Tuesday, September 25, 2012

POTS Testing - Day 1

I finally had my long-awaited POTS assessment at the National Neurological Hospital in Queen's Square, London. I had been put on the list two years ago, but deferred my original assessment appointment because I was so worried about having the Tilt Table test at the time - although in fact nothing was done other than a blood pressure and symptom history - back in February. I had deferred because my physio and I had been concerned about the testing making my symptoms worse. Then would have been the time for the tests! As a result I feel that my symptoms are much less severe two years later, so am not sure how much benefit will be gained from the tests - other than my ability to contribute to their research and for me to document the experience now.

I woke yesterday morning with the symptoms of a cold and had a sore throat and cough all the previous night, so was not feeling well. I reported this to the nurse who met me on the ward. It was strange being admitted to a ward where one is a day-patient. Nonetheless upon arrival my blood pressure was taken, and an MRSA swab as well as the usual clerical details -e.g. next of kin, allergies, wrist-band. I was then taken to the Autonomic Unit and entered a small laboratory where I spend the next four hours.

My 'scientist' was lovely and explained everything to me as it unfolded. He begun with taking some notes about my symptoms and when the occurred and anything that made them worse. I was then asked to lie on the table (to be come the tilt table) and was hooked up to a blood pressure machine around my right arm and some base-line readings were taken. Heart monitor pads were added to my chest and a heart monitor put around my middle left finger, which created a pulsing sensation (to the rhythm of my own heart). I had to have my hands warmed up as they were so cold - particularly to the left as is often the case. I was then left for a good ten minutes whilst several baseline readings of my Blood Pressure (BP) were taken whilst I was horizontal. Then came the first of the testings....

I was asked to squeeze something as hard as possible and hold it there for several minutes to create a tornique. It was quite painful, and I just about managed to do it. All the while BP/HR readings were taken.

Next I was asked to do some mental arithmetic. I found this quite stressful at the start of the test, but got into it OK and then it was made even harder. Doubtless my HR/BP readings will bear out this stress.

Aftter this I was asked to do some deep-breathing whilst readings were taken. This was fine. 

The next test involved having two icepacks put onto my right hand, one under it and one on top of it. This was most unpleasant, and again survived the experience.

Once I had recovered from this test I had to do a lot of shallow breathing - or hyperventilating. This did make me a bit dizzy/lightheaded.

After this I had to go to the bathroom before a few more baseline HR/BP readings were done, and then I was tilted abruptly (though not violently) to 60 degrees. I then had to spend a very long time in this position. I was taken well past the ten minutes - although I was having symptoms of HR and temperature change as well as feeling sick. I then had a cannula inserted and bloods were taken and my response to the stress measured. After I really could tolerate no more and was getting to stage of hypervenilation, I called it a day and requested the test to end (I think he wanted me to hang on a bit longer, but my back was killing me). I was then tipped back to horizontal, though this did not feel horizontal anymore - felt strange. Once a few more readings were done, whilst in horizontal, I was asked to stand still. A few minutes into the test Blood was taken from the back of my hand, rather than using a cannula, which I found strange, but it was another stressor designed to see how I would cope - which I did. After this came the exercise test!

The exercise test involved me lying supine on a bed where I was hooked up to another BP monitor and a few baseline readings were taken. I was then positioned into an exercise bike, whilst lying horizontal, which is hard to imagine, but was possible. I enjoyed this test the most of all. I had to cycle keeping the bike at a certain pace. The first level was easy, then pressure was increased to make the resistance harder and I had to cycle for a bit longer and then third level was harder still. I had no problems at all with this test and seemed to recover quickly.

The final part of the morning involved me being fitted with the portable BP/HR monitor and being given a diary to complete with various activities for the following 24 hours. I was told how to remove the monitor and what sorts of things to be doing in the different tests - e.g. some sitting, lying, walking, assessing myself before and after food. After this I was able to go to the ward and have my lunch before running off to work - and did a brisk walk there. It was very embarrassing having the machine on me at work as it was quite noisy and sounded like flatulance! Everyone was laughing. By this point in the afternoon, I was feeling increasingly poorly and was very definitely coming down with a cold.

I didn't get home from work until just after 8pm and did some more readings in different positions. Bed time was another issue altogether...!


Anonymous said...

Thanks for sharing your experience. I'm interested because I discussed a referral for a TTT with my GP, but didn't push for it, partly because I thought it would be very unpleasant! Plus, she didn't see much point, as I wouldn't want to take any new medication anyway, as I usually have nasty side effects.

Hope you're feeling better today.

Isobel said...

The TTT really isn't as bad as people say it is and if you get symptomatic when you are going through it they record everything going on!

Anonymous said...

That's good to know. Maybe if I get brave enough, I'll take it up with the GP again.