There has been something of a hiatus on posts on DH and RxISK in recent weeks. There are a few reasons – one of them outlined here and one to come next week.
Part of the problem has been knowing what to say to people with PSSD and severe withdrawal. I have been swamped with emails that are terribly difficult to answer. It would be good to get input from readers on this topic.
One of the things RxISK can offer someone with PSSD, Post Ro-Accutane Ssexual Dysfunction, enduring withdrawal problems or a range of other problems is recognition. Yes this drug can cause that problem. Simple recognition can be helpful. In legal settings an endorsement can be life-changing.
But in day to day life, for someone with withdrawal problems in particular, a diagnosis brings an expectation of more – that we can do something to put things right. By the time people come to RxISK with queries or come to me in a clinic in North Wales, many of them have tried all the obvious options – slow tapering, switch to liquid, exercise etc. – and they are still having problems. They, and sometimes their families, have begun to tire.
“You’re now going to tell me what to do to sort this lunacy out aren’t you?”
Stuart Shipko, a physician in California, caused a huge stir some years ago when he bluntly said that SSRI and other withdrawals are incurable. Many of the forums doing invaluable work supporting people with withdrawal problems were upset. This was too negative a message.
In the same way, there are regular comments on the PSSD posts here that we are being too negative spinning the condition as one from which recovery will be slow or even glacial.
So while getting a diagnosis beforehand sounds great, for some people, when they realize the situation, its a bit like getting a positive HIV blood test result back in the days before triple therapy – it takes away hope rather than helps.
These issues get complicated by some of the forums that are otherwise doing good work who have a line in selling remedies. The selling can be harmless for people who are going to recover anyway. But for people who aren’t going to recover easily it can be as cynical and greedy as the selling by pharmaceutical companies that has landed people in these predicaments in the first instance.
The New Scientist recently featured an article about Antidepressant Tapering Kits. The people behind this are all good. It doesn’t seem right to quibble with someone who is trying to make things better. But the problem is tapering is not the answer for everyone and even for those it can help, it might have to be vastly slower than these kits suggest. The worry is that people with a real problem will end up feeling they are to blame if this one size fits all approach doesn’t fit them.
The basic problem is we don’t know enough – just as with AIDS in the late 1980s.
Not having an answer makes it very difficult to direct these patients to the RxISK e-Consult site which charges a lot of money for a consult. A RxISK consult can be worth it for a report that will make a big difference for someone if they can put it in their medical record. Its a lot harder to suggest this as an option for people who get in touch with enough details to make it clear that an honest response from us is going to be pretty gloomy.
But not suggesting a Consult gives a message also – that you are in a grim situation and there may not be much that anyone can do. Putting this in an email seems heartless.
An email or a consult that soft soaps the problem and is encouraging doesn’t seem right either.
At the end of the day people with PSSD or enduring withdrawal are in a position not completely unlike that of AIDS patients 25 years ago.
What AIDS activists showed all of us is that if those affected hang together, if they organize, they can force the establishment to change tack.
They also took things into their own hands rather than sat back and waited for experts to come up with answers – and they were up against real virologists and real clinical trialists. Those of us with PSSD or enduring withdrawal or most of the problems that psychotropic drugs cause are up against figments of a marketing departments imagination – Professors of Serotoninology etc.
Another issue at play here regarding which people with PSSD and people with withdrawal from Lyrica or Zyprexa and all drugs in between are better placed than people with AIDS were is that the key issue is not rocket science its Why Don’t you Listen to Me?
As many comments and posts, most recently Spruce covering PSSD, bring out doctors and others for some reason don’t listen and don’t see. Its one thing to have no answers, its quite another not to listen. This rather than what goes on the brain is the mystery.
It seems wrong to blame people in withdrawal or with PSSD for this but in my opinion we unwittingly contribute to a mistaken turn to experts when we figure that the answer lies in latest brain scanner – this comes through in comments from Heather and Mary after a recent post. I was called on to answer but haven’t.
It’s as understandable that people think the latest high tech might offer an answer, as it is that people think a glass of cold beer or chilled wine looks good on a hot day, but these are all temptations to resist. The problem is why aren’t you listening to me. No brain scanner is going to provide an answer to this. And people without a medical degree are at least as well placed to offer answers to this mystery as those with one.
It seems highly likely to me that the problems in PSSD and withdrawal are in our bodies not our brains. But it needs great descriptions of the problem, probably involving collaboration between sufferers and medics, that are endorsed by all concerned before we can begin to decide whether we should be looking at peripheral or central nerves.
So the question is why are these conversations not happening.
This is the question that people who come to me need to answer. Until this gets sorted I am not in a position to magic answers to anything else out of thin air. I get help from people who are helping themselves, and maybe can add a little to what they are already doing. Some of them have been suffering for 5 or 10 years but they email me regularly and update me on things that look like they might offer leads. It is clear they aren’t about to give up.
I have difficulties when people drop a problem in my lap, especially when there are hints they are going to be angry when I tell them that its people like them who are going to have to help me help them and others like them.
Any thoughts anyone has on how to deliver a message like this without causing too much disappointment would be very welcome.
Can you tell us what is the reason you think that PSSD is in body (peripheral or central nerves) and not in brain? I’m just curious, because many people with PSSD report significantly blunted emotions, inability to feel alcohol, coffee, head pressure, cognitive problems along with genital numbing, and the case is the same for me.
Unfortunately most of the psychiatrists are not helpful at all and they don’t want to listen their patients because they don’t want to face the truth that all of their pills can cause these severe permanent damages as this would destroy their business and basically the only tool they have…
On the business front, I would figure your job is to persuade your doctor he is going to go out of business if he doesn’t listen to you and recognize drugs can cause problems. If they work wonderfully well and are free of problems, nurses and pharmacists are cheaper prescribers and will replace docs soon, so its in his interest to recognize that you might be saving his job.
On the peripheral front, the first thing anyone notices with an SSRI is genital numbing – if they check. Within 30 minutes. So the sequence genital numbing to loss of libido and permanent genital numbing to permanent loss of libido makes at least as much sense and likely more than the other way around. Ditto for emotional numbing leading to depersonalization.
We are in an era that might be more Cartesian (dualist) than any other has been. There is vastly more of us in our bodies than we recognize at present and less in our brains than we are inclined to think. It might be more productive to regard the brain (at least the male brain) is a glorified relay station rather than the spot where all the key action takes place.
But i saw so many people has deleyed pssd?
2 weeks after discontinuation.
What makes escitalopram and citalopram probably the most common PSSD culprit?
That s makes me wonder.
As for doctors…they can admit it to me or not that it is from ssri…i m not gonna waste time and money anymore.
I think the solution will start from victims and their supporters, (doctors or other healthcare workers who listen and are willing to help) and the first most important thing is increase awareness of the society on the harms psychiatrists do to people every day (PSSD, PGAD, protracted withdrawal syndrome, neurotoxicity, Parkinsons, tardive dyskinesia, akathisia, school shootings, violence etc.) so less and less person would trust their treatments anymore. I think this has started already, but still much more awareness is needed like writing in newspapers our personal cases, sharing PSSD studies etc. Then, I hope they will be forced finally to acknowledge these serious issues and make fundamental changes in their profession and they will be forced to deal with the problems they created together with pharma companies. At least, this is my hope.
What is your current theory, what mechanism can be behind this genital and emotional numbing? Are you leading studies now about the causes of PSSD?
Not at all sure that individual psychiatrists are moved by the prospect of their “going out of business.” The number of new psychiatrists is in steep decline; I have read that currently practicing American psychiatrists have an average age of sixty. For the older ones, the option of a slide into a “concierge” cash-only practice catering strictly to the well-to-do seems like a comfortable, even lucrative, option for their last decade or two.
The limited numbers of younger practitioners are being groomed for a strictly supervisory role in large medical groups and mental-health clinics, in which spending more than ten minutes with an actual patient is mercifully rare. In many areas, psychiatry is the province of foreign medical graduates who chose it only because they were frozen out of more “desirable” residencies. They chafe at their lower rank, more modest salaries and the derision of their peers in more lucrative specialties, and would jump at the chance to switch. As in pathology, the other “residency of last resort”, it often attracts only those who see avoidance of prolonged patient contact as a drawing card.
Good afternoon to you all … im 20, I was born and bred in Madeira island, Portugal and it seems like I suffer from PSSD, i have found this out like perhaps 4 months ago. I Will tell you a part of my antidepressants story… when I was 17 there were some events That made me feel depressed so one day I decided to kill myself, no one found out however 4 days after my 1st attempt, I tried my 2nd attempt and things were uncontrolled so I decided to tell my bestfriend about my attempts, he of course reacted badly and took me to a nurse, I got things off my chest and then she advised me and opened my eyes to talk with a psychologist and so I did, after 3 weeks This psychologist told me she wasnt capable of helping me alone, I was then first sent to a general doctor who prescribed me antidepressants, I took one a few hours after I bought these, I started feeling even sadder im not sure if it was due to the medication it doesnt matter though… and I decided to take 6 more, 4 hours later i was shaking a lot, my hands wouldnt stop trembling violently. I arrived home and closed my rooms door, my psychologist had a bad feeling and decided to call my dad and tell him about my appointments, then he told my mom, she came to talk to me and found i had taken 7 antidepressants as my bag was open with its box . I was taken to the urgencies, I was as much as it may sound strange I was feeling physically alright except for my hands all shaking I was given saline solution for about an hour I looked alright But it wasnt enough saline next day i was shaking a lot… my dad took me to the hospital, a pedopsychiatrist saw me and sent to a psych ward for teenagers, took some more saline solution and started giving me sertraline… I took these antidepressant until october of 2015 and started in january of 2014 for 3 months I felt so happy, and felt so much sexual pleasure it was incredible but then yes 3 months because I had some problems and wasnt brave enough so this time in january 2016 I was given again sertraline… i always complained about my sexual life to my psychiatrist, She didnt care at all, she used to say there were more important things than sex… I felt badly at the time when she told me that, so I thought it was only a temporary effect and believed in that, ignored the subject for a few months or at least tried to, then some other problems started arriving memory ones, cognitive ones… I Was constantly repeting the same questions after i just asked, this wasnt normal My memory had always been a fantastic one, there was a time I could know by heart all the elements of periodic table when I told this to my doctor, she basically prescribed me vitamins and said it was because i was still feeling depressed but I wasnt that depressed anymore, life was going alright for a few months. I told to my psychologist about sexual problems and cognitive ones and told her maybe Was due to medication and not depression, and again no one believed me. In december of last year I told myself ” that is it !! It is enough” , i stopped medication gradually , finished in january of 2017( and again january hehe it follows me) i only told my doctor in february, She wasnt very happy, but She knew i was in Charge of my life so didnt Say much. She wanted to see me in May, I told Her about the same problems and blamed medication at that time I had already found about PSSD but hadnt known yet there is no cure… She started saying i was paranoid and should start taking my medication again… and That was the last time I talked to her, not really interested in talking to her anymore as She ignores my feelings and solves them with medication. Almost 6 months have passed since I left medication I still have the same problems i never talk to anybody I know about these as they will make up excuses such as anxiety, depression for my sexual and cognitive problems and not point out the obvious cause :/ im Not depressed anymore… i just want like all of us suffering from PSSD a solution, It is not fair living like this 🙁 im sorry if I look like a spoiled young female im just so frustrated, as much as we try to deny this sex is important in our lives. I just wanted to leave my story here …
I have suffered from Withdrawal syndrome for 5-6 yrs and have managed to stabilise my symptoms by switching to 100Mg of Amitriptylline at night – its not perfect but it allows me to function fairly normally.
I believe this is why withdrawal affects so many parts of the body (quotes from Wikipedia article on Serotonin):
‘serotonin is primarily found in the gastrointestinal tract (GI tract), blood platelets, and the central nervous system (CNS) of animals, including humans…
Approximately 90% of the human body’s total serotonin is located in the enterochromaffin cells in the GI tract, where it is used to regulate intestinal movements’
I think about 5% of Serotonin receptors in the body are in the brain and about another 5% in the cardiovascular system.
The most distressing symptoms I experience are Gastrointestinal ones and occasional intense episodes of anxiety when anxiety would normally be experienced, but grossly magnified. I have found psychological ways to help me manage these episodes rather than resorting to taking a benzodiazepine (Librium) which gives me almost immediate relief.
For what it’s worth, I believe that helping people to understand the truth of what is happening to them can actually be helpful rather than otherwise. Their anger is not about the truthteller but about the injustice of their suffering.
I have written this in some haste so please do correct me if there is anything you disagree with.
After reading this page, i do understand where Dr Healy and the Rxisk team are coming from, in that they dont have all the answers, and that, in many ways, they are in the dark as much as the rest of us.
I also do appreciate that they are doing the best they can to help people who have been left with PSSD and other protracted withdrawal symptoms, while the rest of the medical establishment are mostly ignoring our suffering, and sticking their head in the sand. I have a lot of respect for Rxisk for doing this.
