$100K and a List of Doctors

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December 14, 2020 | 43 Comments

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  1. Questions – my former MD is now a student health clinician and replied that being on the list wouldn’t help anyone since she doesn’t take outside patients. I said that I trust she would support any of her students with PSSD (she supported me with post-benzo damage) and that it would encourage others if her name were added. So is this correct, and if she decided yes then would it mean people will contact her when she’s unable to help them? Also do the names of those who decline to be added remain private after we send you the details?

    • Laurie

      She can say no to people from outside her remit. But knowing she is on the list may help students who are from institution approach her. We are not making public the names of those who decline to be added.

      David

  2. Why can’t all practitioners go on the list?
    If they are passionate about what they do and are genuinely concerned about their patients’ health and general well-being by acknowledge the harms these meds induce, why would they be so reluctant to go on the list?
    The more the better.
    Are we patients who have been impacted, asking for too much?
    Some practitioner are well aware about PSSD because many patients are afflicted with this when they have radiotherapy or chemotherapy for cancer.
    I believe that many still ‘bury their heads in the sand’ because they do not want to confront that the tools they use can damage or they do not want to bite the hand that feeds.
    We are in 2020 and I am certain this kind of information is the ‘talk of the town’ amongst the medical establishment. I don’t believe that so many practitioners are that naïve!
    ‘Come on all you practitioners, get on board and help all the people who have had their lives impacted by these life altering meds!’
    Who is going to be the voice to the voiceless?
    I want to see that target reach the voiceless, so that it gets on the front headlines of the papers, so that everyone is made aware of the RXISK these meds induce!
    Too many practitioners are satisfied with the current futile status quo and are too scared to put up their hands to something and go on that list, because of fear.
    Many patients would appreciate it if practitioners go on that list and advocate for their vulnerable patients.
    Stand up for your fellow man!

    • I’m still trying to figure stuff out over here. I’ve got an appointment on Thursday to have my eyes looked at related to t2dm they have gone a bit blurry that’s why I can’t do anything without my glasses. I can’t read the labels on stuff in the Coop without my glasses the last time I had no glasses I accidentally bought an aircraft carrier when I just needed some milk.

      I have also spent 5 years telling Southern Electric they need to send a fella here to change the cut out fuse before attempting to change the broken meter. They keep sending fellas here who say they can’t change the meter if the cut out box isn’t changed first. It’s simple logic they know what to do but haven’t managed it yet. I’m not bothered the meter failed safe and left me with free Electricity.

      https://youtu.be/_CwfCBa6PSM

  3. I know 3 doctors who believe me that I suffer from PSSD, but there’s nothing they can do. I’m sure they wouldn’t want to be contacted by other because they wouldn’t know how to help them.
    Is this list for MDs who do active research?
    Thank you for clarification!

    • T

      There can be a lot of help that just comes from recognition. It may be that if RxISK or anyone else claims to have a good candidate drug to try, you will need a doctor near you to prescribe it – or perhaps even believing in PSSD to advise you that this doesn’t look to them terribly safe and perhaps caution you to wait a little bit to see what happens others

      D

  4. I could really benefit from talking to a doctor in Denmark who acknowledges PSSD. I’ve suffered from it since I was 20 years old and I’m now 33. My sexual function was completely fine before I took Lexapro despite having suffered from depression and anxiety for several years. 13 years later and i have more or less complete genital anesthesia and the most severe sexual dysfunction imaginable. It’s truly ruined my life and the simple lack of recognition simply makes it worse.

    • A

      One problem is that throughout the Western world it is increasingly difficult for a doctor to see anyone that does not fall specifically into the area that the organization they work for covers.

      If you have found or find anyone in your area, please let us know – we’d like to build a map

      D

      • I’ve already tried visiting private urologists and the moment I brought that it started with antidepressant treatment it was brushed off as psychosomatic. They even refused to read the fairly few papers I brought about information about PSSD. Ever since I started voicing the problem to the psychiatrists they have decided it’s a bodily delusion and (shock and horror) very unsuccesfully tried to treat it with antipsychotics(including the ones that cause sexual dysfunction themselves). Because of that I know what Parkinson symptoms feel like and severe akathesia(which is not what you desire when you are severely suicidal).

        I had a email exchange with Peter Gøetzche and unfortunately he didn’t know of any Danish psychiatrists that recognize PSSD. So I’ve given up looking for any. Since there is no known reliable treatment anyway it’s a bit pointless, but it’s rather untheraputic to have the symptoms that make you suicidal and ruined your life by a drug that was supposed to help your depression, dismissed as unreal and a delusion.

        I hope psychiatry can rapidly move away from using SSRI’s and SNRI’s as 1st or 2nd line of treatment for depression and anxiety and something better can be developed for those who seek medication.

        Best Alexander.

