In response to recent posts, especially A Time for PSSD, Laurie Oakley got in touch with the following thoughts. Laurie has had a series of six posts on Pharmaceutical Rape on davidhealy.org starting in February 2015 but mostly from early January 2016. These outline her own difficulties recovering from medication induced injury and the equal injury of finding the system unwilling to concede there was an issue it was responsible for and should do something about.
Exploring Recovery
Recent posts show how pharmaceutical injuries that are ignored by health authorities – a major form of victimization in the modern world, often with enduring syndromes – can result in overwhelming emotional outcomes involving deep confusion, doubt, anxiety, grief, rage, profound disillusionment, and hopelessness.
Having had a life-altering benzodiazepine injury for more than a decade that has stubbornly refused to respond well to any treatment, I have sought both physical healing and non-physical, emotional and spiritual recovery. From this vantage point I would like to offer some thoughts.
Questions I have grappled with:
- Is it possible to live with the damage?
- Can one hold out hope that health does return but accept that it may not happen?
- And build a life that is worthwhile even if one doesn’t have full physical recovery?
- Can one accept trauma/injury/suffering as having spiritual value?
- To live with the grief, and grow through it?
- Can one come to terms with the injury, trauma, and betrayal?
- Can one gain a changed perspective to find hope and comfort?
- Is it possible to cultivate an attitude of acceptance?
- To find satisfaction in the things one can still enjoy and do?
- Are there positives that can be found in what has happened?
- Have losses left room for other things?
- Can one make the best of it, embracing what they have? What’s left?
- To have a different kind of life that is good in different ways than previously planned?
- Can what has been learned be used in a positive way?
Last year I asked several pharma injured individuals if and how they used spirituality to deal with pain, anger, and resentment from having been betrayed by the medical system, and also asked if they found it eased physical symptoms. Here is a condensed list of their responses:
- It is normal to feel anger and betrayal
- It helped to keep talking about what happened – to speak my truth
- I had to let go of outcomes
- Take the rest you need
- I prayed about my situation and for others
- Visualization was helpful
- God, Bible, 12 steps helped (and were mentioned repeatedly)
- Taking responsibility for oneself – no longer giving it over to doctors
- I recognized the medical profession is dysfunctional – in need of healing too
- Mindset – not thinking about what I’ve lost but what I have and what I have learned
- Not trusting in the system
- Meditation – found peace – all about the inner journey and Love
- Give it to the Universe – release it
- Let go of resentment
- Pain and loss are not my primary focus anymore
- Reaching out to help others helps me
- I have been reassigned to a different purpose – calling.
- Channeled sadness and anger to working constructively and helping others.
- EMDR, DBT, ayahuasca, psilocybin
- Therapy and self-led therapy
- Openly advocating for oneself – taking one’s power back
- Not everyone is meant to understand you and not everyone cares. Cheris those who do.
- Nature walks, photography, animals, therapy animals, helping others
- Accepting I cannot change the past
- Firing practitioners who don’t listen
- Took responsibility for illness, left off blame and victim mentality, asked God for help
- Take better care of oneself
- Hiking, stretching, foam rolling
- Nature, growing food, birds, wildlife pond, walking, singing Changed mindset
- I notice a huge difference in how I feel after a recovery meeting vs ‘activism.’ The activism often makes me feel worse”
One that really made me think: Unless there is a reason for suffering, suffering is meaningless – so instead of asking ‘why me,’ I said, ‘why not me?’
A Time for What?
At the same time L’s post A Time for PSSD appeared. L was very aware that some people found messages like hers grim. People get violently upset at the idea PSSD might be permanent and want to shoot the messenger.
She thought long and hard before posting a piece about someone with PSSD who had taken his own life – When Antidepressants Kill, They Blame Depression.
One of the big problems with all this is that others blame depression but people blame themselves for being weak and taking an acne drug or a drug for hair loss or a drug to make them less anxious. These are terribly seductive drugs. There are very very few of us can resist these temptations. To blame ourselves afterwards – to think we are somehow weaker than others – is part of the tragedy.
Most of those affected with PSSD and other conditions or protracted withdrawal are astonishingly resilient and pretty quickly end up knowing more about medicine and the conditions they have than the doctors treating them – which of course can add to the problem.
Trying to find an image of Recovery for this post was difficult. None of the therapy or healing images that show up on google seemed remotely right – for reasons outlined below. The best was Green Shoots – plants sprouting up in Barren Soil.
But then Killing Eve came into the picture – with the questions can having homicidal thoughts about people who have injured you be a sign of health – and perhaps if this is a sign of health in some way some of us might not want to recover absolutely fully. Whatever about these ideas, this gave rise to this image with its dressed to do what image.
Solidarity
After L’s post, and Sex Please but We are on Antidepressants, someone with PSSD got in touch asking for help with its treatment. There are several requests like this per week. I have no option but to respond with an answer that leaves me feeling the other person will be angry with me.
I don’t know what is wrong in PSSD and I don’t think anyone does and I know of nothing that acts reliably. Some people though do recover spontaneously
I usually feel the person asking the question figures there must be an answer and I must know it and am deliberately holding back.
This time the response was – where can I find a therapist that will help me do this.
This response brought Laurie’s comments about recovery back.
Recover here means getting to a point where a drug induced problem may continue but it no longer defines us. How do people get to this point? Laurie’s conclusion is rather like mine – some people get there, others don’t. The kinds of groups Laurie helps run don’t have a clear therapy program aimed at getting people there. It’s more people with a similar problem getting together and enduring/supporting each other and not telling anyone else how to do it – we are all different.
My initial sense was that perhaps people with PSSD should not get involved in a PSSD group. Too much of a focus on the problem could be counterproductive. But some of those who have recovered from PSSD (still have the problem but get on with life) like L and others linked to RxISK have done some extraordinary things to help raise the profile of PSSD and generate an interest in solving it. Others in PSSD groups don’t get active in this way. They seem to lose hope and can almost feel to be slipping away.
What gets people from focusing on their problem to recovering?
Keeping away from therapy I think is a good idea. There are no therapists or therapies that can bring about a change like this. Therapists view us as people to keep in treatment rather than people who know more about the condition than they do. They keep us from recognizing that we can be agents of change and instead sustain the impression that we are someone to be fixed. This s not a recipe for recovery.
