Batik

I can't find the ingredients for that Propel electrolyte water, but I really doubt that it's just sodium and other electrolytes in water. That means it would just taste like salty water, and practically no one would buy it. The lack of ingredients is a big red flag for me, especially since their Propel Fitness Water claims to be "calorie free" but actually has a lot of sugar, and therefore calories, in each serving. (US legislation has definitions for "low calorie" and "no calorie" but apparently it doesn't cover "calorie free".) If PEG is a standard ingredient in many meds, surely that means it's been rigorously tested for safety? Also it doesn't mean that it's always a laxative no matter what the dose! Sorbitol is a laxative if you eat too much as well, and that's a very common sweetener. Generally if people have problems with sorbitol in sweets, it's because they ate the whole packet. Plenty of foods have laxative properties at a sufficient dose, and I don't see anyone saying you should avoid bread which has a few linseeds on it just because a high dose of linseeds works as a laxative. Similarly, many electrolyte drinks use forms of certain minerals which are also laxatives, such as magnesium oxide or sodium bicarbonate. Anyway, I don't know what number of Nuun tablets you have to consume before the sweeteners cause problems. I am presumably quite sensitive to sorbitol, as I could tolerate those NOW capsules, but I'm fine with Nuun, so I don't think it's much. What's the harm in trying half a tablet to begin with, then slowly increasing that if you get on with it? Because to be honest, you sound like you're looking for an electrolyte drink that doesn't exist. Either you drink salty water (have you tried it?) or you have to choose between sugar or sweetener, usually with flavouring and colouring too. As risks go, they're a lot less than the side effects most meds have. Nuun U Natural Hydration may be more acceptable to you, have you looked into it?

Sorry, I meant tablets that you swallow rather make into drinks. After a bit of hunting around, and nothing so far to suggest that Nuun may be harmful, I've found that their U Natural Hydration range has far fewer ingredients, and uses stevia for the sweetener. Half the amount of sodium, so you'd need to use more, but that might be an option for you, if you can buy it in your country. They don't sell it in the UK, so I can't try it. I also found, to my astonishment, that not all Nuun is vegan! Thankfully the ones I use are.

I don't do well with massage over the chest area, and she needs to use light pressure over the lung area when doing my upper back. Also I drink water with electrolyte tablets in before and straight afterwards, and often have a snack if I feel lightheaded afterwards. I like to take Sesame Snaps, they are small but work well in this respect. They're half glucose, which I seem to need in this situation, and half sesame seeds, which provide protein and such.

Also you can buy electrolyte tablets. I tried some and promptly had an ME crash. I'd taken quite a lot, but the dose per tablet was low. What have other people found with them? I might give them another try with more cautious dosage some time.

Could you explain more about Nuun being controversial? Is it likely to case any harm if you try it to see how you get on with it? I don't get on with larger doses of sweeteners, my gut was not at all happy when I took NOW digestive enzymes due to the sorbitol in there for instance, but I've never had any trouble with Nuun. Or are we talking allergic reactions? Most coconut water is sweetened too, by the way, check the label, and I read the other day that the sodium and potassium levels may not be what they're claimed to be, someone tested a few brands. Did you ever try water with a bit of salt in it, by the way? It doesn't need to be fancy salt, the health claims for those are nonsense (the levels of any nutrient except sodium are far too low to have any benefit) and Himalayan pink salt is actually just road salt. Try stirring a pinch of salt into a glass of water as a start. Sodium in addition to electrolytes - I'm wondering if you're having finding this confusing, and if so, can we help? Sodium is an electrolyte! It's the main one we need. After that comes potassium, which I personally get by putting some low-sodium salt in my water bottle. Low-sodium salt is a mix of potassium chloride and sodium chloride, which is very handy for us. The ratio isn't the best for us, though, which is why most of my mix is ordinary salt. Then you get calcium and such, but I'm not bothered about getting those in a drink. The amount you get is negligible, you need an awful lot of calcium, so I prefer to take my other minerals in my diet and in capsule or tablet form. Sodium and potassium are what I really want in an electrolyte drink. Sodium alone is fine for many people. By the way, I forgot to mention that there are some natural electrolyte drinks out there. You'll have to take their calories and sugar into consideration, of course. Tomato juice is one, and some people add more salt to it. I found it too acidic for me to keep drinking, alas. I think milk is another. Broth or bouillon can work, though check for sugar and MSG. I like the Marigold bouillon powders, and have been known to add extra salt to them, though I couldn't drink them all day long. Miso soup is another, I think. That's high in histamine, which may be an issue if you have a mast cell disorder, and usually made from soya, which not everyone likes. I get beautiful fresh miso from my local Chinese supermarket, it should be a paste in the fridge, but again I wouldn't want to be drinking it all day long. But then I have a mast cell disorder and break out in a sweat after drinking miso soup. Mind you, it's not just that. I need to drink a lot, the cardiologist said three litres a day, and I don't want to be constantly drinking hot drinks and waiting for them to be the right temperature.

