Editorial Note: This post is by Sally Macgregor.
I left a comment on: Stopping Antidepressants: Kenny’s dilemma, which contained this statement:
‘I think acknowledging that coming off the pills can end badly is absolutely crucial. For one thing it’s honest, and without honestly how can people begin to cope with the situation they find themselves in’
I also said that I had a personal rule: never give advice about withdrawing from the meds to friends because I have no idea how it might pan out. It was always a gigantic leap in the dark, and the risk/benefit equation around getting your mind back versus possibly not being able to tolerate withdrawal or ongoing legacy effects which might be worse than the pills is very complicated. I had decided the decision to get off the meds was for the individual, not for me.
Now I find myself unable to stick to my ‘keep quiet’ rule. One of my children has asked for help for a very close friend, whom I’ve never met and didn’t know existed. This person’s situation sounds uncannily like mine: a breakdown, a long period of appalling depression and many, many drugs. He is now very anxious about what the drugs are doing to him and would like some advice. I would like to help but
My dilemma is this:
But, do I warn him that coming off the pills may not be the start of a wonderful, brave new drug-free life? That expecting, as I did, that the person he was before the breakdown and the treatment will just re-emerge unscathed might not happen? Particularly as he’s been on all the drugs for a very long time so the chance of some permanent damage is probably quite high.
It seems obvious to point him to RxISK for the best information available – but is it possible that the concentrated misery of all our stories will be frightening? Too terrible.
Alternatively, RxISK and David’s blog have the most wonderful community of contributors, whose empathy and understanding and kindness are simply second to none. Outstanding. He might find deep succor here but he might also feel despair.
Offering to help someone brings huge responsibility. I think it’s vital to think about these awkward questions before embarking on giving someone a helping hand, because as soon as you make a connection you are involved, and to cause more harm by not thinking things through would be a bad ending in itself.
I have had one amazing success story and one Fail.
A new caravan friend, OU lecturer, divorced, mother of three boys, around 53, was put on anti depressants by a lady’ very very nice gp who was wholly supportive’..
It was Sertraline. .
To cut a long story short, we had chats about anti depressants, in particular, Seroxat.
I didn’t go too far in to litigation, but, I did mention clinical trials and what happened, in particular, with Study 329. Plus, the huge array of side effects..
Initially, she was all for taking the pill as she really trusted her doctor to ‘increase her serotonin’..
Being a hugely astute woman, who I watched suddenly drinking loads and becoming ridiculous and also having wildly atrocious ideas for her future, being an extrovert, she was quite a handful.
However, as she told me a bit about transactional analysis, basically the ego ie you are dealing with the parent or you are dealing with the child and in the middle is the adult as to how people react to you….quite interesting….I gave her The Pill that Steals Lives to read – which she read in a oner, like me, overnight.
She also watched the Victoria Derbyshire programme.
“There is a man with wisdom” she remarked about a Psychiatrist who took part..:)
This woman is highly intelligent and doing a masters in art history, she is also fun to be with and has read up herself a lot about motivation and what makes people tick.
Are you still on the pills, I asked her when she came up for a w/e.
Absolutely not, she said, after everything you said and reading Katinka’s book which I thought was gripping.
She is back to her normal self, better actually….no more sinking in to the wine bottle, no mad ideas.
A real pleasure to know.
The Fail was pretty awful.
I ended up making myself look a bit mad myself, I could see her doubting everything I came out with.
We didn’t have the same rapport at all.
There is nothing left for me except anti-depressants, she said.
Depressed, exhausted, bored, fed up of fighting…..
This was so different and I was hitting a brick wall as she was not at all receptive and so with this one I backed off as it seemed to me that her mind was completely closed.
Unless I bump into her in the village, sadly Fail with a big F.
But a Win, Win with my new pal.
Don’t give up on Mrs Fail Annie just like addicts it can take up to seven times of rehab before they finally stop. Maybe its just not the right time for her yet.
Gosh! Great Timing, Ann Marie
Wandering around the Co, as we call our new foodery outlet, yesterday afternoon, there she was.
It was quite an emotional moment as she said, I’ve missed you Annie, where have you been?
Big hugs all round.
There was I thinking that I had said too much and there was she thinking, where’s Annie?
Round two, we are starting again.
We have a pool in a local hotel, we have forest walks,
We are going to do things, and I let her completely take the lead..
The P word will not come from me this time until she is ready to divulge any worries.
It won’t be easy as she has primarily financial problems as long as your arm, has had a heart attack, lives in a very small rented apt. currently covered in Royal Burgh scaffolding and drilling and noise and can’t see her way oot of her circumstances………virtually unemployable, she has a streak of rebellion in her as to how she ended up like this.
She has a science degree, feels life has dealt her bad cards.
We are halfway there now, we actually like each other.
“I saw a red squirrel, a heron and a hawk on my walk this morning and this keeps me going” she said.
Brilliant observational skills!
Thanks for thinking of her, Ann Marie
Well done Annie!
All that you say, Sally, is so very, very true. It’s almost a state of ‘ damned if I do, damned if I don’t’ isn’t it? My feeling, as I suspect yours too, is that we certainly have to do SOMETHING.
