Batik

I was reading something else about electrolyte drinks for rehydration earlier, and noticed that the article in question was actually about how to rehydrate someone who is having constant heavy diarrhoea. Since we're suffering from POTS, not constant heavy diarrhoea, surely we have different needs? We're able to eat, after all, so our diet is providing carbs. If you're having diarrhoea at that level, you're usually not eating either. Meanwhile, I'm sticking with the following mix, and doing quite well on it. By now I've made up the salt mixture and am keeping it in a tub with a little 1/2 tsp scoop. * 1/4 tsp sea salt * 1/4 tsp low-sodium salt (half sodium chloride, half potassium chloride) * pinch of bicarbonate of soda * 800ml/27oz bottle of water It's hard to tell yet whether it's actually benefiting me, but I'm finding it easy to keep drinking, which is more than I can say for any previous electrolyte drinks I've used. I think I do feel a bit better on it.

The finger swelling didn't last, I was back to a size 16 thimble the next day. So I still have no idea whether I'm actually retaining any of this salt water, but considering how much I'm drinking, and I have a nifty app I'm using to keep an eye on that, I'm surprised that I'm not running to the loo more often.

I'm trying to think whether these episodes coincide with the ones where I need a nap and happen to be really cold. So I pile on the cardigans and blankets, curl up, fall asleep quickly, and then wake an hour or two later feeling breathless and horribly overheated.

On the subject of sleep, it sounds like you have Delayed Sleep Phase Syndrome. Look up darkness therapy, I've found that to be an excellent treatment for it.

What meds are/were you on? Cimetidine can cause those breast problems.

In my case it's probably costochondritis (inflammation of the cartilage between the ribs), which is usual in fibro, which many of us have. One clue is that it's tender to the touch on the surface, which wouldn't happen with cardiac pain, so I'm told. Gentle stretches to open up the chest help.

A friend of a friend with severe ME, and almost certainly undiagnosed POTS, died from water poisoning a month ago. He hadn't eaten much the day before and was trying to get his fluids up, and no one had ever told him he should be getting more salt. I don't think he even drank all that much. Please be careful.

You mean this is something I was meant to fuss about? I've been getting it for years. I'm almost entirely housebound and have to spend a large part of each day in bed, so it's not as big a deal for me. Though it's inconvenient if it happens when a support worker is here, as it means the support session is pretty much going to be a loss.

The COB Foundation is a really good resource on bladder-related stuff.

Can anyone recommend an Android app for BP/HR? I need one where I can input home TTTs and have them show up as a nice graph, and that will also flag up hypotension, not just hypertension. I must have tried about six already! I've got a 7" tablet, the Google Nexus 7. This is just for showing to drs etc, I've already got good software on the laptop.

I'm finding it hard to tell whether it helps yet, but I can report that after a day or so of drinking salty water, I've gone up a thimble size. Normally I never retain water, and I wasn'ta larger thimble size even when I was overweight. Incidentally, something odd happened when I was losing weight. Everyone else on the weight loss forum said that they retained water if they ate salty food, or were premenstrual. That never happened to me.

Normally everyone's telling us to stick to complex carbs! I certainly won't be putting sugar into my water bottle, partly because I don't want mould again, partly because I don't do too well on sugar. I'll see how I get on. A huge number of those electrolyte drinks don't have any sugar in, which does make me wonder.

Well, the sugars in raisins are about half fructose and half glucose, for instance. The amount of raisins I snack on seems to be about 4g glucose, and about 8g sugar in total. One medium apple is about the same or slightly more, though its total sugars are 19g, made up of fructose, glucose and sucrose. I don't know if that's enough. I've just had a look through the various electrolyte drinks on a website, and they vary from 28g sugar (not all glucose) per serving to no sugar per serving, with some in the middle at about 6g. If it's not a daft question, is rehydrating tissues what we're actually trying to do here? After reading that article, it looks like I should be using equal parts sea salt to low-sodium salt in my drinks, in order to get the right balance of sodium to potassium.

Presumably you're covered if you already get some sugar in your diet, though? I eat fruit daily. Bear in mind that electrolyte drinks are often aimed at people who are having bad diarrhoea and not getting any food.

I need to get back into doing electrolyte drinks. (For the record, I still don't have a diagnosis, I'm being passed about between doctors at the moment, but we're pretty sure that I have some sort of dysautonomia, either POTS or NMH or something.) I used to make them up in water, starting with low-sodium salt to give me both sodium and potassium, but I got fancy and mixed in d-ribose (a sugar that's meant to be a good supplement for ME) and magnesium citrate, and I did this in the Klean Kanteen metal water bottle I keep by the bed, which has a plastic bit at the drinking end. Then one day I discovered revolting quantities of black mould in there, which we reckon was due to the sugar. At this point I switched to making up the drinks in herbal tea. I found that a liquorice base worked with the salty flavour, and hey, liquorice is meant to be good for POTS anyway. But it was a lot of faff, and eventually it fell by the wayside. Yesterday I tried 1/8 tsp low-sodium salt and 1/16 tsp sodium bicarbonate (stomach and bladder are playing up at the moment) in a glass of water, and discovered that it was palatable, easy to stir in, and strangely moreish. And I seem to be feeling better on it. The sodium bicarbonate may well be a temporary thing, but either way, would I be safe mixing this up in the water bottle, or am I likely to get mould again? I now have two water bottles, so they get put in the dishwasher more often than they used to. Keeping a glass by the bed is likely to lead to a breakage sooner or later, and it's the last place I want broken glass.

