Batik

If you want to test this, you should log how you feel at the end of the day before you look at the pressure for that day, in order to avoid the placebo effect (or whatever it's called for this sort of thing). And then put the results into a pretty graph, of course.

I pretty much do all of that except that I don't lie down flat for an hour beforehand, I keep going for longer than 10 min most times, and I have to walk about six feet to get to the corner where I stand. Someone here pointed out that a corner is great for keeping you up, so I stand with my back to the side of the built-in wardrobe and my right side against the bookcase, with the blood pressure monitor, stopwatch, paper and pencil on a shelf right by my hand. So the movement is about as minimal as it gets, once I've got there (with occasional slight detours to put my slippers on). If I stand up right by the bed, I don't have enough to lean on to keep properly still. I find it really, really awkward to organise lying flat for an hour beforehand, so I'm aware that this will be affecting my results. I find it hard to organise taking my BP when I've been lying flat for a while at any point, as the computer is usually off by then and the BP monitor is unlikely to be close enough to grab without really moving. As moblet commented in the PR thread, I'm aware that I flex various muscles (legs and/or buttocks) while standing up for a home TTT. I try not to fidget, but it can be hard, especially since I usually get really itchy a few minutes in. This is reminding me that I bought a heart rate monitor off eBay ages ago, possibly years, and last time I fished it out, it didn't work. Time to get out the mini screwdrivers, take off the back of the watch, and see what sort of battery it takes, I think. This might be an easier way of tracking this sort of thing. ETA: Drat. I can't get the back of the watch off.

I did manage to get 59 lying to 93 standing after breakfast, though it took 18 min to get up that high, but the question still stands as I'm curious now.

I've noticed that when I run poor man's TTTs at home, I often get lower readings afterwards than before I stand up. Possibly it's because when I'm about to do a home TTT, I'm bustling about slightly, even if I'm trying to lie down for at least a few min beforehand. Today, for instance, I did one this morning, and only lasted 12 min before the breathlessness and dizziness forced me to lie down again. (My HR and BP often take quite a while to show results, something I'm concerned may mess up testing in the future.) I've only been off the antihistamines a week, and I think they're still affecting my readings, which are far more stable than they used to be. So this morning, I took two readings before standing up, and my HR was 63 and 66. Standing up, my HR ranged from 74 to 91. I lay down again, and my HR started at 65 but went down to 56 over the next 20 min. 56 is low for me, but then I don't normally take my HR this early in the morning on an empty stomach, so perhaps it's normal for me under those conditions. Pulse pressure ranged from 28 to 57, including the latest readings. Anyway, this sort of pattern is quite normal for me - sometimes the difference doesn't hit 30bpm unless I count the readings afterwards too, or else it hits 30 from lying to standing, but goes above 40 if I count lying down afterwards as well. I am rather annoyed that my HR and BP are generally much more stable at the moment. Perhaps it's because having a few solid months on combi antisthistamines and such has helped, perhaps it's because I'm not as ill overall as I was a few months ago, but I have a 24 hour ECG (Holter monitor) in a week and it's going to be very awkward if it doesn't show anything up.

*perks up* There's something called familial dysautonomia which is found in Ashkenazi Jews? I'm ethnically Jewish, and I have EDS and autonomic problems running in my family. *googles* Ah, right, totally different condition, then. And yes, "You don't look Jewish," is indeed an inappropriate response. It wouldn't even be appropriate if you had just announced that you were Jewish, or raised the subject in another way.

I'm off my meds (mainly antihistamines) for a few weeks in preparation for a 24 hour ECG (Holter monitor), and my eyes are distinctly worse. I'm having more episodes of them suddenly stinging and swelling shut, just from the humidity in having a shower. It used to be that water in my eyes was bad enough, like getting soap in there, but now it seems that steam is too. Plus the eczema on my eyelids is back with a vengeance, which means steroid cream again.

My temperature isn't so bad right now, but when it was, my right hand was always colder too. I'm right-handed, and I assumed it was because my right hand got more exposed while my left hand was more likely to be somewhere warmer.

Eyes yes, skin a bit, mouth no, hair not that I've noticed, though I consider it normal to dab a bit of oil on my hair from time to time anyway. I use eye drops throughout the day, and make my own moisturiser. Some of my friends say they don't bother to use moisturiser, so I must have dry skin compared to them, because I really can't skip a day on moisturiser if I don't want my face to feel painfully dry. I make mine by melting together solid coconut oil, cocoa butter and kokum butter, then adding a couple of drops of essential oil and putting the jar in the freezer to solidify again, if anyone's curious. Very fussy skin here!

Just knowing that you have the med there can be quite helpful as well, you know. I get quite bad PMS, also known as PMDD. I can go from chirrupy to extremely anxious and depressed in about five minutes flat if my hormones are in the mood. After two years of being put on much heavier-duty meds, such as Cerazette, which just made everything worse, my GP gave me 2mg diazepam (Valium) to take as needed. I don't need it all that often, but it's really useful when I do need it, and it is also comforting to know that it's there in case of emergency. It's the lowest dose you can get for diazepam and I'm absolutely fine with it. Try it on an occasion when you know it won't matter if you get a bit sedated (so not when you need to drive!) and you feel safe. It's not a lifetime commitment to try out a med the once, don't worry. If you don't get on with it, then you don't take it again, it's that simple.