I spent years wishing that mental health team workers would support my son in reducing/ removing his antipsychotic medications. His health was not improving – mainly, in my opinion, due to his adverse reaction to an SSRI in the first place. For the past year and a bit, he has been decreasing with the support of a different psychiatrist. Things are going well although incredibly slowly.
My wish, then, has been granted – but with that came my next stage of ‘worry’. What if his condition worsened rather than improved? What if he failed in his attempt to decrease? What if the medications ( of which I had been so critical) had, actually, been supporting him all along? What if we ended up with a son who needed more support rather than less? On and on it went – through my own head, kept almost as close as a secret from others!
I am relieved to say that with each reduction, a little more of the ‘real’ person is revealed to us. No massive changes, you understand, but little subtle changes in the ways that he copes with his life now. Still a VERY long road ahead yet, but each tiny step is in the right direction. There was one ‘hiccup’ in the journey so far – but now he’s overcome that one and seems to have gained strength from managing that bad spell.
So, Sally, what do I suggest? I suggest a totally honest approach – that no-one knows exactly how withdrawal will be for an individual; that by ‘taking it slowly’ you mean at snail’s pace – with good long breaks in between cuts, so that stability is gained before the next one; that a reduction may well need to be a way smaller amount than the cut suggested; that the person reducing is the ‘boss’ of the situation – it is their body and they know it better than anyone else!
I would also advice that medical support is essential – as is good support from family/friends. The medical team needs to be prepared to hunt down liquid forms of the medications – they certainly make a massive difference.
Lastly, of course, I would say that the support of RxISK and David’s blog are compulsory for such an arduous task! Of course there are things here that are enough to frighten the unsure but, without knowing all of those things beforehand, the journey could be perceived as a ‘doddle’ – something that it most certainly isn’t! Seeing the ‘real person’ re-appearing is fantastic for our whole family. Realising, himself, that he’s come such a long way in just over 12 months is a massive boost for our son too.
I sincerely hope that, should the person concerned decide to withdraw, you will be informing us in 1,3 or 5 years – who knows how long it will take – that the journey has been safely managed and the end result was worth all the hard work. Best of luck.
I share your concerns about directing the friend to the bad news here. It might be best reserved for viewing in the event that withdrawing from the drugs proves to be problematic.
As for warning the friend that withdrawal might be terrible and life might never be the same, I would not. Instead, I would describe my own withdrawal, and point out whatever differences exist between my case, at the outset, and the friend’s. Such as,
“I was on Olanzapine and you are on Haldol, Ritalin, Prozac, Wellbutrin, Lithium, and Latuda. What I experienced was based on my body’s relationship with a particular drug, and whatever you experience will be based on your body and your environment.”
“Plus, I am over 40, and you are just four and a half years old. You probably have more plasticity, but that might mean that you were more altered by the drugs you are taking that I was. On the bright side, it could mean that you can recover more quickly and fully. (But that is speculation.)”
And if things go badly for the friend, I think we can all agree that being believed is incredibly helpful, for starters. Your being someone who not only believes in the suffering, but experienced it and has survived it, will go a long away. Letting the person know that they should reduce their responsibilities and obligations to the degree possible, not expect much of themselves, and to chalk it up as an accomplishment if they get through a half a day without expressing a desire to be struck dead by God (even atheists say this), will help too. (It would have helped me, anyway.)
The best advice anyone could give to others is one which is based on not harming.
If anyone is suffering or would like to know more information, please direct them to RXISK.
There is so much wealth of information on this website that may be indeed very beneficial and godsend.
Usually, the person/people you are connecting with would benefit from any honest advice.
Every experience is unique.
Usually, the individual(s) concerned, will gather the necessary information and make an informed decision based on what they have read.
A professional who understands/appreciates how these medicines work would be very beneficial.
Sally, my feeling on this dilemma you write of, is that ‘knowledge is power’. Whatever we individually do with that knowledge, is up to each one of us. Time and time again on the RxISK and David’s Blog we read heart rending accounts of suffering, due to various psychotropic drugs. Obviously so many wish they could turn the clocks back and had never taken these medications, but they didn’t have the ‘knowledge’ to make an informed judgment, and, worse still, they were feeling less than chipper at the time, indeed, some were feeling ill and hence vulnerable.
So, like an earlier comment here, I would tell your own story or even just direct this person to your excellent Olanzapine withdrawal accounts, (parts one and two) and suggest they weigh up all the pros and cons and then go with their OWN gut instinct. There are also many good tips across all these RiSK and David’s Blog sites on how to give oneself the best chance, as well as the RiSK guidelines on tapering. Like Mary says, the key in any situation like this is to hopefully have good support, and as you say Sally, these forums are filled with people who care deeply, have suffered themselves, and only write on them because they are so keen to help.
We get a lot of people coming to us to ask for similar pointers about RoAccutane/isotretinoin and we know that for some, currently, their damage to the brain, as it was for our son, can be permanent. When people have to come to terms with this, like him, some end their own lives. Do we spell this out, about the permanent damage, or play it down? We try to suggest ways of managing their symptoms as best they can, distraction, hope, enhancing their basic health with diet, exercise etc, so that they are in the best possible shape, mentally and physically. We assure them that we are ceaselessly trying to find a solution to healing the damage, and that if we can warn others not to take this drug without realising the possible life changing effects ( the skin fades into insignificance by comparison with the mental hell and physical limitations ), then we may have done some good. We stress that there is always hope, realising the plasticity of the brain, and how some brain cells can regenerate themselves.
