Editorial Note: This request came to RxISK through Contact Us, last week. It went out to several of the panel who contribute to our responses, some of whom have qualified in medicine and some who have qualified by going through the medical system. There was no consensus among us about how to respond. Beneath the dilemma there are some notes toward a response.
I’m 48 years old and have suffered from mental health problems for most of my life as a result I believe of growing up in a dysfunctional family – alcohol, violence and emotional abuse were par for the course.
I started taking antidepressants in my 20’s beginning with Prozac. Then various others over the years as each time I reached a plateau and symptoms of anxiety/depression would creep in I would change to another brand.
The last one I was on for approximately 8 years was citalopram. Even while on this particular med I’d have bouts of anxiety and depression and spend countless hours in bed. Not to mention side effects of unnatural weight gain and diminished sex drive.
My mental health issues have been such a sad curse on my life interfering in relationships and employment. The latter reducing my financial status thus leaving me to rely on the health system where I live. Going private was way beyond my league on a weekly basis.
The public docs weren’t very good and there was endless counselling from novices.
Last year however I discovered a renowned psychiatrist who was offering a part time service. I wrote to him, he saw me and insisted that I should come off citalopram as he protested the harmful effects of these drugs and how they never should have been brought in in the first place.
Weighing up the pros and cons and from my own experience I agreed and was willing to start the process as I felt he was the expert and I had his consent.
As he was only operating a part time service and was in demand, he wanted to pass me onto a friend of his for counselling whom he highly recommended and could see me on a weekly basis. I began the weaning off process. I finished citalopram in early June having gone through horrendous physical symptoms.
Now depression and anxiety have kicked in along with night terrors, palpitations and suicidal thoughts. I can barely get out of the bed to use the bathroom and am suffering like a wounded animal. The tears are incessant and I’m reduced to a pitiful existence.
I don’t know what to do and I have very limited support given there’s 178 hours in a week where I’m struggling less one hour where I see my counselor.
My psychiatrist is no use to me and doesn’t want to know. He digs his heels in on his stance that nobody should be on the meds, yet he is not lying like a wounded animal.
There is no one I can talk to or a helpline where I can speak to people who have or are currently on this road post antidepressants. All very fine for the ‘come off’ them brigade but who’s around to help me in this current crisis.
Please can you advise as to what to do? I mean my system should be cleaned out by now and my brain making its own natural serotonin, would that be correct? So is this my chemical makeup and am I just doomed to a life of misery? Should I go back on the pills after giving it my best shot at coming off even though they don’t always do what they say on the tin and not to mention the heinous side effects? Can you help?
So in a situation like this there are two issues – what is going on and how best to help someone survive if we don’t know what’s going on or if the message is grim.
In terms of what’s going on with antidepressant withdrawal, we just don’t know. After taking an SSRI for this length of time, and given the indications of dependence from K’s post, no one is ever going to start producing serotonin normally ever again. These drugs can and likely have destroyed some nerve cells, probably mainly in the periphery, perhaps centrally also. There is no known way to fix this situation.
It’s no consolation to K to be told he probably should never have been put on them in the first place. The drugs have a place but it’s not in patching up difficult social circumstances. Counselors, and psychotherapists are right in this, although they often ask someone like me to prescribe an antidepressant when the therapy doesn’t seem to be doing the trick quickly enough.
It seems pretty certain from what he says, K is not suffering from not confronting issues not confronted twenty years ago. Taking antidepressants for twenty years can also leave a person ill-equipped to handle emotions when they return with all their intensity after an antidepressant is stopped, but it seems unlikely that this is what K’s problem is.
This is probably a problem his doctor knows nothing much about and it gets close to irresponsible to put pressure on someone to come off treatment because you don’t agree with the use of drugs when, because you don’t agree with their use, you know nothing about the damage they can do and can do little to help people handle it.
Interacting with medical systems can be deeply traumatic. Many of the reports to RxISK or on this blog are about the casual or even hostile dismissals from doctors or “health” “care” systems and the recognition the person is on their own. But in K’s case we have an almost well-meaning brush off from a doctor who hasn’t Manned Up to the challenge – this is a tricky point to make when as a doctor I have to concede we just don’t know what we are faced with.
