POTs Treatment (Postural Orthostatic Tachycardia Syndrome)

On Tuesday I took a trip to London to attend an appointment at the National Hospital for Neurology and Neurosurgery .  I had been referred by my heart consultant and I was really happy to have this referral as I knew that my heart consultant had got to the point that there was no more he could do for me.  I had naively thought that a hospital of neurology would also be able to help with M.E. as well as the POT syndrome (which I just consider a symptom of my M.E. really).  However the consultant I saw was purely focused on the POTs and made it clear that she was not an ME specialist.  It seems strange to me that when 80% of people who have ME also have POTs, that a POTs doctor wouldn't have a greater knowledge of ME.  They must see lots of people with ME.  There is also the issue that when you have ME a multi faceted condition, surely it is difficult to just isolate one issue and deal with it without taking the other situation into consideration.  One of the non drug treatments for POTs for example is exercise, well there's a reason I need someone who has an understanding of  managing exercise with M.E.  I mentioned for example that I was very interested in the work of Dr Nancy Klimas in the US, who is using a "below anaerobic threshold" exercise programme with her ME patients, but was told that they couldn't help me with that.
So, lets set all that aside and just say that I was hoping for a slightly more all around approach to my current condition.  What I in fact got was a very detailed and specialist approach to the POTs which regardless of the above paragraph, I am very grateful for.  I had known for example that I needed to increase my fluid intake, but couldn't find out any specifics on by how much and I knew I had to increase my salt intake, but couldn't find out by how much, so all this verbal information was very useful.
I had a very thorough physical examination where I was checked for hyper mobility in my joints.  It appears only my elbows are hyper mobile and I scored a low 2 out of 9 in that test, which is good and all my reflex reactions were tested and were all normal.  So, physically I did well and the doctor said that was good and a little unusual.  My heart rate was 107 sitting and only rose to 112 on standing - this is where the Ivabradine drug has really helped me. 
The doctor took a detailed history and asked me if I wanted to attend a support group which i declined at this stage thinking it not practical with the travelling involved, but I might take them up on that at a later date.
They are going to give my autonomic system a good check over, with two days of testing  including another tilt table test, 24 hour blood pressure and heart rate and blood tests.  There are different types and causes of POTs and when they have all this information they will be able to then offer a more accurate treatment programme.  I was given the choice of travelling up to the hospital on two consecutive days or staying over.
So, I came away a little disappointed that I wasn't going to get any specialist ME help, but happy that if they can treat the POTs and ease the symptoms, that should make everything in general easier.
Whilst I wait for my appointment to come through I need to increase my fluid intake to 2 to 2.5 litres, take salt with every meal up to a full teaspoon a day and try and continue with any exercise I can do, but specifically, recumbent cycling and swimming - both very good for POTs and my yoga practice.  The idea with exercise is that you build good strong muscles in the legs which then squeeze and support the blood vessels in the legs to help pump the blood back up.

Energy wise, it's not been a great couple of weeks, I still haven't been able to do the normal yoga class but am enjoying my yoga at the therapy centre.  It has also been a time of emotional stress, both good and bad, which always has an impact physically.  I need to focus more on pacing and continue with tightening my other protocols until my reserves are a little stronger and then keep going with more of the same!

Fustrating ME relapse

I really dislike writing when I'm having not such a good time, but this phase has been going on too long now and I need to get it down on record.
I haven't really recovered from our New Year trip to Copenhagen.  I knew at the time that I was pushing myself, but I hadn't quite realised how much.  I have no reserves of energy to draw on right now.  Even my normal baseline activity is more than I can manage comfortably at the moment.  On Friday I went to my yoga class and that has wiped me out again.  Today I went to my really gentle yoga class  and tonight I am feeling muscle fatigued and just have that internal agitation in my system that I can't put my finger on.  I need to go and see my cranial osteopath, he helps when my body feels like that.  After having a period of really, really good sleep a couple of weeks ago, I'm now waking 4 or 5 times a night, it's so annoying.
I have refocused on my Perrin technique massages and again on my diet.  I feel a bit useless right now, everything is such an effort.

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.

Paying the price with my ME/CFS

My previous blog post was on the 2nd January and reading it back now, I was on such a high from the activity I had managed over New Year.  I was also aware at the time that I would probably have to pay the price at some point.  In fact I was on such a high and probably had so much adrenaline going through me when I came back from Copenhagen that the following morning I decided I could go and do a normal yoga class.  It was after that yoga class that my body decided it had had quite enough thank you very much and I fell or dropped (as that is how it feels) into a state of constant fatigue.  During this time, everything becomes such an effort and there are no reserves.  No reserves of energy to pull on and when you ask something of your body it just cannot respond.  It took until the 19th January before I started to feel anything like back to my "normal" and since then I have been VERY careful.  It's a delicate balance now and a case of rebuilding some sort of reserve by taking care of myself and making sure all my "recovery protocols" are in place.  January is always a busy month in our house with three birthdays in the space of two weeks and this month we have also been choosing a school for dear daughter 2 to do her A levels.  Fortunately, that decision has been made this weekend and that is one less thing for me to have to think about now.

One of the frustrations of having such little energy this month is that the lovely little exercise program that I had been doing and so enjoying, before Christmas - 2 yoga classes and one session on the exercise bike every week - has had to be put aside.  I worry about how long it will take me now to get back to being strong enough to be able to do this again.  How much has that wonderful New Year weekend away set me back?

