Greg’s Dilemma: Riding a Backwards Bike

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December 21, 2015 | 22 Comments

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  1. I’d been greatly looking forward to Part Three of this series, and am a bit unsettled now that I’ve read it. It seems we’ve shifted the focus from “Greg’s Dilemma” to “Our Dilemma.” Greg’s problem was how to survive withdrawal from Paxil and Xanax. After several thwarted withdrawal attempts, he’d arrived at a well-nigh unbearable status quo. Yet he feared any change, whether up, down or sideways, might make things worse, and the change could be irreversible.

    Our dilemma as a Community or a Movement, as posed here, is different: How do we convince others, whether health care professionals or civilians, that our problems on drugs are both real and deadly serious? How do we fight the pervasive official denial of how bad the situation is, so we can get serious about solutions?

    That wasn’t Greg’s dilemma; he knew damn well how bad it was. His symptoms were also somewhat different from those of PSSD sufferers: Where they felt numbed, physically and emotionally, he seemed assaulted by hypersensitivity. Waves of despair and self-loathing, an almost constant gnawing panic – his state seemed like a monstrous caricature of the mild-to-moderate troubles that had first sent him to the doctor back in his college days. Understanding the depths of the problem, and the lack of authoritative answers, was if anything making matters worse. He dreaded trying anything, and he dreaded doing nothing. It was nice to find people who believed his problem was neither “fake” nor “psychosomatic.” But it didn’t offer him any way out.

    While there are no Capital-A Answers, there may be strategies for making things better. Switching from short-acting SSRI’s like Paxil to longer-acting ones like Prozac, and then tapering off the Prozac, has worked for some. (Some have had luck with a similar strategy for Lyrica and Neurontin.) Biofeedback, modified meditation techniques and other “psychological” moves might help at least partially. They work at least somewhat for chronic physical pain and other conditions that are by no means “psychosomatic” in origin.

    Finally, having dealt with both the Numbing Effects and the Hypersensitivity Effects of long-term antidepressant use, I’ve found the latter to be less stubbornly “tardive” than the former. There might be SOME natural light at the end of the withdrawal tunnel. I don’t know if any of these ideas would help Greg at all. But we shouldn’t fear to suggest them, lest he feel dissed or dismissed if they turn out not to work in his case.

    I don’t think these are really competing priorities. Finding partial answers to some of these miseries is not a distraction – it might actually help the search for long-term solutions. And we should not fear that if some recover at least partially from their drug-induced misery, it will somehow “prove” that those who do not are just poor deluded neurotics. Or that if the remedies they find are not 100% chemical, that will somehow “prove” the pills were not to blame after all. The last thing we need is to adopt as a principle the idea that “there is nothing that can be done” for persistent side effects.

    • Sounds like I’ve been more obscure than usual or more rushed than usual or trying to balance too many bits.

      Here’s where I think the dilemmas overlap.

      There is in large part complete denial that antidepressants cause any kind of withdrawal problem. When its accepted that there is a problem its grudgingly conceded that the problem might last two weeks or so – after that if you have ongoing problems your neuroses are showing.

      Even on such an extraordinary and respectful a site like Surviving Antidepressants when Stuart Shipko outlined some years ago that he thought the damage from antidepressants was often close to irreparable – there was uproar. For some it was clear that this kind of thing cannot be said – we have to support and encourage and of course everyone can get off if they just taper slow enough, are mindful enough etc.

      Well just as with PSSD, there are lots of people who are left in agonies for years afterwards, and any number of posts here on RxISK from people who seem spot on the money when they say no matter what they do they simply cannot stop.

      In the face of this no matter how balanced you were to begin with, you are going to doubt yourself. If your reality is something no book concedes can exist and the establishment tells you its all in your mind – you are going to doubt yourself from time to time and it was this that Greg seemed to be doing in the face of the Junig onslaught.

      And part of your problem is if you bring material from RxISK or from Mad in America or Surviving Antidepressants to your doctor that will just confirm you are nuts. This is just antipsychiatry, Church of Scientology, delinquent stuff and believing in it makes you unreachable. Unless you confess the one true faith we can’t help you – unless you cast out Satan etc.

      There is too much to say – so part of the problem is that posts like this one get too condensed. Will try to add a fourth in the Greg’s Dilemma series for next week – it will be called Feeling Blue

      DH

  2. Thanks David — I think the sub-species of denial you describe does exist in our “movement.” It may be matched by an equally furious denial in other quarters to recognize limited harm — or partial benefit.

