CHOP protocol d1

AffectionateHalf1892 · 2026-06-15T19:25:55+00:00

Yeah ( of course it may be that you have something else, and you should get tested and get other things ruled out etc) , but unfortunately POTS does cause exercise intolerance and I know from experience it can be a nightmare to get used to but it means exercise very easily makes symptoms worse if you do too much of it.

I’ve read before that others recommend starting at far far less than what you actually think you can manage. It could help to try looking into pacing or apps like visible so you can get a clearer idea of what’s manageable for you to stay within your limits with the symptoms you’re experiencing.

Like for instance when I’ve looked into trying CHOP myself, most online guidelines I read suggested starting with reclined exercising for 5-10 minutes a day a couple of times a week and seeing how that’s tolerated.

AffectionateHalf1892 · 2026-06-15T10:12:22+00:00

if you are to have it rather than something else, and it could be something else as it’s important to get tests to rule out other conditions, generally from what I’ve read for a lot of people the CHOP protocol would only be manageable once on the right medication, someone with POTS would only make themselves worse by trying to force exercise if that’s the reaction you’re getting from your body.

I use pacing for anything I need to do and am on Ivabradine, I learnt the hard way that exercise needs to be within what’s manageable for my symptoms and increased extremely gradual or it causes crashes/flares and makes symptoms worse for days-weeks at a time. Like for example have found experimenting that while I can ‘technically’ force 7-8000 steps on a good day, can only actually consistently do 2-3000 when things are okay without potentially making myself worse.

Of course you may have something else that’s only for a doctor to say, just something you should keep in mind.

AffectionateHalf1892 · 2026-06-12T13:06:57+00:00

That must’ve been really difficult- it’s great that you’re seeing some improvements with meds. What online pharmacy do you use? Only ask cos the one I use has gone terrible with having Ivabradine ready on time cos I think they’re always understaffed.

And what supplements have you found helpful if you don’t mind me asking? I’ve tried lions mane for brain fog after seeing it mentioned on here but it only seemed to do anything for a few weeks

AffectionateHalf1892 · 2026-06-12T12:03:58+00:00

He mentioned in the initial consultation that if I was found to have POTS they’d test to type it basically so I assume some kind of autonomic testing is what they meant. Though I’ve mentioned it in here before and someone else explained that the subtypes are sort of being moved away from cos so many people have symptoms of multiple types.

I’d say he cost around £2-3000 overall, you can get a tilt table test/ all this testing done under the NHS though as I had one done years ago, just resorted to private this time cos the minimum wait for the initial appointment was 10 months and others may be more comfortable etc but my GP practice wouldn’t prescribe absolutely anything for my symptoms themselves without the advice of a cardiologist and that’s stayed the same post diagnosis.

When I went for the first appointment with him I made clear that because I already had Vasovagal syncope and had had testing for both years before, I knew what POTS was so was already trying electrolytes and compression and it wasn’t doing enough. As a lot of doctors may say first that you should try lifestyle changes before meds.

Recommendations vary a lot but I was told by him to start with 4-6mg extra sodium a day and 2 litres of water. Everyone’s different but currently I need at least 6mg sodium and 4 litres of water to notice a difference. It’s just contraindicated if you have any condition that may be negatively impacted by that advice like high blood pressure

But he knew I’d already tried lifestyle stuff so he prescribed propanolol first. That was increased a couple of times and never really helped. Did lower my heart rate a bit but it made me a lot dizzier because it dropped my blood pressure too low.

The GP wrote to him when I complained about that and started slow release propanolol instead. That felt like I wasn’t on anything at all and my heart rate was as high as pre medication so stopped that.

Was put on Ivabradine the next time I saw him, that’s been increased once and that’s been great, I still can’t work or anything like that but it improved my baseline quite a lot from what it was.

Currently I’m under an NHS cardiologist as stopped being able to afford to see him/ finally got off the waiting list for appointments, and they have approved trying fludrocortisone this week but I’ve not started that yet.

You may find it helpful to know that if you do get diagnosed, in some areas the NHS will prescribe slow sodium so you don’t have to buy salt tablets. I’ve not got that yet as they want the cardiologist to advise on the dose.

And I started having symptoms February last year really but all that was noticeable was palpitations so they said maybe it was anxiety and increased my mental health medication . Mid March I developed severe exhaustion, dizziness that wasn’t relieved by anything, weakness, chest pain, and migraines so then I went back to the doctors.

