Batik

It gave me insomnia and low appetite, the opposite of what's expected! Plus gastrointestinal problems. I don't know whether it helps some people with POTS, but you get very mixed results when it's used for ME, which I have. A friend of mine with ME does well on it. Proceed with caution and keep notes on how he's reacting? Personally I do best with darkness therapy for sleep (should come up if you Google it). Temazepam if I'm having the odd bad night, but it's a benzodiazepine so only suitable for occasional use.

Different parts of the body are at a different temperature, so the same number will be a fever for one area but not for another. I think Wikipedia explains this thoroughly, with numbers. I'm not sure how accurate ear thermometers are. They're popular because they're convenient. Mind you, hospitals use them, but I've found hospitals to be very inconsistent on what they consider to be a fever. I hope the girl's doing better now.

For me it's more about light exposure. I had Delayed Sleep Phase Syndrome for years, until I took up darkness therapy, which involves filtering out the wavelength of light (465nm, blue) which suppresses melatonin production and thus keeps you awake. I uses to be most alert in the evenings, and thus, ore likely to do activities, but that pattern's changed now, and I go for gentler things that allow me to wind down. Watch out for computer and TV screens. They emit an awful lot of blue light, and it's one reason why they tend to keep you awake. And yes, if I have a bad night's sleep I feel like **** the next day. Muscle pain, headache, dizziness, and generally feeling like a dead rat.

I've been wondering about this, since I drink salty water rather than a branded electrolyte drink. It's easy to include potassium, you just put some low-sodium salt in the mix, but what should the proportions be?

Please make sure you're getting salt with the fluids, otherwise you're at risk of water poisoning, which can be fatal. My friend's ex-partner, who had severe ME and almost certainly POTS, died of this at the age of 28 two months ago. I'm afraid I don't know about IVs and such, I'm still getting sent around specialists, but best of luck.

In the one study done on deaths with ME/CFS, average age of death was 55. And a lot of us here have ME/CFS.

I had a nightmare time of it with gabapentin withdrawal. It went on for months, both while I was tapering off the drug (reducing by 300mg a week, much too fast) and for months afterwards. The insomnia in particular was horrendous. Please be careful with this drug group.

I put on a lot of weight, and couldn't lose it until I learnt how to lose weight properly. It's something you do need to learn, as it's very easy to get wrong. A lot of people don't realise that they're underestimating how much they eat, for instance, and apparently correct portion measuring can be surprisingly tricky. The book "Thin For Life" is excellent. The forum 3fatchicks.com is really good, though if you can't exercise (much or at all) for medical reasons, it's a good idea to say so firmly. I lost a quarter of my body weight while unable to exercise, so it's a myth that exercise is necessary. But not everyone with our medical conditions can lose weight, and I realise that I was lucky. Issie, are you following the MacDougall diet? I'm vegan, and I've had to be on a low-fat diet due to gallstones, but I must say I'm not keen on Macdougall. There's an awful lot of bad science in there.

Calcium deposits? I have calcium deposits in my shoulders, calcific tendinitis to be precise (the acute version is absolutely horrendously painful), and the doctors never could explain why I've got it.

For me it's been about dressing as best I can to cope with it. Layers, lots of cotton, two pairs of socks with fluffy thick bedsocks for the outer pair, cardigans which it's easy to slip off, several quilts on the bed so that I can adjust the bedcovers easily. Keeping my feet properly warm definitely helps. I have no idea why this flares up at some times and not others. It's been all over the place this last week, possibly due to stress and/or hormones.

Look up darkness therapy for the insomnia, by the way. It's a drug-free method of getting your body to produce its own melatonin at appropriate levels, by working with what colours of light you're exposed to. It's also done well in trials for rapid cycling bipolar disorder, randomly. My POTS got a lot more noticeable after the gabapentin withdrawal, now you mention it, but then I also had gallbladder surgery at around the same time. No wonder I had such a bad year of it in 2012.

I just put salt into my metal water bottle. I'm being fancy and doing a mixture of half low-sodium salt, half sea salt.

