BREATHING 2.

I've written a lot about the topic of breathing in the last year or so. It began for me when I was tested in the Breakspear Clinic in England, and shown to have a lack of carbon dioxide (CO2) in my system, and a lack of oxygen (O2) getting to my tissues.

I have done some more investigation myself about this. It seems that you need oxygen for energy production, and for all the basic processes in the body, especially the central nervous system. And yet the way that O2 gets to the various parts of the body requires a certain level of CO2 also, the chemical process involves an

exchange between the CO2 and the O2 before the oxygen can be picked up by blood cells and transported. Without sufficient CO2 your tissues can't get enough O2.

This is how I understand it, how it has been explained to me, though it is no doubt a little simplified, and may not be 100% scientifically accurate in all the terminology. But the central point remains, we need carbon dioxide to function properly, and to get proper levels of oxygen to the parts of the body that need it.

I have also written about a rebreathing mask that Breakspear gave me, a mask that I wear for about five hours at night in bed. The mask traps the CO2 that I breathe out, and so increasing the levels that I breathe in, thus upping the levels of CO2 in my system. I have had a few hiccups with it, but in general the mask has made a definite difference in my life. I have a little more energy and stamina, have been able to lead a slightly fuller life than pre-mask days.

A while after starting the mask, I began doing some breathing exercises. They were recommended to me by someone who called himself a "breathing expert". I was initially skeptical, - as anyone self-describing as an "expert" of any kind I think should be taken with a pinch of salt. Yet I gave it a go. He gave me an apparatus to breath into, and connect to my laptop, and software that would measure my CO2 levels as I breathed.

The exercise was very simple, it was all about slowing and deepening my breathing. What you do is slow your breathing so you are breathing six times a minute, in other words ten seconds per full in-and-out breath. In for four seconds, Out for six.

The idea is to build up a rhythm, and to keep it going. It wasn't easy at first, but it got easier. I started at five minutes a day, and built up to twenty, and could gradually see on the screen my CO2 levels rising.

This was early last year. I was doing ok, with mask and breathing exercises, increasing activity, living a life. Then in March I had a car crash, and in May had a relapse of sorts after a stomach bug. So for a period of four or five months I really struggled.

And somehow I gave up the breathing exercises. I had a month or so of feeling really unwell during the summer, and if felt like a lot of work for something I wasn't even sure was having any positive effect. Eventually I pulled out of the relapse, but found, in the autumn, that I was still struggling, that my energy was mediocre, and I was having intermittent chest problems, wheezing and coughing.

It took me until December to figure out that I needed to start the breathing exercises again. I had given the apparatus back to my "breathing expert", so I had no way of measuring what my CO2 levels were, but this didn't matter. It was just about timing. I went to the stopwatch on my phone and timed my breaths. In four seconds, Out for six. The lungs are supposed to be emptied fully on the out-breath, and then the In should be smooth and un-forced.

I immediately felt better. Even on just a couple of minutes a day, to start off with. Eventually I built it up to fifteen minutes of breathing exercises a day, and slowly began to regain the activity level I had reached before my accident last March. My chest problems cleared up pretty much within two weeks, and my energy became much more solid and resilient.

It is another lesson to me, if one were needed, of the vital role that simple chemicals play, at least for me, in the central nervous system. In slowing and deepening your breathing you increase the amount of carbon dioxide you inhale and retain in your system.

The exercises also train you not to "over-breathe", which is the key term in techniques like the Buteyko method. Buteyko is a therapy for asthma, but it is also put forward for CFS, though I did a course on it about ten years ago and didn't feel any benefit. Over-breathing means breathing too fast and too shallowly, which in turn increases anxiety and makes you over-breathe even more.

And so the trials that people with ME/CFS often go through because of their illness can throw the autonomic nervous system off even more than it already is, worsen breathing and so set up a vicious cycle, reducing CO2 and O2 and reducing energy, increasing anxiety, worsening breathing...etc.

Certainly for me the autonomic nervous system (ANS) seems to be key, I have mentioned that before. And breathing is a key area of the ANS, and effects how the body works in many ways. CO2 and O2 levels are vital for me in trying to stay at least semi-healthy and semi-active.

In fact they are so vital I am considering getting an oxygen concentrator. This is a machine that increases the concentration of oxygen in the air, allows you to breath it in through a cannula in your nose, thus increasing your O2 levels. I want to spend a month or so with the breathing, and the mask working together, see how far I can get and then reassess.