We were in a seminar yesterday with a group of health service volunteers. One, an exGP wisely commented that if you take these drugs away, you need to offer something in their place. So we have to find a way of getting research done that is not in Big Pharma-funded university departments, and which is not money biased.
It haunts me that one of the youngsters who died from RoAccutane/ isotretinoin, had previously just seen the film, ‘Dying for a clear skin’, (made by the families of two others who had died from the drug). Our son died before the film was shown. But from reading and interacting on acne drug chat sites, both he and the other young man, knew how hopeless things were looking. The problem though was that they didn’t feel any hope. So, like for Sally’s friend’s close friend, HOPE, in my opinion, should be the main message, wrapped in the most helpful information you can find, to offer.
This challenging and hugely important dilemma which Sally has drawn our thoughts towards alerts me to the belief, knowledge, awareness and understanding we are all sharing with each other.
I would start by listening, by accepting and believing.
I would try very hard to avoid letting my anger, despair and contempt – (for those whose arrogance, and ignorance of the dreadful ADRs of the drugs they prescribe stole the soul, health and happiness of our loved one) – from damaging any HOPE that I may be able to justifiably share.
This may be the HOPE that one might prevent such harms to other misdiagnosed souls where survival of our own loved one had been denied.
HOPE of further recovery for those loved ones who have
“partially survived”, albeit balanced with awareness of the inexorable slowness and unfathomable time scale to endure and survive whist we try to both care and rehabilitate without professional help.
I would try to share the fact that they are not alone in facing this iatrogenic expulsion from any normality in future life.
Share the truth: that there is a knowledgeable and empathetic, experienced, expanding army of similarly devastated families who spontaneously offer love and support through websites like this.
For the first two or three years we did not understand this incredible resource.
But above all, we all need fact and facts to counter the ignorance and vindictiveness of those whose prescriptions lead to this wretchedness.
Science fact to replace science fiction.
Study everything, share reference papers, scour the very best websites for every last fact that allows sense to be made of the senseless.
Learn what strength and solace comes from lighting a candle next to a picture or symbol of our lost souls, in the companionship of an army of those of us tormented by misplaced trust in mistaken doctors.
So HOPE, and TRUTH? – Where truth emerges from fact.
I have struggled for days to piece together my thoughts on this brilliant post, so why hit the keyboard now?
Though I have no religion, I try to listen to “Thought For the Day” on Radio 4 in the hope of a moments inspiration to achieve a tiny bit more recovery or rehabilitation that day.
Gospel according to John:
“And you shall know the truth, and the truth shall set you free”.
We live with intense, unremitting fear of further kidnap and further abuse by psychiatry and observe the terror this possibility causes to our own injured soul, every day and every night.
We now know the facts and hence the truth of what was done.
The catastrophic diagnostic incompetences, followed by the cascade of enforced, fatuous drugging, with dreadful cumulative injury.
It is that truth which is the basis of our hope for freedom from fear.
So HOPE and TRUTH perhaps?
I would have given anything to have had someone to talk to who had experience of any drug withdrawal to placate the terror, confusion, loneliness and made to feel like a freak of nature.
The only people I had were the gp and practice nurse who went out of their way to become indispensable to me.
This was completely unnerving with come round for coffee, dinner, stay the night, holidays and walking their dogs…….all I talked about for months turning to years was Seroxat.
Seroxat this, Seroxat that…..why did I end up in two hospitals, why did I give the gp my Panorama videos never to get them back….even years later why did she refuse to come round to visit my daughter who had been dragged along a gravel road with one foot in the stirrup and was suffering shock and bloodied wounds…why?
An email I sent to the gp went unanswered.
“You were there for two years why won’t you help me”
I knew something had gone terribly wrong, of course it had, why else would I be in two hospitals and the months bed ridden, anorexic and drugged to oblivion..
If only someone had come along and plucked me out of this surreal situation……..
SO right Annie, what a difference it would make for so many, like yourself, to have had someone caring and honest to talk to about these meds and withdrawal. Instead of the embarrassed blanking and running away by those supposedly ‘in the know’ when trouble struck. I think the absolute worst part of all you describe (and it happened to our son too) is to have let the patient think their reactions are peculiar to them, and their own fault, when the advisers know perfectly well the meds have caused the damage, but they keep distant cos they really don’t want to be associated with it, or the suffering individual.
So, I think Sally should spell it out like it’s been for her, and for many of us. Like you, Annie, there isn’t a day that passes that I don’t wish with all my heart, that we had found these Blogs and showed them to Olly. One can never know for certain, but I feel sure he’d have gained so much strength from them, and carried on fighting for recovery. Hats off to all of you.
Experience surpasses theory.
Anyone who has experienced a nightmare with these medicines and has got themselves out of hell, in my opinion is qualified to give beneficial advice.
You don’t have to be a professional to help someone.
