I had an appointment today at the London Neurological Hospital (attached to UCLH) to assess me for Postural Orthostatic Hypotension Syndrome (POTS). My first blood pressure lying down was something horrific like 191/158. Upon standing this dropped to 132/90. My blood pressure was very high, but typically dropped on standing, as is the case with POTS patients. The outcome is I am being referred for 3 days of intensive testing which might require admission to the local patient hotel - although I suspect I can come home as I am not really that far away. They will look at everything including bladder/bowel and blood pooling and they are going to look at hand-sweating as my hands are often damp and clammy. It all sounds fairly radical and I suspect I am useful research data for them since there is not that much that can be done if one's Autonomic Nervous System (ANS) has a mind of it's own as is often the case in hypermobile patients. Anyway - will see what happens when I go for testing. It all sounds quite interesting - I get my own scientist for about 3 days! I think it will be worth going just so I can write about it for the sake of others, even if I don't benefit. Tomorrow I have a bladder appt - it is all go, go go!
On another note - did a ten minute continuous jog with no stops. Now need to push for 15. Have come along way since only managing 90 seconds!
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