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.
