POTS advice please

[siliconcover]

Ds diagnosed with PoTs (in addtion to recovering from Peri/Myocarditis last year. He was given Ivabradine 2.5mg & has increased to 5mg. Initially helpful but this has waned. Tried 7.5mg but pulse (already very varaible & low overnight - often down to high 40's dropepd further so discontinued). Will speak to GP about Midodrine but GP frankly hopeless & blames all on 'ASD & depression'.

Current symptoms are:
Giddy, air hungry, brain fog, crashing exhaustion, poor sleep.Endless burping.
Very giddy before emptying bladder (frequently, drinking lots) feels better after.
Can see blood pooling hands/feet.

Tried: no sugar / caffeine/ whole carbs (not many). Salt makes him feel worse.
very short walks a few times a day, fresh air. small regular meals, plenty water.
tried Lansoprazole / Omprazole & OTC remedies re burping but no difference.
Going to order some compression socks (but what about lower arms/hands?)

After such a period of stress we think his parasympathetic nervous system is completely out of whack & want to support it in any way we can.

Any thoughts on any of above would be appreciated.

anyone ?

Caffeine is a weird one for some absolutely caffeine makes symptoms worse for me caffeine improves my PoTs along with a higher salt diet along with low carb portion.
I also keep salt sachets on me and when feeling symptoms will have a salt kick diluted into fruit juice.

It definitely is about trial and error on use of diet to control but I wouldn't try too many things at once.

You get a prescription for salt tablets.

Has he tried propranolol?

Propranolol is meant to help. i’m not an expert in pots but there is a huge thread on Reddit dedicated to the condition. Have a look - many active users who may be able to help.

@Scottishskifun he says salt makes him feel worse (?) & also due to not being 100% cleared by Cardio yet he cannot increase salt anyway.

@WaterWolf he has had propanolol in the past for anxiety/sleep. It worked well but I dont' know if he can mix that with his current Ivabradine?

He is desperate to go into Clearing & get to Uni (he's missed 2 whole years now with Covid, then heart failure, now PoTS) but he wants to feel 'better' first.

DD is trying to get a diagnosis. She had lots of privates tests a few years ago, no issues with heart, had heart scan, echo, and two weeks of sticky heart monitor thingy. Bloods all fine.

But.... She gets dizzy/faints every time she gets up from sitting, fast heart rate, Reynaulds, blood pooling. Queuing in heat is the pits.... As is commuting on buses and trains, often has to sit on the floor as she is young and no-one gives up a seat for a youngster.

She also has energy drinks on hand, or chugs water/salt combos, which help.

She has finally got a GP appointment as she is now back from uni so will be interested to see what they suggest.

Slow release propranolol helps some people. Compression socks are very helpful. What about adding electrolytes to water? You can get effervescent tablets to add to your water, I found these helpful.
1-2 cups of tea before midday help me a lot, any more than that and it makes me worse. I think everyone is different and it can take some trial and error to find your sweet spot combination.

I have POTS. It flares up and down but so far I’ve avoided meds. I need caffeine first thing to wake up, but have then moved to decaffeinated for the rest of the day. Upped my fluid intake significantly and use electrolyte drinks. I’ve also tilted the top end of my bed 5 inches. Have a look if you’ve not heard of this. Made a big difference for me personally although initially I was doubtful. Also compression socks.

Stress is an absolute trigger for me and flares mine up hugely, also social occasions even if I’m enjoying it so pace those now. I also have Hypermobile Ehlers Danlos which often goes with POTS. I use the Visible app and monitor. It shows what activity is triggering high HR and again that was a real eye opener. Made it much easier to pace and manage activity levels which has meant my POTS has improved. I was overdoing it and crashing before. Also gives a daily rating so I know if I need to have an easier day. Visible app monitors HRV which they think can pick up on automatic nervous dysfunction. Every POTS case is different to be honest, so it’s a case of trying different things suggested and seeing which ones work.

If he's just having salt directly then yep it's not pleasant but increasing salt in take is a dietary control measure. It might be a case of gradual increase and things like higher salt snacks - olives, ready salted crisps etc.

