Batik

They're doing it as the first stages of investigating what is up with my ANS. I don't have a diagnosis yet, or even a specialist (this is being ordered by my GP). I'm not on any medication for my ANS, although I suspect that the antihistamines are making a difference there (which is why I'm off them today as a test). I doubt that a 2 week monitor would be an option, to be honest. The one I'm getting is the sort which records your heart rate constantly, rather than the sort where you push a button. At least, as far as I know - isn't that how all 24 hour ECGs work?

Thanks! The transport thing isn't really that big a deal, though I could have done without the morning of making phone calls. My last dose of meds was yesterday morning, since I decided to give it a whirl. I slept really badly last night, which is the same as what happened the last time I was off the antihistamines. I did a home TTT this morning, and my HR jumped up much faster than it usually does. It was 68 when sitting just before the test (I almost never manage a true lying-to-standing test), and went up to 105 at 4 min, along with a relatively high BP of 142/116. For the next 8 min, my HR varied between 92 - 100, and my BP was fairly normal. Now that I'm sitting down again, it's 98/63, 72. As ever, I got itchy a few min after starting the test (and I'm still itchy now), eventually sweaty, nauseous (still nauseous now), hyperventilating near the end which is what made me stop. Most of that is the same as usual, but it generally takes longer for my HR to go up, often well over 10 min, and the nausea isn't all that common. So it looks as if this is indeed a useful way to do it. I'll try to do another home TTT later, and keep this up for a few days if possible. Slightly later note: it's taking me longer to recover from this home TTT than normal, too. I'm still itchy and nauseous, my HR is taking longer to come down, even with lying down, and my BP and PP are still swinging about wildly. Plan for this afternoon: miso soup for lunch, as it always brings me out in a massive sweat, and monitor my BP/HR around it this time. Probably go easy on salt and fluids today.

The hallmark of ME/CFS is that it is made worse by exercise. So if you are feeling awful after using the cardio equipment, then lay off that for the time being. Until you get a diagnosis, err on the side of caution.

It looks like I'll be using the Red Cross transport service, which is relatively cheap and will include someone to push the wheelchair and take me into the appointment. The hospital said they give you 3-4 weeks' notice for the appointment, which is enough time to book that. They also said that they're currently booked up into December, and they haven't received my doctor's referral yet, so it won't be as close as I thought it would. I'm tempted to try a few days off my meds just to see if it does anything interesting to my HR, and then decide based on that. I'd hate to have the test wrecked by my antihistamines making my heart look better-behaved than it really is.

It may be worth bearing in mind that the term "functional medicine" as it is used here means something completely different to how conventional medicine uses the term "functional", where it means, "nothing has shown up on testing," at best, and, "we think it's psychosomatic," at worst. In case anyone was getting confused!

I'm trying to remember where I read that you should come off your meds. I think it was the study group for pulse pressure in POTs on FaceBook, and people were talking about coming off the meds weeks in advance. Surely they want to see what my heart is on its own, not when the effects are being masked by meds? How to exacerbate the problem so that it shows up properly was going to be my next question! Merely going out of the flat on two consecutive days will do a fairly good job of that already. I was planning to try standing up a lot, and probably miso soup, since that always brings out one **** of a response (well, pouring with sweat certainly, never actually checked what my HR is doing). I already knew about taking a shower, thanks. How big is the little bag? I always wear maternity sleep bras, as it's too painful for me to wear ordinary bras, and I'm quite happy to sleep in that. (I spend most of the day in bed already.) I already wear an emergency alarm pendant which is roughly 2" x 1.25" x 0.5", and I wear that tucked into my bra. Failing that, there's the strappy cotton camisole option. I am now trying to ring the hospital to see if they know. There's something up with their switchboard, they keep trying to put me through to Clinical Audit. And then I ended up spending the next hour trying to ring various people about organising transport, which is proving to be a total nightmare. I now have about five different people due to ring me back, which guarantees that they will all ring at once while I am in the shower. I have a nasty feeling that I will be arguing for taxi transport or similar on the grounds that I can't sit around waiting for the ambulance patient transport service for hours, I'll pass out from sitting up (this happened, badly, last time I used the patient transport service), and they'll say, "Prove it with a letter from your consultant," and of course I have neither a consultant nor a diagnosis yet...

