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Trapped……

6 Jun

‘I can ramble on endlessly about politics, religion, science, inequality, war and a hundred other things but the subject I find hardest to express is my own struggle with chronic depression and anxiety, predominantly because I can’t find the words and believe that only another sufferer can really understand……’

Depression has the outward appearance of ‘normality’. It doesn’t come with a plaster cast, visible scars or crutches; it is an invisible, insidious disease. This does not diminish its impact which can be just as debilitating as any physical illness……

Head_04I cannot tell you when I first became depressed, or why, but I live in what feels like a pinball machine being bounced from one crisis to another, all having an accumulative effect over my entire life and illness. Therein lies one of the problems with chronic depression because from an observer’s point of view they usually ask the same questions; why are you so unhappy and what would make you happy; both of which I can’t answer. I can tell you how it manifests but I cannot emphasise enough that this is after suffering for over 30 years. One distressing event in your life is usually surmountable; it’s when years of seemingly endless distress continues that the problem reaches epic scales.

Head_03Days vary; some are better than others but always with an underlying presence. One of depression’s most cruel and insidious effects are on sleep, or the lack of it. No matter what I try I find it impossible to establish a reasonable sleep pattern (even with prescription sleeping tablets). Chronic Insomnia on its own is known to dramatically affect your mood and your ability to concentrate. Added to an already deeply engrained depression insomnia becomes a double edged sword. When all you would rather do is sleep to escape the misery, insomnia puts the dampers on. So, not only can you not sleep but the time drags along making five minutes feel like an hour. I also suffer from sleep paralysis; a situation which occurs both when you fall asleep and wake up. It may only last for seconds and is a state of semi-consciousness where you are aware of not being fully asleep but cannot move. If combined with a nightmare or post-traumatic stress disorder it is truly terrifying fighting to escape to consciousness.

I have become so ill I contemplate suicide almost daily. It seems like the only way to escape from the prison inside your head. It also has a profound effect on your ability to function ‘normally’. I don’t eat properly, I get no exercise, I rarely leave my room and fear of the outside world can be paralysing. It’s not a secret amongst people who know me that I self-medicate, which is not uncommon, and is usually partly as a result of the medical establishment failing to deal with problems quickly and with the right choice of treatment; which is woefully inadequate. The upshot of the inadequate treatment of mental health issues is years of torment as you scream for help which never comes……

Early and appropriate intervention is fundamental for curing any illness; however, your overworkedHead_Pills_01 GP will simply reach for the prescription pad. There are dozens of anti-depressants and finding the one which may help you can take months. More often than not, once you’ve tried them and they don’t work you either continue to take whichever ‘lucky dip’ pills you’ve ended up on (usually the cheapest, not the best), or just give up altogether. Someone suffering from serious chronic depression is unlikely to enthusiastically keep returning to their GP to ask to try something new. The second and probably most important thing someone with depression needs is therapy. But this is a major problem; first of all you will wait months for an assessment. Then, if you’re lucky, you may be offered counselling; in my case four sessions. Four sessions with somebody you may not be comfortable to disclose your innermost traumatic childhood experiences with, and four hours is not sufficient to scratch the surface of 30 years of dysfunctional living, addiction, obsessive compulsive behaviours and despair. All of the time that passes so slowly only makes your situation worse and it becomes incredibly difficult to ever recover……

Head_01Although friends try to help nothing they say has much effect. The most annoying thing I’ve heard a hundred times is, “If you’ve reached rock bottom things can only get better”. Meant in good faith and from non-medical people the sentiment is appreciated but things do continue to get worse. Maybe there is a ‘rock bottom’ but for me things just get worse.

From my point of view the future isn’t something I look forward too. I see my situation as unchanging and a future in which things only appear more bleak the further away I dare to contemplate. I’m isolated, stuck in a challenging domestic situation, I feel I have no prospects of ever reaching the ‘aspirational’ trappings of success and feel that nothing will change, and I will become old, poor and lonely. In truth this will not happen because I will exercise the only control I feel I have left and which is guaranteed to end my daily inner distress; suicide. This isn’t a threat or a ‘cry for help’, it is a simple solution and when my choice will not affect the person I love, I will proceed with a sense of relief……

If there is any possibility that I can be ‘cured’ or at least feel that things were to improve, then I may re-evaluate my future but in the absence of long term, specialist intervention, I cannot envisage that future……

