Stopping Antidepressants: Kenny’s Dilemma

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August 29, 2016 | 25 Comments

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  1. This isn’t really good enough for Kenny.

    Abandoned is the crucial key here.

    As doctors and psychiatrists pretend to help Kenny, he feels lost, dismayed, upset, confused, let down; shipwrecked

    This is not an atypical turn of events.

    When Kenny was honest and upfront about his young history and given medication to cure and solve his problems, was this the correct route for him?

    Having then given him medication and then advised him to come off it, when he had trusted their advice in the first place and then passed him to talk about it to someone else, was this the correct route for him?

    My thoughts are thus:

    Never ever allow anyone in the National Health System/Mental Health arena to be abandoned with their only hope is stumbling across Rxisk.org for assistance

    Rxisk.org is the megaphone

    Abandonment is the most terrifying scenario that exists in today’s pill culture with SSRIs, Benzodiazepines and Antipsychotics

    I was calm, content, happy with my lot dosing off with Paroxetine Liquid [not happy with my lot, at previous attempt] a few mls. at a time. I was coursing, functioning, busy with our previous life pre Seroxat, until that dropped too quickly, too.

    Kenny will be reading this wondering what to do with himself.

    It is too easy for advisors to suggest short walks, creative pursuits, happy thoughts, get a dog and so on.

    For someone like Kenny banged up with an acute medical history of pills, just doing even basic menial stuff becomes like a brick wall of I can’t do it.

    This is the drugs talking because Kenny was a walking talking Kenny, once upon a time even with the not ideal upbringing.

    I do not believe in permanence of any kind.

    If I thought I was permanently brain damaged, from Seroxat abrupt discontinuation twice in two years, I would find it pretty difficult to come to terms with that and it would labour my recovery, so I don’t do that.

    Once you have the confidence, which may take years, to realise that when you wake up and come to you have the choice of what you think and how you are going to operate, without pills, that is the day that you can really think about how you want to spend the rest of your life and how you see yourself at 50, 60, 70

    Kenny needs perpetual understanding and I hope, that some of us can help steer him in the correct direction and let him know that he is another victim of someone who he initially respected and let him down and that the broad brush of mental health is crude, rude and offensive..

    Perhaps Kenny would like to talk to any of us with his thoughts by speaking more and just maybe there might be any one of us ‘commenters’ who can throw more light on his plight.

    We don’t usually and Kenny might start the ball rolling…

    The Blog and the Rxisk are full of the hugely intelligent, aware, knowledgable, kind and caring and compassionate and I am sure will want to jump in here to try and help, you, Kenny

    I can admit to wanting to scream my head off on top of a tall building at the injustice of it all, and, it never occurred to me to perhaps jump off it..so don’t go in that direction, please.

  2. Kenny, I’m sure that every one of us can feel your pain and wish that we could do something to support and help you. All we can do, however, is offer any little glimmer of hope, that we may have experienced or seen for ourselves, which could help you.
    I am an ‘onlooker’ in all of this – watching someone close to me reducing his medications. (not an antidepressant but antipsychotic). My first suggestion is that when people say to progress in ‘small steps’, they have no concept of how tiny these steps need to be! We have learnt that being able to stand outside and appreciate that a plant has come into flower, is a MASSIVE step forward.
    Taking a sectioned tray and arranging objects on it, to do away with clutter on a work surface, takes the day’s total energy amount – and could well mean that tomorrow will need to be a rest day.
    Setting your own goals, in this way – we have found – is the only way to ensure progress. If others suggest their equivalent of ‘small steps’ then you may well fail – that is obviously detrimental to your progress. Asking you to do a ‘little more each day’ doesn’t work either – too much pressure again.
    Sharing your success with another person is good but sharing it with yourself is the best part. Maybe a sticker chart (as used to encourage positive behaviour changes in children) could help if you do not have another person sharing your life. As time moves on – here, I mean months not minutes, – you will be able to look back at the chart and see how you are progressing.
    On a dark day, it is so difficult to feel that any progress is being made – the chart will illustrate and confirm that, actually, you have moved on.
    Your counselling sessions are, obviously, very important to you. Just think of the buzz you would have if you could be explaining your progress to that person. Remember that, with the best will in the world, unless the counsellor has walked in your shoes, then he/she will learn far more about your journey to better health from you than from any textbook read along the way. They talk the talk – but it’s you that has to walk the walk. Good luck. Would be lovely to hear how things are for you along the way.

