PSSD In The Guardian, U.S. News & Lyon Capitale

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July 4, 2018 | 44 Comments

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  1. Brilliant – absolutely brilliant. Let’s hope that now it’s out in the open, more and more journalists will dare to write about these topics too. As Heather said in a comment on the previous post, things seem to be happening in clusters all of a sudden. Not time for us to sit back and put our feet up though!
    Those of you far younger than myself will probably be well aware of the latest craze of pebble/rock painting. I came across it earlier this week. We used to decorate stones and leave little messages on them when we were young – but, then, that was the end of it. Today, with social media being available, it’s a very different story.
    I’ve got the ‘mums’ at our ‘mums and tots group’ to decorate pebbles ( which they loved and told us all about the online craze) on the back of which I’m putting a reference to RxISK.org, akathisia etc., handing them back to the mums next Monday and they will put them on the Prestatyn Rocks Facebook page. Apparently, you then wait to see how far the pebble may travel. The craze is going viral here (apparently!) and with the school summer break coming soon I felt that it was worth a try to get the Rxisk message out to the younger generation in a way that attracts them. A few pebbles, permanent markers and PVA glue is all it takes – a cheap way to advertise in my opinion.

    • I should have said that the pebbles are placed in the local vicinity before being photographed and then left there to be ‘found’. THAT is where I feel the Rxisk message might appeal to the inquisitive nature of teens. Also, being in a holiday area, visitors may find them and take the message home.

  2. It’s the doctors who we have to convince.

    The drug companies and regulators know about PSSD but don’t seem to care.

    If enough doctors know that this condition is real, it is more likely to get proper recognition.

    We just need to keep fighting until it can no longer be denied. I am really hoping sometime in the next 5 years there will be a big breakthrough.

    I feel so sorry for any young person who develops PSSD. PSSD is horrible at any age, but I feel getting it when you are in your teens or 20’s can be especially hard to deal with.

    There is so much pressure from society for young people in regards to being sexually active and to fit in, which is hard enough to deal with on its own, but having PSSD thrown into the mix, is just cruel.

    Also there are so many triggers in society for people who have PSSD in songs, music videos, films, TV programmes, magazines, books, banter with your friends, adverts, the list goes on.

    It is basically rubbed in your face everyday how wonderful sex is, and how everyone else is enjoying it, and how you should be too. But you can’t, and you don’t know if you ever will ever again.

    Then you go to your doctor desperate for help to find out why your genitals are numb and you can’t feel horny at all, and they laugh in your face, say it doesn’t exist, and the problem is in your head.

    Then you go to more doctors hoping a different one will believe you, and you get the same experience.

    Then you try to talk to a few people in your family, but they don’t seem to get it.

    Then you try to talk to a few of your friends, but they give you a weird look like they think you might be gay.

    Then you tell the wrong romantic partner, and when you fall out, they tell all of their friends that you have sexual problems.

    Then you go to the regulator, and they say “insufficient evidence”.

    Then you go to the health ombudsman and they laugh in your face and say “PSSD isn’t recognised by medicine as a real condition”.

    There are so many challenges that someone with PSSD faces, in trying to navigate their way through life and society with PSSD. It affects a lot more than just your ability to enjoy sex.

  3. This was an amazing post guys, really great to see awareness slowly gaining more momentum about this issue. I found the quote “for the most part” very interesting, doctors just try to brush that under the rug, make it sound harmless when in reality it isn’t. I went to a urologist recently and he must of looked at my genitals for no longer than 45 seconds and said, it looks fine. I said to him I don’t feel sexual pleasure and never have, i implied antidepressants can cause genital numbness post use and he just said no it lowers your libido, it should eventually come back… Sigh.
    Why do i feel like I could be of better help to people than most of these so called ‘specilaists’. If doctors aren’t listening to their patients, they’re certainly in the wrong line of work.

  4. A few weeks ago I sent an email to the MHRA asking them about what they intend to do about Persisting sexual dysfunction caused by SSRI’s, and about Rxisk’s petition to the MHRA to change the labels on SSRI’s to warn about it, and what action the MHRA intend to take in regards to this. I also outlined the effect PSSD has had on my life.

    Yesterday I got their response back.

    Below is the main part of their response (I have left out two paragraphs of their response as one includes my name and the other is just apologising for taking a while to get back to me)

    “We would like to re assure you that we have received the petition from Professor Healy and as these medicines are licensed across Europe, we are discussing with our European colleagues how best to take this issue forward”

    “We are looking carefully at the evidence base provided in the petition”

    “All data must be fully considered by the national competent authorities across Europe and discussed at the Pharmocovigelence Rxisk Assesment Committee (PRAC) of the European Medicines Agency in order to establish and agree the regulatory action needed. Once the procedures have been finalised and an outcome concluded the minutes from PRAC will be available to view on the European Medicines Agency Website”.

    “I hope this reassures you that we take this issue seriously and we are actively investigating the issue to ensure appropriate regulatory action is taken across Europe”.

    I felt it was quite a good response from the MHRA, by their standards at least, and it did make me feel that maybe PSSD is starting to be given the attention it deserves.

    I am of course a bit suspicious, as my past experiences with them has not been good, and we all know they aren’t to be fully trusted.

    Anyhow, time will tell.

    Below is the email they asked me to send my questions about Persisting sexual dysfunction following SSRI use, and the Rxisk petition to.

    yellow.card@MHRA.gov.uk

    If everyone can get on board and spend 10 minutes of their time and send an email to the MHRA asking what action is going to be taken RE Persisting sexual dysfunction caused by SSRI’s, and Rxisks petition to have the labels changed to warn that sexual dysfunction can persist for a long time after you come off SSRI’s, that would be great.

