RxISK Prize: How you can help

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September 18, 2017 | 84 Comments

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  1. In terms of the greatest need, people needing to know about it:

    1. Can somebody make a banner about the $100,000 Prize for the cure for PSSD that I can put on my blog? I guess it may be useful for the whole rest of the internet and blogs out there too?

    2. I always planned on running this marathon, I may make it a series of marathons or events. I’m going to call it ‘run against castration’. I could wear a shirt that says ‘run against castration’ on the front and ‘psychiatric drugs should be used on peadophiles, not children’ with ‘rxisk.org’ at the bottom.

    I haven’t come out to people at work yet or family and friends fully either but I have already been rare and weird by waiving my identity, I guess I have already done half the work.

    These are my 2 ideas. What do you think?

    • Daryl

      It needs all the energy and all the ideas people can think of. In terms of coming out the AIDS community in the 1980s showed the way and we may need to get in touch with people from there who can tell us what works and what doesn’t.

      David

      • The common denominator/s AIDS in the 1980’s and PSSD now?

        Stigma, medical denial of a rapidly growing problem,
        medical fear of marginalised groups, profound professional (medical establishment) discomfort with issues relating to sexually transmitted diseases then – (PSSD now – iatrogenic destruction of human sexuality).

        How was progress made against seemingly overwhelming rejection and denial surrounding AIDS?

        Media and charity counter-campaigns, enhanced by the courage of high profile individuals broadcasting the realities of societal and medical rejection, contempt and ignorance of terrible suffering.

        The commitment and courage of a visionary cabinet minister (Norman Fowler) who achieved ring-fenced funding and political commitment to alleviate this suffering.
        He was supported by a similarly courageous and scientifically
        fastidious Chief Medical Officer: – Sir Donald Acheson.

        Educating new medical professionals during the early stages of their postgraduate training: –

        The most powerful and enduring opportunity to advance medical knowledge, skills and awareness of AIDS at that time was via a full time, AIDS/ STD SHO training post for future G.P.s

        These open minded and often gifted young physicians worked with patients still well enough to attend our clinic,
        and attended our wards to care for those with potentially fatal opportunistic infections as their immune systems failed.
        They were also hands-on junior doctors for those whom we were doing our best to provide bespoke terminal care.

        These outstanding junior doctors then went into General Practice with more knowledge skills and awareness of AIDS and STDs than many hospital consultants in other fields at that time.

        Those of us on call 24 -7 as receiving physicians for AIDS patients out-with major centres had little difficulty in appreciating that our patients often new more about AIDS than their physicians.
        Hence we were eager and able to learn from them.

        We had high profile celebrities with the courage to reveal their diagnoses, risking and receiving vile and base prejudice.
        They began to properly educate the public and the professions.

        There was a powerful charity and lobby group in the Terence Higgins Trust who worked with great success.

        Above all we had the invaluable gift of the care, compassion and charisma of Princess Diana visiting the emerging AIDS wards and uplifting the weary spirits of our patients and delaying burn-out in their (also stigmatised) carers.

        Eventually, we were able to treat effectively with antiviral drugs which were stunningly effective and for which there were accurate biomarkers of therapeutic success.
        We were made aware of serious adverse drug effects by the manufacturers.

        (So successful and effective were these antiviral drugs that I naively and to my profound regret was later to believe that psychotropics would be equally specific, effective and prescribed with due diligence, caution, explanation and concern for avoidance of toxicity. What a fantasy).

        Many of the above AIDS assets and experiences seem potentially transferable to the current and brilliant proposal of The $100,000 Dollar Award designed to resolve the enormous suffering of PSSD – (currently still in the stages of denial by those who should be dedicated to its prevention and alleviation).

        It is hard to imagine that major celebrities, experienced politicians, and doctors themselves do not have amongst their ranks, colleagues whose lives have been devastated by psychotropic drug toxicities in general and PSSD in particular.

        I sincerely hope that publicity around this prize may afford those with such power and position insight into what has caused their suffering and that it will motivate them to speak out and campaign as did our AIDS patients.

        If anything can help over a medium to long term, I would advocate that every psychiatrist who has the wisdom, integrity and courage to speak out about psychotropic drug toxicity – (and who endeavours to protect their patients before their wallets) – should be training our future general practitioners during full-time / part time equivalent, Vocational Training Scheme appointments as part of the VTS – GP Training rotations.

        Then as new G.Ps – (properly educated rather than indoctrinated during psychiatric training) – they will believe, understand and accept, when their patients describe the misery of PSSD to them, although they are now unlikely to have prescribed the drugs that caused it?

        Main stream psychiatry, in financial collaboration with pharmaceutical marketing directors have long publicised pseudo-epidemics of dubious disorders.

        PSSD is real, iatrogenic, preventable and desperately needs to become reversible.
        Clearly those writing on this blog will use all the innovation and inspiration we can muster in order to maximise the marketing potential now available to us.

  2. In my opinion, the most reliable person that can write to Elon Musk or other famous people in order to ask them money, help, ideas, to speak about the problem is you Dr. Healy. I’m pretty sure nobody here is more reliable, famous and with more chance to be heard then you.

    I tried to write to my country’s drug Agency and government but noone answered me.

    • Alex

      I will certainly write to anyone who comes into the frame – but I need names and routes of access. I have a day job in addition to all this so I need people like you to make contacts – but also to think about writing yourself. We will set up a draft letter soon which you can modify and translate if the person is not English speaking – and point them to the RxISK pages etc We may have to approach 100 people to get 1 – so this can’t all be me

      David

      • David the regulatory body for acupuncture is British Acupuncture Council 63 Jeddo Rd London W129HQ tel. 02087350400 there is a web form online to leave a message. I think the contact needs to be you as someone with professional status – I would just be fobbed off if I used the form . I am being more careful about attaching the blog every time as it may be scaring the horses so a letter as you have suggested would be really useful
        They are also on social media for discussion so anyone could use that.
        There is a tag for ‘professionals’ to use and a tag for ‘research’ They are piloting a trial for people with anxiety presently It looks promising.

      • There are a lot of people who could and would do help. Elon is one of them, Bill & Melinda Gates Foundation too.

        The main problem is, as David said, names and routes of access. The information must be delivered to the right person inside Elon or Bill foundations. I have a feeling that trying to reach them by standard routes will be useless, maybe a coordinated action could get the attention but… what we really need is “better” routes of access…

        Some months ago I tried to contact a LOT of “top researchers”, and ONLY ONE(a pretty famous one btw) answered to me, he acknowledged the possibility of something like pssd happening, but its not his area and he didnt knew of someone who could help.

        People inside of the universities should known about the prize.

        • Blaze

          If you could send the contact details of the researcher who answered, perhaps if he knew there was a Prize he might spread the word.

          David

    • I do. I always have. Saying it seems permanent has been criticized but there is a lot of evidence it is not permanent damage which means it will only be permanent if we stop looking

      D

    • Ruth

      If we get an answer for PSSD, we will have an answer for enduring withdrawal problems or be a long way down the road to finding one. The enduring aspect to the problems is what they have in common and this is what we are looking for an answer to.