It is so rare to find any kind of answer in the battle against ME/CFS. And at least for me, the oxygen and carbon dioxide question is a key one in my attempts to inch back to normality. I know Dr Paul Cheney, an ME/CFS doctor in the States, prescribes a rebreather mask and O2 at the same time to his patients, and this seems to have a good effect. 

The breathing exercises would be something I would try, if I were in a situation where I was frustrated and had come to an impasse with my health. It would take a month or two to notice a difference, I would say, but it may be worth a try, all you need is an accurate stopwatch, something that is on most phones now. It is free, and can be done at any time. It can be surprisingly difficult initially to hold a breath for four seconds in, and six out, but it does get easier quite quickly. If four in and six out feels too hard at first, it would be possible to begin with three seconds in and five out, and build up.

I can't believe that if it has helped me, that there aren't others out there that it could help too. 

CRASH

I have used the word "crash" in the past, both here on my blog and in real life, to mean an experience that any of us with ME will be familiar with.

A crash, in ME-World, is a period of time when we have done too much, or have had an overload of stress, or when we have been hit by allergy or infection. It is a shutting down of our normally functioning systems, and results in exhaustion, pain, sleeplessness, anxiety, illness.

A crash is a period of time when things come to a halt, when normal life is stopped. Many of us experience ME/CFS, at the outset, as a crash or series of crashes, where we move from functioning to malfunctioning. It can often be a quick process for many people, a real 'crash'.

Last week I had a 'crash' in two senses of the word. I was driving down a country road, somewhere that was not too narrow or rough, at about the speed limit, or a little above, when I turned a corner and realised that the road surface was covered in hail. There hadn't been any hailstones where I had just come from, but obviously in this section of the road there had been a localised hail shower.

It took me by surprise, I braked to slow down, skidded, lost control and flew into the ditch at one hundred kilometres (sixty miles) an hour. My car ploughed through a wire fence and turned on its side.

Inside it, I was dazed and shocked. I remember thinking, "is this really happening?" Kind of a stupid question, but it was a very surreal experience, to have lost control and turned on my side in my car, to have ended up in a field in the Irish countryside.

I cursed, and groaned, and cursed some more. I didn't realise at the time how lucky I had been, I was just angry at the bizarre turn of events. I had been driving for sixteen years, and had never had a real accident. I didn't know how to react.

I am very short-sighted and need glasses to see any thing well, and these flew off in the crash. I scrabbled around for them in the tilted car, without success, and finally decided to try and get out. I managed to open the driver's door vertically and get out that way, as if it were a hatch on a submarine.

By this time other cars had stopped. People helped me, I was dazed and didn't really know what was happening. I sat in someone's car, still trying to understand what had happened. An ambulance was called, and the fire brigade, and the police.

The police arrived, I described the accident, I was taken to the ambulance, and a fireman found my glasses for me, which was an enormous relief, and in fact was the thing that caused me most discomfort in those minutes after the accident. The glasses were mud caked, but in fact almost intact, amazingly. I was just glad I could see again.

In the ambulance, the paramedic gave me the choice of going to hospital or not. He said that the procedure was, if the car turned over, to take occupants to the hospital and to strap them into a spinal board that immobilises the back and neck. Though he said that the fact that I had gotten out of the car by myself suggested that I was probably alright, and may not need to.

I chose to play it safe, so they strapped me into a board and put a collar on my neck. I was taken to hospital, and in fact was seen within thirty or so minutes. They tested my spine, which seemed to be fine, took an x-ray, and discharged me before midnight. The accident happened at about nine pm.

In fact, the whole procedure was immensely impressive, looking back on it. This was all new territory for me, and so I didn't know what was normal. But the emergency services were incredibly efficient, helpful, professional and caring. I had a life-threatening car crash at 9.15, thirty minutes from my house, and was back home about 12.30, with the all clear.

Here in Ireland there is a lot of talk in the media, in the wake of the economic difficulties, of the poor state of our public services, about things not working properly, but my experience from last Saturday night could not have been better. I also still haven't received a bill for anything.

The next day I was fragile, a bit anxious, and aching around my neck and back. I quickly realised that I wasn't able for anything, and really haven't been up to much all week. My activity levels have increased in the last few months, in the wake of improvements in my condition, but this was all wiped out this week as everything was a struggle.

So the accident has caused a second type of crash, though it is a mini one in ME terms. I had to cancel most of my classes this week, though at the beginning of the week I tried to teach some of them and quickly realised that I wasn't able to. Today, Sunday, I feel very slightly better, but still a little shaky and fragile. My back is still sore, though it is, according to my GP, probably muscular and will clear up.