    In addition to being mocked for their endless faction fights, I used to hear the Irish accused of routinely pillorying their own best leaders – only to embrace them as heroes once they were dead, or utterly defeated. Well, I’ve heard the same about the Black liberation struggle (and others as well) so I doubt it’s some Irish perversity. Maybe it can happen to any group of humans who are trampled on long enough – including “survivors” of psychiatric harm, on MiA or elsewhere.

    What I’ve noticed is that suffering itself can begin to appear a virtue, and insufficient suffering a betrayal – or at least grounds for suspicion. Not only must we not listen to someone who claims to have benefited from drugs or ECT (much less prescribed them!). Those who claim only subtle or temporary harm may be accorded less respect than those who claim utter devastation. Even those who simply never had ECT, or who were never forced to take any psychiatric treatment against their will, may start to feel vaguely guilty for their lack of oppression – almost like apologists or Uncle Toms.

    That may be why in some circles it is vigorously denied that anyone can “consent” to ECT. Activists will either point to the misinformation many patients are given, or simply appeal to their own horror at the concept of deliberately inducing seizures with electric jolts. How could anyone consent? they cry. Either you were simply lied to, or so traumatized that you longed for your own destruction. When debates get to this point, one can begin to fear exclusion from the ranks of the Most Oppressed. Failure to qualify downgrades your membership in the community, and perhaps even your right to speak.

    Still, I did consent to ECT, even if the results were not so good. And I think consent matters hugely. Yet I can understand the appeal of an invitation to re-classify myself as a “victim of forced ECT.” At least it would give me an ace up my sleeve, to be played should anyone try to devalue my point of view. This also seems to me a factor in the expanding number of people who demand protection from “triggering” words or images – something we once assumed only those suffering from really disabling PTSD symptoms might need. Once the ante is upped, those who do NOT feel “triggered” by a picture of a nurse or a positive mention of ECT may feel either inferior, or vaguely disloyal. Humans are strange, we are.

  3. My heart goes out to Ange and all the other sufferers whose words we read in comments here and on David’s Blog. That is, mainly, because I’ve walked the walk – not as a sufferer but as a carer. The main problem that I’ve seen in dealings with the ‘experts’ re:- psychiatric meds. given to people who’ve already suffered a bad reaction to such meds., is that they simply ‘talk the talk’ and fail to use their common sense. If you’ve already been hurt by an antidepressant, they try allsorts of other drug combinations to stabilise you and wonder why they fail to work. Yes, they will tell you, these work but for some reason they don’t work for you. Another ploy, of course, is the ‘it’s all in your mind’ – meaning ‘get a grip and go and live your life’.
    Why can they not see the simple fact that the initial medication has caused some sort of change in you that expecting the ‘usual reaction’ from another set of drugs is utter nonsense? They make my blood boil!
    Then along comes an ‘expert’ who thinks in a totally different way, gives you a suggestion (away from more drugs) which you are willing to try (because you have nothing to lose – no extra wonder pills to take). You try it and, hey presto, it doesn’t CURE you but, my word, what a difference it makes to your life and to that of your carers! Simples! (Am not mocking the suffering of the many – far from it but it certainly has worked for the one.)

  4. Doesn’t it all get a bit shitty, when we tell our doctors and the refusal is point blank and you die..and then you undie..

    Rushed into accepting and rushed into unaccepting…and there we are..simples.

    I drove from Scotland to England today and all I thought about in eleven hours was ‘antidepressants and the undead’, but, having got into a freezing caravan, and, warmed up, lets end the Year with our massive thanks and where we go next in 2016 is Up and Up and Up cos once you go down with something like Seroxat, it is the challenge of your life..

  5. Be wary of experts in all walks of life, expert implies someone who knows it all about a particular area its very very rare indeed to find any area of the human condition where one can know it all. I prefer specialists, a real specialist in an area makes the effort to learn more than they already know, listens to what others have to say on the topic and understands the limits of their own knowledge.

    On the topic of dependence on ADs I found myself musing over this earlier in the year whilst sitting in the ruins of an old castle on top of a hillside in North Wales this summer. I am basing what I say on my experience with venlafaxine and my own knowledge of models of addiction in which I do have a recognsied professional qualification. I often get called a counseller. I never use the term to describe myself, I merely say that I talk to people and listen to what they say for living.