      D

  3. Do you think other adverse events like me and others are suffering years later are permanent David ? Or with time does everyone turn to baseline I’m five years out don’t take any other drugs/medication for five years still not right and someone posted the other day on here saying there still symptomatic ten years off Seroxat.

    • At the moment for a large number of people they are pretty permanent – although there can be windows of fleeting improvement. But I think we can find an answer that will turn this around – and its the fleeting moments that show a cure is possible

      D

  4. What about sending out a letter about PSSD to every GP surgery and Pharmacy in the UK over say a 5 year period. Do you think this could be done? Or is this unrealistic?

    This could speed up the process of mapping doctors that listen.

    Also once your template letter is done Dr Healy, I was wondering if you could send it to two doctors surgeries from where I live in the UK, and maybe speak to them confirming that PSSD is real. I have worked very hard over many years to get the GP’s at these two doctors surgeries to take me seriously, with little success.

    Despite this there were two doctors at these surgeries, that while not entirely believing me, were slightly opened minded about it, and I got the impression that if they had a bit of input from a well known doctor who was speaking out about this, that they could be persuaded to take it seriously.

    I am in a bit of an awkward situation at the moment. I have had to go abroad for an extended period of time to care for my father, who unfortunately passed away in July. I will be staying abroad until early 2018 probably, as there is a lot to get through in regards to dealing with a property my dad left.

    When I return to the UK I am very interested in the idea of sending out an alert type letter to GP surgeries and pharmacies. It is an idea I have thought about for a few years now. I know a few people in the “PSSD world” who might be interested in helping with this. Over time if more people got involved, we could reach a lot of doctors this way.

    What do you reckon Dr Healy?

    • I think we need to tackle the professional bodies – if they don’t agree to send out a letter a lot of the rank and file will just say that their professional body doesn’t endorse this. They will also ask – what the hell is RxISK that I should pay any heed to it.

      This is where $100,000 can play a part – we have 100,000 reasons why you should heed us.

      D

      • I have had a reply from a psychiatrist in USA who is very critical of over use of meds yet her response was not to read and consider the campaign but tell me ‘I know of David Healy – he is a marginalised psychiatrist within the profession’. That’s another obstacle ie the campaign against David by people in regulatory organisations such as coll of psychs. Sometimes the public gets ahead of the game though so a constant drip of alerts gets the message across and it couldn’t get far without him. She was unaware or just didn’t dare to admit the groundswell of concern either in USA or UK The internet is invaluable but so is the use of leaflets and posters which anybody can make – not every one finds blogs or uses the net – – it is easy to make one maybe by using Davids letter forthcoming, try to scrounge photocopying at work or college and copy a lot or as many as can be afforded in a public library and circulate them everywhere on message boards waiting rooms etc – cost 5p/10p a copy – add at the bottom please re copy and circulate thanks. A few will . By the way Are psychiatrists obliged to be governed by eg college of psychiatrists which is after all a charity?

  5. Also another idea, which might not be realistic, but I will ask anyway.

    What about asking the 300 or so people who have reported PSSD to Rxisk, whether they are interested in taking legal action about PSSD. Then if we get enough people interested, say 100 out of the 300, we all collectively approach some law firms until we find one who will take our case on a no win no fee.

    Then we create a class action and try to sue the drug companies that caused this to us. If it fails then at least a lot of publicity should be caused by the case, and if it succeeds, then even better.

    I want justice as well as recovery.

    • Legal cases generate almost no publicity these days. Pharma have too much control over the media. And a legal case will take a decade. Do you want to wait that long?

      D

  6. No i dont want to wait ten years.

    Do you reckon there will still be an opportunity to sue in ten years time though?

    Also do you still think its worth me sending the Rxisk reports into the two doctors surgeries to try to convince them that PSSD is real?

    • Spruce

      Impossible to sue in the UK anyway. At the moment, if the Prize works we may have something Pharma wants – so not a good idea to end up on opposite sides of a Wall too quickly.

      Re giving the reports or the blog posts to your doctors – everything is worth doing. They might be interested and might donate. If they are hostile let us know. We need people to try lots of different things out and see what gets traction.

      David

      • The UK is well and truly stuck back in the dark ages, surely in this modern day and age people can at least get some kind of recognition for the damage done to them by psychiatric medication. Its more than terrible that records for example can not be corrected for fear of what exactly? Like you said Dr Healy you cant sue in this country so what is it they afraid of then?

        They would rather your life was permanently damaged than admit they got it wrong.

        • Anne-Marie – your last sentence says it all. It’s not only true in relation to custodial sentences is it – it’s true from the first prescription you were ever given for these so called ‘medications’. I guess that’s the reason for not stopping and listening to the patient for a glimmer of exactly what’s going on. If only they could all see situations from our perspective for a change and save thousands of pounds to the country for each individual case. I’m afraid that the majority of them are like a species apart from reality. No-one knows better than David of the battle to get them to accept the possibility of ‘a different way’.

  7. Ok, i understand the need to be diplomatic, if the drug companies could have a role in finding the solution.

    I just feel the people responsible for all this damage should be held accountable at some point, even if it takes a long time.

    You would feel the same if you had lived with PSSD for almost 10 years.

    When you say the professional bodies, do you mean the MHRA and FDA?

    If so do you think they are really likely to listen? You know they are unofficially influenced by the drug companies, with a lot of their employees having a conflict of interest, and some being ex employees of the drug companies.

    What makes you think they can be persuaded to listen and act now, when they haven’t before?

    • Spruce

      The people to hold responsible are the people who having grounds to know there was a problem turned a blind eye. This may not have applied to drug companies at least at the time of launch. But arguably it does apply to the professional grouping of people who make a living out of our misery but turn a blind eye to the misery they may be causing.

      Professional bodies means groups of doctors primarily. There is almost no point getting in touch with MHRA or FDA or EMA – these are bureaucratic bodies whose greatest skills lie in not answering. Its companies that change the labels on drug and doctors who can force them to.

      David

  8. Hi Dr Healy, so glad to see that a professional is studying this and trying to find a cure.
    You said ‘a lot of evidence it is not permanent damage’ in one of your comments and that gave me great hope.
    I was beyond depressed thinking that I would be like this for the rest of my days, as I’m only 24 and am rendered asexual.
    I may be giving too much info here, but I have not been properly aroused in almost 4 years (med free over 3 years now). I’m not angry with the doctors or anything, I forgive them because I dont think they realise what these pills do. I just want pre-SSRI me back.

    Thank you for the hope, I will try to donate when my student grant comes in!

    • L

      Even more than money we need people to spread the word. Students get such small grants these days I think you should hold on to it and leave it to others to donate money. What some of us who have money don’t know is how to spread the word particularly through new media. If you could spend some time looking at this for us and telling us how to do it or actually doing it that would be wonderful

      D

  9. A typical GP Surgery website with many links ..

    http://www.strachurmedical.com/

    A typical link for Patients..

    https://patient.info/health

    You tube videos, health links, health videos..

