Batik

I'm going through a bad patch right now, and I'm noticing problems with proprioception in particular. They're most annoying when I'm exhausted enough that I'm not really up to analysing the problem, let alone figuring out a solution and explaining it to someone else. I seem to do best without people in my immediate personal space, I find it very confusing if they are there and it makes me more likely to stumble. For instance, I live on the first floor and rarely get out of my flat. When I do get out, I always have someone with me these days, and they naturally try to help me down the stairs. I always ask them to give me a wide berth, as it is far more confusing to have someone by me, and to have to adjust to them, than it is to hang onto the bannister on one side and my walking stick on the other. I prefer to have them about half a staircase away, in fact, so that they're not bothering me. Something to do with vision, perhaps? Right now I'm finding it awkward when people are getting me out of the shower - my support workers are still poor at this task - and helping me to dress. I'm not very experienced in being helped to dress, and I keep on being bothered by people moving around near me and wobbling all over the place as a result. I honestly don't know how this works. I suspect vision's a component, and I am guessing that I may do better with people directly ahead of me instead of to the side, something to do with peripheral vision. I've had many occasions of all sorts where I've stumbled due to someone touching me or just coming very close, too. I'm generally clumsy, often drop things (gauging weight is hard), walk into things, am hugely worse in unfamiliar surroundings, and when my former partner was around, would accidentally elbow him quite often. Does anyone have a clue how this works, and how to work around it?

How do your fingertip monitor readings compare to your BP monitor readings? I've noticed that I'll get quite a wide range of readings after standing too. I reckon that's fairly usual, it's the irregular beeping that suggests that my heart beat is actually uneven (rather than simply fluctuating rapidly) which I suspect is dodgy. A heart rate which was speeding up and slowing down a lot would be one thing. Beeping that starts off rhythmical and then goes all over the place is another. It's hard to describe, is it making sense? Imagine a regular drum beat, and then the tempo changes, so that it gets faster and slower, but it's still a regular drum beat, being performed by a professional drummer. Now imagine letting a child whack a drum randomly. The first is what I think my heart is doing. The second is the way my blood pressure monitor beeps on occasion.

Angela - I think that fingertip heart rate monitors are meant to be better for heart rate. I always suspect that the act of inflating the BP cuff alone will be affecting my HR in some way.

Has anyone else tried putting a finger on their pulse at the same time to see whether that's as irregular as the beeping? Presumably there actually are people experiencing irregular heart rate as well, I'm just saying that in my case it seemed to be a weird part of the BP monitor as opposed to an actual irregular heartbeat.

Myalgic Encephalomyelitis, also known (less accurately) as Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome. There's a very high crossover rate with POTS. According to that poll I put up recently, it seems that around a third of the people on this forum have ME or CFS. I'm still trying to get a diagnosis of POTS and am new to the whole thing, so right now I'm finding it hard to tease apart which symptoms are specific to ME, which to POTS, and which occur in both. There's so much variation going on.

I use a blood pressure monitor, and noticed a while ago that sometimes, when it was beeping in time with my heart just before giving a reading, the beeps were irregular. I was concerned that this meant that my heartbeat was irregular. Then I tried taking my BP a few times with my finger on the pulse in my neck, and realised that the irregular beeps weren't actually reflecting my true pulse, which was pretty steady as far as I can tell (and I used to be a percussionist, I have a good sense of rhythm). I also had one day when it gave me a HR reading of 71 immediately followed by 135 even though I was lying in bed, hadn't moved, and felt fine. The next reading was 70-something, and they were all taken very close together, so I reckon that one was an error too. Any chance it could be something like that? I hear that BP monitors really aren't the most accurate way to assess heart rate.

E Soskis - I'm still new to POTS, but I know that with ME, sensory problems of this sort are common. They're also common in autism spectrum disorders, I have a friend with Aspergers who gets all of this and we swap coping strategies. I've also been diagnosed with Auditory Processing Disorder. I saw a hearing therapist for it once, and she gave me in-ear white noise generators to help me with the hyperacusis (oversensitivity to sound) and also to help block out unpleasant sounds, for instance when out shopping. Earplugs are the wrong approach, they make the hyperacusis worse. These days you can probably just put on headphones and a recording of white noise. It might be worth trying.