There is something about non-professional others that can be more helpful than therapists. Solidarity is important. Yes individuals do arrive at a point where they have recovered (perhaps with occasional delicious homicidal thoughts that they can put away) but it seems less likely they are going to achieve this sitting in a room meditating.
This is something of a non-conclusion. It would still be good to have something like this to send to people who want the ‘cure’ for PSSD. With this in mind, we welcome all comments.
But bear in mind these are very tricky issues for the people who will read the post, who want salvation but often feel they are slipping into Hell.
L says
Thank you for this survey Laurie.
Each item on that list of strategies can mean a great deal to someone, as it is true that we are all different. I see I’m not the only one with a liking for birdwatching, nature excursions and bodies of water.
Tracey says
What a beautiful post, very grateful, I do many of the things you mention but I get really stuck sometimes. I was never allowed to express my anger, you’re right the anger is healthy, and I was shamed recently for expressing myself on Facebook. David said to me “sometimes you just have to be non compliant”. I literally don’t know how to do that. Lots to mull over. I’ve started making videos to express my experiences https://youtu.be/iWnO5brZx_Q but I get waves of self doubt and feel shame, plus I’ve been living in a very unsafe environment and I’m processing serious sexual assaults as a child and an adult. I love you mentioning that more therapy may not help, that’s been my experience, I’ve worked the 12 steps too but because of persistent abuses – which as you point out – become an opportunity- for me to learn to advocate for myself. It’s hard though, some days I’m overwhelmed. However I have to find a way through so I do. I studied kinesiology and energy healing. I’ve said “I’m healing” through gritted teeth when the looping Akathisia ocd thoughts, even yesterday, we’re trying to convince me that some of my engagement with professionals, that change is happening slowly, means I can “check out”. “One day at a time” and REALLY engaging with what I do have, which takes tremendous conscious wilful determination, when the black hole of abandonment tries to swallow me up, sometimes doesn’t touch the sides but some days I feel the flow of a positive shift. Thanks again, hopefully meet you on the road! x
Spruce says
I wanted to offer some hope to those who have been off prescription drugs for a long time (even more than a decade), and are still suffering from protracted symptoms.
Over the 14 years of me having PSSD, I have heard of quite a lot of people making a full recovery from protracted withdrawal; even after a decade of being off the offending drug that caused the protracted symptoms, and sometimes after a decade of seeing very little improvement.
People can fully recover, even after a decade or more, of having no, or little improvement at all, in their symptoms.
Below are links to such recovery stories:
* Mr B’s recovery story (12 years to fully recover from protracted benzodiazepine withdrawal):
http://www.benzobuddies.org/forum/index.php?topic=178596.0
The guy above went under the name of “Mr B” on benzo buddies, and took a full 12 years to fully recover from being “cold turkeyed” off of lorazepam; although he started getting good windows at 10 years off. I have communicated a lot with him, and he believed his symptoms were likely permanent, right up until 10 years off, when he started getting good windows.
To read the full story properly, it is best to log into benzo buddies as a guest (well worth doing, as his story is an interesting one).
He mentioned to me in our personal messages on benzo buddies, that when he had contacted Una Corbett from Battle against tranquilizers, and Barry Haslam; they had said they had heard of others that had taken over 10 years to fully recover, from protracted benzodiazepine symptoms.
* Guy called “Anon 638” (fully recovering from sexual effects from Post Finasteride syndrome, at 15 years off):
https://forum.propeciahelp.com/t/member-almostcured-15-year-recovery-story/33787
People fully recovering from the seemingly permanent tardive dyskinesia:
https://r.search.yahoo.com/_ylt=AwrIdF3qwOJhAS8ALSkM34lQ;_ylu=Y29sbwNpcjIEcG9zAzEEdnRpZAMEc2VjA3Ny/RV=2/RE=1642279275/RO=10/RU=https%3a%2f%2fpubmed.ncbi.nlm.nih.gov%2f6145520%2f/RK=2/RS=f.yOY.6CCx3_.ASqC8PvkSr6gnQ-
Some links to some people who recovered or mostly recovered from PSSD between 5-10 years off:
* Alto strata (took 9 years to fully recover from PSSD):
Altostrata stated:
On SurvivingAntidepressants.org, we have a number of people who have recovered from PSSD. My belief is that just as most people recover from antidepressant withdrawal syndrome within a few months to a few years, they recover from PSSD.
PSSD is a component of the autonomic dysruption caused by antidepressant use and withdrawal, as are the symptoms of withdrawal syndrome.
I myself have recovered from PSSD. After coming off Paxil in October 2004, among other withdrawal symptoms I had the absolute genital anesthesia, which lasted for perhaps a year. Very slowly, genital sensation came back.
Then I experienced perhaps 3 years of “ghost” orgasms, in which arousal is followed by what would have been an orgasm but instead, a non-event lacking sensation, and then a refractory period.
Following that, I had perhaps a 4-year phase of “ghost” orgasms with occasional weak orgasms, which gradually became stronger and more frequent.
At about 9 years post-Paxil, I was fully recovered from PSSD. As I was menopausal before I came off Paxil, my belief is younger people with full complements of sexual hormones will tend to recover faster. However, recovery from PSSD can be almost imperceptibly gradual, which can be masked or even impeded by the very understandable frustration, anger, and despair brought on by the condition.