    It would be better to mention persisting sexual dysfunction caused by SSRI’s which continues after the SSRI is stopped, rather than use the terminology PSSD I think.

    It would also be good as well if you could mention in your email about how the persisting sexual dysfunction is affecting thousands of people, and that it is a horrible condition that can severely affect the quality of life of those who suffer it.

    You don’t need to have PSSD to send the email to the MHRA. The more people who email them and put pressure on them the better.

    Again the email is;

    yellow.card@MHRA.gov.uk

    Thanks

  5. As Spruce so graphically describes it,
    “Then you tell the wrong romantic partner and when you fall out, they tell all of their friends that you have sexual problems.”
    And then, driven into isolating shame on top of all the rest of the suffering, some, like our beautiful, funny, witty, sunny son, bang their head on the wall in horror, and a few weeks later, kill themselves, feeling there is no way back anymore to the person they once were ie before various vile influences, both medically and then ‘romantically’ and viciously this stupid older woman, changed everything for him. And as his mum, someone he used to josh with and share ideas and fears with, I was SO stupid and I didn’t know, I didn’t properly twig, till too late. And he couldn’t tell me, just like Spruce describes it. How could anything be worse for anyone than what Spruce has set out here. Olly used to say he wished he could have had cancer, at least people would care and accept his problem then.

    I don’t suppose this really fits the post, and it is to some extent simply cathartic for me, but I’d just like to offer, in the words of his professor at university, a little thumbnail sketch of the Olly we lost because, in the very end, due I feel certain to PSSD. Hearing of his death, and letting us know he would be attending his Memorial Service, he (a very eminent man in his field), wrote this:-
    ‘I have taught hundreds of students over the years. Most are forgotten, but a few, like Olly, make an indelible impression. He was allocated to my tutorial group; at the first session I gave each student the task of preparing a description of part of a cell. At the next tutorial he made such a perfect presentation that I told him he should be the professor of botany and I should be his student. At the end of his first term, he sat the midsessional examination, and if I remember correctly, was at or near the top of his year in all three subjects.”
    The professor goes on to say that (once the anxiety from RoAccutane kicked in the following Spring) “ in the thick of it all, he seemed so paradoxically cheerful and engaging.” He says he can only imagine how we must grieve for him. He adds “ it is hard to think of anything uplifting, but you have memories of his exceptional qualities and achievements, the privilege of his company.”

    So, PSSD ruined this young person’s future, and people might say, ‘where was his resilience, surely he could have over ridden this shame, the shame of PSSD. Well no, actually, he couldn’t in the end because after 11 years he was worn down by it. But I know for an absolute fact that had he lived, he would have been using his scientific skills in searching for a cure, along with the best of them, Spruce included, and that’s the value of the RxISK prize and all it stands for.

  6. We need to get Dr Healy or someone from rxisk on mainstream podcast like Dr Drew, and Joe Rogan to discuss this and to bring more attention to the 100k challenge.

  7. What about surges in libido or ‘disinhibitedness’ when we withdraw off these drugs – or when we get strong messages of a healing body and we start feeling better.

  8. By the way there are a few studies that examined sexual dysfunction after the discontinuation of the treatment: The study “Better sexual acceptability of agomelatine (25 and 50 mg) compared to escitalopram (20 mg) in healthy volunteers. A 9-week, placebo-controlled study using the PRSexDQ scale.” says “A follow-up visit (DEND) was performed five to seven days after the treatment discontinuation or after premature treatment withdrawal whatever its time of occurrence.[…]the deterioration of the sexual acceptability by escitalopram […] maintained up to the follow-up visit, one week after drug discontinuation.”

  9. This is just an example of how in the last two days I have been mentally tormented by having PSSD.

    I go on the bus to my friend’s house yesterday evening, and sit down a few seats in front of these two teenage girls. I can’t help overhearing them talk about how much they enjoy having sex, who out of their friends are cheating on whom, and which out of the lovers they have had, they enjoyed having sex with the most.

    Then I go to my friend’s house, and sometime during the evening my friend tells me that his mum told him a few years back that she thinks I will never get a girlfriend, as since she has known me, she has never known me to have one. He also told me his dad asked him once if I was gay. My friend knows about my PSSD, but his parents don’t.

    Then today me and my friend went to a carnival in a city near where we live, and most of the songs at the carnival were about love and sex in one way or another. Every one of those songs reminded me I have PSSD.

    I also had to watch lots of young couples walking around hand in hand, and seeming happy and carefree, enjoying the summer, while I may never be able to enjoy sex or have proper romantic feelings again. That hurts!

    Then we get home and my friend puts on a TV drama programme called extras on netflix, and the main characters are all recounting some of their sexual escapades, and how one of them lost their virginity.

    Then my friend switches over to love island and I have to watch a load of good-looking 20 year olds flirting with each other, and doing this sexy dance game where they are kissing each other etc.

    It’s rubbed in my face everyday. There is no escape from it, and I hate it!

    If this all went on for a few years and then came to an end, I could deal with it. It would still be horrible, but I could move on with my life before it got too late, and my whole youth was gone.

    But it’s been going on almost 11 years now, and I am 33. I am not getting any younger, and I have missed out on so much.

    Not to sound big headed but I was a good-looking young man, who had a lot of options with women and dating, especially when I was in my mid 20’s, but I feel my options are slowly running out as I get older.

    I never got to explore my sexuality properly, and although I have had quite a bit of pleasure less sex in the last 11 years, i feel massively behind and inexperienced compared to my peers.

    I feel there are 15 year old girls who have experienced more sexual pleasure in their lifetime than me.

    It is so emasculating and humiliating. It is a real everyday mental torment, and a daily battle to keep going.