Some hormonal contraception suppresses ovulation but still causes a period of sorts (breakthrough bleeding). Some suppresses both ovulation and bleeding. Some will allow ovulation but suppress bleeding. Some will allow both ovulation and periods, as it's working in a different way to prevent conception. It's very individual, for instance not everyone gets bleeding suppression on Mirena, and only some people on it continue to ovulate. Don't assume that breakthrough bleeding instead of a period means you're off the hook for symptoms, as there's still a hormonal fluctuation going on, and in fact for some people the symptoms may be even worse. I'd say this is an area for experimenting with caution, and bearing in mind that our culture does not prize women's health and reproductive rights highly, so that a high side effect rate is accepted for contraception where it wouldn't be for other medication. Causing fertility problems later on - not as far as I am aware, but it can take up to a year for hormones to return to normal after coming off hormonal contraception, so if you want to start a family very soon, that's something to bear in mind. Is suppressing menstruation bad for you - not in and of itself, no. There's no reason why a woman needs to have a period every month, and in fact women today are generally having far more periods than earlier humans did, between the longer lifespan and fewer pregnancies. However, you may not get on with the medication taken to cause that effect. If you find that you prefer not to have periods but aren't feeling good on the specific med causing that, try a different one.

According to my eye specialist, there are two problems with fluorescent lights. One is the flicker. The other is the colour. If you look at a spectrographic analysis for fluorescent light and then for incandescent light or daylight, you'll notice that the fluorescent graph is wildly spiky whereas the others are smooth. I forgot to mention the cheaper alternative to having your eyes properly assessed for colour. Go to an opticians, one where they have fluorescent lighting, a decent range of trial lenses for sunglasses, and don't mind if you spend half an hour or so messing about with them. My local optician's, for instance, has several shades of the following colours: pure blue, pure yellow, pure pink, grey, brown, and dull green. My specialist had actually narrowed it down to grey or purple when she assessed me, and messing around at the optician's helped me determine that I was better off with grey, as I could at least combine the blue and pink to form purple. You end up looking through one big round lens rather than two, however, as they usually only have one lens in each tint, so you end up trying to form a sort of tunnel around the lens and looking like a Dalek. Of course, it helps if you're going to have the specs made up at that optician's. Another easy option if you don't need prescription glasses: just buy very cheap sunglasses in different colours. A friend of mine with an ultra-rare eye problem started to get bad migraines the other year, and by now has a big collection of cheap sunglasses from when she's bought them in a hurry while she was out. How do you get diagnosed with photosensitive epilepsy, especially if you don't have seizures? I basically got the impression that it's neurological symptoms that are part of the ME which are being set off here. I generally have problems with sensory overload, so noise, smells and crowds all cause problems as well. Simply being in a hospital can cause collapse from sensory overload, even with the tinted specs, though it was worse before, and at least I don't get migraine triggered by the lights if I have my specs on. A hat can help as well.

It's very common for fluorescent/low-energy/strip lights to trigger a variety of symptoms. My eye specialist reckons that 90% of people with ME have visual problems, for instance. Tinted lenses can help. She's assessed me to find the best colour that works for me, as it tends to be a very individual thing. My previous specs for wearing under fluorescent light were tinted blue, and my current ones (which I think work better) are 50% grey. It makes a massive difference for me. It may be worth finding out whether anyone near you does colour testing for dyslexia, as they may be able to help you find the most comfortable colour. In my experience, the best way to test is to try reading under fluorescent light with the different tints, and also to try looking at the strongest fluorescent light you can bear.

Heat - I have an electric heating blanket which I adore. Miracle Ball Method - read the reviews on Amazon, that'll explain it. Best thing I've found for releasing muscle tension in the back in particular. It's a softish grapefruit-sized ball, you lie on it in various positions and do deep breathing, and if desired, exercises. Then your muscles miraculously unwind around it. I find the results better than massage, and since it's a one-off purchase, you can do it every day, which you can't with massage. Tiger Balm - can have its uses, though be careful, it's not something you want to get in your eyes or other tender areas. Stretches - if you use a computer a lot, try Stretchclock.com. It brings up a video every hour (or how often you choose) with nice easy stretches designed for office workers. My personal pain meds for muscle pain are co-codamol with valium, it's the only thing that touches muscular pain or migraine for me. But it's heavy-duty stuff, I only take it when the pain is severe, and I certainly wouldn't run around recommending it to everyone. My main point was that it can be worth playing with combinations of meds, as drugs which do nothing for you on their own may work if you combine them with something else.