If it comes from the heart, you know someone is sincere about healing.
A few contributions from the Twitter-verse:
From Chrys Muirhead:
I share my experiences with others; don’t advise, say what worked for me. To give encouragement: I tapered Risperidone, Venlafaxine, Lithium.
Taper at 5-10% per month, hold as long as you need. Compliance with mainstream medical advice could be a one way ticket to hell.
We need a data base of health practitioners who are educated in withdrawal and tapering. The root problem is the blind is leading the blind.
Finding educated health professionals who don’t drink the Pharma Kool-Aid is extremely difficult. Patients are forced to comply.
You were misled, the drugs you took were very addictive. Your recovery could be long and painful. Don’t lose hope, you will Heal.
GrittyMort – in our son’s experience, 5-10% per month would have been an absolute impossibility! Maybe depends on the medication from which you are withdrawing?
Very well put Carla. As with everything in life, you can only do your best, and with a good heart. Sincerity and honesty is so important. Advice genuinely given without any strings, back watching, or financial connexions to Big Pharma.
Thanks to everyone who has made such helpful suggestions – very much appreciated by me, and hopefully might help others in a similar situation. Keep them coming – they all affirm my feelings about the warmth and thoughtfulness of the Rxisk community.
Thank you Heather – your reply is very much appreciated.
When no one was there for me, I had to rely on myself to survive.
I had to lean very quickly, mind you, with an arduous ‘trial and error ‘process, of what worked best for me. Eventually, through sheer determination, reading and ongoing research, I made some breakthroughs, although it took such a long painful time.
Heather,I have tried to educate and warn some people about these medicines however, I understand and appreciate very well that some may find the information to confronting to accept.
Understandably, some people may not want to accept responsibility for their health.
They are of the opinion that negative outcomes will never happen to them ~ I use to think this way, also!
When I was very ill, I am grateful that I was in control and able to navigate myself out of a dreadful situation.
I believe that if I had listened to some of the doctors who crossed my path, I would not be here today ~ It is what it is and so I soldier on.
Some people ‘switch off’ when you talk to them about my journey.
Sadly, there are some people who believe that if they are fine taking these medicines, they will never have to worry about case scenarios like mine.
Educating people is important however, when some refuse to listen, we hope that the information shared will remain in their consciousness.
I hope and pray to God that all the people I have connected with experience no harm.
If they know of anyone who may be in a difficult situation, I hope the information I have provided will be of benefit.
David has provided this sanctuary for all who can talk about an experience without being chastised.
I know that all the caring RXISK community will be a ‘beacon of light ‘to those in need of assistance, guidance, answers and support.
Kudos, to each and every soul who have contributed and still do, for the benefit of our fellow being.
Everyone needs a hand when they find themselves in unfortunate circumstances.
Thank you, Sally
Thank you, Heather, for your complete understanding and for telling us so much about Olly that I almost feel I know him. He is very handsome and I can tell by his lovely face on Katinka’s stolen lives what a super nice chap he was.
It was all very well my surgery stridently attacking my personal life without anyone bothering to ask me one question but I had no idea that my constant and unrelenting complaints would bring risible ‘other entities’ in to this arena of profound disdain for the patient.
How can a gp, when sat in the surgery with the practice nurse and the practice manager on receipt of my complaint pick up the telephone in front of them and call the Doctor and Dental Union of Scotland to get her out of this mess.
They immediately backed her up and told her the patient could not complain after one year.
And where were the facts as to why she was calling?
This led to frantic emails to their big Boss running his alternative private medical practice in PEI.
So, off it goes to Canada, my explosive complaint.
And his reaction, a treacherous response by telephone to my caravan telling me he was too busy to read my complaint and when he had had all the facts spelled out by his own surgery.
Then we have the Clinical Director whose consultant wrote a letter to the surgery with the discontinuation advice for Seroxat and when presented with me for a week sees no need to see me, check my medication or even refer to the letter he initially wrote.
Meanwhile the howling, screaming, relentless cold turkey from Seroxat led to my driving home with suicidal ideation and then three days later ambulanced to Glasgow with the horrific aftermath of the violent attack and overdose from Inderal, LA.
And his reaction, a telephone call to NHS Highland to make sure his Consultant was in the clear and he was told he was.
I spent years sending emails and letters to these people with copies of Prescription Lists, GP Referrals, copious Consultant reports, from my Medical Records.
It was all so obvious that dereliction of duty of care had taken place by both Consultant and General Practitioner and Practise Nurse and even the Registrar in the mainstream hospital who after recording Seroxat events asked me if I wanted to go back to the Mental Hospital.
He then copied his fact finding mission with copying the surgery, but, not the consultant in the Mental Hospital.
Even then, half dead and half baked with wounds and lacerations, “would I heck”..
Mother flew up to rescue me and take me home.
This was all humiliatingly, embarrassingly, shockingly destructive to my wounded psyche.
And, still another batch of some pill or another would arrive by carrier pigeon and for nearly two years life did not exist.
My poor child and her poor father.
Looking back I am inordinately proud of the three of them.
However, it doesn’t end there.