    Anti depressants have been marketed as non addictive and I when started on venlafaxine had not questioned this ‘accepted wisdom,’ something else to be wary of is accepted wisdom. Dependence developed after about 6 months use I would say in retrospect followed by 6 further months in which I took the drug for no other reason than I could not function if I missed a dose and I during the last 3 months of my year on venlafaxine I could not function on the drug.

    The most widely accepted model of addiction is Edwards and Gross’s ‘Dependence Syndrome’ model which dates from the mid 70s. Would what happended to myself qualify as addiction in this model. I would say thats 50/50. However the dependence syndrome model is no the only model of addiction that exists and this is what I found myself musing over during the summer whilst sitting in a ruined castle.

    If I look at my own experience with other models of addiction I came to the conclusion that it clearly qualifies as addiction. For example the classic ‘disease’ model of addiction by E.M. Jellinek, the godfather of studies on alcohol. Waht happended to myself clearly fits Jellinek’s model from the 1950s pretty bang on. I f I use the Glatt curve(early 60s, Max Glatt, who was still in 90s trying to help alcoholics find a solution to their problem) again my experience fits this model bang on ie my whole life was being destroyed by the drug that I was taking, venlafaxine. Glatt’s model was also the first to chart recovery from addiction. Now theres an interesting point here. What I have observed with myself sicne cessation of venlafaxine is in fact the Glatt curve repeating itself. My life improves as symptoms die down, followed by my life sliding downhill again when nasty symptoms flare up again without warning. These 2 models a considered old and out of date these dates. Undoubtabley they do have their flaws, as all models of addiction have, Beethoven’s 9th symphony is 200 hundred years old an is still the most amazinf piece of music anybody has ever written, just because something is old does not mean it is out of date or irrelevant. The point here is that my experience with venlafaxine fits these to models of addiction pretty bang on.

    Lets use a later model, the model that gets referred to as Thorley’s Balls, 1980 I believe. In Thorley’s model addiction is defined by consequences of the use of a particular drug and the impact on the individuals life. In my case every aspect of my life was being severly imparied by my use of venlafaxine, so in this model I was clearly addicted.

    So with my own meta analysis of my experience and how it fits with various models of addiction in only the ‘dependence syndrome’ model could any case be made that it didnt constitute an addiction and with that mdoel I would say the case for what a GP writing in the sun newspaper a few years back referred to as ‘not real addiction’ is pretty flimsy. By the way this GP writing in a national newspaper claimed it was not real addiction by pointing to differences between SSRI dependence and other drug addictions such as heroin, smoking and alcoholism. A fallacy I would say as there is clear difference between addictions, smoking has very significant differences from alcoholism. This does not mean that smoking is not and addiction and vice versa. Professor Healy has pointed this out previously Ibelieve, if SSRI dependence doesnt fit the criteria for dependence in the dependence syndrome model, what that is really illustrating is the flwas in the dependence syndrom model. All moels of addiction have serious flaws in them, resulting from the fact that what we term addiction, that condition that we have all heard of, many of us have experienced and like love is obvious to the beholder is rather difficult to quantify scientifically-result; flawed models. There all good useful models the ones that I have mentioned, but there commonality is that they are also flawed. What you will find is that the stenghts of one model are the weaknesses of another, bit like human beings really.

    One final point on dependence. 3 months after starting venlafaxine I was walking down the same hillsdie at 8.30am on my way to work. I had just taken the daily dose being the good patient that I was being and I had a light bulb in the head moment. I suddenly realised that I was indulging in addictive behaviour with venlafaxine- I was taking it for the buzz it was giving me first thing in the morning and using it as a pep pill. You see it boosts adrenaline levels. Now my adrenaline system is pretty developed after at that point 25 yrs of heavy duty athletic training. It’s fair to say given my sporting interest that I could be classified an adrenaline junkie, although I prefer the endorphin buzz from endurance these days. I did now agree with being put on this drug or with GPs view that I was severely depressed. Instead I persisted in taking this drug beyond 3 months as it was way more effective than caffiene for getting me going in the morning and I was enjoying the rather powerful buzz that would hit me within 5 mins of taking it. I clocked my own addictive behaviour with regard to venlafaxine ina moment of clarity. I then made the mistake of dismissing this moment of clarity as nothing to worry about as anti depressants aren’t addictive. I hadnt questioned the accepted wisdom of the medical profession. 3 momths later I could not function if I missed a dose. 6