    What’s to stop a typical GP surgery

    *Supporting Research for Patients*

    with a video about PSSD and AD long term withdrawal effects dropped on to their sites

    It would show that doctors care, it would show they are up to date and it would also start a conversation ..

    This is where the grass shoots ..

    And, surely, if they declined it would show a worrying trend of disinterest…however, many surgeries might be up for it ..

    It’s hard to tell .. if we all asked our surgeries this would give us National Research

    My consultation with a refreshingly bright, friendly lady doctor yesterday gave me an interesting answer to my question when I asked her if I should come back to her in two weeks when she had received blood tests and another type of test.

    This surgery has approx. 8 gps running a rural outreach, most of whom are very approachable.

    Her answer was thus:

    “Yes, come back and see me by all means but all doctors visiting this practice are trained in your health problem and so you will receive exactly the same advice from each gp and so don’t worry if you can’t get to see me I have put all your details on the computer and they will all do exactly as I am doing.”

    Bit of a change here from when ‘all doctors are trained to give an identical response’ to our complaints about Seroxat’ and its many side effects sometimes over 15 years ago ..

    Baffling and astonishing multitudes of varying attitudes with psychotropic drugs where each individual doctor is different to the last .. but give them a clear cut and they seem to behave Extra Ordinarily Well .. Government Guidelines might as well not exist when a doctor works in isolation and doesn’t have a clue and really he should want to share RxISK Knowledge but nobody seems to want to do that and the how to do it remains as inexplicable as ever ..

    I would put a RxISK article about this in the Daily Mail by Jerome Burne…?… to test the water not only from people affected but to alert ALL BODIES to the importance of DO YOUR RESEARCH don’t just sit back and WAIT FOR THE BODIES like SW, WB, AF, JC, PK and all the others – when ridiculous people who spout more claptrap than we have ever seen about serious disabilities and long term damage and who insist on tweeting worldwide about their profound ignorance ..

    As DH says he has his day job and we also have our day job and we should do more; the very gorgeous and lovely senior partner in my newish practice might be open to stuff I would like to say to him .. I will have a conversation with him about all this soonish .. he always opens up to me about his workload and other peripheral topics which were not about why I was there .. so why not​?

    We seem to have developed a rapport .. when this guy jumped in to action with a few black marks on my body he got me down to his hospital on a Sunday and sprayed me with liquid nitrogen and they all dropped off .. forever grateful .. I like a doctor who jumps .. awesome ..

    The guy exuded energy .. in answer to my question as to why I had black marks…he said…I know its a Sunday morning…but its an age thing…

    When he hit the canister of liquid nitrogen trigger and sprayed himself…he went all female and said ow…I said lying there all exposed…its an age thing…the nurse almost wet herself…he said to be fair he didn’t see it coming…hilarious..they get all upset so easily ..

    • Blimey Annie One Dr is all you have at your surgery, you don’t want to be falling out with him do you otherwise its a long trip to Glasgow. I had to laugh at the health screening considering you would have to be fit to get to that remote surgery in the first place.

      Fighting for the truth about the drug is hard enough without being in a one man band surgery.

    • Might Peter Hitchens be a good one to contact too Annie?
      I do feel that whatever ideas we as individuals have – such as leaflets , banners etc. should be passed to the RxISK team beforehand, if their name/website is included in the said poster etc. In this way, we can be sure that whatever we are doing is in line with the will of the group. It is all too easy, in the heat of the moment, to add bits that could work against us. Words can be so influential. After all, the good name of RxISK is so important in all of this – we need success without any unintended hiccups surely?

  10. Went back to the neurologist today ( different neurologist same department) about my continued horrendous symptoms I’ve had for five years off Seroxat. To be fair don’t get brain zaps much no more at all but had these terrible for first two years intermittently for four years neurologist tried to convince me today brain zaps are migraines and you wouldn’t have symptoms after stopping Seroxat after a couple off months. Unbelievable I’ve had migraines before I took pills and they don’t cause you to grab your headboard at night while a bolt shoots through your head, followed by more through the night.
    I’m writing this because I can’t believe a neurologist doesn’t believe that discontinuation lasts more than a couple off months and that brain zaps are a different type off migraine (realy) and she had never had heard off brain zaps. I have the feeling she was not as experienced as the one I saw a year ago who also said migraines and didn’t want to override the previous ones opinion. Like pssd all these affects are completely denied and told there unheard off when you consult a medical professional how does anyone one get recognition? I told her she should do some research about long lived discontinuation effects off ssris and brain zaps which she gave me a funny look. What makes me laugh these doctors never listen to the patient because they think what do we know, us being the suffers more than them I say.Is it an ego doctor patient thing I think so I hope one day these symptoms pssd discontinuation syndrome brain zaps akathesia etc are more recognised by doctors which the majority haven’t got a clue and look as you as if you’ve just come from another planet and got off a spaceship when you explain what you’ve been going through.

  11. I take my hat off to you David and risk for what your trying to achieve without this site many would have nowhere to turn and the majority would end up on the polypharming rollercoaster.

  12. When you say groups of doctors, what do you mean exactly?

    Do you mean doctors in general, like GP’s who prescribe antidepressants, but then ignore the damage antidepressants cause, when the patient complains of things like PSSD?

    Or do you mean a specific group of doctors who’s job it is to warn of adverse side effects?

    If so, what is this group of doctors called?

    Also when you say the companies who change the labels on the drugs. I thought the FDA and MHRA were in control of when new warnings went on drugs etc. Am i wrong in thinking this?

    • With doctors their professional bodies are the best bet to target. With regulators, there is no point wasting your efforts.

      D

  13. Peter Hitchins did an exemplary blog on James Holmes. (mary H.)

    Hitchins writes about anti depressants quite regularly and usually finishes with the statement ‘there needs to be an inquiry’.

    And there was ..