Off go the complaints to the MHRA, to the MP, to the MIND, to Lawyers, to anyone I could think of to try and right this horrible injustice that came at us Out of the Blue.
Compounded and compounded and compounded, each step of the way knocked back in to a zillion pieces…..this is a travesty and it is still going on…..
I know you will understand, Heather, and a million thanks to you for going at this like a terrier…Olly would be proud.
None of the many home visits were written up by the GP when I was squawking and I must have seen her over 40 times.
“It must be awful for your mother watching you fall apart” commented the Medical Receptionist when somehow I had dragged myself to the surgery, again and again and again.
This was a little village, our haven, our home.
We had spent over 15 years renovating our property and our child was very happy, well balanced and adventurous with the beach adjacent and the hills behind….what was not to like about our success story and the man from Calgary flying high night and day in extreme weather to the Outer Hebrides and Western Isles saving lives……
Too many are dying a grisly death to even think about why each and every one of us will work our hardest to save even just one from an unjust and unnecessary end
In the aftermath and fall out I said to myself that I will home educate my child and I don’t care what happens to me after that.
After 14 years of acrimony from all powers that be, I have completely changed my mind..
Who could have stepped in to break up this cycle?
Certainly not all these bad apples and certainly not GlaxoSmithKline..
Great post Sally. Im on a slow wean from 14 years on Seroxat. Its incredibly difficult to have an intelligent conversation about getting off these drugs. As we know support & understanding is too often limited and the kind of reaction you get to a desire to taper drugs is really dependant upon your gp. Some are supportive, others less so. Like many others I have had great difficulty coming off Seroxat but despite my own experiences I am in no position to advise others what may be right for them. A close friend was recently put on 40mg Prozac. I didn’t know what to say, I didnt want to frighten her. As another contributor mentioned knowledge is power so I guess if anyone were to ask me about starting/stopping an antidepressant I would direct them to RxISK and encourage them to research the drug and risks vs benefits. The difficulty you run into as I found myself is you end up with an awful lot of horror stories. I was terrified of reducing for fear of what may happen. Support is invaluable during this process, it affects us all differently I think and its important to create a space where people can express concerns or go for reassurance. GP’s in my experience have tended to be pretty useless in this regard, all credit to David & RxISK for support, understanding & clear information regarding coming off.
Annie, heavens yes, I get where you are coming from, and yes, I think we share the terrier trait! I bet loads of others would too, if they weren’t feeling so broken down and ill because of what these various meds, in particular Seroxat, have done to them. I lie awake at night, ruminating on how on earth, in a supposedly civilised world, the hell that was unleashed on you, your family, Olly, our family, can be allowed to happen.
We trust doctors. Well, some of us did, but not any more. You fought to get justice and it seems the more you fought, the more the cover up and character assassination went on. I fight for Olly now because I simply must. I fought for him all those 11 years, but without self belief, because I trusted doctors. Because I believed they would know best….they would not ‘do harm’ and prescribe anything harmful. I thought they’d be conscientious….do their own research, take on board feed back from their patients. I mistakenly thought they had an inbuilt sense of responsibility towards those under their ‘care’. I was so incredibly naive.
You say Olly was handsome. Bless him, he’d been hounded at school for his wretched acne, derided for being ‘ugly’. It haunted him, gave him PTSD in fact. But he let us keep him off RoAccutane till he was 21, out of deference to his daft fussy old parents. But OMG, when he took it, and then Seroxat, you could say, in a way, that all our happy lives became history. Family relationships, never easy, broke irrevocably, because his unexpected behaviour was not understood. They cannot be healed, despite our efforts, because, like you Annie, we were not believed, and they still don’t want to know. ‘Doctor knows best’, well, did…
Olly’s gone now and we are left with no one. I was in a group of very nice volunteers the other day, set up by counsellers, and I went on, as I do these days, about akathisia and medications, SSRIs etc and Olly. We handed them all written information and RxISK contact details etc. I must have come on a bit strong, because at the end, one very nice counseller woman said it was all very well, but shouldn’t I be looking to do something else, something to give me pleasure, something uplifting just for me myself. I could feel myself welling up with tears. I tried to explain that these drugs and their prescribers and manufacturers have killed our life, taken away our future, and what is there left for us now to bring us any sort of joy, but to do Olly’s will and try to right this enormous worldwide wrong. I can’t shut this off into a convenient compartment to be less full on about it, and I guess, nor can you Annie, nor you Carla, nor Sally, nor any of us, because ‘evil flourishes whilst good men (and women) do nothing’. So, on we go, on and on, till it ends in success, for it undoubtedly will. And thank heavens for our solidarity.
I’ve been getting very depressed recently and I thought about antidepressants but I know they can be a roller coaster and when they stop working they can plunge you into hell far worse than the original depression, so I decided against it.
Today I woke up feeling depressed but I decided that feeling miserable was a complete waste of time so I snapped out of it. I don’t know how long it will last, but there are other ways of coping with it. The depression had been so horrible that I felt I couldn’t go through that again, so I switched it off. Maybe I’ve turned a corner. I’m doing some more CBT soon so that should help.
