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!

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.

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.

Muscle acid and ME/CFS

Yesterday I had my second "go" at the "normal" yoga class.  Whereas last week I spent the whole lesson smiling because I couldn't believe I was taking part and managing so well, this week my face was more serious,  showing much more earnest concentration.  I'm not sure this was a good thing as a couple of times I had to check myself from pushing and trying too hard.  I can't help that, it's in my nature and something that I have struggled to deal with mentally - the having to hold back and pace oneself.  I enjoyed the class and managed about three quarters of the poses.  I was most happy with the fact that there was quite a lot of bobbing up and down from front lying, to forward bends on the feet to completely upright and then down again.  Normally this sort of activity induces nausea and post exertional malaise due to Orthostatic Intolerance (OI), but yesterday I coped well.  I didn't manage it all, but, gave it a really good go.  So, maybe the Ivabradine that I'm taking for the OI is having some effect.  Unfortunately, the battery had run out on my heart rate monitor so I  was unable to check what was happening with my heart rate whilst I was doing all this bobbing up and down.

Talking of monitors, I have decided not to wear my fitbit this week, I did 47,000 steps last week another good one for me.  In fact, I'm not sure how I'm managing that as my thigh muscles are so sore all the time, sometimes my knees too.  Most of the time I am ignoring it and Ant kindly massages the knots out of them every morning.  I am convinced this discomfort is acid build up in the muscles, this is an interesting article about that  In my case, exercise of the thigh muscles seems to mean walking!  I am going to buy some beetroot juice today as I have read that drinking it helps to remove acid from muscles.  Ant has also been encouraging me to breathe more deeply as the pain you feel in your muscles can be caused not by the acid but by accumulating too many hydrogen ions in the muscle, getting more oxygen in and more carbon dioxide out can help with this.  Anyway, my muscles are struggling with activity and it's difficult to know what to do for the best - push through or rest them.  At the moment i'm pushing through, because if I wait for them to be "OK" i'll be waiting a long time and not doing anything.  Back to the Fitbit, I've been wearing it everyday for 18 months and I love it, I just thought I'd give it and me a week off!

Ivabradine and ME crash

I've been taking the Ivabradine to help with Orthostatic Intolerance for over a month now.  It has undoubtably had an effect on my heart rate which is great, if I am sitting my HR can go down to the mid 70's now and is quite often in the low 80's.  When I stand it slowly rises to low then mid 90's  but not over 100 (these are generalisations).  I was interested to see then what happens when I experience a crash with my ME symptoms and for the purposes of research obviously my body kindly let that happen this weekend!

It was triggered by a meal out with friends on Friday night although I have to acknowledge that the week leading up to Friday had been pretty stressful, visiting my mum in hospital after she had had surgery.  Anyway it was 11pm before I got into bed on Friday and I woke Saturday morning feeling like I had drunk 3 bottles of wine the night before not the 2 glasses of bottled water I had actually consumed.  In regards to the ivabradine, what I noticed was very similar to the pancreatic enzymes I have taken - when my body is doing well, the medication has the desired effect, but when I crash the medication seems to have little effect.  My base line heart rate whilst sitting went up and was high, although there still did seem to be some control over it when I stood, it didn't go as high as it did pre-medication.

The other thing I have noticed over the last month with the Ivabradine is that I am getting  palpitations again, something I haven't really suffered with lately.  They are not nasty, fast palpitations, they are slow and the best way I can describe them is empty or like echos, a hollow feeling in my chest.

My heart rate is definitely down and that's a good thing, but I can't actually say that I am feeling any better as a result of taking the pills YET.  By Wednesday I felt I was starting to recover from the weekends crash - I had such weakness in my thighs which finally went on Wednesday - so now I'm on the way up again and we'll see how it goes.  The theory is that reducing the heart rate allows you to tolerate light exercise and that being able to exercise will help the POTsyndrome.  Is anyone else out there taking Ivabradine for their ME/CFS?