    It doesn’t help either that I am estranged from a large part of my family who refuse to accept that I had any health problems as a young man, and who believe I just need to get my act together, get a job, and get on with life.

    I haven’t bothered to tell them how I couldn’t work for years because of benzodiazepine withdrawal, as I doubt they would believe withdrawal can go on for so long, and I have had to cut them out of my life because of how judgemental they are.

    They don’t know about my PSSD either, and I intend to keep it that way, as I think they would either claim I had convinced myself I had the condition by looking online too much, and/ or question it’s existence, or use it against me in some way.

    Having PSSD and going through benzodiazepine withdrawal has really put a big strain on most of my family relations in a lot of different ways. I also can’t be open or honest about my PSSD with most of them, as I really don’t think they would understand, and a few of them I think would use it against me.

    I would basically be admitting to being the family member with the sexual problems. I don’t think I could ever live it down. I have only ever told a select few people close to me about my PSSD, because of the stigma of having the condition.

    Also my sister has been really judgemental about the fact that I haven’t worked properly for years, and would often mention to my mum about when I was going to get a job and do something with my life. I tried explaining to her once about what happened to me with the benzodiazepine withdrawal, but she really doesn’t understand.

    My dad got so sick of hearing about me not getting better from benzodiazepine withdrawal, that at one point he was even threatening to cut me out of his will.

    Thankfully my mum has been really supportive and very understanding through everything I have been through; if it wasn’t for her, I genuinely believe I wouldn’t be here today.

    Having stuff like PSSD and going through benzodiazepine withdrawal makes it really easy to be kicked around by society. You can’t really be a fully functioning part of society going through drug withdrawal and PSSD. And while there are some people who can be empathetic and understanding about your situation, I have experienced enough people who would rather kick you when you are down.

    I am 33 now, and the average life expectancy in the UK is about 76 or something. I seriously cannot see me lasting out the rest of my natural life with no sexual feelings and numb genitals. It is a life sentence of torment and torture.

    There has to be an end to this, I can’t live out the rest of my life with PSSD.

  10. Spruce,
    I always find reading your accounts so very sad – you have, without doubt, put up with the most horrific eleven years that anyone could imagine. To be honest, I don’t think any of us CAN imagine – it is beyond the scope of our imagination.
    Having read your latest piece, do you know what, I think that you may gain something from telling your whole story to every member of your family. You haven’t got their support now, so, basically, what have you got to lose? They can judge you all that they like but ONE DAY, hopefully soon, you will be able to turn round to them and show that you were not to blame for how you have been. You have not imagined your condition – it is absolutely real. You are not a lazy person but the total opposite – every ounce of energy in your body has been used to cope with the losses that you describe. You need the support of your whole family – I sincerely hope that you will get it if you decide to share the reality of your life as it is at present with them all. My thoughts will be with you as you decide the best path forward for you – a path that no one else should push you onto but I hope that it is right for us to simply offer our suggestions; your wellbeing is our main concern. Good luck with whatever decision you decide upon.

  11. Reading this article makes me wonder, would the prize money be better spent funding an advertising campaign of some sort to build awareness rather than a prize for a cure? If people don’t even know they have it, this campaign could be used to make them aware that the drugs caused the issue. To my understanding a cure will take a lot of money and research, so perhaps a better way to move forward is to spend the money to run commercials, newspaper articles, etc… This will build more awareness and perhaps further action and fund gathering to do research.

  12. Maybe NowThisOpinions would be open to this as they have just released some videos like this recently…? They get huge numbers of veiws just on facebook…

    Almost a million just for this one that talks about the lack of informed consent/choice and long term harms

    https://www.facebook.com/NowThisOpinions/videos/1986349291455185/?hc_ref=ARTuWKkKdze6H_DcQIQuU40hBo78je3DWGLfuMaDVfGF88wWJeYCv8vZXr8BMIQO2KA&fref=gs&dti=804294912959118&hc_location=group

    Also agree with Spruce regarding maybe Joe Rogan’s podcast would be open.

  13. This is an extraordinarily good point you have raised, Mary.

    Shane has been very, very lucky with his astute mother, who not for one moment accepted that Shane had a problem other than having Seroxat, other drugs, on his case..

    After a Seroxat Experience the pair of them found David Healy, went to visit him, did all their own research and to this day go well out of their way to assist other folk who may be in, or may, in the future, have similar problems..

    I just wanted to say that students who commit suicide have usually left home, have become independent of their parents and are all set on a course of life away from mum and dad. It is not necessarily a big jump as many students are ferociously independent and can’t wait to leave the bank of mum and dad and have a life outside of family…there’s a big wide world out there ..

    I loved my mum and dad but they weren’t the be end all. I used to call them often, usually not to discuss a new job opportunity or where I was travelling to next. I used to tell them what I was doing and I never expected to have a whole discussion about it. We had the trust, I would do what I wanted to do, and it really never occurred to me that they might not approve or might not even like my choices in life.

    What I am getting at is that at a certain age, kids, are ready for the big wide world and actually don’t particularly want to confide in their parents. They are super bright.

    Which brings me to yet another suicide by a student who didn’t confide in his parents.

    The journalistic report gave a couple of lines about the new drug and how he felt worse and that was that.

    We don’t know what the drug was, we don’t know the doctors reason for giving this drug to this student and we don’t know if it was yet another adverse reaction.

    I went out of my way not to divulge any facts of my Seroxat Experience to my remaining parent, or, to my child, because if I had it would have caused too much distress and would have been something they would not have understood in a million years…I knew that because I had too many doctors doing much worse things to me…and it was completely evident to me that dragging along a family would have caused confusion, upset, and, perhaps some disillusionment. of myself.

