Newcastle-upon-Tyne has a leading ME/CFS Research centre (see their Facebook page) based in the Biomedical Research Building at the site of the former Newcastle General Hospital, now the Campus for Aging & Vitality. The Research is headed by Professor Newton, who specializes in fatigue (see their fatigue research website here) and the autonomic nervous system in particular Postural Orthostatic Tachycardia Syndrome (known as POTS).
During my early years of M.E., when I was severely affected, I had huge problems with Orthostatic Intolerance, ie. an ability to sit or stand upright without feeling dizzy, ill or fainting. Thankfully as my M.E. has improved, and in particular the past 2 years as I’ve been able to start walking again, my ability to remain upright without wanting to pass out has improved substantially, at least in the early part of the day although I tend to go downhill mid-afternoon.
However, I’ve developed new problems with my heart beating irregularly particularly after eating and when changing from sitting to lying down, and due to my age, my long years of inactivity, and the fact that Ehlers-Danlos can cause heart issues this needed to be investigated. I feel like my heart skips a beat, then I get a strong pounding beat, which causes the veins in my head to throb! It’s quite unpleasant, even though I’m sure it’s nothing much to worry about.
Since contracting meningitis in 1996 I’ve also had constant, painful, pins & needles in my hands and the soles of my feet which I suspect may be peripheral neuropathy. The sensation doesn’t come and go, but does have days where it’s more intense than others. No-one has ever explained what this is and any doctors I’ve mentioned it to have just looked blankly at me and moved swiftly on!
So my appointment at the POTS clinic today was to address my heart rhythm abnormality, my pins & needles, and to assess whether I still have POTS or OI.
I had a short ECG done, which measures electrical activity in the heart. This was normal (it always is!), but being as though my heart is usually worse after eating and in the evening when I’m relaxing Professor Newton decided that 24 hour (or longer) heart monitoring was needed. She thinks I’m suffering from Ectopic heartbeats, which are usually benign and nothing to worry about, but we still need to know for sure. She is referring me to my local hospital to have this done, so I’ll just have to wait for an appointment.
My pulse and blood pressure were measured both lying down for 5 minutes, then standing for 5 minutes. All was fine and there was no substantial drop in blood pressure or rise in heart rate which would indicate POTS. I didn’t expect anything to show up because I’m always at my best in a morning (my appointment was at 10am), but get progressively worse as the day wears on (it’s now 3pm and I’m in bed because being upright makes me feel rubbish). The 24 hour heart monitor also measures blood pressure, so I’m hoping that a more accurate picture of any orthostatic issues will show up on that. As it was, because my 10 minute test was fine Professor Newton didn’t think there was any need for a tilt table test (the gold standard test used to diagnose POTS).
We discussed my pins & needles and Professor Newton had no idea what the cause was. So she’s referred me for an Electromyogram and nerve conduction test which measures the electrical activity of muscles. I’ve heard that this test can be excruciatingly painful, so the thought of having one doesn’t do much for me! However, I need to know what’s happening with my nervous system so I’ll just have to grit my teeth and get on with it. Luckily this again can be done at my local hospital.
At the end of the appointment I was asked if I had any questions. I told her about my chronic low blood pressure, and the fact my diastolic pressure becomes ridiculously low during menstruation which makes me feel absolutely crap. She said that because I had a very ‘clean’ vegetarian diet and don’t eat processed food I wasn’t getting enough salt and I needed to increase that, but didn’t tell me how or by how much. I was also told to drink 2 litres of water a day, which just made me laugh – the combination of permanent piddling due to my MCAD and the stretchy bladder of my EDS would make drinking that much water impossible without being permanently glued to my loo! I just nodded politely and thought “dream on ” to myself, even though I know the advice was correct.
I’m not entirely sure what I thought today’s appointment would be like, but it was nothing like I’d imagined. She’d read the notes sent by my GP and Consultant, but asked me nothing about my illness history or really anything about my symptoms, which I found quite odd. And I did think it would take more than a 10 minute blood pressure reading to determine if I had some kind of dysautonomia! But she’s the expert, so you have to trust her judgement. The appointment must have lasted a massive 8 minutes from start to finish and I felt rushed, which made me feel flustered. I thought at least I might get to talk to her about my EDS and MCAD, and how I feel these tie in to my M.E., but there was zero opportunity or time. Worth travelling 180 miles for? Time will tell. At least all the staff, including Professor Newton, were really nice (well, apart from the receptionist who looked like her face would crack if she smiled) which trust me when I say is unusual because over the years I’ve met more stony faced, miserable, disinterested and arrogant medical staff than you can shake a stick at 😉
I’ll keep you posted on the tests as and when I hear anything.