But the medical art, if there is one, is about being able to stay with people in the face of uncertainty and not decide too quickly this is a disorder within them or a social problem. A good doctor needs to be able to live without a diagnosis or a treatment. Needs to be able to recognize that they don’t know what’s going on and that its people like K in predicaments like this who are going to find the answers – if there are answers. A lot of what happens on RxISK is powered by people who have had to live through these dilemmas.
Giving someone the impression it’s their fault if they aren’t coping, their moral failing, is not good for morale.
But it’s also difficult to keep morale going in the face of a permanent problem. Very often we get feedback that RxISK is not helping when it says things may be permanent. Some people just don’t want to hear this message, or at least not right at that time. With a query like this it’s difficult to know where K falls on this spectrum.
Several things can be said. Even if the problem is permanent, or semi-permanent, getting up and doing something will likely be better than doing nothing or waiting for an answer to come from somewhere. If there is a degree of nerve destruction, just as with a broken leg, getting fit and building up compensatory muscles or functions can be a way forward.
While it is unquestionably very difficult for many people in K’s position to do anything, because of the disability drug withdrawal can cause – not because they lack moral fibre – pushing himself to do more bit by bit physically and mentally has to be the way forward. This is not helped if you figure counseling is important or that the only time in the week when things are getting done is during the one hour with the counselor.
But even if you determinedly set about doing whatever you can for yourself and people have worked up to writing, or wilderness trekking, or extreme things, the consensus among the panel here is it can take nine to twelve months to get to a reasonable place.
The question of going back on treatment is a fraught one. It seems counter-intuitive to go back on a treatment that has caused nerve damage to begin with. And at this point for K, three months off treatment makes it unlikely that going back on citalopram would help.
Is it worth going back on treatment to see if he can pull things back from unbearable to discouraging? I/we don’t know. That is we can’t offer K an estimate of how likely it is he will achieve some relief by going back on. Many people in this position seem to get little or no relief by going back on but we don’t know how the percentages break out on this one.
It remains uncertain whether tapering medication is of much help. A number of trials suggest those who come straight off antidepressants do as well as those who taper, but these trials have likely not included many people with problematic dependence. But tapering does do one thing that is useful. It gives people a series of places to stop at and assess whether things are going the right way or not, and if not, they then have an opportunity to stop tapering or to increase the dose again at a point where doing so might restore some equilibrium.
These are all difficult judgement calls to make. There are no right answers in general. Everyone faced with working out what to do will be operating from a different position.
It would be great if we could channel the struggles people go through and the insights they arrive at from enduring situations like K’s into a broader effort to put the system right – but even a crusade like this is not the right thing for all.
That said, a form of protest invented in Ireland centuries ago, a hunger-strike outside the residence of the person you have been injured by, is a better option than suicide. For all we know extreme starvation might produce benefits.
Editorial: There is a parallel series of Go Figure posts about finding an answer on the systems level to treatment induced injuries.
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.
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.
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.
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.
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?
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..
Keep this leaflet. You may need to read it again.
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?
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.”
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.
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.
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.
What kind of irreversible damage? From what medications?
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.
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.
A Comment from MIND:
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.
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.
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.
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!!
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?
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?
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.
Rcpsych seem to have rather a lot of confidence in the Doctor, mentioning the Doctor no less than 6 times in this cheerful movie lasting 2.22 mins
Where is Rxisk?
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.
“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
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.
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.