* Charlie Brown (fully recovered from PSSD in about 6-7 years):
https://www.survivingantidepressants.org/topic/12532-charliebrowns-long-road-to-success/
* Half person (first recovered from PSSD in about 6 years (April 2nd 2015 comment), and then went back on SSRI’s, and got PSSD again):
https://www.survivingantidepressants.org/topic/8655-halfperson-16-months-off-ssris-ct-with-the-twin-joys-of-pssd-and-anhedonia/
* Happily derailed (took just under 6 years to recover):
https://www.survivingantidepressants.org/topic/22421-happilyderailed-from-heaven-to-hell-and-back/
Some people who recovered from PSSD in under 5 years:
* Loss leader (recovered from PSSD in about 4.5 years):
https://www.survivingantidepressants.org/topic/3523-success-lossleaders-recovery-from-protracted-zoloft-withdrawal-and-pssd/
* The Automator (recovered from PSSD by about 80% – 90% in about 2 years):
https://r.search.yahoo.com/_ylt=AwrJQ4yqedtfKT0AQzkM34lQ;_ylu=Y29sbwNpcjIEcG9zAzEEdnRpZAMEc2VjA3Ny/RV=2/RE=1608247851/RO=10/RU=https%3a%2f%2fwww.survivingantidepressants.org%2ftopic%2f7574-%25E2%2598%25BC-theautomator-recovering-from-pssd%2f/RK=2/RS=omt7zgZ635iqiCgbbBtCwMtXSEg-
* Theelt 17 (fifth comment from the bottom on page 17, and took just over 4 years to recover by 70%):
https://www.survivingantidepressants.org/topic/4213-%E2%98%BC-theelt712-tapering-off-zoloft/page/17/?tab=comments%23comment-400210
An extract from a recovery story (the link doesn’t work anymore):
is very brave of you to share your story here.
I had a similar experience with Paxil in my late 40s– I took the drug maybe a dozen times, and my sex drive changed completely, for years, even after I stopped the medication. The best way I can describe it was that I no longer found women (I happen to be heterosexual) attractive in the same way– I might be fascinated by someone’s sense of humor, or find their physical appearance appealing, but it became a purely aesthetic appreciation. It was like looking at art in a museum– a huge component of physical arousal disappeared instantly. In my case, sex was possible, the physiological functions occurred pretty much as they always had, but they required more effort, as you say, and were devoid of pleasure. It was just bizarre, unexciting– less fun than eating, about as gratifying as ingestion or excretion– so obviously I had little interest in it.
By absolute dumb luck, while I was earning my masters in clinical psychology, I took my group therapy class with 20 women, all of whom I respected and found engaging and attractive in one way or another. My story is very unusual, because for some reason, after one particularly powerful group session, my sex drive returned abruptly and immediately. I never had any sexual interaction with my classmates whatsoever beyond the kind of innocuous, low-level flirting that might occur between friends in many other social contexts. The nightmare was over, and it literally ended pretty much in a split second. You can only imagine what I felt like that day, staggering around campus, and the streets of Los Angeles, flooded with feelings and emotions that had been absent for years.
For the last 10 years, I have been wondering if– and how– some group process might be devised that could help some people with PSSD. I corresponded with a local Center for Sexual Health many times from about 2012 through 2015, but it was logistically too complicated to set up a group. Maybe it’s time for me to try again.
I wish you the best in your journey. My experience of recovery might be very unusual and very difficult to replicate. The program I was in was a very immersive one, and the people I was studying with were really a rare and special group of people; I am still close friends with many of them.
But I can’t believe that this couldn’t happen for someone else. Best of luck on your journey. I hope you do not give up hope. And as a licensed therapist, I do everything I can within the limits of my scope of practice to warn patients about the long-term risks of SSRIs and SNRIs. I have treated hundreds of people, but I have only had one or two who actually seemed to realize any benefit from this class of medication.
*I have heard of at least another 10 people (not included on the list mentioned here) who have completely, or mostly recovered, from PSSD.
* I have also heard of many people who took between 5-10 years to recover from protracted benzodiazepine symptoms; from my time going to the Battle against tranquilizers charity while I was withdrawing off benzodiazepines; and from going on the benzo buddies website.
While there is no guarantee that everyone will recover, there is a lot of hope for recovery!
Starlight says
Spruce
I am so interested in all that you have discussed here. I used to speak to BAT (Battle against Tranquilisers) until dear Una passed. I never really asked her about long term protracted cases but you have seen many get well and she had too by the sounds.
How long have you been in withdrawal yourself?
Spruce says
Hi Starlight, I was lucky enough to meet Una in person a number of times.
She was a lovely woman, who has helped a lot of people; and she always told me that almost everyone thinks the protracted symptoms are permanent; but that everyone she has seen come off, went onto eventually recover; even if the protracted symptoms went on for 5 or 10 plus years etc.
I am no longer in benzodiazepine withdrawal, as I did a very slow taper over about 4 years, and I had relatively few symptoms when I jumped off in 2015.
Before doing the long taper, a psychiatrist tried taking me off a high dose of lorazepam over 6 weeks, and I suffered acute withdrawal; which was very unpleasant, and very frightening, and I was non functional for 6 months (I could barely make it to the shop to get food).
After about 6 months of suffering everyday, with no improvement in my symptoms; I found Battle against tranquilizers, and I was put on a dose of diazepam that reversed most of the withdrawal symptoms; and they showed me the correct way to withdraw from benzodiazepine; very slowly, making small 10% cuts about every two weeks. Doing it this way was much more bearable and resulted in eventual success.
It was then that I realised that most doctors really don’t have a clue what they are doing when withdrawing people off prescription medication.
I just have the PSSD and emotional anaesthesia left from the SSRI Citalopram now. I have had a small amount of progress in the PSSD over the years, but the progress has been minimal, and frustratingly slow.
I am trying to stay positive, that I will eventually recover, as I have heard of others who have been off longer than I have, who have recovered.
Are you still going through withdrawal Starlight?
Dr. David Healy says
I think the key point here is ‘most doctors have no idea what they are doing’. Benzos can be very tricky – some of them easy to get off and others impossible. For some stopping benzos is easy but stopping SSRIs impossible and vice versa.
The difficulty for everyone is no-one knows what is going on and everyone finds the uncertainty difficult to tolerate and even someone who gets off benzos easily can become intolerant of someone who can’t
David
Spruce says
It is interesting how people can be affected so differently by different medications.
I was put on the SSRI fluvoxamine at one point for 5 months, and I had no trouble coming off of it at all, and I stopped it completely cold turkey.
I had a few brain zaps and felt slightly unwell for two or three days, and that was it. It also seemed to have no real noticeable affect on my sexual function/ desire etc.
But then when I took the SSRI Citalopram, I developed a severe form of PSSD within the first day of taking it.
When a psychiatrist tried taking me off of 3.5 mg of lorazepam over 6 weeks, I felt absolutely awful.