I just googled Propel and it most certainly has sugar in it. Your choices with electrolyte drinks are, as far as I know: 1. Commercial with sugar. 2. Commercial with sweetener. 3. Home-made with either. Unless you like salty water, you're probably going to be putting either sugar or sweetener in too. My preference is salty water most of the time (I'm lucky, I actually like it) and the odd Nuun for a treat. I am careful with sweeteners too, but Nuun doesn't seem to cause me any problems, and having all that sugar in a drink certainly would.

I think the confusion is because electrolyte drink/tablet manufacturers are not, by and large, targeting the POTS community. They're either going for the medical market, in which case it's about diarrhoea/vomiting and the sugar is needed, or the sports market, which again has different needs to ours. Has anyone managed to make an electrolyte drink with stevia yet?

As far as I know, most of the time you don't need the additional glucose because you're getting that from your diet. Rehydration solutions are designed for people with severe diarrhoea/vomiting who can't keep food down, and that's a different situation. So if you're eating plenty, you may well find that sugar-free formulations do the job nicely and the sugared ones just make you feel ill and/or cause weight gain. But if you are having trouble eating, or it's an emergency when you need to get your blood sugar up, the sugared ones can be a lot more useful.

By the way, I avoid sugar too, but there are times when I need it. When I'm getting close to passing out and my blood sugar needs to go up immediately, for instance. It can be worth carrying electrolytes plus sugar for such emergencies. I think I have the odd Diarolyte sachet somewhere, but mostly I carry Sesame Snaps, which are half glucose (= immediate energy) and half sesame seeds (= prolonged energy, with plenty of protein). I've been trying nut bars too, but Sesame Snaps seem to do better. Oddly, if I eat them when I am not feeling lightheaded and generally wobbly, the sugar makes me feel crap. But in emergencies (which don't have to be dramatic, I often need one after a myofascial release/trigger point treatment) they really help.

Still waiting to hear back from the GP, and she's not in today. Meanwhile, I've just had a night of the worst nightmares of my life. My Fitbit recorded my sleep efficiency as 88%, which is around the worst I've had. I've been breathless and tight-chested and generally feeling crap for hours now. Is there anything I can do to help this? I've got an ice pack I'm holding to my chest, I think that may be taking the edge off, and I've been drinking the caffeinated Nuun as a bit of caffeine is a bronchodilator. Also I had 2mg diazepam when I woke earlier this morning, on the principle that I must have had a lot of adrenaline rushing around last night. I have some licorice capsules I've not tried yet, are they likely to help?

Most of the time I drink salty water, and I have the odd Nuun tablet when I fancy a sweet/flavoured drink. Some people find they like salty water, it's worth a try. I put 1/2 tsp salt into an 800ml/27 oz water bottle. The salt is about two-thirds ordinary salt to one-third low sodium salt, which means that there's some potassium in there as well as the sodium. No, it does not taste like seawater! But I admit that most people don't like it. I have a tube of Nuun tablets in my handbag, and have been known to carry around 200ml cartons of coconut water for emergencies too.

Artluvr09 - It's not my food, I eat a healthy diet and very rarely eat fried food. It's because I've experienced trauma, have PTSD, and had trauma-related dreams several (if not most) nights a week. Interesting to hear you get nightmares from food though, are they bad? The GP is off researching prazosin and beta-blockers, as I didn't know to tell her that beta-blockers clash with the mast cell disorder. I doubt she'll find that out, no one seems to know a thing about mast cell disorders here and I'm not under the care of a specialist. If my BP ends up lower, can I try licorice to bring it back up again? Right now it's at a nice healthy level due to the ivabradine. I've not tried licorice as a supplement yet, but I occasionally have it as a tea. I hear prazosin is good for Raynaud's as well. No idea if that's what causes my icy hands and feet, but I'd love to have that under control.

