Batik

To get to appropriate specialists and get a diagnosis! Treatment would be nice too. In terms of general health, the usual hope that I will stabilise and even improve. I've generally ben deteriorating for 16 years.

Not at the moment, it's too difficult to get the upper arm cuff on when I'm freezing cold and wearing lots of layers.

OK, some stats on HR rises in the morning. These are just immediate ones, I've not been well enough to keep standing so I don't know what number it would have settled at. Today - 63 lying, 103 standing. 21 Feb - 63 lying, 96 standing. 17 Feb - 55 lying, 95 standing. 11 Feb - 63 lying, 101 standing. Is that more helpful? Do immediate rises count, or do they have to be sustained? Since I've been on these meds, sometimes my HR climbs that high again after a few min, sometimes it doesn't. I might stick an audio book on and have another go at staying standing for a while straight from lying, see what happens.

Drat. That's what I was worried about. Bear in mind that in August I was too ill to do much faffing around with taking measurements, and that's when they put me on multiple antihistamines. The more antihistamines and H2 blockers they've put me on, the less exciting results pop up. I'm still having problems with collapsing, and I still have severe ME which makes me housebound and largely bedbound and am really ill, but my heart rate is jumping around less. I've got some isolated readings from August of 104, 110, 114, that sort of thing, all within 5 min of standing, and at the time my heart rate for sitting or lying propped up was 70s and 60s. So something typical would be sitting 60s/70s - standing 90s/100s - lying down afterwards 60s and 50s. Mostly I did those home TTTs from sitting to standing, it was the best I could manage, and I don't do these tests when I'm most symptomatic because I can't physically manage it. I didn't start checking my true resting HR until I got the pulse oximeter, because short of lying in bed with the blood pressure cuff permanently attached, the moving about involved for getting it out and putting it on means that I'm not coming from a resting position any more. Once I got the oximeter (a few weeks ago), I could see that my resting HR is mainly 60s at the moment, sometimes 50s, occasionally 70s if I'm stressed, but I've been too ill to stand up for long enough to do much lately. I just tried and lasted a couple of minutes before my feet were too painful to stand on. I've tried lying to standing first thing in the morning a few times lately, and the jump has been 50s to 90s. I couldn't stay standing long enough to see what it did after that. Also I can't stand unless I'm propped in a corner, and I can't stay dead still to save my life, I'd be on the floor in seconds if it weren't for swaying and fidgeting and so forth. And if I'm doing a home TTT, I need to keep pressing the BP button and jotting down the results, and even if I set it up as nicely as I can, that means some movement. Not to mention the short walk from my bed to the corner of the bookcase in between lying/sitting and standing, no idea what that does to the results. Poor man's TTT with the GP - it'd have to be at home, I'm not well enough to go to her office. I'd be too concerned about her failing to pick anything up. For example, here's what happened the last time I was taken to A&E after collapsing. No one took my vitals until I'd been there an hour and fallen on the floor twice. Then they took them once. Stress tends to send my BP up a bit, so it usually comes back as relatively normal if I'm in a hospital (apart from, you know, the times when it's been something like 82/40 and they've frowned at it and assumed that was wrong). After I'd been there about four hours, they took my vitals while I was lying propped up, then immediately after standing, and as there wasn't a massive drop between the two readings, said that I wasn't experiencing orthostatic hypotension now and was safe to go home. The previous time I collapsed, my HR was in the 100s just lying in the ambulance, but they forgot to mention this to the hospital so no one looked at my HR.

Yes. I have calcific tendinitis in both shoulders, which can be horrendously painful, and also have problems with RSI (repetitive strain injury) in my hands and forearms, which I'm told is a form of tendinitis.

OK, here's the set of images I made a while ago. I've put together some sample figures for BP, HR and PP with a view to showing them to the cardiologist when I finally get there, although now it looks more like I'll be emailing them to JN. Does this look like a good selection? I don't want to put too many figures in, they'll think I'm a nutter who's permanently attached to her BP monitor, but I do want to give them a decent idea of the range. Most of this has been while on various meds which dampen down the symptoms, and on a bad day I am unlikely to be faffing around with the BP cuff, so it shows the medium days. Apparently I'm not allowed to post the images directly, so please follow the links. 1. BP and HR Aug to Dec 2012 2. Percentages Feb 2012 to Jan 2013 3. Pulse pressure and heart rate Aug to Dec 2012 4. Home TTT chart 8.10.12 5. Home TTT chart 16.10.12 6. Home TTT figures 8.10.12 7. Home TTT figures 16.10.12