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 : ) 

Ivabradine for POTs

Today I had an appointment with my Cardio consultant at the local hospital.  At my previous three appointments he has asked me to try the drug Ivabradine to see if it would help my Postural Orthostatic tachycardia Syndrome (POTs).  I've been holding off, hoping that my heart rate would sort itself out as my other symptoms improve, but it hasn't really happened.  Anyway, yesterday morning, knowing I had the appointment today I took my first dose of Ivabradine.  I took it at about 6.30am and felt pretty rotten with a feeling of malaise and heaviness most of the morning.  Stairs were the worse with a horrible feeling of gravity pushing down on me as I climbed and very heavy legs.  In the afternoon I felt better and my heart did feel calm.  I put my heart rate monitor on for a couple of hours and my impression by the end of the afternoon was that there didn't seem to be much effect on my resting heart rate which was around 86 bpm whilst seated, but that it might be having some effect on my change to standing.  When I stood my heart rate was staying in the low 100's (up to 105), whereas some days standing can take it to 115 to low 120's.
I took a second dose at 7pm and felt horrible again but not for so long this time and when I took the third dose this morning again I felt horrid and heavy, but not for very long.
So I went along to todays appointment able to say that at last I had tried it.  My ECG heart rate on getting there was 105 bpm and my Doc didn't think the Ivabradine was really having any significant effect.  He suggested that I try it for a month - it is only day 2 after all - and when I'm a bit further in to the month he will do a 24 hour trace so we can get a picture of what's going on and whether it's helping.
Ivabradine is an angina drug and is not licensed for POTs, but some doctors have trialed it and had success with it for treating POTs - Article

Dr Myhill Update

It's been over two years since I've had an appointment with Dr Myhill, so having recently had some up to date blood tests done by my Gastro doctor I thought it might be a good time to have another chat.  I sent the results and some of my more recent correspondence from my heart and gastro doctors up to her office and yesterday we spent half an hour on the phone talking through them.
Dr Myhill's first comments were about the fact that she thinks my thyroid is underactive as my TSH levels are borderline high.  This is important because if the thyroid is underactive then the mitochondria cannot work fast enough.  The thyroid also controls the number of mitochondria, so it might be that the mitochondria are working properly but there might not be enough of them.  The idea is that if you can improve how the thyroid is working it will give energy production a boost.  There is however a problem with treating the underactive thyroid as the medication normally raises heart rate - something I could do without.  So, it would have to be given in very small doses.  It's not an issue yet, as before you can treat the thyroid, the mitochondria need to be working properly in terms of how they are converting energy,  if that's not happenning then there is no point boosting the thyroid.
We talked about the POT syndrome.  Dr Myhill thinks it would be better not to take the Ivabradine.  This drug will just treat the symptom, but not do anything to help alleviate the cause.  She is sure my heart is beating too quickly because it is not beating strongly enough (due to mitochondrial malfunction) and therefore it has too beat more frequently to do the same job.  Once the mitochondria are repaired, it should return to normal.
We had an interesting discussion about exercise.  I have been feeling very pleased with myself when I have had enough energy to go for a swim at the hydrotherapy pool, but Dr Myhill says it's not a good idea - I'm just wearing myself out - and it's not the right sort of exercise.  The sort of exercise that will help is very short bursts of raised heart rate, so 60-90 seconds of 160 bpm for example, but she also thinks my body is not quite ready for that just yet.  So, swimming might not be the best for me at the moment, but it does give me some sort of psychological boost, because my body feels like it's actually doing something and I like that - even if it is just wearing me out, I might still do it.
Going back to the blood tests, there were a few other things of note.  My C-reactive protein (CRP) was high.  The CRP level is a marker of inflammation in your system.  I did have a bit of an infection around the time the blood was taken and this may have been the cause of the raised levels, but Dr Myhill thinks it would be a good idea to have it retested.
My Creatinine levels were low.  Low creatinine can relate to low muscle mass, which I guess is hardly surprising after 4 years of no real exercise other than day to day activity.
I also had high levels of  Eosinophils, these are produced to fight off allergic reactions or parasitic infections, so when the feacal elastase test that I'm waiting for is done she has suggested that I ask to make sure its also being checked for parasitic infection.  Lovely.  I'm also definitely going to have some sort of food testing done too although I'm not quite sure where or how yet.  Dr Myhill has suggested a RAST Test.
On a positive, my vitamin B12 levels are high which is really good for energy production, so it looks like supplementation of that is working well and all the readings for my kidneys and liver were normal.
We also talked about Perrin technique and I told her that i thought it was the single thing that had made most difference for me in terms of how well I feel on a day to day basis.  Dr Myhills view is that on working on the lymphatic system, Perrin technique is helping to clear away all the debris created from the cell damage taking place and that that is making me feel better.  It sounded like she thought, although it's helping, it is not going to ever get to the root of the problem.  As it is helping, I will continue to use it.
So, I think that was everything, she has written to my GP and Heart consultant and I am going to go ahead and have my mitochondria retested.  I am very nervous about that, I will be very disappointed if there has been no improvement in the last three years since my previous test.  Hopefully, all the supplementation, treatments and sensible activity levels since then will have helped to improve the way energy is being created within my cells.  I hope so.