The fact is, I could have died. Multiple people afterwards told me how lucky I had been. It was pointed out to me that I flew off the road exactly half way between two telephone poles. The ambulance man - I suppose to make conversation as we travelled to the hospital - told me that he had seen quite a few accidents where a car had hit a tree or pole and the driver died instantly.

This has been on my mind this week, naturally. I got out and walked away, relatively unscathed, when others would not have been so fortunate. It has shaken me. The car is a write off, so badly damaged that it is not worth repairing, and yet I have a few aches in my back that will probably fade with time.

More than one person has said to me, "someone up there must be looking out for you," which is a natural thing to say in the situation. Though I don't see it that way, all I can think of - in a connection to my previous post actually - is that many others have not been so fortunate, many others have died in the same circumstances. Where was the "someone" for them? Why was no-one looking out for them?

The truth is that my fate in getting out alive from the crash has no greater significance, is not part of some plan, is not down to "someone" looking out for me. I am not special. It is simple, dumb luck, a random event that happened to work out for me. Many have not been so fortunate, not because "someone" wasn't looking out for them, but simply because they had rotten luck and crashed in the wrong place.

Still, it is important to recognise my good fortune, to be grateful for it, and to learn from the experience, I believe. To recognise the value of simply being able to walk around and continuing to be mobile and independent, something that would not have been true if I had been paralysed, as many other people in my situation have been.

It is also true that I need to learn to be more vigilant on the road. I have been driving for sixteen years, and that was my first accident, but it is true that there are times when I am not as careful as I should be, possibly with a false sense of security after so many years of accident free driving. I am not reckless, but I could do with being more patient.

It is also indicative, seeing how bad I felt this week, that the autonomic nervous system is key to my CFS/ME. During a trauma like the one that I experienced, the body goes into flight or fight mode, engages the sympathetic nervous system, floods the system with adrenaline. This happened on an extreme, intense scale in the space of a couple of seconds last Saturday, and so had a lasting effect for seven days now, as my body has attempted to get over the shock.

This is purely the ANS trying to regulate itself, and this takes time. It is a lesson in itself. Luckily, I know my body at this stage, and knew when to take time off work, and knew to reduce my activity. I have heard of people developing CFS after car crashes, and this is no surprise, a trauma can unbalance anyone in a situation like this and, if they don't give themselves time to get over it, the ANS can become chronically imbalanced, the sympathetic nervous system permanently engaged.

My anxiety, which was heavy and intense at the beginning of the week, has slowly dissipated as I have rested and tried to relax. I am unable to say yet if this near-death experience will change anything in my life or not. I do know, though, that it is not something I will forget in a hurry.

DSYAUTONOMIA, THE AUTONOMIC NERVOUS SYSTEM AND ME/CFS

The question of the fundamental cause of  ME/CFS is an intriguing one. It's one that I find fascinating, mostly because it effects me personally, but also as it is something that medicine largely seems to have no answer for. It's like a puzzle, an intellectual challenge. I am only surprised that more scientists haven't shown more of an interest in working out the enigma.

From what we know, and from our experience, the immune system certainly seems to be implicated, but in my own case my symptoms appear to be more closely tied to dysautonomia. Dysautonomia is simply a malfunction of the autonomic nervous system, and something that most people with ME/CFS have, in one form or another.

The next question, of course, is What is the autonomic nervous system? The autonomic nervous system (ANS) is the system in our bodies that controls anything that is not conscious on our part. This includes heart rate, blood pressure, digestion, saliva production, breathing, sweating and temperature control. It's what happens automatically when we're doing something else. It's supposed to run like clockwork.

Most people with ME will recognise the above list, as they are all areas people suffer with. Personally I have problems - like most PWME - with regulation of blood pressure, I can't stand for long periods and feel drained if I have to, and being upright at all can be tiring.

I don't really sweat, even in my sauna at 50 degrees Celsius, I have had problems regulating temperature, I have low saliva production, some digestion problems, sometimes a tight chest, and a heart that occasionally pounds or beats too fast. This is all related to the autonomic nervous system.

I recently discovered the website of a group called Dysautonomia International, which represents people from a wide range of conditions that all suffer from elements of this problem with the nervous system. It makes reference to POTS (Postural Orthostatic Tachycardia Syndrome), which a lot of people with CFS/ME experience, as  a difficulty staying upright or standing, and a tendency to faint.