They weren't testing my blood pressure, and as for requesting another ECG or an event monitor, right now I can't even get them to accept that this one was atypical for me. I'm not the one in charge of what sort of testing I get, I can't just ask for a 72 hour ECG. I don't think I actually lost consciousness the time, or at least not for more than a few seconds. I remember my vision going black and realising that I had to get down immediately, and just about managing to stay ahead of it enough that I got down to the floor partly under my own steam instead of simply toppling over (which has also happened in the past). Apart from the 90 and 116 figures, and being told that my HR went down to the 50s at night, I have no idea what else showed up. From home tests that I've done, a couple of which I'll post later (support worker is here right now), I know that my blood pressure goes all over the place when I stand up, including a fairly narrow pulse pressure (e.g. 12). It doesn't simply drop, it's a lot more complicated than that. In the past, when I've been taken to A&E after collapsing, they don't even test my vitals for an hour or so, and the most sophisticated BP test I've had is to allow me to lie down for about four hours, then take my BP once while I'm sitting up and once after standing and declare that both are in the normal range, so I must be fine and can go home now (because who needs a silly thing like a diagnosis). My BP tends to take a while to show up problems, you don't necessarily see something from just taking one reading after standing up. As for my HR, it tends to jump 30-50 immediately after standing (too fast for a BP cuff to catch - I didn't realise this until I got a pulse oximeter), then drop a bit, then gradually rise over the next ten min or so, sometimes within 2 or 3 min, sometimes not till 15 min. So I reckon a TTT would have a decent chance of showing this up. I tried to stay standing up for a while during the 24 hour ECG, but this didn't go well due to ending up on the floor after a couple of minutes.

Grr. I've been trying to get referred to a POTS and ME/CFS specialist in England for six months now, and apparently I have to be referred via a local cardiologist first (referral rules in Scotland, where I am). My GP is doing her best, bless her. They did a 24 hour ECG (Holter monitor) three months ago, and I felt pretty odd that day (including fainting) but that's normal for me if I've had to make the effort of a hospital trip. They didn't actually tell me the results until today, at which point they've already been presented to the local cardiologists and dismissed as "not POTS". Apparently my resting HR was 90, so that when it went up to 116 just after I stood up and just before I fainted, that was only a 26 rise and doesn't count. I tried to explain to my GP that this is way off for me, that my normal resting HR is 60s, 70s on a bad day, sometimes 50s, but she said that probably won't help. I even pointed out that my HR's been taken a good few times by various doctors and it's never that high, but she said that won't help. Apparently the England specialist wrote back to say that the ECG didn't suggest POTS either, or at least not definitively. No one has discussed symptoms at all. What on earth do I do? I'm thinking of emailing this specialist (I've done so before), explaining that a resting HR of 90 is not remotely normal for me, and enclosing the images for some home TTTs I've done, showing that my HR regularly goes up 30-40 beats from sitting to standing, and even more from lying down. My pulse pressure is all over the place too, anything from 12 to 90 that I've recorded. Please note that I'm in the UK, so we're talking NHS rules here, not American insurance-based systems. I'll try to attach the images later, right now it's being difficult about them. They are all from when I've been on months of antihistamines which have dampened down the symptoms considerably, another reason why I was hoping she could look into mast cell stuff.

I'd want to see the original study. The media are notorious for poor science reporting, sometimes to the point that they will report the opposite of what a study actually found. Possible issues with this one: 1) If the study on humans was for a fast-food diet, not two controlled groups where the only difference was salt intake. (Which surely shouldn't be that difficult to do by now?) 2) If they're extrapolating from mice to humans instead of actually showing effects on humans. 3) If the mice were given a very heavy dose of salt, way beyond the equivalent for humans. I believe it's common to use overdoses in animal tests in order to see what the worst case scenario might be. 4) Salt may function differently in healthy/average humans to humans with dysautonomia. Really, what we'd want to see would be research on humans with dysautonomia, a reasonably healthy diet (rather than, say, the Standard American Diet), no medication used at all, the only difference between them being salt intake, and then keep that going for, ooh, a few decades.

Laundry balls are a scam, I'm afraid. Reading up on it is quite entertaining, mind you. Just Google "laundry balls scam". The variety of pseudoscientific explanations manufacturers come up with is quite something. Britishangel6, have you tried different stain removers? I've got sensitivities to detergents etc. too, and I'm getting on well with the Ecozone stain remover. If you're in the UK, that is.