Talk to me of beta-blockers and alpha-blockers, people. I need something for PTSD, the nightmares and anxiety in particular. I hear that prazosin, an alpha-blocker, is fantastic for PTSD nightmares. I'm currently on ivabradine and my HR and BP have been pretty stable as a result. Recently I started wearing a Fitbit Charge HR, so I am now monitoring my HR more closely. It goes up and down more than I expected, especially after showers, so no wonder those wipe me out. I also have severe ME/CFS, fibro and a mast cell disorder. I'm on four meds for the mast cell disorder, which also help with the POTS. My POTS isn't too bad, I was never getting the really high tachycardia, although it was enough to be pretty disruptive before I started on treatment. ME is far and away the worst thing I have. I don't know if you can combine ivabradine with alpha blockers or beta blockers, does anyone know that? Because adding a med which would be a bit crap for my blood pressure is one thing if it's on top of meds which stabilise my blood pressure, and another thing if it's instead of them.

No chest band, no, and that appears to be rare. Apart from having a faulty one, I really like it. I've discovered that I took more steps today pacing on the phone to a friend than I did the rest of the day, which included going out for a walk, and it's been really revealing to see when my HR changes. I think it's measuring my HR accurately, it's just having problems sending the data, which is why I got a graph which looked one way at one time and completely different half an hour later. I have a mast cell disorder with very sensitive skin, I've been wearing it for about a day now, and I'm fine so far.

One Fitbit Charge HR sitting on my wrist! It's reasonably comfortable, but it does have gaps on each side, and it does look a little bulky. I'm not sure what's going on with the HR tracking. I was checking it repeatedly last night while attending to my pouncing duties with the cat, and my HR went up from mid-60s (my resting HR; I'm on ivabradine so that's very stable these days) to 105. However, once the graph showed up, which shows 5 minute averages, the highest it had apparently got was 85. I'd have thought my HR was staying above 85 for more than 5 min, but perhaps not. Since it doesn't show the spikes so typical of POTS, I'm not quite sure how useful this is going to be. It's nifty otherwise. Also it only shows asleep and awake, unlike the Flex which shows asleep, awake and restless, so there's less going on with the sleep data. I made the mistake of sleeping with the Charge HR on my non-dominant wrist and the Flex on my dominant wrist last night, and apparently I move my right hand around a lot more than I thought, so I will have them both on the same wrist tonight. Edit: aha, if you long-press the button once your HR starts going up, it'll go into Workout Mode, and save an average for every minute, instead of every 5 minutes. I put it on about 5 or so min after I got out of the shower, and my HR was 111. No wonder I feel so bloody exhausted from showering! It's harder to get a decent graph for the HR, though. It's the only one that doesn't show up on your browser dashboard, apart from the "workouts". It does show up in the app, but depending on the size of your phone/tablet, that'll be tiny. I'm getting the hang of it, and it really is big on me, but I think it may be worth keeping. ETA 2: ah, no, it's definitely faulty. I put on the Workout Mode, went for a walk with the cat, checked my HR a few times and saw it up in the 70s through to the 90s, and when I came back, the graph for that particular "workout" (1 min averages) showed that it was going up to 105. This is fine. My general graph had it going up to about 97 (5 min averages), which also makes sense. What went wrong is that the workout graph suddenly changed, showing it all well under 70 and an average of 59, with 0 steps and N/A distance (despite including four flights of stairs). After a ridiculously long time on the phone, mostly on hold, with Fitbit, the guy looking into it is meant to be ringing me back, since it is not exactly free to call from the UK. Hopefully he really will call back. I do like the device. Maybe it's worth waiting until it comes out in colours - er, has the bugs ironed out.

That does look nifty, though again, it may be a bit big on me. Have you tried it? I'll keep an eye on the market, and we'll see what happens when the Microsoft Band reaches our shores. All this is making me even more sure that waiting for half a year or so will result in getting something far better.

Aaaaand I just asked folks on Amazon who've bought it whether it's comfortable if you have 5.5" wrists, and the answer is No, it's way too big and the way it sticks out on either side is really unpleasant. I reckon that in another 6 months or so, there will be a decent selection on the market, and the manufacturers will have ironed out the initial kinks. What is it with tech being released when it's really still in the beta stage? I remember when netbooks came out, the early ones of those were really hit or miss as well.