Oh good for you Kevin! Your mind is under your own control, and that freedom is so precious. If you can try to dig deep and find what thoughts are making you feel depressed, and then find even one thing that makes you smile, or you look forward to doing, use them like pointers. Hold onto the happy thought, be kind to yourself, and try to put small events into your life each day that lift your mood. Depression doesn’t have to last. But keeping your own mind functioning clearly, free of drugs, can restore normal service again. We all get these moments of blackness and fear, but we have an inbuilt power to accept them and send them on their way. CBT or talking them out with good trusted friends can help. But, keeping a clear mind, your very own, is the best help of all. Keep in touch with this Blog if it helps, we are all wishing you well and we are here for you 🙂 good luck!
Carla said: “Educating people is important however, when some refuse to listen, we hope that the information shared will remain in their consciousness.”
You never know when a seed you have planted will take root. It might be 10 years fro now, but at least you have spoken your truth.
Carla, again: “Sadly, there are some people who believe that if they are fine taking these medicines, they will never have to worry about case scenarios like mine.”
Or mine – except here’s the thing. The longer they are on the drugs, the chances of problems from the drugs increase synergistically. Statistically, each year they take the drugs, increases a percentage of this problem or that one.
For these people who “need their drugs,” I caution that they are not tested in the long term, to please consider only taking them short term (up to a year), and when they are ready to get off, that doctors can cause more harm than good – to seek out proper tapering information.
It’s actually easier to do this with antidepressants, than it is “medical drugs” (such as statins), or benzos, because of the emotional attachment to the drug. Then, I find, unless there are obvious symptoms & complaints, I bite my tongue.
Sadly, I see more and more people in various forms of prescription cascades, and feel quite helpless; I have knowledge and information but it is frequently unwelcome because, “I am not a doctor.”
I have some positive news, for everyone on RXISK.
It may not seem like nothing however, I believe that David Healy and all the people on RXISK are on to something that could be the pivotal catalyst to beginning of change.
The other day, I went to book some driving lessons for my son.
I will not mention the organization however, they are a reputable honest company.
The last question he asked me, really took me by surprise:
“Is your son taking antidepressants or any other medication?”
This was a golden opportunity for me to ask the gentleman making the bookings for my son, as to why he has asked me this question????
“Antidepressants and other medications alter people’s behaviour and way of thinking and our driving instructors know how to handle these situations!”
“I think this is great that people are becoming aware of how these medicines impact people’s mind.”
If it is for insurance purposes, to ask these questions ~ I don’t know!
Seriously, if companies are aware of issues like this, surely and with certainty, hospitals, educational institutions and other work environments, are aware of these issues.
Either, I have had my head in the sand or something POSITIVE is making people aware of what these medicines are capable of doing.
I am going to see this as a positive milestones in the development of a tiny seed growing bigger than we can ever imagine : )
If people are starting to question medicines and their impact on the mind, we should all be grateful that something positive is coming out of our stories.
The next big step is making people aware on how they can treat symptoms by going back to mother nature and good old common sense.
There is still some HOPE, that Western medicine, may be dramatically revolutionised, in many years to come.
I am very positive that people are listening and clinicians will have to inform their patients of all the potential risks.
Leaving things to chance, is so archaic.
People come before profits!
If we can minimise the risks of people being harmed, I believe our stories are not in vain.
I feel that this is brilliant news!
The RxISK new section re AKATHISIA identifies that: –
“Significant symptoms of akathisia occur in : –
Around 20% of people on an antidepressants.
At least 50% of people on an antipsychotic.
On higher doses, this rises to 80% or more.”
Akathisia is associated with profound changes in personality and behaviour.
It is the SSRI (et al) precursor of aggression and violence against self and others.
How many of the increasingly aggressive and speeding, recklessly overtaking-at-all-costs drivers are doing so as a result of SSRI – ADRs that they have never been alerted to?
Estimates of SSRI use suggest vast numbers of drivers may be akathisic.
This might explain the common perception: –
“driving is becoming so much more aggressive”.
So – fantastic that driving instructors may be alert to this.
Prison officer awareness of akathisia causing part of the epidemic of violence and increase in suicide in custody?
Coroner awareness at every suicide/murder inquest, at long , long last?
Emergency (A/E) departments?
Police attending crimes of violence, domestic incidents?
Teachers struggling with aggression in schools?
The list is vast.
How many souls could be saved from “refer to psychs” followed by more drugging, incarceration and worsening akathisia with toxic psychosis, were there to be such awareness?
How many families and loved ones spared from a lifetime of grief and unremitting sorrow?
How many millions of squandered NHS monies saved for none-iatrogenic, real illness relief?
So very many targets for more and more banner-unfolding by Heather and her colleagues!
Brilliant, something is now happening which might address the
stark reality of D.H.’s accurate concept : –
“I believe the SSRI era will stand as one of the most shameful in the history of medicine”.
So it surely will, but is the light dawning earlier than we could have hoped?
Two days ago, I was “marketing” the RxISK AKATHISIA report to a concerned, interested and listening G.P.
Yesterday, – – to a fantastic day-theatre team delivering truly personalised and empathetic surgical procedures of incalculable physical and psychological benefit. They are listening and interested.
The new AKATHISIA reference site on RxISK is powerful indeed.