What i am not sure i totally agree on is the bleak view that PSSD and other protracted withdrawal symptoms are more often than not permanent.
The reason i say this is that i have been a member of a number of withdrawal forums including surviving antidepressants, and benzo buddies, for many years, and i have seen quite a lot of credible recoveries from PSSD and also other protracted withdrawal symptoms, where in some cases it took many, many years, for full recovery to take place. Sometimes up to 12 years, but eventual recovery, or recovery so close to full recovery it didn’t affect the quality of life of the person, eventually happened.
I have also attended BAT or battle against tranquilizers in bath and bristol over a four year period, and have seen many people who were convinced they would never recover, suffer for many years with protracted withdrawal symptoms, to then go onto eventually recover, and put the whole unpleasant experience behind them.
I have also spoken to a GP before, who was an ex psychiatrist (the only doctor to have ever acknowledged PSSD to me), who told me that a number of his ex patients developed PSSD, but that eventually they reported to him that they had recovered. He told me that it took them years to recover.
I tried to get him to talk to my psychiatrist about this, but his attitude changed very quickly when i asked him to talk or write to my psychiatrist about PSSD, stating he could get in trouble for putting things in writing about PSSD, and that he would have to speak to his defense liason team.
I later tried again to pursue the agender of him talking to another medical professional (Dr Healy this time) about PSSD, through my advocate, but he wrote back politely refusing. I always got the impression from him that talking about PSSD was something that made him very uncomfortable.
I have seen enough with my own eyes, to believe that PSSD, and other protracted withdrawal symptoms, aren’t always permanent.
Despite this i do believe that PSSD has the potential to be permanent, and that PSSD and some other protracted withdrawal symptoms may end up being permanent for some people.
Regardless of whether PSSD and other protracted symptoms end up being permanent, the fact that they can last for many years, sometimes even a decade or more, greatly disrupting a persons life, is a travesty in itself, even if eventual recovery does happen.
Also this whole invalidation and grand scale ignorance and denial of protracted withdrawal symptoms, has to stop. It greatly adds to the distress of the person suffering protracted withdrawal, and they are often left with no where to turn.
As i have mentioned before, nearly every doctor i have spoken to over the years (apart from one) has been clueless about PSSD and protracted withdrawal symptoms. Finding one that does know about PSSD is like finding a needle in a haystack, and even then if you start asking them to talk to other professionals about it, they often get nervous, and try to avoid doing so.
So you first have the very difficult task of finding a doctor who knows about PSSD, and then if you do manage to find one, you have the next difficult task of getting them to discuss it officially with other doctors.
I suppose the point of my comment is that i feel from what i have seen and experienced, that taking the view that PSSD is most likely always permanent, is a little too pessimistic, and that a better approach would be along the lines of, “for some people it might be permanent, but there is some anecdotal evidence that some people might recover”. Or simply ” the prospect of recovery regards PSSD is largely unknown, and we dont know if it is permanent”, rather than “its probably permanent”.
This is the message i felt i got from Rxisk, i.e “that its probably permanent” (apologies if i was wrong), and although i agree being honest about the possibility of it being permanent is important, i dont feel the possibility that some people might recover, should be dismissed either.
An excellent post – and thank you for explaining so much which, in turn answered many of the questions that we previously posed. I think that you’ve hit the nail on the head when you say that there still seems to be a wide gap between ‘them’ ( the professionals) and ‘us’ (Joe public) and that whilst that gap is there, things will not change.
I feel that we ask questions out of sheer frustration. We have found a willing listener in you, hence the questioning! I’m not sure that the lack of answers is the main point here. Yes, we ask our questions – questions that we have asked many times before – questions that we DON’T KNOW whether there is an answer out there already or not – simply because, despite the asking, we have never (before) had them answered. Now, in this post, we have the answer – that NO ONE really knows the answer as yet. I can accept that. I find it so much easier to deal with this response than I have in the past with the silence that I faced when such questions were asked. I guess that some ‘professionals’ would rather hide their lack of knowledge than admit their need of our support to, hopefully, solve certain baffling conditions.
I totally agree that it is much fairer to be totally honest with people – there again, we find that the majority of ‘professionals’ would far rather lie to their patients than confront them with the truth. Gone are the days when cancer was a whispered condition that doctors would hide from patients. With the openness has come a far better understanding of our role and responsibility in leading a ‘cleaner’ life. Cancer is still with us, of course, but we no longer cringe at the utterance of the word.
I feel that issues such as withdrawal/ PSSD etc. are still at the level of the ‘whispered word’ – and that is where our frustration stems from.
As for hope in a state of helplessness, maybe our role, as amateurs, could come in handy here. We are able to, quite honestly, provide ‘hope’ since we are not experts in the field – whereas, if you were to provide lashings of hope, it may be seen as a nod towards the mistaken belief that you have the answer but are, as yet, not willing to share with the rest of us.
It seems to me we are in desperate need of information-gathering and sharing. One of the problems is that people who have problems with antidepressants, and then quit successfully, tend to disappear into the crowd. They may “hang out” and comment in online forums for a few months. They may retain a conviction that the drugs’ dubious benefits are not worth the risks. But they’re not around—especially not on RxISK. This includes both people who taper off the drugs, and those who quit more-or-less cold turkey.
How many people end up with protracted, disabling withdrawal syndromes? What, if anything, do we have in common? How many people quit cold-turkey? How many can’t quit cold-turkey, but do succeed in tapering? In order to figure out some answers, we need to know. (I myself have been in both “boats” – having successfully quit duloxetine on a rather rapid home taper, then been hit with major problems quitting prescribed amphetamines and MAO inhibitors. In both cases, my experience has been the polar opposite of others’ experience, and we struggle to believe one anothers’ stories.)
Like you, David, I’m a skeptic of tapering kits. I was particularly dubious of the petition to get the drugmakers themselves to issue them, although the guy who started it seemed utterly genuine. It seemed to me it would be in companies’ interests to design inappropriately-rapid tapering kits that were doomed to fail in many cases. This would allow them to discredit the whole notion of protracted withdrawal as a fiction clung to by people whose real problem was their underlying anxiety or depression.
Yet I am not ready to call tapering a phony cure or a distraction. The reason? So many millions of people have no access to it. They’re not even allowed to know it exists. I know of no one in the United States who has access to “liquid formulations” of the drugs, and only a few whose doctors have agreed to supervise a gradual taper. Instead, it’s common for people to be advised to try taking the drug every other day and see what happens. When this fails, they are usually told they have proven that they “need” the drug to achieve normality – or, worse yet, that they are simply too weak and neurotic to confront “life on life’s terms” without their comforting drugs. Meanwhile the drug companies refuse even the most moderate measures such as bringing out their pills in lower doses.
Clearly, it’s destructive for anyone to try and suppress evidence that tapering fails to solve some people’s serious problems – whether because they think it “sends a negative message” or for any other reason. But it would also be destructive to suppress evidence that tapering does work, or to regard anyone who advocates it as a tool of the Enemy. Somehow, we have to come together and get the facts, whether they confirm or challenge our prior beliefs.
Regarding James Moore’s push for tapering kits, I feel that he’s opened a door that was previously closed – the ‘door’ of possibility if only given a different chance. His own withdrawal problems led him to look at the possibility of alternatives. Anyone going through a difficult withdrawal has, possibly, felt that smaller steps would be helpful but found the lack of variety in tablet strengths frustrating. The idea of suggesting that pharma companies should be the ones to provide kits was not his best thought ever – as he himself now accepts.
What he has found – the information now provided in English too – is a step in the right direction I think but, like you, Johanna, and David it is far from the complete answer. As each individual needs to work their own withdrawal path, wouldn’t it be far simpler if the strength varieties of these medications was extended? The part that struck me, mainly, was the way that these kits seem to suggest a DAILY taper – that, I’m pretty sure, is an impossible task for anyone finding withdrawal a struggle.
Having said that, let’s not knock it totally – at least it’s GOT US TALKING about a difficulty that is so often ignored!
Trying for so long to heal I have sometimes forgotten that my life is more than merely physical. After more than a decade of trying every remedy under the sun to heal the damage from meds, the feelings toward those medical doctors and others who ARE NOT LISTENING can be overwhelming.
I’ve come to believe it’s a grief issue, and no one does grief well. Doctors want to make a difference, not sit with you when the difference they made was a disaster. They just can’t hack it so they’ll offer useless solutions, or find ways to blame you, like when you tire (as mentioned above) and do not have the energy to keep trying stuff you’ve already tried. They have no room to HEAR how you’re feeling, or SEE how you’re coping, often heroically.
When it comes to these particular issues, doctors aren’t listening but certain others will. Not a day goes by that I don’t suffer the effects of meds I quit taking over a decade ago. This is worse than depressing so I decided to start tackling my grief using a particular method with others (and no one profits). Perhaps healing socially, emotionally and spiritually will lead to some physical changes. Either way, I’ll feel better.
I also want to say I appreciate that RxISK “goes there” when it comes to talking about what’s really happening. That word above, RECOGNITION, is huge for some of us. The “hope only” sites make it essential that we get it here.
I’m again with Spruce, Mary and Laurie’s comments here. No one surely is castigating DH for not having all the answers. But an attitude of verbal compassion and above all HOPE can help a damaged person find a reason to go on trying to live their life the best way they can. There is ALWAYS hope. In the direst situations, there is hope that things will get better or take a different turn which will throw up unexpected benefits. Yes, we want to be listened to, but we want those listeners to have the guts to stand by any beliefs they share with us and be counted with us in discussion and word spreading. Obviously DH does do this, hats off to him, but as Spruce points out, other doctors seem afraid to do so. What are they so afraid of?
The person who made the most difference to our son when he was lacking confidence, struggling to cope with peer bullying about his acne which had caused PTSD, was a psychiatrist who was very honest and unusual and showed him that he was not alone, he was not feral like these individuals, who he showed him, were actually worthy of his pity. He suddenly realised that he REALLY was not alone. Other thinking people were just like him. C.S. Lewis said ‘we write, to know we are not alone.’ We might say here on RxISK, ‘we blog to know we are not alone.’ Being alone without hope is being in a void, and being there long enough can lead to suicide. We know, we watched it happen. For 11 years, despite horrendous medication side effects, our son kept picking himself up and going on, because he had HOPE that things would surprise him some day and get better. He also said that love and empathy carried him through the worst of times. But finally sadly there was just one psychiatrist who took away all hope by delivering two 45 minute tirades, and spoke totally and convincingly negatively in a hypnotic style when our son was struggling with the fogginess of psychotropic medications. Hope flew out the window. We couldn’t over ride the bombastic convincing nonsense spouted by the psychiatrist. Our son believed him, gave up on himself and his hope, and died. Hope is a magic ingredient. We all need a touch of magic now and then.
There is so much in the replies here that I wish to comment on – I hope I won’t bore you with them!
Spruce – you wonder why drs. etc. fail to listen – or, even worse, totally disregard patients’ complaints. I feel it’s the ‘whistleblower effect’. Let me illustrate:- Roughly 13 years ago, our son, Shane, went to a GP appointment which happened to not be with his own GP but a partner in the practice. I was also in the room as Shane was too poorly to explain his own situation. He’d had an adverse SSRI reaction 2 years previous to this and was in a very dark place. This particular doctor LISTENED to the whole tale ( aided by his computer notes of course!) and, upon realising that the SSRI in question was the third brand handed out to Shane in less than a month ( changes due to suicide attempts) and the tragic results on the third one, he blasted out “I’ve been telling my colleagues here for years that SSRIs can cause this type of havoc to some patients – now they’ve seen it for themselves”. What exactly followed as we left the surgery, I’ve no idea but that particular doctor left the practice a few days later – decided to leave or pushed out? I’ve no idea which but I have no doubt that his feelings would have been made known to the other doctors. If THAT is what happens when you share your beliefs, is it any wonder that they dodge the issue?
Heather – you know that I have every sympathy with you over everything that happened to Olly, including his untimely death – there, but for fortune, we’d have gone too. Having said that, I do feel however that the problems with life, for Olly, as for Shane,began outside of the medical intervention. The medications and lack of sympathetic encouragement certainly added to their personal perceived weaknesses – but I tend to place as much blame on our educational services as any other area for this. Having felt a failure from age 6 ( when we first realised Shane was dyslexic) due to a lack of acceptance of his problems and lack of additional support; the continual push to ‘concentrate’ and ‘give of his best’ caused his low self-esteem to flourish. He had to wait until he was 19 and at college to get RECOGNITION ( that word again!) of his problems and full praise for his efforts to accept and overcome them. As the funding was there, he was supported and given counselling sessions. Had this been provided from the age of 7, I feel that the Shane of today would be far better equipped to deal with ‘life’ and all that entails. All schools should be equipped to support their pupils to overcome the rigours of ‘bullying’ etc. I fear that the latest ‘teacher to support mental health problems in every school’ idea is hardly going to help matters. It could well rise the number of youngsters on medications but that is hardly the answer is it. More needs to be done on relationships and acceptance of differences – it doesn’t take an ‘expert’ or specially trained teacher to show pupils that we are all different but equally acceptable nor to help pupils to know the damage that a hurtful comment can do. The only thing that teachers need is to be allowed time to cover this important area in children’s progress – time , which at present, is only allowed for pushing pupils towards their ‘ end of year tests’.
