What is Autonomic Testing?

Read about my personal experience of Autonomic Testing at the NHNN to find out more.


As it is #DysautonomiaAwarenessMonth I thought it would be appropriate to republish this post I wrote a while ago about my experience of Autonomic Testing.

Prior to this visit I had been showing signs of Autonomic Dysfunction with the strong possibility of having PoTS, I was referred by my G.P under direction of Prof Rodney Grahame, who after carrying out some simple tests wanted me to be seen by a Neurologist.
I saw a Neurologist at the NHNN and she decided that I needed to have a number of tests over 2 days, this meant being put up in a hotel nearby as I didn't require a need to be on a ward.

Day 1 of Testing

Due to the early start, we arrived at the hotel the night before as it would have been too much for me. The Ambulance picked my Mum & I up from the front of the hotel and took us to the hospital. We had to go to the day centre and were asked to complete the necessary forms, I started getting very anxious when I was looking round at other patients having their blood pressure taken as I had to go without my beta blocker this morning. 
I was taken to be weighed first then my heart started racing and I just wanted to leave, luckily my Mum was with me and persuaded me to stay, I think otherwise I would have left. My mum explained to the nurse how anxious I was, my BP and heart rate were very high and the nurse was concerned and said I could take my medication but it will affect the results, I was put in a really difficult position, when the nurse explained all that was happening today was I will be fitted with a BP monitor, I decided to not take my tablet. My anxiety gradually lessened, the nurse was really nice and took me for a tour around the department to take my mind off things. She retook my pulse which had improved a bit, she was less concerned.
I had to go into a different area to get the monitor fitted, I was told that I had to wear the monitor continuously for 24 hours, the guy explained clearly what I had to do and then I was free to leave the hospital.
Every 20 minutes the machine would beep and I knew then the cuff would start tightening, the part I dreaded! Every hour I had to carry out some very basic exercises like lying down for a few mins, walking to get my heart rate up and record the time on the machine and any symptoms, after a while I got used to the routine and knew what to expect, the tightening of the cuff didn't get any easier though! it really hurt my arm.
I knew I would not get much sleep tonight even though it only goes off hourly through the night, they told me at the hospital if I am symptomatic anytime I can do some manual recordings, I did this several times. I tried not to worry too much about what will happen in the morning when I have the dreaded tilt table testing. This is the main test to diagnose PoTS.

Day 2

Last night I did not sleep well due to the cuff tightening on my arm every hour, it would wake me up even though I tried to ignore it and go back to sleep. I was counting the hours down to when the machine can come off as I had coped really well but was starting to get fed up with it and it was hurting my arm. I was not allowed to eat or drink anything other than water 4 hours before the test.

The ambulance came to pick us up and take us to the hospital, just as I was getting in the ambulance I heard this beep and my blood pressure was taken, which was painful as my arm was out straight and could not do anything about it.

When we arrived at the hospital, we were told to wait in the lounge, there were other patients with EDS waiting so we got chatting, which made the time go quicker. I met one girl who was having her second tilt test, she told me there was nothing to worry about and that it is more boring than anything else.
I had to wait for a porter to take me to another building for the tilt table, he was very friendly! All the staff in the department were very nice. I had to sit in a narrow corridoor for what seemed like ages to be called through for the testing. I was chatting to some patients while I was waiting, then they called my name. The technician asked me lots of questions about my health and explained what would happen. The assistant asked me to get onto the bed and they made me as comfy as possible, they had to warm my hands up as they were so cold, even though I had been wearing gloves. My feet were freezing as well so they wrapped them with a blanket. They fitted me with a blood pressure monitor, which I was very used to by now! and a heart monitor. My BP was taken while I was lying still. I was asked to perform some breathing exercises and other short activities which were not difficult but you needed to work hard at some of them, my BP was taken again while I was carrying out the activities. Before I was tilted, blood was taken and then again near the end of the tilt. The sensation when they tilted me was really strange, you felt like you were going to fall off the bed even though you couldn't as you were strapped.
My chest felt funny straight away and my feet and legs changed colour, my heart was beating quite fast and making me a bit short of breath. I could only manage 10 mins of being upright but that was enough for them to get the results they needed.

I was free to go back to the day centre and wait to see a doctor before I was allowed to go home, he examined me and said I was tachycardic, which wasn't surprising considering what I had been through. I just wanted to go home.

I will let you know about my results in another post.