Batik

4'11 and now 101lb, but over the last year I've lost 40lb. I'd been slim as a teenager and young adult, put on weight in fits and starts with the ME, and am now back to my teenage weight at the age of 34. My blood pressure was normal when I was overweight and is back to being low now. I stopped losing weight in March, and while I felt more energetic while losing, I've had more ANS problems since then, particularly with body temperature. On the other hand, I had gallbladder surgery in March as well, so it could be that. I haven't read the whole thread, but in case no one else has brought it up, the gender imbalance just shows us what is true of this forum, not what is true of POTS patients overall. Women are more likely to go to support groups and similar than men are.

Perhaps the higher charge is because you get much more use out of it, and they're relatively expensive to produced compared to your average box of pills? I haven't tried them myself, still chasing a diagnosis, but I have wrist splints which were handed to me free of charge by my physio. But then I'm in Scotland, where prescription charges have already been phased out. Hah, I didn't even put in half my diagnoses! My migraines are mainly menstrual, so the first thing I do is Fertility Awareness Method tracking to give me some warning of when the nasty things are due. It's not much, but at least I can make more effort to sleep and eat well around my periods. Anyway, I take co-codamol and valium, which I discovered quite by accident one day when I was desperate enough to hope that the combination would conk me out. It's the only thing that works for muscle pain for me as well. Valium is a muscle relaxant, and the combination works where the individual meds don't do a thing for me for those issues. Obviously those are not meds you want to be taking too often, I'm careful to log how much I take, and the side effects are a nuisance. The first time I took it, I fainted the next morning, and I rarely faint. Plus constipation and over-sedation and so forth, but if the pain is bad enough, yep, it's worth it. Have you found anything that works for you? I see you have vulvodynia too. Either I'm looking at the same people all the time here, or that seems to turn up a lot. Is there a link with POTS and its friends, does anyone know? Mine's flared up horrendously recently, and again it's mainly triggered by my periods. My gynaecologist wants me on the mini-pill to see if eliminating my periods helps, although I'm dubious as I don't generally do well on progestogen-only contraception. I suggested the combined pill taken continuously, but she nixed that because of the migraines, not that I'm particularly worried about stroke. Last time I got a vulvodynia flare I was on co-codamol, valium and tramadol, and it still wasn't getting all the pain, but by that point I was pretty much too stoned to care. Really not a good situation to be in. It's a really horrible place to have pain, isn't it, it gets to you. I don't seem to fare well on amitryptiline for chronic pain, or gabapentin for that matter. Apparently my local pain clinic is pretty much useless, so I'm starting to feel a bit stuck in terms of what to take for chronic pain. Come to that, how many other people here have chronic pain issues? I have ME and fibro, so it kind of goes with the territory. Are there any polls about how many people here have ME or fibro?

More observations from today: I really can't manage standing dead still for more than a couple of minutes (and probably am doing a bad job at that), but during that time my HR is going up at least 24, and my pulse pressure drops dramatically. I've had two pulse pressure readings of 23 today. I'm trying to take things gently in terms of getting this investigated by my GP, so at present I've sent her a letter explaining how bad my autonomic symptoms really are, and asking for a 24 hour blood pressure ambulatory test, which they've muttered about in the past. Do the 24 tests tend to work out well for people with these sorts of problems, or do they miss out on stuff? With my current sets of readings, I may be trying to target certain moments, but even so there's enough weirdness going on that I'd hope they'd flag something up. I've been fobbed off so many times that I'm worried that I'll be told yet again that there's nothing worth investigating.

I can highly recommend the Dry Eye Zone for anyone with problems in this area. And if you're considering eye surgery to correct short-sightedness, please acquaint yourself fully with the very substantial risks. My mother has map dot fingerprint dystrophy and recurrent corneal erosions, I wonder if that's an autoimmune thing as well? I just have mild dry eye myself. Also I have a cousin with EDS, which seems to come up a lot these days.

Please be careful taking clonazepam or any other benzodiazepine for more than occasional use. There's a high rate of addiction, tolerance and dependency. If you have been on these meds for a while and have decided to come off them, then please make sure you get proper medical guidance and an appropriately slow taper. If you are finding that you need to raise the dose to get the same effect as you did before, then seek medical advice. I use temazepam and diazepam occasionally, but I always monitor how much I take (in writing) and am careful not to take them for too long.

