liquid and eating a higher salt diet.

The problem is there can be several causes each with similar symptoms but can be distinguished by tests which we can't do at home.

I'm not sure why London. I'm about an hour away so it's not too far. I'm doing it all privately so maybe it's the nearest private hospital that does the tilt test? I can't imagine it gets used that often.

@DollyTots interesting that you say you're a size 8. Apparently POTS is most common in slim women.

I'm reassured that whatever it is it isn't dangerous, it's just all about managing the symptoms. I read somewhere on one of the POTS websites that it takes on average 7 years to get diagnosed.

I feel like for me a diagnosis would be helpful in explaining many of my random symptoms and it would also be an easier way to explain to others e.g. family and work expectations. I find it stressful not having a "proper" diagnosis so I'm hoping that the tilt table will either rule it in or out definitively.

Definitely agree that a ‘proper’ diagnosis can be oddly relieving.

Thank you for the advice @Wishitwasntsohard I’ve been trying to gently get myself onto iron tablets from the pharmacy to try and help because I did think it was still low. I’ll have another read through the threads.

@Penguintears I’m just popping back to see if you’ve had your London appointment yet and see if you have any update?

I’m still waiting for my cardiologist appointment, they sent a letter to confirm they’ve had a referral and will send me an appointment nearer the time but that was 5 months ago! I’ m so dizzy today that I haven’t been able to work. A proper diagnosis really would be a relief because I think work are getting a bit fed up of random days off with dizziness.

I have POTS, along with EDS. Funnily enough it didn’t show itself majorly until pregnancy when I kept fainting. I am technically under Dr Gall but generally manage it myself with hydration, salt, compression socks and the CHOP protocol. Exercise has really helped but I was initially worse rather than better.

I have had it since a teenager but just thought I was good at fainting 🤷‍♀️
Was diagnosed in my '50s as was increasingly unwell. My heart rate goes over 170 upon standing. I manage thst with salt, water and compression leggings. However, HR recently started to spike >140 at rest so I've started beta blockers.
I think it worsened secondary to an autoimmune disease I also have.

I see this is an old thread but @Penguintears I thought it was worth suggesting using a shower stool if standing in the shower makes you overly symptomatic. It can be a bit of a "am I really this disabled?" moment at first but it's helped hugely in managing my PoTS. Never a hot shower either, since it dilates blood vessels and worsens blood pooling. Cold showers are best if you can tolerate them, otherwise lukewarm.

Have had POTs for 19 years. Ask me anything! Im a seasons pro lol