Muscle tremors, severe anxiety, severe insomnia, auditory hallucinations, muscle cramps and tightness, severe balance problems where I couldn’t walk in a straight line, and much more. These symptoms went on every day for about 6 months, without letting up at all, and made me non functional.
So for me SSRI withdrawal was mild (apart from the PSSD), but the benzo withdrawal was nasty.
But I have heard of others really struggling with coming off SSRI’s, and others who have gotten off benzos relatively easily (although most people I have heard of coming off benzos, seem to struggle).
Starlight says
Thank you for sharing your experiences with Una and her wisdom. That is so comforting. Yes I am still in withdrawal and have been for some time. What did Una think about anti depressant withdrawal? Did she feel everyone recovers from that too eventually?
How long have you been off the citalopram now? And how does your PSSD manifest? No need to share if not comfortable.
Thank you again for your heartfelt response.
Spruce says
Hi Starlight.
Una never really mentioned to me about antidepressant withdrawal, unfortunately.
Are you in withdrawal from benzodiazepines or antidepressants?
To answer your question about my PSSD:
I first developed PSSD in November 2007 (so over 14 years ago), with the first Citalopram tablet I took.
I last took Citalopram in January 2009, (I stupidly took Citalopram for a second time in December 2008 for about 3 weeks, then not realising the risk of long term PSSD).
So officially off SSRI’s for 13 years, but suffering the effects of PSSD since November 2007 (over 14 years).
The second time I took Citalopram, my PSSD worsened even more.
I have a whole slew of persisting sexual effects which are quite embarrassing, but I don’t mind sharing them:
My penis feels numb, and also my testicle area feels numb (there are parts of my penis that are so numb, I can pinch the skin hard, and almost feel nothing).
I have no pleasure sensation on rubbing my penis, pleasureless orgasms (or almost pleasureless orgasms), delayed ejaculation (because of the numbness), almost zero libido, and no physical arousal or excitement when I see a naked woman, no sexual fantasy, weak and unreliable erections, watery semen, and less ejaculate (like only about half the amount that used to, comes out now).
Also an empty and hollow sensation in my testicles; whereas before PSSD, they used to have a feeling of being “full” in some way.
I also have numb emotions. I get no pleasure from listening to music, I often can’t feel sad (just numb; and I couldn’t even cry when my dad died in 2017). I can’t feel feelings of excitement, or enjoy hobbies like I used to, and romantic feelings are lessened/ numbed down.
Also since early 2018 I have needling nerve pains in my genital area, that can be mildly painful, and come and go. Sometimes I don’t have them for weeks, but other times they happen most days.
I also feel genuinely emotionally traumatized by having 14 years of living with the stigma of PSSD; and being gas lighted by the medical profession; and also being disbelieved, and occasionally laughed at by doctors.
I have also occasionally been laughed at and humiliated by my peers, by women, and even by one family member.
The psychological effects of living with PSSD have been as bad as the condition itself.
I don’t so much mention all of this to get sympathy, but more to show the true reality of what it is like living with PSSD.
But I still have hope for recovery, and I think there is a lot of hope for recovery from all protracted symptoms.
Larry says
Spruce:
Thank you so much for the detailed post. I find it to be very informative and helpful. I have been coming to the Rxisk site for a couple years now, and while I have found many posts and commenters to be useful in my journey, your comment here has reawakened in me a pretty good feeling of possibility. For that, I thank you.
Interestingly enough, I’m curious- in your experience, have you ever heard of anyone who came off anti-depressant drugs ‘improperly’ (cold turkey) who then went on to develop a kind of functional neurological disorder?
I ask because in my own experience I have seen little to no mentioning of such cases, and quite personally, I do believe myself to be one of them.
The question that plagues my mind mostly these days is, “how much of what I am experiencing is due to the legacy symptoms caused by the lack of the chemical in my own body vs. it actually being damage caused to the brain/nervous system because of the sudden, prolonged withdrawal?” A subtle difference, to be sure, but an important one
Any thoughts you have would be greatly appreciated. Thank you again for your post.
Be well,
-Larry
Spruce says
Hi Larry,
What are the long term symptoms that you are experiencing?
I have heard of antidepressants causing all sorts of long term problems from their legacy/ withdrawal affects; including long lasting sleep and temperature regulation problems; long lasting affects to appetite regulation; and even long lasting sensitivities and allergies to different foods, and things in the environment, that go on for many years, after people come off; as well as a number of other unusual and bizarre symptoms.
It would not surprise me if what you are suffering from, are legacy affects from the antidepressants.
The best thing to do in my opinion, is to lead a really healthy lifestyle.
A healthy diet, regular exercise, and try to reduce stress, and get good sleep etc.
This will give your body the best chance to heal itself.
Also learning to accept what has happened, and that it may take years to fully recover, and finding the patience to wait for recovery (easier said than done).
When I say acceptence, I don’t mean accepting what has happened is ok, just that this is the situation you are unfortunately in, and accepting it might take years to recover.
Laurie Oakley says
Spruce, thank you so much for putting all of this together. The story of the one man’s spontaneous resolution of PSSD is fascinating.
Laurie Oakley says
Thank you for the positive feedback, Tracey. I can relate to much of what you’ve written here. I’ve heard it said we should not compare our insides with other people’s outsides. Sometimes I think we might feel singled out for punishment when in reality what we experience is shared by many in one form or another.
mary H says
I find Laurie’s post and the comments which follow it so uplifting.
I marvel at the way that, through all their suffering, these individuals find time and energy to inspire others.
There isn’t a hint of self pity or of blaming others for their trials and tribulations – they just get on with what has to be done and explain it all in such a wonderful way.
I sincerely hope that my words, as one who is fortunate enough not to have suffered in the way that they have, humbly offered here, do in some way explain the esteem in which I hold all who must battle on through thick and thin to make sense of a world that has let them down.
By running a group where we offer support to these very people, I do hope that in every way that I possibly can, I provide an atmosphere where they are able to safely come together and celebrate each other’s successes as well as offer comfort to those who are in greater need than themselves. It is a privilege to know and understand their suffering and their coping strategies. Each one is a hero – and deserve far greater recognition, by society at large, than is being offered to them at present.
annie says
Thank you, Laurie
This is a much needed post which asks much of the questions that we have grappled with since our injuries – the nitty-gritty that mostly everyone goes through – it is a long, long journey of self-reflection and I would say, in most instances, one that one travels alone.