  3. I would first educate myself about serotonin and how it works, then look at maybe natural alternatives like st johns wort e.t.c. I agree that if you have been on them for over 20 years then I’m sure its caused some damage in that time and it will take a long time to heal. That’s why I think a natural alternative like st johns wort might be good. I would consider that myself if in the same situation, either that or you might have to go back on a low dose of an SSRI again just to get some normality back if you can.

    I also think you should join “Surviving Antidepressant’s” a website where there are hundreds of people in the same situation all helping to support each other through withdrawal. You would be able to get support from people who have been through it or have had similar problems to yourself.

    I’ve been on several different SSRIS and I’m now on Mirtazapine but I share the same concern coming off them completely. The longest I got off them was two months but I then had to go onto something else as I was struggling and having a bad time without them. The worst was the mood swings, you would be fine one minute and the slightest bit of stress you would just lose the plot without any warning. Avoiding any stressful situation is a MUST! in withdrawal BUT that’s almost impossible to do 100% of the time unless you stay at home and never deal with anyone or anything again.

    Surviving Antidepressants will explain about the different windows and waves you go through and the different symptoms you may experience. You can at least get a basic idea of what to expect and make plans on how to go forward and what best method to follow that suits you personally. Educating yourself about withdrawal is very important because you need to recognise the symptoms of withdrawal and know what to expect when they happen. Learning how to force yourself to relax when you recognise the symptoms and to remove yourself from stressful situations when you feel vulnerable is also important.

    Its a long road but with the right education and support you could well conker it in the very long distant future if you take it very, very slowly. We will only know by our own experiences and its important to share them experience with other people who are just stepping into the same problem so it helps them to.

  4. It would seem there are a group of people who suffer a set of symptoms from Ssri use and withdrawal and a group who do not. What are the differences between these two groups? Perhaps one group are or have been cannabis users? Or there is some other statistically significant lifestyle difference between the two groups? Has any analysis been performed trying to identify such or other differences between the two groups and have any conclusions been drawn or suggested by such analysis?

    • Pcng

      There is nothing simpler in life than reading a typical PIL leaflet from a typical pharmaceutical company which describe in some detail what to expect..

      It says:

      Keep this leaflet. You may need to read it again.

      http://www.medicines.org.uk/emc/PIL.3185.latest.pdf

      Added – there are always the options on the Complex Withdrawal section centred on TRP receptors that no-one has commented on and it seems no-one explored. It’s only those suffering from withdrawal difficulties who can establish if any of these options work.

      Don’t we need DBM to clear up some anomalies?

  5. The first thing I long to say to Kenny is NO, this is NOT your True Nature or your Chemical Imbalance asserting itself. You can remember your own initial pain that got you started with “mental health treatment.” And it was bad, but it was NOT like this situation in which you must will yourself to survive each of the sixty minutes of each wretched hour. This is dependency created by the medication, which is NOT over just because you’ve been med-free for ninety days or whatever. It’s an immensely important thing to hear, if he’s to ever care for or trust himself again.

    The second thing I’d offer Kenny is a link to the various RxISK guides to antidepressants, tapering, and distinguishing “return of your original problem” from “withdrawal distress.”

    https://rxisk.org/tools/guides/

    A lot of those RxISK materials are about tapering, and how to do it as safely as possible. They even advise that if a particular “step down” is too painful, physically or emotionally, one should try going back up to the most recent lowered dose that was tolerable, and stabilizing.

    I do not think those RxISK Guides need to be retracted or taken down. I’m well aware that none of it is GUARANTEED to work — and that the movement as a whole needs to face the fact that we have no GUARANTEED solutions. But I do not think that to suggest something that might-or-might-not-work is a sin, or a retreat from Truth-telling as to the problems we face.

    Just the opposite. Kenny deserves every chance he can get. And (though it’s hard to sort out the details) it very much sounds as if he was NOT given any real guidance about the trials & tribulations of withdrawal or advice about doing it slowly. (Lord knows there’s enough bad advice out there, and it sounds like the “coming off specialist” he encountered really gave him short shrift.)