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Psychotropic Snake Oil……

7 May

‘The Income of the pharmaceutical industry is huge. Much of that income comes from the drugs used to treat mental health. The chances are that at some point in your life you may be prescribed one of these drugs. If you thought that psychiatric medicine is based on sound scientific principles, think again and read on……’

 

Diagnosing Mental Health Illness……dsm5

Unlike any other area of medicine, mental health cannot be diagnosed through a blood, urine or any other scientific test. It is based on the way in which you answer the doctor’s questions and upon the way you are feeling. This is of course subjective. The range of human emotions is wide and covers the elation of child birth through to the sadness of bereavement and everything in between. In many cases there are multiple choice questionnaires, which can be found online. They contain questions such as “I feel sad”, with answers ranging from; not very often, once or twice each month, twice per week and every other day. Try one for yourself online and even if you are perfectly contented with your life you may discover that you have depression, anxiety or even bi-polar disorder (The pharmaceutical industry are often behind ‘self diagnosis’ websites in order to prompt a visit to the GP). The only other element in the diagnosis is the Diagnostic and Statistical Manual of Mental Health (DSM), which categorises and matches your ‘symptoms’ with a known mental health disorder. With each new edition of the DSM come new diagnoses. In the DSM I, published in the 1950s, there were 106. The latest edition, DSM V, lists over 300……

 

Once you have a Diagnosis……

Before the 1950s talking therapies were the main way of treating mild to moderate mental health illness. More severe conditions such as Psychosis usually led to hospitalisation, possibly Electro-Convulsive Therapy and even surgical Lobotomy. Contemporary treatments usually involve the prescription of Psychotropic drugs. These fall into many categories but all are thought to affect Neurotransmitters, the main ones being Serotonin and Noradrenalin, although no one really knows how or why they work.

So, supposing you have suffered the bereavement of a long term partner and are feeling down, a little lost and have difficulty concentrating and sleeping. Then you are feeling what humans have felt since time immemorial, however, your doctor may well tell you that you have depression and, after a 15 or 20 minute consultation, you leave with a prescription for an antidepressant; a powerful psychotropic drug with potentially deadly side effects……

 

pills1Developing and Testing Psychotropic Drugs……

After initial laboratory tests for toxicity etc, human trials begin. They often last a maximum of eight weeks; some only four. They are only tested against a placebo and not any other drug. Providing the side effects are moderate in the test group which consists of carefully chosen, healthy people, they can be approved for public use. At this point the public become the guinea pigs, sometimes with devastating consequences……

 

Antidepressants and Suicide……

There are hundreds of well documented cases of people visiting their GP at a difficult time in their life, being prescribed antidepressants and committing suicide within days of starting their medication; remember these are powerful psychotropic drugs. But surely this would have been noticed in the trials? Not if the results are manipulated by interested parties; namely, the pharmaceutical industry that test them. Altering statistics is easy; when trialling the drug you simply leave out the question “Did this medication make you feel suicidal?” We are so used to answering multiple choice questionnaires that clever questioning can return either positive or negative answers depending on how the question was asked, that is, if it was asked at all. They may not make someone who is in perfect health feel that way but if you have been under stress and have a low mood, as in the example given earlier, they can have a far more powerful effect……

 

A Conflict of Interests……seven-pharma-logos-300x200

Any regular readers of my blog will be well aware of the close relationships that exist between industries, regulators, politics and money. It used to be called corruption; paying for politicians’ VIP days out, lobbying and making large donations to political parties. But it seems laws and ethics only apply to the likes of you and I. The pharmaceutical industries are more than happy to pay huge grants to fund research at universities; the same universities that the Psychiatrists who write favourable papers for medical journals work at. Doctors require patients and patients require diseases; diseases that require drugs to treat them. You get the point……

 

Finally……

There are some people with mental health issues that may benefit from medication, but they should be closely monitored and the cause of their distress identified and dealt with alongside medication. Unfortunately, an NHS with limited resources are not able to deliver a high enough standard of care, especially when it comes to talking therapies, so a large group of people get left on medication to numb the pain; medication whose side effects have never been tested beyond a few weeks and what long term damage they may do is an ongoing trial, one in which you may be taking part……

