Friday, 21 November 2014

Update on Ivabradine for POTs (Postural Orthostatic Tachycardia Syndrome)

I've just read back through my first entry after taking Ivabradine and thought it might be worth a very short update on how I'm feeling about the Ivabradine now.  Back then when I was first taking it, I comment on  the horrible feeling of malaise and heaviness that I got straight after taking it.  I am happy to report that this is no longer the case.  I fact next time I see my cardiologist, I am going to have to admit to him that the drug he nagged me to try for a year before I did is actually helping!  It is definitely bringing down my resting heart rate and controlling it at the higher end which is allowing me to be more active I think.  It's making a difference to the standing/sitting/bending down scenarios, so not an instant 20 or 30 heart beat rise on standing from sitting for example.  In my yoga class I am able (to some extent) to participate in sun salutation type moves that require lots of bobbing up and down.  This is something I could not have done before the Ivabradine.  However, just as with the pancreatic enzymes I used to take, as soon as I have any sort of relapse I seem to loose the effects of the drugs and my body just does it's own thing.
Two more things to note this morning.  After going 7 months without a period, I've now had two within 30 days of each other??!!!!  This has tied in with an extraordinary period of good sleep this week.  I have had three or four days in a row where I slept for 6 hours straight without waking, this is most unusual, my normal pattern was to wake at about 1.30 and 4.30am.  I'm dreaming lots too.
I haven't made it to physio at the therapy centre this week and I now really notice how the hardness in my thigh muscles gathers gradually if I don't do the cycling exercises.  I need to make sure I prioritise this to fit it in every week.  I have been letting it go for other things that need doing, but I am now convinced it is helping and definitely makes a difference.  I need to try and fit it in, but it's that old story of balancing out what can and should be done with the energy and time available.

Saturday, 15 November 2014

Solve CFS Biobank

Not such a good day today.  Spending the morning in bed in a hope to regain a little energy and strength in my legs.  Hopeful as ever I'm still thinking about the things I might do this afternoon, but realistically I'm writing today off so that I might be able to see my daughter play in a concert at the local theatre this evening.
Today is annual log delivery day and I'm sad that I won't be able to help out with that - it's a bit of an annual marker for me as to how I'm doing, if it had been last weekend or the weekend before especially, I would have been fine.  Fortunately, DS1 is getting older now and more able to help with moving and stacking the logs, but it's one of those jobs that's so much easier and more fun to do if we can do it as a family.
I had an email today from the Solve CFS Biobank which I am participating in.  If you have ME I would encourage you to sign up to this Biobank which will provide samples for future ME research.  If you don't have ME I would also encourage you to sign up as they need healthy controls to compare our blood with.  The website is here:

Friday, 7 November 2014

Working out with ME

I said in my previous post that this post would be about what I have been doing with my extra energy.  Well the first thing is that I've been enjoying it and not taking it for granted.  I've been very conscious and thankful for the added boost that I've been enjoying.
This energy boost has enabled me to put a few things into my week that I haven't been able to do previously.  The first thing I added was an extra yoga class, not only an extra class, but a normal class at a normal run of the mill sports centre.  Up until this point all my yoga had been at the local MS therapy centre.  A gentle class consisting only of poses done lying, sitting or kneeling.  Joining in with a normal yoga class has been very enjoyable. I still can't manage the whole class, I modify quite a lot and I dip out of some all together, but generally speaking, I think I do pretty well.  I still do my MS class too, so that's two yoga classes a week.
I also now go into the MS therapy centre's gym with the physio there once a week and spend some time on the exercise bike.  I cycle for 10 minutes going forward and for 5 minutes going backwards.  I keep under 60 revs per minute and I wear my heart rate monitor to make sure I'm not pushing my heart rate up and triggering symptoms - it normally sits at around 85bpm whilst I'm on the bike.  The cycling has been fantastic as it has somehow managed to help with the issue I was having in my thigh muscles where they were tensing up and being sore and solid.  The cycling motion is having a relieving effect on them which is wonderful.
I'm taking a great deal of pleasure being back in sports gear again 👟 even if it is only gentle compared to what I previously did, it still feels great and I'm enjoying it.
Sadly this week I have had a little slide backwards, hardly surprising with all the things we've had going on in the house.  It's been a very busy time and I have payed the price somewhat.  The stiffness in my joints has returned and the internal agitation in my system has been present, but worst of all my sleep pattern which had been excellent in recent months has been disrupted and for the last two nights I've found myself lying awake for hours in the early morning unable to get back to sleep.  I thought those days had passed.  Tomorrow I'm going to see my cranial osteopath.  His visits do often help my sleep, so I'm hoping he can work his magic tomorrow .