    • I’m not sure it matters about the ‘expert/specialist’ label – I’m happy with either. My wish is that they would all sing from the same hymn sheet!
      As for your ‘label’ of counsellor – I think you should be proud to call yourself one, after all you do listen to people and support them through perplexing times that is the role of a counsellor.
      I am a retired teacher. There was a time when the ‘in – phrase’ was to call yourself a ‘creator of an environment for learning’ rather than a teacher. I hope that I did ‘create an environment for learning’ as, hopefully, that is what a teacher does!
      Good luck with your role as counsellor – greatly needed these days.

    • Pretty much agree with you. As for a way forward, making use of your physical capacity, would you consider trying short, fast uphill intervals (say just 4X100m up that same hill with walk down recovery) every morning? – enough to induce a feeling of achievement but not so much that you get exhausted – my theory being that hard-but-brief anaerobic exercise floods “the system” with every sort of neuro-active chemical and occupies the synaptic sites otherwise colonised by the exogenous stimulant. Time (not sure how many weeks) then needed to re-set the way the cellular membranes habitually respond so that they stop “preferring” (sorry about the shorthand anthropomorphic explanation) the Venlafaxine or its metabolites. My “belief” being that irrespective of explanations of addiction as social or behavioural demands (which may well apply too) there is a fundamental physiological effect reducible to biochemistry.

  6. ‘Our dilemma’ can become anybody’s health nightmare’.
    When the hardwire has been messed around with, there is no telling how far the extent of the damage has been caused.
    Everyone should know that there are no test to prove what damage has been caused.
    If people are left with some residual issues, no one can downplay the extent of one’s condition.
    I wish I could wave a magic wand and wish everyone’s suffering/condition/ailment away.
    We can talk until we are black/blue in the face however, if no one deals with an ailment/condition, they would not have any idea what many have to put up with.
    Before anyone judges, they just have to try to understand what it is like to cope with symptoms, day in /day out.
    Many medicines are considered ‘God sent’ because they have supposedly assisted many with their condition.
    I wonder about this because I have noticed some peculiar personality traits whilst some are on this medicine.
    Aggression, undesirable behaviour, delusions, personality changes, unusual ways of thinking etc.
    I think the minority who have suffered from these medicines need to challenge the medical system.
    What happens to a minority does not necessarily mean that it eventually will happen to a majority?
    It most likely impacts them in a different way.
    The mood disorders mentioned above, are a classic example of how the subtly impact many.
    I believe that a lot of individuals who have been impacted by medicines, wished they never ‘popped’ the lethal ones down their throat.
    How does one draw a line in the sand and differentiate between, neuroses or residual?
    Just by how the person feels.
    If they feel like something is not right, people in the medical profession should listen.
    There is a common theme amongst those who have been impacted by these medicines and it’s about time we are taken seriously.
    Many who speak the truth will be ‘mocked’ because we ‘go outside the norm of what is considered acceptable’.
    If the negative clinical data is omitted, how can anyone make sense of patients issues at hand.
    Listening and understanding, are basic fundamental tools to establishing empathy towards our fellow beings.

  7. I completely understand and can totally empathize with the people giving testimony, on this site especially, regarding the responses they get from their doctors for disclosing concerns about adverse effects of prescribed drugs. Yes, doctors discount most of what a patient relates as her own perception of a new symptom — when linked to *treatment* the doc prescribed. There is a knee jerk reaction from a doctor–, something I have witnessed countless times. I see the reaction as a need the doctor has to re-establish her authority and reiterate the professional boundary lines as:” I am the expert, you are the patient paying me for my expertise. ” Yes, I understand — but only as a witness to something that has never made sense to me:
    Trusting either ghost written professional journal articles about the results of RCTs, or relying on clinical trial evidence that can NEVER be matched, or duplicated in one’s own clinical practice setting- defies everything that defines the practice of medicine.

    Really? A 6-8 week randomized clinical trial is the bottom line authority — on what, exactly? The drug performed better than placebo per measurements gleaned from check lists administered by who knows who? No sudden deaths occurred upon ingestion of the drug? I tried to frame some questions around these concerns of mine, using humor to avoid sounding too threatening to the doctors I queried, who were all cheerleaders based on RCT results– before they had seen a single positive result in one of their own patients. I bombed.

