A Patients Experience.
It was a little like living a life where you were standing on the outside looking in. Certainly I was there; I was alive, but not quite. I was watching myself, going about my everyday life; my business, but I was not really participating.
But to begin at the beginning; I was diagnosed with glaucoma in 1986, after a routine optician's visit showed that I had raised IOP (interocular pressure). This in turn led to a Consultants surgery where tests were undertaken that confirmed the pressure was high and 'open angle glaucoma' was diagnosed on the basis of the pressure (about 24, if I recall). I was placed then on a regimen of beta blocker eye drops, timolol maleate (timoptol), to be used twice per day. Not given any specific warnings about problems that could occur, I took these religiously, as I was told that I could lose peripheral vision if the disease progressed and eventual blindness could result.
I knew little about the ailment, despite having an Applied Science Degree in Human Biology and Biochemistry, because that had been twenty two years before and I had not used much of that knowledge as my life had taken a different turn (use it or lose it), taking in construction materials testing and crash barrier design; now I was self-employed as a Consultant. The research I did do however, confirmed that raised IOP was a surrogate marker for glaucoma, but let's face it, there was little Internet coverage then and I didn't really have much access to research, except through books and back issues of the Lancet and the BMJ. So I took the advice and carried on with the protocol.
Nothing much happened for a few years, but I did notice that I was losing my hair but put this down to age. I was becoming increasingly depressed as well; feeling detached from life. Whilst I had not lost all emotion, I did notice that stressful events did not impinge upon me as they used to do; that I was losing the ability to be scared almost. I was distant with my wife, my family and it seemed better to work than do anything else, and I had lots of work. My sleep patterns became erratic; I stayed up late often and then had really vivid dreams and many nightmares when I eventually did sleep. I panicked often, especially when away from home and had irrational fears about mundane things. This culminated one night in 1997 when I had so much trouble breathing that I was taken to A and E. They seemed to think I had asthma and gave me a nebulizer, which I used for all of two days when I realised this was complete 'tosh', I also had cold hands and feet, and had to wear gloves more often to stop my finger turning blue.
Then one day in 1999, at my annual review at the Consultants, I was told that I had to lose the drops I was using straight away and was to be given a new regimen of a prostaglandin analogue called 'Xalatan'. This was 'the new kid on the block' and my previous eye drops had been shown to cause asthma like symptoms in patients (oh really). Happy in a way, that this was now a once a day regimen and at night only, I adopted it with sanguine. Within a matter of a few weeks I started to get severe panic attacks; I would become frightened to drive on motorways. I had morbid fears and in 2000 I had a breakdown and was diagnosed with moderate to severe depression.
Despite my scepticism, I had psychotherapy. It helped a bit and as I now had antipathy to any drugs that were available for my condition ( I had refused Paroxetine), there was little else available to me. At the end of 2006 I left my wife, who had severe problems of her own that were being made worse by me. I blamed myself for all of this and my depression deepened until in 2008 a further crisis occurred that rendered me almost incapable of doing anything. I would burst into tears; I was unable to read anything for more than few minutes (I had been an avid reader). I couldn't concentrate on anything and had this awful sense of doom hanging over me constantly. My business nearly collapsed and what little wealth I did have was hit hard by the recession. I was falling back to earth, and without any parachute.
Then I found a new therapist; someone who was a 'real person', who talked to me the way no-one had before. She taught me how to rationalise my fears; explained to me that which had happened was a result of too much at the same time and that I had PTSD. It wasn't my fault anymore than it was anyone's. She was also fairly certain that some of the problems were related to rapid withdrawal from the beta blocker eye drops, which despite the contrary view of some Doctor's, and of course the makers, can trigger some of the symptoms I had, especially the cold hands and feet called Raynaud's Phenomenon or Disease.
As I began to take control of my life again I researched both the Raynaud's and the belief that I now had, that beta blocker eye drops had the capability to enter the bloodstream and act much the same as oral beta blockers prescribed for hypertension. I had been told that if used carefully and a finger is applied to the caruncula area of the eye (the bit near your nose) for about a minute, the drops should not be absorbed into the system. My research confounded this completely as experiminents had been done that indicated that the drops were absorbed as successfully as if if injected, and could invade the central nervous system with comparative ease.
There is no happy ending to this tale, except that I no longer take any eye drops, of any sort. It was determined quite recently that my IOP was now considered 'high-normal' and watchful waiting should be employed.This came about as I had sought help for an allergic reaction to Prostaglandin which brought on a dreadful skin condition called Erythasma (It took four months to diagnose).
