Thursday, 12 July 2012

Autonomic/POTS Testing at NHNN

From the 20th-22nd June 2012 I went to the National Hospital for Neurology and Neurosurgery in London for testing to find out why I have been experiencing the sympoms that I have. The tests are designed to trigger the symptoms so that they can measure what was going on, so I was bound to feel dreadful after them which I did.   The testing was specifically for POTS (Postural Orthostatic Tachycardia Syndrome) and this is my experience of the testing.  

Day 1

Wednesday mum and I got the megabus to London and then the bus to Holborn. For some reason TFL told us to get off at Tottenham Court Road to get to NHNN. Stupid TFL, luckily a man on the bus told us a better way so the journey went pretty well, and we got to the appointment on time. The staff at the day care center were really nice, I quite liked Paulo one of the nurses who made sure that everything went smoothly.

The first afternoon of testing I had to have the exercise test, this was cycling whilst lying down. The scientist increased the difficulty after every 3mins. I managed to do the whole 9mins but the last few minutes my knees were quite sore. They took a lot of readings getting me to lay, stand and sit for 5mins at a time.

After the main tests I was hooked up to a 24hr BP and had to write how I felt each time a reading was taken, this was every 20mins sometimes less if there was an error. The band for the BP got very tight and left bruising on my arm. I was glad that it was only once an hour during the night otherwise I wouldn't have got much sleep. I woke a few times but not long enough to disturb my sleep a great deal.

Day 2

The next morning I went back to the day care center and there was some slight confusion about what I was supposed to be doing as they hadn't been informed that I had tests at 2pm that afternoon. The tests I had that afternoon were rather horrible. First they tested me lying down, after that they took readings while I did breathing exercises (long deep breaths then fast shallow ones). I had a cuff on my right arm, one on my finger on left hand and things on my chest. My finger went a rather deep shade of blue. They put my hand between some icepacks, my hand and half my fingers went blue, the fingertips went bright white, it ached in my bones.

Next came the dreaded tilt table test. The blood pooled in my feet pretty quickly and extended quite far up my leg. I felt rather sick quickly but I managed to last the whole ten minutes before I nearly fainted. My feet had turned a deep shade of blue and by that point so had my hands. Towards the end I came very close to fainting, luckily they stopped it when they saw my BP go down. It took a good ten minutes to recover with my feet above my head. They were supposed to do testing with my blood but they couldn't get the cannula in my vein, I did warn them that I have difficulty getting blood out.

Day 3

The third day started with a meal challenge which is complain with extra glucose that I had to drink. It was sickly sweet and made me quite nauseous. I had to lay there for about 45 minutes while my stomach digested it. They took measurements during this. I had a lot of wires on me and the blood pressure cuff, the good thing about having a bendy neck is that I could see the screens behind me. Obviously I'm not trained to read them but I found watching them quite calming. After the meal test we then had to do the testing that couldn't be done the day before because they couldn't get blood out. I had to hold on to hot water bottles and this helped a little with getting the cannula in my arm. They then tilted me up and left me there for 10 minutes. They took a sample of blood afterward, I can't remember what they were testing for.

After that I was done for the day and could go home early. Luckily the hospital had arranged transport so we didn't have to get the bus back to Victoria. Only problem with finishing early was that we had a long time to wait around because our bus wasn't until 7:30. I finally got home around midnight.

All in all the stay went well and I hope that they figure out what is going on with me. Now I just wait for the results and go to my follow up appointment in October. I will put up another post once I find out what is going on.  


  1. Sounds horrific! Also sounds like you have what I have, simply put: thick blood. There's a proper term for it but it's long and I'm useless at remembering what it is.

  2. Thanks for sharing your experiences! I actually have been reading some articles on autonomic testing because my little brother is going to go through one before the year is done. I have been trying to tell him that it can only help him when it is all said and done.

    1. No problem. They feel dreadful at the time and are designed to trigger symptoms so they can measure them, but definitely worth it! I hope it goes well for your little brother and they find out what's going on so they can help him.