    I don’t think it’s a matter of “not wanting to discuss” the fact that some types of damage may be permanent. No way do I want difficult truths withheld from me as a patient “for my own good.” Been there, done that, paid the price. But Kenny is an individual, and we don’t know yet what “the truth” of his individual case may be.

  6. No one is thinking outside the box here!
    I am still convinced that the drug manufacturers are creating random flawed batches.
    If you have a long list of medicines in your system and you add a flawed med, what do you think is going to happen?
    If you have no medicines in your system the end result could be fatal but not like the patients who is pumped up with so many chemicals.
    Random flawed batches is one area that many have failed to look into.
    Evidence based medicine is flawed, because they only highlight the information that they want people to know.
    The people who have had bad experiences should be more than substantial evidence because they have witnessed and have made a connection to that particular med that the regulators have so conveniently dismissed.
    Why do you think so many people have suddenly died ingesting these dubious meds?
    Think ouside the box.
    I believe we should all be worried, if this is the case.

  7. I think that anyone who suggests tapering or offers guides for taper should include a strong warning that it could result in irreversible damage. The Surviving Antidepressants website tells people to taper and thinks they have some magical formula for doing so that will result in everyone being able to get off of the stuff and eventually being all better. I wish I was never started on meds but I was a child at the time. I also wish I had never tried to get off of them because my life has been forever changed. I wonder if you could try to reinstate since its been just 3 months to see if you can get stuff to calm down. But David is right that it might not work and then you are back on the stuff with all of the problems you have. Awful situation to be in.

  8. Dear katie,
    You are a very wise soul.
    These meds are not what the drug manufacturers and doctors make them out to be.
    In the glossy brochures they should include matt pictures of the damages these meds do to some people.
    You are correct in stating that your life will never be the same.
    Every soul, goes through heartache. We all have to deal with emotional and challenging moments.
    This is what makes us human.
    I believe these meds should come with a handbook of negative experiences.
    It will make people reflect and be mindful of how many lives have been ruined.
    All of us can contribute to this handbook and be a beacon for those unanointed ones.
    It is a brilliant idea and should be given to people without the price tag.
    A brotherly kind of love that all would appreciate and acknowledge as part of their journey in life.
    In the end, we can include safer alternatives that will benefit mental health without the unnecessary or damaging consequences.
    Kenny, needs to find his own path without outside pressures.
    For some, the journey is long and filled with much despair and helplessness.
    These experiences should not be swept under the carpet. They are real and a raw part of life.
    The journey can be thwart with opinionated, misunderstood, unsupportive and uncompassionate encounters.
    We are the minority who fight for a change and having no voice means that the majority choose to deny that such things exist.
    Some of us get sick of fighting because too many people build barriers without listening. They see us as a threat to their billion dollar enterprise.

    Yes, we are breathing but unable to understand the tsunami of destruction this med leaves behind.
    When one falls through the gaps and is left with so many questions unanswered it makes us feel like we don’t matter.
    I can just imagine how those poor souls must feel especially, in countries with no support or acknowledgement of the damage these meds have caused.

    Poverty and malnutrition are something that many of us do not have to endure.
    Financial loss is something that many have to come to terms with.
    Our ability to do what we once use to do is compromised.
    Damage of good health and how it impacts not only the individual but the rest of the family, can be a sensitive area that many don’t wish to talk about.
    Can you imagine what these poor souls have to cope with on a day to day basis, being further assaulted with crippling illl health compliments to these medicines. They have so much adversity to conquer and somehow we understand how their lives are not so much different to ours. The ill health is something we could all connect with.
    We are left on our own devices when many have closed their doors.
    I hope that their fears will be illuminated with hope.
    Food, a home and good health are basic needs that all long for.
    These poor people have so much to deal with.
    On the other side of the coin, we hope that our ill health will be restored the way it was before we ingested these dubious meds.
    I hope that Kenny and other likeminded souls can find that happy medium.
    If an injury is permanent, we all have to somehow accept it and try to move on, the best way we can and sometimes this is the hardest pill to swallow. Others will have temporary problems. We just don’t know who and how they profoundly impact an individual?
    All the best Kenny and if you ever need someone to talk to, I am here.
    Sending you oceans of love, Carla.