Good lord, no, that isn't! With this update, I have new and exciting measurements. The lowest I've had today has been 97/62. I tried taking my BP a few min after finishing supper, while sitting at the laptop, and it had gone up to 140/111, 84. I kept taking it for the next 16 min and it dropped to 104/68, then settled at around 112/67, 80. Then I tried standing up. The reading just after standing and moving the laptop table over to the wardrobe I was leaning against was 110/77, 100, and after 5 min of trying not to tense my leg muscles, it was 114/84, 103. Then I sat down again. So my heart rate went up quite fast, and quite possibly got higher than that but there's a limit to what I can tell when it's just me trying to work it out. (I think I read somewhere that Prof Julia Newton uses a fingertip method of pulse monitoring during testing, as this type apparently isn't nearly accurate enough.) And while the systolic pressure stayed the same, the diastolic pressure went up, which means that my pulse pressure dropped from 48 to 30. My HR has generally been a bit higher than usual today, and I'm wondering whether that's anything to do with bumping up the antihistamines. I might curl up in bed, watch an episode of something while trying not to wriggle about, check my BP at the end of that, then stand up and see if I can keep upright for longer this time.

Next question: what degree of blood pressure variation is considered normal, and what is considered way off normal? When I've tried to discuss my blood pressure variation with a doctor, I've been told that it's normal for blood pressure to go up and down a bit during the course of the day. And I'm sure it is, but I'm not sure mine falls within normal levels of fluctuation. I'm having trouble googling blood pressure variation to find the normal daily stuff, but so far there's this article which talks about a variation of +/-14.2 systolic, +/- 8.8 diastolic for normotensive Japanese subjects, and a smaller variation for people being treated for hypertension. Another study for women in America found a somewhat smaller range of variation. My blood pressure today has varied by 23 systolic and 20 diastolic. If I look at the readings I've taken in August, then the variation is 27 diastolic and 22 diastolic. For Feb and April, the other time I kept on testing, I get a range of 77 systolic and 61 diastolic, although that's based on one particularly high reading that was 30ish above all the others (167/103, 51bpm). I'm not counting all the times I got error readings, as I've only just been made aware that they were probably due to a diastolic number below 40 and didn't log them at the time. I assume that the +/- business with the study means that I should double their numbers to get the full range (as in 14.2 above and 14.2 below the average gives a range of 28.4), which gives a range of 28.4 range systolic and 17.6 diastolic. So I'm a little outside that for this month, and hugely outside it for the spring. Plus this isn't based on ambulatory screening, so my true variations could be greater than I know. My HR over this period has ranged from 66 to 103, including taking a reading after walking about for a minute, and is usually in the 70s when taken while relatively inactive (e.g. sitting at the laptop). My average BP for the year is 107/62, which is a bit higher than I thought, but then it's the low numbers which have been sticking in my mind. I usually take my blood pressure while sitting on the bed or lying in it, sometimes after attempting to stand up (wobbily) for a few min, and almost never during or after activity, or during or after a dizzy spell.

Frugalmama - hmm, quite a lot of that sounds very familiar. I don't have the opportunity of seeing an immunologist, though. With the NHS, you have to convince your GP to refer you to any specialists, and if they haven't heard of the condition you think you may have and are not interested in learning about it, that's it. Jangle - 5 min, right. If it's not a daft question, how do you keep yourself from moving while you're standing up? Last time I tried, I stood against the wardrobe, and even then I noticed myself flexing my hands after twenty seconds and gave up after a minute or two.