Any idea what's up if it takes longer than 10 min to get the >30bpm increase? In my case, it can be up to 15 minutes. I don't know how much of this is down to the extremely poor quality of my home tests with my amateur blood pressure monitor, which takes time to inflate, rather than using beat-to-beat fingertip testing, as I've heard Newton recommends. Also I rarely manage to test from lying to standing, usually it's from sitting to standing, and despite my best efforts, I tense up leg/buttock muscles to stop myself from falling, and often sway or fidget. Sometimes I'll have my HR go up something like 27 in the first minute or so, and then shoot up another 10 at about 13 or 15 minutes. Meanwhile my BP will be donig gymnastics, often including alarmingly low pulse pressures such as 15 at various points. Randomly, does anyone else get itchy a few minutes after standing? Or suddenly break out in a sweat?

There's a difference between "most people with POTS can't work" and "most people on this POTS forum can't work". The ones with POTS who are able to control it due to treatment, and to work as a result of this, are far less likely to be on this forum. So there's a strong negative bias which should be borne in mind. For the record, I can't work, but then I don't have a diagnosis of POTS yet, and have no idea how I'll fare if and when I receive treatment.

I actually stocked up on some prepackaged stuff when I collapsed the first time, on the 9th. Then I developed a UTI shortly afterwards, and naturally everything that I had bought was spicy. Only slightly so, but enough to irritate my bladder, and indeed the soup I had already consumed was probably doing a good job of that. There are a few things around, but yes, they tend to be pricey. Take-aways even more so, and money is going to be very tight for a while. I might stock up on tofu and noodles from the local Chinese supermarket, though. Not the cheapest thing around, but nowhere near as bad as ready meals, plus they're bland and easy to prepare. I'm getting better at eating, at least, and should be getting enough support that I get cooked for. I made it out today! I was a bit dopey, and the Auditory Processing Disorder always makes hearing a problem as the cafe has enough background noise, but it was very nice. There were five of us, the rest knitting industriously, plus a random bloke who was sitting on one of our sofas but eventually fled - and that was before we got to the gynaecological discussion! I was a bit tired on returning but seem to be OK. Though I do need to rest properly now, as I've just spent three hours chatting to a friend, including fishing out quilting blocks and discussing how to quilt them, which was most therapeutic. Head is definitely improving, though I'm sure the crash is still due. Any thoughts on how much water I should be drinking? I suppose I should keep making up those drinks with low-sodium salt. My bladder's still sore on and off, and by now it's just gone nine so I don't really want to be drinking too much, in the interests of not running to the loo all night. I don't think it's so much that being social stresses me out, as dealing with horrible things like social services (who are already showing signs of screwing me over yet again) and welfare benefits. They stress everyone out, and they are absolutely not sociable. P.S. Marmite is fab, but not all Brits like it. And admittedly I don't eat it often myself.

Mental healing, definitely. I'll see how I feel in a few hours. Right now it's always bad when I wake up, my mind's on a hamster wheel. It wasn't allergic type throat closing up, it was the sort you get for psychological reasons, when it hasn't actually closed up, it just feels that constricted. I think mast cell problems are quite possible, but it all came to a grinding halt when I tried to get it investigated due to a crap dermatologist (NHS, before anyone tells me airily to get a second opinion - I don't have that option). Hopefully the specialist I plan to see for the probable POTS will be good enough that she can get me assessed for MCAS if need be. You can't get food allergy testing done over here. The food suggestions are very American, half of it isn't stuff I can actually get over here, and sweet potatoes take far longer than we have available for anyone to peel, but thank you anyway! I actually managed to get a proper meal down me last night. Pasta with a tomato sauce we'd put vegemince into, so hopefully quite nutritious, and there's two portions of sauce left over. I even got vaguely hungry last night and nibbled on this and that. I hopped on the scale this morning and I'm only down a pound or two, thankfully.