A lot of the reviews say it's dire. I'm swithering over whether to get it or the Flex. My HR is a lot more stable now I'm on ivabradine and oodles of antihistamines, eerily stable in fact, and the main things I was interested in were keeping my activity levels well-paced for the ME/CFS, plus sleep tracking. But then yesterday I was taken to A&E with an allergic reaction, first collapse of that sort in years, and naturally my HR went shooting up, thus reminding me that hey, it might be useful after all. But then another point is that I'm 4'11 with accordingly small wrists, and the Charge HR sounds a bit on the chunky side. Someone else with my wrist size said the top part actually stuck out on either side.

The trigger point therapy helped, my legs in particular were chock full of trigger points. So there seems to have been some almighty flare-up of muscles and trigger points in that area. Amongst other delights, it caused an anal fissure, which is incredibly painful. And the ointment I'm now on to treat that is giving me a nasty headache, though I am still amused that the NHS prescribes nitroglycerine to put up your backside. Is there a possibility the salt did something along the lines of causing a lot of muscle contraction or spasming?

Yes, maybe. I stopped them, naturally! I'm trying to get hold of my gynaecologist, who specialises in pelvic pain, as the pain is worse, and I doubt a GP would have a clue what to do. It's referring all over my right leg and around my groin, and going to the loo is a nightmare, especially for emptying my bowels. I'm seeing my myofascial release therapist in half an hour and hopefully will get there and back without collapsing. I'd cancel, but if this is anything to do with muscles being knotted up causing problems, she's the woman to deal with it. She doesn't specialise in pelvic pain, but she does specialise in fertility, which is pretty close. My bladder's not so bad today, at least. I feel really awful, if I hadn't improved with lunch there's no way I'd be safe to go out. Thankfully the support worker who was in today is a sensible woman, and confirmed that I'm looking a lot better than I did earlier. I nearly collapsed after showering. I am trying to work out what I can do if it's an inflammatory thing, apart from continuing to hydrate and rest.

I already drink 3 litres a day as commanded by the cardio, with salt in my water bottle and the occasional glass of Nuun, plus I salt my food. I decided to try adding some salt tablets as a lot of people with POTS and ME/CFS talk about using even more salt, and bought these electrolyte/salt tablets. I have moderate/severe ME, generally not too bad these days, but a bit exhausted from a lot of overdoing it lately. In terms of POTS, I'm on ivabradine, plus mast cell meds (no, I don't have a specialist in any of this), and between those it's improved quite a lot. Eerily stable heart rate, blood pressure too I think, no more fainting or getting mild anaphylaxis from standing up, though I still get some problems such as getting really cold (and then hot! and then cold! and then both at once!). Anyway, here's what happened. Friday - took ten of those tablets, sensibly spaced over the course of the day. This should have been the equivalent of two of my 800ml water bottles when they have salty water in them. Drank about 4l total. Vulvodynia, which had finally gone away for the last few days, attacked again in the evening. Saturday - woke early due to being very breathless, and felt absolutely awful all day. Had two salt tablets in the early morning before I put two and two together. Sleeping quite a lot, big ME crash, breathlessness and temperature fluctuations in particular. Apart from when I had the flu in the spring, I haven't been this ill in, hmm, perhaps a couple of years. Sunday - doing a bit better, managed to shower and dress, pottered about the flat. Took some tramadol for muscle pain (fibro). Threw up from the tramadol, which has only happened once or twice before. I think this is when the pain at the front of my right thigh started. Absolutely no idea what that's about, I've never had it before. Monday - Recovered enough for a wheelchair trip out with my partner, huzzah. Though I should have brought warmer clothing, and we both found the music playing in charity shops made us feel ill and we fled fairly quickly. Vegan cooked brunch at a local pub we go to frequently, for what that's worth, and dinner involved a fair helping of gravy from a tub, so perhaps I've been eating too much in the way of MSG or something. Although I still wouldn't expect this reaction. Today - Fairly shattered again, though nothing like Saturday. Took ages to wake up properly, fuzzy-headed, which has been a thing for months, and wasn't helped by the GP ringing to discuss pain meds. Thigh is still sore, vulvodynia is fairly painful. I'm starting to suspect a UTI: mild dull pain in my bladder region, going to the toilet a lot (there's nothing like a cat lying on you when you're in bed to make you notice that you only went to the loo a short while ago. She's been forgiving me and coming back to sit on me. In her opinion, I need to rest in bed a lot at the moment, it seems) though probably not that much more than usual, feeling like my bladder isn't quite emptied when I do go. Between that, the vulvodynia, and emptying my bowels being surprisingly painful considering that I wasn't particularly constipated, I'm dreading toilet trips by now. I've just taken my temperature and it was 37.2. It was 36.7 this morning, normal for where I am in my menstrual cycle (period due soon), and apparently your body temperature varies by about 0.5 a day and peaks around now, so that doesn't seem to be a fever. Obviously the bladder things may be a UTI, but do any of the others tie in with that, does anyone know? And can this be set off by the sort of electrolyte tablets I took? If I feel like this in the morning, I may ring the GP, but in my experience they just hand out antibiotics regardless, plus I've had many situations in the past where I had cystitis-like symptoms but my urine sample was fine. I was eventually diagnosed tentatively with interstitial cystitis, but it's been fine since I had a cystoscopy and bladder distention four years ago. Also I'm meant to be having a myofascial release treatment for the fibro tomorrow. She is finally getting somewhere, last week's treatment was very painful but did great work on a nasty knot of trigger points, and since those trigger points had been causing a hellish pain flare for the last couple of months (and I have not much in the way of usable pain meds), that's a huge thing for me. So I'm not sure whether to go to that or not.