Like kenny I have been put in that awfull position my antidepressants were taken away from me after 25 years of continueous use the doctor under my care stopped all medication that I had been taking for about 15 years over night to replace with a new one he then started me on a roller coaster to hell placing me on another for 6 months then adopting the same protocol and over the next 18 months 6 to 7 more meds were tried using the same protocol the damage to cns is horrendous . Like so many others I have been harmed by a drug that was first given to me for a chemical imbalance which was not addictive and had no withdrawels we all know now that not to be true my brain has adapted over the years to these poisons to a altered state that I truly don’t know if it will ever return
There are so many support groups on the internet for people like me who have been harmed many are wanting to come of their meds some are in a good place feeling well so want to see what life is like with out them some of them have hit tolerance and are desperately trying to find relief and are suffering worse symptoms than what they originally were prescribed them for
The dilemma is for those that are doing well do they risk a life of misery if they come of them is it better to just carrying on with them and living a happy life or run the risk of being harmed all people that take a phyciatric drug have had a altered brain structure and so when they come of there will some discomfort for some mild for others not so
I have been a member of surviving antidepressants for a few years and it has helped many people but it has flaws those people who want to quit their meds who are in a good place and are advice to reduce using a 10% rule which is a good idea and use long holds when things get tough but many go there who are in a pretty bad state who have already stopped or have reduced their medication far to fast and are suffering severe withdrawels for them it’s a different ball game for some it is suggested that they reinstate a small amount to help them stabilise this can be very probmatic in many ways I am a member of other groups where I have come across a lot of members who belonged to surviving antidepressants who suggested this and they are now far worse off than ever also the site promotes that everyone eventually heals and again I have come across members 10 to 15 years out who have not healed and have stated the worst thing they ever did was coming of as they felt fine untill they stopped they say that many people have left and got better that’s why you don’t see many people write up their success stories but actually I have found many of these people still on other sites who left because they didn’t heal and are still suffering and that they found the moderators to be no more than bullies who if you question you are warned and banned from the site
Moving on like kenny I am in that damaged position 5 long years now a reintroduction is out of the question for me which drug would I try after 10 different ones in 18 months if time is my only healer when does it begin I havnt seen any yet only a further decline I have practised everything mindfulness etc there is no diet and healthy life style I havnt tried over the years every single thing that has been suggested on every help forum for coping strategies I have implemented but I have no relief I can’t take supplements as I am so sensitive to anything so what can people like myself do it has taken from me everything I held dear to me my job my family my health and left me a apathetic wreck so do I take one last bite of the bullet and return to a chemical to find even the smallest of bit of relief but if this fails I have to endure another painful withdrawel and risk destabilising my cns even more leaving me even sicker and undoing any recovery that I have been doing in the last two years not that I have seen any .
The last words I have is the true abandonment that has been installed upon me by the medical profession the very people who told me that the drugs were safe had no side effects no withdrawels and deceived me in away to take the medication and now I have been harmed these very people turn me away call me a liar even laugh at me and think I am making this all up attention seeking not trying hard enough and offer me no help , I trusted you and you have ruined my life but not just mine all around me others lives those that I loved are now distant who have suffered the trauma with me and now after years my best friends have drifted away and I am now isolated and alone . Maybe for people that have been on these medications doctors should tell them that they will have to stay on them for life as the suffering that coming of them can and probably will be to much and that they never return to normal I have seen people withdraw from their antidepressant over 4 years the slowest of tapers and they are still very poorly I think the out come for many people who have used these drugs for a certain amount of time is very poor
I have a horrible dilemma.. it would be nice for some to offer some guidance.. I have lingual nerve damage and facial pain caused by a dentist that damaged the nerves in my face.. I was put on lexipro for the depression and cannabis and the pain was well controlled.. then after 4 yrs I went to my dr and asked to if I could stop.. she said yeah just break them in half for 4 days and you can stop.. it was alittle rough coming off but then a month later I started getting pain back in my teeth.. had a root canal and it just made it worse.. was put back on lexipro and gabapentin and it worked ok.. this has been 3 yrs and I incorrectly tapered lexipro and the treatment for my condition is either cymbalta or Amitriptyline. I do have never damage in my jaw.. no doubt.. it was there before I started the medication.. I’ve been off lexipro for 3 months and moving is the only thing to distract me from the pain.. I don’t have much choice but to roll the dice.. any thoughts.. I know the truth about these meds and it is disheartening.. I have had uncontrollable anxiety my whole life to where I couldn’t go anywhere but I also never had counseling or treatment.. I know one thing.. my face burns like acid coming out of the corner of my mouth and burning pain where I’ve had the teeth over filled and damaged by bad root canals.. I’m getting a gene test to hopefully rule out the meds that are the most problematic..for what that’s worth