I don't have a Medicalert bracelet, but I do have emergency booklets, one in my handbag and one by my bed. I got them from an army supplier, they're A6 with 20 pages composed of transparent plastic pockets, so that you insert paper into the pockets. This means that you can update them whenever necessary, which with my long list of medical conditions is essential. I put Red Cross stickers (actually trimmed England flag stickers, it was the best I could find for some reason) on the front, which makes it obvious what it's for and also improves visibility, as the booklet came with a camouflage dark green cover that blends beautifully into the depths of my handbag. Inside, I have emergency contact details, a list of my medical conditions, a brief explanation of ME (if I get diagnosed with POTS, that bit will be getting rewritten), a list of the medication I'm on (both daily and for acute use), a pain scale (I need something to refer to, I'm hopeless with a basic "on a scale of 1 to 10, how bad is it?"), instructions on what to do and what to watch out for in case of collapse, and things like where I keep snacks, where my clothes are, where the emergency hospital bag is kept.

It's free if you're in Scotland. In England, it's free for certain groups or if you have a "season ticket" (prescription prepayment certificate) on your prescriptions. Unfortunately, it looks like the cost for "elastic hosiery" is £15.30 rather than the usual £7.65. More details here.

That's worth checking - a disproportionate number of us are talking about gallbladder removal - but there will be factors in common with all surgeries. General anaesthetic, fasting (prolonged in my case due to lousy pain management, i.e. I was vomiting due to the morphine), heavy pain medication, and the whole experience of being in hospital, for starters.

I don't know a huge amount about POTS yet, I'm still pursuing a correct diagnosis, but from my years of experience with ME, here's what I can tell you. 1. It's rare for people diagnosed with ME or CFS to get tested for POTS. It should be one of the things they test as standard when making a diagnosis, but those are generally relatively cheap and easy things such as blood tests for anaemia. Once you have a CFS/ME diagnosis, it usually becomes very difficult to access healthcare, including tests for other conditions. 2. There's huge symptom overlap, which is not made easier by the various different diagnostic criteria for ME/CFS and the likelihood that there is a high rate of misdiagnosis running both ways. I think it's very likely that there are some people wrongly diagnosed with ME/CFS who have POTS alone, some people wrongly diagnosed with POTS who have ME/CFS alone, and a large number of people who have both. I couldn't even begin to guess at the figures. In about twenty years I think they'll be able to tease this apart properly, but right now they don't have a clue. 3. Someone mentioned low-grade fever and swollen glands as ME/CFS symptoms. They're common, especially in the early stages, but long-term I'm not even sure if they're present in the majority of patients. There was a poll on Phoenix Rising showing that most of us have body temperatures which run a little lower than normal, if anything. I was very fluey in my first year of ME, and since then a fever has been extremely rare (though running hot and cold has increased as a problem, it rarely shows up on the thermometer), and I don't get much in the way of swollen glands either, just some mild tenderness from time to time. I'm not sure how typical I am. I hear those issues being raised a certain amount on PR, but not very much, and nowhere near as much as other symptoms. 4. Prof Julia Newton, who does research into both ME and POTS, has hypothesised that ME patients get increasing autonomic symptoms as the severity of their ME increases. I looked at that statement and thought, "Yep, that's it exactly for me," but other people on PR said it wasn't true of them. Some of them had bad autonomic symptoms from the start, some of them never got the autonomic symptoms even when they were severe. I think this could be down to misdiagnosis rates, ME and/or POTS, subsets and so on. There's a thread about this on PR somewhere. 5. Rituximab was mentioned. I know very little about this except that it's chemotherapy, it's been showing promising results, and it's too early to know much about what happens long-term. I also know that a few people think there are mast cell problems going on with ME (it seems to be a fairly new idea), and I gather that some forms of mastocytosis are treated with chemotherapy. 6. Condition changing with movement - hard to judge, since the primary symptom of ME is exercise intolerance and post-exertional malaise (PEM). I don't have a good feel yet for exactly how this works with POTS, so it's hard for me to compare the two. With ME, the worst of the reaction to exertion very often occurs some time later, typically the next day. However, symptoms will flare up enough at the time that the activity will be curtailed due to them. People with ME usually feel better lying down, and are very bad at standing up.

Yep, sounding very like what the ME patients get lumbered with. There was an article about "catastrophising" discussed on Phoenix Rising, where the article basically said that patients who think they will be bad at climbing stairs turn out to be bad at climbing stairs. Instead of concluding that these patients know their own bodies and limits, they concluded that the patients were somehow making themselves unable to exercise because they'd expected it. "Catastrophising" means "expecting to get worse without any foundation", as far as I can tell, but the problem is that it is applied precisely to the patients who have an excellent foundation for expecting to get worse.

