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.

Sleep

It's easier to look back retrospectively and piece together what's gone on.  I now think that the relapse that I had over a week ago was not down to the osteopathic treatment I had but down to a stomach bug that continued on through the family affecting son and hubby after me.  All the symptoms; nausea,  general weakness and bowel disturbance, were all things I associated with the early days of  Perrin technique.  The big difference was that within two or three days of a treatment I was getting back to normal, but this time it took MUCH longer.  So, it is confirmation that I'm now able to "catch" things, having had a cold and a stomach bug now.  After the stomach bug however it is apparent that recovering from these things is going to be a bit different from days before ME.  My energy levels were completely wiped out and took a long time to return.  Only in the past few days have I begun to feel like my energy was returning.  In true boom and bust style I then went completely bonkers yesterday.  I drove the girls across town to a shop, then drove to another part of town to go to a different shop.  I then walked down to the village with my little one and back again in the not most direct route.  What was I thinking?  Knew I had overdone it and spent the rest of the afternoon on the sofa.  Ant then had to come home (6.45pm) and cook the dinner and take DD1 out to her social event in the evening.  I feel bad about that after he's had a long day in the office.
Last night I was woken with some of the horrible night time symptoms I used to get in the early days;    Hot and sweating, heart racing and clammy feet.  In the old days that would have been followed by feeling cold and uncontrollable shaking.  Thankfully neither of these things happenned.  I watched some video in bed on my iPad and tried to take my mind off it whilst I waited for it to pass.
This morning I feel weak, so what of today's plans?  We were due to drive half an hour to visit friends, a short walk by the river, then back for lunch at their house.  I should probably cancel, but I  won't.  It's been ages since we've seen them.  I'll just do nothing until we have to leave and play it by ear when we get there.
Something strange happenned when I was recovering from the stomach bug, I had 4 really good nights sleep!  It felt wonderful,  for 4 nights in a row I woke only once during the night instead of my 2 or 3 times and the sleep felt very deep.  This sleep was still unrefreshing, but it still felt so good to have slept so solidly.  I was disappointed when this run of sleep came to an end and have been trying to think what might have been the factors that made such a difference.
There are several theories about what causes the sleep disturbances in ME.  There may be some dysregulation of the hormones dopomine and seratonin as we know that the endocrine system which produces them is often dysfunctional in people with ME.   I like this description from the About.com website:
"If the sympathetic and parasympathetic are out of balance due to autonomic dysfunction, it could put you in a state of heightened arousal and awareness when you're trying to sleep. It's a lot like how a   new parent is always on alert for a crying baby, never really getting into a good, deep sleep."  That's how it feels to me.

Monitoring energy levels

It hasn't been a great week energy wise.  Last Monday was the worse day, but then I gradually improved during the week.  I always had the sense though that fatigue was just under the surface and any small exertion would bring it on.  On Thursday feeling somewhat better I went for a small bike ride down to the village but the minute I had to apply any real pressure to the pedals my thighs complained.  I was good for nothing when I got back.  On Saturday night I went to the pub to celebrate a friends birthday and very sensibly left at around 9.30pm and didn't go on to join the others in the curry house.  I came to the conclusion as the week went on that my body was busy fighting off some sort of bug this week.  It never did develop into a full blown cold but it has had an effect on my symptoms.
I rested all day Sunday knowing that Monday would be a big day out, and so it was.  I took a train to Bath and had a lovely day Christmas shopping with a girlfriend.  We pounded the streets for hours, stopping twice to refuel.  I felt good all day until about just after 3 o'clock when my thighs started to weaken.  Our pace had to slow, but we made it to the last two shops we wanted to visit and then onto the train.  I couldn't do anything else in the evening, but I had had a good day.
This morning I'm sat typing in bed.  My body is tired from yesterday's activity.  I woke at 5am which is so annoying.  it's annoying that the fatigue you feel with this condition doesn't translate into sleep.  How I would love to sleep from 9pm to 7am one night.  It's 7.53 and normally I would have been up for an hour and a half at least by now but today I am going to have to take it easy.  It makes me think that the whole Christmas period is going to be one of boom and bust for my energy levels which is not a sensible way to go forward, but at times unavoidable.  I think some of the features of Mickel Therapy will be useful over this busy period.  I need to put myself first, do what I want to do, be prepared to say no and go for it (also known as pushing through and not recommended by many).
I think I need to refocus on my levels of activity.  I found reading this article about exercise levels helpful:
Experiments with exercise