  9. Katie what’s the alternative long term? Surviving antidepressants is a brilliant website and has been helping and supporting people for years. Where else do people go for 24 hour support? It’s better than nowhere.

    • It would be helpful if Surviving Antidepressants supported people who had to stay on them either because the risk of getting off was too great or they were unable to do so or do so completely despite tremendous effort. I also think it is reckless to promote getting off of them without warning that damage from the taper could be lifelong. I don’t feel that the site adequately warns. Rather, it promotes tapers no matter what. They just emphasis very slow tapers. When I tried to get support on the site after suffering all of my damage and deciding that the cocktail that I got stuck was where I was going to have to stay, the posts I got were all about tapering. Even though I said I am done and I wish I never had tried the taper since that’s when the nerve damage occurred. And now my life is forever changed. It just seemed like it wasn’t ok to have a different opinion.

  10. Dear Anne-Marie,
    Sometimes, with all good intentions, these websites might not be the best place for some people to turn to.
    I believe that some people would appreciate just having someone listen to them. This is the kindest medicine.
    What might seem to be good advice for one may be someone else’s recipe for disaster.

  11. I’m sorry it didn’t help you K-B-T and I agree they should recognise those who it doesn’t help too but I wouldn’t totally dismiss them either.

    carla I agree some they help others they don’t but for those they do help it can only be a good thing.

    I’m not for or against them but I do feel they still help many that would otherwise have no help at all. Surely that’s a good thing.

    I just recognise that running a forum voluntarily to try and help hundreds if not thousands of people is an admirable thing to do. I respect them even if it doesn’t answer everyone’s problem.

  12. This is where Rxisk becomes even more so important than surviving antidepressants especially for those who do have differculty withdrawing, It has the proffesionals support and advice that surviving antidepressants doesn’t have.

  13. It scares me to think that damage could be permanent. I’m one of those people who tried SO MUCH STUFF before I decided to get onto medication. I did my best with yoga, meditation, breathing, therapy. But once I got onto the meds I had enough stability to research and formulate a supplement and food protocol for myself. I DO wish that I started with my naturopathic doctor first, because I wonder if her treatment really could have prevented me from getting on meds. Anyways, her protocol is helping me with withdrawl at this point, I think. I feel like I’m coming back to life. I have my amino acids, as well as other herbs and fish oil pills that help. I feel like getting vitamin D, cod liver oil, fermented foods, spirulina help with repair. Gotu Kola is a GODSEND for akathesia and leg pain. Skullcap helps with calming and heart racing. Bentonite clay is great for gastrointestinal discomfort. I still feel sad & fatigued most times, but when it’s good, it’s quite good! I just hope that I can fully recover and be functioning. It’s both reassuring and sad to read from others experiences that their meds never helped them function. I always felt that they didn’t have this power, but many sources said that they would. I went into psychiatry knowing that its gonna be tough, and it was and is, but I never knew how awful these doctors are at their job. Also positive thinking crap and emotional processing are key! K, it’s okay to struggle, and I hope that you find a treatment option right for you!!

  14. Kenny’s dilemma is one faced by I guess many, many people. I’ve long been deeply uncomfortable with the message (NOT on Rxisk or David’s blog) that get off the meds, your life will open up again and everything will be hunky dory..and with the sometimes messianic fervour with which people say never ever take these drugs. It is just so infinitely more complicated than that. We all went on the pills for a reason (something took us to the doc in the first place) but Kenny has to manage life as it is now – not as I guess he fervently wishes it might have been, had he not become dependent on SSRIs.

    I’m in the same position, basically. I thought I was doing the right thing, the right way (tapering very slowly off olanzapine) but the physical problems I now have to manage are exceedingly debilitating. I often think – should I have stopped the taper at a small dose and just stayed put? If I could go back – probably. Certainly trying at one point, weeks after I’d finished the taper, to put some of the drug back in simply resulted in acute physical symptoms which laid me flat for 24 hours till the stuff was out of my system. I never tried that again. I can’t rewind the clock – no one can. Well meaning psychiatrists like Kenny’s (the ones we’ve been trying to find) can do more harm than good, as can therapists if people like me and Kenny are left feeling it’s all down to being weak. Not tough enough. Believe me it ain’t. I’ve never fought harder in my life to keep on going.