    But– I continue to argue–

    There is so little relevance of merit in the format of a RCT for a doctor to transfer to her patients– and yet, anonymous people consenting to participate in a study are more credible than the patient telling her doctor what’s been happening since she started taking –*that* drug. Well, maybe it’s not just the participants in the trial so much as the designers of the trial, or the authors of the article- that have supplied compelling evidence – that justifies “ignoring the self reports of patients”? Oh– come on!!

    I am definitely not the only nurse who has gone *slightly* mad trying to figure this out–, challenge it, shed the light of common sense on it while looking for other signs that what appears to be a , *spell bound* physician might pose a danger to self and others. This is the most innocuous way I can think of to say that in effect, this behavior of doctors — which has become pervasive and intractable, is bat sh*t crazy.

    The real test, or the occasion for a drug to really be *on trial* is in the clinical setting where patients and doctors *together* determine the benefits and the risks of any given drug. No where else does the safety and efficacy of a drug matter as much. In no other context is treatment accurately assessed and meaningfully adjusted–. This context does stipulate *a relationship*– so, in the wake of realizing that doctors are apparently adverse to considering their relationship to their patients as the one and only link to evaluating any treatment they prescribe– WE have to wonder: 1) what has replaced the primary function performed by a doctor?
    and 2) what has become the sole purpose for consulting a doctor ?

    Possible answers-1) Smarter, more sophisticated experts – make time consuming, sometimes difficulty ridden patient relations obsolete.
    2) We consult a doctor– an accessible middle man to hook us up with the- latest magic bullet.

    Our doctor does not know what he does not know. In fact, there is virtually no way he can know what, if anything relevant to his patients, came from the RCTs that put the drug he will prescribe- on the market, in the first place. But, We know what our doctor is not saying. Because it is so obvious she is tap dancing around stating the simple truth: “I don’t know whether this new symptom/problem has resulted from the drug I prescribed.”

    And that is exactly how doctors are harming us all– by refusing to admit that the relationship he develops with you, and the information that he needs in order to determine what exactly is causing your *new* problem IS his duty, obligation and primary function as you doctor; refusing to admit he does not know , is tantamount to him refusing to betray the *experts* . These experts just happen to be the furthest from understanding you as an individual and least likely to consider your personal experience relevant to the important work they are doing– to keep your doctor informed of the latest treatments…. and so on, and so on.

    A song by David Byrne/Talking Heads, written and performed in the 80’s comes to mind- the title is “What a Day That Was”– and the pertinent lyrics go like this :

    “So, you feel like you’re in a whirlpool;
    You feel like going home;
    You feel like talking to someone
    Who knows the difference between right and wrong.”

    Fortunately there is RXisk — and Dr. David Healy–Safe havens, where *you* are considered the expert and nothing you say will be perceived as crazy.

    Together, we will sort this out.

    • I quite honestly think ( here in the UK at any rate) that the right to prescribe antidepressants should be withdrawn from GPs. They willingly prescribe an antidepressant but suddenly, when the drug reacts in an ‘unconventional’ way and you need their support even more than you did in the first place, they refer you to the CMHT who then do their best ( we hope!) to undo the mess that was created elsewhere. From then on, every time you see your GP, they appear to be totally in the dark as to how things are going for you as regards the meds. they thought were great for your condition and are quite happy to have a grumble about ‘lack of communication’ between services.
      Therefore, to level the playing field a little, why not make a rule that IF your GP prescribes the drug then they must continue your care whatever the circumstances; or IF your GP is not comfortable with his own judgement of your case, he must urgently refer you to CMHT with a FULL REPORT of your condition as it seems to him, and a request for support ( for him or for you) so that the full picture continues to emerge and your own faith in the system is sustained.
      We, locally need not worry unduly about such a situation as from April we won’t have a GP – that’s over 20 000 of us left high and dry. Oh, I forgot – the local health board ( at present in special measures by the way!) is going to take care of us DIRECTLY, no set of GPs in a cosy practice for us any more, oh no – a nurse ( I hope the ‘a’ was a typing error in the local press) and a GP whose’s support she can call upon, are going to ‘do it all’ in a holistic setting, drawing upon local charities for support. Where is this to be we all ask – they haven’t a clue yet, no building has been earmarked. Yes, we are talking about the changeover happening on the 31st. March 2016. Wish us luck as we’ll definitely need it!