DT_Triangle_Banner‘I am still awaiting a reply to my letter to the Foreign Secretary but I’ll let you know when I do (see previous post “Correspondence with the Government”)……’

 

Big Brother – Beware……

18 Feb

The Care Data Project – A Snoopers Charter……BB_Eye_01

During these times of austerity our Government has announced its latest hugely expensive, unnecessary and intrusive IT project, which based on their track record will cost three times as much as has been budgeted for and not work……

The new database will include medical information collected from your GP and hospital records.  It is unclear if this a re-launch of a proposal made at the start of the coalition or something entirely unconnected.  But, like the last attempt, it is an ‘opt out’ rather than ‘opt in’ system.

nhs_logoThe proposed database is intended to improve patient outcomes and, although the data stored will be anonymous, it is not beyond the capability of hackers to trace its source.  It is unclear at this stage who will have legitimate access to the information stored and as we have learnt, it is not beyond major multinational companies to employ dubious and illegal methods to obtain whatever they need……

GPs have expressed concerns over the new database and although it is reported to be ‘anonymous’, the Police can access the database under certain circumstances; no specific details of what circumstances would warrant this……

The Pharmaceutical industry would also have access.big-brother-01

Cost Benefit Analysis……

In yet another disturbing story, the Government is pushing the BMA and NICE to apply a cost benefit analysis to the prescribing of some medications.  There has been talk of withholding medications from older people.  Although it may be beneficial for the patient, their contribution to society may not be as good as that of a younger man with the same condition.  It is almost as if they are regarding us as batteries……

‘Since writing this article is has become clear that this IT project is the one previously……’

 

The original article was entitled ’The Snoopers Charter (Cont’d)’ posted on 28 December……

Addiction, Corruption and Democracy……

12 Sep

The National Health Service is letting down large groups in society because of the Government’s inability to act on the advice of specialist healthcare professionals whilst impeding progress to service improvements with endless committees, reports and commissions.  This is particularly true of Drug and Alcohol services despite a unanimous consensus that the current status quo isn’t working and which has a detrimental effect on communities, businesses and the legal system……

House of Commons Affairs Committee……

As if any further demonstration was needed, after a year long enquiry into drugs and addiction, which reported to the fingers-in-earsCommons Affair Committee earlier this year, Keith Vaz recommended the immediate setting up a special Royal Commission as it was a ‘critical, now or never moment for serious reform’ and should report by 2015.  All he has achieved by making this recommendation is a delay in any action being taken until 2015, or later.  The Prime Minister, David Cameron, dismissed the call when one week earlier his deputy, Nick Clegg, backed the call, telling the BBC that is was time to break the conspiracy of silence in which serving politicians shy away from a proper discussion on drug policy……

The UK Drugs Policy Commission……

The UKPDC was given six years to look into drug and alcohol services.  Its remit has now come to an end.  The full report can be downloaded as a PDF file by clicking here.

In brief the UKDPC conclusions are not that different from many of the reports the Government has commissioned.  They say the way in which we collect and analyse evidence is woefully inadequate and that holds back cost effective policies. They also refer to the systems used in Canada where users are provided with a clean, monitored environment in which to use their drugs.  Their report also highlights the disjointed approach to tackling drug and alcohol problems where the Police, Mental Health Services, Family Services and other agencies don’t work in tandem on the problem……

Burying your Head in the Sand……

Current Policy

Current Policy

Some readers may remember Prof. David Nutt who was the Government’s Chief Advisor on drug policy.  Prof. Nutt proposed alternatives to the ‘standard’ Methadone or Subutex treatments that are use in the UK, advocating instead the use of Dia-Morphine.  This was not the ‘advice’ that the Government wanted to hear, so they sacked Prof. Nutt and found an ‘advisor’ that agreed with their limited vision toward drug treatments……

Drugs Don’t Kill People, Policies Do……

Heroin is the street name for Dia-Morphine, a drug that is used in hospitals every day.  It has a very low impact on the body and is no more dangerous than a Paracetamol.  The damage caused to Heroin addicts is not caused by the drug, rather the lifestyle that goes with it.  Finding the money to pay for it causes crime.  The drug is acquired illicitly and may be contaminated which causes the health issues, as does the cross contamination from sharing equipment.  The illicit nature of the drug means that the user does not know how strong it is, which can lead to overdose.  The list goes on.  If, like Prof. Nutt suggested, it was provided on prescription all of the potential harms are removed or controlled.  But ‘Prescribe Heroin to Heroin addicts’ is not the recommendation the politicians wanted.  It is a political hot potato so it is easier to continue with the status quo, even if that has an impact on the legal system with people being burgled, shoplifting, supporting organised crime and terrorism etc.

