This week I received the results of the Tilt test that I had earlier on this month.
It’s not an easy test to get. I’ve been trying for one for a good few years but finally was referred for one after I got my Ehlers Danlos diagnosis. Exeter Hospital do around three Tilt tests per week for people that are suspected to be suffering from PoTS ( Postural Tachycardia syndrome).
PoTS is an abnormal response by the autonomic nervous system to becoming upright. There is an abnormally high increase in heart rate and altered blood supply to the brain on standing. It results in a large number of symptoms, the commonest of which are dizziness, fainting, tiredness and palpitations.
It appears that when I first fell ill nearly six years ago, many of my worst symptoms were actually due to PoTs, frequent problems with fluctuating body temperature, nausea and an almost complete inability to sit or stand upright. Although I have improved greatly over the past couple of years it is still a great relief not only to have been tested, but also to have a confirmed diagnosis.
So what does the test involve?
I was to have nothing to eat from midnight prior to my 9.30am appointment. I don’t usually eat past 7pm so I was pretty wobbly by the time we reached the hospital. We were met by a lovely Cardiac nurse who took us to a small side room where we met the consultant. I was helped onto a bed and then strapped in. There were straps across my chest and knees. My fingers and chest had monitors.
My fingers were ice cold, despite it being one of the hottest days so far this year. The nurse then dipped my hands into a cup of hot water, which made me, and then, Mexican wave style, the nurse, Doctor and my mum all jump!
Once the monitors were all connected and tested to be working, the table tilted upwards. Although I was in effect standing up, it was a very peculiar feeling. My blood pressure dropped from 199/54 laying down, to 74/31 tilted upright. I was tilted at 60degrees. My knees went to jelly and I felt quite dizzy, but soon stabilised. I was tilted upright for twenty minutes.
I was distracted by chatting to the Doctor finding out about how he came to be testing for PoTs and how he came to have an interest in CFS and Ehlers Danlos. Apparently, he had been involved with groups of patients with Chronic Fatigue syndrome and following him attending a lecture by Professor Rodney Graham, he realised that a lot of his patients shared the same symptoms as Dr Graham’s EDS patients.
You can stop the test at any time if you feel unwell. Despite not feeling brilliant I was determined to see the test through, and to be quite honest, I was at what turned out to be the end, of a ‘good run’ health wise, so I was impressed with myself for even managing to attend the appointment! Dr Jeffreys had me raise my right arm for a time during the test. That was quite difficult when I could literally feel the blood running out of my fingers and down my arm! The bed was then returned to a flat position although for a long time I felt that my feet were raised!
Throughout the test both nurse and Doctor were interested and sympathetic when asking about the symptoms I suffered. As always it is such a comfort to have someone understand your ailments and not treat you as if you are imagining it all. We talked about my diet and it seems that my increased fluid and salt intake are certainly helping with the PoTS, so I can carry on eating the pork scratchings I get from our local farmers market!
The difference a diagnosis makes to treatment is huge to patients. CFS is treated by the NHS as a mental illness and so no physical tests are available despite the wide ranging symptoms. The problem is also that even private health insurance can only cover tests and treatment that are recommended by the NHS NICE guidelines so even if you are sure you are suffering from EDS or POTS, as long as you have a CFS or ME diagnosis you are denied both tests and treatments on the NHS or privately. No wonder the vast majority are forced to pursue complimentary therapies. Dr J was happy to test me again in the future should I want, and I offered to be a guinea pig for any trials or experiments he would be holding in the future.
I am continuing to be treated by a local herbalist ( Lucy at Myrobalan Clinic ) and so this test doesn’t affect any current treatments I am undergoing.
For more information about PoTs click here; http://www.potsuk.org/