  8. In my surgery mary we don’t have a named gp you just see who ever is available and when you do get to see someone they’re in such a rush they don’t even take their eyes of the computer screen before your times up and you’re out the door. You could be a cardboard cut out sitting there and they wouldnt even notice. I don’t bother anymore I just go to dr google to get my diagnosis and tell them what’s wrong with me and if I have any queries with medication I do the same. I do feel for them though you can see their rushed of their feet but how can people like us be noticed when the system is overloaded and at breaking point. We don’t stand a chance when complaints like ours are unrecognised medically either. All I can say is thank god for rxisk and google where would we be without it.

    • Ours is more or less the same – you have an appointment with whoever is available. Our named doctor left the practice a good while ago! Our son, however, manages to get to see his named GP every single time – mainly, I suspect, as he’s the one who prescribed Seroxat for him all those years ago.
      Lately, the situation there has become dire.- only one GP remains who is part of the practice. A second GP (our son’s as it happens) retired a few months ago but has stayed on so far and another three locums are on rota plus a couple of practice nurses.
      There are 12 doctors’ rooms plus 2 nurses’ rooms. If they were able to recruit more doctors, it would be a fantastic practice but,as it is, you phone for an appointment and get one a fortnight ahead. If you then suggest that your need is rather more urgent than time allows, you will have a call from the nurse who, if she sees fit, can squeeze you an appointment that very day!
      How they envisage this ‘walk – in’ system will work is beyond me – with just one GP as a support. The press release states that only those registered with the practice will be seen. We are a coastal seaside town who then will treat a sick tourist? Maybe they’ll toddle off to the next large village – oh, wait a minute, that practice is disappearing too! All that’s left is A&E or ‘out of hours’ GP service at the local hospital. They are already unable to work within the waiting time target in wintertime; in the tourist season it is bedlam there – waiting times can be up to 8 hours quite regularly.
      Dear Betsi Cadwaladr would hate to find out that her name is attached to such a hopeless mess I’m sure!

  9. I come from a different perspective.

    The rural surgery was pretty fit and, at the time, you could walk in, there was no appointment system.

    We had the new owner, who was Indian, who employed a p/t associate who was given free accommodation in our village. The waiting room was usually on the side of empty, and, whoever was sitting in there you knew, and there were lots of ‘hello, how are you’ with great laughs as obviously they said ‘och, fine, you know, Annie’.

    Too much time on their hands led to the laziness, I had to endure.

    The ‘unrecognised medical symptoms’ led me a merry dance, but, as I experienced it all again the following year, the ‘medical’ symptoms were then recognised.

    It all became such a cheap shot at the ‘cover up’ which I have pursued with them and the more I dug my heels in, the more feeble was the response.

    Feeble, as in “do one”, Annie.

    I “did one”, then I “didn’t do one”.

    You can disappear within the system and no one bats an eyelid.

    We have to put the “recognised” where it belongs and stop these doctors being so slap happy.

    It isn’t fair, it isn’t just, it isn’t anything remarkable to lose a life to a-d and benzos…it has become ordinary, power for the course, and, the doctors get away with it..time and time, again..because anyone in the system you think you might complain to has the same mind set as these doctors.

    Where we go from here is anyone’s guess..I am currently ‘dealing’ with doctors on behalf of my 95 year old mother, and, it’s the same old stuff I heard in 2002.

    I just shake them up a bit; now and then…they don’t like it.

    It’s almost like dealing with a branch of society completely out of step, a closed shop, a den of iniquity.

    At least, we know how it ticks, now..

    In the Nursing Home a great girl/care assistant, told me quite openly her gp had just given her an anti-depressant for her hot flushes, and she chucked them in favour of looking stuff up herself on the internet….as she is not depressed..

    Clever girl, at 50, she had sussed it out for herself..I said nothing, there was no need..