So, there is the political answer.  Rather than saving lives, reducing crime and offering what has been proven in all peer reviewed trials to be an effective treatment, MPs want the current situation to continue for fear of unpopularity amongst some ‘Sun’ readers.

The same self serving attitudes are the reason they don’t want to ban cigarette advertising or minimum alcohol pricing; 1, popularity and 2, upsetting their paymasters……

We’re all in this Together……

Only we’re not.  Very few of us earn £80,000 per year, with another £135,000 expenses to cover our first class travel, luxury business lunches and mandatory second homes.  Very few of us have ‘consultancy’ jobs paying £1,500 per hour for 2 hours asqcomp08 week and very few of us are given gifts to go to the Chelsea Flower Show with a champagne lunch thrown in.  And, very few of us have work contract that is completely blank and allows us act as we see fit.  Finally, very few of us get a whole years wages when we loose our jobs and go on to work for some of the ‘friends’ we made when we were in power.

Is it any surprise that the Government are unable to close the tax loopholes that allow billions to go unpaid or that they we able to find billions to bail out the privately held banks that are still returning large payouts to shareholders and multi-million pound remuneration packages for their employees.  I distinctly remember David Cameron state ‘No banker will receive more than £2000 as a bonus’ under his leadership; maybe I imagined it……

Democracy……

The will of the people, no, democracy; an old boy network that act in their own interest and in the interest of companies and people who will be of use to them when they loose their seat, as they inevitably will……

‘If only we were all in it together……’

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The Crazy World of Medicine……

20 Jun

Austerity is the word of moment.  Accident and Emergency departments are stretched to breaking point; many are closing as are smaller local hospitals.  In a bid to make efficiency savings vital specialist services such as children’s Cardiology departments are be merged into fewer centres.  Some drugs are deemed too expensive, despite there efficacy, whilst other are available under a ‘post code lottery’.  Mental health services have been particularly adversely affected and offer very little in specialist counselling, leaving many people on ineffective medication in its place.  And yet, amidst all of this Homeopathy is an available treatment from the NHS……

Homeopathy was conceived by Samuel Hahnemann in 1796 and based on the principal of similia similibus curentur (like cures like), according to which a substance that causes the symptoms of a disease in a healthy person will act as a cure in a sick person.  Despite rigorous scientific testing is has been proven beyond doubt to be completely implausible and ineffective.  At best it performs in line with the results one would expect from a placebo, at worst it may even be harmful, especially if the patient has such faith in Homeopathy that they forego conventional, proven medical treatments……

Homeopathy has devised its own ‘scientific’ language to describe its treatments.  The original substance which may, or may not be associated with the illness it is intended to treat is diluted with distilled water or alcohol and further diluted.  This process continues until the required dilution is reached.  Counter intuitively, the more dilute the original; the more potent it is considered.  The amounts by which the treatments are diluted defy logic.  For example a Homeopathic dilution of ‘30C’ (the Homeopathic scale), 1ml of solution would be found in a cube of water with sides measuring 1,000,000,000,000,000,000 meters, or 106 light years square.  This means that a 30C Homeopathic remedy is what scientist call ‘water’.  It is far more likely that the solution is contaminated with other substances during the dilution process which has in itself more in common with Witch Doctors than Medical Practitioners.  In fact, there is not enough water on Earth to produce the highest Homeopathic dilutions, yet it is still offered as an alternative treatment by the NHS……

Anecdotal evidence from patients whom swear by the effectiveness of Homeopathy amounts to no evidence whatsoever.  I have a friend with OCD who must stand on every crack in the pavement lest he should suffer bad luck for the rest of that day.  He requires the help of the overstretched Mental Health Services as do the advocates of Homeopathy, which they may be able to get were it not for the latter……

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Human Rights, Morality, Dignity and Public Image……

20 Apr

‘I an returning to a subject which I have covered before and the original articles can be found at the 18 July 2012 entry “Tony Nicklison’s Right to Die” and, 27 August 2012 “Tony Nicklinson – A Fight for Dignity” – Enter “Tony Nicklinson” into the site’s search box to find the articles……’

‘The case of a paralysed man who wants the right to end his own life will be heard in the Court of Appeal next month and public health leaders in Brighton will consider recommendations regarding the treatment of drug addicts within the city.  Although apparently unrelated both of these issues remain unresolved, despite having clear solutions and are being held up by bureaucratic stupidity rather than any real concerns for the people affected……’

What do they have in Common…..?