        • Doesn’t need to be a psychiatrist or urologist. You will likely get better support from a Family Doctor – Primary Care Doctor and there likely is one in your area who will listen to you, support you and possibly even agree with you

          D

  5. People like me have been suffering from pssd for maybe 7 or more years allready and we really need a cure (7 – 8years since pssd, describes what has happened to me, and i also have brain fog and anhedonia)

    Forgive for asking but, now when the rxisk price has reached its goal i i wonder if you at rxisk will finally reach out to major media about iatrogenic damages/pssd/rxisk’s mission. Recognition is as you have stated, one of the most important things needed for progress toward a pssd cure. I wondered why you have not allready, is it because you are afraid people (who will realize they have it) will suffer from knowing their poor prognosis (permanent alteration), or that doctors wont believe in the condition? Because having a crowd (sufferer! ) funded price as incentive for a cure should take care of both of these problems at least if pssd and rxisk recieves media attention so that people will actually care to work on it to give sufferers hope, surely there would be interest in giving real hope to pssd victims because if the problem cannot be hidden, it has to be solved otherwise pharma would lose hundreds of million dollars in profits. Also, i believe people should be warned about pssd since the people are in danger of pssd, including children and are overmedicated anyway.

    • WE have been reaching out to major media for nearly 10 years. Everything from Cosmopolitan to the New York Times, Guardian BBC etc. You’d have thought they’d be interested in Sex. Nope. They do not want to know. Its baffling.

      D

      • Getting you or someone a bit like you on Joe Rogan would be a great idea. Not just to raise a bit of a awareness about PSSD but about the most important issues in psychiatry in general and the problem with corruption in Drug regulators and the drug industry.

  6. Alexander, have you been brushed off even after you’ve shown them the EMA has recognized the condition? I was hoping that would make a difference.

    • Yes it didn’t make the slightest difference for me that it’s been recognized by EMA. It may make a difference for others. I know a Swedish PSSD sufferer who had it offcially recognized by his psychiatrist.

  7. It’s a shame there isn’t a doctor on the list for the UK, surely London has somebody!

    I don’t have PSSD, but when I had an extremely adverse reaction, I did experience it for a few weeks, I was lucky it went. But I wasn’t so lucky in other areas, such as with my eyes, hearing, muscles, cognition, and various other problems I now face daily because of the SSRI. I lost 2 years of work and It still keeps me awake at night, I still get upset over it, like others, I’ve never had any recognition or acknowledgment. I won’t list every symptom I went through, as I went through a lot, but it’s been 3 years and honestly, I just feel like, doctors have no idea at all, that anything even happened. There’s this feeling every day of injustice, and it really gets to me, imagine someone harmed you, and you could never face that person, they could never be brought to justice. Even surrounded by family, it’s a lonely place to be.

      • wow, you are up late Dr Healy,

        I’ve started to go private for my GP’s, hopefully, I can find someone who will believe me, or at least be open-minded enough to accept the possibility that Citalopram is what caused it. I kindled, so was fine on it for 8 years, had a 1-year gap, went back on and boom, life has never been the same. Akathisia was the worst symptom, but luckily it was short lived. Another Sleepless night. Whatever wrecked my muscles, it messed the ones at the back of my neck, it’s been like that 3 years now, and all the nerves in my neck I believe are damaged, which makes it uncomfortable to get to sleep, especially hard when combined with feeling upset about what happened. Ironically I’m not even anxious anymore, or depressed, just angry and upset.

      • Peter Gøtzsche has also complained about in his case being outright censured by media most times he tries to reach out or is featured in documentaries. Though he still manged to appear in swedish national television one time.

        Healy, judging by your lectures you know more about the pharmaceutical industrus role in the research than most, if you think that media financial ties to pharma is behind the neglect of coverage i
        Figure then that an idea would be if you were to systematically contact these and independent media as a kind of study, and then write an article about it (independently published/on independent media/podcasts) showing the effect of financial ties on dealing with the issues will probably generate more interest, because while reading about sex and iatrogenic damages may only be of interest to some of the readers of major media, the trustworthyness/biased coverage of these media should be of interest to all of them!
        I think media can only succesfully “lie by omission” if the lying tendencies are not publicly visible and it would make the story more interesting if they were, i belive.
        Also i figure that maybe then some of these media would then feel a need
        To redeem themselves/look better by actually covering pssd.
        I figure maybe such a study would not be all that much work to do if most of the media are that uninterested in the issue then you would not need to write as much if they wont allow you to.

        At any rate:
        I know you and rxisk has done more for pssd than anyone
        You have been heroes for us.
        And i am very grateful.

        However people still suffer from disability from pssd, and the public is still being damaged by ssri’s because they have not been warned and is given medications that they do not need, and people keep being mentally destroyed by drugs. And no one doctors included knows about this, they could have prevented this.

        So i feel, still, that when it comes to reaching out to the public you have not tried hard (or smartly?) enough.

    • Shaun I feel the same RE the daily sense of injustice, and I can empathise with you feeling alone in all of this.

      I have been suffering from PSSD for just over 13 years now, and I have had no acknowledgement, no understanding or empathy, and no help or support.

      Apart from my mum, my family doesn’t understand or believe about what has happened to me either; and whilst I was unable to work for a number of years while going through benzodiazepine withdrawal; my mum would occasionally get phone calls off one of my uncle’s, where he would complain about the fact that I wasn’t working; despite her telling him that I hadn’t been well.

      He even complained one time that he didn’t see why his taxes should be used to support me, when he felt I should be supporting myself.