Having said all that, we are where we are and, from this point Shane moves slowly on,with encouragement ( or hope which means much the same surely) and a listening ear from all now supporting him. He can still be very easily disillusioned and continually worries about a variety of issues which cause severe anxiety and its accompanying ailments.
Carla – your comments re:-modern – day behaviour is indeed worrying. So many feel that they are worthless in the eyes of society that they develop an attitude towards others that reflects this. It’s said that negative attention pleases a child in the absence of positive comments and I feel that this is the present picture with those way out of their childhood who show disregard to all around them – be it other humans, animals or nature. The same disregard is shown towards themselves – hence the over-indulgence as regards street drugs etc. Stopping to think about this – can we really blame the individual? Isn’t the thought of an imprisonment rather welcoming if you’ve no home, nowhere to call your own, no more than a bagful of belongings coupled with the threat of sanctions if you fail to turn up to meet your ‘superiors’ at the Job Centre? We only have to look at the plight of the Grenfell Tower survivors to see how little some sections of our society mean to those in power. The back-stabbing in Westminster goes on while the survivors await the news of having somewhere suitable to call ‘home’.
Changing society is a massive ask, that’s for sure and that goes for their attitude towards the ‘truths’ in mental health too. I was horrified to read the nastiness that was aimed at Bob Fiddaman recently – merely because he pointed out the untruth of the ‘chemical imbalance’ notion. It was totally uncalled for – not that it will stop Bob speaking out of course! but it illustrates exactly what tends to happen to those who are brave enough to continue to fight in our name. I look forward to next week’s Panorama ( as notified by Annie recently) when, it seems, the SSRI questions will resurface – thanks to Katinka I presume?
Some professionals, have denied the fact that problems can occur with any given medicine.
I believe, many are sweeping under the carpet, a systemic issue, that impacts all.
If denying problems is the answer, I believe we are adding fuel to fire.
Aggression, violence and unpredictable behaviour is also on the rise.
If some professionals don’t acknowledge that these meds, (including recreational drugs) cause issues, we are only going to see more of these rxisky behaviours, on the rise.
Johanna, highlighted some very important facts.
Creating an awareness over the media about these issues, is rarely seen or heard.
We always here about the pros about particular meds however, can rarely engage in a civil debate on how these particular meds impact some people’s lives.
If we want to start creating an awareness, those who gather information, should be able to spread the word without having bits and pieces censored.
I don’t believe that this systemic problem, that we are dealing with, will go away overnight (we have been dealing with if for way too long now) however, I do believe that if people who have been impacted by these meds and have had no other channel to express themselves, apart from coming here, can create the necessary changes, than this is something.
Ignoring, ridiculing, labelling and chastising individuals who are trying to educate the populace, is futile and counterproductive.
As a human race, we have to start taking some accountability and responsibility for what is happening without placing the blame on those who are trying to get their story out there.
If patients are not taken seriously, where the hell do they turn to?
Systemic violence is on the rise and professionals are not immune from it, either.
We do not tolerate aggressive behaviour in a public setting so why should it be condoned in a private setting (institution) especially, by the very people who are meant to take care of our us.
We manage rxisky behaviour when patients turn on professionals however, what if it was the other way around? We never hear about these stories, via media.
People need to be heard and if organizations are using the law and lame excuses to not deal with problems in our society, then we have to ask ourselves these questions:
Why are those gatekeepers who are meant to benefit society being dismissive and so impertinent?
Who are we trying to protect?
What is the role of these organizations, if important issues are swept under the carpet?
Who does it benefit when organizations, professionals and those who are meant to take care of important issues that impact our health, fail us?
At the end of the day, when there is no transparency and the people who highlight a dysfunction are made to feel like the ‘whistle-blowers’, I would prefer to have the so called ‘whistle-blower’ on my side especially, if they are trying to pave a better way.
We all play a part in how we want services to take care of us however, if the very structure is failing us, who is to blame?
Organizations, have to start taking accountability and responsibility for systemic abuse.
Like the church, who has covered up their dirty linen for so long, there will be a time and place, when those who have wronged people who have put in legitimate complaints about their concerns regarding the safety of medicines, will have their concerns validated.
Pointless, having systems that don’t represent the people who have been impacted by unscrupulous organizations.
Condoning a culture that breeds negative behaviour is only going to become an acceptable breeding ground for more negative outcomes.
Thank you for the question Dr Healy
We the sufferers of withdrawal will one day be more prominent in the wider world once there are sufficient numbers of us to voice what has happened. As a long term nearly 6 years sufferer of escatalopram withdrawal and recently 8 months pregabalin , (before I knew of these phenomenon), I have had to research so much and take control of my own healing because my GP although he tried had no clue. So what do we do to help ourselves … support each other through FB groups lean on each other when the struggles get too much listen and learn from those further down the road than ourselves and support those who are coming up behind us… when my GP referred me to a psychiatrist to make a referral she agreed to my face and then he phoned me at home and told me she said no referral… when already walking a tight rope holding onto the hopeful window to avoid the balck waves lack of trust can be the catalyst for severe emotional trauma… The answer is out there in FB groups.. this is the place where real suppor prayers and empowerment ca be found.
Mind also have a fantastic support group – for all MH problems, not specifically withdrawal – called ‘Eli, orEle, friends’ ( Eli is an elephant!).
“In the same way, there are regular comments on the PSSD posts here that we are being too negative spinning the condition as one from which recovery will be slow or even glacial.”
These people are idiots. You shouldn’t believe what everyone says. There are several people who never had PSSD, never read the PSSD literature and still want to tell that PSSD is often not permanent. These are either people who think that permanent PSSD does not exist/is psychosomatic or people who think that PSSD is withdrawal or people who are proponents of alternative practitioners. Nearly nobody recovers completely. There is really no evidence that people with PSSD recover. And that’s also what the literature says.
Compare the number of PSSD users with the number of users who likely(!) had PSSD and recovered completely. And most people likely forget how it was before PSSD.
“No brain scanner is going to provide an answer to this.”
Maybe not, but it will possibly show differences. This would be extremely important to get PSSD more recognised which would lead to much more PSSD studies.
“It seems highly likely to me that the problems in PSSD and withdrawal are in our bodies not our brains.”
Not in my case. When I got PSSD I noticed that I couldn’t access certain areas of my brain anymore. Since PSSD I also can not perceive depressive feelings or fear or tiredness or euphoria feelings in my brain. And sometimes I noticed pins and needles in my genitals when I tried to access the areas that I can not access anymore. Moreover many people with PSSD have emotional blunting. And with emotional blunting we don’t mean indirect emotional blunting caused by stress due to sexual dysfunction, no, it’s direct emotional blunting that even blocks the feelings of music in the brain. This emotional blunting has NOTHING to do with indifference that depressive people have.
I do believe honesty is the most important thing. I have been a member of BenzoBuddies and similar groups for 3 years. Many in these groups promote the idea that everyone heals from benzodiazepine withdrawal, to the extent that it is said to be “a fact”. I have never personally believed this and always say “most people recover” as that seems to be what happens. Even if only 1% do not recover it is wrong to say that “everyone recovers”. Holding out false hope can make people very angry when they find themselves very protracted and with little sign of recovery. So while it is important to keep hope alive, it is also important not to hold out false hope either. It gets easier to accept that one might not recover as the years pass. I am now at 4 years 3 months, physically and cognitively disabled. I took a benzo for 40 years, also antidepressants including SSRIs. I have no idea if SSRI withdrawal has contributed to my protracted state. I withdrew from the benzo first and was extremely ill before tapering off Effexor. I didn’t notice much difference in my symptoms. The dishonesty of my doctors has astounded me. GPs and consultants alike. I know they are simply protecting themselves from possible litigation but I do not see how this fits with a medical code of ethics. I am a black and white kind of person, honesty is honesty in my book. So my doctors say they have no idea what is wrong with me or they tell me flatly my symptoms have nothing to do with withdrawal. I find this even more unacceptable than the harm they have done to me by prescribing the drugs for 40 years. Dishonesty is deliberate. I do not seek answers or treatment, it is however extremely important to me that I have a written acknowledgement that the horrendous 3.5 years in bed were due to benzodiazepine withdrawal. I think it is the least I deserve. I have never been a vindictive person but the behaviour of my doctors could turn me into one. To deny abuse, for that is what it feels like even if it was unintended, compounds the deep distress felt by the victim. We have been duped by the drug companies, duped by our doctors, so honesty is the thing that we crave most … I believe.
Fiona, thank you. You’ve said it well.
Your AIDS analogy is an interesting one, and you are quite right, after all this time it is quite clear there are no “experts” on the subject of harm caused by psychiatric drugs. Other than the level of which we have bestowed upon you, of course. I understand the frustration you must feel with that responsibility.
I think that as a community we are mobilising, and organising as best we can, but we have a number of disadvantages that we are having trouble getting past. One key one is that the very people who could help us are the people who did the damage. So when it comes to the questions that need answering, such as: How do antidepressants work? What alterations do they make to the body and what are the short and long-term ramifications of that action? etc etc, the people who are the closest to knowing the answers are the very people who don’t want us to find out. And will go to any lengths to stop us.
So we’re a bit stuck.
I imagine that during the AIDS epidemic there were groups of doctors, specialists and researchers who put their prejudices aside and worked for the good of their patients to find a cure. Here and now, there seems to be an absence of empathy for those harmed by prescription medication which seems to permeate all society, not just those with vested interests. Even Joe Public does not seem to get that this could happen to him. It’s apparent from the adverts for the forthcoming Panorama programme that the only way the BBC will engage with the subject is if extreme violence is involved.
If 64 million antidepressant prescriptions were written last year, some of those must have been for doctors, specialists, researchers. All very stressful professions, apparently. So where are they with their lived experiences of this class of medication? Why aren’t we hearing their stories and why aren’t they trying to find out the answers to the same questions we are asking? How have they been gagged or are they gagging themselves?
You mentioned in a previous post that we could come together as a group to crowdfund research, for example (apologies if I’ve remembered that incorrectly). Crowdfunding is not beyond us by any means, but the research bit is tricky. My understanding of scientific research is that first there is a theory to be proven or disproven. Do we have any working theories to test yet? Is there a testable theory as to why paroxetine causes emotional and physical numbing in some people and emotional and physical hyperarousal in others? If we could find somebody to do research, what would we be asking them to do?
More questions with no answers. We are awaiting that lightbulb moment.
I’d like to make one final comment, and that is about tapering kits. Whilst they may not be the answer for everybody, there is a wider issue here. Campaigning for their existence (and then finding they do exist) is a major political step forward in validating the opinions of so many of us who found that our requests for help with tapering either from our doctors, or in my case from GSK itself, were denied. James Moore’s vision is that everyone will have access to personalised tapering should they want it. His vision is in the process of becoming a reality.
Withdrawl and protracted withdrawl has been long known from benzos 30? 40? Years? And there has been no help for that so if history repeats itself we are all in for a very long wait for help from the medical profession.
If we fail, in our duty of care, for whatever reason, we must endeavour to take every step, no matter what, to remedy the problem, even if it means creating the necessary changes to the ‘straight jacket ‘guidelines that are too rigid to see beyond experience, common sense, reason or care. Any act of kindness, contributes to the benefit of humanity. ~ Carla Bataljin
PSSD has left me completely heartbroken for about 8-9 years now. It took about THREE YEARS for a doctor to even consider that I had a significant level of erectile dysfunction! They finally sent me to a urologist and he also just assumed I was insane and ran a bunch of tests with nothing abnormal showing up. Recently, I got the chance to see an endocrinologist and it was no surprise that my tests were completely normal once again. I’m yet another victim of this horrible condition and I have yet to meet a doctor that will even acknowledge it, let alone try to learn about it. I even printed some studies out to show my GP and he refused to look at them. Saying that PSSD is “impossible”. The PSSD community really needs the help of the medical community or we’re doomed.
I agree that i dont think things will change until the power imbalance between the medical establishment and the patients who take prescription drugs, i.e patients, is changed.
It is only when everyone involved can be honest and open about how prescription drugs often cause more harm than good etc, that real change will happen.
If and when the power imbalance is addressed, we can hope to have an honest and transparent way of evaluating the harms these medications cause, and an establishment that will listen and make changes according to those findings.
In some ways, getting rid of the power imbalance is the most important thing as a first step, and is a pre cursor that is needed to finding the solution or cure to PSSD. Once the power imbalance has been addressed, all sorts of options would be available, including different types of research.
Research done on prescription medicines, could also shine light onto other areas of medicine and the human body and brain, that we dont know much about. History has shown that often when researching the effects of a drug, unexpected results can come up, which often lead to other important and useful discoveries. So everyone wins, when research like this is done.
