I’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?
Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.
Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.
Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.
My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.
My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.
I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine I could do with -lowers BP – I am not getting!
It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.
If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.
Overall I think, so far so goodish.
READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)
Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.
A lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!
Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.
On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.
I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.
inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh
ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)
Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr
oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie. I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible
and didn’t really help the pain that much either.
One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.
One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!
The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.
The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.
Over the Counter stuff: I take CoQ10 and Magnesium. A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM
Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.
Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.
Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)
Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!
While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.
ME/cfs awareness month ends tomorrow. But the disease goes on.
Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!
The vid maker and a discussion of the vid is found HERE at DINET
I am still awaiting tests for hyperPOTS to go with the IST. As I’m already on Ivabradine I guess there’s no rush.
Today is the last day of ME/cfs Awareness month. I’m posting the introduction video for the documentary “Voices from the Shadows” that tries to give a voice and raise awareness for those with Severe ME. Please pray for those at this end of the disease and for all of us who are heading that way with some serious trepidation. The Intro is less than 5 minutes. Watch and pray.
If you know someone with ME please take the time to watch this. Don’t listen to the MSM. They have no idea.
Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus, and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.
Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma. Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.
The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.
This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.
I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency. I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.
I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!
The call for the Canadian and International criteria to be made the criteria for the disease goes on. It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.
Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net. When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection. So drug juggling becomes a way of life.
Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying vision there is a danger of accidents.
So organise the meds. Make sure you know what you are taking, how much and when. You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!” My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.
So I have bought a makeup box. Don’t laugh – this is something you can carry around without
it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.
Knowing you can just take what you need even with the worst possible brain fog is good.
Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds and the little top boxes will hold (in this case) six nights worth of meds.
The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too. This will make things a lot easier if you get shipped off to hospital. The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.
Side Effects
Another quote from the redoubtable Dr. Osler
One of the first duties of the physician is to educate the masses not to take medicine.”
We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day! This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.
Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.
Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?
Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.
You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.
Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.
Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.
Psalm 88 comes up often at Compline in which the psalmist faces his ill health and gives God a bit of telling off. One line stands out as, because of how sick he is he says, “You have taken my friends away from me, and made me repulsive in their sight. I am confined and cannot escape.” (Ps 88:8).
Go to any place on the internet where people speak of their experiences of serious chronic illness – especially not so well understood ones like fibromyalgia, ME (cfs) or dysautonomic disease like PoTs, IST and all the rest that goes with them, and you’ll see the same stories over and over. So many people tell of how friends and family not only abandoned them, but actually humiliated them over how sick they were.
The most common idiot thing to say is “But you don’t look sick.” WHAT does sick have to look like? I mean, most of us exhibit all sorts of weird “sick” signs. Perhaps the fact that I twitch and jerk randomly, have colour changing body parts; have lost the skill to both move and breathe at the same time, and of course there’s the in-yer-eejit-face wheelchair, has prevented most daft comments (Doctors are another species so I don’t count the bizarre and inhuman things they say).
Story after story in which the person struggling with the disease that has stripped so much of their life away, has to face being rejected, taunted and ridiculed by their own family and friends. What on earth is going on?
Many people lay the blame at the feet of doctors who have been rude and dismissive; which should be a matter of deep shame to medics, but isn’t. Family members still stuck in the idea that “doctor knows best” then feel permission has been given to behave in the same way and so the nastiness spreads. Then there’s the ability to wiggle off the hook of having to love and care for another person. I am sure not wanting to feel responsible makes a lot of people cruel.
Having a chronic disease is a bloomin’difficult business. It’s bad enough when support isn’t there when it’s needed, but to be actively abused for being ill has got to be the worst possible experience. THIS BLOG POST sums up what it’s been like for way too many people. Research from a couple of years ago shows that one in ten suicides are because of chronic illness – but read any post by someone feeling suicidal with chronic illness and almost always it’s nothing to do with how sick they are, but how others are treating them.
I am so grateful that I haven’t been through the level of rejection and stupid behaviour that so many others out there speak of. I’ve lost a couple of fair weather friends and family, but most people have been fine with me and very supportive.
I am quite sure plenty of people in my life have no idea, or only a vague notion, what chronic illness does to me, but I don’t mind that. Why should they have to understand it? But no one has been cruel or unkind to me, thank God.
