One of the most worrying symptoms in ME (and some other chronic illnesses) is the feeling of dizziness, or being light-headed, and in extreme cases fainting, blacking out. It is sometimes accompanied or preceded by tachycardia (increased heart rate) and/or palpitations. It may not be the worst problem, especially when pain, muscle weakness, noise and light sensitivity, food intolerance, brain fog, etc., etc. are much more common, but it is very worrying when it happens. In my case, it’s one of the few symptoms that the medical profession has taken seriously (“oh, you seem to be managing OK” for everything else!), and has led to some of my best and worse experiences with doctors.
There are some slightly different ways of describing what happens, I think depending on the exact circumstances:
- dysautonomia (i.e. a general problem with the autonomic nervous system that regulates the heart;
- POTS (Postural Orthostatic Tachycardia Syndrom), which is just the formal way of saying your heart rate increases when you change position, e.g. go from sitting to standing;
- neurocardiac syncope, if there is an actual faint;
- the one I generally use is NMH (Neurally Mediated Hypotension), which means a lowering of blood pressure caused by faulty signals from the brain.
(Actually, what I usually say is just that I’ve had a dizzy spell.)
It’s not always clear what causes it. Stress is often a factor, of course, e.g. rushing from one thing to another; also sometimes a sudden change in temperature can have an effect, often in conjunction with water – so I now shower sitting down. But sometimes it can just happen for no apparent reason; or, like other ME symptoms, some time after a burst of activity.
The first time it happened for me, I was still working, and was at a conference. As I worked for the NHS in Wales, it was one of those conferences where if someone asks “is there a doctor in the house”, they either get tranpled in the rush or everyone looks round hoping someone else will respond. In the end, I had two people: a doctor specialising in psychiatry (who worked for the same organisation as me), and an ex-nurse who was working for one of our suppliers. They also contacted my GP, and arranged for an ambulance to take me to hospital.
(Note: I say this was the first time, but that’s not completely true – it was the first time since developing the symptoms of ME. I had passed out twice before, both after donating blood; these the only times I’d ever done this, and the second was about twenty years after the first when I thought I should be OK. These were both at workplace sessions, and as an iside, I’m not sure which is more embarrassing: passing out in front of your boss (as a young programmer) or in front of your staff (as a team leader)!)
The good thing that came from this event at the conference was that my GP started taking things seriously, and it spurred him on to find someone who could confirm a diagnosis of ME, which we had discussed a few months earlier.
I also had a series of appointments at the cardiology clinic, with mixed results. They were able to rule out any structural or organic problems with my heart, and they confirmed what was going on with a “tilt table” test, which I passed (!) (When I first heard what this was called, I imagined being strapped to a table and being tossed and shaken in all directions, like a dangerous fairground ride, so I was a bit disappointed when I found out what really happens. They strapped me to a table, all right, and attached sensors all over my body, and then let me lie horizontal for five minutes to get a baseline reading. They then tilted the table to almost vertical (70 degrees), and waited for me to pass out. I didn’t think this was anything like strssful enough to cause it, but within a couple of minutes I had gone – one of the fastest responses they’d seen!) It was this test that showed me the drop in blood pressure which caused me to pass out, which is why I generally refer to NMH.
One of the problems with the cardiology appointments, though, was that I saw someone different each time, and had to go through the history each time, and got different names for what was happening. Some of the consultants were sympathetic to ME, but some were not. After the tilt table test, I asked if this was caused by the ME, or if there was another reason; my (third? fourth?) consultant said categorically that it wasn’t, but that there was no other specific reason – it was just one of those things. I thought having two medically unexplained conditions was too much of a coincidence, so showed him the passage in Dr. Charles Shepherd’s book, “Living with M.E.”, which described the relationship between the two. At this point he left the room and came back with the head of the department, who accused me of irresponsibly looking things up on the internet and demanding a particular medication – both of which were untrue! I was glad that that was my last appointment (and they were probably glad to be rid of me).
I have to say that I have had some good support from NHS professionals, but also there has been some narrow thinking.
Meanwhile, I live with the possibility of fainting from time to time; hopefully when there’s a cure for ME it will stop this as well! I can dream …