      My mums side of the family are very judgemental, and I haven’t spoken to them for over 10 years (for a lot of different reasons which I wont go into here), but it still wasn’t nice being judged from afar.

      I would never bother to tell them about what has happened to me with the benzodiazepine withdrawal (or god forbid the PSSD), as they were very disbelieving and unsympathetic when I first started having health problems in my early 20’s.

      My dad didn’t really believe me either about how long the withdrawal from benzodiazepines can last, and would regularly complain I was using it “as an excuse”, not to get on with my life. He also told me that his doctor had expressed surprise that withdrawal could last as long as I had been suffering, and my dad implied regularly to me, that he found it hard to believe.

      But my sister is without a doubt the worst of the lot. She has been very judgemental and critical of me not working whilst I was going through benzodiazepine withdrawal, and has often made comments about how she thinks I am just lazy, and that I just need to “sort my life out”.

      I tried telling her a number of years ago about what I went through with the benzodiazepine withdrawal, but she didn’t seem particularly interested, and I remember her rudely changing the topic of conversation, before I could properly finish what I was saying.

      Near the beginning of this year she had a second child, and has been suffering from what seems to be post natal depression. Her GP has been trying to convince her to take antidepressants for many months now, and recently she told my mother, that she was going to get a prescription for them at her next doctors visit, and give them a go.

      She came around to get something from my mums house shortly after this (I am currently living with my mum), and I used it as an opportunity to try and warn her of the dangers of antidepressants, and I tried to explain to her that I had been left with long term side effects from SSRI’s that have never gone away (I didn’t mention or wasn’t specific about the PSSD, as she doesn’t know about it, and considering how unpleasant she has been towards me, it is not something I wanted to share with her).

      Her response was to walk out of the house when I was half way through trying to warn her, and she got angry at my mum for telling me that she was thinking of taking antidepressants.

      I sent her a follow up email, apologising for bringing up the subject out of the blue, saying that I passed no judgement on whether she took them or not, but that because of what had happened to me, I almost felt I had a duty to try and warn her.

      In the email I warned her about the possibility of developing PSSD (without mentioning I had it myself), and I also warned her about how other withdrawal symptoms can sometimes persist for years after you come off, and I also mentioned about the risk of akathisia and the risk of suicidal urges, and thoughts, on SSRI’s. I attached supporting evidence in my email, for all of the points I had made about SSRI’s. I got no reply.

      Last week my mum went around to help out with the baby, and mentioned to my sister that there might be a genetic risk with her taking antidepressants, because of some of the problems I have been through. My sister apparently got quite nasty, and cut her off before she could finish, and angrily told her that the doctors wouldn’t give her anything that could harm her, and that she knows of lots of people on SSRI’s, and that they are fine.

      My mum had also mentioned to her that if she took an antidepressant, there was a chance some of it might pass to her baby in the breast milk, and that this was something she should think about before taking them. Apparently she told my mum that she probably would take the antidepressants whilst breast feeding, as the doctor would have warned her, if it was a danger to breastfeed whilst being on them. So my nephew might possibly be exposed to SSRI’s, or another type of antidepressant, before his life has even had a chance to properly begin.

      So my well meaning attempt to warn my sister about antidepressants, did not go well.

      I am generally seen as the “black sheep” of my family, and all of my cousins have jobs, and work, have bought houses, have got married/ have a long term partner, and every single one of my cousins (on both sides of my family), and my sister, have had children.

      I am the only one out of all of my age group in my family, not to do any of these things, and the reason because of this is without a shadow of a doubt because of psychiatric drugs (PSSD and the long lasting benzodiazepine withdrawal). If it hadn’t have been for the long lasting benzodiazepine withdrawal, and the PSSD, I strongly feel I would have had a very different life indeed.

      I am the odd one out, and they are all cosy with one another, and generally look down there nose at me, and view the fact that I don’t work, or have a girlfriend etc, as “a problem”.

      It has been very difficult for me surviving through both benzodiazepine withdrawal, and PSSD, whilst having no empathy or understanding from either the medical profession, or my own family. In fact I think in a lot of ways the reaction I have had from my own family, has been worse than that from the medical profession, as it feels like a much more personal betrayal.

      I feel very alone and misunderstood, and my life is very hard!

  8. Lots of us have tried contacting people you would expect to want to help or at least get a story out of it but the response is next to nil. We have also tried t-shirts ; posters; leafletts etc These have mainly advertised the condition and Rxisk. What about a slightly different tack? making a social media poster naming all the drugs prescribed for different illnesses,(as well as ADs) eg thalidomide, etc which have caused deaths and ruined lives They have been mass prescribed – now ADs are top of the list with no cure for the harms they cause. Someone would be able to invent a striking poster?

  9. The Star, Sheffield
    @SheffieldStar
    ·
    26m
    One in five people who contract coronavirus are now believed to develop long-term symptoms, including brain fog, anxiety, depression, breathlessness and fatigue

    Many of the symptoms of long covid are likely to lead to prescriptions of ADs -People need to know the potential adverse effects Great that clinics have already been set up for them -( but not for PSSD) Will they be properly informed?

