My tilt table test (I'm in the UK) was surprising. I've had ME since at least 2010, and have slowly got worse over the years, usually after some precipitating event like gallbladder surgery. But in early 2014 I had a sudden relapse into severe which I've never recovered from. Obviously at this point I was pretty much in bed 24/7, and spent most of my time either lying down or sort of semi - sitting up as sitting up in bed made me feel awful. I noticed that my heart would thump a lot and I just felt like I needed to lie flat. I didn't think much of it because that feeling of just needing to lie down has been with me right from the beginning of being ill with ME, it was just a lot worse.
I also noticed that standing up made me feel severely ill very much more quickly than before and that i would start to pour with sweat very fast and just feel awful if I didn't go and lie down almost straight away. Once I did lie down, my symptoms would start to improve and I would begin to feel "better". I read somewhere about POTS and checked out my heart rate over several days using a heart rate monitor from my running days. I found that my resting heart rate is low, at around 55bpm, but on bad days it would increase to around 130bpm within seconds of standing up (and even on good days it would go up to around 90bpm), but on lying down it would drop back to normal very rapidly, often within just a few breaths. I knew the raised HR was a symptom of POTS so I approached my GP and he sent me off to have the TTT.
In my hospital, the tilt table is actually part of the syncope and stroke clinic, so the consultant who carried it out was a stroke specialist. They wired me up with the heart rate monitor and a BP monitor and I'm sure there were other things as well but to be honest I was feeling pretty ill by this time merely by being out of bed and having to attend for the test so I don't really remember. They left me lying down on the bed for about 10 minutes after they'd connected me up, by which time I'd begun to feel a bit better and I could feel my HR was slowing down.
The consultant told me how the test would work and said it would probably take about 20 minutes. In fact, it lasted less than 5 - my heart rate was up to 130bpm before I was even upright, from a horizontal one of 55, but the really worrying thing was my BP. My family has a history of low-side-of-normal blood pressure and mine has always been fine, even during pregnancy. So at the beginning of the test it started off at 120/75, which at 49 is about normal, although mine is more usually about 115/70. But bearing in mind I'd been up for about 3 hours by this point it was probably about as good as I was likely to get.
However, as soon as they started to tilt me I started to feel unwell and then very unwell indeed. My breathing was laboured and I was sweating and had tears pouring down my face which I've never been able to explain - I wasn't crying, I wasn't upset, it was a purely physical distress reaction. My feet went blue and my knees were mottled and they had me either going upright or upright for a total of 4 minutes and then lowered me down. They gave me a drink of water, and I think they were quite shocked at the strength of the reaction I'd had although they tried not to show it. They unhitched me from all the monitors and covered me with a blanket and gave me 10 minutes lying flat to recover. Once I felt a bit better, the consultant told me that they stopped the test early because my blood pressure had shot up to 200/140 and they were worried I was going to have a stroke or a heart attack. I had no idea that my blood pressure was so high and would never have known without the tilt table test. I could have died from not knowing.
So although he didn't offer me any treatment for this, once I'd had the letter through after the test and had the results there in black and white, I asked my GP if we could try some medication for hypertension - as I explained to him, given how much of my time I spend in bed, if it made my BP drop too low the only time that would happen was when I was lying down anyway because that's the only time it was normal, and it would therefore be unlikely to cause me much of an issue. Whereas a blood pressure that high just from being upright long enough to go to the loo is actively dangerous. So he tried me on a hypertension medication and after some tweaking and monitoring we've got it about right.
My upright BP is a little higher than it should be but not by much, and at least I'm much less likely to keel over from a stroke or heart attack now. But I don't feel any better for the medication and it hasn't affected my HR rising or how awful I feel when I'm upright for too long. I can't stay up for any longer either so it hasn't effectively changed anything in how it makes me feel or how it affects my life, but at least now it's not likely to kill me. The main thing that really annoys me is I'm now classed as having high blood pressure even though, strictly speaking, I don't. It's entirely positional - lying down it's absolutely low-side-of-normal for my age. It's the standing or sitting up that does it.
So the moral of the story is, I suppose, is that if you're offered a TTT, take it. It could, potentially, save your life.