    So, I think, its such a fine line, entertaining parents, and, I really think that one has to think extremely carefully about the need to involve parental figures in to the depths of despair, that someone like, Spruce, is having to face …

    RxISK will never replace those dearest to you, but, isn’t it worth someone like, Spruce, just knowing that everything he says is listened to and we all feel his grief and pain and can offer just a little family of support to keep him going …

    http://www.dailymail.co.uk/news/article-5938205/Astrophysics-student-took-life-amid-exam-stress.html

    Isn’t it possible, that many, many outsiders will understand this so much better and knowing what they know shift the balance, slightly

    You have to go where the kindness is …

    • Thanks for your kind words Annie. You are absolutely right that youngsters must be given every chance to become independent and I’m sure that you’ll agree that, as parents or foster carers, helping them to achieve that independence is part of our role and we should always (through thick or thin) be available to support them in that. Shane had successfully become independent before Seroxat entered his life. His living separately, to my mind, was one of the reasons why it took three whole months for us to realise exactly what was going on. Keeping our distance was our way of providing time for him and his partner to settle into their new life together. Once the stranger (Seroxat) caused its havoc, the courts demanded that Shane remained under our roof. It is at that point that we became fully aware of the depths of difficulties and behaviour changes that had taken place. He now lives independently once again – with our full support when he needs it.
      I agree that many who take their lives are already independent but would like to add that many too are below that age. The problem, as we know, is far more to do with medications given out than it is to do with whose roof that youngster lives under at the time.
      My comment to Spruce concentrated more on what may be the best FOR HIM – his whole family takes second place, but a very important place, in all of this.

  14. What next! Published today on CBC News :- Federation has ordered Health Canada to release Confidential Drug Data on HPV Vaccines’.

  15. “It may also have helped that the comments were moderated.”

    Moderation… Used to be called censorship.

    Now we worry about politically correct discourse to enforce outright fraud and lies!

    ” Take your goddam pills… it’s good for my wallet…”

    You can bet there’s a lot of “doctors” saying this…

    • Interesting comment Scratched Record: I think I’ve actually just been moderated/censored as my comment has not appeared.
      I had raised 3 points,
      (a) I had tentatively agreed with Mike about the use of RxISK prize money partly for ad ertising about AKATHISIA,
      (b) because I had suggested to Spruce in response to his latest comment, that ‘don’t complain, don’t explain’ might be a better approach, for his own mental peace of mind, with his unsupportive family members, contrary perhaps, with greatest respect, to Mary’s advice, because we also had suffered adverse and closed-minded family attitudes about our sons struggle with AKATHISIA, and finally,
      (c) I had suggested it would be great to have a sort of RxISK recommended reading list, telling us of books written by RxISK contributors, maybe not even ‘recommended’ but just to tell us they existed. I think this helps everyone, to read other’s stories and to know thus, like CS Lewis stated, ‘we write, to know that we are not alone.’ I don’t have a book out there, so this was not self interested 😊 but having just read Laurie Oakley’s admirable and brave book, I feel uplifted and encouraged in the endless struggle. I didn’t know till now that it even existed. I am however puzzled as to why any of the above ideas I’d expressed would have caused me to be censored. Perhaps I am being very stupid and missing something. Enlightenment please.

  16. RxISK has started on a fundraising for research and why move the goal posts when we have reached an impressive figure

    University students are most likely to confide in friends being away from the parental nest

    Laurie Oakley has been on the blog for many years and is just one of a number who has told her story

    4th July 2018: UPDATE
    http://www.auntiepsychiatry.com/Auntie%20Psychiatry.html

    4th July 2018: UPDATE
    I’m happy to say that Laurie O. has found my website and e-mailed me to ask for permission to use this cartoon for tee-shirts. Absolutely! I only have one goal with this work – to raise awareness – so please feel free to use the images for that.  Re-visiting the cartoon, I realised it works perfectly well as an actual wordsearch puzzle, so here is a blank version for people print off and distribute – Go nuts!

    If we all pay attention to over six years of DH blogs and RxISK Stories, David in his busy schedule won’t have to re distribute what he suggests as reading material..

    How many have read:

    Dear Luise
    The Pill That Steals Lives
    Crazy And It Was
    The Evidence, However, is Clear
    A Sketch of the Life of Elizabeth T. Stone and of Her Persecutions

    https://davidhealy.org/doctor-munchausen-dear-luise/

    Dear Luise by Dorrit Cato Christensen is one of most extraordinary books about healthcare ever written. Medical books are usually about great discoveries, great endurance, or triumph in one way or another. Dear Luise is about the dark side of medicine – the side that offers doctors the opportunities to kill without detection. It is set in mental health settings but the story of power and powerlessness can be found everywhere from the offices of primary care doctors through to arthritis or cardiovascular clinics.

    • Would love feedback on interest in this shirt idea. I’ve heard it may still be a little too graphic, and perhaps too complex. Have also heard from a friend who would wear it despite his own suicide attempt by hanging. (Hurts to even type that).

      Here’s a book that was featured on Rxisk that gave me a healthy fear of rare but 100 percent tragic adverse events (SJS, TENS, DRESS) from several common medications. Post surgery I quickly discontinued Tylenol, ibuprofen, (and opioids)..in large part because of this book. It wasn’t as difficult as one might expect.

      Hannah Was Here.
      https://rxisk.org/dress-syndrome-no-way-to-treat-a-lady/

    • Thanks Annie, that’s most helpful. I’d read the first 3 but not the others. Now I will. I have only been aware of RxISK since my son died and another bereaved parent in our group of RoAccutane sufferers directed me to it. It was around the time ‘The Pill’s that Steals Lives’ was being promoted on RxISK and available for pre-ordering. So I am not, to my shame, up to speed with all the books, so I am grateful to you for this list. Have you knowledge of any more? I’ve read Bob Fiddaman’s book and of course, the amazing ‘Anatomy of an Epidemic’ by Whitaker which no home should be without. I’m on a learning journey and grateful for any pointers anyone can offer.