  10. In Thebmj This debate is still getting covered . It may be worth making a comment re what information is available to people using psychiatric medications . The adverse effects of using these drugs are well documented including PSSD. How can any interaction with vaccines be predicted when no trials have been carried out. Can people rely on the current methods of gathering evidence eg Drs should be including the fact that people have experienced adverse effects to medications when reporting adverse effects to the vaccines. How can individuals ensure this is recorded and reported. In fact There is no possibility of giving informed consent to the vaccines right now although people will take that on board and accept them of course.

    Vaccinating the UK against covid-19
    Re: Vaccinating the UK against covid-19, re ‘do we know anything about interactions with other drugs’
    Editorials
    Vaccinating the UK against covid-19
    BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4654 (Published 30 November 2020
    References
    1. Mahase E. Vaccinating the UK, ‘How was the first Covid vaccine approved? How will it be rolled out, and who will get it?
    BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4654 (Published 30 November 2020)

    Re: Vaccinating the UK against covid-19, re ‘do we know anything about interactions with other drugs’
    Dear Editor
    This series of comments on the many questions currently being raised about the vaccines being rolled out for protecting populations against Covid-19 related illness includes the query ‘Do we know anything about interactions with other drugs?’ [1] The response given is that ‘no interaction studies have been performed’, which is understandable in the light of the speed at which vaccine development and trials of their use has had to proceed, though such data will emerge in due course.
    References…….
    Barbara J Boucher
    medical practitioner [honorary professor]
    The Blizard Institute, Queen Mary University of London, London, UK
    London, E1 2AT UK

    Vaccinating the UK against covid-19: Response to Judith Neaves
    The number of people receiving a Covid-19 vaccination globally will soon far exceed the number of people who received the vaccines in clinical trials. Careful review of the medical records and subsequent health histories of these vaccine recipients will provide valuable information that can help guide professionals and patients about the merits and potential side effects of Covid-19 vaccination.

    10 December 2020
    Everyone is entitled to choose to receive a Covid-19 vaccine, but the law requires all risks first to be disclosed: including Professor Doshi’s and Paul Offit’s warnings.
    [1] https://www.gov.uk/government/publications/regulatory-approval-of-pfizer
    [2] https://www.bmj.com/about-bmj/editorial-staff/peter-doshiout interactions with other drugs?) 2020 12th December;371:427

  11. King’s College London
    KING’S MAIN SITERESEARCH PORTAL
    INTERNAL
    Research OutputsTheses.JournalsPublishers
    The Effect of Positively Framing Side-Effect Risk in Two Different Formats on Side-Effect Expectations, Informed Consent and Credibility: A Randomised Trial of 16- to 75-Year-Olds in England
    Contribution to journal › Article

    Rebecca K. Webster, G. James Rubin
    Journal Drug Safety
    Volume 43
    Issue number 10
    DOIs
    https://doi.org/10.1007/s40264-020-00959-8
    Accepted/In press 1 Jan 2020
    Published 1 Oct 2020

    King’s Authors
    G. James Rubin (Psychological Medicine, Psychological Medicine and Integrated Care Clinical Academic Group)
    Abstract
    Introduction: Reframing side-effect information in patient information leaflets (PILs) in terms of those who remain side-effect–free may reduce negative expectations and side-effects, although there are concerns this may impact informed consent. This study compared two versions of positively framed PILs with current practice to see which reduces side-effect expectations whilst maintaining informed consent and credibility. Methods: We commissioned Ipsos MORI to conduct an online survey of 16- to 75-year-olds in England. 1067 people completed the study and were randomised to receive a PIL for a hypothetical new antibiotic that either communicated side-effects following current practice (n = 356), used positive framing with natural frequencies (n = 356), or positive framing with percentages (n = 355). After reading the leaflet, participants completed measures of their side-effect expectations, absolute risk perceptions, and satisfaction and credibility of the leaflet. Results: Both positively framed PILs resulted in significantly lower side-effect expectations compared with the current PIL for all side-effects (ps 0.626). The positively framed PIL using natural frequencies produced more accurate risk perceptions than the same leaflet using percentages; but performed equally to the current PIL. There was no difference between the leaflets in terms of satisfaction with or credibility of the PILs. Conclusion: Positively framed PILs using natural frequencies significantly reduced side-effect expectations and provided the most accurate risk perceptions without impacting satisfaction or credibility. Replication is needed with patients prescribed new medication and those with lower educational status.

  12. There’s so many inknowns about the vaccines but at least we need to have as much info as possible before making a decision Questions need to answered before the jab goes in – and those giving the jabs need to know the answers – whether it’s ‘we don’t know’ or where to go for futher info. Lessons the public need to learn from those speaking out about SSRIs

    4.5 Interaction with other medicinal products and other forms of interaction
    No interaction studies have been performed.
    Fertility
    It is unknown whether COVID-19 mRNA Vaccine BNT162b2 has an impact on fertility.

  13. forgot to include the ref for above with loads of detailed info
    reg 174 information for uk healthcare professionals –

    • I agree Anon, but having such an unsupportive, and unsympathetic family, on top of the reaction I have experienced from the medical profession, has made living with PSSD even harder than what it would have been; and at times it has been very hard.