    2017 Prescribed Drug Withdrawal Survey: Initial Findings

    http://cepuk.org/2017/09/20/2017-prescribed-drug-withdrawal-survey-initial-findings/
    By admin on 20/09/2017 in News, Psychiatric drugs

    We would like to thank all those people who took the time to complete our recent survey on prescribed drug dependence and withdrawal.
    The information you provided is vital in moving the case forward for specialist services for those adversely affected by prescribed drug dependence.
    The responses we received were as moving and informative as they were upsetting. The true scale of the suffering generated by injudicious prescribing and medication harms was evident on every page.
    We have already put the data to good effect, presenting key findings in two separate Parliamentary meetings with senior figures from Public Health England and the British Medical Association.
    MPs and peers from the All-Party Parliamentary Group for Prescribed Drug Dependence (for which CEP provides the secretariat) have also been presented with the data.
    We intend to publish the survey’s findings in an academic context. However academic publishing is a lengthy process, taking an average of 2 years from the writing up of findings, through peer-review, to final publication. In the meantime here is a summary of some of our initial findings:
    The University of Roehampton & the Council for Evidence-Based Psychiatry conducted a survey of patients affected by prescribed drug dependence in August 2017
    The survey included 1660 responses overall and 369 responses from UK patients suffering from prescribed drug dependence

    Preliminary findings regarding the UK cohort are as follows:

    65% of respondents reported that their doctors gave them little or no information on drug risks and side effects
    51% of respondents reported that withdrawal symptoms lasted one year or longer
    On a scale of 1-10 respondents rated the negative impact of withdrawal on their life to be an average of 8.59
    27% of respondents are indefinitely off work due to withdrawal symptoms
    On average, respondents held 10 withdrawal-related appointments with their doctor
    87% of respondents believe a national 24 hour helpline would be helpful, while 94% believe an accompanying website would be helpful

    Rxisk Newsletter
    September 2017

    “There is also an interesting healthcare experiment here. A prize fund will put sufferers in a position of control. Those who want to claim the prize will have to deliver a cure. And the sufferers can practice an interesting form of Evidence Based Medicine: they can insist on evidence that the claimed cure in fact works.
     
    This is a novel departure that offers everyone a chance to contribute in whatever way they can.”

    RxISK Prize is inventive and we could be on to a complete winner here .. for everyone involved…and isn’t that the point…for everyone involved and asking the Professional Bodies to join in seems a good starting point and if I were a Professional Body I would be embarrassed to become uninvolved .. because it surely would be self defeating, not to want to .. isn’t the point that we should all want the same thing and if we don’t all want the same thing then I really see no point in having Professional Bodies dictating to their clientele – when their cupboards are pretty much empty of anything except endless retorts of rhetoric with no solid foundations – or, alternatively – constantly getting their drawers in a twist ..

  14. Have you tried Cannabis?
    I expect you have but, have you tried CBD over a long period of time? CBD and THC can repair the brain, it encourages neurogenesis, the development of new brain pathways.
    I am profoundly improved from 2012 in numerous ways, and I only have access to as much medicine as I can afford, I expect if I didn’t always run out, I wouldn’t have progressive paralysis.
    There is some much research, it’s difficult to find conditions that some form of, or combination of the medicines from cannabis helps.
    I have literally thousands of cannabis studies republished on barbkueber@wordpress.com but I recently put a bunch together for our literal war against our profoundly ignorant government, that promised legalization, in 2015.
    https://barbkueber.wordpress.com/2017/09/18/surgeon-generals-warning/
    I also write on Quora.com in Medical Cannabis, actually, I just battle back into the top writer spot, and I’m not even paid to write there!
    https://www.quora.com/topic/Medical-Cannabis/
    There are several studies available here
    https://www.quora.com/How-much-weed-do-you-have-to-smoke-everyday-to-get-brain-damage/answer/Barb-Kueber
    I just posted this answer to an epilepsy question, but please listen to the short video to start https://www.quora.com/Would-the-effects-of-marijuana-help-my-condition-with-epilepsy-or-would-it-make-it-worse/answer/Barb-Kueber
    I share your campaign! I look forward to hearing of your successes!
    Please, keep up the great work!
    Barb Kueber

    • Barb

      Thanks for this. There is real evidence that a lot of cannabinoids and endocannabinoids can make a difference. It looks like anandamide in very low doses but not high doses can make rats much more sensitive again – which is close to what we want.

      This is unlikely to be true of all cannabinoids though. Some may be unhelpful.

      The point behind a Prize is to get others with access to these compounds and resources to do the testing to test these things out rather than have people with PRSD, PSSD and PFS have to do all the leg work and take all the risks

      David

      • Hi There is a research project being carried out at Oxford Uni – seems mainly concentrating on pain but considering widening it out .
        ‘The Cannabis Research Plan is a partnership between Oxford Uni and Venture Capital Company Kingsley Capital Partners who are investing £10 MILLION towards creating a global centre excellence in cannabinoids research. Maybe they would collaborate with RxISK or if not donate some of that huge amount of funding. I do not know what a venture capital co. is though.
        The best contact I can find is Psychiatry – Dept of Medical Sciences Division Tel 01865 618 200 email information@psych.ox.ac.uk

      • I know that smoking either a little, or loads, of various strains of high quality weed does nothing for my PSSD. Maybe something slight, but it’s trying to work it’s magic on a broken organ and a broken brain, so nothing really. Certainly not a cure.
        Going for years without smoking weed does’t help either. I smoked weed before SSRIs. I never had even a fleeting hint of any kind of sexual dysfunction before I took an SSRI and it’s coming up to 8.5 years since I took an SSRI. I can’t imagine anything worse than what SSRIs have done to me.

        • There is no question that you are right – straight cannabis is not a cure for P-SSD/RSD/FS. Some people who stop it can find temporary relief after stopping – and windows like this offer some hope. There is work on anandamide though in rats that shows what may be the right kind of benefit at very low doses. This is lost at higher doses. It is quite possible there is something out there people have tried without benefit that is helpful at a fraction of the dose.

          If the answer turns out to be something like this then we will need someone who knows a lot about pharmacology and physiology to explain exactly what is going on and their explanation could make them famous

          David

    • In the UK Royal College of Psychiatrists or Physicians or Paediatrics – in US American Medical Association or American Psychiatric Association etc – will make list and also a draft letter soon for these groupings

      D

  15. So its the royal college of psychiatrists that we need to get to listen? Is this correct?

    Do they know about PSSD? If so what has been their stance in the past?

    My penis feels especially numb today. It feels like a dead piece of meat attatched to my body. I still cant wrap my head around how the doctors refuse to believe this has happened to me.

    How much longer do i have to suffer before someone outside of Rxisk will believe me. Just having this horrible condition properly acknowledged would make living with it more bearable.

  16. In my opinion one of the most promising cure, that can actually fix most of sexual ed anhedonic issue of pssd, is deep brain stimulation of septum area.

    In an experiment did in ’70 an anhedonic and homosexual patient was able to have pleasurable sex with a woman for the first time in his life thanks to brain stimulation.

    https://mosaicscience.com/story/gay-cure-experiments

    I wrote to a neurosurgeon in order to ask his opinion and he said this approach is potentially a cure. I think this is the only way for us. Can you find a neurosurgeon available to start a trial of deep brain stimulation on us?