What i think might be useful, is something like a union, which has some legal power, and teeth, and can act like a bridge between the gap between the patient and the establishment. By having something like this, we would be able to force the establishment to take us more seriously, and to listen, which would hopefully lead to change.
Otherwise things will continue as they are, with the drug companies and medical establishment, ignoring our complaints about PSSD, and all the other damages these drugs have caused us.
An example of this is the thalidomide victims who are continuing to fight for justice, and compensation.
The drug companies have repeatedly stalled litigation from the victims, and are waiting for them to die, as most of the victims are old now. There was an article about it that i read in a magazine a few years back, about how the drug companies are waiting for them to die.
What we need is some kind of revolution that overturns and gets rid of the old way of dealing with the safety of medicines.
If you look to history though, often such change can take a long time to achieve.
An example would be the feudal system, which allowed the rich and powerful to stay where they were, and made the lives of the poor and relatively powerless a misery, and stopped them improving their position within society.
The first real attempt to get rid of the feudal system was the peasants revolt in the late 1300’s. This revolt ultimately failed (although in some ways it was a partial success), but although it failed, it acted as a stepping stone to more revolts that went on through the 1400’s, 1500’s, and 1600’s. It wasn’t until the late 1700’s, and the french revolution, that the real success came, and big changes happened, and the feudal system was gotten rid of. So it took about 400 years.
I think we are in a similar position with the drug companies, the medical establishment, and the denial of the harm a lot of prescription medicines cause.
It is like we are in the dark ages, and organisations like Rxisk are starting to shed a bit of light onto the dangers of these medicines, and the imbalance of power that keeps these dangers from the rest of us, and blocks change etc.
People are slowly starting to wake up a bit, and a few doctors are starting to see the light, but the majority remain in the dark.
It is my suspicion that just like the overturn of the unfair feudal system, it is likely to take a long time before real success is seen.
Although as technology and the media is so much more advanced than in the past, change might not have to take as long as 400 years.
If everyone who had PSSD, or even a couple of hundred people who had PSSD, marched on downing street, or the drug company headquarters, and it got media coverage, a lot of these changes would happen a lot more quickly.
It has been predicted by historians, that if the peasants revolt had suceeded, it would have greatly sped up the abolition of the feudal system and instead of it taking 400 years, it might of taken something like 200 years instead.
If we were to unite and make a concerted effort to address the power imbalance, things could happen more quickly.
History has also shown that we cannot rely on the establishment to change itself, or to eventually develop a consience. The drug companies are in a very comfortable position, making huge profits, and they are well protected by the establishment. They dont want to change.
Everytime big change has happened throughout history to get rid of a power imbalance, it has been when the common people have all grouped together and collectively said, enough is enough.
We have to unite together to make change happen. It shouldn’t be this way, and its not fair, but it is up to us to make the change.
It is just about finding the correct way of going about this.
Things like petitions, marches, making documentaries, other media coverage like newspapers, video games, social media, and news coverage, do seem to be making a small difference. Also mapping doctors and other people who are part of the establishment who sympathise with our plight, and listen (as suggested by Rxisk), could potentially make change happen from the inside.
But it takes time for the small changes to add up to make a big difference.
Any other thoughts on how we can speed things up?
Ideas for speeding things up,
1. Any of us who want to share our email addresses and communicate direct in some kind of action group – count me in and get mine from DH if he will be kind enough to pass it on.
2. A Protest to Downing St, yes, definitely, and the more visually interesting the better. What about some people ‘wearing’ cardboard boxes with the errant drug logos reproduced exactly as replicas, on them. The Press coverage would be worth it, even if our petition didn’t shake Jeremy Hunt up much. Jo Piblic would see the pill packets and if they are taking them, might get concerned, or if they are offered them, might be more wary of accepting without question.
3. Do our own research. Irving Sherwood has a ‘light bulb moment’ he’s shared on Katinka Blackford Newman’s Facebook site. It talks about oxygen and its inhibition in the brain by SSRIs causing body problems.
4. RoAccutane the acne drug causes permanent sexual dysfunction in many people. It is mostly Vitamin A, toxic to the body, but affects the genitals, changes DNA. It is not taken for ‘mental support’ reasons. Scans show the areas of damage. SSRIs seem to do the same thing. I want to know, like previous correspondents here, what is IN all this stuff. I put a reply to you Spruce about how to find out by speaking to a plethora of Uni professors on the previous but one string but it hasn’t appeared. If this is being Regulated out as being in appropriate, I apologise for it and maybe I could tell you more Spruce by email.
Yesterday I had a conversation with a mum who is fighting to save her son from giving up on life. He took RoAccutane and is left with the same sexual dysfunction as the post finasteride victims and you SSRI-damaged folk. We have lobbied to get this put as a warning on the PIL by the MHRA feeling that if people knew, they wouldn’t take it unless they were really sure the risk was worth it to them. We all want answers. We are all going to have to do the digging ourselves. The comments have been brilliant on this string. That mother says she thinks no research is actually going on. I think it must be, but we’ve got to find out where. We cannot just leave it and bemoan the fact that it is happening. The sense of utter frustration we feel is terribly bad for us and our own immune systems. ‘Be proactive not reactive’ was Olly’s little mantra. I think he was right. Onward and upward.
Heather. Prescribed Harm UK or PHUK is a Facebook campaign group. Please join us. We need more members. We are trying our best to get our voices heard. The medical profession is not listening. BMA has requested Health Select Committee inquiry. We would prefer a public inquiry as for Hillsborough. Petition has been submitted to Scottish Parliament. We need to act together but not enough of us.
Will have a look at this, very interesting. Thanks for the invitation.
Mary quoted on July 18, 2017 5:02pm:
”Carla – your comments re:-modern – day behaviour is indeed worrying”
Please give me the opportunity to explain myself.
You may have misinterpreted what I am trying to relay.
I am talking about aggressive behaviour in the work place.
In a nutshell, we don’t condone aggression or violence in a public setting.
If any professional behaves aggressively, the same standards of how to deal with unforeseen circumstances should apply.
No professional, is immune from behaving aggressively, if they are under the influence of recreational drugs, alcohol or some prescribed medications, which we all well know, could induce aggression and other unusual behaviour.
Aggressive behaviour is just not isolated to people who have been mistreated by the systems or due to an unfortunate upbringing.
Aggressive behaviour can occur anywhere.
No one can discriminate how or when it occurs.
It can happen anywhere and people have to be equipped with tools on how to deal with it.
Just because it does not make the headlines, it does not mean that it does not occur at home or in your workplace.
Hypothetically speaking, if anyone at work is involved in a situation where a worker has to deal with another workers aggression, I am certain there are risk management protocols out in place.
No worker, should have to live in fear when they go to work.
just like no one should have to live in fear when they are in the safety of their own home.
One never knows if the aggression can get out of hand and escalate into a nasty situation.
Organizations, have a moral obligation to deal with such matters when they arise.
If the matter is swept under the carpet, we are, like I quoted:
Condoning a culture that breeds negative behaviour is only going to become an acceptable breeding ground for more negative outcomes.
I recently saw a documentary about a paramedic who was ingesting recreational drugs, whilst working.
We have to be mindful that her situation can happen to anyone.
She goes on to explain how these drugs ruined her life and how it impacted her career.
Her case is real.
She admitted and took responsibility for her actions however, it is a very sad reality of how drugs can impact your whole life.
Please read the article as it will give you and others a better understanding of what I am trying to relay.
Drugs, just don’t impact the persons life who is ingesting them, it sadly impacts those who live and work with them.
Perhaps, issues like this are best resolved when all concerned sit down and have an honest discussion on how measures can be put in place to help all involved.
Yes, Mary it is very worrying when organizations who has supposed to be the gatekeepers of our society, sweep important issues like this under the carpet because the guidelines are too may loop holes.
People, from all walks of life need support, not condemnation.
People who speak up should not have to suffer reprisals for bringing up such concerns.
These are issues that impact all.
Seriously, all issues pertaining to aggression or violence, should be taken seriously.
There are no guarantees in life that it will never happen again.
Thank you Carla – you are right , I was thinking only of aggression etc. as it’s publicly displayed. I totally agree with you that such behaviours have no place ANYWHERE but I do feel that we have to do our best to find the reasons behind such anti-social acts rather than merely punishing the offender. Punishment alone will not alter matters – discussions have a much better chance of bringing change. In a world, that seems to put such weight on status and wealth, compassion seems to have drifted almost into oblivion in many areas. You are so right that an act of unkindness from the highest ranking is as unacceptable as is a similar act between feuding street gangs. Thanks for the explanation – basically, I guess, we were both at the extremes of the same problem!
I just read this and felt I’d add a couple thoughts.
Parts of this piece rub me the wrong way a bit and it may be that I’m not fully understanding the point. I sense a feeling of frustration from Dr. Healy re: some people in chronic persistent withdrawal. I, of course, run into comments from fellow sufferers that I don’t care for. But it’s helpful to remember that one of the features of being in this state is irritability, dire thinking, impotent rage, etc. Expectations that someone who at least acknowledges the problem can also provide help may be unfair but it seems perfectly understandable and natural.
I’d also like to contrast the difference between AIDS activists and withdrawal sufferers that make the comparison more problematic:
1) AIDS was verifiable, medically and widely accepted. There was no battle in simply getting validated that one has AIDS. A blood test was all it took.
2) Related to #1, the source of confrontation between those with AIDS and those with withdrawal is substantially different. People with AIDS were met with indifference and lack of support not because they weren’t believed, but because of rampant anti-homosexuality that permeated western culture at that time. Withdrawal sufferers fight a much more opaque battle. The very nature of the mental health world is based on subjective impressions validated disproportionately by expertise in that subjectivity.
3) It is very difficult mentally for someone in persistent withdrawal to feel energized to rally support. One of the primary features of withdrawal is a complete myopic focus on one’s daily challenges and just finding a way to get through the day. And on days when we do feel better, it is often difficult to want to expend the limited energy we have on confronting psychiatry and demonstrating in the streets. For myself, one of the main coping devices I have is to find other things to focus on. It puts one in a position of hoping someone else will validate this experience for us. Obviously, I accept that what I’m saying is self-defeating.
The last point I’d like to make is that I’m at a point where I know that my issues with medication may never go away. I can function right now – I can go to work, I can be a father, I can enjoy some things. I can’t seem to get off the medications I’m taking without all of that being swept away. What I want more than anything is some basis of understanding the underlying mechanisms so that we can find ways of making the experience more manageable and far less unpredictable. But I’m afraid the battle I’m facing is too exhausting itself to turn me into an energized activist. (Heck another feature of this experience is periods of overblown self-doubt where I sometimes feel like blaming the medication is a cop-out.)
Thanks for this Greg! Good to hear you are succeeding in “having a life” on some level in spite of this drug disaster. That’s a victory of a sort. I only wish the news were better.
You’re right in many ways about our challenges vs. those of AIDS activists in the 80’s and early 90’s. Even before the virus was identified, nobody doubted that AIDS existed. The indifference was based more on the fact that those who were dying were seen as culpable somehow. Once the HIV virus was found, the prospect that they would spread it to (odious phrase!) “innocent victims” guaranteed at least some focus. And, most important of all, AIDS was not an iatrogenic illness – i.e., not a product of the medical system itself. To believe that AIDS was real was not to indict the healthcare establishment.
Has anyone here seen the documentary film “How to Survive a Plague”? It gives an unforgettable picture of the struggles of AIDS activists of that time.
As I recall, a big source of delay was that Burroughs-Wellcome was so happy to have the only “anti-AIDS drug” on the market, even if it was fairly toxic and not very effective. (That was AZT, an old compound they hadn’t even invented.) B-W charged through the nose for AZT, and worked with leading doctors to make sure other options weren’t taken seriously. Another problem was that drug cos were intrigued by the prospect of a vaccine or a “cure” – but didn’t give a damn about treatments to fight the multiple serious infections AIDS patients suffered from. This of course was a priority for those struggling to stay alive until systemic treatments were found.
Ironically, the struggles of AIDS activists have been exploited by pharma ever since to argue that there is too much caution in approving new drugs, and too much concern for safety at the expense of getting New Miracle Drugs to sufferers. The FDA is now the fastest and most permissive “serial approver” of dubious drugs on the planet. Yet we never stop hearing cries for it to become even more industry-friendly. I have to wonder what some of those original ACT-UP and Treatment Action Group fighters think of the situation.
Greg, I think your 3rd. point is spot-on. Without having witnessed withdrawal at its very worst, I don’t think anyone can fully accept that the human mind and body could possibly survive such a condition and live to tell the tale – and that poses a problem. On hearing of ‘withdrawal problems’ ( or adverse reactions actually), people will refer to their personal knowledge or experience of ‘pain’, ‘fatigue’, ‘insomnia’ etc. but will be as far from the reality of your real suffering as they can possibly be. Just ‘existing’ day by day seems to take all the energy that you are able to muster as you say.
I was so glad to read your final paragraph where you describe your achievements. I wish you continued improvement and sincerely hope to see my son, one day, able to lead as fulfilling a life as you do.