I am contemplating asking for a cheap heart rate monitor for Christmas. 
 I am a bit nervous about this asdon't want to get paranoid about what my heart rate is doing, but
equally I do think it might be a useful tool to monitoring the effect that different activities are having on me.

Perrin technique and what a difference

What a difference a day makes.  A quick entry as it is late and I need to go to bed, but I want to jot down how I've been feeling before I forget.  Yesterday I was so high and so I was when I got up this morning.  I felt good and decided to have a sauna.  It was weird, normally I lie in my sauna bag for a good 25 minutes and during the last 5 minutes have a horrible feeling of clamminess and desperate need to sweat before it actually happens.  Today was a little different.  I got hot, but then I had a strange feeling of coolness again and then I got hot and then coolness again.  At first I began to wonder if the sauna was working properly, but then the thought occurred to me that my body might be trying (and succeeding to some extent) to cool itself.  Was my body trying to regulate itself perhaps?  I don't know if that was what was happening, it's what it felt like and that would indeed be a good thing.  Retrospectively though, it probably wasn't a good idea to sauna on a day I'm going for a Perrin treatment, I don't think I'll do that again.
Ant dropped me in the car to my appointment.  I was still feeling great and my physio could tell I was feeling good.  Each time I've gone (this was my fourth visit - third proper treatment) it has got a little more intensive and today she did an awful lot and worked for quite some time on the thoracic area of my spine, trying to mobilise it.  It all felt like one of those likable discomforts, it didn't feel very comfortable, but I wanted her to do it.  Anyway, I think my body went through it a bit on her table today.   I felt a little light headed walking home.  I iced the top of my spine when I got back and after about half an hour of being home fatigue set in, I felt sick and had a headache.  I sat and watched a Star Wars film with DS, forced down some lunch and by 2pm I had to go to bed.  What a drastic change from how I had left the house earlier in the morning.  I slept for an hour and a half and then meditated and just led there for another hour and a half.  I got up at 5pm feeling somewhat better.  It made me think that maybe morning appointments  aren't a good idea as they might wipe out the rest of the day.  So, at least today I do feel that the treatment has had some effect on my body.  Think I might be a bit achy tomorrow.

My littlest hasn't been very well today.  He's had a temperature and not wanted to do anything.  I have taken the opportunity to sit on the sofa with him.  We have watched a film, read a book, played a board game and card games.  It was all very relaxing and I probably needed it too.  My level of activity has definitely increased in the past couple of weeks and I need to be careful not to overdo it.
I had a cranial osteopath appointment two days after my previous blog post.  I went in very positive mood, but he did not seem equally positive (which he had been on my previous two visits).  Anyway, the day after the appointment I had a low level feeling of malaise which lasted about a week.  I wonder if he could already feel whatever it was that caused that in my system.
My meditation practise has slipped a little since Christmas.  I've taken this to be a good thing - that I haven't really felt like I have needed it.  Okay in the short term, but I've found this week that I've felt like I needed it.  I think it has a cumulative effect and even if I don't manage two meditations a day I'm going to try and do one.
Sleep has been pretty good, but waking early, about 5.30am.  Doesn't seem to make any difference if  I go to bed any later either.
I came across an old diary from last year recently and was pleased to read through some of the entries which detailed symptoms I was experiencing at the time.  It was just another reminder that my progress is all going in the right direction.