Recently diagnosed with postural orthostatic tachycardia syndrome (POTS) – looking for advice/experiences

[Wittyapple]

Recently diagnosed with postural orthostatic tachycardia syndrome (POTS) – looking for advice/experiences

I’ve been diagnosed with POTS after around two years of cardiology testing following a seizure.

I’m feeling a bit hopeless at the moment and was hoping to hear from others who’ve been through something similar.

A bit more background: I also have Hashimoto’s / underactive thyroid, and asthma. (not sure if that is relevant)

It feels like my body is overreacting to everything — I can’t walk down the street without my heart pounding and sweating profusely.

My main symptom is tachycardia, as confirmed by testing including a tilt-table test, ECGs and a Holter monitor. I also get pins and needles in my hands and feet and struggle to stand still without becoming symptomatic.

I had a GP appointment today as the cardiologist recommended referral to the POTS clinic (London) on discharge. The gp did the sit and stand test and logged my HR/ BP. They confirmed POTS, however, said the clinic is likely to refuse the referral. They also said they wouldn’t recommend medication as my blood pressure is normal and it could increase BP.

My heart rate on sitting was 90 bpm, and goes up to 135 / 140 on standing, with similar results in all tests. POTS has been confirmed, but it looks like there’s nothing that can be done other than lifestyle measures...

I already drink plenty of water (no alcohol or caffeine), don’t smoke, have increased salt intake and will be trying compression garments. Is there anything else people have found helpful?

I assume they have ruled out Addison’s disease? I had similar symptoms and it was Addisons.

My postural symptoms have improved greatly with Fludrocortisone. I also follow my salt hunger, and trust my body knows what it needs. On bad days I can eat a whole box of oxo cubes or multiple tins of anchovies.

Best wishes to you, and hope you get the help you need soon.

Same situation but can’t try medication due to kidney disease and prior stroke - just having to maintain 3l minimum a day and extra salt , having my compression tights fitted next week but can’t use the abdominal binders as I have a stoma. My BP is dropping on standing and is low at rest so not conventional POTS really

One of the challenges with POTs is you become really de conditioned physically as upright activity is too stressful on the body. I discovered one recommended activity which is the recumbent bike at the gym. It’s a bike but has low orthostatic load as you can lean back on the back rest.

I found a really inspiring piece of research about using the recumbent bike to build cardiovascular fitness to the point that 80% of participants no longer met the criteria for POTs. It involves doing 3 minutes on the recumbent bike a few times a week. Increase by 3 minutes the following week. And the next. Until you’re at 45 minutes.

I’m at 4 months on this protocol and my hr is generally below 100 on standing now. Keep doing the 45 minutes 3 times a week at an easy pace. I think it works because you teach your nervous system that physical activity is ok, and you’re also enlarging your heart and Building your cardio base.

The key is to keep your pace really easy on the bike. It’s tempting but counter productive to go faster. I wear a hr monitor so I can track my hr and it’s generally below 110 now on the bike. You have to go really really easy and not push it all. I really enjoy this activity as I listen to an audio book. You could try that for a few weeks and see if it works for you?

Not diagnosed with POTS, this was ruled out, diagnosed with inappropriate sinus tachycardia which is similar… My resting heart rate was over 100 when sat down and would go up to 180/190 when standing.

As others have said, lots of fluids and lots of salt.

My blood pressure is low to normal, so I was not a candidate for beta blockers that they would normally use as first line for POTS. However, ivabradine has been fantastic. GPs can prescribe this as well as cardiologists, and manage the dosage.

I don't have POTs but do have a respiratory condition, on immune suppressants, always had lowish BP etc. What PP said about deconditioned fitness is very true.

The more activity you do, the body will adapt and get more efficient at getting blood and oxygen around. When you start off it's much more calorie intensive, but as the whole system strengthens (which it will naturally do because the body doesn't want you to burn too many calories unnecessarily!), it feels easier, and is easier.

The difficulty is getting started as what we think we can do in our head isn't the same as the body can do yet. I was much fitter but recently lost it all and now it feels like a mountain to climb. My heart will pound from walking.

But it's as simple as taking the base line and adding 10 minutes a day. The body will tell you when it's ready to go up.

I have POTS - most probably. I have my own BP monitor and was able to 'diagnose' myself. However my GP has referred me for a formal diagnosis. The wait is over a year! I have a telephone appointment in December.

In the meantime, my ADHD psychiatrist (POTS and ADHD are comorbid) has told me to have a low dose zinc supplement and have electrolytes drinks and wear compression stockings. I haven't bothered with the stockings but as an experimented I did try not having the electrolytes for a day or two and I felt awful, so tbey definitely help.

My systolic goes sky high, and my diastolic drops like feck. My cardiologist actually says it was likely the covid vaccine that brought this on with me. I had notoriously low blood pressure before this, often not tolerating medicines for my essential tremor due to the drop in b.p so in my case it's pretty hard to treat.

My consultant actually recommended putting the stress on my body, do more when you feel like shit, and rest a bit when you feel good. I suppose it helps the mindset if nothing else. Which is exactly why you see so many munchie grifters claiming to be completely disabled by it, as they literally sit on their arse all day and are unconditioned.

I had IST during COVID times. POTS also ruled out. Heart racing on minimal exertion. I also went into fast AF at one point. I was given Propafenone which gave me my life back, then had an ablation and was swapped to low dose bisoprolol which I remain on to this day.
Horrible times. Still get palpitations now but told of no concern.

thank you for the well wishes. I have never heard of Addison’s disease, but I’ll definitely look into it.
its funny I’ve always avoided too much salt because a lot of my family have high blood pressure, but I definitely need to listen to my body when it’s telling me I need it!
I might have to try an oxo cube now

This is very interesting! I did ask the gp about improving cardiovascular health and was directed to the pots website, but this sounds like something I’d stick at.

Thanks everyone, I was feeling a bit silly posting this, was a bit emotional earlier but I’m glad I did - loads of good advice here!

Yes learning about the recumbent bike and having this simple and easy to follow plan has been a game changer for me. I also added strength training using the seated machines at the gym - focusing on the lower body initially, as that apparently helps with venous return to counteract blood pooling in the legs.

@Wittyapple how are you doing with everything?

I've been looking into POTS a lot lately as have always had a number of the symptoms and am sort of putting the pieces together. I started on some new medicine (a stimulant for ADHD) and it seemed to set off a lot of fatigue, brain fog and palpitations. As most of the recommendations seem to be around lifestyle I am trying to add in a few elements and actually even a pinch of salt in a morning glass of water is helping as well as lying down for ten mins to 'reset' without telling myself I'm being lazy! Compression stockings next I think. Anyone have any recommendations?

The Pots UK website has a lot of information and a list of private cardiologists who specialise in Pots. My experience with 2 NHS cardiologists has been a very big waste of time and quite medically gaslighting, a private one was amazing but unfortunately expensive.