There is a certain amount of research being done on this area among scientists, and I know that in Breakspear, the clinic just outside London that I am attending, they put quite a lot of emphasis on treating the autonomic nervous system.

They do what they call an Baseline Autonomic Index. To do this they attach sensors to the chest, stomach and heart, and clips on the fingers to measure the blood gases, and also put a band around the chest. And they measure heart rate and pulse, as well as the levels of oxygen (O2) and carbon dioxide (CO2) in the blood, blood pressure and breaths per minute.

Also part of the test is a challenge to the central nervous system. In my case the doctor asked me to take six very deep breaths, one after another. Even though I was lying down I felt quite light headed quite quickly. This, he said, was due to a lack of CO2, which he could measure from the sensors. To counter this he gave me a rebreathing mask, which I have written about before.

The mask is worn basically to correct the lack of CO2 in the body. This in turn is supposed to help the levels of O2, which are necessary for producing energy in each cell in the body.

Another one of the therapies that I have been looking at recently is called Somatic Experience therapy. A friend of mine - also with ME - has had good results from it, she says. It aims to engage the parasympathetic nervous system (PNS) - the so-called "Rest and digest" part of the nervous system - and to turn down the sympathetic nervous system (SNS) which manages the "fight or flight" impulse. The difference can be seen here. The SNS is for emergency situations, though what happens in CFS sometimes, is that people get stuck in the "fight or flight" mode long term, thus causing many of the symptoms common to dysautonomia and also to ME.

It is something I may try in the future. Another thing on my list is H.O.T. This stands for Home Orthostatic Training. It was developed, as far as I know, by Professor Julia Newton, in Newcastle University, who has done a lot of work in this area.

The training is quite simple. The patient stands against a wall, with their feet 15cm from the bottom of the wall, and their head leaning against the wall. This creates a kind of tilt. The idea is to do this for thirty minutes, though the vast majority of people with ME will have to build up to this period of time slowly. I can imagine starting at 30 seconds, and increasing from there.

It is important to say that for people with ME/CFS - and especially for those who are more effected - this may not be possible, and may induce a faint, so should only be done with caution and probably with someone else there. They also advise that you discuss this with your doctor, and also have cushions around you in case you do pass out.

The general idea of HOT is to retrain the body to tolerate being upright, standing, maintaining blood pressure. I have actually been in touch with Professor Newton, I emailed her and she kindly responded within a few days. She says that for those who can tolerate the therapy, they have got good results with improvement in energy and greater tolerance of being upright. There is info on a preliminary study here. 

Again we can see that it is about retraining or resetting the autonomic nervous system. It is about correcting what has gone out of balance, getting the ANS to behave as it should.

This is the key, I think, resetting the autonomic nervous system. This is what these  therapies do, and what I feel I really need. It makes me think of my laptop, which at times begins to malfunction. Processes like opening a file or playing a video, that are normally almost instantaneous, become slow and sluggish. The connection to the internet drops, or it refuses to sleep when I close the top, or it doesn't recognise my printer when I connect it.

Whenever this happens, my first instinct is, naturally, to reboot it. Turn it off and turn it on again. Invariably, this simple action improves or resolves the problem. More often than not my laptop is working perfectly again after a chance to reset itself and start again, its central nervous system now in synch.

And that's what I wish someone could do for me, I feel that I need to be rebooted. I need to be switched off, and then switched back on again, to be able to reset. I feel profoundly out of synch, out of rhythm, unbalanced. I am sleepy during the day and sometimes can't sleep at night, my energy runs out way way before it should do, I can stand for a few minutes but then feel the blood draining from my head and brain, and lose basic functionality. I am stuck in this malfunctioning rhythm where things just don't quite work as they should, and where everything is slow and sluggish and out of phase.

And all of these approaches, the rebreathing mask, SE therapy and HOT - as well, no doubt, as many others - seek to help this rebooting process. They may or may not work for me, though I intend to try them all, but somewhere here I am convinced is a key to what has gone so wrong with my autonomic nervous system.

There is a running joke from the British Channel 4 sit-com, The IT

Crowd, about the slightly dysfunctional IT department in a London company. Any time anyone rings them up reporting problems with their computer they get the same reply from the techs there - "Have you tried turning it off and turning it back on again?" This is the full extent of their expertise. I just wish I could turn myself off, and then back on again, and see what happens. 

BREAKSPEAR 3: LIVE AND IN PERSON

 I travelled over to Hemel Hempstead this week, where the Breakspear clinic is based. Hemel is a small town about thirty minutes outside London, and the clinic is not far from the centre. I have already blogged about this clinic, here, and here.