    Which is why I made a personal decision never ever to give advice to friends about coming off the pills. Mainly because I can give absolutely no guarantee that life will be better – it might be worse. It’s a risk/benefit analysis that individuals have to make for themselves – and basically it’s a gigantic leap into the unknown.

    For me, managing the physical stuff is, as the post suggests as one way of coping, pushing myself to do as much as I can even when I feel so shit I want to curl up in a ball and die. Sometimes, crawling out of bed and clearing up the kitchen is enough to trip me into feeling a sight better. Sometimes a walk, a phone call, mowing the lawn – or a bit of concentrated work on the computer. Weirdly, sometimes getting angry about something…My guess is that different things work for different people and, in the end, everyone has to sort out what works for them..but it does mean a degree of effort that at times seems downright cruel. And I have times when absolutely nothing works. Nothing. All this is hugely exacerbated by a complete lack of understanding from everyone around me except my closest family. But that’s just how it is. I’m being realistic, not fatalistic.

    After all, cancer treatment leaves people physically damaged. Life is never the same again – and people learn in the end to live in a different way (speaking from experience). I’ve had to readjust my life accordingly, both post cancer and post olanzapine which doesn’t mean I don’t get very angry – I do – but for me, channelling the anger into the search to find out what these drugs can do to the body seems more productive? We need the data and all of us here on this site are in a unique position to contribute to the body of information.

    I think acknowledging that coming off the pills can end badly is absolutely crucial. For one thing it’s honest. And without honesty how can people ever begin to cope with the situation they find themselves in?

  15. Dear consumers,
    I am going to keep my answer short, sharp and shiny.
    Whilst trying to come off these meds, please do not think that a miracle can be found in other alternatives.
    It could be dangerous and make matters worse.
    We do not know what will happen when you add other alternatives to the equation?
    It could be very deleterious for many people.
    Listen to your intuition.
    Do what works best for you.
    Most websites that proclaim to help may be the wolves in sheep clothing.
    It may be pharmaceutical companies giving poor advice.
    Remember the meds that got you into the mess and the pharmaceutical companies that lied to us?
    Many have betrayed us and I would advise everyone to be mindful of what they read and hear.
    Too many people rely on information that is not based on a ‘harm free process’.
    No one needs to take further risks if they have no idea what is going on?

  16. I haven’t suffered from damage from antidepressants personally, but my son did. I have however had terrible reactions to organo phosphates in sheep dip, antihistamines, hormones and steroids, and not being taken seriously when manifesting these. Like Katherine, I found that giving my body the best chance to detox and nourish the brain and mind, made me feel more positive, helped me to think clearer in the fog, so I was in charge of my own healing/ destiny, whatever. Kenny writes so well, so he is obviously thinking and weighing everything up. The most important thing is to assure himself that none of this is his fault, it’s the meds. Then, HOPE. There is always hope. Brain cells, we are told, can and do renew themselves. The whole body renews its cells every 7 years (which doesn’t mean to say you’ve got to take that long to get better :)). The mind is an amazing thing – if your subconscious belief really tells you that you will get better, it can override amazing adversities. If you can formulate a Plan, setting out some goals to aim for, write it up, put it on the kitchen wall. Then, embark on a brain healing process. Keep a log of what you do each day and how you feel. See what helps, makes small differences, to build on. This can be useful once you have achieved your desired result, so you can write a book on how you did it, to help others, (and generate some well deserved cash in the process). Of course we don’t know what happens in the brain caused by these meds after withdrawal. But actually, that’s good in one way, cos we are all different and heal differently. So there are undiscovered answers and breakthroughs.

  17. Hi Kenny,
    I was going to write a lot of suggestions but I think checking out Kelly Brogan’s website will really help you. She has helped many people successfully withdraw from antideppressants.
    Good luck.
    Andrea

  18. “I made a personal decision never ever to give advice to friends about coming off the pills. Mainly because I can give absolutely no guarantee that life will be better – it might be worse. It’s a risk/benefit analysis that individuals have to make for themselves – and basically it’s a gigantic leap into the unknown.”