My GP, who is still looking into referring me to a POTS specialist, wants me to do a 24 hour ECG/Holter monitor in the meantime. She's probably made the referral for the latter by now, and said it's relatively quick, which probably means weeks, perhaps a month or two. With that sort of timescale, it also probably means that I may not get more than a week or so's notice, though I'll need at least a week in order to book someone to go with me. I assume that I should be off any meds which might interfere with the results. Here's what I am currently on: Daily Adcal D3 - calcium and Vitamin D supplement. I doubt it will make much difference if I go off that. Alverine citrate - for IBS. No idea if that interferes or not. My intestines are relatively well-behaved these days, I'm not too worried about going off that either. Vitamin B complex - not prescribed, and not a problem to come off. I'm not sure that it does anything for me anyway. Cetirizine 10mg and alimemazine 10mg - these are the main ones. I'm theoretically on antihistamines for dermographism, not that they make a blind bit of difference to it, but I strongly suspect a mast cell disorder. The most notable effects are that I sleep better on them, and that my pelvic pain (which is mostly just around my period anyway) pretty much vanishes. I think they may be helping my ANS too, though it's hard to tell. Occasional use 2mg diazepam - for anxiety or muscle pain 30/500 co-codamol - for pain 20mg temazepam - for the odd really bad sleepless night various things for nausea or IBS as needed Obviously I will ask my GP about this, but I anticipate a very vague answer. Does anyone have any idea which ones I should go off, and how far in advance to do so?

I didn't actually try googling HR software, I'd just been googling BP software, and I'm fairly sure that I'd checked all the options for that. You know what it's like when googling free software sometimes: half of the hits lead to something which no longer exists, and the other half are only free for a trial period! Pulse pressure seems to be a key sign for me as, it's not just HR. And it's also a warning sign when my BP is generally low, something I'm only now realising is strongly related to the meds I take for pain. I ended up with a BP of 75/40 the other day after taking co-codamol with diazepam for pain (the first time I took that combo, I fainted the next day). Granted, I was lying slightly on my side, and I've now realised that doing that makes my BP look a bit lower (which I hadn't spotted before using this software), but I don't think it would have been more than 5 points below the real reading, and 80/45 is still very low. I can't spot medication trends using the Soundtells software, and I can't really see home TTTs or similar with it either. Pen and paper isn't an option - I can't use it with anything like the level of sophistication which shows up helpful results, and I can't actually hold a pen for more than a few words anyway due to hand pain and muscle weakness. Plus I'd struggle to read it due to visual problems. So far, this is the only software I've found which actually gives me useful, readable results.

Thanks, that's worth knowing. You've guessed rightly that I don't have a smartphone. I did try setting up a spreadsheet, but found it didn't work out well - I just couldn't get the level of sophistication. The first software I mentioned, the Soundtells one, isn't good enough to show things like how I fare on different meds. The second one is. Sounds like it's worth forking out for, then, although I'm still sulking at the price and the snags.