    • Very interesting but I suspect not the right way to go here. Septal stimulation will not reverse numb genitals. If the flesh is not willing no amount of brain stimulation will change that – but that said if someone with PSSD or PFS or PRSD is undergoing DBS – and this is increasingly likely as both get more common we need a report as to just what happens

      D

  17. Annie….honestly don’t understand your comment – have looked up the links you provided but there is the same in o I supplied which is a ref to a huge research project already being conducted at Oxford Uni It is worth following up any possible opportunities

  18. The news on BBC and elsewhere I guess yesterday highlighted the consequences of taking the Drug Valproate by women with epilepsy and bi polar disorder For epilepsy a 4 times chance of having a child with severe learning difficulties; for those with bipolar 2 times as likely. In 2010 women in France intending to take legal action had legal aid withdrawn, the drug company Sonoli paid the legal cost they had built up in return for keeping quiet. Prescription rules only tightened in 2014. Women in UK have had the same problems and intend taking action as again as with other drugs they were not warned. The company has declared they have been totally transparent with HA but regret the distress. Horrendously sad that it is it may be that the the time is right to get the RxISK campaign into the the public arena asap before the news moves on. The Health Cttee may take it up – will write but isn’t there an obligation for MPs to take up an issue if enough people sign a petition? That may be an option if we can use your letter David.

    • This news is so distressing isn’t it. A lot has been said, over time, about taking care which epilepsy tablets were given during pregnancy – was this particular medication passed as being the ‘safe’ option at that time I wonder? It was of particular interest to me as Shane is on, and now reducing this very stuff. When I picked up his monthly repeat bag of tricks last week, they were unable to provide almost half of the Depakote tablets. I went back this week for them – they still couldn’t provide them. The reason? – their supplier is unable to get them from the manufacturer! What a coincidence!……..or is it?

  19. If you can reach out to known Canadians patients, I can provide information on where they could try a some extracts, they’d have to buy them of course.

    It was undiluted THC oil, aka RSO, or Rick Simpson Oil that worked for me, that is based on the whole plant, a very powerful medicine (best used under the tongue, not for smoking) that started me on the road back from 101 Ibs after my 2nd cancer surgery in 2013. I started using that, then move over to CBD extracts because they were cheaper but still helped keep my inflammation to where I could mostly walk.

    I should point out that our dispensaries and compassion clubs in Canada are illegal and light-years ahead of the licensed sellers in my opinion, no licensed sellers will ever be allowed to sell any cannabis medicines here, in strengths that will do any repair, ever, but I’d be thrilled to be proven wrong.

    • Barbara

      The point here is no-one with PSSD should have to do any reaching out or buying. They have reached out too much as it is, taken too many risks and spent too much money. If you know any Canadian cannabis growers or makers who want to win $100K, let them know about this Prize and let them do the legwork and if they had good ground to think they can help let them then step forward – but if they don’t have good grounds there is no point hearing from them.

      David

      • I will try to get your message out but our dispensaries are fighting for their lives now, like their patients. With so many cancer patients wanting safe treatment without another cancer, and so many others with auto-immune, likewise getting only as much medicine as they can afford, being forced to choice between life and jail, many of us have been forced to become heinous criminals, for years. The government doesn’t mind, they’re hiring even more cops to help us with legalization, they haven’t announce the new private super-prison yet.

        If you want to try it and have patients, you can make this yourselves and if you follow the cancer protocol to start, this is important I think, it resets something. I’ll bet you get some improvement within 90 days. You can even add CBD to offset the unwanted effects as you up the dose.
        You can safely distill in one of these http://www.lilgreenoilmachine.com
        recipe
        http://phoenixtears.ca/faq-about-rso/
        Run from the Cure, Rick Simpson’s story, about cannabis oil * he does use THC oil from Indica, not CBD oil.
        https://youtu.be/hmYNLNF7NBw
        Good Luck!
        Barb

  20. Not looking good for RCPSYCH AND PSSD ..

    Saturday, October 11, 2008

    The Royal College of Psychiatrists President – 2005

    I believe that you all must know this editorial. However I’ve decided to copy and paste because it’s beyond comprehension why so little is done.

    http://justana-justana.blogspot.co.uk/2008/10/royal-college-of-psychiatrists.html

    “However, to my knowledge it isn’t known if this effect persists after discontinuation. What else? That it can cause prolonged sexual dysfunction after discontinuation? In my experience sexual function improves after discontinuation, although as I have said before I am always interested in hearing about new problems that people have with medications. Do you have that problem?”

    http://justana-justana.blogspot.co.uk/2008/10/pssd-condition-still-not-known-by.html

    Results for Royal College of Psychiatrists and PSSD – 1

    http://bjp.rcpsych.org/content/bjprcpsych/202/6/396.full.pdf

    Summary Depressive symptoms and depressive illness are associated with impairments in sexual function and satisfaction but the findings of randomised placebo-controlled trials demonstrate that antidepressant drugs can be associated with the development or worsening of sexual dysfunction. Sexual difficulties during antidepressant treatment often resolve as depression lifts but may persist over long periods, and can reduce self-esteem and affect mood and relationships adversely. Sexual dysfunction during antidepressant treatment is typically associated with many possible causes, but the risk of dysfunction varies with differing antidepressants, and should be considered when selecting an antidepressant.

    Declaration of interest On behalf of his employer, D.S.B. has held research grants from Bristol-Myers Squibb, Cephalon, Eli Lilly, GlaxoSmithKline, H. Lundbeck A/S, Pierre Fabre, Pfizer, Roche, and Vernalis. He has served on advisory boards hosted by AstraZeneca, Bristol-Myers Squibb, Eli Lilly, GlaxoSmithKline, Grunenthal, H. Lundbeck A/S, Pierre Fabre, and Pfizer.

  21. Looking good for Rxisk Prize ..

    Rxisk Prize

    http://pssdblog.blogspot.co.uk/2017/01/sterilising-mentally-ill-post-ssri.html

    top right hand corner

    RXISK launches the $100,000 prize for the cure for PSSD
    http://www.mentalhealthforum.net › … › Experiences
    18/09/2017 · RXISK launches the \\\0,000 prize for the cure for PSSD ‘This Prize is part of a two-pronged attack on the unwillingness of the … Forum; Mental Health …
    RXISK Issues $100,000 Prize for the Cure for PSSD and …

    MENTAL HEALTH ACTION REFORM GROUP AUSTRALIA (MHARG) – Facebook
    https://www.facebook.com/groups/160984830630208
    MENTAL HEALTH ACTION REFORM GROUP AUSTRALIA … The idea for a RxISK Prize began with our involvement … The National Mental Health Consumer and Carer Forum …

    No Diagnonsense – Home | Facebook
    https://www.facebook.com/pages/No-Diagnonsense/264057230688848
    $100,000 Dollar Prize Launched by RXISK.ORG to cure PSSD and other post-psychiatric drug permanently enduring conditions!!! Spread around! Launching the RxISK Prize …

    The School of Disability Studies at Ryerson University …
    https://www.facebook.com/groups/2387431727
    The School of Disability Studies at Ryerson University has … a RxISK Prize began with our involvement with sufferers from Post-SSRI Sexual Dysfunction (PSSD) …

    • Jap

      I have no problem with an endocannabinoid having an effect on PSSD or PRSD or PFS and no problem with acupuncture helping either. But having no problem is not an endorsement. The onus is on those who believe in acupuncture and endocannabinoids to do the work and find out if there is any difference. We can propose pumpkin seeds and all kinds of things. What I would advise anyone with P-SSD/RSD/FS to do is sit back and wait for others do more than talk.