POTS UK website is useful.

Unfortunately it's not a case of feeling better just a case of better management but accepting it will go in peaks and flows of symptom flare up.
There isn't really a magic wand Unfortunately it's a case of trialling different things and see what helps.

Thank you everyone.
@Ownerofbagpuss Ds did get a Kardia on advice of Consultant (but it was defective & gave wrong readings that caused a lot of stress) so I'm a bit nervous about another app given the probs before. He has a fitbit.
His HRV is high - it can be 46 overnight then jump to 135 for an hour then back again all whilst asleep. Re 'pacing' yes definately. I think the hardest thing is that because he cannot predict it he cannot do anything. Most days a shower is enough to wipe him out. some days he can, eg get on a train but then wiped & has to come home. He did manage a weekend away (lots of planning & sitting down) - that has been the most since last October. Hugely frustrating for him.

@Scottishskifun he won't eat anything with salt at all due to previous cardiac issues. Many things that he was told re that - dont' drink too much water, no salt etc are the total opposite of PoTs recommendations which is really tricky.

I DO appreciate that it is a case of trialling some things to see what works for him but I wondered if anyone had tried other meds too. I can ask about Propanolol. Has anyone used Midodrine?

Will he eat crisps or salted peanuts? Any snack type food like that? When my HR bottoms out I have to eat junk food to get it back up. Not ideal but better than feeling like I’m going to collapse.

it’s not a fun condition for a young person at all.

@Holmints - no, he has removed all easily discernable salt from his diet after heart failure last summer (now out of that but ASD thinking / PTSD effect)

I was looking at Supracore leggings. It occured to me that, as a young man, it might not be good fo 'bits' to be compressed (exH had fertility issues:hereditary)

Has anyone heard of Dr Gupta in York?

Visible was recommended to me by many on POTS forums. Have a Google at their website. Was initially developed for Long Covid, ME/CFS etc by somebody that has this condition. The whole point of Visible is it’s set up for pacing, not activity like Fitbit/Apple Watch etc.

After 5 days of monitoring, it gives you a personal pace point limit. You then try to stay within those points to avoid crashing. Unlike Fitbit etc, it monitors all the time so is very accurate. Really excellent team support with the app, most people on the team including the developer of Visible, have chronic illness like ME/POTS etc so really understand. You also have the option to include your data for chronic illness studies with the likes of Oxford University/Mount Sinai and other medical research institutions. I’m in one at the moment and important I think, as my GP explained to me, it’s still a condition they’re learning about. Showers can be particularly point heavy and it’s amazing by how much. Also some days my points will get eaten up faster doing exactly the same thing, so I know it’s a day to take it easy. It alerts you if you’re in the exertion range too much. It’s taught me that by doing things a slightly different way, you’re able to use less exertion/pace points. Evening check in has a list of symptoms you grade by severity that day and morning check in scans HRV and gives stability reading for the day. It’s been a real game changer for me personally, and I’m now able to manage activity around flares better and avoid being in a constant state of crash and boom.

@siliconcover definitely see if you can get him to speak to the cardiologist about it and the salt.
Avoiding it completely won't be helping not with POTS. Him saying it makes him feel worse might have a element of fear given previous advice and heart concerns.
Would he eat Thai or Chinese food? Typically its higher in salt.

Has he tried caffeine in the mornings?

Part of it is medicine the other part is dietary control (most drs will want to see dietary attempts first before medication) but really he needs to feel comfortable trialing things. Unfortunately mostly left to work it out on your own with POTS. He can be fitted for compression socks by the NHS. They might not be stylish but they do help.

Things like how he gets out of bed also worth examining (it's a slow process for me to not trigger it).

Here’s the link. You do have to pay for the monitor (worn on my wrist like a watch, also comes on an armband) and there’s a subscription for the app, but worth every penny in my case.

https://www.makevisible.com/

i understand the frustration when you’re unable to do things, it can be very debilitating x

Also not seen Dr Gupta in York myself, but he is often discussed on POTS forums. Everyone says he’s brilliant. Agree also with PP who said POTS UK website is very informative & helpful. Hope your Ds can make life a bit more bearable with this, awful having it so young alongside the other conditions x

I have POTS but thankfully well controlled at the moment.