I'm one of those people who adores playing with graphs. I do a lot in spreadsheets, but sometimes it's not the best way to get things done. In Feb I downloaded the freeware Blood Pressure Tracker from Soundtells. It does a very basic job and it's not exactly a thing of beauty. A few days ago, I went hunting around and found My Blood Pressure. It is very nifty indeed. As with the other one, you need to change its normal/prehypertension/hypertension settings so that they reflect low/normal/high BP instead, but that's easily enough done. It shows lots of different graphs, and the categories function is fantastic for putting in things like position, whether it was part of a poor man's TTT, whether you'd just eaten, that sort of thing. Here are some examples. These ones are filtered just to show my home TTTs for the last week: There are a couple of things I don't like, however. One is that it loves using the standard deviation, which means that if you look at anything involving averages and ranges, it's only using 68% of the data. This is fairly hopeless for someone with POTS, since the whole point is that you need to see the full range and the outliers are vital. The other problem is that it's very difficult to focus closely on anything other than the most recent readings, which is annoying if you want to look back at previous home TTTs or similar. I've been emailing the guy who makes the software, and he explained how to do it, but it's still very awkward and takes quite a long time. And of course, the third thing I don't like is the price! It's free for 15 days, then it's $29.95. It's very nifty software, but I am very broke too. Much as I've had enormous fun playing with it, I'm wondering whether it's actually going to be useful long-term, or whether I should just take screenshots of the useful readings and leave it at that. I'm still at the stage of trying to get diagnosed, I'm due for a 24 hour ECG (Holter monitor) soon and my GP is trying to refer me to a POTS specialist. So I haven't even started things like treatment yet, although I think the antihistamines may be helping at the moment. Is this sort of sophisticated tracking worth keeping up long term?

Absolutely, but not all doctors think that way. If you google functional neurology, there are plenty of papers on subjects such as How to lie to your patients, or Which terms are least likely to make the patient think you don't believe them ("likely to offend" was the term used, I believe). It's a direct descendant of the very nasty medieval concept of "hysteria", involving such terms as "conversion disorder" and "somatoform disorders" along the way. I've read a website by a functional neurologist where he classifies ME/CFS as "not due to a detectable underlying medical or neurological condition" (interesting news, considering that it has been classified as a neuro-immune disorder by all the authorities, including the WHO, for decades now), and boasts of how many of his patients told him that once he had reassured them that he did believe them, their symptoms magically vanished.

Pickled ginger is very easy to make and tastes much yummier when home-made, incidentally.

Has anyone found their hormones changing on antihistamines? The most obvious change for me has been that my cyclical pelvic pain has stopped since I started combining cetirizine and alimemazine, but now that I'm on the 10mg dose of alimemazine (we were splitting tablets before), I'm noticing that my basal temps are a bit high, and I'm on CD26 with no sign of ovulation yet (bit late for me). I did a bit of googling, and apparently antihistamines can sometimes cause amenorrhoea, as well as occasionally being reported to inhibit ovulation. My gynae was actually trying to stop my periods anyway, I had ten days on Noriday (a progestogen-only pill/mini-pill) in late July. You can see some of my charts here.

If you're not sure what counts as a well-balanced diet in terms of ratio of protein/carbs/fat, http://www.mayoclinic.com/health/healthy-diet/NU00200 is a well-respected guideline which does at least give you some idea of what is counted as "normal" in this respect. Which is all debatable, of course, but it gives us a baseline to work with. I'd consider my diet to be normal, while someone who believes in a low-carb/high-fat diet would think that I'm on a high-carb diet.

It seems that there are some very dodgy neurologists out there! I nearly got referred to a functional neurologist, looked up what they do, and promptly requested that the referral be cancelled. Functional neurology is the name given to what used to be called "hysteria", i.e. a derogatory way of saying, "we can't figure out what this is, so it must all be in the patient's mind". It can be worth googling "functional neurology" so that you know what to avoid. If you're being referred to a neurologist who specialises in ANS disorders, that sounds a lot better.

It's worth noting that anything provided as a form of contraception, such as the mini-pill, Mirena or Depo Provera, isn't actually progesterone. It's progestogen (progestin in the US). This is an artificial hormone, vaguely similar to progesterone, but actually more similar to the hormone androgen. For some reason it's incredibly common to say "progesterone" when people mean "progestogen", to the point where I've seen it on medical sites. Don't assume that progestogen-only medication will cure oestrogen dominance. It's not that simple, especially since it's progestogen rather than progesterone. Progesterone is almost never used by the medical community these days. I can't remember why, it was quite popular in the seventies, but I think it didn't really do that much, or perhaps it's just one of those medical oddities. The "natural" progesterone cream you can buy online is very low-dose, and there have been studies on a few brands which showed that they didn't contain any progesterone at all. Some doctors will prescribe progesterone pessaries/suppositories, which do have clinically useful levels of progesterone, so it can be worth asking about those, though I don't think they're useful for more than a small minority of women. I think the best thing is to learn as much as you can about this, have a good talk with your gynaecologist, and make sure they monitor you carefully with whatever medication they put you on. It's really hard to predict how people will react to hormonal treatments, so it usually boils down to trial and error.