Could you edit this poll to add an "I've never been bedridden option to the second and third questions, please? It won't let me answer unless I answer all three questions.

Could you add an option for "I have no family/I am not in touch with my family" to the second question? If this is an anonymous poll, I would also add something to cover partners/families who are downright abusive on the subject. It's sadly common. I don't mean being a bit nasty, though you could add that as a separate comment. I mean actual abuse. I could tell you a number of stories from people I've talked to, but it would get seriously depressing. Let's just say that a number of them would have warranted police involvement.

I tried it earlier, and I can definitely confirm that if I don't sway and clench my muscles, I will fall over! I caught myself just in time about once a minute. And that was with one hand resting gently on the laptop, since I was entering the readings straight onto the computer. Anyway, the readings came out about the same as the other home TTTs I've tried recently, but I'll do a few more and see if there's a pattern.

Very interesting! I'll try it standing unsupported, then, and see if I get different results. Does it not matter if you sway etc.?

If I don't use a wall to support myself, I won't be able to stand still. I'll sway, tense muscles, fidget, and generally not last very long. You're supported during a professional TTT, so I'm curious as to why you reckon it's a bad idea for a home version?

I don't tend to have hypersomnia apart from occasionally, but I do have various things going on with my sleep. I particularly hate it when it takes me hours to wake up properly, and it can be ludicrous if I nap for an hour and then spend another two trying to wake up properly. Coming out of anaesthesia sounds about right. I also ended up with a thoroughly wonky circadian rhythm. First I developed DSPS (Delayed Sleep Phase Disorder), which meant that I tended to fall asleep at 4 am or worse, and then that turned into Non-24 Sleep Wake Disorder, which meant that I was running on a 25 hour clock and falling asleep an hour later every day. I eventually worked out that I could keep them under control using light therapy and darkness therapy, and that helps my sleep quite a bit. Dawn simulation can be good for waking you up properly, I think it gets your sleep cycle to synch properly so that you're not waking up during the wrong phase of sleep. I should possibly try using it for a nap some time, since they often hit me harder. I also sometimes get the thing of waking up with my heart racing, overheating and pouring with sweat. Not to be confused with the thing when I wake up in the middle of the night in complete confusion, often with no idea of who or where I am. Although for all I know I get tachycardia then as well, but I'm in no fit state to notice.

Someone here mentioned that problems after eating can be worse if you're eating leftovers. This is looking like it may be the case for me. It's always noticeable when you're absolutely fine eating a dish one day, and then eat exactly the same thing the next day and get a reaction. (I'm careful about putting leftovers into the fridge shortly after cooking, so that's not the issue.) It's probably not the only factor, of course, and histamine etc. is no doubt involved as well. Has anyone else noticed that the worst episodes tend to occur when eating leftovers? This reminds me: I've got a 24 hour ECG (Holter monitor) coming up, and I want my heart to be doing somersaults if at all possible. Any suggestions as to what I should eat that will make things worse? I'm vegan. Should I just look up high-histamine foods?

Maybe I should devote some time to working out what my baseline rate is for when I'm lying flat, or close to flat (e.g. watching TV). I've tried it a few times, but it's really rare for it to be manageable for me to lie down for an hour and then do a home TTT. I did manage it the other day, and my HR/BP didn't do all that much after I stood up. Even if I can't manage a proper home TTT, I can at least get enough of an idea of my numbers that I can deduce some things. If my HR tends to be in the 50s when I've been lying flat for an hour, then that means that the tests where I only get into the 80s after standing still count. They more often get into the 90s, 100s a certain amount (not recently), and once 114 (though I had an infection that day and collapsed a few hours later). Besides, a few months ago I was frequently getting a rise of over 30 going from merely sitting to standing, although it does usually take a while for the rise to get that high. It seems that when I go for the 24 hour ECG (Holter monitor), I should alternate lying down for an hour and standing dead still for 20 min or so. I'll hopefully be going out that evening to a local potluck, and judging by the last time I went out (took my pulse sitting in the taxi with my fingers on my neck and it was about 96), that'll make my heart jump around suitably. There are so many possible factors with POTS, aren't there. For you food is a big thing, and I'm really glad you've discovered it as the gluten ataxia must have been hellish, but it's not the same for everyone. I haven't been able to get a doctor to take an interest in mast cell stuff, but my GP is trying to refer me to a good ME/POTS specialist and I'm hoping that she'll know something about that side of things.

Mammalian dive reflex? Tell us more?

I've got severe ME, why would I feel completely healthy at any point? I generally feel a lot better lying down than I do standing up, but my activities are also different when I'm lying down (e.g. moving about less), so it's not a simple comparison. What I asked originally is whether we can use the HR readings from lying down after the test as well as from before the test, in order to provide a sort of baseline. The POTS (or whatever it is) is still a lot better than it was a few months ago, even though I've now been off the antihistamines for ten days. I'm wondering whether having a good few months of solid combination antihistamines, H2 blockers and quercetin has simply brought me up to a higher level, so that even when I go off the meds, the suspected POTS isn't as bad as it was before. I really wish they'd run proper tests a few months ago, when I kept on collapsing and being taken to hospital.