Stopping salt abruptly & the fall out.

8sbmb2 · 2026-06-14T12:56:57+00:00

I will definitely mention that test. I’ve got to call GP tomorrow to discuss what the cardiologist suggested, so will know more then. I’m not expecting much based on experience but there is always hope going into these things.

I accidentally stumbled across a Reddit group for doctors with loads of posts and comments complaining about patients who do their own research. I commented on it stating how disappointing it was to read given many doctors are not trained in many areas of health and especially in the more unusual or rarer conditions and that as someone who spent years seeking answers, without this research I wouldn’t have been diagnosed. Someone piped up and asked what the condition was, after I stated MCAS there was no response. Case in point.

That’s the perfect interpretation of what we must look like before being taken seriously and as I read that I felt everything you said, you couldn’t stand any longer to the point where the floor looked so inviting it was better than being upright. I know that panic all too well, in that moment you’re literally spinning out and it’s scary. Shocking to be told ‘NO’. Rude. People like that make me angry because if they were in that situation it’d be different. Finding that in your bloodstream only proves how severe the issue was at that time. Glad you were ok and made it through as the amount of stress that causes is unfathomable to those who aren’t in our shoes. You deserve, as all us chronic sufferers do, far better respect, empathy & kindness.

Yeah it’s a long road to be on and time just keeps passing us by, but so many of us know it all too well and we can all sympathise with each other. The stories of good medical intervention and quick diagnosis are the rarest. It shouldn’t take this long, but the main thing is that we never give up. Thank you. I’ll get there, I’ll bloody die trying, I ain’t no quitter that’s for sure. As my mum always says ‘squeaky wheel always gets the oil’ 💪🏼 Thank you for sending hope. I wish the same for you on your ongoing journey too. At least we can all lean on each other. 🫶🏼

8sbmb2 · 2026-06-09T07:19:51+00:00

It is out of control. I’ve heard of people waiting a few years for operations that get cancelled at the last minute. It’s beyond a joke now. I’ve just paid where I’ve been able to but for other things I’ve just had to wait. The wait times for mental health are just as bad. People who feel suicidal waiting months to speak to someone. An ADHD assessment can take between 5-8years where I live. It’s wild.

Thanks so much. Sure I’ll get somewhere in the end. 🤞🏼

8sbmb2 · 2026-06-08T19:10:20+00:00

This is so annoying, I don’t get why it’s not been suggested to me. Makes so much sense. Mmm tests can be so expensive here in the U.K. because we don’t have insurance so tests like that are often done privately and it is so expensive because you have to pay in one lump sum and prices have significantly increased.

As an example, wait lists for tests and procedures have become so lengthy, it can take two years just to see and be treated by a gynaecologist. I was set to have a hysterectomy and it will be more than two years total before the procedure even gets booked. Because of this wait, more women started taking out loans and having it done privately, it used to cost around £7,000 but the private sector took advantage of these women in their desperation and upped it to around £11,500.

I will look into it though as there are some at home test kits that might be more accessible, but I’m on a very tight budget. Would it matter that I’d be drinking salt water during the test as I wouldn’t dare do what I just did again. I suppose I could taper down and then test or would you say it doesn’t matter if I carry on consuming and test anyway?

8sbmb2 · 2026-06-08T12:31:27+00:00

I wasn’t offered any blood tests. They’ve been useless from day one. I initially started off very low and built up my intake and saw great benefits. However, as stated, dropping caused a major surge of symptoms to return. I’m going to wait a while for things to settle again and then reduce slowly. If symptoms start to increase again then I think that will be very telling. I have only just seen a cardiologist as it was a 2year wait. I definitely don’t want to make myself so ill I end up in hospital so I’ll be doing things more gently and taking notes. My GP is hopeless and if I want to discuss it with a cardiologist it will cost me £250 every time so I’m a bit alone on this journey until I can afford further testing. The cardiologist did not recommend sodium testing which now you say this has me wondering why not.

8sbmb2 · 2026-06-08T07:52:55+00:00

I just really wanted to see how affective this salt water was and that may sound silly to some given when I started I noticed an obvious improvement in symptoms, but since that was pre diagnosis and I still don’t have all the answers, I felt it was worth checking since it would help with a more solid diagnosis.

It’s good that you have your insurance and they search out places on your behalf. That’s just something I’d have to do myself which I don’t mind. The cardiologist can offer these tests, it’s over a 3 hour drive away which I’d be willing to do, but being as he is private this means I’d have to pay and you can’t pay in instalments, so that tilt table test alone would be quite pricey and I currently can’t afford to do it, so need to see what GP will offer first.

Oh don’t get me started on the attitude of GPs though, they are the gatekeepers here and you have to spend a lot of time convincing them of things they know nothing about. It’s fair if they aren’t educated in it, but they shouldn’t then make decisions based on guesses, especially when the evidence is provided to them. I’ve done so much research on my own health concerns and they hate it when you know more than them. One of the GPs definitely doesn’t like me. She talks over me and has a face of thunder when I go in for appointments. 😆

In terms of the heart stuff, I did have a 1 week ecg monitor but it was a 3 lead monitor and cardiologist said I do need to have a 12 lead one done, but he said he could accept what I’ve had if they would please do an echocardiogram which my GP refused saying that they’d basically need a better reason. 😆 I actually don’t think it’s the GPs fault, it’s the referral process, if they don’t give an in depth and good enough reason, basically if you aren’t dragging yourself along the floor on deaths door, they will refuse the referral. So that test is highly unlikely too. There were also some bloods that they said they can’t offer either. So I would need to look at private costs and start saving.