A really annoying elevated heart rate

Feeling rubbish tonight.  Haven't really to the energy to blog, should be in bed, but I want to get everything down whilst its fresh in mind.
On Tuesday afternoon my heart rate went up and was still up this morning.  Unfortunate as this afternoon I had an appointment with my heart consultant.  I was hoping he was going to sign me off today but instead he has prescribed a new drug, Ivabradine which works on the sinus node to regulate the heart rate.  I told a him I'd like to hold on to it and see if my heart rate settles in the next few days.  It has calmed a little already so I am hoping not to use it.
My heart Rate rises when my body is fatigued, but this week I couldn't connect that fatigue with any particular activity that I'd done.
Couldn't finish my blog post last night, just too exhausted.  The dilemma of being down stairs knowing you should be upstairs in bed, but it just being too much effort to get there, getting up the stairs, getting undressed, brushing your teeth and getting into bed all seems like far too much effort.  It's like those days when I come into the house and sit down and it's just too much effort to take my shoes off.  Ant has had to remove my shoes on more than one occasion.  I'm detailing this not to be negative, but because it happens so infrequently now, I need to remind myself.  I used to be like this all the time.
This morning my heart rate is still elevated, it wasn't a brilliant nights sleep, but I feel better than last night.
Going back to why this might have happenned, last week I did walk more than I have normally with no negative effects at the time, this could be an accumulative result of that I guess.  My best guess is that it's connected to my menstrual cycle.  I am now on day 54 of my cycle, haven't had a period since November 19th and these symptoms could be a build up to my next.  I think this is most likely.
Yesterday whilst at the hospital they took some bloods to test my hormone and thyroid levels again, they haven't been done for some time.  I should get the results Tuesday or Wednesday next week.
My fitbit tracker arrived on Tuesday and I had great fun watching it Tuesday and Wednesday but didn't wear it yesterday due to how I was feeling, nor will I wear it today.  Is it just coincidence that my heart rate went up the day I attached my tracker?

A milestone

This afternoon I have been to the hospital to see my heart doctor.  I like him alot.  He isn't patronising and I just like his approach.  He says he doesn't know much about the connection between ME / CFS and Postural Orthostatic Tachycardia Syndrome, but he has been prepared to find out and has obviously enquired around the subject.  He takes an interest in the information that I've had from Dr Myhill and from the CFS centre at the Hospital for rheumatic diseases in Bath.  I get the sense that he's one of those people that just goes the extra mile.  Anyway today I have come away from the hospital feeling very emotional - I managed to hold it together until i got outside the building and then felt myself welling up.  This afternoon I was told I could try and come off the heart medication, stop taking the beta blockers.  Why does this make me feel emotional?  Because, when I was really poorly, right back in the early days of all this, I said to myself that I would know if I was recovered when I could come off the beta blockers and my heart was back to normal.  Now, clearly I am not yet fully recovered, nor would the recent tilt table test results say that my heart is reacting normally, BUT this is a big milestone.  I have been taking these tablets for two and a half years and there have been times when I've thought I would just have to keep on taking them.  To be able to stop is just a momentous sign to me of how far I have come and I feel emotional again just typing this.  I am getting better and I am getting stronger.  It easy to forget this and just get bogged down in the day to day - this week hadn't been particularly good (the fatigue finally subsided yesterday afternoon), but in the grand scale of things the general direction is definitely up.
He went on to say that if it doesn't work out coming off the beta blockers then there are other treatments he could try.  One of them is the Ivabradine which we have already discussed, but he also told me about a doctor in Bristol who is having good success.   He uses a drug which restricts blood flow to the stomach, this process leaves more of your body's blood free to circulate in the rest of your body and this really helps.  So, he basically said there are other options he can look at.
Although the ECG I had done at the hospital today was a bit up (always seems to be when i have it done there), the 24 hour ECG I had done earlier in the month had been good, a low of 69 bpm, a high of 117 bpm and an average of 79 bpm.  This sounds pretty normal to me.  Obviously I did very little that day as I wanted it to be low and I did have the beta blockers in my system, but even so, really pleased with that.  Once I'm off the beta blocker the doctor did say that if I find I'm having a bad day I could just take one as and when I feel I need to, but I'm hoping I won't need to.
He also said he was going to write to a Gastro colleague of his to ask about pancreatic efficiency testing.  I am doing my best to put all the right things inside my body, both through nutrition and supplements, it would be really useful to know how much of any of these are actually being absorbed by my system.
All in all I am feeling really happy about today.  Ant said that he was really pleased for me as I have worked really hard to get myself to this point and it is paying off.  He's right, I have, with his support, the last almost three years have all been about trying to get better, doctors appointments, hospital appointments, blood testing, other testing, drugs, nutrition, supplements, pacing, resting, reading around the subject, positive thinking, meditation, mindfulness, cognitive behavioural therapy, saunaing, cranial osteopathy, mickel therapy, perrin technique and just generally managing the situation.  I am going to carry on with more of the same and hope that my recovery continues to go from strength to strength.  Now I have made it to this milestone what will it be next.  How will I know when I've taken the next big step forward I wonder.
So, tomorrow I will reduce my medication again and take it like that for the next month and then on the 1st July I shall stop taking it all together.  Yipee!