I had had a somewhat less than successful operation for my right eye cataract in 2001 which caused some quite substantial 'posterior vitreous detachment', leaving me with a vertical band of blurring that 'flips' across my view as I move my eye. My left eye has also deteriorated quite rapidly recently, again with a cataract, that has caused Anisometropia (a huge difference in visual acuity between eyes). I am trying to make up my mind as to whether to have the cataract removed, to save my left eye vision or not.
This post is part of a series on patient experiences of drugs and treatments that I'm working on currently, along with many other things. I am particulary interested in drugs that pass through the blood brain barrier and exert an effect on mental health as well as their designated effect. so I decided to comence with one of my own experiencies. The following is the result of my research and is highly subjective, retrospective and anecdotal, but there is enough evidence, I feel, to lend quite some credence to my observations.
It is apparent to me, that I experienced some effects of the medication that were subject to the 'law of unintended consequences'. It has been proven that infusing eye drops, irrespective of any measure taken to ameliorate their invasion of the central nervous system, is almost as good as injection.
Lipopholic Beta Blockers are not something you need unless you are hypertensive and even then their side effects can be quite devastating.They also contribute to the formation of cataracts, especially in eye drop form.
Reynauds is also widely reported by most who take this type of beta blocker and many other anithypertensive drugs. It rarely resolves, even after stopping the drug (it never has with me).
It is almost certain, that when withdrawn without any 'tapering off' period that there would be some 'rebound' effect. So I almost certainly would have had elevated BP for some time after withdrawal (which I did), as well as an elevation of adrenaline and noradrenaline. These govern the 'flight or fight' response and to go from suppression to normality would have exerted some powerful emotions.
What is certain however is that neither my GP or Consultant took my problems with any degree of seriousness, warned me of the side effects of use or withdrawal, nor made any report about what was happening to the MHRA (or the MCA as it was then). I had to find and to fund my own therapy because even today, mental health is poorly funded or unavailable, or is so far into the future of a patient as to be viewed as such.
This is what happens in 'real world' medicine and mostly goes unreported, or is dismissed as a symptom of the disease or problem under treatment. Emotional and Mental problems are highly subjective and can only be anecdotally reported (mostly) so there is a reluctance to take patients seriously.
In defence of medicine (something I rarely do) it's unlikely that a similar scenario would be enacted today, as glaucoma has much more powerful diagnostic and testing tools. Photography is used extensively to view the optic nerve and the diagnosis is usually not solely dictated by elevated IOP. Even this marker has been set higher than it was in the 1980's and figures of 21-22 would not be viewed with the same alarm as they were then. The problem may be that those diagnosed some years ago can be left behind and remain in this hinterland, of being on a relatively dangerous medication, that has significant side effects for no useful purpose and very little note has been taken of the extensive research that shows eyedrops can be absorbed into the system much more readily than was thought. Topical should be viewed more as in vivo than many believe.
Whilst this information is anecdotal, in that it is retrospective and self reported, there is a foundation of both cause and effect here that leads me to the belief that at least some of the problems were caused by the use of these eyedrops. It is far too late to do very much about it other than to report it for others to take heed.
If any readers have problems I would suggest they report to.... well anyone who will listen, but try https://www.rxisk.org/Default.aspx
Tuesday, 7 January 2014
|Oliver Wendell Holmes.|
(so said Oliver Wendell Holmes).
He excluded Opium and Alcohol, powerful medicines of the day (1860), as would I.
If the NHS and Pharma are to believed, we are all suffering, as a Nation, from a lack of Drugs, Interventions for Health and Implementation of Guidelines. General Practitioners, clamouring for our attention, wish us to adopt 'healthy lifestyles': stop smoking and drinking alcohol, eat 'five a day'; get our vaccinations; get our blood pressure down; our cholesterol (sic) down, but above all get tested, tested, tested, and then 'do what we we tell you, you morons!'
Once tested, they will wish us to accede to a 'polypharma' of drugs and dietary interventions to enable us to live longer and especially not perish from Heart disease or Cancer, but the third largest cause of our demise (in the World); Prescription Drugs, will be neatly sidestepped and never mentioned. Delusional as they are, Doctors, embedded in their hubris of 'caring' for their patients, fail at its first hurdle of 'do no harm'. We as patients, are likewise deluded that we can stave off sickness and morbidity by slavishly (or not) following their advice in the vain hope of an extra few days, weeks or at best months of additional (but miserable) life.