Ten years into this hideous set of illnesses I’d be very tempted to use rude words in response to someone who tried to pour salt on my wounds.
My oldest children have been brilliant right from the beginning of this. They’ve had to contend with a lot from me and deal with their younger sister being extremely ill for the first three years of her life too.
I am very grateful that I have good Christian people around me who have a good Christian attitude to life.
So to all you friends and family who have never said “But you don’t look sick” or “You should try and get out more,” or “Have you heard of so-n-so the brave cripple..” or “have you tried this miracle cure?” or whatever other useless, unhelpful thing, I just want to say THANK YOU.
May is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible. The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.
The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.
But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).
Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.
But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.
A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.
Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.
Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.
Theres good research into methylation and some into endrochronological aspects of our disease.
A lot of time and money has been lost (stolen even) but we can work together and make up for all of that. It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.
People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.
Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.
I heard a doctor of some description on the radio say that the reason so many people have diseases like Fibromyalgia and ME/cfs is because we are angry and unforgiving people. He didn’t back his extraordinary claim with any research, but he put it out there as if it went without saying. When asked if something like scholiosis could be caused in the same way, he didn’t think so; but didn’t explain why.
What I will call neofreudianism is causing a great deal of damage in the care of people with all kinds of chronic illness. it’s psychobabble with no empirical scientific value at all; but much loved in political circles. It is simply unethical and has caused terrible damage to the proper funding of research and the proper care of patients with these diseases. Patients are being denied tests and treatment as well as facing shockingly poor behaviour from medics and it all seems to be hooked on the politically motivated approach to trying to undermine the seriousness and reality of the diseases. It’s only relatively recently that the CDC have admitted that ME is a serious life threatening, life shortening disease.
There is, thank God, a growing body of research that shows the biological roots of FMS and ME and some excellent work on comorbidities. We are seeing FMS more tightly linked with autonomic dysfunction and adrenal dysfunction. Most of us have at least one dysautonomic dx such as some form of POTS and/or IST with other orthostatic disorders.
ME patients are shown to have all sorts of nasty viruses as well as MAST Cell, EDS and Mitochondrial disorders.
There is a growing number of us being dx with Lupus, Lymes and other serious disorders to go along with the already hideous problems we face.
Despite all this, most of the people I know with FMS/ME/POTS/etc etc. are happy, well balanced and forgiving people. The fact is many many of us have faced the need to forgive (mainly neurologists) since becoming ill. The anger, resentment and sadness I’ve seen expressed as come as a RESULT of being so ill and the horrible behaviour of others towards us just because we’re ill. I don’t know anyone who became ill because they were angry with someone.
I do know someone who carries a lot of anger and isolation who has scholiosis. I don’t for a minute assume her illness was caused by her anger. There is no evidence to support such an idea.
It is bad enough being chronically ill, coupled with a shocking lack of well funded honest research, without having someone who patently knows nothing about the illnesses spouting misinformation on the radio.
How could FMS or ME be a result of anger and unforgiveness when it occurs in clusters. More nurses get it on average – are we a more angry bunch? It’s ridiculous to try and tar us with this brush.
I have emailed Catholic Answers and asked for a retraction on air. I hope they do this. I do love Catholic Answers; it’s a well put together and usually very honest and accurate program. This is a one off hopefully and one that I pray wont be repeated.
It is not because we are a bunch of angry unforgiving grudge bearers that we are so ill. We just have a disease, like other sick people. We should be treated with the same respect.
A few things have happened this last week or so that have conspired to make me stand back and realise that it is time I stopped annoying my children. (Well, perhaps not completely…but…)
The first two things that happened were my oldest daughter went to stay with a friend for a couple of days and a friend of mine was writing an essay on the subject of “Loss” as part of her NCT training.
Iona, going away for a couple of days in no way bothered me at all. As a mother, knowing where my daughter is/was I was relaxed. It didn’t occur to me that the same wasn’t true of her. Meanwhile my friend’s battle with her personal fears about losing a child, or anyone she loves, particularly if it was sudden, as she wrote her essay had also surprised me. I hadn’t known she struggled with this fear. I don’t think this is an irrational fear, a lot of people go through it and often, as in my friend’s case, it is rooted in a soul wrenching event from the past. Taking the opportunity to face it through the essay showed real courage. Most people – especially British people I think- prefer to duck these issues.