      I feel very betrayed and misunderstood, by so many different people.

      My mother is the only person in my family who understands, and believes, what has happened to me; and once she is gone (she is 70 now), I feel I will be alone in this world, without any close family, and only a few online friends who understand what having PSSD is like.

      I feel very isolated and alone, and I feel I am facing a future once my mother is gone, that is likely to be even bleaker than my current reality, which is already very unpleasant, and difficult to live with.

      • Spruce just wanted to say that I’ve suffered from PSSD for 13 years as well and have had a somwhat similar life experience as you. Just wanted say that if you ever feel the need to talk with someone IRL over skype, the phone or some medium where you are anynomeus i’m always willing to chat with people who suffer from a similar condition. I sometime keep in touch with people who suffer from this condition and once in a while it’s good to chat with people who knows what its like and don’t have preconceived notions about it. Unfortunately I dont have a solution or a cure, I’ve made a lot of mistakes down the road, so I certainly no what not to do, but I don’t mind talking just for the sake of takling.

        Best Alexander

        • Thanks Alex.

          Funnily enough, you already know me from the PSSD Facebook group; you just didn’t realise because I go under the name of Spruce on here.

          I will message you later.

  14. I think alot of the problems people experience in their various social groups of all types stem from the miserable as sin idiom which is a nonsense idiom. Someone who is miserable doesn’t make them a bad person, if the causes behind someone’s misery are due to a medical iatrogenically created problem it is hardly fair to demonise that person who has become miserable through no fault of their own. They trusted a doctor who in turn trusted in ssri medicines. Being cast out from a social group simply for being miserable makes things worse for a person who has any illness, it isn’t much fun at all, being trapped in a.’relationship’ with an insufferably self righteous person who is incapable of listening and thinking critically is more of a hindrance than a help. Alot of relationship dysfunction and conflict can arise from the ssri related conditions, for myself I’d rather stay out of such scenarios, I avoid the hostile social stuff like the plague and mind my own business. I’m quite happy to be in my own company alot of the time I don’t need more brain damage thanks.

  15. From a site titled Rare Disease Day – Is it more rare for women – or harder to speak about it

    The antidepressant that stole my sexuality and never gave it back to me.
    By Lora, Post-SSRI Sexual Dysfunction (PSSD), Italy, November 28, 2020

    Post-SSRI Sexual Dysfunction (PSSD)
    My name is Lora; the story I tell begins in 2013, when I was 25 years old and, suffering from a severe depression caused by my sense of loneliness, dysmorphophobia and social anxiety, I was prescribed a very common antidepressant of the SSRI class.

    From the very first weeks of taking it I noticed very well that “down there” everything had calmed down: my sexuality, which had always been very lively, became completely silent. I noticed it well even without having a relationship; to tell the truth, I had never had one, even though it was my greatest desire, that of living intimacy and passion with a boy. I noticed it well because I was used to masturbate frequently, practically since the early years of my puberty, a habit that disappeared completely when I started the antidepressant. I didn’t even want to think about it anymore. I knew that they were side effects of citalopram.

    Before taking it, I had already inquired a little bit on the internet, finding that some sexual difficulties such as “a decreased libido and difficulty in reaching orgasm affected about 1 in 10 people taking SSRI or SNRI antidepressants” and were reversible effects after discontinuation. It didn’t seem too worrying, and in a few weeks the antidepressant did for me what it should have done: I recovered from depression, I felt less uncomfortable, so much so that I started to make some friends, to have new experiences with them, to work.

    So I continued the therapy for 10 months, during which time I didn’t touch myself and I didn’t have a single orgasm. Towards the end of that period, however, I met a boy with whom I had the first contacts and sexual experiences. I still remember the night when, on the way home, I was happy because for so long I had thought that my shyness would never allow it and it had just happened. I had explained to that guy that I was suffering from side effects that made my genitals unresponsive, but that I was happy anyway to have those experiences and I would have started to reduce the drug to get it off completely, so that I would finally have sex with my full sexuality. And so I did, agreeing with the psychiatrist.

    It was only 10 drops, which I climbed in about two weeks. As the drops diminished and things didn’t change at all, my first worries appeared. But I waited until the last drop had been removed before I became frightened. I searched on the internet: “how long after the suspension of citalopram does libido return?” There was talk of only a few days at most. My psychiatrist said that with just a few drops, any sexual side effects would already be gone.

    Well, it wasn’t like that for me. I tried to masturbate in front of pornographic videos as it had always been easy to do: no genital arousal response, no pleasure in touch and stimulation. With this evidence on my skin, I couldn’t accept the psychiatrist’s response, and I researched further on the internet, until I found that some people reported persistent sexual dysfunction after discontinuation of SSRIs or SNRIs, Post-SSRI Sexual Dysfunction (PSSD) that “can last for years or be permanent”. On the “PSSD sufferers” forums, however, there were many testimonies from people who complained about the same problem year after year, with no noticeable improvement or recovery.