Real people’s lives; real people, in real situations, that affect real quality of life to them and that of those who care for them.  Not the philosophical or ideological arguments about the morality and rights and wrongs of certain courses of action which bear no relevance to the issues of the individuals bringing the cases.  Whilst considerations have to be given to potential abuses of any changes made to laws there are quite clearly situations that arise and transcend legal, moral and political arguments.  Euthanasia and the treatment of addiction are two instances that have large amounts of scientific, peer reviewed evidence in support of the proposals.  However, instead of consideration of the individuals affected by these cases they are soon overshadowed by the wider arguments which claim the vulnerabilities of some groups in society and the potential for abuse are placed at the forefront of the debates, making the individual’s logical and well demonstrated cases being over ruled by what could be described as the legal professions equivalent of NIMBYism……

 

The Case of Paul Lamb’s Continuation of Tony Nicklinson’s Fight……

Paul Lamb

Paul Lamb

Paul bravely picked up the torch from Tony Nicklinson who died last year from complications related to his illness shortly after loosing the legal bid to allow a doctor to assist in his suicide, with protection from prosecution.  Tony, like Paul, felt that their quality of life was so profoundly affected by their medical conditions they simply wanted the choice to end their lives with dignity at some point in the future when they deemed it appropriate, with the support of their families.  Both incredibly articulate and intelligent men there was no questions that arose surrounding the possibility of outside pressure leading them to make such a brave and considered request.  Suicide is not illegal and those who are able bodied can take steps to bring about the end of their lives should they wish to do so, but due to Paul and Tony’s practical physical restrictions it would almost certainly require a degree of help from another person, whether a family member or doctor leaving them with the possibility of facing charges, including murder.  This is not a situation which Paul and Tony found acceptable, that someone close to them who had may have had to endure the pain of watching their loved ones suffering, may be put through the trauma of facing a public trial.

It is here that the politically correct version of NIMBYism enters the equation.  I completely accept that safeguards would have to considered when granting the sort of requests that Paul and Tony were asking for but, in both cases, even a layman can clearly see that their cases were in no way influenced by external pressures from the families in fact nothing could be further from the reality.  These articulate men were presenting an indisputable case for a member of the medical establishment to assist in what would be a painless act of mercy to end their suffering.  There are no grey areas in the hypothesis and I strongly feel that under such clear and indisputable circumstances a change to the regulations is workable.

I wish Paul every success in his challenge to the current status quo……

The Treatment of Addiction……

Although, these cases appear to unrelated they do share a number of similar institutionalised orthodoxies, which despite years of scientific peer reviewed studies, all of which draw very similar conclusions, they continue to be ignored by the medical services charged with delivering results; again displaying the politically correct NUMBYism that does not affect the people who are either, going through, effected by someone who is going through or as a part of the structure of institutions charged with producing results using a methodology which has been proven to be largely ineffective and they are unwilling to change.  All of this despite the fact that what is considered by science and medicine as the best practice, demonstrated by favourable results within the small scale trials which sometimes take place……

The National Approach to Dealing with Opiate Addiction……

A patient presents with an addiction to Heroin which is the ‘street’ name for Diamorphine Hydrochloride, commonly used in medicine for the management of post operative and severe pain.  The treatment given to all patients is a replacement therapy with either Methadone Hydrochloride or Bupronophine; both are Diamorphine substitutes but lacking in some of the characteristics of Diamorphine and, it is due to this subtle difference that the substitute medication regime fails in the majority of cases to prove effective.

The second contributory factor to the failure of substitute medication’s failure to prove effective is the delivery by whichever agency is charged with its prescribing.  The National Institute for Clinical Excellence list 8 key principals for dealing with Opiate addiction.  One of the first states that ‘the prescription of substitute medication alone does not constitute treatment and should be used with a psycho-social intervention’, or dealing with the psychological reasons for addictive behaviour.  This is simply not done.  The key workers a patient sees have little if any specialist training in dealing with patients physiological needs.

