I’m writing this partly to gain some perspective, for my own benefit, and also to share ideas with others whose lives, like mine, are blighted by perpetual and extreme nausea.
During the course of this year, the nausea that’s plagued me since I developed ME in the mid eighties has come to dominate my life to the extent that, some days – like today, which I’ve mostly spent sleeping – normal functioning is utterly beyond me.
My normal remedies – pretty much anything containing ginger, or a large, and strong, glass of Vimto – no longer work, and I know from long experience that the drugs normally prescribed for nausea don’t work either.
Nor is the cause alcohol-related – I quit drinking well over a year ago.
There are several potential causes for my nausea, once I’d eliminated possible environmental causes. Most likely contender is the toxicity of the 16 drugs I’m taking, closely followed by insomnia. The one I really don’t want to think about – the terrifying elephant in the room – is that worsening nausea could be, and, I fear, probably is, a symptom of worsening heart failure.
There’s not a lot to be done about the drugs, so they can be left alone for now. Insomnia, though, is worth a look.
I’ve noticed, of late, that I’m not sleeping as well as I was (don’t get to sleep until around 02.00, and I wake at roughly hourly intervals until my meds alarm at 06.00), and that nausea in the days following a disturbed night is much worse than normal, so I began a search for a relationship between insomnia and nausea.
There is a lot of anecdotal “evidence,” much of it of little or no value – the fact that someone believes their nausea is caused by insomnia is not evidence, it’s just an opinion. They might well be right, but I have no way of knowing. What I wanted was a hard, medical, correlation, and that’s remarkably hard to come by.
This website cites nausea as a common symptom of insomnia. As medical evidence, it leaves a lot to be desired (it mentions nausea once then completely ignores it, despite the fact that, for sufferers, it can be utterly devastating). It is, though, pretty much par for the course if one ignores its over-sensationalised style, in that it makes the connection but fails to explore it.
Still, it’s probably worth changing my habits.
As regular readers will know, I’m house-bound and unable to indulge in any form of exercise. It’s only very recently that I haven’t been totally wiped out by excruciating pain. I’m never really tired, but despite that I tend to fall asleep unpredictably, especially at night, which means I’m even less tired by the time bed-time rolls around, so less likely to go to bed or, if I do, odds are I’ll read for a while. Then, when I do sleep, I’m awake every hour or so, as I said.
I reckon, then, that insomnia is well in the running as the cause of my nausea.
The drugs almost certainly contribute to it, too, even if they’re not the actual cause. At 06.00 I take a cocktail of 11 drugs, and I have no doubt that they are, to some degree, toxic, and as I get older my system becomes less able to deal with it, and that adds to the nausea, too. They definitely aggravate my insomnia.
Among the drugs is a diuretic, Furosemide (Lasix in the US). That needs to be rescheduled as, most days it kicks in after half an hour, and effectively puts an end to any further sleep, ramping up the insomnia problem. The trouble is, if I take it at 06.00 I’m peeing every 15-20 minutes until just after midday. If I postpone taking it until I get up, around 08.00, I’ll be peeing well into the afternoon, and I can assure you that peeing with such frequency is exhausting – the constant trekking back and forth to the toilet has to stop.
I could use a pee bottle, but I’m allergic to whatever form of plastic they’re made of, with dire consequences that are likely to require surgery to put right – my foreskin became inflamed and has shrunk so that it no longer retracts. And yes, it is as unpleasant and painful as it sounds** – would have screwed up my sex life too, if the events of this year hadn’t trashed it first. The only remedy seems to be circumcision which, at my age, has zero appeal. It’s barbaric at any age.
**The first time it happened was when I was in hospital in April. Got to see a urologist – who had absolutely nothing to offer. Eventually I recovered. Happened again recently, using my own bottle. Clearly not going to recover this time.
But I digress – yet again.
And so we come to the one thing I don’t want to peer too closely at, as it scares the shit out of me – my heart. I have COPD, which causes heart failure; I have calcification and stenosis of the aortic valve, which, as well as being potentially terminal in its own right, causes heart failure. And I do have heart failure, but no-one can be sure exactly what’s causing it. It doesn’t matter much – one of these will kill me, it’s just a matter of when. But, while I’m waiting, and wondering when my next angina attack will be, and whether it will be just angina, or the big one, heart failure causes nausea.
So, as you can see, any of the foregoing could be causing my nausea – hell, they could all be contributing – which might be what makes it so hard to treat now. And let’s not lose sight – as, in fact, I have – of the original cause, my ME, which is.
If I had to pick one, though, I’d pick heart failure. Why? Because the nausea is getting worse, and so is my heart. QED.
I need a cardiology referral, but that’s problematic. The first guy I saw, after I declined a couple of dangerous diagnostic procedures (safe alternatives were available), and pointed out that it was impossible for me to keep one 09.30 appointment, never mind two on consecutive days, as I was – and remain – far too ill, refused to even talk to me. The second guy prescribed a drug dose (Nebivolol, a beta-blocker**), that was far too high for my heart failure, which he ignored. It took me ages to get to a dose that I could tolerate, before increasing to one which was beneficial. I need to increase the dose again (I can safely double my current dose), but I know full well my GP will fuck it up if I try.
**Initially the insistence was on one daily dose. This made me profoundly ill, and my heart unstable and erratic, and I found that taking half the dose every 12 hours gave me the benefits without the problems. I had a hell of a job convincing my GP about this, and every time I went into hospital the argument started again.
Now, though, the PIL actually approves of taking it in two doses, so I clearly wasn’t the only one having problems.