This sounds suspiciously like the way ME/CFS patients are treated. You actually end up with a lot of very bad science, clinical trials not worthy of the name which report results to be the opposite of what they actually were (e.g. putting the "slightly worse" participants in the "improved" group), and governments following the recommendations because it saves them a lot of money if they don't have to give actual treatment to these awkward patients. Considering the massive symptom overlap, and the possibility that there are a number of patients with both conditions, I'm wondering if the problems with treating ME patients has bled over into POTS patients.

It sounds like you may need to weigh up how exhausted you'll get without a wheelchair vs. how unhappy you'll feel if your family have a go at you about it. Perhaps ask a friend to push you and also to keep your family off your back? I've known a few people who use those walking sticks that turn into seats, they rave about them. That might be a good compromise. There are lots of reviews on Amazon. I've not tried one myself, I've got severe ME and I don't think I could manage the weight or extra stuff (I trip over my walking stick quite enough already).

I don't think I have a hope of getting diagnosed with mast cell problems, unfortunately. I agree that it's looking likely, and people on the internet in various places have been telling me that I sound like I have it for a while now. When I went to the dermatologist, she looked at the brown lesions I have all over my abdomen, called in a thoroughly unimpressive colleague of hers to double-check (condescending prat in a bow-tie), told me that they were a type of wart, and that was the end of the matter. No skin biopsy, and now I don't think I have any means of getting one. (To anyone thinking that I should just go to another doctor, I'm afraid that's not how it works on the NHS.) She sounded quite convincing, but then managed to lose credibility by telling me that dermagraphism (which I have been diagnosed with) doesn't cause itching, and quite apart from all the sources on the internet contradicting her, the dermatologist who originally diagnosed me with dermo talked about how it causes itching! I can't get my GP to refer me again, because my GP has been getting odd recently, and flatly refused to refer me because of the lesions, kept on telling me they were either freckles or skin tags. I only managed to get a diagnosis in the first place by pointing out that the dermographism and eczema aren't being helped by medication. Issie - does that answer your question? My doctors aren't looking into mast cell problems, sadly. I've only been put on one antihistamine at a time, although the dermatologist said she wanted to increase that so that I was on more than one at once. I've been doubling up on the cetirizine out of sheer desperation, and without consulting my doctor. I'm still not sure what anaphylaxis with mastocytosis involves, but I don't think I get that. So do people with POTS never get symptoms apart from when they stand, then? By the sound of it, whatever's going on with me, it's more than one thing, which doesn't surprise me in the least. Jangle - hard to tell, I'm not quite sure at what point I should be pouncing on my heart rate when I stand up, since the dizziness usually hits me a few seconds later. Plus my blood pressure cuff is possibly too big for me, takes time to inflate and so forth. I read recently that Julia Newton, the specialist I'm interested in, says that a blood pressure cuff isn't a good way of measuring heart rate. Anyway, when I took it this way the other day, I was getting an increase of about 20 when I stood up, though I may not have been catching it at the right moment. My blood pressure was going up too, which is odd, I think in the past it's fallen, but perhaps I didn't wait long enough for it to fall. I've never managed to do a poor man's tilt table test successfully, I can't stand still for more than a minute even if I lean against the wardrobe, and of course the act of taking my blood pressure nullifies the test. Possibly I should try again with a support worker to press the button and record the results, if people think it would be worth it. My heart rate is usually in the 70s. When I've messed around with testing this before, my BP was varying more than my HR, but the other day my HR was varying a certain amount as well. To be honest, when I'm really dizzy, I'm not up to messing around with taking my BP, so it's probably deceptively good.