Mine varies too much to fit into this. Without meds, it seems that my typical HR is 50s-60s lying down flat, 60s-70s lying down propped up, 70s-80s sitting up, and when I stand up it goes up into the 90s and 100s. Now that I'm on oodles of antihistamines, it doesn't seem to go up when I stand up.

The hitting a nerve thing definitely sounds worth investigating. It could be referred pain. When I had my gallbladder out, I got referred pain in my left shoulder blade, which is normal for that surgery. Nerve pain is weird stuff. But then the whole thing sounds weird, so I think you're right to investigate all possibilities. I just have mild problems with morphine: it makes me throw up and it stops me from sleeping, which is similar to how I react to tramadol.

Nerve pain makes more sense to me than a reaction to the morphine, but I don't know enough about how pain works. Have you ever taken other opioids? Codeine or tramadol, for instance? How did you get on with them? Have you ever had other problems from having a needle inserted?

Arggh. Even doing no more than cutting the alimemazine in half and taking everything else, I slept really badly. Which could of course be partly due to expecting to sleep badly when off the antihistamines, but still. The week that I'm tapering off everything will be fairly rough: I think I will take valerian this week, and then don't take anything at all for the two weeks before the ECG. I hope that will work out.

Thanks, that's good to know. In that case I should start tapering down now.

Alimemazine is called Vallergan in the US, I think. So I should be OK if I am down to no cetirizine or alimemazine 24 hours beforehand, and no cimetidine two days beforehand? And presumably taper down to those, maybe going down to half a tablet and taking one med at a time? I think the alimemazine is the most sedating, so I should probably come off that last. Although when I collapsed at the dermatologist that time, the only thing I was on was cetirizine, and I had been feeling awful due to stopping that a few days earlier. Obviously I want my symptoms to show up well, but I don't want to be collapsing at the hospital. I'm due to be premenstrual around that time too, which means more chance of anxiety, generally feeling cruddy, and judging by this month (the cimetidine has done a number on me), the munchies!

The appointment is through, and it's for 4 and 5 December. I've managed to book transport from the Red Cross. After doing some more tests, I reckon I should come off the antihistamines beforehand, as I'm on quite a few by now (they added in cimetidine after the attack I mentioned in the last post), and my HR magically doesn't go anywhere much when I stand up now, at least not with tests I've run recently. (So now I should do another, just to be sure!) Last time I came off the antihistamines, I just stopped cold turkey and promptly stopped sleeping. So my questions are: a) How long do antihistamines stay in the system for? I need to work out when I should be completely clear of them for the test. How slowly should I come off them? I'm currently on 10mg cetirizine, 10mg alimemazine, and 400mg cimetidine. Plus vitamins and minerals type stuff, which shouldn't make me feel particularly bad when I come off them. My doctor hasn't a clue, nor has the cardiology department, so there's no point in asking them again.

I don't have problems shaving my armpits, by the way. It's just the legs that play up. Does anyone else get this?

Could you add "caffeine" to the last question, and "none of the above" as well as "other" generally?

I'm assuming it means "yer feet ain't sweating". I wonder if this ties into the problem with itchy legs, or having trouble shaving legs, that we are all discussing over in that other post?

Tell you what's odd. As well as having given up on shaving or epilating my legs years ago, I also find that my legs randomly get itchy in the evenings sometimes, leading to me having to take my trousers off (corduroy, nothing likely to cause irritation) and put on pyjamas.

Thank you for explaining, E Soskis. Do you have any idea what might be going on if a BP machine gives fairly consistent readings at some times, and wilder ones at others? I get dramatic fluctuations when I've just stood up, and sometimes after meals, but the rest of the time they're fairly well-behaved. My BP monitor is a brand and model that was recommended by the British Heart Association.

MSG or something like that? Higher levels of oil? I get the thing where a food will be fine for me at one meal and then I'll come over all itchy or sweaty the next time I eat it. Not a clue what's going on there. I am, however, starting to suspect that the reason why I tend to get annoyingly itchy in the evening is nothing to do with what I eat and more to do with when I take my meds, or perhaps the natural cycles that the body goes through over the course of the day (not that I have any idea what hormones or what have you are doing what in the early evening, mind you).

Is it close to any particular meal? Maybe there's something else going on at that time of day, perhaps related to medication? Although that wouldn't fit with getting reactions to a snack, would it. Specific dietary triggers, maybe?

5 min apart? So what about when we're all taking our BP every minute to do a home version of a tilt table test, is that completely useless then?

I do sometimes have issues after meals, notably breaking out in a sweat, and on some occasions getting violently itchy (lasting for days), abdominal pain before I'd finished eating, diarrhoea half an hour later and so forth. Yes, I suspect mast cell problems too, but I think I'm going to have to wait until I get to the POTS/ME specialist before I will be able to talk about it with anyone. It's ludicrous - I'm now on three different antihistamines, cemitidine which is something to do with histamine as well, and quercetin, of which only the last is non-prescription, and they still won't talk about mast cell stuff. Vague mutterings about allergies is the best I've had so far, and I really don't think it's allergies, I'm not reacting consistently enough.