By the way, totally random question: how many people with POTS make a decent recovery or partial recovery once they get treatment? I'm suspecting that this forum is biased towards the people who aren't doing so well, since they have more need for a support forum, as such forums usually are (the recovery cases being off doing other things). I could really do with some hope for the future right now, and after 15 years of having ME, which is untreatable, the possibility of having something which can actually be treated is almost unthinkable.

Do you find that wholegrains make a difference? I do much better on, say, brown rice or wholegrain pasta, than I do on white rice/pasta, and far, far better on complex carbs such as those than on sugars.

Thanks for the support, everyone. So far we have one vote for and one vote against going out tomorrow! Any thoughts on how to calculate whether I'm up to it? My current thinking is that I'll see how I'm doing tomorrow, but I'm leaning towards going. Mainly because I'm more worried about my mental health than my physical health at the moment. I know I only asked advice about the physical health stuff, but that's because I already have sound advice on the other: talk to friends, talk to helplines if need be, mainline silly TV shows, mess around with fabric a bit when I'm up to it (though no quilting my hands into another RSI attack, of course), general taking care of myself. The problem with the physical stuff is my body is absolutely all over the place right now, and I'm finding it very hard to think my way through things, let alone work out how to pace myself. I've had a short set of Bowen technique treatments provided free through my local ME group, and when my Bowen therapist was here on Thursday, she commented that my shoulders felt absolutely rigid, the worst she's ever seen them, but I was feeling practically no pain at all. Which is what made me realise that I'd been running on adrenaline for three days straight. I'm trying not to pace when I'm on the phone, but that's the main obvious thing so far. Should I be going for lots of salt? Is there any particularly easy way of getting lots of salt into me? I find that wrapping myself in my electric heated blanket is good when I'm in a basic immediate crash, the sort when you're chilled and ache all over. Does anyone know if that's likely to promote healing during this sort of episode, or should I not bother unless I'm actually chilly? In terms of food, I'm vegan, that's probably worth knowing. My friends have been saying that at this stage, never mind nutrition, just get anything we can into me. My throat no longer feels closed up, but my appetite is still almost entirely absent, I'm finding most foods unpalatable and/or far too strong-tasting, and I'm not up to cooking, so we're reliant on what's in and what the support workers can make for me. Boiled carrots and potatoes have been relatively popular so far, although it's not exactly what you'd call substantial. I've been having diarrhoea for the last few days too, not sure why, quite likely the stress (although I do wonder a bit, as the hospital told me to watch out for that when they discharged me with the UTI a week ago).

I've been doing fairly badly lately. ME's not great, gabapentin fiasco at the start of the year, then gallbladder surgery, then worse ANS symptoms including several collapses, culminating in a trip to Accident & Emergency last Friday, where it turned out that I had a bladder infection too. (According to my latest urine sample that's now gone, but I'm still having problems with bladder pain and urgency, and then there's the diarrhoea too. Possibly just IC and IBS.) On Tuesday my partner left me. I'm doing better than the first two days, where the PMS hit badly and it was wall-to-wall panic attacks, but I'm still doing pretty badly. I'm exhausted, terribly upset, going between being flat out in bed and running on adrenaline, finding it very difficult to eat. And I'm desperately scrambling to sort out welfare benefits so that I have money to live on, and social services so that I can get more care in the home, both of which are a nightmare to deal with by anyone's standards. I was already housebound and largely bedbound before this happened. I don't have a diagnosis of POTS yet, we were going to try to get me to a specialist at some point, although my symptoms and home BP/HR rate readings are highly suggestive of it. So I'm not on any treatment for it, though I do sometimes make myself an electrolyte drink, which at the moment is the very basic version using low-sodium salt (so there's plenty of potassium). I haven't been managing to get that down me, though, I'm barely managing to get about 600-700 calories into me and generally not doing well at the whole eating/drinking thing. I'm already getting good advice about the emotional support side of things, and we're strategising about the food, but can anyone give me any tips to minimise the damage physically? I'm in the UK and using the NHS, if anyone is going to suggest specifically medical stuff. For instance, my friends are urging me to come out with them tomorrow to the knitting group (sans knitting, or in my case quilting, but no one cares), just for the sake of getting company and fresh air. I can't figure out whether it's worth the energy expenditure, considering how exhausted I am sometimes getting and that my ability to pace myself has gone out of the window. They'd be giving me a lift there, and hopefully we'd be able to use the sofas at the cafe in question, which has nice natural lighting and isn't too noisy as such things go.