    • Annie, I too was brought up in a rural (Welsh) village and recognise your description of ‘a rural practice’, I feel we could say that there was also ‘a rural practise’ in those days – that being that the chat in the waiting room was ‘healing’ in itself and being known personally by the GP (after all, wherever we went in the village, he or his family would be there too) meant he’d no need for your notes or a screen(unheard of then!) to gaze at while you reeled off your symptoms. ( In fact, as I had recurring ear infection problems, I often came away with more than I attended for since, whatever my ailment, his opening words would be “let me see that ear”. “But I haven’t come about that doctor, it’s my (whatever). “l’ll see to that in a minute, first things first – wow, you’re in pain with this ear, we need a course of ……. . “no pain there it’s my …..”. ” You must take care of this ear or you will , very likely, have severe hearing loss on that side” – and so it went on and I’d end up with meds. for two ailments rather than one! He was a very caring GP – but all the ‘ear pampering’ still resulted in inner ear damage! These days, they might ask you to return in 7 days for test results only to ask you “What can I do for you today?” and give you a glazed look when you explain!
      To be serious though, don’t you feel that these days, generally, we run to our surgeries for far less serious matters than people did then? There were ‘remedies’ (so called!) for allsorts of ailments and really children were rarely taken to the doctor. Also, of course, if the home-made, centuries old, traditional cure- alls had failed (I’m beginning to sound as if I was brought up in a coven here), then the doctor would be called and out he’d come at any time of day or night and tend to the sick.
      To jump to the present, you are spot on as regards ‘losing a life to drugs’. The look you get ( not just from GPs but also higher up the pecking order as you say) says it all. To me , it’s saying ‘stop being so concerned about suicidal thoughts – it would be one less on our books’. I’ve had ‘you have to let him go’ ( meaning become independent) when he’d already lived independently before the ‘problems’ set in and also that ‘these conditions ( referring to their diagnosis of BPD) are just a nuisance. My reply to that one left him feeling rather more than ‘JUST a nuisance’ I can tell you!

  10. It is great to see stories like the one above.
    I believe that patients are beginning to realise that they have choices.
    Trust is going out the window.
    People have more information at their fingertips, than we ever had.
    People can make better informed decisions and not believe everything that is said or everything they read.
    They will be much better informed and will not leave things to chance.
    We should not have to walk on ‘time bombs’ waiting to explode.
    Despite doing so much research there will always be information that we can never get our hands on.
    This is why this website is so invaluable/priceless.
    People gathering together to tell their stories, in the hope that we can help others is the goal and empower each other.

    • Indeed Carla. It is so easy to just give in for a quiet life, especially if you are the sufferer, and just take the increased dose or whatever else is offered because, after all they should know what’s best. As a carer, we are slightly removed from the severity of the situation and are therefore seen as a far greater danger to the system. I am often asked by friends and family how on earth I keep going with all this ‘fighting the system’ or ‘fighting for the rights of the individual’ – my answer, quite simply, is – I know I’m not alone in the fight and, as you rightly say, this site gives us a platform to at least share with the like-minded – who knows, maybe one day our ‘truths’ will become obvious to the powers that be!

  11. Thank you, Mary.
    I have had the privilege, Mary, to come across some exceptional clinicians.
    They listen and work around the needs of those who are under their care.
    When you think you have no one on your side, out of the blues, some caring soul enters your path.
    When you come across an outstanding clinician, it is like finding a ‘pin in the haystack’.
    They get you and you get them.
    I am glad you try to do your best.
    It is exhausting, challenging and time consuming however, when you come across those clinicians who care and listen, you know that you are indeed, very fortunate.
    All the best to you and your family, Mary.

    • Thank you Carla. When you do find the ‘listener and believer’, it is then that your blood starts to boil about the attitude of the others. Some fail you because they struggle to understand the situation – that I can forgive. Some fail you because they have a set opinion which does not fit your case – they just want the carer out of the way so that their opinions are not questioned. To my mind, they are the harmful ones – harmful to your case; probably excellent for a straightforward psychiatric case. There is a lack of compassion about that group which alienates both patient and carer. Luckily, we are now in the ‘shared care’ of what you call ‘an outstanding clinician’ which means that our hopes for 2016 are far greater than they have been for many a year.
      To anyone who reads this – I wish you a happy new year and may we see an escalation of the excellence we saw this year in the field of ‘safer medicines for all’.

  12. Mary, what makes you think I take meds?
    I don’t touch any of those poisons.
    They nearly cost me my life.
    In the near future, some meds will become obsolete- can’t wait for this to happen.
    We underestimate the healing abilities of our bodies.
    Once damaged, we can do the right thing by our bodies.
    It takes time, patience and being very kind to yourself.
    I know what is best for my body.
    Many fail to listen to their gut instincts because they trust those who know best.
    Sometimes they don’t even know because they don’t have all the information.

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