The effectiveness of medical interventions to save our lives has always been over emphasised. Death often stalked our lives in the nineteenth and early twentieth centuries in the form of tuberculosis, diphtheria and cholera, but these were modified more by societal changes, long before we had the capability of curing them.When Koch isolated the Tuberculosis bacillus in 1882 mortality had already fallen by by some 50% in the preceding 50 years for this disease. Before widespread immunisation and the advent of successful treatments with antibacterials, the mortality rate had fallen from 70 per 1000 (1812) to 5 per 1000 (1944). Similarly most infectious diseases were in decline long before Medicine had the interventions available to modify or cure them. This in the main has to be attributed to better nutrition, clean water, effective sewage systems and resistance to disease; we have to thank Engineers for this, more than Doctors.
Improvements in general health can also be attributed to simple non medical measures; soap, scissors and disinfectants, wrought a miracle in the deaths of babies and their mothers.Contraception, even its crudest forms reduced unwanted pregnancies and the associated mortality's it fosters. It also has to be said, that the discovery of the sulfa drugs' and penicillins' changed the aetiology of infections, especially battlefield wounds. The miracle was that bacterial infections no longer took lives and those previously condemned, arose from their deathbeds to resume a useful life (or pick up a rifle again). The early vaccination of children also reduced childhood mortality significantly in the third quarter of the twentieth century, although the plethora of those initiated today has a more dubious legacy and sometimes a terrible one.
The rhetoric that modern medicine is highly effective is writ large by Doctors' and Politicians' but is far from the truth. Certainly the discoveries of the first half of the twentieth century have had significant impact upon the disease burden of mankind; well in rich populations at least. But little that has been initiated since, has had any real impact on that which kills us and worse; much of that which passes for modern medicine is actually doing a lot of the killing, or at best, modifying symptoms and that is Prescription Drugs.
In the field of Cancer little has been achieved in forty years, that reduces mortality in 90% of the common cancers (Lung, Breast, Colon). There has however been an explosion of Drugs and Treatment Protocols, most of which are highly toxic and of dubious efficacy. The cost of these has been counted in Billions per annum and at best are 'treatments' not cures. Treatments are good (cures are not); they give hope, however false, to both Patient and Doctor, that 'something' is being done, no matter how futile or expensive and they give 'Pharma' a licence to charge whatever they feel like for it. Avastin for instance, costs £25k (April 2013) to extend the life of a colon cancer patient, for about six more weeks. That will be six weeks of absolute misery, suffering from the side effects of the drug and the chemotherapy that goes with it. Yet patient advocacy groups, often funded by 'Pharma', clamour for it with ever increasing stridency which has caused the institution of special fund (UK Cancer Drugs Fund) to buy it and other stupidly expensive, highly dubious drugs.
We are now beset by a quite different group of sicknesses and diseases than those of our forefathers, unless you are very poor, living in a war zone, or an area of climactic disaster, when most of the old diseases arise or increase, just as in times past. These of course are the 'modern' epidemics of; Diabetes, Obesity, Heart Disease, Respiratory Diseases, and many Cancers. With these also go; Hypertension, High Cholesterol, Osteoporosis ADHD, PTSD, Depression and Bipolar Disorder, most of which having been largely 'invented' and for which we usually have no symptoms, little likelihood of morbidity (unless we believe 'Pharma' and its whores) but a whole plethora of drugs with we which we can be treated, some just to achieve a slightly lower surrogate marker of something we didn't know we had! So now we have drugs that hark back to the beginnings of 'Pharmas' inexorable rise to fortune; 'snake oil' treatments, that promise much and deliver very little.
Greed and corruption have dominated Health care in the last forty or so years just as it did in the nineteenth century. Certainly Roche no longer sells us Heroine (diacetylmorphine) illegally, upon which it built its fortunes, in the gap between the two World Wars, but more subtle, nonetheless completely immoral 'scams' are perpetrated continually by 'Pharma'.
Take for instance citalopram (Cipramil), Lundbeck's SSRI from 1989. This drug is a stereoisomer, both of which are 'mirror' images of each other; one of which is the 'active' component. The drug was about to run out of patent in 2002, thus allowing generics to be made at much lower prices legitimately. So Lundbeck then patented the other isomer; escitalopram (Cipralex); and charged nineteen times as much for it even though it was the same drug! The worst aspect of this charade was that the stupid, gullible (or corrupt?) doctors then proceeded to boycott the 'old' version in favour of the new!