      I am busy with others fund raising for the RxISK Prize, and I didn’t mean change the goal posts, but I do feel AKATHISIA publicity would avoid some deaths like our son’s, whilst we await the cure from the major project. Obviously I speak from a biased viewpoint and I apologise for that, I guess we all speak from our own experience. I take on board what you say about young people being independent, away from home etc, and indeed our son was, but I think most parents know their own youngster and are best placed to raise the alarm when things start going wrong. If we’d known what AKATHISIA was when our son rang us in fear of madness in the middle of the night from Uni we could have acted swifter and with more effect. At the end of the line, one’s mum, even when 21, even when 32, and all the way between, is normally the one one turns to for understanding and rationality in grave situations. I sadly lost my fantastic mum when I was 24 and have felt the loss very keenly ever since. Without her, I did not have that sounding board which had been such a strength until then.

      We can see the value of a good mum in Spruce’s story. Thank heavens he’s got a sensible caring one. She knows him, she knows his suffering, and she will stand by him to the ends of the earth. As to your other relatives Spruce, they sound like most of ours. I don’t know why people feel the need to behave thus, but it’s their failing, not yours. We’ve found that supportive friends have, in the most part, replaced our family. The kind of relatives you get are down to luck. We have some absolute horrors in my husband’s family who have caused us enormous problems and tried to undermine us at every step when we were trying to get help for our son. But personally, having gone through all the explanations to them about what happened to Olly, referring them to books like Robert Whitaker’s (about which they roll their eyes and won’t read) I really have given up on them. Why do we need approval from these unintelligent beings? One day maybe they will suffer similarly and then they will get it. Also, don’t forget, why do we struggle to get Simon Wessley et al to wake up and accept our evidence? We won’t turn them round either because they have their own biased agenda, based on self interest and unwise associations. So, we plod on with our crusade to safe others, and leave them by the wayside. They will ALL get it one day, but in the meantime, we have much serious work to do, linking arms in solidarity, and the devil take the hindmost.

  17. Thanks for people’s comments and support RE my family situation.

    I think Heather’s advice to “don’t complain, don’t explain” is what my gut is telling me is the best thing to do.

    Unfortunately my mum’s side of the family really aren’t very nice, and are quite elitist and snobby, and really look down on people who don’t work, and who in their eyes haven’t achieved much in life, or who haven’t gone to university etc.

    I am basically seen as the black sheep of the family, and they along with my sister have often complained to my mother about the fact that I didn’t have a job when I was going through benzodiazepine withdrawal.

    In fact I feel a big part of the reason I developed OCD, and ended up taking citalopram and benzodiazepines, was because of how I was treated by my mum’s side of the family when I was younger. I don’t mean to play the victim, but I do feel there is a lot of truth to this. I haven’t spoken to them for many years for a reason.

    Nearly all of my cousins have got married or are in long term relationships, have bought houses, finished their education, had children, and have careers.

    None of that has happened for me because of PSSD and benzodiazepine withdrawal, and I feel opening up contact with them is likely to turn into another opportunity for them to look down their nose at me.

    Luckily I have one Uncle who is quite open minded, and isn’t judgemental. Also my mum is very supportive and understanding. Those two and one Aunt on my dad’s side of the family, are the only people in my family I really bother with.

  18. Heather and Laurie, sometimes I wonder if we should move away from Akathisia on a T-shirt, what would be comfortable in wearing in to a ‘medical practice’ ..

    The gaping hole of grief says so much for the hole that mothers have lost their dearest child and Kristina puts it so well and in context

    Kristina K. Gehrki‏ @AkathisiaRx 2h
    Replying to @stephy501

    Visually spot on, Steph. There’s no cure for a broken heart~and many hearts are broken by the psychiatric industry.

    Stephanie Mcgill‏ @stephy501 Jul 14

    The gaping hole of grief…Lake Geneva, Switzerland..

    https://twitter.com/stephy501/status/1018240522043969537

    kevinpmiller‏ @kevinpmiller Jul 12

    “I’m very sorry. I have failed. But it’s okay. . .I’ll be much happier this way. Bury my body under a tree, somewhere deep in the woods.” -Natalie Gehrki, from ‘Netherworld.’ WATCH This short film for FREE:
    https://www.youtube.com/watch?v=1haYwZGcSRY … – #akathisia #antidepressant #zoloft #Sertraline

    Netherworld: The Tragic Consequences of Prescription Pills

    https://rxisk.org/kidnapped-natalies-story/
    https://rxisk.org/kidnapped-natalies-story-2/

    The gaping hole of grief …

  19. Sadly, for some, it will always be about their self-interests and their image.
    No one else matters or mattered.
    Mary and Spruce, understand all too well what it feels like to deal with people (including family members) who don’t care.
    Been there, done that!

    • Carla, – may I just correct you and say that I’m one of the lucky ones with a very supportive family; Heather and Spruce are the two to which you refer. Having the support of my family means that I have been able to share the Rxisk Prize campaign with them and each one, who possibly can, has financially supported it. I couldn’t have carried on without them!

  20. Spruce this is very common in families anyway. Just because some do well doesn’t make them any better than you. You are enriched with knowledge and have understanding and empathy for others in your situation or similar. You are more educated than them in this subject and have something to offer others in your situation. Even rich wealthy people will fall ill and die one day so they can’t be that intelligent or clever can they?. I find people like this pretty narrow minded and not that intelligent to be honest and who would want to be ill around people like that anyway? Best to have people that love and care for you around you than spiteful, vindictive, nasty people.