So, why did these two things conspire to make me think about my own behaviour?
Well, Iona came home with her friend and I was sitting there unable to breathe. I’d had the day to myself as Heleyna’s godmother had taken the children shopping and brought them home with lots of new clothes. I had decided to use the quiet to have a shower, only I couldn’t make it upstairs, so I gave up.
I had already been to the doc as an emergency a few days before and had been booked in forrenal and cardio bloods in another three days so I got it into my head that I could hold out to then and see a doc when I went for bloods. Yes, I was being utterly irrational. I had allowed my hatred of going to the doctors to over-ride any good sense I might have.
My daughter was cross. She put her foot down and organised me another emergency appt. She called the taxi and asked her friend to stay with the children.
Off we went. Then she had to arrange for my son and daughter-in-law to take over from her friend while she stayed with me at the docs as I was on the nebuliser. To be honest, I felt so ill, but I was squirming with embarrassment that Alex and Anna had to come over for the children. Why? I have no idea. It’s not like they would resent having to help out.
But this is one of the reasons I try and avoid doctors. I have to struggle with a taxi and alarmed drivers who prefer their fares to be breathing properly it seems, and someone has to be there to take care of the younger ones. It might not seem like much; but when you are very ill and have brain=fog to boot, it feels like a massive legistical nightmare.
Iona then said something, that right then, I didn’t really appreciate. She said she knew she would face a problem when she got home because I was just finishing the steroids before she left and they weren’t helping. A while later I realised, that instead of having a great, relaxed time with her friend, she was thinking about what she would face from her recalcitrant sicko mother when she got home.
And then it occured to me that the reason it hits the fan so often is because I keep thinking I don’t need to go to the doctor. And the reason I keep thinking that is because I HATE going, not because I genuinely think I don’t need to go.
There are many and varied reasons why I try to avoid doctors, but this is still no excuse for putting my children through it, just because I can be a stubborn cuss. So my Spring resolution is that I will attend medical appointments when I need to rather than wait so long I have to be shipped in as an emergency. I will do this. Honestly…no, honestly I will.
I had a few spoons and now I don’t seem to be able to find them. Perhaps they are under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.
If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.
I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.
My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually. It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.
I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.
Since the meds adjustment (candesarten) my blood pressure is under better control. My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.
The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well
I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.
Bloods taken to check for renal and heart failure. I intend to ask for ANAs to be done soon.
Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.
I started on Ivabradine just over a month ago with a slow start of 2.5mg bd (twice a day) and have now increased to the 5mg bd. Is it working? Well, it’s doing something, that’s for sure. But I’m a bit surprised it isn’t doing as much as I expected.
The top red band shows a POTS tacky level ie. above 120 and you can see I don’t often get there now. This is good. However, I do seem to have more bouts of sitting still severe palps over 130 in the evening or in bed at night (not on chart) Nevertheless overall I think my heart rate is down. I’ve even had a few in the 70s. Very nice.
No obvious side effects so far which is good. My breathing is rubbish and I did come off the Ivabradine for a few days to see if it was the culprit but nothing changed other than my HR going up. Having seen the GP I’m back on the Ivabradine and putting up with the breathlessness which a dose of steroids hasn’t helped. Weird, because they usually do.
I have been surprised at the lack of real impact on my resting pulse. It’s down from 110 on average to around 97 but it’s often 100 or over 100 still. So the real impact has been on my upright heart rate which is so much better. I assume the Prof will increase the dose when I get to see him (I think the usual dose is 7.5mg bd).
The GP has adjusted my Candesarten 4mg and 8mg from just 8mg. My BP remains as fluctuating as ever. It’s sometimes great and sometimes high even when I’m sitting still. Moving around sends it upwards very sharply along with sudden drops. Not nice at all. I still think this is orthostatic in nature.
The numbers at the bottom, in purple, are my pulse pressure. As you see it’s rarely in the green. It is generally too high and too often it’s way too high.
I am glad the GP took seriously my report of a TIA last month (about 6 weeks ago) as fluctuating BP along with such high numbers on pp are a bit concerning. Strangely research so far shows that people over 60 can safely cope with PPs as high as 70 but people under 50 don’t do so well. The research is extremely thin on the ground.