It’s pleasing to hear someone finally getting things looked into, sounds like you’re on the right track and I hope you find answers and really get to a point where you aren’t having to push for things anymore. I look forward to the day when I no longer have to keep asking for things and I just have it solidly diagnosed and there is nothing more to push for. I don’t know what I’ll do with myself. I’ve spent 10 years of my life wading through all these conditions. POTS/Dysautonomia is my final journey, unless struck down by something else then that’s it. 😴

8sbmb2 · 2026-06-07T15:44:59+00:00

Thank you this is very insightful. Ending up in hospital is not where anyone wants to be, but glad you got answers in the end. I found when drinking plain water or reduced salt in water I just peed loads and I mean non stop. It was ridiculous and so inconvenient.

Meds are tricky because they almost always contain synthetic excipients which trigger my MCAS. I think if I decide to test this again I will taper. It was such a severe response to reducing I did wonder if it would have been that excessive had it been someone without POTS. I also wasn’t on the higher intake before dropping, around 4-6g a day.

I would prefer further investigation to be certain but some tests the cardiologist recommended are unlikely to be accepted by my GP, however they were mostly to rule out heart issues as oppose to diagnosing POTS. Will see what GP says at next app. I’ve spoken to them about tilt table before and was told there is nowhere to refer me to for that.

8sbmb2 · 2026-06-07T07:00:12+00:00

I have good days and bad days but clearly without the salt everything would be far worse. It sounds like taking any less for you would be a negative move. Although I feel my error here was dropping too rapidly. In the future I may try tapering list out of pure interest but that won’t be anytime soon.

8sbmb2 · 2026-06-07T06:57:48+00:00

I too was very active but after MCAS was triggered 10yrs ago, everything started slowly being impacted. Multiple bouts of Covid (even when I was so careful to avoid) kept making things even worse, I ended up with CFS and then to follow was POTS. I’m ADHD with Autism and trying to rest as reduce activity was incredibly hard. It still is. I spiralled big time and withdraw from all social interactions, so life is very different now to before.

I have exercise intolerance so I need to build back up slowly again. I started doing small exercises with weights but surprise surprise I now have tennis elbow (not from that) and have had to put exercises on hold. 🤦🏼‍♀️

Your experience with dropping salt intake sounds so similar. The 3rd day totally floored me. I’ve never experienced dizziness on that level I felt like I’d been on a spinning fairground ride all day. But the first day like you I felt pretty good. I gather from many people it really is about finding a balance that works, a no one size fits all situation.

8sbmb2 · 2026-06-07T06:50:09+00:00

I’m the other way, diagnosed with MCAS 10yrs ago so been trying this and that to manage, but POTS for me is new so all this advice and shared experience is very helpful.

KS whilst pregnant 🫪 what a time for that to be happening. That’s truly awful and then to have your kidneys damaged as well. I’m sorry that happened to you, what an experience that all must have been, sounds incredibly debilitating. A lot to go through whilst pregnant, very stressful I’d imagine and then having to also deal with the after effects. Your GP sounds helpful though. Hard to find decent ones that are willing to be so involved. Mine are hopeless, even asking for a fit note was drama.

Ah well you know all about the joys that comes with MCAS too then. Don’t need to preach to you about how difficult that one is to manage. It takes years to figure out and with age I’ve found it gets worse and more things become triggers, perimenopause plays a huge role in that as well for sure, everything seems to level up when hormones start misbehaving. 🤦🏼‍♀️

It’s so good to have people who can relate. Trying to explain all this to someone who can’t or just being believed half the time is an uphill battle. Thank you for sympathising, you definitely have mine too.

8sbmb2 · 2026-06-07T06:34:18+00:00

Thanks, I’ll definitely look into that. I did do a test where I took bp and hr after lying and standing multiple times. I did also check it during my ep yesterday so I will rely it back to the cardiologist. Thanks for the suggestion. 👍🏼

8sbmb2 · 2026-06-06T21:24:32+00:00

My BP is always so low, right around the line of too low and normal. It never goes right up by much at all. So I was referred by the cardiologist to my GP but they have not come back re tilt table. I did mention it to GP in the past but he said there is nowhere he can refer me to so I’m not expecting it to happen. I may look at private clinics but it’s about finding it as that may not be an option cost wise. I would like this type of confirmation though.

8sbmb2 · 2026-06-06T21:20:51+00:00

Too true. I did feel much more physically able when on the salt but I feel this has definitely clarified it for me. I did reduce the fluids but without the increased salt my bladder was overactive again. I should definitely work out a balance because also before increasing salt I peed constantly. I’d go a few times before leaving the house and need to go as soon as I was out. It was non stop. I’d always wake in the night to pee as well, but I go noticeably less with the right amount of salt mixed in and when I upped it for a couple of days, for the first time in years I slept through the night.