I function pretty decently but that’s because I went back on the medication. I haven’t been the same since going off Paxil 2.5 years ago even though I re-instated with Zoloft and benzos (for the akathisia). I doubt I ever will. I want to get off entirely but even slight adjustments have pretty horrific consequences I’ve found.
I can’t tell you what a source of comfort you must be for your son to be as understanding as you sound. We are difficult people to care for and having someone who understands without judgment makes all the difference in the world.
Greg – everything you say rings so true for Shane too. He’s on Quetiapine and Depakote. Over the past two years, he’s reduced his Quetiapine intake by half, Depakote is yet to be tackled. The ‘slight adjustments’ that you mention have such incredible consequences don’t they. Shane was able to get liquid form for his reductions but found that just swapping from a 25mg pill to its equivalent 5ml liquid shook him up before he’d reduced a drop! It’s incredibly hard work on your parts – but I won’t pretend it’s easy for the rest of the family observing it all going on either!
I must give you special thanks for your second paragraph here – my halo hasn’t shone as much for a long time! You’d be surprised how hurtful comments can be from others towards those, like myself, who are doing what we can to support the mental health services in their work of caring for the individual. Outsiders cannot understand HOW we can dedicate so much time to supporting ( whole family supports – I’m just the mouthy one who goes on about it!!!), WHY we do it when we have a right to our own lives and some even suggest to remove ourselves from the situation and let go. All, needless to say, from people with no idea of your suffering. Your comment illustrates, to my mind, how far you have come in your recovery – that you can appreciate the help of others and voice it, is indeed a massive step in the right direction. Shane is still at the stage of feeling himself a burden – but I’m sure that before long he, too, will see the support as being freely given without any grudges about ‘loss of our own lives’ etc. I know, from the sensitive human being that he is – and you sound so too – that he does appreciate everything we do. He seems tell others of his appreciation, but does not say the words to us as yet. I’m not looking for his praise -I’m not doing it for any reason other than the fact that I want to see him well. If I could swap places with him, I would do so in a flash – I’ve had a good life, led in the way that I chose; he has lost 15 years of his young adulthood all because his GP had been given a false promise concerning Seroxat by others. Seems so unfair but at least he’s still here and if determination wins the day, then he’s on the right track – although we can’t as yet see the finishing line!
Heather, you do have a comment to Spruce which mentions Uni research etc., as you said, on the last but one post. It’s dated July 11th. Hope that helps.
As always Dr Healy you are compassionate and genuine. You are a confident physician who is not above saying ‘I’m afraid I don’t have all the answers’ and I for one appreciate that. You’ve gone as far as saying that you learn from your very patients and again you must be praised for taking this stance. It takes a very capable doctor to do so.
I am grateful you were able to see me via Skype when you did – some three years ago and received a report which gave validity to what I have been going through.
I continue to make progress by caring for myself as well as I can. I try to simply ‘allow’ everything now. Most days are hard and frequently very very hard. The fear. The insomnia, the irritation, the sadness, the blunted feelings, the dizziness, the existential dread. The regret at ever starting these poisons, the anger at GSK and others for lying and covering up real data, the frustration when I read about another murder by SSRI or the latest celebrity ‘revealing all about their battle with depression’ (usually in a tabloid) and suggestions that the remedy somehow lies in the form of a medicine. It’s hard but I am better at ‘allowing’ it all. I volunteer with Samaritans and view it as my way of giving something back. Being present with another human while they suffer is a humbling experience and it’s one that I truly didn’t think I would have the capacity for until recently. I mention this because it ties in with your point about being listened to. It’s such a fundamental need and sadly it can be so quickly forgotten.
Well Sinead, I guess that everything I said to Greg (above) is equally relevant to you.
You have both brightened my day with your descriptions of your achievements. I hope with my whole being that one day our family will be able to rejoice in our son’s similar achievements in overcoming his present dark moments.
I guess we’re almost like a fan club here ( very old fans in my case!) – each with our own tale of finding ‘our hero’! Your choice of words to describe David are so true. I marvel at his energy too – maybe endless hours of hard work is the way to keeping young and on top of your game!
I hope that we’ve never sent in comments to cause anyone to doubt our sincerity in the appreciation of all his hard work. Yes, at times,we question – but it’s by questioning that we get to the true understanding of all that David stands for.
Thank you Mary, for your reply.
Many workplaces have a moral/ethics help line they can turn to when dealing with such issues.
Workers are also educated and given tools on how to deal and manage with workplace aggression and violence.
Unfortunately, in private settings, workers don’t have these resources or educational protocols put in place.
So when a worker is confronted with this type of situation, they do not have the tools or support network to help them deal with such scenarios.
Organizations, who don’t understand how it impacts workers, are just lacking the leadership to do anything about these issues.
Sweeping matters like this under the carpet only results in frustration and enormous amount of anguish and stress, to the individual who brings it to the organizations attention.
I guess, some organizations are just so oblivious to issues I have mentioned and don’t either:
– want to believe that such a problem exists
– It is pointless to change guidelines or implement changes, so that all concerned know how to better manage these situations.
Some workers are privileged to have all these occupational health and safety measures in their workplace whilst others do not have the necessary tools or avenues to turn to, when a situation like this happens.
Compassion, is a necessary requirement, Mary because it impacts all.
So thank you for your understanding of the situation.
It is appreciated.
When a worker in a private setting puts in a complaint and the concerns are not taken seriously, it worries me immensely how workers are punished for doing so.
Carla, – I understand EXACTLY where you are coming from and agree with all that you say. It might surprise you to know that many schools run on similar lines as regards bullying. They will deny its existence and mock ( behind closed doors) the parents who bring such issues to the fore. ‘Bullies will be told off or the bullied told to be less sensitive. They will make a few ‘rules’ to add to their ‘bullying policy’ which pacify nor support anyone. The only way forward with issues of bullying is assisted confrontation of ‘bully’ and ‘bullied’, TIME to spend LISTENING to both parties and SUPPORT in the following weeks/months. Support to help the ‘bully’ to mend his/her (as often as not in my experience!) ways by improving self-image etc. and support for the ‘bullied’ to improve assertiveness. By working with BOTH sides, the likelihood of further problems is diminished.
This pattern exists for adults – as you say, not in all workplaces – but getting adults to sit together and work it all out is VERY much harder than working with children but the problems, at source, are the same. Pupils will work with you but adults will immediately accuse you of being biased towards the opposing side! Pupils will openly tell you what happens and how they feel – adults will merely throw the blame squarely on the other person – or deny that a problem exists. My experience is only with primary aged pupils – I can imagine that a secondary school scenario may well be more complicated. Teachers who feel bullied by their superiors are encouraged to keep notes of all ‘offences’ against them without a murmur to the offender. That is the way recommended by teachers’ unions……. which is the EXACT opposite of the guidelines for dealing with the same issues in childhood! Why are we, adults, so scared of open discussions and confrontations? As for ‘whistleblowing’ – well, it takes courage of your own convictions knowing the possible outcome but, to be honest, if the above were put into practise then the need to blow any whistle would disappear since the offending practise/ treatment etc. would have been dealt with before reaching fever-pitch. This is illustrated so well by last night’s meeting of Kensington Council. Since matters have festered there for years, whatever is now being attempted to support the fire survivors is seen as the work of the enemy – plenty was said but I reckon very little was listened to.
Heather; i read your idea about phoning the universities. Unfortunately i am not in the UK at the moment, but it could be an idea for when i return. I would be surprised if it was being studied at universities, as i think the drug companies will want as little research going on about this as possible, but i suppose there is no harm in asking.
This whole getting official recognition by the medical establishment about protracted withdrawal and PSSD, does indeed seem “glacial”.
For someone suffering with PSSD, the lack of answers and the slow progress, really makes it a struggle to not concede to despair at times.
I agree with Greggs point that it is understandable for Rxisk and Dr Healy to not have all the answers, and for them to be a bit frustrated at the expectations from people with PSSD and protracted withdrawal which at the moment they understandably cant meet.
But i equally feel it is understable for people with PSSD and protracted withdrawal to look towards Rxisk and Dr Healy for answers, and for them to feel disappointed and frustrated at the lack of answers. I feel this is a natural response to being in an almost helpless situation brought about by these drugs.
I suppose we as the sufferers need to accept that the answers may be many years away, while Rxisk needs to understand that now and then our frustration at this may boil over a bit.
…..and we probably should always bear in mind too that Dr. David Healy did not create these horrors and, furthermore, that his understandable frustration is possibly as much, if not more, to do with the fact that there is so much denial of the facts. Just as it’s almost impossible to work with a young ‘bully’ who will say nothing further than “I never, I never, they’re telling lies again” in a situation of intended mediation, so it is with these drugs. “They can’t cause that”, “it’s all in your mind”, ” you’re just listening to some fancy far-fetched ideas from one or two professionals who’ve got it wrong” or “don’t you think that, if they are the cause of suicides, someone wouldn’t have come out and said it by now?” and plenty more examples that we hear, is the talk of a bullying culture and SO difficult to overcome. It is because of all these denials that I do feel strongly that any progress (whether successful or not) needs to hold our attention – such as the brain images or tapering kits – as I would hate for us to be seen by others as being a group who dismiss anything new without giving it our attention first. I trust every word that David speaks – as he well knows! -BUT I want to tell the world about his work because I BELIEVE IT TOO, not merely because ‘Dr. Healy says so’
Just like all other disease are acknowledged in the medical field, why can’t PSSD be added to the list.
Many people did not have this dreaded symptom before the ingested these meds.
They are dealing/struggling/suffering and just coping with it the best way they can.
Many issues, like the ones we raise on rxisk, I generally find that some people don’t want to know.
If we can just say the right words at the right time, enough to get them to take a little interest in what we are saying, it would make a world of difference.
For some it is a taboo.
It is something they don’t want to know about because they have not been negatively impacted by them.
It is like they want to deny that such things can happen.
This I understand completely because I was once a non-believer, also.
Once it happened to me, I could then empathise with people who have experienced so much suffering from ingesting these meds.
Some people think we are conspiracy theorists trying to create fear or making up stories, just to get attention?
What I would do to have many people come before they decide to grab a script?
Some people swear by them and if it does them good I am happy for them.
However, you never who is going to be negatively impacted by them and this very much so, worries me.
I tell people that if they have not had an unpleasant experience, that they do not have the right to judge.
I am very grateful that David has set up this site.
We can speak up and be counted here even if the naysayers don’t want to know.
We are interacting with people who understand the dilemmas we are experiencing.
We are establishing ways to create changes, even if all of us brainstorm some ideas.
Some of us have lost our good health and have the ideas however, just don’t seem to have the energy or motivation to act on them. Indeed, very sad : (
I feel that many are suffering internally and I feel sad that they never get the opportunity to know about rxisk.
One thing I do know is that we have so many caring individuals who contribute here who have the intelligence to do so much more and beyond.
I like to believe that we are here for a reason and sometimes when all hope is gone, I am very certain that something good will come out of all our stories and hopefully Spruce, we will not have to wait 400 years.
There has to be a better way without the revolution!
I don’t want to come back to repeat this lesson, again!
I hope we get to see some light at the end of the tunnel, before our spirits depart from this universe.
If there are those who dislike us, for speaking up, it is because they see as a threat.
I don’t see myself or others on rxisk this way.
I see us as educators, in cyberspace, creating an awareness that sometimes can’t be found anywhere else.
Rxisk, I hope is a useful tool for all clinicians in the field of medicine. If it helps them to gain some better insight and clarity, I believe some will silently change to better understand their patients.
Rxisk, I hope is for patients who miraculously come here, and will be better informed before they make a decision to take these meds.
I wish it had been available to me, in my time of need.
I know that many clinicians will still have to work within the rigid system whilst others will close shop and practice medicine, without the red tape and bureaucratic control.
Some already do this and there is nothing wrong with practicing medicine, that does not harm.
I agree with you Mary.
Without love or compassion, humanity can not survive ~Dalai Lama
First of all, thanks Mary for saying my comment re researching in the Universities Departments hadn’t been banned by the Regulator – I must have missed it when checking.
Next, a bit of I think relevant and rather wonderful news. The lady to whom I recently referred, whose son is suffering from PSSD except that it is RoAccutane-isotretinoin that caused it, not SSRIs etc as he’s never taken any, has by her sheer b-minded determination and by garnering up support from many young people also affected, has got the European Medicine Regulatory body to insist and promise that now ‘low libido’ will be written in the PIL for RoAccutane. This may not sound much but actually it is a breakthrough and just shows what one lone lady, driven with love for her son and desperate to keep him alive, can achieve, with just people like me and all those other PSSD RoAccutane sufferers, who wrote letters, can do. This is just an early battle won. We will continue till we win the war. She is having further dealings with the manufacturers. She feels we need a RoAccutane action group, now that RAG forum sadly died away when David Chow, its instigator and RoAccutane sufferer finally died in 2015.