This approach has changed little in since the 1960s, which is when the prescription of Diamorphine was replaced by that of Methadone.  This was not done for the benefit of patients, rather as a result of one rogue doctor who was abusing his position and supplying drugs…….

What Does the Scientific Community Recommend……

 Over the past 30 years the UK Government have commissioned hundreds of studies into the most effective way of delivering the safest, most compliant method for patients and with the maximum harm reduction and every one has recommended the reintroduction of the prescribing of Diamorphine Hydrochloride; the drug to which Heroin addicts are addicted.  These studies show a compliancy of between 92 and 98% whereas with Methadone it is closer to 12%.  The tendency of users to carry on using Heroin on top of their Methadone prescriptions fuels crime, from local level to high end organised crime.  The need to make money to fund the patient’s habit again equates to crime.  The costs to the retail industry, criminal justice system and the cost of locking up offenders at a cost of £30,000 per year is completely false economics, especially as the solution to the problem is simple, advised in the NICE recommendations and falls within the legal framework already in place, it seems crazy to dismiss these scientifically quantified recommendations……

The Effect on the Individual Patient……

The patient is unable to control their drug usage (unless they were prescribed the appropriate substitute) and this leads to the crime, isolation from ‘normal’ life, depression and anxiety and the dangers of exposure to life threatening illnesses such as Hepatitis C and HIV.  There are also many inherent dangers with the 95% of the unknown substances with which the Diamorphine is ‘cut’ by unscrupulous dealers wishing to expand profits.  The damage caused by addiction to Opiates is not the Opiate itself, it is the behaviour associated with continued illicit drug use……

The Solution……

As has been proven by every scientific study into the best way to treat these people is to prescribe the drug to which they are addicted.  This has the effect of ending the destructive behaviour which causes the harm, giving the patient the opportunity to rebuild their lives after which they can be successfully detoxified and continue being a productive member of society.

Why is this not done despite recommendations to our Government that this is the best course of action?  Because of political motives.  Any government taking this approach would face accusations that they are supplying ‘illegal’ drugs to addicts when the truth of the matter is that they are supplying them anyway, albeit under a different name.  The initial cost may increase but the eventual outcomes would be more effective in reducing crime and relapse and, in reintegrating addicts into society.  It is not done for the same reason that people like Paul Lamb and Tony Nicklinson were not given the dignified options they needed; ineffective politicians, ineffective courts and the worry of the damage it might do to their public image and to hell with ‘real’ peoples lives.

There are several countries which have taken this approach including Switzerland, Canada, The Netherlands and Portugal.  All report positive results in both reducing harm to individuals and achieving abstinence……

‘Our political classes, many of whom have never worked or experienced the real world, should be ashamed of themselves for they do not care about individuals, they only care about themselves……

Tony Nicklinson

Tony Nicklinson

 

In memory of  Tony Nicklinson, 4 February 1954 – 22 August 2012……


The Man with Half a Brain……

18 Apr

‘Surprisingly, this article isn’t about the Chancellor of the Exchequer but I’m sure he would meet the criteria.  It’s about me, the man with half a brain; well almost……’

Background……

On a sunny June morning in 2011 I was out with my Mother when something strange happened to me.  My memory is a little vague in the lead up to and aftermath of the events of that day but this is what I do recall.

We were walking down the street about 300 yards from home when I began to feel a bit dizzy.  I sat on the floor, thinking it would pass and may have been as a result of my tendency towards being somewhat manic.  It didn’t.  Then I remember my vision becoming altered, which I apparently reported to my Mother.  Having dabbled with some hallucinogenic substances in my youth I can safely say the visual disturbance was like no ‘trip’ I’d ever experienced.  Next, I remember not being able to make sense of what was in front of me; I could see it but it was like looking at a 2D picture of the world.  The next thing I remember was waking up in an ambulance and not knowing where I was or what had happened.