    So them ignoring you they have actually done you a favour because you don’t even have to tell them to get lost. Then when one of them is ill tell them to stop moaning, get a back bone and get over it.

  21. Laurie, re the T shirt design, if you are happy to, I should go ahead and test the market by getting a few of Auntie Psychiatry’s images of the wordsearch design printed, start wearing one and see how much comment it generates. Because it’s so subtle and clever, it may well spark a lot of intelligent interest. I’m instead going to make my own simple version with just the words AKATHISIA wriiiten in blue zigzags (to denote the horrible agitated buzzing feeling that it can induce) but also with the http://www.MISSD.co below ‘don’t RxISK it’ so people can see the little animated film on there featuring Katinka Newman and created for the Dolins, which makes it clear in a couple of minutes.
    I’m frankly not too worried about what people think when I go into a medical practice, ie i don’t fear the doctors’ wrath if that’s what Annie means? I will be glad if people in the waiting room notice, but anyway I so rarely go there that not many will. We have however offered in a friendly card, to go in and give a short talk to the group of GPS at their practice meeting, so we will be wearing the T shirt then if we get an invite. We are not however holding our breath. We shall definitely be wearing this message to the Suicide Crisis in September.
    I think the point about wearing it on a T shirt is that it is more convenient than lugging a cardboard banner everywhere, because you can only hold this up at meetings where you get an opening to speak. We have put spreading the AKATHISIA message to the test over the last 2 years this way, and tried to get information made more public and people have been very interested but the audience is limited. We feel it is the major cause of prescribed medicine-induced suicide, which is where this subject string began, asking what we can do about suicide. I don’t think therefore we should feel we should move away from AKATHISIA on a T shirt, unless Annie means we should have AKATHISIA emblazoned somewhere else😊? A tattoo maybe…..

    • If the wordsearch/ akathisia design is deemed rather unworkable or too costly, why not go for something simple eg Akathisia
      Anybody?
      On RxISK.org
      This is one of the slogans that I used on the pebbles – and the one which created most interest. I think some thought there was something to be had for free. I explained that you can get it, quite freely, if you take a variety of medications!

    • Terrific suggestion Heather.

      I can wear the: —

      “AKATHISIA” —- “DON”T RxISK IT”

      —- tee-shirt for my next hospital appointment.

      If there should be a need for heart/lungs examination – let’s hope one of this month’s newly graduated junior doctors next sees the massive

      “AKATHISIA” —- “DON”T RxISK IT” tattoo across the back!

      Every newly licensed prescriber must understand, recognise and effectively and safely manage AKATHISIA.
      Few will have even heard the word.

      If only I had experienced such a brilliant educational opportunity as a newly qualified houseman in the 1970’s.

      It would almost certainly have been one of the most valuable post-graduate learning opportunities I could have had.

      I would have been so much more aware of serious and life threatening, prescription drug ADRs throughout the next 40 years of medical practice.

  22. You know it’s not just PSSD that kills any romantic get togethers it’s the shame and isolation of protracted withdrawal. I mean you start talking to someone of the opposite sex and what is one of the first things they ask, what do you do for a living. Well what do you tell them, nothing. Try telling someone that for the last eleven years you have been crippled by the effects of psychiatric drug withdrawal. They will run a mile.

    I feel like a freak, an outcast a social leper, all through no fault of my own. The other day I was subjected to a vicious totally unwarranted verbal attack from a nasty horrible person regarding the fact I don’t work and had the temerity to be having a drink in a pub. Without knowing why I don’t work this person in front of others made snide remarks about paying for my lifestyle etc. If I was to tell this fool why and how much I have cost the state because in my view the state did this to me then would their opinion change.

    No wonder I tend to isolate myself now when in the past this would have been anathema to me.

    • Damian, it would be very interesting to calculate the cost of your ‘disability’ to the country over the last however many years. Not only is there the cost of your prescriptions, appointments etc. but also your benefits, housing costs and so on too. Against that you could put the ‘cost’ to you personally – lack of job satisfaction, lack of energy to follow hobbies or pastimes, lack of confidence etc. You could finish off by adding a few equations such as :-

      normal adult + psychiatric drugs = a dissatisfied, costly lifestyle
      normal adult – psychiatric drugs = ? ( unknown territory)
      normal adult with no psych. input = a satisfied, worthwhile life
      Would the penny then drop I wonder?

      • Yes you are right. When I hear about austerity I find it a sick joke as regarding myself. I calculate the cost to the state in the hundreds of thousands of pounds. Just think about that for a moment, one individual who because twenty years ago started an SSRI has so far run up a bill of that magnitude.

        Hear is a breakdown.
        Cost of prescriptions, not just psych drugs but others to deal with problems caused by these.
        Cost of state benefits and housing benefit.
        Bus and train pass as I am not safe to drive.
        GP and specialist appointments.
        Hospital admissions, for example my blood pressure was lowered so much I broke my leg whilst fainting, breathing problems leading to a collapsed lung.
        Damaged hearing requiring hearing aids costing thousands.
        SSRI alcohol cravings requiring substance misuse services and inpatient detox which didn’t work as I was still on the offending drugs.
        Whilst on polypharmacy and drinking, problems with the law. Court costs, probation, police, prison.

        There’s probably more but does anybody really believe this is sustainable. This is just one person, multiply that with countless others. Never mind the cost of me not being a productive tax paying member of society and the chaos and hell visited upon my personal life.

        Every single MP could do with being aware of this.