A good point is made on this string by Greg when he says that people damaged by any of these meds do not have the stamina physically to keep fighting. Of course, this is what Big Pharma is reliant upon. Same goes for parents like us, bereaved by our offsprings’ suicide. We don’t have the oomph to keep fighting, some days we are so sad we can hardly face living any more ourselves. But people like the lady who has got this excellent result from the European Agency, are well in themselves (except of course very stressed) but are driven on with constant energy, to save their loved ones, who are still, mercifully, alive.
People of Great Britain! Our Beast Descends Upon Your Children
The Beast rose decades ago when GlaxoSmithKline, despite realising the enormity of Paroxetine withdrawal and suicides, made a major error in launching Seroxat in the UK.
With all due respect for Breggin’s diligence, highlighting our UK Problem, we are quite aware of it and we are also quite aware that a large number of children have been prescribed Seroxat over the years resulting in severe disturbances to their lives and families despite this drug having a black box warning – not suitable for under 18s.
What are we expected to say to bereaved families when this UK Company has flagrantly allowed gps and psychiatrist to prescribe Seroxat – the campaign for Seroxat has been merciless, cruel, unlawful and corrupt – the UK Litigants are still awaiting a trial date for the UK Based Group Action and I would anticipate a huge rallying call, at this time, when all those affected by all anti-depressants step up and add their voices to a Litigation that should include all those harmed by any anti-depressant.
It would be nice if once in a while Breggin would draw attention to the work of people like Shelley Jofre and others in this field.
So thanks, a great article,, but, we know exactly how well placed we are to shoot the Seroxat where it hurts ..
Greg – your words about being riddled with self doubt about blaming the medicine really struck a chord with me. My son who died by prescripticide, kept blaming himself, not the meds, to the very end. I think it was something the meds did to his rational thinking processes. I tried to get him to see that he was not to blame. I think your ideas on focussing on something else are really right. He did that and it worked. It was only when a terribly bigoted and idiotic psychiatrist confirmed his feelings of self blame, that he ended his life. So please be aware, you are NOT to blame in any way whatever. Unless you can be blamed for trusting the professionals, which is so reasonable, and we all did it. Never again though…..
I am so happy to hear about the lady who never gave up and has received some acknowledgement from the European Medicine Regulatory body to insist and promise that now ‘low libido’ will be written in the PIL for RoAccutane.
I am hoping that other medicines highlight this vital information, also.
This is great news : )
It just goes to show Heather, what determination combined with the power of love can do!
Good on her! I am very happy for this important outcome.
You all deserve some positive news.
Many, many more blessings to you all, Carla
Thanks so much Carla! We were delighted with this, because it at last acknowledges for all to see that RoAccutane DOES INDEED lower libido. It gives a little warning. Not dramatically effective, but a small step in the right direction. Many young people, having taken RoAccutane for their acne suddenly (and irrevocably) lose their sex lives, and their relationships, which leads to isolation, fear, confusion as to why, and humiliation which can lead to suicide. At least now they can see that loss of sexual feeling is down to the drug and not something inexplicable that has arrived from nowhere and must mean they themselves are crazy. It might even get doctors to believe them when they report it…..
I think the way out is to focus on what we can do and control. I know I spend a tremendous amount of time not doing this and instead focusing on what happened to me and how what happened to me isn’t recognized. I think it’s relational trauma not to be believed in the context of loosing one’s health and literally being filled w terror. I think I will be more helpful in finding a way to further the cause when I spend more of my time with a frame of mind focused on what I can do.
Regarding barriers to recognition of protracted withdrawal, etc, I think once we are traumatized by both the damage done from the withdrawal and then by how we are treated by health care providers and generally most people, our beliefs about people change–which makes it harder to ever feel recognized–because now it’s also about feeling totally disconnected from people and the world. It’s generalized out.
Also in regards to barriers to recognition of protracted withdrawal, etc, I think there is a real fear (and one that is based in reality) amongst doctors and mental health providers that think similarly to us that they will face disaplinary action, lose their job, or be ostrosized if they state their opinions regarding drug withdrawal. It’s seen as scandalize and taboo not to go along with the parting line. I also think that for non-prescribers who are mental health professional like psychologists and social workers, they may fear being told they are practicing out of their scope of practice if they validate concerns about psychiatric drugs. It takes a tremendous amount of courage and resourcefulness to risk loosing one’s career even if they want to help.
I have appreciated the honesty even if it’s very bad news. In some ways it is a relief because no one else is saying it like it is. By the time I found David Healy there was a part of me that of course wanted something to fix or help the situation (and I did keep searching) but a big part of me knew that things were really bad and I’m left with what I’m left with. It’s way more supportive to be told “we don’t know” than not be be believed or for someone to suggest interventions that would do more harm (like throwing more psych meds at the problem).
I think that now would be a brilliant time (for those of us in the UK especially) to get behind Bob Fiddaman on his mission for the truth about SSRIs ( Seroxat in particular). We need to read his latest blog about the Sky News article yesterday concerning the sale of these and other drugs on Facebook. A spokesperson from the MHRA actually said that these drugs are addictive and that people are dying by their own hands simply because they cannot wean themselves off them. This is the FIRST time EVER for such a statement to come out of the MHRA. Bob emailed the MHRA immediately – and will inform us when he receives a reply. Couldn’t this be a toe in the door of opportunity – especially if we all now write/email the MHRA with our knowledge of this leaked truth? The fact that Panorama next week will also be on the SSRI trail should surely add to the momentum? I feel that we need to support such an opportunity – they don’t come along every day do they!
Please understand, I am in no way promoting this as an idea for treatment, but I am intrigued to know whether anyone with PSSD has ever tried working with a good hypnotist? Dr Healy says the problem is probably in the body, not so much the mind. But doesn’t the mind control how the body works? If the cells in the areas that lose feeling are truly ‘shut down’ and the genital area cannot physically function because it has lost the use of nerves there, then hypnosis could not work. But has anyone put this to the test? It would need to be tested using a really good and well accredited hypnotist of course. Please excuse me if this seems like an insensitively stupid idea, I am just trying to think all ways round the problem.
I think it might be true that PSSD is caused by changes to the body and not the brain.
The part of my body that seems to be most affected by PSSD is my upper testicles. They seem the most numb. Whenever i get the small improvements i seem to notice them in my upper testicles the most. Often when having the small improvements and when i orgasm, i will have feelings of pleasure/ or the orgasm seems to try to go across my testicles in a flushing type of pattern/ but it feels like the orgasm is inhibited in some way. Like whatever has caused the damage stopping me having a full orgasm/ is in my testicles.
I think the theory that PSSD is caused by some alteration or damage to the nerves in the genital area, from my point of view, is quite plausable.
I have heard of people reporting improvement in PSSD with acupuncture Heather. But i dont know if it was temporary or lasting improvement. I haven’t heard much about hypnotherapy for PSSD, but it would be worth giving it a go.
The only thing that improved my libido to anything near like it was pre PSSD, was when i smoked cannabis once. I stay away from all drugs now, both recreational and legal, but i had about half a joint of cannabis years ago, a couple of years after developing PSSD, and it made my libido return to at around 50% of what it was prior to developing PSSD.
I dont like the effects of cannabis, as it makes me feel anxious and paranoid, and i am trying to live as healthy as possible, avoiding any type of drug, to give my body the best chance to heal. So taking cannibis is not an option for me.
The improvements from the cannabis eventually left as the drug wore off, but the improvements were quite noticeable. Maybe the improvements might have been caused by the cannabis elevating dopamine in some way, as quite a lot of the effects of cannabis, are caused by elevating dopamine i think.
I know that one person who suffered PSSD-type damage from RoAccutane was experimenting with cannabis oil and found it made a difference to his symptoms Maybe there is a way of harnessing the benefits from cannabis without getting the unwanted ones. We hear that cannabis helps with MS and Parkinson’s, I guess all this is anecdotal but this is just the kind of research that must be going on somewhere and it would be very helpful if we could find out about. One doctor I heard of was experimenting with it, using the cannabis oil, I will try to find out an update on what he has discovered. What you report Spruce, does indicate that there could be a way to spark things up again (please excuse my wording! 🙂 ).
Of all the powerful and most discomforting posts and comment sequences on this and other websites, I have found this to be amongst the most moving and distressing to read and re-read.
It left me soul-searching for my own response for many hours.
The outcome has been to post the following comment on “Pulse” – a widely browsed G.P. Magazine. (22/07/2017).
A feature: – “GPs Set To Be Banned From Prescribing Homeopathy” led to some G.P. concerns re antidepressants which I could not ignore. It reads as follows: –
“In addition to iatrogenic:- Emotional Blunting, Adverse Behavioural and Personality Changes, – life threatening and fatal neuro-toxicites:-
Intense Agitation, Akathisia, Toxic Psychosis, Suicidality and Completed Suicide
AT ALL AGES, Disinhibited Aggression, Violence (Including Homicide).
– Long term dependence, unbearable withdrawal syndromes.
(Suffering and despair aggravated by prescriber denial)?
– – Sexual Dysfunction in men and women, sometimes of profound severity.
Post SSRI Sexual Dysfunction which may last for months, years, and in some cases apparently indefinitely. (Vulnerable to prescriber denial)?
In addition to the evidence of fraudulent and ghost written clinical trials, the pharmaceutical marketing on the back of the now denied and discredited myth of the “chemical imbalance” is hardly an endorsement for the “gold standard” of
“Evidence Based Medicine” .
By all means recognise and remove drugs which have no therapeutic efficacy unless a safe placebo basis for prescription is fully explained to the patient.
In recognising and eliminating “Marketing Based Medicine” surely Primum Non Nocere demands that we address the most dangerous first?
Steve McCrea July 22, 2017 at 11:49 am
What a novel recommendation! Sheesh…
NICE agrees with BACP that counselling works as a treatment for depression in adults
Risperdal Boys ..
Silenced in Boston July 22, 2017 at 6:31 am
Forced Gynecomastia stole my adolescence from me. Forced rectal penetration all by women. The humiliation and the torment was endless. I have never been ok since. I don’t eat regularly and sometimes have to do things that most reading this would want to end their life if they had no other options to get basic needs met.
As I have been told countless times; it’s my fault.
Doesn’t this post relate to the problem raised in previous ones (Kenny’s Dilemma and Sally & Kenny’s Dilemma)?
David asks what on earth to tell people in despair when he has nothing to offer for persistent/ongoing/enduring/complex post-psychotropic drug withdrawal. I wish to hell I knew. I think the one unique thing here on Rxisk we could do, is to be absolutely honest. We have no idea how many people are permanently affected because there are no figures, because no one is doing the research. We’re all fumbling round in the dark. There are so many variables: some people recover, some find tapering helpful, others seems to get through cold-turkey withdrawal OK. Some, like me, have ongoing, chronic problems.
I’m not sure why these days everyone is so terrified of ‘negative’ messages. (Personally I blame CBT’s relentless pursuit of positivity). Life is shit sometimes and admitting that, can be very liberating. It can also be very liberating, in a weird way, to be told, upfront, that there is no easy cure. Or that there might be no cure at all. That needs courage – but I think people are more robust than we sometimes think. Maybe it’s OK to make people sad and angry – then start the business of adapting to life with multiple chronic physical problems? Or, make those of us who still take meds feel OK about it. Better than suggesting that everyone can and will ‘get through’ – when not everyone will.
Mary’s cancer analogy is interesting. We get A1 treatment with oodles of kindness and people are conspicuously better at talking about it. Where it starts to go a bit wrong – and gets closer to David’s question about honesty – is around the likely outcome of poisonously dire treatment. In my experience, medics are modestly inclined to honesty: ‘chemo is tough and might give you another 6 months at best – it’s your choice’. That choice is seriously skewed by unrealistic expectations around survival, fostered by the media, appalling campaigns by charities (Cancer UK is one of the worst) and, of course, lurking behind every single major disease charity is – Big Pharma. As usual, making an informed choice about treatment is hard, because you don’t know who to believe and don’t understand the figures (a 30% survival improvement sounds great, except that mostly it’s a matter of weeks). We are so bad at talking about death. We’re bad about talking about the inevitability of pain in one’s life too.
I get frustrated sometimes because of the mass of data on Rxisk which no one has the time or resources to put into a useable form. (Not the side effects, but all the information contributors have given). We need the information. That’s evidence. So are observational studies around a detailed description of the problem. David posits a collaboration between patients and medics. Well, there’s plenty of the former here – but where are the medics/biochemists/pharmacologists who could do the science? I’ve sometimes thought I could write myself up as an example of what medication has done to my body (well, I have but not in a form that any journal is going to take seriously). I’m half joking but that’s something that David/Rxisk could offer – the chance to contribute to understanding what goes so badly wrong. That would be a fantastic legacy for the future. But it does need to actually happen, which means skilled people, who need paying….and there I run out of answers.
I’ve been thinking about a ‘Life after Meds’ guide for ages. But – what works for one person, might not for someone else (Jogging? – no thanks) so all I ended up with was a very short list:
1. Get moving somehow, every day – anything from mowing the lawn to walking down the road and back. It helps. Fresh air helps.