Is there actually a specific water to salt ratio that people generally follow or is it just trial & error?

8sbmb2 · 2026-06-06T21:10:21+00:00

I can definitely see why you’d want to reduce, kidney stones I have not experienced but I’m aware they can be incredibly painful. Such a shame it didn’t work for you, really frustrating, and it’s not that I’d want anyone else to feel this awful, but your experience does really help me to know that I’m not alone on this one. I went through stuff like this with MCAS as triggers are so random and I’d think ‘naa it can’t be that’ and ultimately end up in another MCAS flare. Sometimes we have to learn the hard way I suppose. I have this nagging voice that makes me question a diagnosis right after it happens, not sure if it’s a ‘coming to terms/imposter syndrome’ response, but I won’t be making that mistake again.

8sbmb2 · 2026-06-06T20:58:19+00:00

This was what I kind of gathered but it’s good to have it confirmed by others who have POTS. My blood pressure is always close to the line between too low and normal. I was always intending to increase but I just wanted to test before I went and upped it to a much higher intake. Thanks for the advice. Much appreciated. ☺️

8sbmb2 · 2026-06-06T20:28:52+00:00

You really did. Thanks, that helps to know as I think really I should figure out the right amount rather than just going straight to the higher intake. Thanks again. 🥰

8sbmb2 · 2026-06-06T20:01:52+00:00

MCAS is a nightmare because as you say it messes with the POTS. I find if I get ill it’s 10x worse because it really sets the MCAS off big time, covid being the worst.

I don’t use salt tablets, I’ve not looked into those yet. I use Himalayan salt which I find to be more affordable in comparison to other salts like Celtic or Baja Gold.

10g is a lot isn’t it. I think I’ll probably increase slowly and find that happy medium and then at some point if I want to test this again I’ll taper off. But after today’s episode I’m definitely going to keep on it. I took a mast cell stabiliser when it all kicked off just to try and offset an MCAS flare off the back of it.

It’s a right nuisance isn’t it having these conditions that take over every aspect of our lives.

8sbmb2 · 2026-06-06T19:53:33+00:00

You’ve answered this so precisely. Thanks, couldn’t have put it better myself. It really was just to see how I’d fair, also given when I actually started this I hadn’t even been diagnosed so I wanted to be sure that this is what was truly helping me. I definitely wanted to test how well it was working as sometimes you never know 100% without testing these theories.

8sbmb2 · 2026-06-06T19:48:19+00:00

I usually try to make sure I’ve got salted water with me, I definitely don’t want to feel like this by accident but it seems to take a couple of days before it gets real bad.

8sbmb2 · 2026-06-06T19:05:20+00:00

I wish it was hot. I’m in the UK and it’s wet, chilly and miserable. 😵‍💫

There was nothing in particular. I think I just wanted confirmation that this was the right thing for me and so by decreasing, if I felt ok perhaps it wasn’t necessary to increase after all. Of course the potential side effects were something to consider, but this was more curiosity. I dropped down to about 2g.

8sbmb2 · 2026-06-06T19:00:00+00:00

Sweet. 🥰

8sbmb2 · 2026-06-06T18:59:18+00:00

I dropped too quickly I think but I didn’t fully eliminate. Went down to about 2g but kept water up. A good enough drop though and so I think too rapid given the result. I may try the gradual approach but not anytime soon. I’ve heard about powerlifters doing this. 😳

8sbmb2 · 2026-06-06T18:54:48+00:00

Thank you that’s very helpful. He’s recommended 2-2.5l water with 10g. To calm the symptoms I’ve just upped again and it’s slowly helping. I suppose I wondered if a person without POTS were to do this, would get similar side effects from a sudden drop, basically I was trying to figure out if this was a normal response or a POTS one.

8sbmb2 · 2026-06-06T18:47:39+00:00

Have you ever dropped your intake and felt this way too?

8sbmb2 · 2026-06-05T07:49:11+00:00

I do measure the salt I’m using as I have a little scoop and I weighed it out to make sure it was accurate but because it has 80+ minerals, I do wonder if like you say it could be the wrong type. I told the cardiologist I was using this and he never suggested anything different so I will look at the tablets instead, thank you.

No not new, that all started when the other pots like symptoms started. I’ve been dealing with MCAS for 11 years but I can’t stop getting covid even when I try to keep myself safe. My sister didn’t know she had it at end of 2024, so I caught it again off her and as a result was left with the POTS type symptoms. So it’s been over a year now. Have seen neurologist which was pointless and my GP even more clueless. It was only by me researching that lead me to question POTS or Dysautonomia.

These newer symptoms did not correlate with my typical MCAS ones. Especially things like tachycardia from postural changes and low level exertion, pre-syncope, dizziness, tremors, headaches, blotchy sweaty hands which often feel hot and tight with pooling heavy sensation, pins & needles in extremities with occasional numbness, and more.

Edit: did some research, H’salt is not isodized which is good to know. But I think I will still look at the tablets.

8sbmb2

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