Tuesday, 18 February 2014

Ivabradine, an update

I have been taking Ivabradine for nearly two weeks now and it's been a bit of a mixed time.  It didn't start off too well, for the first two days about an hour after I started taking it there was a horrible feeling of malaise and a real heaviness in my legs, going upstairs was hard work, it felt like ME symptoms.  On the afternoons of those days though it would clear and felt okay.  That was followed by two and a half days with an almost constant headache.  Not a bad headache, but just there in the background, and then that disappeared and I felt fine.
The Ivabradine has definitely had an impact on my heart rate.  My resting heart rate has now dropped to the late seventies early eighties.  When I stand, I do still get an increase in heart rate, but not the previous thirty beats per minute increase, it goes to early nineties and maybe peaks at 100.  Which is great, because it used to go to 115 or 120.  My body does feel a little calmer internally.
I suppose in the back of my mind I was kind of hoping maybe I didn't have ME at all, and that all my symptoms were down to the POT-syndrome, so once I started taking this medicine all would be well. Sadly, although my heart is calmer the ME is still there.  This was tested this week when I had a late night (11pm) and woke the next morning with a very weak body.  I haven't put my body through any real physical test since starting the Ivabradine, so will be interested to see how it reacts to that.
It appears to be a very short acting drug, there have been a couple of morning where I have woken and my heart rate has been raised, it's like the effects have worn off until I take the next dose, so the Pharmacist has told me to try and take it very regularly at accurate 12 hourly intervals if possible.  Almost two weeks in I'm feeling better about taking it and don't seem to have any negative side effects.
I've had two appointments recently.  On Friday I had a Perrin appointment and felt okay in the afternoon (which is when it normally gets me), but felt rotten the next day.  Fortunately I had a cranial osteopathic appointment that day and that made me feel better and I slept well that night.
Generally sleep is bad at the moment.  I am waking my usual couple of times in the night and managing to go back to sleep well, but then I'm just waking really early in the morning - around about 4.30am at which point I can't go back to sleep...IT'S TOO EARLY!  If it carries on I am going to consider taking something, maybe Valerian or the Melatonin that Dr Myhill recommended, but I really don't want to be adding any further supplements to the list if I can avoid it.
Today I got a phone call from The Royal Salford Hospital saying that I had an appointment with Dr Mukherjee at her ME clinic.  She is an endocrinologist with a special interest in ME so I am going to travel up to Manchester to see her.
I am back on a much more strict Paleo diet.  I have been reading an awful lot about gut microbes, leaking gut and fermenting gut in ME that I feel it's worth giving it another go.  Refined sugar has gone along with most grains and dairy.  I guess it's not surprising that the chance you might feel a bit better is a very good motivator and I'm not finding it that hard really.  The exception to this is when i eat out with friends and I am allowing a few indiscretions then.
My trampolining is now up to two minutes a day (when weather allows) and my feet are now leaving the trampoline : ) 

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