We also have the 'me too' drugs that dominate the market once a new drug, or more likely a slightly different play on an old one, comes out. That is why we had a plethora of 'statins' once Merke patented Mevacor in 1987; nine by 2010 plus the combinations. But statins are but the tip of an iceberg of drugs specifically targeted at 'diseases of invention', primarily to sell a drug rather than inventing one to treat a 'real' disease.
There are literally thousands of instances like this, and together with the invention of diseases we have the 'missing data', the submission of thousands of non-searchable computer files for drug approval, literally meters long folder sets, for drug trials, hiding data in 'offshore' data caches, on the pretext of security. The use of 'seeding trials', recruiting of Key Opinion Leaders (KOLS) who are Doctors, paid consultancy fee's to 'push' the latest drugs at conferences and seminars purported to be 'teaching' other Doctors of the latest advances in Medicine. These are but thinly veiled promotional exercises funded by 'Pharma' to persuade Doctors to write their scrips for the product being discussed.
To these deceptions, in Primary Care we have to add the needs of the Quality Outcomes Framework protocols, the vaccination programmes for infants, minors, the elderly, pregnant women(?) and of course the full gamut of tests and management of pregnancy (sic), health checks for the elderly and those whose chronic aliments are being 'managed' in Primary Care, such as COPD, Asthma, Hypertension, High Cholesterol, Diabetes, Schizophrenia, Bipolar Disorder (another invention), Depression; the list is endless! Is it any wonder that A and E is under pressure when the chances of obtaining an appointment with a Doctor is slim to none (and slim has just left the surgery). If like me and many others, you are given a time in the far distant future, to see a Doctor, and your problem begins to get really serious, what alternatives are you left with? Answers on a post card please to one Jeremy Hunt MP.
What is the point of a system of a 'free at the point of treatment' health care system, if all of the Doctors involved are so busy earning points on the QOF (and points mean prizes), to bolster their salary, and pander to the Politicians and the 'worried well', instead of actually treating sick people? This is especially the case if diagnostic procedures undertaken in the name of better health and longer life, even when high levels of treatment are then undertaken, have no impact whatsoever on life expectancy, which is the case in virtually all of theses protocols. (His cholesterol was fine but the patient died). Health care and the NHS needs a new beginning
The NHS commenced its life as a fine and wonderful concept. It was meant to provide a milieu of Health unavailable before to the bulk of the populace with the aim of raising standards to a position whereby the costs would reduce to reflect this 'Healthier' paradigm of the people. Well, that was the stated aim of Beveridge anyway. It did not come to pass. Instead we had ever increasing demands for Drugs, Treatments, Vaccines, and Screening of one sort or another. Between them, Pharma, Doctors and Politicians colluded to produce and strengthen industrial levels of growth in Health Care, at the expense of patient care and personal ownership of 'self'.In doing so they have robbed society of its ability to distinguish between benefit and harm.
The cost of the NHS has grown from around 3% of GDP to more than 10%, without any real reduction in Mortality or Morbidity. As some diseases have waned, others have taken their place so the morbidity that was viewed as being responsive to treatment in 1948, has defied efforts to be modified by Health care. Iatrogenesis has become one of the leading causes of death and harm, so surely we have to come to the conclusion, that in providing more, we have been delivered of much less. We cannot afford in both monetary and moral terms to continue in an endeavour that robs us of control over own health; we need to redact that part of pact we have had with NHS and Doctors that we would listen to their advice and submit to their ministrations without question. Collectively they have colluded with Politicians and the Food and Drug conglomerates at our expense, to construct an Empire of Deception, Fraud and almost limitless power.
We have to learn to accept as persons, the limits of what can be achieved in Health Care and shun the concept we have been sold, that everything can be 'treated', because we need to foster control of our own lives and health. The concept of screening has delivered much more harm than good, despite vast expenditure and the construction of a flawed view that it saves lives; it does more to end them.
We can devise a new pact with Doctors, based upon an understanding that they are no longer gifted with omnipotence nor are they the gatekeepers of Health, or the arbiters of our access to treatments or benefits we may actually need, (rather than what they think we need or would like bestow). They need to become truly the Patients Advocate rather than the mouthpiece of Politicians and Control Freaks. We need to be given the stature of ownership of ourselves and how we wish to live and thrive without the constant drip feed of censure from Medicine founded in obfuscation, corruption and privilege. We need to return Science to the 'real' Scientists rather than those who manipulate research to their own specious ends.