Speaking as someone who's been diagnosed with ME (also called CFS - the politics of that one are long and complicated), it's really not a good diagnosis to have. A lot of the time, as soon as you mention that you have ME, the doctor shuts down and refuses to look any further. From that point on, anything at all you report, including thunderingly obvious gallstone attacks, gets waved away as "it must be your ME". This is why I still don't know whether I have POTS or masto, and am having a nightmare time of it trying to get investigated for them. ME is better recognised than POTS, but as far as I can tell, POTS doesn't have all the nasty political stuff attached to it, and you do get taken seriously and offered actual treatment which is helpful. Patients with ME are generally offered either nothing at all, or two therapies which have been repeatedly shown to be useless at best and actually harmful in a huge proportion of patients (CBT and graded exercise). So if you think you have CFS or ME, you will want to weigh up carefully whether it's worth trying to get diagnosed with it. There's a good chance that it would simply make your medical care worse. It may be worth knowing if you are dithering over whether to have children, since there seems a high chance that it's inheritable, plus it affects your lifespan considerably (knocks off 25 years according to the one study I'm aware of in this area). But then diagnosis is very tricky and you end up getting misdiagnosis, running both ways, all over the place.

*has a quick look* I'm having trouble telling these similar conditions apart at the moment, to be honest. Could I ask why you suggested that one in particular? I don't generally lose consciousness, as far as I can tell, although I do enter what may be described as an altered state of consciousness. Also I don't always get this from standing up, although that's a common trigger. On Thursday I was in a wheelchair when it happened, and an episode a few months ago appeared to be triggered by heavy machinery noise/vibrations near my window when I was already lying down, along with a possible post-surgical infection. On other occasions, yes, the immediate trigger has been standing up, and it hits me a few seconds later. These falls/collapses don't occur very often, they're just one of the more frightening manifestations of whatever this is. I get various symptoms, including dizziness, temperature problems and crippling fatigue, every single day. Does that help a bit with the scale of things? I haven't actually bothered to write an entire symptom list yet as it takes so long, but I can make a stab at it if that would help. Also I still have the problem of how to get this looked into in the first place.

Will your family be there? I think the other main reason I hated using a wheelchair for years is that my family was nasty about it. When you have supportive people around instead, it's entirely different.

I haven't voted as I haven't been diagnosed yet, but I was told fifteen years ago that I have ME and it is looking extremely likely that I have POTS. No surgery beforehand (burn-out and flu were the obvious triggers), but I have been feeling absolutely dire since having my gallbladder out this March. Body temperature has been the main problem, they keep testing me for anaemia and low thyroid and I am becoming an expert in fingerless gloves and socks so thick I can hardly get my shoes on. I felt absolutely dreadful for the first month after the surgery, particularly being cold, and couldn't get them to do more than run some blood tests until I collapsed badly and an emergency doctor was called in. He decided that it must be a post-surgical infection as I was shaking, felt icy, running a low-grade fever, and barely able to move or speak due to weakness (my partner found me on the floor cuddling the quilt I'd grabbed on the way down). I got a week's course of antibiotics, felt reasonably better, and thought that maybe he was right. I think it might have been coincidence, though, as the main trigger that day was being very close to road-works that went on for hours and were so noisy that they made me vibrate. I've had other collapses that have been triggered by sensory overload and general exhaustion. Five months on from the surgery, I am still having a lot of problems with body temperature fluctuations, icy extremities, shaking fits, and generally feeling more wiped out than usual.

In practical terms, it sounds like a smart move. Check out what the wheelchair access is like, how hard it will be to get a wheelchair, and also make sure that you will have someone to push it (assuming you can't self-propel) and that you won't end up isolated from the rest of the group. If you have the option, get a wheelchair which has large wheels at the back rather than small wheels throughout. It's easier for the other person to push, and it's also handy if you want to get yourself a bit closer to things, for instance getting to a shelf in a shop. In psychological terms, it's a very personal thing. The first time I went out in a wheelchair, about twelve years ago, I was fairly nervous and found the whole thing intimidating. You can't reach a lot of things, you feel helpless, you're at child height, and you don't get looked at in the same way. I ran into a man I knew from university when we were in the supermarket. The last time I'd seen him, he'd been trying to get me into a bed (total lech). This time, he saw me at the other end of the aisle, stared at me, put down his shopping, and bolted. So I promptly burst into tears, and I think this is generally one of the reasons why it took me a long time to get used to wheelchairs. It really was bad luck to get such an unusually bad experience my first time out, though. I've also had great experiences in wheelchairs, and known people who did much better with them from the start. Smiling at people can help. You will get the odd look if you - gasp - get up and walk a few steps, but it's best to ignore the looks, and explain if you actually get comments (rare). I wouldn't say that side of things has been a problem for me, to be honest. What does make it a lot easier is reducing the other factors which could be distressing. Sensory overload does not improve matters. Being able to talk to people easily, for instance because they're sitting down and it's not too noisy, makes it a lot more pleasant. It's also important to think of a wheelchair as a tool that enables you to do more, that really helps. Zooming around hospitals (sensory overload ahoy) is far easier with a wheelchair, and it's so nice not to have to worry about simply getting from A to B. Going out for a spin just for the sake of getting some sunshine and seeing some trees, with someone who is perfectly happy to push the wheelchair and will have a chat, can be lovely.