2. Make sure you have something in your life other than your health: anything from reading a book to learning to play the banjo. A dog, cat or goldfish. Just something.
3. Lay off social media sometimes. Its fractured, hectic tone probably isn’t much good for anyone for too long, and might inhibit your body’s capacity to calm itself.
4. Eat what you like, but eat. Food is energy.
Which, to be honest, isn’t much.
How to deliver the message? Straightforwardly. Along with all the information and support available already on this site.
Something that David said to me when we first started corresponding was to be active and don’t let this define me. I’ve taken w major detour with this advice as I have been running from the grief of what I have lost from psych meds (resulting in a ton of nerve damage). But I think it is a good guiding principle. Do I want to be the person where my life becomes and stays narrower or narrower or do I want to work on re-defining myself? It’s not what I hoped for with my life. But do I want to throw away all the good that is still left because I can’t face the pain and grief? No. It’s not a linear process but I do better when I focus on goals for myself. I can’t control how others don’t recognize what happened to me. I can scream it at the top of my lungs; it doesn’t work. But I can control if I am working on making progress where I can in my life. This doesn’t mean that.I have given up on the cause. Not by any means. But I need to find a way that is effective without it consuming me.
I suffer from lifelong depression. I can attest that this condition has severely limited my quality of life.
About 20 years ago I consulted a psychopharmocologist for the first time. He prescribed Celexa, an SSRI. He warned me up front it would affect my sexual functioning and he was right. But, the medication brought immediate and effective relief from my mood.
About two weeks into treatment, when he suggested I switch to what is now called Wellbutrin, a non-SSRI antidepressant, I was very reluctant because the Celexa was so effective. But, on his assurance I made the switch. To my relief and satisfaction, my sexual functioning returned as though it had never been gone, while my mood remained stable. He warned me not to ever go off the Wellbutrin because if I ever did, I “could bathe in the stuff and it wouldn’t work.” (This turned out not to be true – at least not in my case.)
A few years later, while on a trip, I misplaced my medication. When my depression did not return, I decided I could go off the drug. A few years after that I retired and moved to Florida. I believe the combined stresses of retirement and relocation caused my depression to return. After trying and failing to treat me with Wellbutrin, my new psychopharamacologist prescribed Effexor. Once I reached an effective dose, my mood immediately lifted but, my PSSD also returned. My new doctor did not suggest a switch to Wellbutrin.
A few, years later I went off my medication and my mood remained stable. But to both myself and my doctor’s surprise, my sexual functioning did not return. I went back to Effexor when I again experienced a period of stress and my depression returned big time. My mood again stabilized, but demanded that he switch me to Wellbutrin. I remain in good spirits, but my sexual functioning, while not completely gone, is far from satisfactory.
I have no doubt this is a physical problem and it’s caused by these medications. Apparently, the resulting PSSD can become permanent. Because they are a lot more profitable, the pharmaceutical industry is obviously much more interested in maintenance medications that require lifetime commitments than one off cures. Since most SSRI patients have no expectation of going off their meds, they have accepted this bargain. Most of them as do their doctors have no idea that their PSSD may be permanent. You won’t hear about any of this from the drug reps. The drug makers certainly have no interest in addressing, let alone acknowledging, this problem. Why mess with a good thing? Plus admitting it would expose them to legal liability. As usual, it all seems to come down to money.
While I was struggling with my depression immediately after my relocation and retirement, I contacted my doctor from up north for a referral. He told me that he knew of only a few doctors in Florida who followed his protocol, but none of them were very close to where I live. It never occurred to me that, by “protocol”, he was referring to his regimen of using the SSRI only as an intervention to be followed up by switching to the non-SSRI antidepressant for maintenance. I also had no idea that prolonged use of SSRIs can result in permanent blunting of sexual function. I don’t even know if even he knew this condition could be permanent. I only wish he had been more explicit about his strategy. It could have saved me a lot of grief.
I am now trying to follow the “use it or lose it” strategy. Just like a teenage boy, I attempt to gratify myself as frequently as possible in the hopes my brain will rewire itself. It’s hard to know if this is working. Some days I’m more optimistic than others. I’m much too busy in retirement to record my experiences to see if there is a pattern of continued improvement, however incremental. Maybe I’m grasping at straws here, but I have read that over time the brain can build detours to bypass damaged neural pathways and enable people to recover lost functions. But it requires active participation.
With the almost universal dispensing of this class of drug, it makes one wonder if there is a measurable effect on global reproduction patterns.
In the past, I’ve contacted institutions that, because of their specialization in sexual research, I thought would be especially interested in this problem. Notable among them was the Kinsey Institute at Indiana University. As I expected, I never received a reply. At first I ascribed this to the tendency of researchers to discount input from laymen. But, I also suspect that, here again, money is a problem. What drug maker is going to fund research into the damage caused by a heavily prescribed (and profitable) class of drugs?
I recently had a conversation with an Irish citizen. He told me of a friend who had contracted Lyme Disease. This person is having a terrible problem because the medical establishment including the national Department of Health does not recognize Lyme Disease. Therefore he cannot get treatment for it. This is the same problem facing victims of PSSD.
And, finally, there is another element I believe is hindering a better understanding of the scope of this problem. A person’s sexual behavior is highly private. I suspect that many men, perhaps women a little lessor extant, are far from honest and forthcoming about this problem. If so many of the victims really are reluctant to come forward, it’ll make it that much more difficult to make progress.
David surely this is the time for you to organise a conference on the topic of PSSD. if you can remember the first conference I organised was to highlight denial of academic freedom, following your Toronto experience.
Catherine Jackson award winning mental health journalist told me the Panorama programmes on Seroxat were a direct result of the networking made possible at our conference. There are too few of these medical events not funded by industry. I am sorry I no longer have the energy to instigate large meetings but am sure you would find a team of willing volunteers to help you, as I did for 3 conferences.
Please also remind people to watch the Panorama programme due on July 27th influenced by Katinka Newman’s excellent book ‘ The pill that steals lives’
I think it’s being shown on Wednesday 26 th at 9 pm Millie.
Your idea about a conference is brilliant. I do hope there is a way to make it happen. Then so many of us could get together at last. Wonderful for solidarity and further efforts all together to make a difference.
Ended up going onto a mental health website today, after it came up when i was looking for something else. The website was discussing depression.
I couldn’t believe the amount of people urging other people to take SSRI’s, saying they aren’t addictive like benzos, that they are safe, and that they are easy to come off.
Also lots of people saying that SSRI’s make you normal by re balancing the serotonin in your brain, to the way it should be.
I am starting to realise just how good of a job that the drug companies have done getting the general public and the doctors to believe their lies.
Many people who comment are simply repeating the same thing in different words. What they may need to do is process their own shock, horror, anger and grief that they ever agreed to take these drugs in the first instance and what they have endured and learnt since and will continue to endure from the drug and from the ignorance of the medical industry and the world we presently live in. In my experience, if you don’t absolutely need to take a drug then don’t ever take one. I was less wise once.
You are right Mark but most people take the stuff because they trust their doctors and put themselves willingly into their hands. Most people don’t want to question them because they see them as clever worthy beings who would not ever willingly do harm. And nor would they, but they’ve been brainwashed by Big Pharma. And how much easier is it to write out a script for, say, something like gout, giving a toxic plant based drug, which can cause sudden death, rather than look at what might suddenly have caused it, a particular medication causing too much uric acid to be made in and excreted by the kidneys, in turn made worse by eating too much fish and meat. Easy, cut out the fish and meat, fill up on carbs, rest and ice pack it, and complete the antibiotic that triggered it. Then onto extra healthy diet rich in Vitamin C to knock it on the head (or in this case, the toe joint). But you have to Google and find all this out for yourself.
So with SSRIs, when a patient goes to the doctor feeling low or agitated, they are not best placed to do any sleuthing about what what they are handed a prescription for. They naturally just want succour and relief. They TRUST. Naturally. But we can’t do that any more, sadly. Doctors are fighting shortages of time, too many patients, exhaustion, and mostly want a quiet life……remember that folks, and just like Mark K says, look out for yourself, even if you are on your knees.
So how would we go about getting a research project into the causation of withdrawl syndrome and what would the costs be? As someone said in an earlier comment maybe crowdfunding would be possible especially if it would interest benzo victims too . Is it not about time to put this in motion before another 30 years pass and we are talking about another variety of drugs doing the same harm.
What we really need to get PSSD out there, is for panorama to do a programme on it, like they did the 4 programmes on the dangers of seroxat (paroxetine), such as “seroxat secrets”, and “emails from the edge”.
If they are doing an upcoming programme based on katinka newmans book “the pills that steal sex”, why cant the do one on PSSD?
In some ways i reckon doing a panorama programme on PSSD would be better than another type of documentary on PSSD, as a lot of people have heard of panorama, and it would be watched by a large portion of the country.
I think we should really work together to try to get panorama to agree on doing a programme on PSSD. Even if it takes years for them to agree to it. It is well past time PSSD was given some proper lime light.
What does everyone think?
Brilliant idea Spruce. I think it should include sexual dysfunction caused by RoAccutane-isotretinoin too.
Let’s all write to Panorama, pat them on the back for tonight’s documentary and say there are thousands of us, many too embarrassed to ask for help, about PSSD and BBC could do a great public service by shining a light on this massive ‘hidden’ problem.
Sit down and write the letter AT ONCE. Don’t leave it another minute. Doesn’t have to be long. But do it now. Google address. First class stamp, recorded delivery. Well worth the expense.
I experienced PSSD for close to 7 years. Genital numbness, no libido, no erections for about 2 years. Another slow 4 years with sexual anhedonia, where I had regained my libido and erection abilities but still had very little sensation and dry orgasms.
During those years I didn’t really notice any positive changes, I thought I would never be the same. But changes happened and now I can say that I have recovered.
I was only 16 when I came off the SSRI’s. So I was still going through puberty, which may have some effect on my recovery. I wanted to let people know that there is hope for recovery. I have none of the PSSD side effects anymore.
Spruce asked me to post my story. I hope that someone reads it and feels less “terminal” because PSSD is not a terminal diagnosis.
Thanks for telling us this CharlieBrown. This is really helpful. Whilst I agree with Sally’s point that we need to face up to difficult life changing effects from these medications and accept them, we also need to be aware that nothing is impossible either, simply because, as DH has said, we just don’t know for certain.
My over riding concern is suicide. People with no hope, who can see no way forward, sometimes sink. Sally’s list of coping strategies are good. Spruce and CharlieBtown’s evidence is vital too. Some marvellous posts on this enlightening string, Tim’s information excellent too.
Thanks Charlie Brown. I also asked a few other people who used to have PSSD, and have since recovered, to comment.
Only one replied back, saying he would rather not, as he wanted to put all that behind him, now that he has recovered.
I a lot of people that recover from PSSD often want to just move on with their lives.
I think there is also an issue that having had sexual problems, is not something a lot of people want to talk about, or be reminded of, as there is still a stigma to this. Like they dont want to be known as “the guy who had sexual problems for years” etc.
I think this stigma may be part of the reason PSSD might not have gotten as much publicity, and awareness about PSSD remains so low.
You are bang on right Spruce. No one wants to talk about this. It’s a bit like when people get over cancer and don’t want to tell anyone they ever had it. But PSSD is worse. No youngster wants to talk about sex to their parents or partner. Never mind sex not working! This of course makes it SO easy for Big Pharma to keep PSSD under wraps. We’ve Ben trying to get the RoAccutane-isotretinoin ones to come forward and do a RxISK report. The dead ones of course would if they could but can’t, so what parents report can only be second hand thus presumably no good. All pretty bleak really but we keep trying.
Thanks very much for this thought-provoking post. I think there are two gifts a doctor could provide someone battling severe withdrawal: first, accountability and acknowledgment of the problem and, second, empathy. My mother was in her early 60s four years ago when she tried to discontinue escitalopram after five years on the drug. After a six month period of adjustments and a trial of several other agents (including an anti-psychotic!) she was put on diazepam to try to reduce her anxiety (on the background of longstanding low-dose oxazepam for sleep). With ongoing symptoms of SSRI withdrawal, compounded by worsening BZD dependence she tried to gradually reduce all these drugs. Among the difficulties she faced was severe anxiety and peripheral neuropathy with burning pain in a lower limb and saddle distribution. Despite seeing multiple medical practitioners, her complaints were dismissed as severe depression. She was told off by her GP for letting herself get in such a state, and a very senior psychiatrist in Australia baulked at the suggestion that people have difficulty withdrawing from benzodiazepines. As her pain worsened following a supervised inpatient withdrawal, her addiction specialist told her “pain never killed anyone.” Sadly four days after discharge from hospital and the day after the specialist made this throwaway comment, she commited suicide. In the coroner’s report she was described as severely depressed and non-compliant. What might have helped? Some simple acknowledgment that she wasn’t crazy that perhaps her symptoms were real.
This is the kind of treatment that your mother experienced Felicity, that makes me very angry. I was treated in much the same way as your mother was by various doctors.
