Atypical 24 Hour Ecg Causing Referral Problems

[Batik]

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.

[bustersacc11]

I understand your frustration. Your trying to collect data that correlates with how you feel along with numbers to support it. Have you suggested an event monitor. Different than holter. You would have to hit a button during times you are symptomatic. You would wear it anywhere from 3 to 6 weeks. You can collect a lot of data that way. Or push for another holter. There are holters that you can wear for 48-72 hours.

Also, you mentioned that you passed out. What would be important to me in your case is what did my rate and rhythm look like just before, at the time, and during recovery when I passed out. Important to separate whether its cardiac or neuro causing your passing out. Is your rate and rhythm changing that is causing you to pass out or is it your low blood pressure dropping further down. You capture that it is an issue for you.

I hate it when things malfunction for me at home and everywhere else but when I go to the dr or have a test done it won't replicate itself. Good luck. Keep us posted.

[Batik]

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.

[Batik]

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

[lejones1]

I'm so sorry, this sounds awful. I don't really know how your healthcare system works over though, but it sounds like you don't have as many options and maybe less leeway in pushing for certain tests. I know how frustrating it can be to work with doctors here, and I can't imagine how much worse it much be to follow crazy referral rules.

I would actually be hesitant to send those charts unless it's a last resort, just because the data isn't very clear cut. For the first few charts, where you taking those measurements under specific conditions or what? It's easy for doctors to attribute variations to time of day, sudden position changes, anxiety, etc. And in your TTT charts HR increase is right around 30 and not much above 100. I don't mean to say this to question your self-diagnosis at all - it sounds like you definitely have something going on - but I know doctors can be stubborn and if you give them borderline info it'll be easier for them to blow-off.

Maybe you've already thought of this, but would your GP be open to doing a poor man's TTT in her office? It sounds like what you really need is a TTT, but I guess without getting to a cardiologist that's not an option. A cardiologist may be more open to getting data from another doctor rather than self-reported from a patient, and maybe you could even go off meds for a few days beforehand to amplify the results.

Good luck, I hope you're able to find a way to get them to listen to you!

[Batik]

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.

[Batik]

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.

[bustersacc11]

You are doing the best you can. If taking it immediately is all you can do because you feel worse than at least it is something. Do you take your blood pressure when taking hr measurements. I will share with you the few times I went to vandy I would get a sheet from them asking for me to capture my vitals. Simple orthostatic challenge test. They wanted me to write my blood pressure and hr down after lying for 10 minutes, then at 1 min of standing, 3 minutes, and then 10 minutes.

[Batik]

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.

[Batik]

By the way, isn't the 30bpm rise meant to be from lying to standing? The 90 to 116 rise that showed up on the test was from sitting to standing.

I'm composing the email to the specialist. Apart from briefly outlining what my numbers tend to be, and mentioning the symptoms I get after eating or standing up, what sort of things are relevant to stress? I've got so many symptoms going on every day that I don't know where to begin!