        • Damian, you’ve put your case really well – my son’s care total would add up very similar to yours and all because (in his case anyway) a doctor decided that his ‘anxiety’ needed a pill to sort it out. How wrong could that be!
          We have illustrated two cases here – how many more could be added to this? We know from reading comments here and elsewhere that very many are in exactly the same boat as the pair of you here in the UK. Add that to the picture worldwide and the mind boggles!
          As with so many other issues, those in power would rather keep certain companies happy than stop and consider the ‘cost’ (financial and personal) to society. This morning, the BBC has been commenting on the number of children now on ADs. Here again, we are looking at an increase to the overall ‘cost’ to society. That cost, of course, pales into insignificance when we consider the ‘personal cost’ of such an increase.
          what a sad state of affairs!

  23. Hi Damian Truth is you aren’t doing ‘nothing’ – but If you feel you need to tell them anything – and it’s a tricky thing to deal with as you say – what about saying you do freelance work with a group set up to investigate the harms of prescription medications and that you prefer to work at home liasing with your colleagues using skype/internet. That’s the way many people work now.. Then just say you will leave it at that with that particular group .It doesn’t seem as though they would listen to anything serious.. If a real friendship seems to be developing the gradual approach gives time to introduce the situation more slowly than coming straight out with it. Cheers – enjoy your drink in the sun – at a different pub if possible.

    • Damian and Susanne.

      Thank you Damian for identifying these two dominant reasons why those who’s lives, and life opportunities have been devastated by psychotropic drug induced injury remain socially isolated.

      If only they could have insight into how courageous it must have been for you to go into this pub .

      1) SHAME, is a constant companion.
      WE must work to transfer that SHAME to the prescriber.
      The prescriber currently carries no shame.

      2) Living in constant DREAD of being asked:
      “WHAT DO YOU DO FOR A LIVING”?

      These twin terrors delay recovery and produce increasing social withdrawal and isolation.

      I think Susanne’s suggested response is so valuable and pragmatic.
      It is close to a perfect answer to a seemingly impossible question.

      I have seen this tragedy delaying our daughters recovery, and preventing her re-integration into a fulfilling life, many years after completion of psychotropic drug withdrawal.
      (Drugs prescribed for “exam stress” by a prescriber who was clearly unaware of their ADRs).

      The dual impact of inappropriate SHAME and fear of being asked – “WHAT DO YOU DO FOR A LIVING” exacerbate the endless bereavement for the previous rich and fulfilling life stolen by cavalier prescribing and misdiagnosis of akathisia.

  24. Just to let people know I have some sad news.

    On Saturday 21st July, a friend of mine called Ali, who I had been chatting to for many months, and who was also
    known as Angel on Rxisk, took his own life.

    Just before taking his life he had expressed to me, that he had tried so many times to get a doctor to believe him about his PSSD, but that no doctor would believe or listen to him, and he felt hopeless because no one would believe or listen to him.

    He also expressed to me that he was sick of living with PSSD, and that if he didn’t recover he was going to take his life.

    Here is a link from the PSSD forum about his death.

    http://www.pssdforum.com/viewtopic.php?f=10&t=2206

    I feel so bad about it. He was only 23.

    • Spruce – So very sorry to hear your sad news. No doubt all that will go on the certificate is ‘suicide’ Shame on them all. Take care of yourself as much as you can – you will always have real friends on DH blog – susanne

    • Spruce, what devastating news. Our thoughts are with you. Angel/Ali made a decision based on ‘life’ as it had turned out for him – and decided (not that he wanted to die) that he didn’t have the energy to carry this burden any longer. I dislike the notion that someone who takes their own life ‘wants to die’ and feel that it is actually a case of ‘not wanting to live in their present state’, which is a very different scenario to my mind.
      Ali made that decision Spruce, shared those plans with you and I’m sure that you comforted him at those times. You must not hold yourself responsible in any way for his decision. When he needed you, you were there for him – that is as far as your responsibility went. His decision was his to make – a decision which, naturally has left you feeling devastated. All the more reason now to fight on for that cure – so that Ali’s death will not have been in vain.

  25. Very sad to discover that Ali took his life, Spruce.
    Some people in the medical establishment, should hang their heads in shame for how he was treated and how they made him black/blue, just before he sadly passed away.
    When people are judged, mocked and ridiculed, it makes you understand just how unintelligent some humans are and as for those who sided with these professionals, I just don’t know how you got a degree as a doctor.
    Many of you, deserve to have your licences stripped away just for the ‘lack of duty of care’ you exhibit.
    This poor man was suffering and no one gave this poor man an ounce of compassion.
    What a waste of a good life?

  26. ..meant to add – DH and Rxisk and other places where people have found understanding and share your hurt and outrage

  27. I told him to try and hang on and that he was still very young and that things could change in the next few years.

    Although he was talking about suicide I never thought he would actually go ahead and do it.

    It was the same frustration at not being believed by doctors and one nasty experience from yet another doctor when I was desperately trying to get someone to believe me about PSSD, that I felt pushed me into making a suicide attempt in 2012. Mine was more of a cry for help than a serious suicide attempt, but I was lucky to come out of it without seriously hurting myself.

    I still feel angry at how badly I was treated by that doctor to this day. Then what was even worse was the next day I was having strong feelings of wanting to harm myself again and my mum called 111 and the police and an ambulance were called to her house.

    The police insisted on calling the crisis team because of how agitated I was feeling. Then having to listen to that complete bitch from the crisis team who knew about my complaint against the psychiatrist, telling me if I had wanted to kill myself I would have done, and she also asked me why I hadn’t killed myself if I had wanted to, and stated she knew about my complaint and that there was nothing she could do to help me, and then asking to speak to my mum and asking her if I was violent (I have no history of violence) and then telling my mum to call the police and have me arrested if I started getting aggressive. She then put the phone down on my mum. I swear on my life she actually said these things when I was at the lowest ebb of my life. It was extremely harsh.