Thought so, but it was worth checking. It can be very strange to have a noise wake you up but stop by the time that you're awake enough to work out what it is. Isn't POTS strange, eh. I get a weird shaking/jerking/convulsing thing, but I don't start vibrating.

I've been following this thread with interest. Whenever I've tried exercise regimes in the past, I've increased the amount of exercise I do all in one block, enjoyed myself for a few weeks, then hit a huge ME crash that would take a lot longer to recover from. I'm now working on my exercise programme on the principle of not exercising for more than 1.5 min at a time, and checking that I don't go above the HR suggested for my age (111, since I'm 35). Could someone tell me more about this business of taking your HR first thing in the morning? I always take my temperature at 9am in the interests of tracking my hormonal cycles, and that would be a nice consistent time to take my HR. But right now I'm sleeping about 11-12 hours a night, for some reason, so it's nowhere near when I get up. When I do get up, I tend to have something get me out of bed before I have a chance to faff around taking my HR. Interestingly, I've found that setting up my mini exercise bike on the floor sends my HR up into the 90s, due to all the bending down and so forth, but once I'm sitting back and pedalling (it's about the same as a recumbent bike, I think), my HR gradually drops again! Whereas the exercise involving the roller slidey thing on the floor will take my HR up to about 103, although it feels comfortable to do and I'm not continuing to the point of breathlessness. That new pulse oximeter is proving to be useful.

This may sound daft, but is there any chance that there's building work going on near you? I've had a number of times when there's been building work nearby and they've used heavy machinery for half an hour or so in the morning only, just enough to wake me up thoroughly and stop me from going back to sleep. There was one wonderful time when they were resurfacing the car park near my bedroom window, and the machinery actually made me vibrate and made the windows rattle.

I'm deliberately drinking more salty water at the moment, and I can't really tell if it's helping. On the other hand, I once tried stopping all salt for a few days in order to flare up my symptoms nicely for a 24 hour ECG (Holter monitor), and felt awful without salt. I'm also one of those people who will keep adding salt as I eat if I'm tired enough that the effort of eating is exhausting me. I've seen people sit and stare at me in horror as I merrily keep salting the food! So I'm guessing that yes, I do need it, but it doesn't seem to cause a magic recovery. I'm not on any POTS meds yet, however, as I'm still going through the delightfully long process of diagnosis.

What's her blood pressure like, and is she staying adequately hydrated? A lot of people swear by electrolyte drinks, or at least water with a bit of salt in it. This is more aimed at the folks whose blood pressure tends to be low rather than high. If that's the case, it's probably one of the low-risk things to try. I was on that forum for a few months when going through gabapentin withdrawal **** a year ago. She has my sympathy.

Statix - I'm concerned to hear you're taking benzodiazepines without your doctor's knowledge. How are you getting them? They're not drugs you can just buy over the counter at a pharmacy. Considering that they're highly addictive drugs, they really are something you want to be using under careful and sensible medical supervision. Do you have a good relationship with your doctor, or if you have more than one doctor who may be relevant, at least one of them? I suffered through two years of bad premenstrual anxiety (PMDD, the nasty version of PMS) before someone finally suggested diazepam to me. I was wary of it because of its reputation, but by this point I'd built up a good relationship with my GP, and she knows that if anything, I'm drug-averse. She monitors my usage, I log when I take the meds and check in with her regularly, and as I don't get bad anxiety for more than a few bad days of anxiety a month, it's been fine for years. Low dose, never needed to increase it, never felt that I was wanting to take more. That said, I found out the other year that diazepam combined with cocodamol is the only thing that will touch migraine or muscular pain for me, and that's something I have problems with for more days per month. It's nothing to do with anxiety, it's because diazepam also functions as a muscle relaxant. I'm still managing to keep the usage to reasonable limits, and it's complicated as I recently stopped being able to tolerate cocodamol, but still, I'm going to ask her about trying me on the muscle relaxant group instead. I'd rather have something I could use more frequently and not have to worry about developing problems with tolerance. Of course, I get the impression that the muscle relaxant group are addictive/tolerance-causing as well...

