Orthostatic intolerance

I am able to take warm showers in the morning and stand in line ups without moving, I was unable to do this for 22 years because it was too stressful and made me feel very unwell, I would have to rest/lie down right after. For the last few years it has not been an issue. I don't have to elevate my head when sleeping anymore either.

So whatever this autonomic issue was in past has improved on it's own (for now).

 

I suspect autonomic testing is useful for people with autonomic neuropathy, but that is a very different situation from the OI issues of ME.

I am not familiar with the use of the tilt table test but I thought it was largely to look for tachycardia in POTS. That of course would be quite different from the slow heart rate of normal fainting. It is also different from the immediate 'grey out' on standing that is the most common OI of tall people.

I am not convinced that a tilt table test tells someone with ME anything very useful so far.

 

It’s not a matter of being convinced. I don’t think Jonathan is in any way dismissing your experience. He’s just saying that there is more than one possible conclusion, and that without scientific trials we can only have correlation not definite conclusions. It sounded to me more like he is frustrated that we don’t have good trials that show what the patients are saying over and over.

It could be that the over exertion caused a crash and permanent worsening. That certainly fits with the pattern I and many others have experienced. But, given that we don’t know the mechanism behind ME and why there are relapses and remissions, it could also be that something else that you were unaware of was already set in motion to cause a decline and the over exertion was coincidental to the long term worsening.

Anecdotes are very useful to work out patterns and to provide warnings for ourselves and others of potential consequences, but they’re not the same as scientifically establishing cause and effect.

 

I prefer to work all day and hike and cook and sew and ...
Alas, I cannot. I choose to lie down to avoid payback, but I’d hardly call it a preference.

 

Hi sea - I understand that no one is dismissing my experience but equally I understand all the reasons why I can't expect my experience to lead others to draw the same conclusions as I did. We each are familiar with our own normal pattern, and with the details and context of any event that might change it.

I'm not complaining!

 

I tried hard to explicitly exclude ME patients in my original question. (i.e., "I'm not talking about testing for ME patients but just in general?")

I'm also not asking about when or how doctors should order autonomic tests (for ME patients or for any other patient) because I realize that is a complicated question.

I'm asking, what do you think of the tilt table test in general?

To give a specific example, if a patient faints on the tilt table test due to a sudden drop in blood pressure does this mean anything?

I'm trying hard to not use any diagnostic terms. My question is whether you think the tilt table test is a tool that can provide useful data vs. being useless (like certain blood tests from disreputable labs).

Thanks!

 

I really don't know. From what I had heard it is intended as a way to look for haemodynamic changes like increased heart rate. Not so much whether someone faints but what happens to their circulation if they do. I have to say I had never heard of it before joining ME forums!

 

Thanks for your answer.

I had the impression that the tilt table test was pretty mainstream test used by cardiologists (electrophysiologists?). Even NASA uses it. A lot of the info I've read about the tilt table test doesn't mention ME or CFS.

I don't understand all the medical issues underlying the tilt table test and I know there are differences in interpreting the data. But my own cardiologist found the data from my tilt table test useful. And I'm glad it was part of my medical record when I had to apply for long term disability.

 

I found the tables and figures in this paper helpful - they show what happens on tilt testing with various types of orthostatic intolerance (generally, not in ME): https://onlinelibrary.wiley.com/doi/pdf/10.1111/joim.12021

For what it's worth, my tilt test results would indicate delayed orthostatic hypotension according to the categories in that paper. My symptoms suggest I also have intermittent initial and classic orthostatic hypotension, but they resolve quickly and aren't a problem, and didn't show up the day of testing. Definitely no POTS.

I don't think we understand what's happening in terms of OI in ME (and possibly OI generally) at all yet. I am very symptomatic long before my BP drops, and increasingly as I stay upright for longer, with what are considered prodromal symptoms like nausea, brain fog, headache. The payback from allowing myself to get too symptomatic is grim - I need to limit how symptomatic I get so that PEM stays manageable-ish and I can remain as active as possible. I think this is just how it is with ME.

I think the problem is way upstream of BP or heart rate changes.

 

When first ill and not yet severe I couldn't understand why some days I felt fine next day after hour at local shops, others crashed. Much later realised that the triggers were when I met a friend and stood still chatting.
It was standing too long, then finally sitting upright too long at hairdresser,s before a wedding I was then too crashed to go to, that sent me in stages into severe ME, now only tolerating seconds upright eg across the room to the loo and back, without crashing.

But I have never felt dizzy or faint or fallen, just know that I need to get down, but when I inadvertently stood a few secs too long concentrating hard trying with torch to see fuse box in power cut, I didnt feel any signal, and next day wondered what had hit me and crashed fr six weeks.
Being severe already, life is very routine so I realised what had happened but much harder to know when life is varied.

 

could this be caused by osmotic dysfunction (changes / stress) ?

how could this be tested ?
(something like space/astronaut training ?)

 

Here's a whole journal devoted to the 25th anniversary of POTS. The article by Goodman is comprehensive. Raj has a study where he showed that the standing test was more specific than the TTT.

https://www.sciencedirect.com/journal/autonomic-neuroscience/vol/215/suppl/C

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/

 

Same here. I thought it was just fatigue causing me to be so foggy headed and so desperate to lie down. It was only after the NIH conference that I thought 'hang on, I think I might have that!'.

I asked my GP about it and lo and behold, I did. Now being treated with medication, my brain fog is much improved and I can sit upright for longer periods, and I feel less ill all the time.

It hasn't cured my ME by any means. I think it's just one part of the ME. i.e. I think the ME causes haemodynamic issues which cause orthostatic intolerance. Because my heart rate was all over the place - not regulating normally at all, and I had no idea it wasn't normal until I showed my GP the readings from my smart watch.

 

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.

 

Have you looked at the POTS UK site. It may be worth asking to be referred to a relevant cardiology specialist to see if there are alternative meds, or ones that can be taken in conjunction, that have more effect.

 

@Blueskytoo
I agree with the message above on having a look at that website. I have the same issue is you. Although I am not on anti-hypertensives yet, I am on Ivabradine which specifically reduces heart rate for hyper PoTS/IST which ironically helped with the blood pressure as well- I don't know how, perhaps just slowing down my heart rate has helped over time. It is worth speaking to a cardiologist perhaps about medication specifically for the PoTS if you have the condition.

 

I was unable to do a tilt table test as cannot put weight on my legs. I had just a holter , BP testing and an echo done. I think a holter monitor And BP testing with activity diary - which is what I did - could provide more clues than just the tilt table test.

ETA although I do think a tilt table test can be very useful too! But it can be very difficult to tolerate, and also provides a snapshot of just that particular time.

 

The odd thing for me is that standing or sitting upright for too long is more distressing than moving around. I had workers here this week that spent 2.5 hrs cleaning the air ducts. After one hour of sitting upright I was feeling chest pressure/discomfort and forehead pressure. I felt very unwell but couldn't lie down because the workers were still here. I had this happen to me at the bank years ago when I had to sit upright and concentrate for over 2 hrs. I started feeling very unwell/chest pressure/forehead pressure/fatigue, but once I got home I steam mopped the whole kitchen and felt better. This also happened when the workers finally finished a few days ago, I was able to clean up their mess, vacuum, mop and dust and . . . I was unstoppable

 

I think this can occur in pots, I don't know if that's part of what you have, but I have heard from others people with pots say that if they're sitting up right, they need to wiggle their legs around. Same with standing up right, they need to move the legs or much on the spot sometimes.