    That’s an extract from an earlier comment by me – because I’m now confronted with a situation in which I have been asked to give advice – or at least some support – to the close friend of my daughter . Of course I will help – how could I not – but Kenny’s dilemma has never been more acute for me, personally. I have never met the person concerned but before I make contact I would really, really appreciate any ideas on my acute worries around:

    1. I’m not a doctor, therefore I have to be very, very careful around any statements about the pills this person has been taking for over a decade (including olanzapine) – and is seriously worried about.

    2. I have to be even more careful what I say about the advisability (or not) of coming off them. If he is determined, then I can think of no better guides to withdrawal than those here.

    3. But – do I warn that coming off may not result in the dawn of a wonderful life? That in fact life post drugs might be a challenge at best, or, actually be harder?

    4. I would love to point the person to Rxisk for information and support. But is it possible that the concentrated misery of our stories might just be too terrible? Rxisk has the most wonderful community of contributors, and the empathy and kindness is second to none – which this person might well find an incredible source of succour.

    I am in a big, big dilemma – so any thoughts anyone can offer – very gratefully received

  19. Sally, have just read your comments here. I so understand your dilemma. It is one we encounter on our RoAccutane/ isotretinoin helpline all the time. What do we advise those desperate people who call us with worries about possible drug damage? Do we offer hope? Yes, of couse we do. But do we know for certain? No, how can we? At the same time, it helps to have knowledge, and to feel you are not alone. There just maybe something written here, amongst these Blogs, that sustains, enlightens, helps. Better to know the worst and the best, than to remain in terrifying ignorance. I’d recommend this person to read all they can, to at least feel supported by us all, and not alone. To know that they are, in no ways, mad. They join the ranks of us all, fighting for justice, who understand. There is no easy way through their suffering, but at least they will know they are not alone. Encourage them to join us, to write about how they feel, to take some comfort in our solidarity. That would be my advice, for what it’s worth.

  20. It’s a tough one. Especially when I visit my USA friends and family and see how many of them are dependant upon these drugs – for whatever reasons that led them to complain to a doctor. I bite my tongue, as they say they need their drugs. (though I may caution them that long term effects are extremely disruptive to health)

    I see that the journey off is a difficult one, and not to be hazarded by the faint of heart.

    Kenny is actually a reverse victim. Many of us got put on the drugs by someone knowing “what is best” for us. Kenny got taken off the drugs on the same pretense – did he determine for himself that this was what he wanted? Or once again, did the all-knowing doctor invoke harm upon him?

    In Kenny’s case, I have nothing to offer but hope. The experience I have on SurvivingAntidepressants indicates that 90 days, or 3 months out – is a very short time to expect decades of drugging to heal. The drugs do make changes in our brain, but I’m a firm believer in neuroplasticity – the brain can change itself.

    I would not necessarily advise Kenny to reinstate a tiny amount of the last drug he was taking (that is common protocol on SurvivingAntidepressants.org), but I can firmly say that the more he engages with simple pleasures (call it mindfulness if you like) – the more he is likely to re-wire his brain and heal.

    The problems of 30 years ago are likely gone, if maybe buried. Maybe they need to come out and be dealt with, but maybe not. Sometimes digging around is counterproductive.

    The thing which has helped me most is “following my pleasure.” This sounds hedonistic, but it is not. It is mindfulness, engaging the senses, engaging social connections, enjoying my body, art, music, and friends as much as possible (even when my body doesn’t feel good, or the social setting is awkward). Then, in the balance of things, it is easier to see a way through. What is pleasurable shows me a way to be healthier.

    A regular practice, whether it is journalling, tai chi, yoga, art, or therapy – is key to finding those places of pleasure. At first, in the haze of drug numbness and pain, those moments are tiny. The fur on a kitten, a ray of sunshine, a deep breath, the blessed relief of a magnesium bath. Over time, they expand, and like pearls on a string, they join together to form a more cohesive, more positive way of viewing the world.

    But it always starts small. I don’t think that drugs or herbs are the answer (though there are things that help) for Kenny, even if he has to reinstate a tiny amount. The answer lies within his own ability to find pleasure, and follow that pleasure back into living his life again.

    If his suffering is unbearable, perhaps a new doctor is in order. Only he knows how much he can endure. But the long term key to healing long term damage (I cannot call it “permanent” at just 3 months – or even 3 years – out) is long term patience. Waiting is the hardest part of healing from antidepressants.

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