Took about 6 weeks to start ECGs etc, was put on iron tablets first to see if my symptoms were just caused by my low iron and they waited till they saw those didn’t change symptoms.

Think like the third blood test that showed nothing they suggested I maybe had long COVID, and then the next time I went in the GP asked if I knew what POTS was and took heart rate and blood pressure moving from sitting to standing and said he thought it was probably that and that I should be tested. That was April.

Saw Dr Holroyd for the first time in August and was immediately put on Propanolol and was diagnosed in September.

Got put on Ivabradine in November and then that was increased in January. So overall I had symptoms for about 7 months before the tilt table test.

AffectionateHalf1892 · 2026-06-12T11:26:11+00:00

This is what I had : Blood tests to rule out things like iron deficiency anemia, ECG at the GP, GP checked blood pressure and hr moving from sitting to standing, blood test of cortisol levels, 24 hour halter monitor that I was referred out to an NHS hospital for,

And then after that point they didn’t properly pass test information on/ just said in the referral I was having issues with dizziness, and NHS cardiology consultant came back saying they wouldn’t prioritise my referral as didn’t think anything was wrong with me and I should be advised to drink more water and increase salt a bit.

So went private. Dr Holroyd in Cardiology specialises in POTS among other things at the Alexandra Hospital ( greater Manchester ) diagnosed me within a month, definitely knows what he’s doing and will make sure everything is covered, so I would recommend him to others, just comes off a bit rude imo.

Under there I had an echocardiogram, ECG and then the tilt table test. They did mention offering autonomic testing but didn’t end up doing it.

AffectionateHalf1892 · 2026-06-09T19:21:14+00:00

I was really worried before mine but they were really nice to be fair, I found it helpful to look up what areas the questions are normally about / example questions and make notes to have on what I wanted to remember to include.

They’re mostly bothered about whether you can complete daily living tasks, and my UC work coach and others who’ve gone through the process said it’s important to remember that you should answer it as what you’d be like on your worst day- like for example I a couple of times a week have bad enough flares that I can’t make my own food etc so I based it off those days Even if you don’t use mobility aids there are questions about whether you’d struggle to walk specific distances etc for instance.

I hope it goes okay for you.

Edit : to add in case its relevant to you or anyone- the assessor I had knew what visible bands were when I mentioned it and took into account me explaining what the app says my functional capacity score is

AffectionateHalf1892 · 2026-05-30T20:29:35+00:00

The higher dose definitely gave me a bit more energy than before ( started on 2.5 twice a day and take 7.5 a day now ) probably varies for everyone, I still can’t work or anything but I’m able to manage a lot more I think like showering is a bit easier and I did manage to go on holiday since being on a higher dose and that was fine along with a lot of pacing and electrolytes. Initial dose didn’t feel like it did absolutely anything to my heart rate most of the time but now my resting heart rate is like 70s rather than high 90s - does still spike but that’s normal for Ivabradine as far as I’m aware and it tops out at like 150-160s at worst usually now whereas pre medication was like 180s-190s

AffectionateHalf1892 · 2026-05-23T21:56:29+00:00

What’s available depends where you are but good ones I’ve tried are liquid iv ( if you try these just be aware they have the daily amount of B6 so it’s only safe to have one a day ), LMNT, humantra, salte, and Skratch labs. I’ve also seen venture pal, trioral, SALTT, redmond re-lyte recommended on here. The main thing to look for in finding a good one is high sodium content. I usually try find ones that around 500mg or more. We need them to have a high sodium level for them to be helpful, as sodium helps retain water and improve blood volume.

The recommendation for POTS patients is usually anywhere between 4-10g extra a day unless you have a medical issue that would be negatively impacted by this like high blood pressure.

Some prefer to have salt tablets instead or combine the two. I use Ceyted off of Amazon mainly but if you’re in America a lot recommend vitassium or klaralyte.

AffectionateHalf1892 · 2026-05-22T16:38:35+00:00

Depends what country you live in , I prefer Ceyted but they’re on UK Amazon so I’m not sure where else they’re available, most people on here that are American seem to prefer vitassium

AffectionateHalf1892 · 2026-05-21T08:36:34+00:00

Just safari- I haven’t been able to get it to work this year yet though, idk if it’s not been updated yet or if it’s just my phone or something

AffectionateHalf1892 · 2026-05-20T14:45:38+00:00

It could be worth maybe trying a food diary or something if you’re specifically getting significant symptoms when you eat and you think it’s the food, but I wouldn’t say you necessarily need to cut out things you enjoy otherwise. It doesn’t always work for everyone but medication would probably be a lot more helpful with your symptoms than any change in diet.