I wonder if the treatment section might include a reference to the very compelling, albeit transient, improvement that I witnessed in escitalopram + sertraline induced (extreme) akathisia as a response to diazepam?
Brilliantly put Tim. Now we need to get the pressure on in all those areas on your list. Marshall our individual expertise and connexions and bombard them with information and logic, delivered with charisma and calmness, and underlying grit and determination at the same time.
I agree with you wholeheartedly.
Everyone who comes to RXISK have had unpleasant experiences.
If we can help one another ~ this is a good thing!
We might not have all the answers however, we may be able to shed some light on a situation which may be dismal for some people who have no one to turn to.
For many who are grieving, please do not give up hope.
Something good, I believe, will come out of all our experiences.
Mary, Heather, Sally, Kevin, Annie and all those blessed souls I have not mentioned, please continue to ‘speak up’, no matter how disheartening or challenging it may be.
JanCarol, hit the nail on the head.
Jan Carol said:
” You never know when a seed you have planted will take root. It might be 10 years fro now, but at least you have spoken your truth.” ~ I believe this with all my heart.
There are so many ways to battle depression and sometimes being around optimistic people, I find, helps tremendously.
I am not being arrogant however, somehow, deep down inside, we know more about these medicines and how they impact our good health.
Doctors, can learn from us and perhaps direct their patients to RXISK.
Hang in there, everyone and believe that change is inevitable.
Thank you for your kind words, JanCarol.
All the best to everyone.
A few kind words go a long way.
Absolutely right. We are on a roll, I feel. The times they are a-changing, the people are speaking and common sense is at last coming to the fore. In the end, it’s about self preservation and restoring the sanity of the planet. (Except apart from Trump, maybe)…
You obviously have a clear understanding, awareness and precise insight on how these medicines are impacting so many individuals, on so many levels.
– Prison officer awareness of akathisia causing part of the epidemic of violence and increase in suicide in custody?
– Coroner awareness at every suicide/murder inquest, at long , long last?
– Emergency (A/E) departments?
– Police attending crimes of violence, domestic incidents?
– Teachers struggling with aggression in schools?
The list is vast.
Most importantly, we also have to be mindful of professionals who are taking these medicines and how they treat others.~ It is one hell of a vicious cycle humanity has entrapped itself in.
We are a ‘FORCE TO BE RECKONED WITH’ ~ It has been long overdue!
Some people should be ashamed of how they treat WHISTLEBLOWERS?????
You might actually thank us all one day! ~ This would be nice : )
I believe every living being has their ‘down moments’~ you are only human.
We are proud of you.
To acknowledge that these medicines have their limitations and can make things worse than the original depression, demonstrates that you have gained ‘mastery’ of what these medicines are capable of doing.
I am truly happy for you and am very grateful that you have found other ways to cope with your depression.
This is absolutely empowering for you.
Keep up the great progress : )
Sending you oceans of love, Carla
Carla, I agree that we have had the opportunity to indeed become a force to be reckoned with. We will not be stopped in our compulsion to try and both alert and protect others.
For myself, this awareness evolved as a result of experiencing the most ill-informed, brutal, arrogant and didactic imposition of alleged “Medical Practice”.
This was to result in the “loss” of the most delightful, captivating and enthralling young member of my family who was persuaded to take an SSRI for “college stress”.
There was no depression whatsoever, only misdiagnosed AKATHISIA.
Although we are blessed to have a “partial survivor”;
for five years this week, we have tried to protect from the institutionalised drug poisoning, incarceration, destruction of all hope and devastation of self worth caused by an approach to medicine which is the antithesis of everything that I believe that real medicine should be.
I am saddened, often in despair, that I could not persuade those who destroyed the greatest and best soul I ever knew, to even consider that there was never any of their meaningless “psychiatric diseases”.
There was only an ever increasing cascade of serious adverse drug reactions.
ADRs that placed the prescribers and enforcers into absolute denial.
The AKATHISIA was intense, increasing and I now realise: – barn door obvious.
Not however obvious to those “physicians” whom we trusted to help.
I have studied everything that I can find addressing the reality of psychopharmacology and it’s fearsome toxicities, during this five years.
Without the blessing of finding a truly expert, empathetic and
patient-centred academic specialist who recognised and reported the reality; – I believe we would have rapidly had this dearest soul’s life medically brought to a close.
Who would not rather struggle with appalling injury to brain, mind body and spirit than grieve over yet another prescription drug poisoning with enforcement unto death?
The care, understanding, compassion and support from the
family-of-the-informed on this website is truly inspirational.
Thank you for your own, evident and sincere care.
I have every respect for those who themselves blow the whistle. I have some insight into the impact of the resulting vitriol on their families, as well as upon themselves.
We do indeed have to be mindful of professionals who, via the intensity of their own commitment, are vulnerable to “burn-out and distress.
Newly established “Systems of Excellence” in “caring” for some of these people may result in them, and their families, learning first hand about psychotropic drug toxicity.
I do hope that they are offered none drug based forms of care.
I am so sorry to hear about your dear beloved family member being destroyed by these senseless medicines.