My cousin has Ehlers Danlos, and I believe she has POTS. I've never heard the term used, but they were always talking about her tachy episodes. Of course, since she's been unable to stand up for about twenty years (due to leg problems rather than the POTS), that might complicate matters.

No idea, but I once had a horrendous time of it when taken to hospital after collapsing. The nurses stood around me yelling, "That's not epilepsy! She's faking it!" My GP has muttered something about vasovagal response.

Found it! Stickman Communications. Not quite perfect for this particular question, but plenty of food for thought. What do you make of their POTS card?

Yikes, the last thing I'd want is clothing discussing my illness. It'd give people even more permission to talk about it, along with staring at my breasts to read the text. There are a few places making badges, keyring cards and the like, and I think they've covered this issue. Personally I just tend to say, "Er, right... " in a voice which hopefully hints nicely that it was an inappropriate comment. Unless they go on at length, in which case they get a proper explanation of how ill I am. Being in a wheelchair doesn't help noticeably, because then they tell you that you don't look I'll enough to be in one!

The computer is a lifesaver for me, and as well as the laptop, I've recently acquired a tablet which I adore. It means I can finally read books again, after years of my eyes being bad due to the ME. I'm fond of audiobooks too. There's a whole world out there on the internet, though I would caution you to keep an eye on your stress levels. Hanging around too many illness sites (this is one of the saner ones, I must admit - the ME forums can get rather heavy), or other sites where people have bad manners (ever linked someone to a newspaper article with the caveat, "Don't read the comments"?), can turn out to be pointlessly stressful, and it's easy to get hooked in when you have nothing much else to do. I watch lots of TV shows too, you can get practically anything and watch it on a computer. Some people like the radio, though I've never really got into it myself. Crafting is popular for good reason. Most of my friends are knitters, and indeed I go out to a lovely local knitting group once a fortnight (my main social life!), but personally I am a quilter, and absolutely adore it. I may only be able to do a small amount at a time, especially since I've developed RSI in my hands and forearms, but I still have a wonderful time. Today I handed over a baby quilt I've been working on, on and off (more off than on), for nearly a year, and it was really great. The online crafting communities are generally good as well. I must say, I really envy those of you with gardens. I live on the first floor (in British; in American, that's the second floor) and can rarely get down the stairs, plus the nearest thing to a garden here is an overlooked gravelly area with some municipal-type shrubbery which is down two flights of stairs at the back, and it's not like there's anywhere to sit. I chat to my friends, both on instant messenger and over the phone or Skype. My knitting group is largely disabled (and queer, and green, and feminist, and generally lovely), so I've got a good support group there.

Yep, I've had this for years. Partly you deal with it by getting organised: making notes a lot (colour-coding can help, e.g. with computer sticky notes), using a spellchecker, dividing up tasks with headings and so forth, taking breaks, avoiding multitasking or any jobs that you find particularly difficult (e.g. listening and writing at the same time, such as taking lecture notes). Partly it's a psychological thing, and it's very hard to get your head around this happening. Counselling may help. I got ME/CFS in my first year at university, and my marks literally dropped to half of what they'd been at school. If I'd still been at school, they'd have spotted the change, but the university just assumed I was rather stupid, instead of realising that I was one of their brightest students. Thankfully, after having some years off and coming back part-time, I was given a note-taker for classes. She was a history lecturer and went to the trouble of taking me aside and teaching me how to write essays properly (at school, I'd been bright enough that I'd never really had to make an effort, I'd just been winging it, and this no longer worked). So then my marks bounced back up again. I have Auditory Processing Disorder, and have had since birth. I learned how to adapt to it young, so that for years the only sign was that I talk faster than most people. Then once the cognitive problems from the ME hit, the APD was amped up. I suddenly went from being able to scribble loads of notes during a lecture to being barely able to understand what the lecturer was saying, let alone to take notes. A friend of mine who also has APD and ME says exactly the same happened to her. Neurological problems such as APD, dyslexia, autism spectrum and so forth seem to co-exist quite frequently with ME, which in turn is common in people with POTS.

Is anyone else thinking of how the Minbari slept in Babylon 5?