I am awaiting bloods and of course the wait for standing norepinephrine and dopamine levels. I really want those done because I am still thinking along hyper or comboPOTS lines, especially as my BP is so high when I stand up. I am assuming the bloods I’m having taken next week will cover things like full blood count, cardiac enzyme and BNP but I’ll have to ask when I get there.
I also think I might want to get ANAs done in case of Lupus now that I am the less than proud owner of a malar rash. (butterfly rash). It comes and goes and ranges in colour from purple to bright red. As the tests for Lupus are notoriously unreliable I am unsure whether to bother asking for them now. It would only be useful if there was a proper treatment – and I am not so sure there is.
Multicoloured bodily features are continues with red knees and blue feet in the mornings. All very Dulux of me I think. Also keep having Oxygen SaTs below 93 sometimes hovering around 90-91. No wonder I feel a bit off.
Wish it was all simple. But on the other hand, it’s like a detective story sorting through all the clues; even if it is unfortunate that it’s my body doing this.
Anyone who has read my blog over time will know I have an overall, pretty low opinion of doctors (especially neurologists) but there are some good ones out there. My GP is a very good doctor and I respect him a lot for that.
Even so I avoid going even to him if I can avoid it. I phoned for an appointment before Easter and was told there were none until mid april unless it was an emergency and so I didn’t go. Yesterday, I went because by that point I really had to.
The oncall doc was one of the regulars at the group practice I attend. I’ve only met her a couple of times when she tried to help sort out some post c-section problems I had after Heleyna was born.
She didn’t keep me waiting but came out as soon as she had finished with her patient and took me straight through to the nebuliser room. She asked me first what I thought was happening and whether I thought I had an infection. I told her no infection and no full on asthma attack as it was mostly URT wheezing and breathlessness. She had a listen and agreed with me.
She plugged up the machine and left me to it.
I was really taken with the fact she trusted me to know what my own body was up to.
Afterwards she took us through to her room and allowed me time to recover and talk to her. It was because she was allowing the breathless-voicless middle aged biddy to speak that I felt able to tell her the whole truth; first that I’d taken myself off the Ivabradine to see if it was a side effect – but nothing changed so I assume it isn’t the Ivabradine. And that I’d had a nasty TIA last month and I showed her the rather startling BP/HR/pulse pressure chart.
Then she was cross with me. I hadn’t made an appt after the TIA (to be honest, although I didn’t tell her this – I just didn’t feel well enough to go) She looked at my nice neat print out and asked what I’d done about a reading of 175/150 and I had to admit I hadn’t done anything.
Now then, she could have given me a right lecture, but she didn’t. She was cross with me, but respectfully and anyway, I knew she was right. She demanded to know why I hadn’t raised this with the Prof Cardio. But he was in a rush, so although I had taken the chart in with me I didn’t get the chance to ask him about it.
She’s raised the Candasarten by 4 mg to try and drop the diastolic without dropping the systolic too far. I have to go back in two weeks for bloods. I hope they will do B-type Natriuretic peptide (BNP) but I’ll ask when I get there. (I’d like ANA done as well but one thing at a time)
Ooh and she gave me steroids which always make me feel so much better. I wish i could have them all the time – only of course I can’t because of their nasty side effects. But oh, while they last they are so good.
And I’m back on the Ivabradine for the inappropriate sinus tachy.
Thanks to my breathlessness and voice problems it can be difficult to get things said quickly. It is so important for a doctor to be willing to give you the chance to speak, even if it does take a little longer.
I do think having a “proof” helps as well. So if you can do take BP charts or photographs of rashes and weirdness.I am using iLOWER BP which is free and easy to use. It also records pulse pressure which is important, although it’s a rare doctor that actually knows this. You might also find the ABCD score useful if you’ve had a TIA.
I even have that horrible neuro wanting a film of my next seizure. The neater and clearer the information the better as it looks like you’ve done it properly.
Couple of things to note for stroke risk; fluctuating BP is more indicative of risk than constant hypertension. A pulse pressure of between 60 to 70 isn’t good but it isn’t too bad if you are over 60. Research on people in their 40s to 50s however suggests that a high pulse pressure is indicative of stroke risk.
Low pulse pressure (less than 10 to 20) is indicative of low blood volume.
I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.
There should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.
Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.
There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.
A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with. The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.
Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor. As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them. She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.
Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.
She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.
I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.
WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.
The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label. While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?
There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much spite.
And of course lies.
Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.
When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.
Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do. No one deserves to be lied to about how their chronic illness is going to go.
Went off to see the Prof yesterday. I did have a list of questions but didn’t get to ask any of them this time. However, he is going to see me in two months so I am hoping I can ask some questions then.
He has decided it isn’t POTS but is Inappropriate Sinus Tachycardia (IST). I’m sorry but the word “inappropriate” always makes me think of polite people saying someone else has been naughty – so I have a naughty heart.(David Goldstein in his book Adrenaline and the Inner World sees IST as part of the POTS family anyway cf. p 203)
Interestingly the Prof thinks if I had POTS my pulse would frequently go over 126 and for the 24 hr ECG it only went as high as 126. But he also commented about my high BP so I raised the question of hyperPots. I do still want this considered and norepineprine and dopamine measured if possible. (Got a nasty feeling this will entail an endocrinology appt and I can’t face yet another specialist)
I was under the impression that a standing pulse above 120 was pots but he thinks it would be much higher. The highest pulse I’ve ever recorded was 148 but it only gets that bad on truly bad days. (As far as symptoms are concerned I feel pretty yuk with a pulse at 115 and as my “resting” pulse hovers around 100 to 110 I feel yukky a lot)
So, for IST he has given me a drug called Ivabradine which I must start on low and work up. This is designed to treat angina and heart failure and should bring my tacky down. If you click on the link you’ll see it’s a recent discovery for the treatment of IST, so I’m pretty lucky because the Prof (bless’im) has obviously done his reading and is up to date on treatments.
He promises to keep at it with me ’til we crack this thing. I have to admit the lead up to the appointment I was getting nervous – which normally I don’t. But I so very much wanted him to be able to help me and I was afraid I was going to face one big “no show”.
Doctors always think that when results come back “clear” or worse still “inconclusive” that we should be so happy about it. But really patients who are very ill don’t want results showing nothing – they want an answer and a treatment. Having a doc saying “Your ECG showed…whatever” and follows this up with “And here’s a drug/treatment that might help” are like little oasis in the long desert of chronic illness.
There’s still a number of things to work at; my BP for one and the astonishingly wacky pulse pressures I get; sometimes as low as 10 but often as high as 60 to 70.
I seriously believe – though I might be wrong – that if I can get a HR of less than 90 and a BP that is stable, even if it’s a bit high, I would feel so much better. I know this won’t be an overall cure, especially if I do have ME as dx but it has to be a start in the right direction – which after 10 years is a relief.
A friend recently told me that his fellow medics tell him about patients with fibromyalgia coming to them and “whingeing” about their symptoms. Thankfully I was just in crash post-wedding so I didn’t immediately tell him what I thought of his fellow medics but I did say I was more than aware that a dx of FMS got me immediately treated like … I used a rude word for poo. His response was that the doctors didn’t know what to do about fibro – it’s difficult to deal with.
If I had been more with it at the time I might have given him a message for his colleagues; poor didums don’t know what to do with a very sick patient who comes to them because after all they are supposed to be DOCTORS trained in medicine and very well paid for it. Understandably the sick person would like some help. Doctors need to grow up and start taking seriously the responsibility of being a doctor, or go and find a job they can do, like cleaning the streets or something where they can’t do any more damage. They will never be any good at being a doctor if they spend all their time soaked in their own narcissism with the delusion that the only important person in the room is them.
The major problem in medicine these days is that it is seen as a prestigious career for ever-s0-clever people, rather than a vocation to help the sick. People who spend all their time being told how clever they are do not like to face seriously complicated diseases like fibro, ME or any dysautonomic disease. It’s too difficult, involves focusing away from the doctor and onto the patient and does not lend itself to a tick box on a computer.
Treating patients with respect costs nothing and could save a life or two – or at the very least make someone’s life a little more bearable. I think the knock-on effect of patients being treated like persons with intrinsic dignity would be that doctors could cope with failure better and have more job satisfaction.
There is something so wrong in our culture when doctors not only treat patients so appallingly behind closed doors; but have no sense of irony is complaining publicly about how annoying really seriously ill people are when they come for help.