Also curious, since I seem to have had an almighty bad reaction to mine too!

I like the taste, even in my drinking water. So I put 1/2 tsp salt in a 800ml/27oz water bottle. It's not pure sodium chloride, I add a bit of low-sodium salt, so that what I get is mostly sodium and a bit of potassium. Then I salt my food (with ordinary salt, the low-sodium stuff tastes vile), and sometimes have a Nuun tablet in water if I fancy something with taste, or if I'm out. Still, I would like to see how I do on more salt, so I've just bought these electrolyte tablets that you swallow whole. It's 210mg sodium (i.e. 530mg salt) per tablet, which is apparently the same amount as half a pinch of salt! I've portioned them up with ten tablets a day (i.e. 2g salt/1g sodium) per day, and will take them throughout the day and see how I feel on that. The good thing about its being such a low dose of salt per tablet is that presumably you don't get a big amount of salt in your stomach all at once, it must be more like the dilution you get with food. I'm feeling a bit brighter today than I did before taking a few tablets. Although the vulvodynia, which has been flaring up on and off recently, has flared a bit, so I will have to keep an eye on it to see if the salt tablets are the culprit.

The Adobe Reader problem's been there for a week or so, so rebooting won't help. Good point about updating, I'll try that. Here's what happened during my TTT last week: 1. Temperature problems - feet and hands got colder, torso got very hot and sweaty. 2. Breathing problems - particularly bad at start, then on and off for the rest of the test. 3. BP drop - 115/85 or thereabouts when lying down, lowest was 86/76 standing, lowest PP was 94/76. Wasn't always that low, though, it went up and down. They were only checking it every 5 min. In my experience, it goes up before it goes down, but then I check it every minute if I'm doing a poor man's TTT. 4. Dizziness - I can't even remember if I bothered to comment on this, it's something I regard as normal by now. Drat. 5. Visual disturbances - started after a few minutes. Floaters etc. rather than a full blackout. 6. Convulsive jerking - started halfway through the test and kept on going on and off for the rest of it. 7. Muscle pain - particularly around head and shoulders. I had trouble keeping my head still, they kept having to mess around with pillows. Between that and the jerking, I don't think I stayed very still for the test. A lot of this will be because I have severe ME and had overdone it for the few days beforehand, on the cardiologist's instructions. 8. Itching - very mild, not even sure if it happened at all. This is unusual for me, normally I get intensely itchy if I stand still. 9. Heart rate - didn't get the numbers, but I could tell it hadn't gone up much, and they confirmed this when I asked. I have no idea why that one's so inconsistent for me, unless it was due to the prochlorperazine I'd taken about seven hours earlier. Unfortunately, I think I'm going to be told I failed the test, that this wasn't enough. I failed the Holter monitor because I did faint. This is getting farcical.

I've got Auditory Processing Disorder, which is a neurological disorder. I have definite preferences in terms of which side sound comes from, that sort of thing, and I find it much easier to use the phone on speakerphone than to hold it up to my ear.