Some people with ME/CFS do better on whole grains, including myself, and others find they have to stick to the white versions of pasta, rice etc.

None of those ever made a noticeable difference to me. I try them again occasionally out of optimism. I seemed to have quite an unpleasant reaction to d-ribose the other evening.

48 hours? Yikes. How much did he take? Thankfully I respond well to the lowest dose, 2mg, and I've used it on an occasional basis for years. It can be over-sedating if I take it with cocodamol, but I can't tolerate the latter at the moment anyway. I'm careful with it, both in terms of not using it too often and in terms of being careful about over-sedation.

Maybe you're eating less than you think you are? Have you tried keeping a food diary for a few days and totting it up in a calorie calculator? There's lots of apps, software and websites that make it quite easy. Then at least you can tell the doctor "I'm eating about 2500 calories a day but losing weight" (or whatever, your calorie needs depend on your weight and activity levels) and it gives them more to go on. I'm sorry for your loss.

Yep, I'm going for valerian blend capsules. I have a reasonably good valerian tea, but my bladder would not be impressed if I drank it late in the evening. This morning I woke early, anxious too (bloody hormones), and there was that lovely noise again, so I took some valerian, waited a bit, then a low dose of Valium, and eventually got back to sleep. I fell asleep really early last night, odd reaction to trying d-ribose I think, and must have slept at least 14 hours in total. Tried earplugs the other day, found they hurt my ears (never used to) and didn't reduce the sound anyway. I'm getting mixed results with the masking sound, sometimes it too makes me edgy. Maybe I'll try one of the other sounds, ocean or something. Valerian and caffeine - what quantities are we talking about, and how close together? I sometimes have a cup of hot chocolate, no later than mid-evening. Blue - ye gods, how awful. If you've been left with hyperacusis, have you tried white noise therapy? I got that from a hearing therapist years ago when I was having trouble with hyperacusis and tinnitus. She prescribed little in-ear white noise generators and a specific course of treatment. It worked nicely.

If you have ME/CFS, there's an online chatroom at the Phoenix Rising site you might like. What's your current living situation? Do you have carers coming in from social services, or the equivalent in your country? If not, can you apply for them? Are you newly single? I had a rough time when my ex-partner left as I was particularly ill at the time, and I have severe ME/CFS.

Do you have the option to try pain meds first? Can you tolerate them?

You know how sometimes we discuss whether we actually need the sugar common in rehydration drinks? What about using d-ribose? It's a popular supplement in the ME/CFS community, and it's a form of sugar. Don't put it in a water bottle, though - I did that and ended up with the most revolting black mould! I'm trying the odd glass of water with a couple of scoops of it, though, as I still have half a tub sitting around.

I'm very fond of an electric heated throw I have. It's the sort you can wrap around yourself rather than the sort which goes under a sheet, and I think it gets warmer than those ones. Sometimes it helps to leave certain parts of my body out so that I don't get dizzy etc., and to stay well hydrated.

Valerian diffused? Ye gods, that stuff reeks! I've known people grumble about the smell of just the capsules! Handy herb, though. Darkness therapy works the best for me. It gets the body to produce its own melatonin. Look at http://insearchofmornings.wordpress.com/ for more details. I used to have quite severe sleep disorders before this. Does your daughter use a computer, TV or smartphone in the evenings? That's enough to disrupt sleep considerably, due to the amount of blue light the screens produce (blue is the wavelength that suppresses melatonin production).

I seem to recall that the amount of electrolytes in commercial electrolyte drinks, sports DRI ks, coconut water and the like is pretty low. It's worth checking how much sodium etc. you're getting and thinking about how it compares to the amount you reckon you need. Does anyone else find that exactly the same drink will taste particularly salty one day, and not salty at all another? What's that about?

I have calcific tendinitis in both shoulders, and cortisone injections have been recommended at times. I asked around the ME/CFS community and decided against it. Are you on sufficient pain meds, and how are you getting on with them?

No Lyrica here, but I had a nightmare time of it on gabapentin, particularly the withdrawal.

Gah. Currently going through a crash (probably caused by less than a week of a modest exercise programme), sleeping more than usual, and getting vivid nightmares most nights. They do seem to be connected.

I gained weight after many years of ME/CFS - not sure when the POTS kicked in. I managed to lose it the other year. The forum at 3fatchicks.com is pretty good if you want to lose weight. I lost 25% of my body weight and have been maintaining that loss for a year now.