Looking at the state of medicine – and it’s not just in the UK, the same horror stories are told by people all over the Western world – is we have ditched God and with Him we have ditched the natural law and the recognition of personhood with it’s intrinsic dignity and intrinsic rights.
One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.
Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.
Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.
My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish. The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.
I had a whole list of bizarre and unheard of words for a watering can.
I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.
Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!
I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.
While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.
I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating. But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.
I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true. Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.
And remember, you’re not alone in blurble-flurble-dingbat-undermender.
I am posting this here for those of you who are interested. I know, more or less, how it went down and I just can’t face watching the thing. I have huge respect for The Countess of Mar and wish more people were like her.
I am particularly disgusted (but not surprised) at Robert Winston’s response. He obviously hadn’t a clue and hadn’t bothered to listen either. I believe he’s in the eugenicist camp anyway, so he wouldn’t much care about lesser being like ME patients. Once killing disabled unborm children is ok, there’s little left ethically really.
Overall the standard of debate here was dreadful. I can’t believe the intellectual laziness and refusal to actually look at the problems with PACE.
The Business of Post Exertional Malaise. (PEM)
Post Exertional Malaise or PEM as it’s called, is such a major sign and symptom of ME it is seems it should be the primary box to tick. If you don’t have PEM, you are most unlikely to have ME. It goes hand in hand with exercise intolerance. Obviously a person who can tolerate aerobic exericse doesn’t get PEM. But there are illnesses where a person may have exercise intolerance (COPD and heart failure spring to mind) but don’t have PEM.
So how does PEM manifest itself?
It is, in essence, a state of collapse. The patient is usually in a great deal of pain that many of us describe as a bone pain. It does feel as though your bones actually ache. There’s extreme brain fog with this so that you can’t think straight at all, or express yourself. In my case I quite often can’t speak or can’t speak clearly or with proper words.
Vision and hearing can be affected. In my case I tend to loose perception and get tunnel vision and photosensitivity. I become very sound sensitive, but others loose hearing.
The worst part (IMO) is cyclical vomiting. I’ve only had this a couple of times thankfully, but it’s the most painful, exhausting, horrible thing.
One of the less horrible symptoms of PEM is the inability to stay awake. When I’m crashed badly enough I just fall asleep or semi-asleep. My body does it almost like switching off. Unfortunately this is not always the escape you might hope for. More than once I’ve dreamed I’m in a huge amount of pain.
This crash can last from a few hours to a few months. I will never forget the crash I had three years ago which lasted just over 6 months. It’s not something I want to repeat, so why those in the pyschi school want us to do so is beyond me.
When certain luvvies in the psychi industry talk about patients “fear of exercise” as though we are lazy twits who just need to work harder, they never seem to get that we KNOW what can happen because all of us have had it happen to us. Those luvvies think we should be barmy enough to choose, quite deliberately to put ourselves into crash. As this has killed a few patients (that Labour MP comes to mind) it seems like a ludicrous approach.
The increase in pain with PEM has been shown to be the muscles hanging onto lactic acid. Mitochondrial defects prevent the proper use of oxygen in the body. For those of us with lung disorders our oxygen SATs drop out quite often anyway and with the extra broken bit of mito dysfunction our bodies don’t process oxygen the way they should – and we crash.
There is a great deal of biomedical research explaining why we are so ill. If only Lord Winston and his cronies could be bothered to actually READ some of it!
I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.
After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check. Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.
I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.
POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…
So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)
I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.
So, it’s been a right game trying to get tests, let alone treatment.
Well the troops are rallying. More than one person is offering me the chance to go privately. I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!
Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.
With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).
So what is my plan of action?
I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.
I also want them to check out baraflex failure.
I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.
It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients. It would be good if there were dysautonomia specialist clinics – I can dream!
However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.
UPDATE: sadly, yet again the FDA have refused to approve Ampligen for ME patients. They are asking/demanding for Phase III trials to be done. This is massively expensive and I am unsure how Hemiphrex are going to do this; especially as there are some complications in the Hemiphrex finances apparently.
Can’t help wondering why approval can’t go ahead with “yellow slips” for this drug now it’s passed Phase II. I think there are plenty of ME patients who would be willing to risk it considering how horribly sick many people are.
There is some understandable concern that this is more smoke and mirrors and more stalling from the FDA over approving Ampligen for patients with severe ME/cfs. I don’t think I have stumbled upon a disease this serious that has so much bizarre politics surrounding it.