    I came close to impulsively making another suicide attempt after the way I was spoken to by that woman. I think that woman from the crisis team was the worst I have been treated by another human being in all my time on this planet. There was not an ounce of compassion or empathy for my situation from her, and all because I had dared to make a complaint about how I had developed PSSD and how my ex psychiatrist wouldn’t believe me.

    Even the police were really angry about how she had spoken to me, and told me the mental health team was useless.

    It’s the reaction and treatment from doctors and the medical establishment in general that pushes a lot of people with PSSD over the edge in my opinion.

  28. Spruce, I am so sad to read about Angel/Ali, but can totally understand how he must have felt and why he left. To think that people are routinely treated with such appalling lack of respect, and total absence of compassion when they are so vulnerable, is heinous beyond all words. They did it to our son Olly too, and he felt if doctors, those gods of all knowledge and power to heal him (apparently) couldn’t understand his suffering, and help by reaching out in his hour of need, then what hope was there. I feel they murdered him. I think of the quote from Inspector Morse in the TV series ‘suicide, when driven to it by another, becomes murder.’ They’ve murdered Ali too.
    I’d like to add that the police in our son’s case were kindness itself, and also said, like the ones you cite, that they were appalled by what my son’s psychiatrist did to him, on the one previous occasion when he attempted to end things. They said he should change to a different psychiatrist, and he was trying to, but the NHS system made him wait 3 months for a new appointment and in the meantime his ‘Care’ Co-ordinator social worker kept saying the same as you report, ‘ if you’d really meant to kill yourself you’d have done so’. This man was no doubt acting on the psychiatrists instructions. These individuals are taking a gamble with the lives of vulnerable trusting people. So often their brinkmanship fails. They express a bit of crocodile tear-type sorrow and callous ‘surprise’ at what happened, and then carry on as before. I hope they pay handsomely in the end and suffer all they have inflicted, and then some.

  29. I couldn’t agree more Heather.

    I genuinely f**king hate AWP and all the doctors that have either disbelieved me, laughed in my face, or turned a blind eye to what has happened to me.

    Nearly everyone I have talked to who has developed PSSD harbours similar strong feelings of hatred at the way they have been treated by their doctors after trying to tell them that they have developed PSSD.

    I still can’t believe all of this is real, and has happened to me. Everyday I wake up and still can’t believe I have PSSD.

    You could write a horror novel about PSSD, it is like one of the worst things that could happen to a person.

    The man who woke up one morning, couldn’t feel his penis, completely lost his libido, couldn’t orgasm, have an erection, or feel romantic emotions or a number of other emotions, and all at the start of the prime of his youth.

    And here’s the kicker; he was told there’s a good chance this could last forever! Not a week, not a month, not a year, not a decade, but FOREVER!

    And not only this, but nobody believes it is real, all of the doctors think it is in your head, and you have to deal with it totally alone.

    We should call up Stephen King; he could write a good horror novel about PSSD.

    The thing is people who develop PSSD are especially in need of kindness and support, but they end up getting the complete opposite.

    A lot of people who I have talked to with PSSD often end up estranged or distant from their families as well, often because as the years go by there are awkward questions about why they don’t have a spouse, and they don’t feel they can really function as they did before within the family unit.

    They carry the secret of having PSSD (and keeping this secret is a burden in itself), as they can’t really be open and honest with their families about what has happened to them, because of fear of ridicule, being disbelieved or being misunderstood.

    Couple this with the nasty and sometimes down right spiteful reaction from doctors and the medical establishment, and maybe a few bad or embarrassing sexual experiences, where they may be ridiculed or misunderstood by a romantic partner, and it is easy to topple someone with PSSD over the edge into suicide.

    There are no helplines available either, or any formal ways of getting emotional support, or just someone to listen to you to get the angst of living with PSSD off your chest.

    Then there is the stigma and shame and the feelings of emasculation, which would be enough to bring a lot of people close to the edge just on its own.

    Over the years there are also the regrets from lost loves or relationships that could have been, but which either didn’t happen, or fizzled out, either directly or indirectly from PSSD.

    This can be especially hard to deal with. That girl who would have been perfect for you when you were 25, but who you missed your chance with because of PSSD, and now she is happily with someone else, and you are still stuck with PSSD, with no end in sight.

    Also there is the realisation over the years that you are gradually getting older and slowly losing your looks, and your opportunities to get the ideal partner that you want, are lessening a bit with each passing year.

    Then there are all the daily reminders and triggers for someone with PSSD; the love songs on the radio, the TV drama where Peter finally gets together with Jane, watching couples walk hand in hand down the street, hearing about your cousin’s wedding, your friends going on about their love life, watching a wildlife programme where the animals are all mating. The list goes on. There is no escaping it.

    PSSD is in many ways a war of attrition. You have to endure all of the above, year after year, battling through constant thoughts of suicide, as you watch your youth rot away, hoping that one day you will heal, and the fact that you kept going will be worth it.

    It never really gets easier, but over the years I have found a few ways where I have adapted a bit to living with the condition.

    I feel the first few years of living with PSSD are often actually the hardest, and carry the highest risk of suicide, as it is still fresh in your memory about how amazing sex can be, and now it has all been taken away from you, and you may never get it back.

    But for some people PSSD can grind you down over the years until you are so exhausted with denial after denial from the doctors, and all the other complications that come from living with PSSD, that it eventually just wears you down until you can’t go on anymore.

    A state of persistent and unacknowledged mental torture with no relief is the best way of describing PSSD.

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