      David

      • David – not sure who you mean by ‘let others do more than talk’ there is a lot of effort being made to get the message out but it’s not useful to post all ‘no responses’. And I guess not many bloggers have enough funds to make a donation.Researchers are not very willing to listen to random people even if info about the prize is included in contact e mails etc, You said you will be willing to follow up leads if you are given contacts – are you willing to allow us to suggest that the people/researchers etc phone you or e mail to discuss the campaign further? I have no self interest or much knowledge about acupuncture – it was something I came across when googling possible research going on for adverse effects of ant depressants. ditto the info on cannabis. But if they don’t reply it is partly at least because I have no status

  22. Interesting about the talk about cannibinoids. Smoking cannabis once at 25 was the only thing that temporarely restored my libido.

    It only lasted for a few hours before the drug wore off, so it is only a temporary solution i reckon.

    Cannabis makes me feel very anxious/ paranoid, so it is unlikely to be a solution for me.

    • Spruce, depending on how much experimentation you’ve done with cannabis, there may be variations that might be more or less tolerable. Getting the dose right is often tricky, at least for those of us who don’t have access to a dispensary. I think many who have experienced increased anxiety/paranoia with cannabis have taken in too much or perhaps had the wrong strain. I don’t wholeheartedly endorse it’s use but it’s been a life saver for me at times. Other times not so much.

  23. The news is travelling fast .. Rxisk Prize

    Pharmacy Forum

    https://www.pharmacy-forum.co.uk/forum/general-information/general-pharmacy-topics/232534-pharmicists-wanted-for-research

    Propecia Kills (@PropeciaKills) | Twitter

    https://twitter.com/PropeciaKills

    A cure for Post-SSRI Sexual Dysfunction can be found. @RxISK is launching a Prize Fund to help make it happen. https:// rxisk.org/launching-the-rxisk-prize…

    Acne.org
    https://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=543

    On ‎14‎/‎09‎/‎2017 at 3:05 PM, Kynarr said:

    A new project involving Post-Retinoid Sexual Dysfunction that might be of interest:
    https://rxisk.org/launching-the-rxisk-prize/
    So this post barely got attention.
    Do you all understand that this competition is about encouraging researchers to figure out what these drugs are doing and to find a cure.
    I guess the alternative is that we can all be here chasing our tails in 20 years time no further on than we are now!
    Actually anyone can win this prize!
    So you all need to be pro-active and spread the word about this competition.
    You should all be donating and getting friends and family to donate as well.

    Yet again I urge you all to report your side effects – there really is no excuses!
    Don’t you see that by not reporting you are PART of the problem and you should be accepting some of the blame for every kid who follows in your footsteps!

    We need expert help here and this competition may just bring us that.

    Report your sides to Rxisk and your own health authorities.

    Share competition details wherever you can.
    Donate!!
    Anyone who is brave enough – do a youtube video (PM me as I know a doctor who is hoping he can find someone who might be willing to do this)
    We also need concise case histories. Maybe someone would like to start this of in a new thread called case histories so that doctors can access the thread without trawling through hundreds of unnecessary posts.

    President and CEO at @mhexcellence

    Gina Nikkel (@GinaNikkel) | Twitter
    https://twitter.com/GinaNikkel

    @RxISK is launching a Prize Fund to help make it happen. https:// rxisk.org/launching-the-rxisk-prize

    https://twitter.com/mhexcellence

  24. I have been monitoring the small improvements (windows) in my PSSD and the return to full PSSD (waves) for a long time now (many years).

    Usually these small improvements/ windows mean my libido/ anorgasmia/ numb genitals go to about 10-15% of what they used to be like pre PSSD. Wheras when my PSSD is fully on/ in a wave, they are about 2-5% of what they used to be like pre PSSD. I.e non existant libido, very numb genitals, and greatly muted pleasure when having an orgasm.

    Recently in the last few months i have had some of the best improvements in my PSSD to date, with my sexual desire/ function returning to about 20-30% of what it used to be like pre PSSD in these windows.

    While 20-30% doesn’t sound like much, it is worlds apart from the about 2-5% of what i was like pre PSSD, that i have when not in a window, or when my PSSD is fully “on”, and at its worst, i.e in a wave.

    Also it is stronger than the about 10-15% of what i was like pre PSSD, that i was getting in the previous weaker windows.

    Two interesting things i have begun to notice since having these stronger improvements.

    One is that when listening to music on you tube when in a stronger “window” i am very noticeably affected emotionally much more by music, than when my PSSD is fully “on” or fully affecting me.

    This is something i noticed a bit before when i had the weaker windows, but i have been deliberately testing this out recently everytime i go into a window (stronger window), by listening to the same songs when i am in a stronger window, and then listening to them again when i go back into a wave (full PSSD), and the difference is really very noticeable.

    When my PSSD is fully affecting me, i feel very emotionally numb, and when listening to a sad song, i feel literally nothing/ or very close to nothing emotionally. I can hear the lyrics, and hear the instruments/ music, but it has almost no affect on me emotionally.

    A week ago when having the stronger improvements, i was listening to a sad song, and i felt very sad, and i started crying, and i couldn’t stop myself from crying (i am not someone who usually wears his emotions on his sleeve, so this is unusual for me). It felt so good to feel emotions like that, it felt healthy, and i felt human.

    This is a real and genuine thing i have noticed RE the improvement in emotional anaesthesia i am having when having these stronger windows. I didn’t realise until recently just how much the PSSD had caused emotional anaesthesia, as well as the sexual anaesthesia. I knew i felt emotionally anaesthetised before, but i didnt quite realise the extent of it.

    The other big difference when having these stronger improvements is that i seem to be remembering my dreams a lot more when in a stronger window compared to when my PSSD is fully affecting me.

    Also my dreams affect me emotionally much more when in a stronger window, wheras my dreams seem to have very little/ to no emotional affect on me when my PSSD is fully affecting me, or when i am in a wave.

    I have monitored/ recorded this difference over the last few months, and it has happened repeatedly enough to confirm to me that it is really happening RE remembering my dreams more and being emotionally affected by them more when having the improvements in my PSSD.

    I do still dream when my PSSD is fully on, but i remember much less of my dreams, seem to dream much less frequently, and my dreams dont affect my emotions anywhere near as much/ if at all.

    Often when in a stronger “window” i can be emotionally affected by a dream for quite a while after waking up; this doesn’t really happen when i am in a “wave”.

    Also two other noticeable changes i have had in these stronger windows is that my genital anaesthesia almost fully went in one window, although my penis did still feel slightly numb. This is the best improvement i have had in my genital anaesthesia to date. It lasted about an hour.

    Another thing i have been having in these stronger windows is fleeting emotions/ memories of emotions linked to sex/ lust, which i haven’t felt since i developed PSSD nearly 10 years ago.

    These fleeting emotions, last a second or two, are quite weak, and then disappear. I often had forgotten these emotions even existed, as i havent experienced them for nearly 10 years, and had forgotten about them.