    I took the literature articles to my psychiatrist, after he replied to my alarmed words that it was absolutely not possible and that I could find everything on the internet, even people “abducted by aliens”. He read those articles and admitted that he was not aware of them and that “it was interesting”. He consulted with his colleagues and none of them knew about it. There were case reports of persistent genital anaesthesia after suspension of SSRIs since 2006, and in 2014 none of them knew about the syndrome that can affect apparently a small minority of consumers.

    There was no uglier trauma in my life than losing the sexuality that had grown up with me, that had always shaped my dreams and with which I thought I would grow up. This not only condemned me to live with what I consider a gruesome mutilation, it not only gave me further and worse psychic suffering, it deprived me of my passion, my eroticism and forced me to give up my deepest desires and meanings.

    In my case, and for this reason I should consider myself “lucky”, romantic emotions and sexual desire have not been completely erased: it may seem strange but, although my clitoris has been “out of service” for over 7 years, and I do not feel sexual arousal and genital pleasure, I am still mentally inclined to all this and I get a bit of satisfaction at least mentally from sexual intercourse. The autoeroticism that used to keep me company and was compforting even in the darkest periods, has become almost impossible and senseless: I would like to feel the natural sensations I remember and sometimes I still manage to get an orgasm, but it is mechanical and without a pleasure worthy of the name, and I reach it after a “forced” stimulation. It is not worth it.

    I was saying that I might consider myself lucky in some ways because, being part of a wider community of people suffering from PSSD and Post-SSRI syndrome, I know very well that not a few of them have, along with the symptoms I have, also symptoms of anhedonia and severe emotional numbness, which also includes a total disappearance of sexual desire. PSSD has broken the relationships of several people I know and pushed several people to suicide.

    In 2014 it was the first time I tried to end my life; I promised myself that “I would never accept to live with such a condition”. The years have passed, and I am living with it. I am sadly accepting it. I am keeping up with the recognition, the research and I hope that a valid cure for us will come up “in time”. I try to be useful and do my part in this; it could become a sort of new meaning in my life.

    In 2019, the European Medicines Agency collected case reports, reviews and spontaneous reports on PSSD and then asked pharmaceutical companies to update the indications of SSRI and SNRI drugs with the (in my opinion, a bit evasive) warning that “in some cases sexual dysfunction persists after treatment is discontinued”.

    This happened thanks to those, patients and specialists, who did not stand still and did not remain silent. It is a step forward so that those who prescribe and those who take these drugs can make (albeit still with enormous limitations, since the reactions are subjective and unpredictable) a better balance on the pros and cons in their case.

    If you suffer from this, do not stay hidden. I would like to thank the specialists who are working with scientific interest and courage and heart on this issue. Let us help them to help us.

  16. Dr. Healey why not request to go on the Joe Rogan podcast and discuss the harms of these popular drugs? His platform might be the greatest opportunity to spread awareness about pssd and other conditions induced by these drugs. Awareness and faith in finding relief someday, from sexual and cognitive side effects of pssd, is the only thing that gives me the fight to live through this hell everyday. Thanks for your support and advocacy.

    • Daniel

      My impression is Joe R reaches out to people – someone like you needs to interest him in the idea of approaching me. If he does, I’ll say yes

      David

  17. – Gloria started taking fluoxetine when she was diagnosed with a major depressive episode in 2017. “Within a month, I completely lost the ability to orgasm and sexual desire also dropped precipitously. I simply didn’t feel anything during intercourse. Fluoxetine is an SSRI, a selective serotonin reuptake inhibitor, the most common class of antidepressants, which includes such well-known names as Prozac, Daparox and Zoloft. It is a class of drugs that can alter the concentration of certain neurotransmitters responsible for mood, particularly serotonin. They are so effective that one of the first SSRIs, Prozac, has been around since 1986. As we all know, however, there is no cure without side effects and the pharmacological path is a complex and uphill road of trial and error, adjustments and compromises. Gloria’s sex life returned to normal a year after the end of her treatment.

    Like Gloria, I started taking an SSRI about four years ago. As I was not in a stable relationship, I did not notice the effects on my sexuality at first, or perhaps I was so relieved to feel better that not being able to reach orgasm did not seem to be the first problem. Depression itself is the enemy of libido, so the drug-related drop in desire is not always immediately recognisable. As time went on, however, and the situation did not improve (while other side effects disappeared after the first few weeks), I began to worry, because an unsatisfactory sex life does not help you feel good, but it was only when I talked to friends and acquaintances that I realised the extent of the phenomenon.

    In my case, the effects were limited to difficulty in reaching orgasm (which, of course, is very frustrating – especially as the problem also relates to masturbation), but I was still able to experience desire and pleasure. Other people I spoke to, however, considered their sex life to be completely compromised: some had stopped treatment early and in some cases the problem had not even been resolved: even after years without SSRIs, sexual dysfunction remained.

    Even after years without SSRIs, the sexual dysfunction remained. As a 2017 study explains, side effects of this kind are not only very common, but can also last beyond the duration of treatment. Specifically, these include loss of libido, vaginal dryness, painful intercourse, erectile dysfunction, anhedonia (inability to feel pleasure) and anorgasmia. But since this is a very delicate and personal area – and considering that the effects of the drugs interact with those caused by the disorder itself – it is important to say that it works differently for everyone, and these are just the most common side effects. For example, Luca, 33 years old, explains: “For at least a month I have had zero libido, but with sudden highs, but ‘sad’ and nervous. To this is added a very strong emotional detachment from others, which is by far the worst thing.