All the more frustrating as my excellent Christmas present was a Kettler recumbent R exercise bike:

It looks like a bit of a beast and it is!  I love it and can't wait to get on it regularly.  Being recumbent keeps my heart rate down and I get almost instantaneous relief from painful quad muscles by "flushing through" my thigh muscles as I cycle.
It is electronic and I can program it in lots of different ways including by heart rate which will be useful.
 Right now I will just use no resistance and program for a certain amount of time.  It has a great ear clip heart rate monitor built in which works really well.  Young Ben is having lots of fun with it  and building his thigh muscles and stamina too!  I'm hopeful that this week I might be able to get back to it, but need to be cautious, I have to be patient as I know so well that exercise at the wrong time will just set me back further.  It is an annoying wait when you just want to get on and DO.

A Step up in Steps - the Fitbit keeps track

What a stupendous end to 2014.  A city break away in Copenhagen saw my past four days step count look like this:
11,088
13,818
21,183
9,389
Yes, on New Years Eve I walked 21,000 steps!  Even more impressive because of the 2 high step count days that preceded it.  Those first two days felt really good, my body coped well.  The 21,000 step day (which is 9 miles by the way) started well but became very challenging.  My legs were soooo tired  I was determined to push on as we were away on a holiday and  wanted to squeeze  as much as possible into our short break.  The thing that seems to work for me is taking lots of rests - some walking - sit down - more walking - sit down and so on, it definitely means I can go on for longer if I take this approach.
Did I feel good by the end of it?  No, of course not. At the end of each day, I arrived at the hotel room, got into the bed and stayed there (6.30pm on the first day)  BUT, so far I haven't had what I would call a relapse, so, I didn't get that horrible feeling where my pulse is racing out of control and my body feels like it is on the very edge and my nervous system feels so frail.  No, it didn't feel like that, I just felt weak and like I couldn't take another step a bit like how a marathon runner looks after crossing the line and needs to be supported.  I was supported, there were times when my family swooshed me up, one at each arm pulling me forward so all I had to do was literally lift my foot and there was a forward motion, or walking up steps with my hubby pushing from behind, it all helps!  I was touched by the children checking on how I was doing.  I don't want them to think I am any less able than them - that I find hard - but, it was nice to see them being so thoughtful, even little Ben at one point put his arm around me as I walked along to ask how I was doing.
The hardest point was probably yesterday at the airport with long walks to gates and lots of standing in line.  I know I have said this before, but it still surprises me that standing in line is harder for me than moving.  I understand now that this is probably due to pooling blood and do my best to keep moving by rotating ankles etc, but this too is hard of course if you are fatigued.
I realise of course that with the delayed fatigue that is so typical with M.E. I am not out of the woods yet, however, now I am at home I am more in control and can relax and do only what I need to do.  I can't help but think that all the yoga and recumbent cycling I have been doing for the past few months has really helped me unknowingly prepare for the past few days.  I hope I can continue with it and push my recovery on still further this year.

Tivoli Gardens early on New Years Eve.

Graded Exercise therapy and ME / CFS

Yesterday I went to see my Perrin therapist.  She was pleased to see that I was doing well, it had been 6 weeks since my last visit and that has been a pretty good time in general. She believes that the recumbent cycling I have been doing with no resistance has been flushing through my thighs and getting the lymphatics moving.  It was also nice to hear her say that my thoracic spine area felt spongey, which means it has some movement in it, whereas in the past it has been rigid with no flexibility, this has to be down to the two yoga classes I'm managing a week.
So, my therapist pointed out that what I'm effectively doing is Graded Exercise Therapy (GET) and I guess it is, but here's the nub...if I had been asked to attempt what I'm doing now 4, 3 or even 2 years ago, it would have thrown my body into a spin.  At this point, I am the strongest I have been in my recovery, I know pretty much what my body can and can't handle activity wise.  I know what sets off my nervous system and I know when I need to use coping strategies to try and calm it.  Don't get me wrong, I am in no way in control of my body, but I am much more able to manage it.  Attempting to do this sort of exercise when you're not first this strong would be absolutely the wrong thing to do and I think that's the problem with GET being one of the main treatments suggested by the NICE Guidelines for ME/CFS.  Attempting GET before the body is ready is  going to make things worse.  However,  if you also have Postural Orthostatic Tachycardia Syndrome (POTs), which many ME sufferrers do (often unknowingly),once the body is strong enough to tolerate some form of light exercise it can be helpful.  Dr Peter Rowe MD of John Hopkins Medical Centre has been doing lots of research in this area.  http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/orthostatic-intolerance-and-cfs-resources
So, the usual has happenned, as I have been feeling gradually stronger, I have been relaxing my regime - wrong thing to do! - and as Christmas approaches the main thing I've released on is my intake of refined sugar.  Yesterday was a bad day for this.  I'm not going to beat myself up over it, but, today I am going to pull the reins in again on this particular facet of my regime because I do feel it has played an important part in helping me with my recovery recently.  My next Christmas "event" is not for another 6 days, so I'm going to be pretty careful with sugar until then.  The positive thing is that since I've reduced my sugar intake my tastes have changed substatially and I now really don't want anything too sweet.  I'm going in search of a no sugar gluten free mince pie recipe as they are normally a staple in our house at this time of year, but right now the thought of biting into one doesn't appeal at all.  If you have any sugar free Christmas recipies please share.

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.