Friday, 6 February 2015

POTs at University College Hospital

It has taken the whole of January to recover from my trip to Copenhagen.  This week I have finally felt strong enough to get back to the "normal" yoga class I was doing, which I have really missed. This week I did the flipping the dog move for the first time too, which made me feel great, like I am moving forward with my yoga practice.  I've also done my class at the therapy centre and 5 minutes on the recumbent bike this week.  So, all very encouraging and I am focusing on this rather than the fact it has taken me a month to get back to this point.

Yesterday I went to see my heart specialist, a lovely chap who seems genuinely interested in the enigma that is the heart and ME/CFS.  He is happy with the way that the Ivabradine is helping my POTs symptoms and wanted to know if I would be interested in going to a specialist POTs clinic
at the National Hospital for Neurology and Neurosurgery in London.    Off course I bit his hand off at the opportunity.  I'm guessing it will be the Autonomics department.  So, he has signed me off from his care, saying that I can come back to him if I need to and referred me to the specialist centre in London.  I didn't really thank him properly, so I think I will drop him a line.  It can be hard to find consultants who want to take the time to look into ME if they haven't had much experience of it in the past, or to look into your symptoms with ME in the equation rather than just as stand alone symptoms.  He has been prepared to read everything that I have shown him that I think might have been relevant, and agreed to testing that I suggested such as the tilt table and I feel we have worked together to try and improve this part of the jigsaw puzzle, for which I am very grateful.  I saw two heart consultants before settling on him and I also had a change in gastro consultant because the first one had suggested it was all in my mind and down to anxiety.  So, I would encourage anyone reading this who isn't happy with how their ME is being dealt with not to be intimidated by a white coat and to ask to see another doctor.  There are specialists out there and there are also those who are happy to learn along with you, just as my chap did.  I hope his experience with me will now educate any future interactions he has with people that are sent to him with a racing heart who also tell him they have ME.

So, things are pretty good right now.  I can also now go back to tightening up my diet again - there has been far too much birthday cake in my house over the past two weeks! - and look at trying to increase my cycling a little maybe, gently of course.

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