There is no doubt that ME is a very nasty complicated disease and there are plenty of co-morbidities to add layers of complication. Very few people with ME only have ME. Most of us have other stuff like FMS, PoTS, other dysautonomic problems. We have compromised immunity and endocrine abnormalities. I don’t really blame doctors blanching when faced with someone who has such a shambolic and system wide disease set. (I can’t see this as one disease it’s a multitudenous mass)
Of course one of the major obstacles even in America where at least there is the International consensus diagnostic criteria – which outstrips the ridiculous Oxford Criteria here in the UK – there is still no definitive narrowed judgement as to what ME/cfs actually is.
There are a number of biomarkers being put forward for the disease. The primary one would be the Post Exertional Malaise (PEM) which can be measured in muscle biopsy and VOX2 Max tests (that is oxygen consumption)
Other biomarkers are mitochondrial dysfunction and Mast Cell reactivation.
Then there’s EBV reactivation antibodies, Coxsackie virus, CMV and a whole lot more.
The rates of heart failure, kidney failure and bizarre forms of cancer are much higher in ME patients (and life expectancy is 58 as opposed to 82 in the general population and this is a massive improvement from a few years ago when heart failure and ME gave a life expectancy of 46/7.
Coupled with a quality of life that has been measured as worse than those with COPD you can see why so many patients are begging for a chance to have this drug (or any drug that might work!)
A doctor once said to me that people don’t die of ME, they die of something else. It’s a bit like saying the 1918 flu epidemic was fine really because no one died of the flu. No, they didn’t, they died of pneumonia or other opportunistic infections. The fact is, however, that none of those people would have died if they didn’t have flu.
People don’t die of HIV, they die of the opportunistic infections.
There is a strongly supported hypothesis that CFS should be renamed CIDS or CFIDS; Chronic (Fatigue) Immune deficiency Syndrome.
Pray for those who are fighting for Ampligen to be approved. There are people so ill they were bedbound until they received Ampligen in trials. It might not be a cure-all for ME/cfs/cfids/whatever-the-hell-this-is but it certainly helps some people.
Yesterday after delays caused by the snow my new heart monitor arrived. It’s a watch with a chest strap. I bought one of the cheaper ones thinking it would do. It doesn’t work. The watch doesn’t recognise the chest strap. So I am sending it back.
Now I wonder whether to try again and get one of the expensive ones. On the lists people tend to recommend the
ideally I would like a simple heart rate monitor that will monitor my heart rate all day and with an alarm so that if I go above a certain rate it tells me to stop it.
I had set my personal limit at 125 and was using the finger pulse and oxy to check. However I can’t wear it so I tend to have it there and check my heart rate once I start feeling rough. But this often means I don’t check until it’s up around 128 to 134ish. I would then sit down until it reduced to under 125 and then get on with whatever I was doing. This hasn’t been working. I am still crashing each day and feeling horrible quite often.
So the new plan was I would stop at 120 to see if keeping my HR under 120 would reduce symptoms. But for this I need a good reliable HR monitor so I can sit down or lie down as soon as my HR hits 120.
As I am not going to see the cardiologist any time soon, I thought I would try and do something to improve things myself. It’s a shot in the dark really but it seemed worth a try.
So. I need to rethink the monitor. If anyone can recommend one that’s reliable let me know.
I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.
I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home. Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.
She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.
I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.
So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.
This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better. I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.
I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.
Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.
But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.
If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?
In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.
I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!
Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.
Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.
Dr. Snell who has a background in sports medicine has done some fascinating research on this area.
There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.
Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.
I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the Professor’s sec would phone me tomorrow. I’ll be amazed if she does.
I am awake during this afternoon’s crash which is better than it has been!
I’ve not long got back from my chiropractic appointment. I know my GP doesn’t approve, but it really does help me. It’s not a long term solution for someone like me, but no one has pretended it is. However, just having those few days, sometimes up to two weeks where I am not so shaky and trembly; where I can stand up without tipping over, swaying; where my vision is clearer (not sure why that happens, but enjoy it while it’s there); Where the afternoon crash is not such a nosedive and the pain is less, down to 1 or 2 on the pain scale. It’s nice.