Tilt table test

What a horrible day yesterday.  I went to the hospital to have a "head up tilt table test".  My appointment was at 1.30pm and at 1.20pm I was striding down a corridor in the hospital on my way to the Cardiac centre feeling really good.  As I strode my mind went back to the first few times I had visited this department with my husband Ant.  At that time I couldn't use the stairs to get to the first floor but had to use the lift and then the walk down the long corridor to the cardiac centre was such an effort for me.  Not this time, this time I was up the stairs without a thought and striding purposefully in the direction of the test.
A nurse sat with me in the waiting area until we were called to go through to the lab where the tilt table was.  First I was attatched for ECG readings and then about 4 different blood pressure monitors.  My arm was put into a sling to support one of the blood pressure monitors and then I was strapped onto the table which had a foot plate at one end.  The doctor came in and explained what might happen and had a quick chat and then he handed me a fountain pen to sign the consent form - not easily done strapped in with monitors on two fingers and arm in a sling, so that was funny.  Then they dimmed down the lights and then started to tilt the table up.  I thought I was going to throw up, it felt like my head was being left behind.  When the table was at 70 degrees it stopped and there I stood for 40 minutes trying my hardest to meditate and take myself away from the room where two doctors and two nurses stood and sat watching me and the computor screen.  When the 40 minutes were up I was lowered back down again which was really wierd because even when I was lying flat my brain thought my feet were higher than my head.  I was unstrapped and then had a chat with the doctors over the results.  The best thing is that my blood pressure was fine and responding in a way which they were happy with.  My heart rate however was more of a concern 120 or 130 beats per minute, peaking at 160 bpm, not so good considering I was standing still.  The doctor's thoughts are that this is probably a problem with the endocrine or nervous system.  He thinks there is a good case for increasing my betablockers - he would suggest 5mgs (that's 8 times what I'm taking at the moment) or taking the other drug that was recommended Ivabradine.  He did say I would make an interesting research project for a doctor that had the time and money.
The conclusion then, that my hearts beating too fast and they don't know why.  No further forward.  This is fustrating.  I managed to drive home, but then felt horrible, irritable and tired.  The doctors can't tell me why this is happening or whether it will sort itself out and go away.  He did say today though that my heart can't go on beating like this in the long term.  It will get tired and that will cause problems.  If it doesn't sort itself out at some point I am going to need to take more medication.  I am still hopeful that Dr Myhills protocol will continue to strengthen my systems and that this will sort out my heart rate.  Once home the realisation set in that my heart had been beating fast for 40 minutes which is probably enough to trigger one of my night time funny turns.  I went to bed and didn't sleep well, I was awake betwen 2am and 4.30am BUT I didn't have a turn.  This is very good.  The stress of the tilt table test (emotional and physical) was a test for my body which I feel it has passed. 
I felt better on waking this morning, then had a blip mid to late morning when I went out, but have got better as the day's gone on and my heart rate seems to have settled back into it's normal pattern - about 92bpm at the moment.
I had a letter today from the CFS service from the Royal National Hospital for Rhuematic Diseases in Bath.  The lovely specialist I have seen there - Dr Janet Grey - has left the service and do I want to continue using the service.  This is such a shame, she was so knowledgable.  I'll give them a call tomorrow and see what the options are.