Went off to see the Prof yesterday. I did have a list of questions but didn’t get to ask any of them this time. However, he is going to see me in two months so I am hoping I can ask some questions then.
He has decided it isn’t POTS but is Inappropriate Sinus Tachycardia (IST). I’m sorry but the word “inappropriate” always makes me think of polite people saying someone else has been naughty – so I have a naughty heart.(David Goldstein in his book Adrenaline and the Inner World sees IST as part of the POTS family anyway cf. p 203)
Interestingly the Prof thinks if I had POTS my pulse would frequently go over 126 and for the 24 hr ECG it only went as high as 126. But he also commented about my high BP so I raised the question of hyperPots. I do still want this considered and norepineprine and dopamine measured if possible. (Got a nasty feeling this will entail an endocrinology appt and I can’t face yet another specialist)
I was under the impression that a standing pulse above 120 was pots but he thinks it would be much higher. The highest pulse I’ve ever recorded was 148 but it only gets that bad on truly bad days. (As far as symptoms are concerned I feel pretty yuk with a pulse at 115 and as my “resting” pulse hovers around 100 to 110 I feel yukky a lot)
So, for IST he has given me a drug called Ivabradine which I must start on low and work up. This is designed to treat angina and heart failure and should bring my tacky down. If you click on the link you’ll see it’s a recent discovery for the treatment of IST, so I’m pretty lucky because the Prof (bless’im) has obviously done his reading and is up to date on treatments.
He promises to keep at it with me ’til we crack this thing. I have to admit the lead up to the appointment I was getting nervous – which normally I don’t. But I so very much wanted him to be able to help me and I was afraid I was going to face one big “no show”.
Doctors always think that when results come back “clear” or worse still “inconclusive” that we should be so happy about it. But really patients who are very ill don’t want results showing nothing – they want an answer and a treatment. Having a doc saying “Your ECG showed…whatever” and follows this up with “And here’s a drug/treatment that might help” are like little oasis in the long desert of chronic illness.
There’s still a number of things to work at; my BP for one and the astonishingly wacky pulse pressures I get; sometimes as low as 10 but often as high as 60 to 70.
I seriously believe – though I might be wrong – that if I can get a HR of less than 90 and a BP that is stable, even if it’s a bit high, I would feel so much better. I know this won’t be an overall cure, especially if I do have ME as dx but it has to be a start in the right direction – which after 10 years is a relief.