My Mother later relayed the series of events to me.  She told me I had said ‘everything looks weird’, then my eyes rolled up into my head and I had a seizure which went on for around two minutes.  It was described as what one imagines a ‘classical’ Epileptic seizure to be; arms and legs twitching uncontrollably, foaming at the mouth and making strange noises.  To me this was a blank, for my Mother it was quite distressing and worrying.  A concerned passer by called for an ambulance and we were taken to A and E at the local hospital……

Diagnosis……

The doctors performed a CT scan, extracted the obligatory blood sample but didn’t take an EEG which, as I have now discovered due to the surprise of a specialist mental health nurse, was a strange omission for a patient presenting with my pathology.  The result was relayed to me at the time as being as ‘small’ benign cyst as the possible cause.  They suggested keeping me in over night but I felt okay and, knowing what it’s like to lay in a hospital bed, unnoticed, waiting eons for a doctor to discharge you, I made the decision to go home.  A follow up appointment was made with a Consultant Neurologist a couple of weeks later.  The only apparent damage at that time was a lump on my head and a few grazes as the result of keeling over and ‘tweaking’ on a pavement in shorts and a T-shirt, plus a feeling that I had pulled the muscles in my arms and legs, presumably as a result of the spasms.

Until the follow up appointment I had not seen the CT scan.  Perhaps now is a good time to refer you to the image (below).  It isn’t the actual scan of my head, as you don’t get a copy without some considerable expense, it is a ‘photo-shopped’ approximation but I assure you it’s fairly accurate.  Taken from the bottom looking up, the large void is in the left hand side, level with my ears, extending toward my eyes.

CT Scan - Cross Section

CT Scan – Cross Section

My Mother attended the appointment with me and explained the bits I was unaware of.  I gave them all the information I could with regard to the lead up and weird visual stuff.  There were two consultants present and they did what I assume is the usual ‘follow my finger’ stuff and shone lights in my eyes.  It was when they turned on the monitor to show me the CT scan that my alarm bells rang.  As they scrolled up and down the images I stopped them and asked them to confirm that I was seeing what I thought I was seeing.  They confirmed that I was and that the large black area that filled almost one quarter of my head was the cyst.  However, the cyst was benign and ‘unlikely’ to have caused the seizure.  Instead, it was concluded, that a reduction in prescription medication was the culprit but they would monitor the cyst to check for any changes.

Now I’m not a neurologist but I know a little about CT scans.  Anything suspicious like a tumour shows up white, like normal brain only with more solidity.  Anything containing fluid shows up black like a cyst, so I wasn’t particularly worried that I was imminently about to keel over and die from a brain tumour.  But the presence of a large black void in your head is unnerving and it did seem to be somewhat of a coincidence that a seizure caused by a reduction in medication just happened out of the blue and was in no way connected to the cyst.  Still, off I went happy in the knowledge that they intended to monitor it; until that is I received a letter explaining their diagnosis and discharging me without any follow up appointments……

The Un-Merry go Round……

I have had quite a lot of experience with doctors, in particular with mental health issues that have worsened over time.  And, despite having been prescribed more different types of anti-depressant and anti-anxiety medications that you can shake a proverbial stick at, nothing has alleviated my suffering.  During this time, which is around 20 years or so, every symptom, emotion and behaviour has been blamed on mental health issues.  Despite endless attempts to get help from the medical establishment it is like being on a merry-go-round where any alteration in one area is blamed on another, to the point at which I’ve stopped seeking help because it seems like a pointless exercise but then I had an unexpected revelation……

Perhaps I’m not Mad After all……

During a recent circuit of the merry-go-round I was referred to the local Community Mental Health Team for (yet another) assessment.  In my last encounter with the mental health specialists they stated that I had ‘too many complex factors impacting on mental health’ which I interpreted as ‘you’re too mad for us to do anything with’.  However, this time around the lady who did the assessment was startled to find out that I had a brain cyst that was not being monitored and she was the one who asked if I had ever had an EEG?  Having explained the many varied and strange symptoms I experience she though I should be referred to a Clinical Psychologist to establish any possible link.  Over that past few years I have had problems with my memory, blackouts and have been prone to rapid and dramatic swings of emotion, including having an extremely short fuse; all well documented symptoms of a brain cysts and all previously blamed on depression, anxiety or as the side effect of taking, or not taking drugs……

‘So maybe there is some light at the end of the very long and debilitating tunnel through which I have been travelling for so long.  The prospect of brain surgery doesn’t fill me with joy but if I can be put back to how I was before this all started 20 years ago, count me in……..’

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