I wish I could give each and every one of you a big hug and tell each and everyone one of you that things will get better. I hope a virtual hug suffices : )
I cannot understand why western medicine deals with iatrogenic medicine induced problems by compounding a negative outcome with additional destructive medicines. Once harm has been done, adding more pills to the equation, only results in the downfall of someone’s good health?
This medicine, combined with other medicines, destroys the ‘good mental/physical health’ of millions of people.
Indeed, whistle blowers pay the price for speaking up however, we hope that positive changes result for many so that treatment of care improves.
Our experiences should be used for medical students so before they get out into the ‘real world of medicine’, they can better understand the impact of these medicines on patients. Our stories will be engraved in their minds and hopefully clinicians will turn to safer alternatives for mental health and other medical issues.
Real life stories, like ours, should create positive ‘road maps’ for future doctors ~ one which is based on holistic healing NOT HARM!
The old paradigms of medicines are so out dated.
I agree with you completely, Tim.
Clinicians should be able to practice their field without feeling stressed or burnt out!
Commitment is honourable however, taking time out when they feel that things are getting out of hand, is the wisest thing to do.
Patients receive better care when clinicians take care of themselves, also.
Handover and communication are vital to positive outcomes for patients.
Thank you for sharing your story with me.
I hope we all feel supported and cared for by the rxisk community.
We are all struggling however, with a few kind words, we seem to pull through by soldiering on ~ we must never give up hope.
Blessing to you and your family, Tim.
Tim, your description of the unleashed hell of akathisia is heartbreaking real. Like you, we have studied all the available research, read all the patient accounts, talked to so SO many others who have suffered. Like you, we do this because of our beloved family member, who suffered so, at the hands of those in power medically, whilst we stood by and watched in total disbelief at what was being done to him, in the name of modern day ‘healthCARE’….
You could almost say we could have written a thesis on this, after a 4 year course of endless investigation.
With so much media air time given over to understanding the human psyche, so much compassionate enlightenment flying around (which is of course a really good thing), I just cannot see why we have to fight so hard to explain what psychotropic drugs are doing, given that the science is so clear. (The Emperor’s New Clothes by Irving Kirsch – brilliantly explains how the placebo effect works). Is it that the operators of our Mental Health Care system are so brainwashed that they can’t look at reality, or is there something more sinister afoot? Is it that the powers that be do know how desperate matters have become, but fear they cannot turn back and admit this, for fear of reprisals? Hitler lost out in the end, but many supported him through fear that without him, their own power would be lost. Do we have a similar situation now with Big Pharma and it’s medical army?
Sorry, title for Irving Kirsch’s excellent book should have been ‘The Emporer’s New Drugs’, and there’s no apostrophe in ‘its medical army’.
Remembering how Sally opened this post, about ways of advising others who wonder whether to embark on taking psychotropic medications or tailing them off if they already have, I’d say this book is the clearest I’ve read yet on understanding the science behind all the spin on these medications. Even just the first few chapters would show how obvious it is that we have been conned into believing that these drugs are essential. He explains the placebo effect perfectly, and also how important it is for all guinea pigs to have side effects from whatever their placebo is, otherwise they know it’s a placebo and immediately lose faith in it.
It would be very interesting to have a subject up for discussion here one day about ‘mind over matter’, how we can control our own reactions to events etc, even to some extent to drug damage. Some will think it’s possible, others won’t. I think personally that we don’t actually tap into anything like the inbuilt mental resources that we have because others, sad to say, particularly doctors, can tell us things are looking bleak, that things will only get worse, and we go into free fall.
After a brain scan years ago, I had some ‘funny’ readings and it was suggested I had CJD. I remember dissolving into a little heap of jelly and believed my life was over, I would be a burden to my family etc. However, just out of curiosity, and maybe an inbuilt distrust of some of the medical profession, I took the scan to another expert, later, who read it and said he couldn’t see anything wrong at all. Then the first lot had another look and said no, they’d got it wrong. That was nearly 30 years ago. I perked up amazingly. I think it shows us again that we should question everything, and if it don’t feel right, don’t swallow it. We have an amazing resource of intuition, and we don’t trust it and use it enough. So, advice to Sally’s contact – go with your gut instinct.
For all of you searching for advice: please check out
Kelly Brogan’s website. She has helped many people successfully withdraw from and avoid taking antideppressants. She offers a e-course for dealing with depression and other mental problems without any medications and includes a guide on tapering off antidepressants and such.
I appreciate people helping people however, if someone has been damaged by meds, and they have tried everything and permanent damage has resulted, it is very unlikely that anyone can help someone. It breaks my heart when some clinicians do not know what they are dealing with.
Advice is beneficial however, we have to be mindful of the choice of words and what type of treatment we offer, when we try to offer help to others.
People that have been damaged by meds do not necessarily have mental health issues and it is this kind of ‘biased/distorted/illogical’ thinking that places innocent people in a ‘perceived’ category’ of dysfunctional labelling. This is the kind of stigma people face when they have exhausted everything and are left with residual health issues. The are labelled ‘mental’ ~ not very nice!
People changing their mindset to compassion and empathy, would be what many would appreciate.
Some meds damage beyond ones beliefs and those who had trusted their health with their life, in the hands of those who care and have suffered, should deserve better!