Greetings everyone. I've recently become aware of POTS, and it is sounding suspiciously like I might have it. I was diagnosed with ME/CFS fifteen years ago, at the age of 19, back when it was hard enough to get that diagnosis and POTS wasn't recognised. I'm severely affected by the ME, which means that I'm almost entirely housebound and have to spend most of the day in bed. I've also had migraine since I was 15, and low blood pressure for a number of years. I cannot for the life of me to get the doctors to do anything about the low blood pressure (usually around 90/50) or related symptoms, however. They just pat me on the head, metaphorically speaking, and tell me, "Aren't you lucky not to have high blood pressure - you're less likely to get a stroke!" Thanks, that's really comforting to know when I've got this quality of life and am constantly having to be cautious in case I keel over. I've had too many incidents by now where I collapse badly, either at home or in hospital, and no one treats it as an actual problem. I collapsed when attending the dermatology clinic on Thursday (everyone online also keeps telling me it sounds like I have mastocytosis - no idea, the specialist was lousy), and I was just grateful that the nurses allowed me to lie down and got me a cup of tea. It didn't occur to me until afterwards that when a patient is almost entirely unable to move or speak, blacking out, shaking convulsively, hypothermic (well, icy cold despite seven blankets), and nauseous, that they should have got me to A&E. Horrible experience, and I've been feeling dreadful ever since, both in terms of my physical health and because this is getting scary. My health really isn't good at the moment, I'm ridiculously cold and generally quite feeble in terms of the ME, and I'm still having trouble picking up from the gallbladder surgery I had in March. A few people have recommended the specialist Prof Julia Newton in Newcastle, but I have no idea how I could get there, both in terms of managing physically and in terms of being referred on the NHS. The attempt at getting checked out for masto might have failed, but since they have me on anti-histamines and want to develop that school of thought, and since the main treatment for masto seems to be anti-histamines, it doesn't seem too big a deal at the moment. (If I get to Julia Newton, she sounds good enough that I could ask her about the whole mast cell/histamine business.) My GP has had me on four different antihistamines in the last few months, I'm not even quite sure why! I wasn't feeling great on the older ones, though I gather that may be tweakable, so I'm back on 10mg cetirizine. I actually went off it for a few days before seeing the dermatologist on Thurs, and I think it's one reason why I collapsed so badly - my sleep had been wrecked, for starters. I randomly tried taking an extra tablet yesterday because my legs were itchy, and while I ended up having to take a sleeping tablet again due to being awake, jittery and getting occasional shaking fits (would really like to know what's going on there. It seemed to start after I was briefly on gabapentin at the start of the year), my body temperature has actually been behaving itself since yesterday afternoon. The night before last, I was curled up trying to nap in three layers of clothing, four blankets, a winter hat, gloves and a heated rice bag on my feet. (No, despite what you've heard about Scotland, and despite the fact that we're having a really wet summer, it doesn't get that cold in August.) Last night I was able to watch a film lying on top of the duvet, wearing nothing but a thin cotton nightie and my partner draped appropriately. So I'm really curious to learn more about how histamine works and how all of this ties together. It may be a complete coincidence that I was suddenly warm enough, but if it isn't, I want to know what's going on there. Not to mention whether it's safe to double up on cetirizine like that!