    It is difficult to determine exactly how many people suffer from one or more of these disorders, because patients taking antidepressants rarely tell their doctors explicitly that they have sexual problems. Research on this topic has used a wide variety of data collection methods, so the resulting picture is still fragmentary and not always open to interpretation. But one thing is clear: the use of antidepressants – and psychotropic drugs in general – is on the increase. In 2017, 6% of the population in Italy used them, but with the pandemic, the situation has worsened. It is therefore more important than ever to talk openly about the side effects of these drugs, because if mental illness and psychotropic drugs are still taboo, the consequences on the sexual sphere are even more so.

    “When I was diagnosed with an acute depressive episode in March, my first fear, having studied pharmacology at university and knowing the contraindications of psychotropic drugs, was that I would no longer be able to experience pleasure,” says Chiara, “And it was curious, because one of the symptoms of the depressive episode was precisely the absence of pleasure, I no longer wanted to have sex with anyone, including my partner. My ‘good fortune’ within my bad fortune was that the psychiatrist prescribed an antidepressant – one of the few – which does not affect the sexual sphere. Unfortunately, however, it is not a drug that is well suited to every type of depression. I also remember that two years ago I had a relationship of a few months with a guy who initially did not tell me he was taking psychotropic drugs, so the first times we slept together we had to face a series of discomforts and embarrassments. On the one hand I attributed his delayed orgasm to a lack of involvement with me, the fact that I did not stimulate him enough, etc., on the other hand he was very discouraged and felt at fault. Talking about it helped us a lot: his ‘long times’ started to weigh less and less on me and my understanding relaxed him”.

    Chiara’s experience makes it clear that the solution to this kind of discomfort cannot be one-size-fits-all and that sometimes, rather than a solution, it is a process of progressive improvement. While for some people a change in dosage or medication may be decisive, for others who suffer from a different type of depression or who react differently to medication, these solutions are inapplicable. Psychiatric treatment is never a clear-cut pathway. The use of medication must be accompanied by continuous monitoring and adjustment of treatment, both to achieve the best possible effect and to maintain it. From this point of view, sexual dysfunctions must unfortunately also be taken into account. Even in cases where it is not possible to change the treatment or correct the dosage, the situation can improve a lot, if not resolve itself.

    In my case, for example, the body has gradually adjusted and the side effects have subsided. Reaching orgasm remains a longer process than before, but the fact that it is less automatic has led me to give more importance to context, situation and foreplay. Also to focus more on my own pleasure. Then, of course, this is my experience and it works differently for everyone. The mechanisms underlying our mental health are still poorly understood and there is still no good, unique way to overcome depression and maintain an active, balanced libido.

    One ploy that some antidepressant users use is to take a programmed withdrawal of the drug for a few days to get a respite from the side effects. This method can work – although not for all types of drugs – but at the cost of experiencing not insignificant withdrawal symptoms such as vomiting, sensory changes, emotional imbalances and many other unpleasant effects that always accompany the abrupt discontinuation of certain psychotropic drugs. It is therefore always recommended to seek advice from your psychiatrist or doctor.

    Generally, talking to a specialist is the most obvious but also the most important advice. And it’s not as trivial as it sounds: female pleasure is still given too little consideration, and this means that women in particular are often inclined to come to terms with these side effects and consider them a normal price to pay for effective treatment, which doesn’t have to be the case. Accepting a choice between one’s mental health and a healthy sex life is not the right way to take care of oneself.

    Translated: https://thevision.com/scienza/antidepressivi-libido/

  18. How much longer will people be waiting for justice in UK and elsewhere where cash for lawers is not available – untold thousands of citizens are being prescribed psychiatric drugs without being warned of potential harms
    NPR logo
    NATIONAL
    Justice Department Sues Walmart, Alleging It Illegally Dispensed Opioids
    December 22, 20203:00 PM ET
    Laurel Wamsley at NPR headquarters in Washington, D.C., November 7, 2018. (photo by Allison Shelley)
    LAUREL WAMSLEY
    The Justice Department filed a lawsuit Tuesday against Walmart, alleging that the company’s unlawful actions resulted in hundreds of thousands of violations of the Controlled Substances Act.
    Charles Krupa/AP
    Updated at 3:40 p.m. ET
    The Justice Department filed a lawsuit against Walmart on Tuesday, alleging that the retail giant unlawfully dispensed controlled substances from pharmacies it operated nationwide.

    The government says that, between the actions of the company’s pharmacies and its distribution centers, Walmart helped to fuel America’s ongoing opioid crisis. Damages in the civil case could total in the billions of dollars, the Justice Department said.

    “As one of the largest pharmacy chains and wholesale drug distributors in the country, Walmart had the responsibility and the means to help prevent the diversion of prescription opioids,” Jeffrey Bossert Clark, acting assistant attorney general of the Civil Division, said in a statement.