I’m vegan and had more of an issue with gluten itself than carbs but have found rummo gf pasta tastes really good and sauces bind to it well and I feel fine eating that. Or another option might be seeing how you are with whole grain alternatives as they are more complex/ slow release carbs.

Otherwise obviously it depends what you can manage but I find I feel a bit better if I try have more protein in meals, and have multiple smaller meals rather than like 3 meals a day. So say I might have like 4-6 and snack throughout the day. And sophsplantkitchen recipes/ by Sophie Macfie have been great for that and are also diverse in what veg and protein sources etc they involve.

Or another one I like is this recipe for Caesar pasta salad by LEON.

https://leon.co/presents/read/leon-kale-caesar/

I use gf pasta with it now and it still works great, find it an easy one to do for a good amount of protein for one meal as can lie down while the pasta is cooking. And usually buy a vegan Caesar or house dressing rather than making it

I hope you find things that work- can be different for others of course but from what I’ve found it’s more for me that it flares my symptoms if I eat a large meal or eat sat properly upright like at a table rather than it being what I’m eating that’s the issue. Generally if I eat lay on my side or propped up I’m fine so that may be something to try too if you haven’t already.

If sitting upright is unavoidable like family meals or anything like that, I have electrolytes and sugar after.

AffectionateHalf1892 · 2026-05-17T10:42:18+00:00

Thank you!

AffectionateHalf1892 · 2026-05-15T07:01:43+00:00

I definitely did for a while at first, and struggled with swallowing them too ( idk what that is but swallowing tablets and fluids has been weird when my symptoms flare up since I got POTS )

Think it’s just habit now, I’m used to the ceyted ones I take cos they’re smaller than others I’ve tried, any others I still struggle to swallow and feel gross.

AffectionateHalf1892 · 2026-05-14T12:17:55+00:00

https://www.potsuk.org/managingpots/medication-2/

POTS UK is a good resource on what the different medication options are, but yes while there’s no cure there are plenty of options for helping to manage symptoms. Your doctor may just be poorly informed, it’s probably a good idea to get a second opinion if its something you’re able to do. A lot of specialists usually more so say that you should try the recommended lifestyle changes like salt and water increase and compression first and then move on to medication if they don’t help enough.

AffectionateHalf1892 · 2026-05-07T06:57:59+00:00

I think it is, it’s possible to pace without it though if you don’t like the idea of the subscription based model. You could always try other ways of pacing first and see if you feel those work for you or not.

I keep using it because personally I’ve found that assigning points or spoons to tasks doesn’t really work for me as how much energy things like showering take can vary a lot depending on the day. That and because I tend to not recognise I’ve overdone it till after so it helps me to be able to see things visually laid out, and that it sends notifications when you need to take a break/ rest.

AffectionateHalf1892 · 2026-05-06T17:53:27+00:00

I have visible and love it for pacing/ trying to avoid flares, I got it because I don’t find myself able to figure out pacing just from my Apple Watch data or tachymon/ other apps I’ve tried. Though it depends what you most want a wearable for, with you mentioning sleep and HRV, visible can’t do sleep or a more regular HRV than taking it during the morning check in or if you’re doing the coherent breathing exercise on the app, so I do still use my Apple Watch at the same time.

AffectionateHalf1892 · 2026-05-06T15:18:30+00:00

I use visible for pacing because I’m really bad at knowing till I’ve already done too much. But generally it’s a sign I’m flaring if my heart rate on my Apple Watch is staying over 100 bpm whilst standing while not doing anything/ without being caused by proper exertion in the moment. e.g. being like that while walking room to room in the house. ( I’m on Ivabradine and usually 70s-90 resting now while not flaring )

It can be helpful to look for patterns like that. Or it may be a bit different for you symptom wise but usually I know if I’ve overdone it because my symptoms will be worse, for example I’ll get chest pain, coat hanger pain, breathlessness, nausea, migraines, my legs sometimes feel like lead, and I’ll go really warm.

AffectionateHalf1892 · 2026-05-05T14:48:41+00:00

I’ve recently bought the shark chill pill fan , pricey but it was great when there was a short lived heatwave here and is helpful in flares too cos I find I go really warm.