Each and every one of us has a unique timeline, a different way of how we approached the fall-out.
Notwithstanding the hurt and pain we just have to look at how so many individuals have picked up the mantle and given their all in the crusade to overcome what was possibly one of the most hellish and hideous challenges it is possible to contemplate.
Why is David Carmichael about to spend months travelling across Canada from Halifax ending in Victoria BC to tell of his experience with Paxil?
Why is Wendy Dolin of MISSD campaigning relentlessly on behalf of her husband Stewart Dolin and his experience with Paxil?
Why did Bob Fiddaman write his book ‘The Evidence, However, Is Clear’ The Seroxat Scandal?
Why did Peter Gordon write copiously and truthfully about his near-death experience with Seroxat?
Why are individuals all over the world ceaseless in their condemnation of the suicidal, homicidal, violence properties of SSRIs?
Why are Mark Horowitz, Michael Hengartner, Peter ,Gøtzsche Robert Whitaker, et al, relentlessly writing and speaking out about SSRIs?
https://bjgplife.com/book-review-evidence-biased-antidepressant-prescription-by-michael-p-hengartner/
Why did Patrick D Hahn, Paul John Scott, Jim Gottstein and David Healy write their books?
https://samizdathealth.org/
Why did Beverly Thomson write her newly released book?
https://www.amazon.co.uk/Antidepressed-Breakthrough-Examination-Antidepressant-Dependence-ebook/dp/B092PWSW8F
Why did we end up tripped up forsaken publicly humiliated?
Scott says
It’s been 12 years of PSSD and although the damage remains, I am able to lead a satisfying life. Of course the genital anaesthesia and silent orgasms are still there, as well as the emotional numbness and other things, but let’s say that these problems have stabilised at a level that is nevertheless acceptable and a long way from the initial period when they were much heavier. I think that the help of a group is really important for those people who have just discovered that they have PSSD because the first periods are psychologically devastating. I think the first thing to do is to tell them that improvements in their condition are possible and they happen naturally but so slowly that we don’t have evidence of improvement when it is already happening. So the best thing to do is to be patient and trusting and not get hysterical even if you are in a horrible condition. Even though you may initially experience a total loss of interest in things you used to enjoy, you should still force yourself to complete small, undemanding activities such as going for a walk or watching a movie. Being able to complete what you set out to do will improve your self-esteem because you can still do it. Getting back on the right track is really a heroic act and you know that sometimes heroes are alone so don’t worry if you can’t converse with your friends like you used to or flirt with people you like, instead now is the time to focus on yourself and take all the time you need to get back on track, with time you will get your relationships back on a good level. Another thing to do is to try to abandon psychotropic drugs if possible because to err is human but to persevere is diabolical. Being off any psychotropic drug will help your self-esteem more than any drug can do and I am also referring to all the supplements we are tempted to take as treatment for pssd. The best treatment is time and the way you spend your time. If you spend most of your time on the internet researching pssd and on forums trying to figure out which supplement to try next, it makes much more sense to delegate this investigation to people who actually do scientific research and spend your time on things that can help you take your mind off things and get back to your everyday life. If you had to take a ssri it’s because before pssd you had other difficulties, pssd added to them but to face it in the right way you probably have to solve those problems first and facing them differently will help you to distract yourself and take back your life.
chris says
Benzos were by far the most difficult for me to come off, went on for about 5 years. All except lithium gave me withdrawl akathisia. It all happened due to a few tablets of sertraline that almost killed me followed by an onslaught of drugging. I have problems typing using a German keypad and swapping to English on it. In almost constant pain in my left hand, typing doesn’t help. Live in fear of getting akathisia again, do not hesitate to move away from people who stress me. What I have been through is utterly horrific in the extreme. “Normal” people don’t really interest me anymore.
Ben says
So, I’m thankful for the professionals who take care of the problem as well as my therapist. I tried tamoxifen ,trazodone, St. Johns worth. Agomelatine. Every new date helps me. Even if it should be only a new idea or hope. To be honest: I won’t accept the problem at all. I am doing Psychotherapie. This helps a lot. But pssd is the first thing what gives me back my depressions, and what gives me ideas to stop my live. Sometimes it’s getting better actually it’s bad. Having a young girlfriend and Havanna no sensation, no Feelings, and no libido is a shame. Maybe I’m going to start Tamoxifen again, maybe I will take agomelatine again. A sentence…. in the past all this medications helped. St john’s worth gave me much Libido back, maybe more than all the others, but it is a risk for pssd, too.
ANON says
Thank you kindly, to all who have contributed to Laurie’s post.
I hope you all reach your state of nirvana.
If residual permanent damage has incurred from medication iatrogenesis, it is something I have to live with.
I am my own doctor.
I know my own body better than a doctor.
I nourish it with healthy foods/drinks and if I don’t adhere to a regime that works for me, I suffer the consequences.
Indeed, my journey of self-discovery and improving my health, the best way I know how, has been challenging and rewarding.
I have had the opportunity to educate myself in the areas of healing and fully appreciate and acknowledge what benefits me.
I was expecting full recovery after twenty years however, I have not achieved the optimum health goals I wanted to achieve.
Do I still have HOPE?
At the end of the day, I have to be realistic and accept the challenges I have to live with.
I am happy I am grounded and have a second chance at life.
Am I a better person as a result of my adverse experience?
My spirituality is heightened.
Having a connection with the divine is so sublime.
My understanding of taking care of my health has been expanded especially on a holistic level.
I surround myself with positive and like-minded people.
I am in harmony with nature.
The gifts of medicine iatrogenesis, are not fully appreciated until you do the full circle of life.
I have learn ‘t to accept that perfection comes when I reach an acceptance of my limitations and have an appreciation for my own existence.
The places, the friendships and the bonds we form with people in life are what make my life enriching and rewarding.
I do not see myself as a victim now.
I view myself as a builder.