Today he gave me extra needles and he adjusts the treatment to how ill I am. I appreciate that a lot.
There are a lot of snake oil salesmen out there. More so thanks to the shocking lack of tests, treatment or basic care offered for ME/FM and dysautonomic patients on the NHS. I have come across many patients who have spent money they couldn’t afford or didn’t have trying to find some relief from all this and they are still very sick. I am fortunate that I have found some help with chiropractic treatments.
A petition was opened asking for the knighthood given to Simon Wessley to be removed. Wessley has done a great deal of work in the UK which has made sure patients are labelled with “false illness beliefs” and the “it’s all in yer ‘ead” attack most of us have faced. Thankfully the biomedical research is still happening in America, Australia and Denmark among other places. Lots of new answers are coming forward which explain why we are so sick, and there are some hopeful drugs out there. Amligen is still in play.
Wessley has demanded the petition be closed and so it has been. Those who set it up are hoping to find some free speech elsewhere. While I personally think the shutting down of a legitimate petition childish and rather nasty when you consider the lack of voice patients have, all is not lost. You can read some of the comments from the petition here.
I tend not to believe petitions do much good. We had a few going to support the intrinsic rights of families to home educate and the Labour Govt made it clear they couldn’t care less about rights or public opinion, unless it suited them. The same still goes or people like Wessley would be disciplined not rewarded.
Wessley’s GET made me much much sicker today than I would have been if I’d been given the Nancy Kilmas advice of bedrest. If I had rested in the beginning, as many patients who are in remission now did, I might be (though it isn’t certain of course) in remission. I read the research far too late.
So if you are reading this because you are newly ill or newly dx with one or more of these hideous diseases, don’t do what the doctors tell you until you have read the research and done so with great care. Some of the stuff is difficult to understand, but some of it is clear and straight forward. There are some great people out there who understand the complicated stuff and are willing to explain it.
Take charge of the disease, don’t let it take charge of you; and sadly you will have to treat what doctors say with extreme caution.
I tend to think I’m a bit old fashioned in many ways but having PoTs makes me modern it seems. It was identified by Schondorf and Low and named as POTS – Postural Orthostatic Tachycardia Syndrome in 1993, so not that long ago in medical history terms. I assume these gentlemen made the dx criteria of heartrate increase from lying down to standing of more than 30 beats per minute within 10 minutes of standing or hitting more than 120 beats per minute (for adults).
While many Potsies do have neurally mediated hypotension with this (NMH) where their blood pressure plummets with being upright, that is by no means the only Potsie flavour out there. Those of us with sudden hypertension or (like me) sudden massive BP spikes followed by equally massive falls are not as uncommon as might first appear.
Migraine; apparently this is a fairly common symptom with dysautonomias. I’ve had them one and off for years. As a child and teen they were utterly horrendous and very difficult to control. I ended up on some long term meds for about three years until finally they seem to go away. Then I would have one now and then. I would have an aura sometimes and soon learned that if I took enough meds once the aura started I could get away with a bad headache, but if I waited for the full on pain- nothing much helped. My more recent migraines have been kinder in that I have always had an aura. Lucky me! For those of you who don’t know- or maybe have an aura and haven’t recognised it, mine is like this; I get black dots and a sort of grey purple fog in front of my eyes. This is sometimes followed with the tunnel vision thing with white worms (sort of worms). As the tunnel vision gets worse and the black dots get thicker on comes the pain. If I get some migreleve pink before the worms I’m usually ok. I think that kind of aura is fairly common. Some people get a metallic smell or taste as well. I rarely get that.
This time however I had no aura and I was floored. Amitrip has been a great help keeping migraines at bay, but if I get one I take two pink Migraleve four hourly leaving four hours between the last pink to taking the night time amitrip. Now, that’s what I do but be warned – this is important – Migraleve and amitrip are contraindicated. That is you are not supposed to take them together as it can have some serious side effects. PLEASE , if you are in the same boat as me, be cautious. Most of us with these ‘orrid diseases have some drug sensitivities and I don’t want to cause problems for people.
If my GP knew what I get up to when he isn’t looking…!
I am still waiting for the results of the 24hr ECG and a new appt with the Cardiologist. Sadly I think I’ll need to be well enough to fight for results and stuff. I was warned when they unwired me. Ah well. I’ll give it another week and see.
I’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?