I also suffered severe withdrawal symptoms from benzodiazepines, and even ended up having a seizure and auditory hallucinations when one doctor tried taking me off too quickly from a high dose.
There has been no accountability or apology for the suffering i endured, and continue to endure from the PSSD.
I almost feel more angry at the levels of arrogance displayed by doctors, than the actual damaged caused to me by the medicines.
The hippocratic oath doctors take to “first do no harm” is a complete joke as far as i am concerned.
Thanks for your comments Spruce. Yes, my mother felt quite overwhelmed by the arrogance and lack of empathy too. She simply didn’t know where to turn!
I must admit (perhaps adding to my shame) that I am a doctor too. I’m an oncologist and so have a fairly rudimentary understanding of anti-depressants. I was at a complete loss as I watched my poor mother unravel. Unfortunately I wasn’t living nearby and I thought by encouraging her to seek assistance from “the experts” that she would be helped but sadly she didn’t meet the right people ultimately. Many doctors are great at starting new medications but not very good at helping people to stop them again. In oncology most of our time is spent deciphering and managing the side effects of the drugs we prescribe but this paradigm isn’t followed in many areas of medicine sadly.
I don’t mean for one minute to question your credentials as a good and listening doctor but one of the surprising things is to look at the labels of oncology drugs. These are widely regarded as the most toxic drugs in medicine but yet if you check the adverse events section they tend to be much skimpier for other drugs. It suggests that somehow oncologists may be taking an option to view odd reactions on treatment as stemming from the illness or the psychological reactions of people on chemotherapy rather than stemming directly from the meds.
Some of the really nicest doctors I know are dermatologists. They are excellent in their own domain. But they apparently have never seen the suicidality and other problems on Accutane and doxycycline and now Siliq, Otezla and Taltz that are happening right in front of them.
Even when one has lost a son to suicide on Accutane (isotretinoin) for acne, and reports it to a ‘nice’ dermatologist in passing, when referred to them for a different skin problem, they become edgy, irritated, their eyes glaze over, and the standard response seems to be,
“Yes, all very sad, but RoAccutane is the main tool we have which effectively treats acne, and acne itself is very upsetting mentally.”
End of discussion. A twitching of the tail, and the door is opened to facilitate your speedy exit. Our proffered Warning Leaflet ‘BEFORE YOU TAKE THAT PILL, DYING FOR CLEAR SKIN’ is politely waved away. There is no meaningful discussion. And this is of course also an oncology drug.
Oncology (chemotherapy) drugs also changed our other son. His mental attitude to us became hostile, rejecting and unfeeling. We can’t prove it was the drug of course, he could have been angry about having cancer and feeling that we were not supportive enough for him, whilst at the same time trying to prevent the other son dying. We failed on both counts and are effectively childless now, mostly thanks to Big Pharma. So, oncology drugs are more toxic than people realise.
This is an interesting and fair observation. I can only speak for myself but I’m inclined to believe the patient when they present with unusual reactions and usually the time course assists here. Often the biggest problem is working out the culprit with combination chemotherapy and a range of “support medications” (the various anti-emetics, steroids etc).
I’m surprised about the dermatologists as I thought Accutane was fairly well known to cause suicidal ideation. That said, I wasn’t aware of this with doxycycline.
Thanks for all your fascinating insights.
Why did they have to make my genitals go numb instead of my elbow, index finger or my little toe?
PSSD cannot be purely peripheral, as my anxiety has been “cured” as the result of taking the medications. Anxiety originates from the brain and causes other central nervous system issues such as irritable bowel syndrome or elevated heart rate. This is going to sound crazy, but I can feel the part of my brain that feels fried. In situations where I would normally feel panic, I now feel an increased sense of “being medicated” and become even more numb peripherally (fingers and feet). If there is a switch that regulates serotonin in the brain, mine is clearly turned on at all times and the off switch is broken. The negative feedback mechanism around 5H1A receptors makes a lot of sense given my symptoms. I was born with extreme anxiety, as it runs in my family. The fact that it is now 100% gone simply cannot be ignored. A devastating imbalance exists in my brain. It 100% starts there.
On the subject of PSSD, I just watched a programme (Sunday 10am 13th August BBC 1) discussing whether NHS could afford any longer to pay for IVF for infertility. At no point was it mentioned that anti-depressants actually could be causing a lot of male infertility by PSSD and probably the same for women. They did allude the the bad effect of being unable to have a child has on the mental health of those affected by infertility.
Maybe if we could get society to realise this, anti-depressants would be prescribed with more caution. It would be great if every GP asked the question “Have you ever taken isotretinoin or anti-depressants in the past,” when seeing each new patient unable to conceive. And if this information could be collated and the figures reported to the Minstry of Health.
So it seems SSRI’s can also make you infertile. I hope they haven’t made me infertile on top of the PSSD. I think if i found out i was infertile on top of the PSSD, i would be calling it a day.
To be honest, there are so many things wrong with SSRI’s that its almost a miracle that they are legal.
If you asked me which would be safer for you;
1 smoke crack cocaine or..
2 take an SSRI
I would say from what i know about SSRI’s, that it would be safer to smoke crack.
I am not joking in the slightest.
Sorry here was the correct link about SSRI’s causing infertility.
So the sperm levels return to normal after discontinuation of the drug?
No iatrogenic effects…
I hear that from doctors for years about PSSD…
Know your friends well… Know your enemies even better…
Specially those with conflicts of interest…
Spruce, when one considers why most people get offered SSRIs in the first place, I’d guess it’s because there is some stress in their life that they have been coping with and suddenly it all seems overwhelming, so you want something to lift the anxiety whilst you get back to being able to cope again. I don’t know about cocaine but a nice medium glassful of red wine (if affordable a really lovely Merlot perhaps) will do wonders. Sip it slowly, savour it, and feel it’s calming effects. (Good for the heart too, we are told). I’m not suggesting drinking bottle after bottle. But I do remember my mum hiding a bottle of sherry in the larder behind the Cornflake packets (we still had larders in the 1970s) and pouring a little schooner full, to give her the strength to cope with my dad when he was either ‘up’ or ‘down’ in stages of his manic depression. It worked for her. The Merlot or Rose works for me, dealing with stresses of life just now. But it must be kept to one or at worst, two glasses. No more. At least by using this relaxant, I know that my mind has not been chemically altered in ways I do not understand, and I can care for my liver by eating well and drinking water to compensate for the alcohol. But, like you, I think the SSRIs should be illegal.
Risk for me now is just a psy op to maintain the status quo about antidepressants.Of course antidepressants cause PSSD. Its poison damage. But money has to be made from piece of shit drugs.
Studies will be made about PSSD, and the conclusion of the studies will be that more studies are needed…
This year marks 30 years that Prozac entered the market. In 2011 ( 24 years after) Prozac prescribing info started to mention PSSD.
Iatrogenic sexual dysfunction is known from antipsychotics for decades. The same can be said from antidepressants. But these drugs generate a massive financial circuit of hundreds of billions of dollars. The worst of human nature at play… Mob style…
I wasn’t suggesting something like crack was good for you, not at all; but if someone put a gun to my head and said you have to smoke some crack, or swallow an SSRI, i would genuinally choose the crack, after what i have experienced from SSRI’s. I was just using the crack as a comparison, i dont recommend anyone take something like crack.
I think the best drug to take, is no drug at all. Our bodies were not designed to take drugs, especially not long term.
Sometimes in an emergency, short term situation, drugs can be brilliant. Like aspirin and clopidogrel when someone is having a heart attack, or IV lorazepam when someone is having a bad seizure, or salbutamol when someone is having an acute asthma attack.
These are the type of situations where the benefits of taking a drug, outweigh the risks.
But taken long term, i think drugs usually end up causing a lot more damage than they do good. Their “magic” wears off, as your body adjusts to their effects, and you dont benefit from them like when you first took them, and they often turn like a double edged sword, and start causing problems.
Maybe in a minority, and in certain situations, the risk of taking a drug long term might outweigh the risk of not taking a drug long term, but in my opinion, any drug taken long term will usually end up causing more problems than it is worth.
The human body can cope well with being poisoned in the short term – as with an antibiotic for a week but even there not everyone gets off scot-free. Poisoning with combinations of drugs chronically is pretty well guaranteed to cause problems
This is normal practice in ‘mental health’. It was more how I ‘died’ with PSSD. I was 19 when Lyrica was added, instead of common practice from doctors it should be criminal practice. He sold it to me as some sort of ‘wonder drug’ at the local mental health place on top of already ‘antipsychotics’ and ‘antidepressants’ I had been on for decades already. I didn’t see him for very long before the next psychiatrist. The NHS shouldn’t be doing this to people. It’s worse than a hit and run.
If I had cut someones genitals off or plied a teenager with a combination of drugs behind some company name It would be a lot harder for me to run away successfully. The cover up is the worst. They should have at least help me get compensation. The funny thing is they care more about ‘not writing lingering sexual damage from medications’ than my mental well being. It was all a show to ruin my life. Very sneaky and beyond cruel. I couldn’t do that to another let alone a 9 year old.
I’ve known psychopaths with more conscience.
Yes taking multiple drugs i believe definitely increases risk.
I have known quite a few people who have been treated by the mental health team who have been prescribed up to 6-10 + different drugs each day.
They were like a walking pharmacy, and they would have this drug planner thing, where they would dose their drugs at different times throughout the day.
They were even taking drugs to counteract the side effects of other drugs.
From my memory one person was on fluoxetine, risperadol, procyclidine, tramadol, morphine, ibuprofen, sodium valporate, paracetamol, omeprazole, lorazepam for anxiety, and zopiclone to sleep.
Most of it was given to him by the mental health team, after being diagnosed with bipolar disorder, and anxiety.
He took the morphine and tramadol because he had a cyst on his liver which caused him some pain, or something like that
He took this cocktail of drugs everyday.
He developed throat cancer a few years after i saw him on this cocktail. I often wondered if the cocktail of drugs he was taking, might have had something to do with it.
I apologise Spruce if you thought I thought you were advocating crack cocaine for us all! You made your point well, and I never thought that for a moment. I just meant that if one needs something to ‘blur the sharp edges’ when you are literally almost out of your mind with worry about something in your life over which you have no control, some stupidity by an authoritative body, for instance, which is keeping you awake in fear and frustration all night, then a glass of relaxing red wine (or maybe some malted milk drink last thing) can help. It takes down the stress level a bit. Lowers the cortisol.
The point you raise about multiple drugs being used at one time is very important. It seems bizarre to me that no one prescribing these meds ever seems to wonder about the synergistic effects of these things. We know that if you take Vitamin C along with some drugs, it magnifies their effect. We know that there are some drugs you must not take grapefruit juice with. So why are we not worried about drugs with other drugs?
We’ve been saying this since 1990 when we campaigned against organo phosphate being used in sheep dip. (Organo phosphates I believe were brought in as an ingredient of mustard gas in the First World War. And if one reads the ingredients list of chemotherapy drugs, I think they too have a link with mustard gas). So, you and DH are so right to stress to us all that these drugs are often poisons which used short term and when the alternative would be even more life threatening, can be very useful. But every doctor has to have his headlights on when offering them and be aware of this and watching out for any trouble. Not switching them off and turning away if things go wrong. And treating suffering patients who tentatively limp back to them with worries about unwanted side effects, as nuisances, or at the worst, ignorant idiots who know nothing.
IDK if it s allowed here but group accutane suffers created forum where people can discuss about PFS, PSSD, Post Accutane.
2017 study on PSSD
I have been brain damaged ever since taking 5mgs of escitalopram for a couple of months more than 4 years ago. The brain damage can be spotted as subtle dementia – which manifests itself most clearly as constant working memory problems – emotional numbing, skin numbness throughout the body, and PSSD of course. I feel detached 24/7. It must be some damage in the abstract self-awareness area. I also don’t, or can’t, care about myself or my surroundings even though I would very much want to. One needs feelings to that.
My impression is that PSSD and other SSRI-induced damage is permanent. What you gain back during/right after withdrawal period is what you get back. The rest of the damage/deficits are permanent. The message I got was same from the two local doctors that recognized what was going on with me. The better one of them – in my opinion – told me he had seen lots of SSRI-damaged patients coming to his office and that he knew none that had recovered back to baseline even after quitting. Lots of treatments had been tried with little to no help for anyone. I was also advised not to go to see endocrinologists – with high hopes at least – because they are in general clueless on what they have in front of them. Needless to say every psychiatrist gets very aggressive if you point out to them what they have done. Their defense strategy is to label you as psychotic next.
Most doctors don’t either know about SSRI-damage or if they know they don’t want to get involved. Obviously the political implications are tremendous if the truth someday finally breaks out in a big way.
Can you think about writing a slightly longer first person (anonymous) account emphasizing a little more the sexual elements – leaving the cognitive elements in but don’t make longer – and perhaps add a touch more about bad medical responses
We figure on putting up a few more first person accounts to help let the outside world get a better feel for the reality of these conditions