This song rocks and makes me appreciate the glory of LIFE.
https://www.youtube.com/watch?v=a5wZV83Je4A
annie says
Acne drug drove our daughter to suicide: Parents of tragic 15-year-old and leading expert beg for stricter rules on how treatment is prescribed to teenagers but fear drug watchdog will not take action
https://www.dailymail.co.uk/health/article-10412051/Expert-calls-stricter-rules-Roaccutane-prescribed-teenagers.html
For Helen and Simon Wright, attending the inquest into the death of their 15-year-old daughter Annabel was always going to be an ordeal.
They were, however, determined to see it through in the hope that the coroner would share their concerns about Roaccutane, the acne medication they believed had driven their child to suicide, and use his powers to order the medical watchdog to review its use in young people.
Instead, at the inquest in Northallerton last month, they were dismayed when the assistant coroner for North Yorkshire declared there was ‘no settled and agreed view’ on a link between the drug’s active ingredient, isotretinoin, and self-harm.
He recorded a verdict of suicide, rather than concluding that Annabel had taken her own life while the balance of her mind was disturbed by the medication.
Now she even despairs of anything positive coming out of an official year-long review of the potential side-effects of Roaccutane, carried out for medicines watchdog, the Medicines and Healthcare products Regulatory Agency (MHRA), which is expected to make recommendations in the coming weeks.
These guidelines refer to advice from the National Institute for Health and Care Excellence in June 2021, which states ‘taking into account … the possibility of psychiatric side-effects’, isotretinoin was recommended for use ‘only in situations when … benefits outweighed the risks’. Professor Chu added: ‘There is no doubt that oral isotretinoin led to an idiosyncratic reaction in Annabel that resulted in her suicide.
annie says
ITV NEWS
Wednesday 19 January 2022, 9:17pm
Call for ban on acne drug Roaccutane after suicide of North Yorkshire teen
https://www.itv.com/news/calendar/2022-01-19/i-failed-her-calls-for-ban-on-acne-drug-roaccutane-after-teens-suicide
Video report by Jon Hill
The heartbreak of the mother of her child, just terrible…
ANON says
It really breaks my heart that acne drugs do not have a black box warning.
There are a long list of drugs that should have a black box warning, as far as I am concerned.
Where are the peoples gatekeepers?
Why are profits more important than peoples well being?
I do not know Annabel’s medical history however, we have no knowledge of knowing if she was ingesting other medicines. We never know the deleterious effects of Roaccutane when combined with another medicine(s).
How do we know Annabel did not ingest a flawed batch?
I feel for Annabel and her parents. Annabel did not have a voice.
I am very tired of the excuses and lies and if there is something that other stake holders need to share with the people of the world ~let it rip!
Our collective hearts are heavy with sympathy for Helen and Simon Wright, for the loss of their beautiful daughter, Annabel.
L says
From “The Golden Girls” Sick and Tired: Part 2 (TV Episode 1989)
https://www.youtube.com/watch?v=963WCmb2_h4
Dorothy: Dr. Budd, I came to you sick. Sick and scared. And you dismissed me. You didn’t have the answer. And instead of saying, “I’m sorry. I don’t know what’s wrong with you,” you made me feel crazy, like I had made it all up. You dismissed me. You made me feel like a child, a fool, a neurotic who was wasting your precious time. Is that- Is that your caring profession? Is that healing? No one deserves that kind of treatment, Dr. Budd, no one. I suspect, had I been a man, I might have been taken a little bit more seriously and not told to go to a hairdresser.
Dr. Budd: Look, I am not going to sit here anymore-
Helen Budd: Shut up, Lewis.
Dorothy: I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you at the beginning of your careers could get very sick and scared for a while, you’d probably learn more from that than anything else. You’d better start listening to your patients. They need to be heard. They need caring, they need compassion. They need attending to. You know, someday, Dr. Budd, you’re gonna be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.
Spruce says
I like the golden girls video L, about the woman confronting her doctor; RE him not believing or taking her seriously, about her chronic fatigue syndrome.
I would love to have a similar conversation, with the it must be somewhere between 10-20 doctors, and health care professionals; that I have spoken to over the last 14 years; who refuse to believe I have PSSD, or that the condition even exists.
It would be especially satisfying to have that discussion with my arrogant, dismissive, ex psychiatrist; who refused to believe the Citalopram he prescribed, caused my PSSD.
Very satisfying.
And like the woman in the video, I am still very angry by how I was treated, and continue to be treated, by the medical profession.
tim says
Is Recovery from medication possible?
Perhaps a considerable degree of recovery, and valuable improvement may be achieved by many. The multi-systems, severe physical injuries resulting from generalised psycholeptic malignant syndrome (following misdiagnosed SSRI induced AKATHISIA) in my daughter’s tragedy were accompanied by psychological, social, emotional and economic injuries of life-changing intensity. Serial abduction and detention with forced drugging, ridicule, contempt, bullying and absence of empathy were detrimental to full recovery, even after ten years. (Please see RxISK; Kidnapped daughter 1 and 2).
What would have markedly enhanced and accelerated recovery would have been for those responsible for this cascade iatrogenesis to have apologised.
I became a medical undergraduate in the late 1960s. We were taught that a prompt, sincere apology was entirely appropriate when the outcome of a medical intervention was not as patient, family and clinician had hoped. I was to make my first medical apology as an exhausted, newly qualified junior resident doctor in 1974. I was working a basic 120 hour week, and had ill-advisedly assured a devoted relative that all would be well after an initially successful (2 a.m.) resuscitation following a cardiac arrest. A subsequent second arrest had been irreversible.
I never found it difficult to apologise to a patient throughout the remainder of a medical lifetime. Whilst I was fortunate that this was not frequent, and I strove to avoid such situations, this approach appeared to lead to some of the strongest patient-doctor relationships experienced.
My experience was that an apology was a powerful therapeutic action, an action that would have made an invaluable contribution to decreasing suffering in my daughter’s situation.
“An apology is not an admission of guilt” we were taught in medical jurisprudence lectures. Why was it impossible in our own patient experience? It would still be profoundly therapeutic a decade later. It would facilitate further recovery.
I am left to ponder in retirement why an apology is not, apparently, widely enough recognised as an important therapeutic option, and not an admission of failure. If there has been failure however, then surely an apology is even more important?