Up until now I have had two consultations with Dr Jean Munro, but both have been by Skype, as I live in Ireland. I went over to England this week as Dr Munro said that she needed to examine me before prescribing me medication.

One thing I have found with Breakspear is that their appointments are quite punctual, the first appointments I think I have ever had with a doctor that have started on time. Dr Munro gave me a general examination, BP (which she said was low, 100/70), reflexes, eye, mouth, balance, breathing etc.

We then went on to discuss the treatment options. She prescribed for me an anti-viral, Artesunate, and an immuno-modulator, Immunovir, as there is evidence of Herpes 6 virus in my system. The clinic itself provides the medication, though it is expensive. The Artesunate costs £96 per month, and the Immunovir £227 a month, which comes to close to €370 a month for me.

She then brought up allergy testing again, which she mentions every time I talk to her, as well as Low Dose Immunotherapy, for my food intolerances. As always, I told her that that was not my priority, though she does really seem intent on pushing this treatment.

We then discussed the Far Infra Red sauna that they use for detoxification. They combine this with infusions of vitamins and glutathione, and it can be done every day for a week. I was quoted, for a week's treatment, over £2000, so I told her that I was putting this on the back burner for a while until I can see if I can afford it.

What I didn't tell her is that I have since bought myself a personal Far Infra Red sauna, a cocoon system from Get-Fitt.com. The idea behind this is that your body is heated at a deep level, you sweat and your metabolism is sped up in order to aid detoxification. I have written about the importance of having control here before, and having my own sauna gives me exactly that. I have control over when and where and for how long I have a sauna session. I can start off slow, as I have done with two minutes at 30 degrees, and build up gradually. Over a period of months I can slowly increase to 40 and then maybe 50 degrees, for fifteen, twenty, thirty minutes.

In Breakspear it would be very different. To make the trip worthwhile I would start immediately at at least half an hour and at a high temperature. I doubt if my body would react very well to that. So with my own sauna I can have the gradual increase that in the clinic would be impossible. I will blog more about the sauna in the coming weeks as I increase both time and temperature.

The final topic that myself and Dr Munro spoke about was one we had broached before. This was the idea of having a Baseline Autonomic Index done. I had rejected this idea before, as I thought I had enough to be concentrating on, but they said that they could fit me in the day I was there to have it done, so I thought I would go ahead.

The Autonomic Index is something that Dr Peter Julu has invented to give an overview of the workings of your autonomic nervous system, something that people with ME/CFS generally have great problems with. The autonomic nervous system involves blood pressure regulation, breathing, heart rate, perspiration.

I had the test done later that day. It is relatively painless, I lay in a prone position and had sensors attached to my torso and fingers and near my heart, and other measurers of my breathing and pulse. 

The most interesting part for me was when the doctor (another one, not Dr Munro) gave me a small challenge, and told me to breathe in and then out deeply six times in quick succession. Even though I was lying prone, I felt light-headed quite quickly. The doctor was measuring the oxygen and carbon dioxide levels, and saw something interesting.

What is supposed to happen is that when you do exercise or exertion, your oxygen levels should go up while you are exerting yourself. Then they should return quickly to normal. During the deep breathing my oxygen levels actually dropped.

More than that, my carbon dioxide levels dipped during the deep breathing, as they are supposed to do, though they took a long time to come back to normal, much longer than they should.

The doctor described this as a "double whammy", lack of both oxygen and CO2, which makes energy production extremely difficult, and goes a long way to explaining my lack of stamina. This is a common result in patients with CFS.

More importantly though, what can be done about it? Well, the results have to be compiled and assessed, and then a treatment programme can be suggested. The doctor wasn't very forthcoming on what that might be, but some people, he said, actually get an oxygen mask to breathe, to increase the levels of oxygen. He seemed to think that the situation is treatable, though that remains to be seen.

So at least I have things to be working on. I am going to continue with my own private sauna, building up gradually, and also begin the anti-viral medication. And then hopefully there is an accessible, affordable treatment option that comes out of the autonomic test.

And I can't help thinking about what I might gain from all of this. I wish I could stop thinking this way, but it is impossible. I am spending all of this money, going through all of this effort, throwing everything I have this summer at trying to make some progress in my health and energy levels. Something has to work, right? Just give me 5 or 10 percent, just something.

After all of this, if I am here in, say, December, writing about how nothing has changed, that all of the therapies have failed, that will be a very bitter pill to swallow.