    Unfortunately for me those stronger improvements have vanished, and i have gone back into a wave since the 20th September. Penis now feels very numb, zero libido, bad anorgasmia, and emotionally very numb.

    I am encouraged by these stronger improvements, but still feel i have a long way to go to experience anything like full recovery.

    I wanted to comment about these recent experiences i have had in these stronger windows, as i feel they might be of use to someone trying to work out the mechanism behind PSSD etc.

    • That’s great, Spruce! Happy to hear you’re doing better. Nothing is hopeless, trust me.

      Look up the power of the mind and healing. There are people who have healed from things they were told were permanant.

      I’ll link a TEDx talk video. There are tons of things out there about healing even when things look hopeless, google Spontaneous Remission Project.

      https://youtu.be/LWQfe__fNbs

      Take care 😀

      • Lauren

        There are few comments to RxISK not posted but I nearly didn’t post this, and won’t post the follow-up one. Most people – I’d imagine – who read at least some of the many posts on PSSD, PRSD, PFS over the last two years would find the suggestion that this is all in the mind offensive. This is exactly the kind of remark that has left Spruce and others close to homicidal. Conditions like Tardive Dyskinesia and enduring withdrawal states can have temporary remissions which suggest these conditions are physical – not mental. These interludes offer hope but not hope that some form of positive thinking will make a difference. The call to think “positively” too often just heaps more guilt on someone with a problem like this.

        Words of encouragement are cheap. Its time to think about donating or at least spreading the word about this condition.

        That said, if you know of anyone who thinks they offer a “mental” cure, it would be helpful if you could let them know of this challenge. While I would eat my hat if such an approach worked, the challenge is open to all. And in the meantime, I would hope more and more people with P-SSD/RSD/FS or enduring withdrawal from antidepressants come to realise there are a lot of people out there delivering herbs, drug or therapies who will happily take your money off you and then blame you when the treatment doesn’t work. Its time to stand together and insist on some honesty

        DH

        • I can totally relate with your last comment David I have been to see neurologists several times had Mri eegs etc and I’m at my wits end when Im told this ssri withdrawal doesn’t last longer than a couple off months. I know my own body better than anyone and to be told I’m suffering migraines is disgusting to say the least and to not be believed has left me hopeless and more distressed than ever. To be fair physically I feel a lot better than I did but the first few years were a hell I couldn’t even describe it was like being tortured continuously for about four years how I managed to keep going I don’t know but I have. Hopefully I’m not just having a temporary respite period but the severest symptoms seem to flare up for months then subside to a manageable level but ever present not forgetting the mental ones which are constant.
          Not being believed is one off the hardest things about all this and to be told my brain zaps (finally stopped after four years) and headaches body contractions,food sensitivities the list is endless are caused by migraines is an absolute joke and enough to send you bonkers. All I want is to be believed recognition ? Is this a common thing ? I mean surely a neurologist would know or heard off brain zaps there’s obviously a lot off medical professionals that haven’t got a clue about theses long term syndromes. Is it common for people’s symptoms being written off as in there head etc ? You would think these should be coming out in the mainstream by now

      • This is well-meaning but ties in with not being listened to, not being believed or taken seriously, being disrespected and written off. Many religious people but also positive thinking, law of attraction types think the sufferer must be doing something wrong and would find a solution if the right mental or spiritual adjustments were made. If this is what gives someone’s ​story meaning that’s great but things go downhill when the implication is that we haven’t​ chased enough rainbows or prayed the right prayers.

  25. Thanks for your well meaning comment Laurie. While i agree with Dr Healy that positive thinking is very unlikely to cure PSSD, i also feel it is important to try and hold onto hope of recovery, and to stay mentally positive in regards to this, as without hope for recovery from PSSD, it is very easy to slip into some very dark places mentally, and this makes living with PSSD a lot harder.

    Also from what i have learnt about PSSD over the years, i do think there is a lot of hope for recovery from PSSD. I am not saying PSSD cant be permanent, but i have seen a lot of people who seem to have genuinally recovered, with time periods ranging for recovery from 1-2 years all the way through to 12 years in one persons case, and everything in between. I have spent a lot of time digging around in the PSSD world.

    If i remember correctly Dr Healy has often compared PSSD to Tardive Dyskinesia, and pointed out that Tardive Dyskinesia and PSSD have a lot in common. If i also remember correctly i think he has also pointed out that Tardive Dyskinesia is often regarded as permanent , with little hope of full recovery, and therefore he takes a similar view regarding hope for recovery from PSSD.

    Research suggests that there is actually a lot of hope for eventual recovery from Tardive Dyskinesia, as the study below shows

    https://www.ncbi.nlm.nih.gov/pubmed/6145520

    I would agree that PSSD and Tardive Dyskinesia seem to have a lot of similarities, and that full recovery from one, gives hope for full recovery from the other too. I would say PSSD would be better described as a persistent condition rather than an invariably permanent one.

  26. Adding to what Karl has said.

    The fact that PSSD and protracted withdrawal is not acknowledged by medicine and doctors, greatly adds to the misery, distress, and isolation that living with PSSD and protracted withdrawal causes.

    I can certainly say that if i had had my PSSD officially recognised and accepted, and i had felt believed, it would have MASSIVELY lifted the distress the PSSD has caused.

    Yes it would have still been miserable, i would have still felt angry, and isolated, but to a much lesser degree.

    Being listened to and believed would have really, really made a big difference to me.

    In the early years when i first developed PSSD, i was very distressed by it, being trapped in a body that couldn’t feel any sexual pleasure. I was frightened i was stuck like this permanently, and was desperate to be believed.

    The constant denial and refusal to believe me was what led to me self harming on a number of occasions, and to make a suicide attempt, which was basically a cry for help because i repeatedly wasn’t being listened to.

    I genuinely believe if i had been listened to and believed, and i had been treated empathetically by the doctors, that i would have never self harmed or made the suicide attempt.

    This denial by medicine about the damage these drugs can cause, can often leave people feeling so desperate and isolated, that they often do things which can further harm them.

    • Thankyou so much spruce for you relating with me about the misery off not being believed by doctors when you approach them about your long term problems after ceasing these medicines. Most doctors don’t believe these problems can last months let alone years like you I think if I had been believed and offered help in the way off someone believing me and the severity duration off it I think it would have helped immensely. I think when people are faced with what we have been through and then told its in our heads and it doesn’t exist I could easily see how certain people could end up taking there lives. Especially when family’s (not in my case I showed them the evidence and educated them) believe what the doctors tell them and the person ends up with no one believing them and feels totally isolated and sees no way out etc.
      This is when these sites become literally a life saver for people looking for answers to what’s happened to them. Thankyou again spruce

      • Just to add I totally believe what happened to you spruce I don’t have pssd but have experienced the sheer frustration and desperation for recognition and I know the distress it causes is extremely damaging and doesn’t help recovery in anyway at all. I hope one day these problems will be widely known by mainstream medicine and not denied. I think it’s only a matter off time the more people have to come forward and our voices need to be heard to break down this wall were stuck behind then it wont be able to be denied.