I get something along those lines too at times, it's unpleasant. I've not sure if it worked or it if was coincidence/placebo, but a couple of times I looked up manual lymphatic drainage massage for the ears and followed a video on YouTube, and my head felt better within, hmm, a few hours I think (the problem has been known to go on for a week). If you try it, do report back about how it worked for you!

Oh, is that why I keep getting told I have a fever when I collapse? I should take my temperature more often and see if there's a pattern. I suspect there are a good few rounds of antibiotics I never needed to be on.

I've been diagnosed with ME and we're pursuing a diagnosis for POTS. At the moment I'm under exceptional strain, due to a recent break-up and having to deal with social services and welfare benefits, and am having a PTSD flare-up too. I'm not eating as well as I should be due to insufficient care in the home, and my evening meals are particularly patchy. I'm falling asleep well, though, which I think is due to being on combination antihistamines. I keep waking up an hour or so earlier than I'd like, and I wake up breathless, heart racing, jittery, and/or anxious. This wasn't a normal pattern for me before the sky fell in six weeks ago. Does anyone know why this may be going on? I took 2mg diazepam when I woke up after six hours' sleep this morning, managed to get back to sleep, but for both wakings I was tachy and my chest felt tight, and an hour later my chest is still tight. Not particularly anxious today. At first I assumed it was anxiety causing the other symptoms, but now I'm wonderinf if I could have cause and effect the wrong way around. And anyway, why should I be getting anxiety specifically upon waking? Hypoglycaemia due to not eating enough the night before? Cortisol or what have you? I'm not under any treatment for the suspected POTS, so right now there's nothing I can do about it.

Could you change the poll to include the options "I didn't use any medication"? I've never bothered with prescription meds for fevers or colds.

It's a common myth that progesterone is used in contraception. Actually, it's progestogen (UK), known as progestin in the US. This is vaguely similar to progesterone, but not all that much - it's actually closer to androgen. I've never had enough good tests to know exactly what is going on with my hormones, but I do Fertility Awareness Method charting to keep an eye on my periods, and I know from that that I have a short luteal phase, which suggests oestrogen dominance.

I use it on my skin and hair. The Alzheimers thing was only one patient and a bit of theory, wasn't it? At the dose they suggest, it's a relatively high cost and high number of calories, neither of which have really been possible for me. Interesting, though.

Martiz - why under your tongue?

No idea, but there are many different types and causes of tinnitus. Mine is pulsatile tinnitus, which I love as a name because I think it sounds so dodgy! It just means that I get a rushing noise in time with my heartbeat. It's vascular, apparently, and was triggered off by flu. The white noise therapy mostly put it to bed, though it tends to flare up when I have a cold. I do occasionally get another type of tinnitus, a single high-pitched tone, but not enough for it to be seriously problematic, and mostly just when I'm really exhausted. When I got the in-ear white noise generators, 7 years ago, they were given to me by a hearing therapist. I don't think they're easy to buy on your own, and I got the impression they were very expensive. But I reckon you could do the same job with an MP3 player anyway. You start with the white noise on a low setting, just ten minutes a day, as far as I remember, and gradually build up the volume and the time. I think you also start by doing the ears separately and then eventually together? Worth playing with, at any rate. There are tinnitus forums around, I'm sure people must talk about this there.

That's actually quite unusual - most doctors will refuse to prescribe the combined pill to a woman with migraines. I asked quite persistently, and was told No, because of the stroke risk. So they wanted to put me on progestogen-only contraception, which I hate.