PoTS: Autonomic Tests at National Hospital for Neurology and Neurosurgery
Last week I travelled down to London to spend three days having tests at the National Hospital for Neurology and Neurosurgery. I'd been a few months prior to see a new consultant who suggested I go through the autonomic tests so she would have a better idea on how to treat me. I was diagnosed with PoTS (Postural Orthostatic Tachycardia Syndrome) almost ten years ago, and had been seeing a consultant in Salford before I moved to Northants. However, my PoTS has been taking over my life lately and I knew I needed to be seen by someone nearby - hence NHNN.
Since I didn't live close enough to travel to the hospital each day and I didn't need to stay overnight on a ward, I was put up in a hotel room for two nights.
Ian and I got a 9 am train to London St Pancras for my 11:30 appointment at NHNN. I was informed to check in at the Day Care Unit where I did the usual hospital admin, filled in forms, got a snazzy hospital bracelet etc. From there I was taken over to the Autonomic Department and had a 24 hour blood pressure monitor fitted to my left arm. The blood pressure monitor would go off every 20 minutes during the day, and from 11 pm - 8 am every hour. During the day it beeped before inflation and I was to record the time and what I was doing once the cuff on my arm had deflated, obviously I didn't have to do that during the night. As well as the automatic logging, I had to complete a variety of activities and manually take my blood pressure - I say 'activities' but it was mainly lying down for five minutes, standing up for five minutes, walking for a few minutes (or as much as I could), and performing an activity that brought on my PoTS symptoms. Within twenty minutes my arm was covered in broken blood vessels. I was allowed to take the cuff off for half an hour to shower, and was able to tighten/loosen it if I felt like it was hurting my arm too much.
I didn't get much sleep that night but I'm used to rubbish sleep anyway. The cuff didn't particularly bother me during the night and I must have fallen asleep because when I woke up the cuff was twisted and practically on my elbow - oops.
I was awake at 6:30 and had to eat breakfast before 8 am as I wasn't allowed to eat anything four hours before my tests. I went back to the Day Care Unit for 11 am and was very thankful when the porter took me back to the Autonomic Department to have the blood pressure monitor removed. I was left with more broken blood vessels and a lot of bruising. But hey, I've dealt with a lot worse.
I was ushered into a room with a bed and a lot of equipment I've never seen before. I made myself comfortable on the bed, had another blood pressure monitor attached (this time to my right arm), a mini-cuff on the middle finger of my left hand and several electrodes attached to my body. My blood pressure was taken every few minutes to establish a baseline and once the technician was happy that my levels were steady, the first part of the test began. I did various breathing tests; short shallow breaths for sixty seconds; deep breaths and holding; blowing and emptying my lungs - all whilst having my vitals monitored. I felt dizzy, lightheaded and felt like my head was going to explode during some of them. One test I had to squeeze a ball that was attached to numbered dial and keep pressure at a certain level whilst my blood pressure was taken - that was difficult. I also had a maths quiz to see how my body responded to pressure. And the worst one, an ice pack was taken from the freezer and applied to both sides of my hand and forearm to see how my body responded to cold. I felt like my arm was burning, it was so painful, and I most definitely didn't last the ninety seconds I
was meant to.
Next came the tilt table test. The dreaded part. But before that - a cannula. I'm fine with needles but I can't stand cannulas, they knock me all kinds of sick. I've had really bad experiences and my veins are pretty shy so I wasn't looking forward to it at all. The technician tried finding a vein, he stuck a needle in me, attempted a cannula, but my body wasn't having it. He said he wasn't going to keep trying as it wasn't completely necessary and I was more than happy with that.
Next I was strapped onto the bed and tilted at a sixty degree angle. I immediately felt sick, was overheating and dizzy but had to stay tilted for a minimum of ten minutes. I ended up tilted for about thirty minutes but was in agony, had awful palpitations, felt nauseous, lightheaded and my whole body was shaking and sweating. It was the worst half hour I've experienced in a while and I was glad to be lying flat. It was so weird when I finally was horizontal, I felt like I was upside down and that made me feel even more sick. Luckily, that was the only test for the day and I headed back to the hotel afterwards for so much needed chill-time.
I woke up really early nauseated with a terrible migraine. I couldn't stand up, I was so ill and really wanted to go home. I took some of my migraine meds and went back to sleep as my appointment wasn't until 3 pm, however we needed to be out of the hotel by midday. Again, I couldn't eat four hours before my test but I needed sleep more than food. We walked (I rolled) to the hospital and got there just before 1 pm. I didn't mind the wait as I felt like death and the chairs in the waiting room were really comfortable. My favourite nurse from Monday was on (Al) and rang down to the Autonomic Department and got my tested bumped from 3 to 2. However, when we got there they were running late and I didn't end up being seen until 2:30.
I was taken into the same room as the day before and the technician explained what would be happening during today's test. I'd be having two ten minute tilts either side of a liquid meal. Exciting!!! I hope you can sense the sarcasm.
I made myself comfortable on the bed (or as comfortable as I could), and was hooked up to everything I was the day before. Once I was stable, again I was tilted at sixty degrees for ten minutes. The palpitations came on immediately and I was burning up. Then I was laid flat again and given two cups of what-tasted like vanilla milkshake through a straw. I felt like a baby, lying there being fed. What I actually had was a vanilla Complan with full-fat milk and extra glucose. I'm a fan of sugar and this was extra sweet so I didn't mind it. Then I had to lie flat for forty-five minutes whilst I digested my delicious liquid meal. The lights were turned down and I closed my eyes for the majority of it but it certainly dragged. Once the forty-five minutes were up, I was tilted again for ten minutes. This was to see if food played a role in how PoTS affects me. This time I felt really sick and my body trembled.
Once that test was over I was free to go. My train wasn't until 8 pm and that was an absolute disaster but you can read all about that here. I'm going back in November to see my consultant, so shall update more then.
If you have any questions re PoTS, Dysautomnia or tilt table testing, tweet me or drop me an email.