Dr Gupta is meant to be excellent.

Midodrine worked well for me and controlled me well enough to do the CHOP protocol which long term gave me great symptom control but short term I felt worse before I improved. Now I notice if I have periods of inactivity then it flares up again.

I use a sunflower lanyard on public transport and ask politely for the disability seat/ask in the general vicinity if anyone minds letting me sit as I have a heart condition that causes fainting and people are very accommodating.

I think Ds has been extremely unlucky - his initial heart failure condition was poorly managed (had 4th MRI last week, waiting results but his ejection fraction has dropped each time despite Dr saying: 'all fine just anxiety') No cardiac stress test. Because he felt so physically ill he was not able to do very much so deconditioning plus a huge 'load' of vaccinations & thus developed PoTS.
He waited a year to see a 'cardiac physio' who told him to do 1 step stair & chair yoga. I'm aware that lack of exercise will worsen it but it's so hard when he stands up and just about passes out. He's still in bed as we speak (asleep)

I will look up the CHOP protocol & supacore compression leggings. It might be worth speaking to Dr Gupta. We have a dx of Pots (via Spire Dr) but our GP 'won't accept it' & only GP who gives 'long covid advice' Ds is fairly afraid of & wont' see so we need to work this out on our own so I really appreciate talking it through here and the suggestions that are being given to try. Thank you all x

I had midodrine, made me swollen like a balloon and gave me head itching and migraines. I had ivabradine too, but it was cancelled by my other cardiologist . Am I allowed to post links here? There’s a brilliant cardiologist in York who specialises in POTS. He’s amazing and I highly recommend him.

I have Pots diagnosed at The National. hospital Queens Square under Prof Mathias now retired but the autonomic unit is world famous.NHS but also private.Has your DS been seen there?

@Ragruggers No. Ds was initially put on 1.25mg Bispralol only.- it didn't help. Ds told 'all in his head'. Saw a Senior NHS Cardiologist via Spire who suggested Ivabradine instead. GP refused to prescribe (or accept the diagnosis but wanted 'one of our nurses to re-check'). NHS Cardiologist also refused to contemplate it but increased Ds Bisopralol as 'it covers a wider range of arrhythmias' (that he said Ds defo didn't have). After a further 2m NHS then prescribed Ivabradine. It worked to start with then after 1m GP went on holiday & left Ds file still marked 'do not prescribe' so we had a 2 week gap. Since then it's not been as effective (weirdly). We are in Scotland. Ds can't even get hold of his notes ('we don't have to follow GDPR if we are busy') It's very poor. I am hoping latest MRI will be reassuring then to make progress on the PoTS. I've been reading Dr G's page just now & what he writes about Gastrocardiac syndrome seems sensible.

Like a PP said, I felt worse when I had long periods of inactivity. My POTS began after surgery which led to a long period of inactivity. Think measured movement & activity within limits has helped. My blood pressure is nonexistent and I struggle to get it into the normal range. It’s a bit of a juggling act.

Have you looked at the PoTs website as there are 3 (I think) different subtypes that respond differently to different treatments.

On diagnosis I was given ivabradine and a steroid but I didn’t actually need the steroid. I also don’t need a huge amount of salt.

Has he tried swimming? It’s the one exercise I can manage as you’re flat rather than upright. I’ve been advised to try and exercise as much as possible especially my core to get the blood pumping well.

Hace you considered anything like acupuncture? I haven’t had it for PoTs as such but it has helped me feel more balanced in general both physically and mentally.

Have you looked at the PoTs website as there are 3 (I think) different subtypes that respond differently to different treatments.

On diagnosis I was given ivabradine and a steroid but I didn’t actually need the steroid. I also don’t need a huge amount of salt.

Has he tried swimming? It’s the one exercise I can manage as you’re flat rather than upright. I’ve been advised to try and exercise as much as possible especially my core to get the blood pumping well.

Hace you considered anything like acupuncture? I haven’t had it for PoTs as such but it has helped me feel more balanced in general both physically and mentally.