Further update: two days ago I collapsed again, quite badly. This time I had someone with me who had sense, my support team leader, so she called an ambulance and my partner, and I ended up spending 4 hours in A&E. They noted in the ambulance that I was tachycardic, but the doctors at the hospital were neither interested in that nor in the blood pressure problem I was reporting (I'd been testing it that morning). Apparently 109/90 is a perfectly healthy blood pressure - none of them seemed to have heard of pulse pressure. They were mainly interested in the fever, and ran a variety of tests, including an ECG and a chest x-ray. Eventually they diagnosed a UTI and gave me some antibiotics. They had no idea why I was jerking convulsively, except to say that it didn't look like epileptic convulsing. Note to self: do not say "Much better, thanks," when doctors ask you how you are. At least, not when your definition of "much better" is, "I can't turn over without getting breathless and I black out when I stand up or even sit up, but at least I'm not breathless the rest of the time or shaking like crazy!" I think they figured it out when I used the commode before leaving and went through all the usual shenanigans from getting up, including about 20 minutes of jerking. I don't know what's normal with a UTI, but I don't think this level of collapse is. So hopefully when I go to my GP and say, "Look how much I'm collapsing," they won't just pass it off as the UTI and refuse to investigate. Probably rather foolishly, I did another poor man's TTT just now. This time I went from lying propped up to standing in a corner; the other times have all been from sitting to standing. I tried not to fidget but I couldn't prevent myself from tensing my leg and buttock muscles, as otherwise I wouldn't have been able to stand. I'm wondering if that's why it took a while for the HR to peak? Lying down, propped up on pillows - 101/60, 66 After standing 7 min - 107/79, 85 After standing 15 min - 112/79, 99 There's less of a variation in BP there than I've been getting, but the HR increase was 33. The machine usually beeps for each heartbeat from about halfway through, and normally that's regular. Today it was wildly irregular. I have no idea what that means, although the middle of a UTI is possibly a bad time to be checking anyway.

39 votes so far, and certain patterns are starting to show up. About 20% of people so far don't actually have a POTS/ANS problem diagnosis yet, though apart from one missing person whom I am chalking up to error, we think we probably have it. ME/CFS/FMS rates are holding steady at a third, and that's only counting the ones who've actually been diagnosed. That's very high, and may explain a few things such as why some people improve when they exercise and some people just can't tolerate it at all. Migraine was equally common, and evidently is the easiest thing on the list to get diagnosed with. Mast cell disorders are evidently difficult to get diagnosed with and/or one of those things that lots of people think they have, but turn out not to. The vulvodynia mob seem to be early voters, and while it's not that big a number, again I think it's a fair bit higher than for the rest of the population. Ehlers Danlos isn't as high as some of the others, but considering how rare EDS is, it's still significant, and it seems to be vaguely around in terms of familial history and suspected-but-not-diagnosed. Most of us have at least one of the conditions listed in our family histories, too.

How are you measuring your pulse? I've heard that home blood pressure monitors may not be sensitive enough to pick up the changes on standing.

I've seen narrow pulse pressure defined as anything under 25. Mine dropped to 19 this morning. I ended up collapsing after lunch and being taken to Accident & Emergency, where they were almost entirely uninterested in my BP and HR (which were moderately well-behaved while I was there, although my pulse had got up to 114 this morning), and didn't seem to think the low pulse pressure was an issue. Oh well. They did at least check me out thoroughly, eventually diagnosed a UTI infection, and agreed that I needed to see that specialist I was mentioning ASAP.

Done.

I'm new here, and still don't know whether I have POTS, but I'm noticing that certain other medical conditions keep coming up over and over again. So here's a poll for some of the more common ones. It's not public, people won't be able to see your individual answers. The one condition I added which I haven't seen mentioned here is autism spectrum, but I know that there are a lot of people here with ME/CFS, and there's a lot of overlap with ME/CFS and autism spectrum, so I'm curious to see what shows up there.