  27. Dan and Daryl release Rxisk Prize and the $100,000 Bill

    Video released today

    PSSD Interview With Dan 22 from England

    https://www.youtube.com/watch?v=dB9i4cjICKE

    Published on 25 Sep 2017

    *PSSD (Post-SSRI Sexual Dysfunction) is irreversible sexual disfigurement caused by psychiatric drugs. Genital numbness and loss of arousal; or sexual dysfunction.

    Rxisk – adverse effect charity headed by the former secretary of the British Association for Psychopharmacology Rxisk.org

    https://www.youtube.com/channel/UCLKXkRFx-NLV8c-73IRmzrg

    Everyday Psych Victims Project ..

  28. Spruce, the more I read your comments here, the better is my understanding of the condition, therefore please continue to inform us.
    The problem that I find (as a non-sufferer) is that, in trying to spread the word regarding the condition with ref. to:- The RxISK Prize and its purpose, I come up against a brick wall when I’m questioned regarding the condition. I can state the obvious! but that is nowhere near enough to explain your intense suffering. Thanks for all the effort you are putting in to widen our knowledge. I reckon all your comments would bind into a very useful booklet for our use in getting the message out there.. Sometimes calling a spade ‘a spade’ is not as effective as calling it a ,b****y shovel’ – your descriptions certainly fit the latter – easy for all to understand.

    • If you read back through the posts on the topic, you’ll see we have featured enduring sexual dysfunction after accutane along with propecia and ssris. In a previous paper linked to some of these posts, we have been the first that I know of to put enduring post-accutane sexual dysfunction in the peer reviewed literature.

      The biggest mistake everyone who has been drug wrecked makes, in my opinion, is to consider their drug only. Activists in mental health are the worst for this. There are some specific mental health issues but the problems most people have stem from factors shared with accutane and statin sufferers like close to the entire literature on these drugs being ghostwritten and in all cases access to the data on the drug being blocked.

      On this front you might look at RxISK posts on Siliq, Taltz and Otezla earlier this year – all skin drugs – all causing suicidality and birth defects and all hugely useful to accutane sufferers trying to make the case that a skin drug can cause all these problems. We’ve also had posts on Doxycyline and suicidality – and there are good grounds to think it and some related antibiotics can cause enduring sexual dysfunction also. If you just focus on accutane you aren’t going to find the answer to these problems.

      We have a further paper describing 300 cases of enduring sexual dysfunction in the works at the moment and Accutane is the drug which comes in with the most reports.

      Finally we are liaising with the people behind the lastingsides.org site. It was a pity we weren’t all on the same page at this time – but this is one of our big problems, its too easy for us all to slip into ghettoes.

      D

  29. This is how the Accutane thing works, and why it’s so difficult to affix blame:
    Teenager aged 14 at secondary school gets acne; maybe due to family history, (maternal side) gets it pretty badly. Bullying starts fro peers. Kid doesn’t know how to escape/handle this. Hears about RoAccutane-isotretinoin and wants it, thinks it will end all problems, bullying will cease.
    Gets it, after pleading with dermatologist but bullying goes on. PTSD develops. Drug side effects tip kid into depression. Depression now linked by docs to bullying about appearance. Kid believes this. Afraid of being constantly rejected in life as peers jeer and pronounce him almost too ugly to live.
    How DO you live with this, say, aged 16, sidelined by girls, afraid that no one will ever find you attractive and want you. RoAccutane-isotretinoin low mood kicks in, all joy gone from every single pursuit in life. No one wants to know. No medics accept it. PRSD kicks in. Young person thinks it’s their own fault. No one will discuss. Slide into lost hope continues.
    So, who/what was the cause of death? The bullying leading to PTSD, the acne, the drug, the peers’ victimisation, the psychiatrists’ lack of listening? Other life’s stresses and sexual humiliation? A cocktail of misery, and seemingly no way out but death. How do we find a happier solution to all this? Or is it impossible and are we lost before we even start to unpick it?

  30. I experienced no sexual side effects while taking SSRIs and other types of antidepressants over many years (decades, in fact). However, on my second attempt withdrawing from Paxil, I completely lost my libido. That was 13-14 years ago, and things have not improved. I ended up back on ADs, and I again tried going off (this time Cipralex, while continuing on Trazadone) 5 years ago. After 6 weeks off the drug, I experienced extreme akathisia, paresthesia and insomnia that did not subside for 10 months, despite being put on enough tranquilizing medication to kill an elephant. I am now on Trintellix and am tapering slowly from 15 mg towards 5 mg. I continue to take Trazadone for sleep. I have searched and searched for local doctors or other professionals who are knowledgeable about withdrawal to guide me. I have found none in my area or anywhere in Canada for that matter. Dr. Healy, I am wondering how you would advise someone with my history. Is it ever recommendable to go completely off these drugs given the risks of permanent side effects that may be worse than those of continuing treatment? I am so bitter at being a prisoner of drugs that have effectively poisoned me and caused suffering far beyond what I experienced before starting down this path in my teens. But what alternative do I have?

    I did make a donation to the campaign (disappointed no tax-deduction for Canadians), though I am doubtful a cure will be found (Has one been found yet for tardive dyskinesia?). I think it more realistic that those affected by PSSD be compensated by the drug companies for the devastation caused by this drug-induced condition. It deepens the depression the drugs were meant to treat. It destroys relationships and lives. Have the pharmaceutical companies ever made a payout for PSSD? Does anyone know if there is a class-action lawsuit for victims?

    • Dear XX

      We will find a cure and hopefully what helps PSSD will help enduring withdrawal and perhaps T dyskinesia too.
      Before pharmaceutical companies would ever think about compensating people, the problem needs to be recognized – so the key job is make sure everyone hears about it – all docs, all pharmacists and especially teenagers and among them especially teenage girls because being hooked on these drugs comes with high risk of birth defects and miscarriages

      DH

  31. What makes you so confident a cure for PSSD can be found Dr Healy? Similarish conditions like Tardive Dyskinesia have been around a lot longer, but with no cure in sight.

    Also do you really think eventually that most doctors, pharmacists, and the medical establishment will be aware of and acknowledge PSSD as a real condition?

    • Will most be aware of PFS – PRSD – PGAD and PSSD – well that’s in your hands and the hands of everyone reading these posts. Will they acknowledge the problem? Some will have to be dragged through the hedge backwards, but yes they will.

      Will we get an answer – we will be able to dramatically improve things. There are secondary knock-on problems like brain fog etc that may take more time and other approaches

      D

  32. Dramatically improving things sounds good.

    I have done my best to make every doctor and almost every pharmacist i have come into contact with aware of PSSD.

    Most have been resistant to the idea, although a few (more the pharmacists than the doctors) have been semi open minded about it.

    I will continue to try and educate them at every opportunity i get, and drag a few backwards through the hedge kicking and screaming if needs be!

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