Dr. David Healy says
Tim
This is a very important point. I wonder if things are getting worse. Medical insurance companies make it difficult to apologize. Expressing sympathy for the death of a child because of their terrible illness is a very different matter to grappling with the idea that the treatment might have caused an unnecessary death.
I’m sure it would make a huge difference to people to get some acknowledgement that the treatment has caused the problem – if enough doctors acknowledged this, it would also mean that they would make sure that something was done to make things safer.
David
D
tim says
Thank you Professor Healy, I agree that it would be of great benefit were people to receive acknowledgement that the treatment has caused the problems.
I reviewed a Medical Defence Organisation website this morning:
“Saying sorry is not an admission of liability and in fact it is exactly what patients want when something goes wrong”.
Their surveys ‘indicate that this is happening’.
Is it therefore a reluctance to accept that things have gone wrong which results in our failure to be comforted by an apology? Why does it appear to be impossible for anyone to say sorry after a psychotropic drug induced tragedy?
I perceived (rightly or wrongly) an ethos of defensive medicine during these last ten years: in which the primary objective appeared to be to create an incontestable record of everything having been done to prevent suicide. Laudable in concept, but what if the subject of this process had no mental illness, had never been depressed and had unrecognised, misdiagnosed, overwhelming akathisia? What if all there ever was resulted from serial, adverse drug reactions. ADRs.
If my perception has any validity, might a perceived ‘Suicide Prevention Dominated’, Defensive Mental Health Practice justify Psychiatry’s apparently cavalier approach to deprivation of liberty and livelihood, incarceration in an anti-therapeutic environment, laissez-faire approach to differential diagnosis, labelling-for-life, and the enforced use of some of the most injurious drugs ever licensed for medical administration? Indeed, if such drugs have to be used, why are they not prescribed with an abundance of caution and in a dose-per-kilogram body weight as in Paediatrics?
Was it this perceived defensive medicine that, as a father, as well as a doctor, made it almost impossible for me to identify and to discuss with my daughter’s ‘carers’ the evidence of progressive and life-treating ADRs? At the time, my reason was to minimise the very real risks of retaliation and retribution.
I felt betrayed by my own profession, who in turn I believe to have been betrayed themselves by Evidence DeBased Medicine.
It would not seem inappropriate for these M.H. Detention Centres to all display prominently at their entrance, the following Mission Statement:
‘We recognise that sometimes things go wrong. When this happens we will apologise. You will not be made to suffer detriment and denial in your current, and in your future health care because you needed and deserved an apology’.
With regard to psychiatry, it would appear to be almost impossible to seek redress through the conventional medico-legal processes that would apply in all other medical disciplines. This makes a willingness to accept that things HAVE GONE WRONG and that an APOLOGY has become the critical, therapeutic priority for the injured patient and for their family.
In conclusion:
This decade of avoidable harm suggests a need to ask if our 10 to 12 years of undergraduate and post graduate training to become doctors may create an innate vulnerability to deny iatrogenesis?
If so, does this lead to a reluctance to include iatrogenesis in routine differential diagnosis?
Might this be why those who comment here on their experiences of trying to discuss ADRs with their prescribers perceive rejection, disbelief and dismissal?
This has not always been my own experience. For several years I had a G.P. who could patiently, objectively, and with an open mind discuss and debate these issues. This was a profoundly therapeutic experience.
How can the learning opportunity our dreadful ‘health care outcomes’ be used to the greater advantage of, and greatest improvement in, patient safety?
This is what we want, and why we read and write here. It is in the hope that we may in some small way, prevent others from suffering similar tragedy.
Dr. David Healy says
Tim
I’m sure the medical defence society and similar groups do recommend an apology – but they equally recommend never admitting the medicine you gave could have caused a problem. In fact they pretty well force doctors at inquests and similar settings to deny the drug could have caused a problem. I think there is a serious double-speak here.
The wider culture now sees the treatments as sacramental – and therefore if something goes wrong either the doctor or the patient is to blame.
David
tim says
Serious double speak indeed. What a tragedy for our patients and for our profession. Thank goodness we have RxISK and your blog to identify what is really happening. Thank you for everything you do for all of us.
Dr Pedro says
The GP can’t win. When a patient reports depression and subsequently commits suicide they run the risk of a complaint, whether or not they prescribe. A common feature of coroners’ inquests is that the prescription of antidepressants is glossed over. Coroners, like the rest of the general public, probably assume that an antidepressant is the right thing to do. The relatives are often most grateful for the care and compassion from the medical profession.
Here is a typical story.
https://www.lancashiretelegraph.co.uk/news/19858900.whitworth-father-of-two-found-dead-children/
“A statement from his GP said that Mr Holden [who was found dead on October 24] had been prescribed medication for depression in 2012, but was no longer taking any, however during a phone conversation on October 22, he was prescribed anti-depressants for anxiety and low mood due to the breakdown of his relationship and for financial reasons.”
It is highly likely that the GP (whom I do not blame) had advice from his Defence Organisation in careful wording his statement. In this instance I doubt anyone even considered that the drug MIGHT have been implicated. The Defence Organisations know full well but keep this under the radar. Every week up and down the country similar inquests take place but no one sees the wood for the trees.
Note that in the report of the doctor’s statement the name of the antidepressant is omitted and that “anxiety and low mood” is the diagnosis. Not very thorough.
chris says
Just read your harrowing situation with your daughter. So many people have suffered that – same drugs same abuse, myself included. Your wife made some brilliant observations that many will not notice from the start and with all your experience and knowledge the obscenity of ‘mental health care’ still drove a drug abuse horse and cart of hell through your family.
I predict a member of my family is on the same course with sertraline. I tried to warn them but it’s now in full swing with compliance to the ‘experts’ it will just be drug after drug into more horror and as you say
“This cruelty is typical of psychiatry’s ability to disassociate itself from the unimaginable suffering enforced upon those it professes to help.”
In one more attempt to help my relative and family wake the heck up, I’m going to pass on your reality to them in those two pieces.
Also just to say they will even use the threat of drugging to stop any complaint to the CQC or whomever. Complaining being a sign of ‘lack of insight ‘. It’s really evil.
susanne says
Chris I don’t know the circumstances of the person you mention but this has only appeared recently on the MHRA website. GOV.UK It would be just as easy to put numbers to ‘small increased risk’ why give it to pregnant women at all….
