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POTs is there anything a GP can do?

9 replies

Gruntsandgroans · 24/10/2023 23:55

I went to my GP in May with a host of symptoms. She agreed that it is most likely POTs, took bloods that were clear, did an ECG that was normal and referred me on to cardiology. She did the whole lie down take my heart rate, make me stand up and take it every few mins, thats what made her say POTs. The wait time here is a hefty 2 years for cardiology non emergency. In the mean time I upped my water intake, added those hydration salts to water, tried compression stockings, nothing really made a difference. Once the warmth of the summer was over my symptoms really settled down and I was OK with waiting for my referral. The past two weeks though my symptoms are back with a bang. My heart is all over the place, I am breathless, I nearly blacked out standing chopping veg for dinner tonight. I am knackered, I feel sick, I had a wee pity party this evening for myself because it is just so shit at the mo. Can anyone tell me if it is even worth making a go appointment again? I have to pay here for GP apps, for blood tests, for ekgs so tbh if I am just going to have that done and be sent on my way I won't bother. Is there anything the GP can prescribe to actually stop my heart being such a fucking drama queen? Especially when I am not actually diagnosed with anything yet.

OP posts:
scoobydoo1971 · 25/10/2023 00:02

I have vasovagal dysfunction (a sort of POTS) due to severe ehlers danlos syndrome, and low blood pressure (amongst a long, long list of medical conditions that blight my life). I would look up the Beighton test on google and do it in front of a mirror, or ask someone you know to assess you against the criteria. It would be worth going back to the GP for a referral. You can buy a heart monitor kit online to compare your pulse and blood pressure laying down to standing up. Check your iron levels for starters and thyroid via your GP, and make sure you are super hydrated. I get dizzy and white out vision if I am low on salt or water.

Gruntsandgroans · 25/10/2023 00:11

scoobydoo1971 · 25/10/2023 00:02

I have vasovagal dysfunction (a sort of POTS) due to severe ehlers danlos syndrome, and low blood pressure (amongst a long, long list of medical conditions that blight my life). I would look up the Beighton test on google and do it in front of a mirror, or ask someone you know to assess you against the criteria. It would be worth going back to the GP for a referral. You can buy a heart monitor kit online to compare your pulse and blood pressure laying down to standing up. Check your iron levels for starters and thyroid via your GP, and make sure you are super hydrated. I get dizzy and white out vision if I am low on salt or water.

I actually did that test on myself only a few weeks ago because I have joint pain. I wouldn't fit the criteria. Ive had my thyroid and iron levels done quite a few times over the past few years due to the joint pain and tiredness. They've come back clear everytime. When I saw a rheumatology physio he memtioned that I was very flexible but didn't do the test you mentioned. I've also had xrays and an mri on my hips due to pain but nothing has shown up. I'm on a wait list to get steroids injected into my hips to see if that helps there. Right now it's the racing heart, Dizziness and breathlessness that is my biggest problem. Its awful feeling like I just can't catch my breath properly.

OP posts:
TSJ19 · 25/10/2023 00:43

Hi I have POTs. I also have long Covid. I take Bisoprolol to help with my fast heart rate.
I also get a lot of chest pain and dizziness. Sometimes it feels like something is sitting on my chest and feels like I can't take in a full breath.

ErroneousEntity · 25/10/2023 10:19

Unfortunately there are no licensed medications for PoTS, so all the pharmaceutical treatments are off label and need to be prescribed by a consultant, at least initially.

If you already pay for GP appointments and tests, you would probably be better off spending your money on a prIvate PoTS specialist. Often standard Cardiologists aren’t the best, Electrophysiologists tend to be more PoTS aware and in my case I was actually diagnosed by a General Internal Medicine Consultant.

A GP should rule out other potential causes though, so full bloods to include thyroid, cortisol/adrenals, vitamin deficiencies - especially B12, Vit D, Iron and folate.

If your BP is normal, try upping your salt intake. Check the sodium levels in your hydration salts, as some aren’t great for potsies. I use PH1500 dissolvable tablets (I buy them from Amazon) since my consultant pointed out the standard sports ones I was using initially were relatively low in sodium. Salty snacks can be useful to kind of scaffold yourself if you know you are going to need to stand, salted nuts, pretzels, crisps etc. Keep a bottle of water plus electrolytes with you at all times.

Waist high compression is more effecttive than the stockings, as blood pools in the abdomen as well as extremities also the compression level needs to be quite high, my ds and I wear 20-30mmhg, which I think is the highest non-medical grade. Ideally you need to put on your compression garments before you get out of bed, as once your feet are on the floor pooling starts and you need to stop it before it starts, iyswm. Take your time getting up, wake, hydrate by sipping electrolytes, put on compression, then gradually move from lying to sitting feet up, sitting feet down then slowly stand.

Small intakes of food a day rather than large meals and cutt8ng down on carbs can help too.

