A while ago I was seen by a consultant who suspected that I had Neurally Mediated Hypotension from my symptoms, but she said a tilt test was needed to confirm the diagnosis. An appointment came through and my mum and I headed off for me to have it done yesterday.
I got called through by my consultant and she explained that I would be wired up to monitoring equipment and we would see how things went- I would be stood up for 20minutes and then if I felt able to be stood longer I would be given a spray of GTN (to dilate blood vessels) and then stood for a further 15-20minutes. She asked whether I thought I'd manage the full 40minutes and whether I was happy to go ahead with the test- I said that I would see how things went, I couldn't predict how I would cope with it, but that I was happy to give it a try.
They pulled the curtains round and I lay on the tilt table, which just looked like a bed with a platform at the bottom. My feet were against the platform ready to be stood up. I was wired up to an ECG machine (just 4 leads) and blood pressure monitoring equipment by a lovely nurse. I was then strapped to the bed and a table was put across to rest my arm on once standing.
The nurse said to let her know if anything was digging in or if I was getting pain both because they wanted me to be as comfortable as possible and because pain would decrease the likelihood of the test working because it would cause my blood pressure to increase. She also said that I should let her know if I was experiencing any symptoms and that we wouldn't be able to chat once I was upright because me talking could affect the readings and it could also distract her and she needed to be watching the screen.
They then started monitoring with me lying down. There was some difficulty getting readings on one of the pieces of equipment (because I have poor circulation and cold hands) to start with, but once they were getting reliable readings on the monitor, they stood me up.
It's a peculiar sensation, because you're sort-of standing but you're supported by the bed and the straps. You're almost, but not completely, upright. I felt some symptoms to start with, my heart was pounding and I felt quite light-headed, nauseous and hot-and-cold-prickly, but then things eased off and waxed and waned. The nurse checked with me that the straps and everything were ok. Once stood up I found it quite difficult to speak and could feel increasing pressure (presumably blood pooling) in my feet and legs. The nurse watched the screen intently throughout and made occasional notes and my consultant popped her head in a few times to check everything was going ok.
20 minutes arrived and the nurse said that she'd give me a spray of GTN under my tongue. She explained that it might feel uncomfortable in the base of my mouth, might make my heart race and there was a 1 in 20 chance of it causing a headache. She explained that it's only in the blood system for about 10 minutes, so it wouldn't have long-lasting effects. I agreed to go ahead and she said it didn't taste very nice and she was right. It's a very strong taste that sort of takes your breath away.. I can't really describe it, but it's not nice.
The nurse said not to be disheartened if we didn't get a positive result this time and that it's difficult to try to get the blood pressure to drop when it's not what it wants to do. But then she asked me a knowing 'are you starting to get an increase in symptoms now?'. I had been feeling pretty rough but wondered why she asked.... And then I knew. She had said previously that she'd probably see my blood pressure dropping before I felt myself going- she was right. Soon all I could manage was a few grunts in agreement that I wasn't feeling well, I'm fairly sure an alarm of some sort went off (though it could have been a tinnitus-type noise), and then I was out.
Passing out is a fairly indescribable feeling, but very familiar to me. The heat and cold washes over me, I feel ridiculously nauseous and acutely unwell and then I normally lose my sight and/or my ability to speak before losing consciousness.
The next thing I knew, I was coming round from a dream that I cannot recall, but remember was strange, to find about 4 people (including my consultant and the nurse) stood over me. I remember someone saying "Jessica, you're in the hospital", a feeling of confused panic, followed by some vague recollection of what was happening. I remember my consultant saying to wiggle my feet around to help me come round quicker, and someone else advising me to move my legs like I was on a bicycle; I remember just trying to work out where my legs were- I twitched around a bit (completely uncontrolled) and they seemed satisfied. I remember someone saying they would put a cold cloth on my head, and then being taken by surprise because I hadn't processed the words yet. I remember feeling totally disorientated and confused. I was offered a drink of water and caught the straw in my mouth but it took me a few seconds to work out how to suck and then a few more to work out how to swallow lying down. I was asked whether I had someone with me and their name, and just about managed to force out some one-syllable answers, but it was hard. I was still just trying to come round.
My mum was brought in to sit with me and I was still wide-eyed and fairly unresponsive, but was getting there. I had some more water which I managed better. I noticed for the first time that I was no longer strapped to the bed, the table for my arms was gone and my legs were raised on a big cushion- all changes made while I was totally out-of-it.
The nurse and my mum chatted briefly while I came round a bit more, and apparently I had looked like a rabbit in the headlights. I have a habit of fainting with my eyes open, it's apparently a bit freaky, but I don't have much choice in the matter.
The consultant came in and said that my blood pressure dropped dramatically which caused me to lose consciousness (and we were shown the traces). She said she was confident that I have Neurally Mediated Hypotension and resultant Vasovagal Syncope (fainting). She said that I'm getting blood pooling in my legs when I'm upright which is causing too little blood to get to my brain, heart and muscles which results in light-headedness and fainting, but is also probably a contributory factor to my fatigue, nausea and other symptoms.
I've been advised to squash the blood out of my muscles before standing up (eg. By crossing my legs), drink 2.5 litres of non-caffeinated fluid per day, increase salt intake, wear compression tights and do tilt training (stand 15cm away from a wall and lean against it until symptoms arise twice every day- the amount of time should increase with time).
None of this is going to exactly be easy, but if it helps to improve my symptoms then it will be totally worth it. There is no cure for Neurally Mediated Hypotension but there is symptomatic treatment. If the above methods don't work, I can be given medications, but they don't fix the underlying problem, they increase the blood pressure so that it drops from a greater level and therefore hopefully doesn't then drop low enough to cause symptoms.
After discussing with the consultant (which basically involved gentle grunts from me in what seemed like the right places- I was still pretty out-of-it), I was disconnected from all the monitoring equipment and started working towards sitting up, managed to get onto my scooter and left once I felt safe to sit up and scoot home.
I got something sugary to eat and a big drink in the hospital cafe and recovered quite well. I was extra-tired and needed to be flat a lot of the rest of the day but didn't feel too bad.
NMH is a form of dysautonomia, which means I've got a problem with my autonomic nervous system which controls everything that happens in the body automatically. The signals between my brain and my heart aren't working correctly.
It hasn't come as a huge surprise but you get so used to things coming back 'normal' with CFS, and you get so used to things being not only incurable but also untreatable, that I almost didn't dare believe someone would find an often-treatable problem that they think could be a significant contributory factor to my condition. I don't think I can come round to the idea that any new diagnosis is exactly 'good' but it sort of is this time because it's something major but potentially treatable, and treatable is most definitely good!!
PS I have had other appointments that I haven't updated about yet, but I will do. They went fine and there were no other new diagnoses, just advice. My main consultant did say he was happy for me to return to Uni for a few hours per week in September though which is exciting. Will explain more soon.