Navigation menu MenuSearch GOV.UK
Coronavirus (COVID-19)
Latest updates and guidance
Home
Drug Safety Update
SSRI/SNRI antidepressant medicines: small increased risk of postpartum haemorrhage when used in the month before delivery
SSRIs and SNRIs are known to increase bleeding risks due to their effect on platelet function. Data from observational studies suggest that the use of SSRI/SNRI antidepressants during the month before delivery may result in a small increased risk of postpartum haemorrhage. Prescribers should consider this risk in the context of an individual patient’s bleeding and thrombotic risk assessment during the peripartum period and the benefits of antidepressants for the patient’s mental health during this time.
From:
Medicines and Healthcare products Regulatory Agency
Published
7 January 2021
chris says
Tim’s reality here:
(Please see RxISK; Kidnapped daughter 1 and 2)
It’s usual for them to blame the patient, in this case they blamed Tim. All so destructive and familiar.
UK Column are now focusing on the MHRA but they have yet to grasp the history and how dreadful and corrupt it is already. There is a push to get drugs out and into humans in 100 days.
They should read Healy and Breggin books.
susanne says
Will this do anything to protect from potential harms?
GOV.UK
MHRA releases guidance in collaboration with Health Canada to improve patient safety in clinical trials through improving the quality of Development Safety Update Reports
From:
Medicines and Healthcare products Regulatory Agency
Published
6 July 2021
The Medicines and Healthcare products Regulatory Agency (MHRA) and Health Canada have jointly published new guidance to improve the safety of patients in clinical trials through improved quality of the periodic safety reports known as Development Safety Update Reports (DSURs). The guidance applies to both marketed and non-marketed medicines that are undergoing clinical trials.
Director of Licensing Division at MHRA Dr Siu Ping Lam said:
This guidance will improve the safety surveillance of clinical trial participants in the UK.
We are committed to working with international partners to increase the quality of the Development Safety Update Reports submitted to regulators.
This collaboration highlights the leading role we take in ensuring the safety of clinical trials globally.
DSURs review the safety of medicinal products used in clinical trials and are produced every year. At present, even though trial sponsors will have conducted assessments regarding safety concerns, these detailed safety assessments are not always included in the DSUR. This makes it difficult for some regulators to find out if all safety concerns have been thoroughly investigated and whether appropriate measures have been taken to mitigate the risks associated with the use of the investigational medicinal products during a trial.
This guidance will improve transparency and ask sponsors to explain in the region-specific information section how they assessed the data included in the DSUR. The guidance builds on relevant existing international standards, including the International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use (ICH) guidance E2F, the Council for International Organizations of Medical Sciences (CIOMS) Working Group VII as well as each country’s relevant clinical trial legislation.
By increasing DSUR transparency requirements globally, patients’ safety is safeguarded, and regulators can monitor how safely medicines are being investigated. This joint publication with Health Canada reflects the UK effort to demonstrate how international collaboration contributes to international research, patient safety and global public health.
chris says
Most drugs will always fail/harm in the long term and greedy human’s will always abuse, lie, cheat and exploit – it works so much better with PhD’s and the best universities on the header, now they have whole govts and countries doing it same time. They start by telling people what they want to hear.
mary H says
Tim, you state ” that it would be of great benefit were people to get an acknowledgment that the treatment has caused the problem”, and I couldn’t agree more!
It reminds me of the time when our son, Shane, under the supervision of David, was reducing his quetiapine medication. He had an appointment with our local CMHTeam to consider a continuation of the out-of-area support. The psychiatrist commented how well Shane looked and said that he’d never seen Shane so alert and able to communicate so well. Unable to keep quiet (!), I ventured to say that the difference was all down to the reduced medications. (I had spent years trying to get them to reduce, rather than increase, the doses without any success).
Before we left the appointment, I asked if I could ask one final question of the psychiatrist – it was “If you ever came across another patient that puzzled you as much as Shane’s case has, would you suggest a decrease of their medication rather than an automatic increase?”
His reply was better than any apology that he could have given, he said “I would certainly consider it, yes” Those words not only pleased me but also made for a far better understanding between Shane and the psychiatrist and built a trust between them that had been missing up to that point.
chris says
When you come off these drugs you can go into a kind of mania, laughing a lot, being very active. So long as you’re aware of what is going on a person can come through it OK – it’s not on the scale of akathisia, but it’s not wise to tell a MH professional – they will put you back on the poison. Most tell the doc what they want to hear.. that they are taking the drug but secretly are coming off. The lucky ones come off no problem and can go back to normal life, but my guess is, it’s not many. Most are now on quetiapine.. it’s one nasty dangerous drug to come off but totally doable. The problem is avoiding stress. People who have had akathisia are more vulnerable to get it again drug free in stress situations and at a lower bench mark than before. This happens because the HM system doesn’t want to know about the situations that caused the problem in the first place – abuse, job, exam, health, what ever anxiety causing insomnia and depression. This is part of the evil.
annie says
An absolutely must watch –
Medicating Normal
Please join CEP for virtual screening of Medicating Normal plus Q&A tomorrow Wed 26 Jan 7pm GMT – free and discounted tickets available: bit.ly/CEP_ADR
http://cepuk.org/2022/01/25/please-join-cep-for-virtual-screening-of-medicating-normal-plus-qa-tomorrow-wed-26-jan-7pm-gmt-free-and-discounted-tickets-available-bit-ly-cep_adr/
Join the Council for Evidence-Based Psychiatry and AntidepressantRisks.org for a virtual community screening of Medicating Normal, a 76-minute documentary film that follows the stories of five high-functioning people whose doctors prescribed pills to help with common problems such as stress, depression, insomnia and grief with devastating impact on their lives. It is the untold story of the serious consequences that can occur when profit-driven medicine intersects with human beings in distress. There will be an interactive community discussion immediately after the film.
This was Angela talking to David
https://www.facebook.com/events/210304034256922/
Join David Healy, MD and Angela Peacock, MSW from the Medicating Normal team as they discuss medical groupthink and why the mental health industry does not believe the patients who have been harmed by it. They will also have a frank conversation about the sexual side effects from psychiatric drugs.