Read up on pacing and spoon management, which is useful for managing your energy and also think about modifying how you do things. Eg, sitting to the table to chop veg/prepare meals. Try to keep moving over standing still if you can. I may look odd walking in circles and going up and down on my toes in shop queues, but at least I’m not fainting. Look up PoTS counter manoeuvres and try to incorporate them. Eg Clenching and unclenching fists, toes lifts, clenching buttocks! All small things on their own but they can help avoid faints and reduce horrible pre-syncope symptoms.

Have you been to the PoTS UK website? There is lots of good advice on there. Another good place for info (recommended to me by my consultant) is Dysautonomia International.

There’s a chance you may be experiencing what’s known as ‘The October Slide’ which a lot of Potsies get (the past three weeks have been awful for me symptomatically). You just recover from the heat of summer, get a couple of weeks respite in September, then your PoTS symptoms ramp up again. Lots of theories about why this happens, including a drop in Vit D, fighting off the onslaught of inevitable Autumn/Winter viruses, leaf mould, changes in air pressure, artificial heating etc. No-one really has the answer and in truth it probably varies from person to person.

Cakeandslippers · 25/10/2023 10:26

Sorry you're suffering, a friend of mine has severe pots and raves about PoTS UK. I think they have the option to phone / chat / email to experts - might be worth ringing to see what they think. I hope you get some help soon.

burntoutnurse · 25/10/2023 10:35

Sorry you're suffering.

It was recently suggested I have POTS after an awful summer of being unwell. Awaiting cardiology referral. Who knows how long that will take,

In the mean time, I've upped my salt in take. Hydration tablets once or twice a day. Changed my diet to a healthier one.

But the main thing I introduced was exercise, I HATED it before, still do but it's making a massive difference...

I started with 5 mins on the treadmill, that first time was horrific, I was sick and dizzy for about 3 hours afterwards, but I persisted, at the suggestion of my GP. To get my resting heart rate lower,

I'm now up to an hour every day, sometimes I do feel dizzy and light headed afterwards or during, I have a hydration tablet drink with me when I'm on the treadmill,

Of course i still have days where my HR is high and I feel awful, but it's much more manageable,

If I'm overtired it's worse (I work nights and also suffering peri insomnia atm)

I take a baby aspirin daily too but not sure if that's helping at all I'm also at an increased risk of dvt

goldennavy · 25/10/2023 10:45

I have PoTS too, and Long Covid.
It's so disruptive to life but I find being positive, facing the fact I have it and resting when necessary helps. The LC clinic told me 'you may look well outside but inside you're not', and that gave me the nudge to look after myself instead of pretending I was ok and trying to carry on which just made me sicker.
My heart goes out to all of you suffering. It's an invisible disability.
Take care all.

ErroneousEntity · 25/10/2023 12:03

@burntoutnurse have you heard of the CHOP modified Dallas Protocol for PoTS? It’s a progressive exercise protocol for PoTS patients to build up muscle strength and fitness and therefore skeletal pump and stamina.

It can be adapted to suit individual needs and some people have found it really helpful as a working guide.

For those who have lost a lot of muscle mass, working with more floor based exercises is helpful to begin with as, with PoTS, upright exercise is likely to just keep ramping up sympathetic activity and adrenaline, worsening symptoms and exhaustion and may not be sustainable. If you have room, a rowing machine or recumbent exercise bike are also excellent options for building muscle without having to deal with the challenging haemodynamics and autonomic elements.

Also, there are a whole course of yoga exercise videos on the PoTS UK YouTube channel.

Managing POTS through Exercise | Standing Up To POTS

Many people with postural orthostatic tachycardia syndrome (POTS) feel miserable all of the time.  The idea of exercising is almost insulting when you are highly symptomatic, and actually exercising feels like an impossible task.  The fatigue from POTS...

https://www.standinguptopots.org/livingwithpots/exercise

burntoutnurse · 25/10/2023 12:09

ErroneousEntity · 25/10/2023 12:03

@burntoutnurse have you heard of the CHOP modified Dallas Protocol for PoTS? It’s a progressive exercise protocol for PoTS patients to build up muscle strength and fitness and therefore skeletal pump and stamina.

It can be adapted to suit individual needs and some people have found it really helpful as a working guide.

For those who have lost a lot of muscle mass, working with more floor based exercises is helpful to begin with as, with PoTS, upright exercise is likely to just keep ramping up sympathetic activity and adrenaline, worsening symptoms and exhaustion and may not be sustainable. If you have room, a rowing machine or recumbent exercise bike are also excellent options for building muscle without having to deal with the challenging haemodynamics and autonomic elements.

Also, there are a whole course of yoga exercise videos on the PoTS UK YouTube channel.

Thank you! I will take a look,

I haven't been able to do strength building with my arms as I had septic bursitis in my elbow last year and really struggling with pain still but will have a look

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