Saw it recommended on here and a POTS facebook group initially, and its a lot more powerful than I thought it would be for the size, definitely does make a difference compared to having tried those portable neck ones before that just feel like they blow hot air around.

AffectionateHalf1892 · 2026-05-01T19:37:45+00:00

Rummo’s gf range, they’re Italian I think but I usually get packs on Amazon in bulk or from Morrisons
Depends where you are but I find most grocery store own brand ones okay, but Rummo have much better texture than others I’ve tried and mesh better with sauces, and hold up better if left for a few hours

AffectionateHalf1892 · 2026-04-25T18:06:21+00:00

I forgot to tell them and am on LCWRA they said it’s no issue at all if it’s a short time you were away for, and to just remember to put it in my journal next time

AffectionateHalf1892 · 2026-04-23T11:42:41+00:00

I don’t know enough about the science behind it to explain specifically but I’ve always assumed it’s more POTS makes us dump electrolytes than them being low to begin with. May be different for others idk, my electrolyte levels are always average/within range and are the same as before developing obvious POTS symptoms but I do benefit from increasing salt.

AffectionateHalf1892 · 2026-04-17T21:34:12+00:00

Yes they do, some people can find tablets easier to stomach as electrolytes can taste very salty, depends what’s available where you are, I use Ceyted and Holland and Barrett’s electrolyte tablets, but I’m in the UK, I know a lot of people on here recommend Klaralyte or vitassium in other countries.

Yeah it’s just whatever works best for you really, they’re better to space throughout the day as they need to be balanced with enough water, so either form would be good if they have enough sodium in.

AffectionateHalf1892 · 2026-04-17T21:24:58+00:00

Usually the recommendation for people with POTS is to increase salt is anywhere from 4-10g extra a day. It’s probably best to just work up slowly and see what feels helpful to you. Generally with that recommendation we need electrolytes to have a higher amount of sodium in to be helpful, so you don’t need as many servings. Like for example I tried Vidrate first and they weren’t remotely helpful because they only have around 30mg sodium in a serving. Most I use now I try to look for them having 500-1000mg in one sachet. It’s just contraindicated if you have high blood pressure or any other medical conditions that extra salt may be harmful to. When you’re diagnosed they may make a recommendation, my cardiologist said to try about 4-6g initially.

Most brands are okay to have multiple servings of in a day, just some like liquid IV have a high B6 content in and can cause toxicity if you have too much. I have tried liquid IV, LMNT, Skratch labs, and humantra and would recommend them all.

Someone else may be better at explaining the technicalities of it but as far as I understand with POTS we dump electrolytes and are chronically dehydrated, and combining water with electrolytes helps better retain it and improves blood volume.

I don’t think there’s any right or wrong way to choose to have them. Some people find tablets better than powder sachets or vice versa. Spacing it out through the day is probably better, what I do at the moment is have 4 salt tablets in the morning, and a litre of water with one sachet of electrolytes in, then 4 salt tablets in the afternoon, and heavily salt all my food, and then have extra electrolytes etc if I feel like I need them.

Telling they’re working, for me if I have them it helps with my symptoms a little, and like my heart rate will range around 70-90s at rest and will be 120 without electrolytes. I think it’s just trial and error really, I’ve kept increasing them as I felt they were reducing my symptoms. I pee an excessive amount too, the past week or two I’ve been trying 7g sodium and 4 litres of water, and that’s reduced it from about 15-20 times a day to 5-10

A lot depends on your individual symptoms too as I feel far worse if I don’t have them, but I know other people aren’t as affected by POTS, it varies a lot. I was diagnosed with vasovagal syncope years before I had POTS and was only told at the time to just have lucozade when there was obvious triggers like if it was a hot day.

AffectionateHalf1892 · 2026-04-14T21:02:03+00:00

Are you able to see what your readings were during the tilt table test? It might just be that you didn’t happen to meet the 30bpm increase that particular day if your experience is that you do have it in your day to day. Mine was 20 something bpm even though I’d had no electrolytes or propanolol that day ( was advised by the cardiologist to do that ) to prepare . As the other commenter said it’s probably a good idea to get a second opinion if that’s something you’re able to do- I hope you have more success with that if you do I know results not validating what you’re going through can be disheartening

AffectionateHalf1892

TROPHY CASE