    Walmart Will Implement New Opioid Prescription Limits By End Of Summer
    THE TWO-WAY
    Walmart Will Implement New Opioid Prescription Limits By End Of Summer
    “Instead, for years, it did the opposite — filling thousands of invalid prescriptions at its pharmacies and failing to report suspicious orders of opioids and other drugs placed by those pharmacies,” he added. “This unlawful conduct contributed to the epidemic of opioid abuse throughout the United States. Today’s filing represents an important step in the effort to hold Walmart accountable for such conduct.”

    If the retailer is found liable in the case, it could face civil penalties of up to $67,627 for each unlawful prescription filled and $15,691 for each suspicious order not reported.

    The case, which the department says was the result of a multi-year investigation, was filed in federal court in Delaware.

    The complaint alleges that Walmart violated the Controlled Substances Act in multiple ways, as the operator of both pharmacies and wholesale drug distribution centers.

    At its pharmacies, Walmart is alleged to have knowingly filled thousands of controlled substance prescriptions that were not issued for legitimate medical purposes. And at its distribution centers, the government says Walmart received hundreds of thousands of suspicious orders that it failed to report to the Drug Enforcement Administration, as required.

    In a statement on Tuesday, Walmart defended itself against the allegations – and said the DEA itself was to blame.

    “The Justice Department’s investigation is tainted by historical ethics violations, and this lawsuit invents a legal theory that unlawfully forces pharmacists to come between patients and their doctors, and is riddled with factual inaccuracies and cherry-picked documents taken out of context. Blaming pharmacists for not second-guessing the very doctors DEA approved to prescribe opioids is a transparent attempt to shift blame from DEA’s well-documented failures in keeping bad doctors from prescribing opioids in the first place,” it said.

    Cherokee Nation Sues Wal-Mart, CVS, Walgreens Over Tribal Opioid Crisis
    CODE SWITCH
    Cherokee Nation Sues Wal-Mart, CVS, Walgreens Over Tribal Opioid Crisis
    Walmart says it had “always empowered” pharmacists to refuse to fill problematic opioids prescriptions, which it said they did hundreds of thousands of times. The company says it sent thousands of investigative leads to the DEA, and blocked thousands of questionable doctors from having their opioid prescriptions filled at its pharmacies.

    The retailer, which is headquartered in Bentonville, Ark., had a total revenue last year of $524 billion.

    Robert Higdon Jr., U.S. Attorney for the Eastern District of North Carolina, said in a statement that his own district has been devastated by addiction and abuse – and that Walmart only made things worse.

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    “For example, our office prosecuted a physician for illegal opioid distribution,” Higdon said. “A jury convicted him just last year, and he is currently serving a twenty-year prison sentence. As it turns out, that physician expressly directed patients to Walmart to have their opioid prescriptions filled. Walmart’s own pharmacists reported concerns about the doctor up the corporate chain, but for years, Walmart did nothing—except continue to dispense thousands of opioid pills.”

    In October, under the threat of the now-announced lawsuit, Walmart sued the Justice Department and the DEA, asking a federal court to clarify the roles and responsibilities of pharmacists and pharmacies under the Controlled Substances Act. The case is pending in federal court in the Eastern District of Texas.

  19. Hello Spruce,
    I am so sorry to acknowledge your circumstances and challenges, surrounding unsympathetic and unsupportive family members.
    I hope, given time, those who have misunderstood you and have let you down, will come around.
    I am so glad you have a compassionate mother who understands you well.
    I sympathise with what you are going through and hope one day you will receive all the support and acknowledgement, you and many others sufferers deserve.

    • Thanks anon, and I hope you are right, that one day the rest of my family will come around to understanding and believing, about the long term struggles I have suffered through because of prescription drugs; and start to view me as someone who has been through something very difficult, and long lasting, and who is worthy of empathy and compassion; and not just someone who is lazy, and who just needs to “sort their life out”.

      As I have mentioned before, the response I have had from the majority of my family has made living with PSSD, and going through benzodiazepine withdrawal, a lot more difficult than it needed to be; and in a lot of ways was more unpleasant than the reaction I had from the medical profession (which was also mostly very bad).

  20. Does anyone know, have contacts with Alistair Campbell.?Former Labour Spin Dr. He is quite an advocate of MH. He has written books and made TV programmes about his own struggles with depression, he also takes anti-depressants. Now there’s the rub, Alistair Campbell would probably never admit publically to any adverse side affects, especially Sexual dysfunction. Though a couple of female celebs have admitted lacking libido on ADs but they seem to think this is acceptable as Anti-depressants save lives! I know many women, and a few men who are ‘Stuck’ on depression pills totally having to accept no sex life is the price to pay…

  21. I understand and appreciate your dilemma Spruce, all too well!
    It comes with the territory.
    Another condescending, patronising, humiliating and derogatory attitude/ responses professionals and others love to dish out, are:
    ‘You have psychological issues or mental problems!’
    An excellent cop-out to not accept any accountability or responsibility for the harm they caused you or their immature behaviour.
    Put downs are part of their repertoire.
    They love to defame your mental integrity, at all costs, so that it gives them a sense of power and incredible leverage over the harm and mental distress they cause you.
    Some people, like I said, Spruce:
    Have no heart, soul, compassion or empathy!

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