Is Recovery from Medication Possible?

Print Friendly, PDF & Email
January 14, 2022 | 16 Comments

Comments

  1. Thank you for this survey Laurie.
    Each item on that list of strategies can mean a great deal to someone, as it is true that we are all different. I see I’m not the only one with a liking for birdwatching, nature excursions and bodies of water.

  2. What a beautiful post, very grateful, I do many of the things you mention but I get really stuck sometimes. I was never allowed to express my anger, you’re right the anger is healthy, and I was shamed recently for expressing myself on Facebook. David said to me “sometimes you just have to be non compliant”. I literally don’t know how to do that. Lots to mull over. I’ve started making videos to express my experiences https://youtu.be/iWnO5brZx_Q but I get waves of self doubt and feel shame, plus I’ve been living in a very unsafe environment and I’m processing serious sexual assaults as a child and an adult. I love you mentioning that more therapy may not help, that’s been my experience, I’ve worked the 12 steps too but because of persistent abuses – which as you point out – become an opportunity- for me to learn to advocate for myself. It’s hard though, some days I’m overwhelmed. However I have to find a way through so I do. I studied kinesiology and energy healing. I’ve said “I’m healing” through gritted teeth when the looping Akathisia ocd thoughts, even yesterday, we’re trying to convince me that some of my engagement with professionals, that change is happening slowly, means I can “check out”. “One day at a time” and REALLY engaging with what I do have, which takes tremendous conscious wilful determination, when the black hole of abandonment tries to swallow me up, sometimes doesn’t touch the sides but some days I feel the flow of a positive shift. Thanks again, hopefully meet you on the road! x

  3. I wanted to offer some hope to those who have been off prescription drugs for a long time (even more than a decade), and are still suffering from protracted symptoms.

    Over the 14 years of me having PSSD, I have heard of quite a lot of people making a full recovery from protracted withdrawal; even after a decade of being off the offending drug that caused the protracted symptoms, and sometimes after a decade of seeing very little improvement.

    People can fully recover, even after a decade or more, of having no, or little improvement at all, in their symptoms.

    Below are links to such recovery stories:

    * Mr B’s recovery story (12 years to fully recover from protracted benzodiazepine withdrawal):
    http://www.benzobuddies.org/forum/index.php?topic=178596.0

    The guy above went under the name of “Mr B” on benzo buddies, and took a full 12 years to fully recover from being “cold turkeyed” off of lorazepam; although he started getting good windows at 10 years off. I have communicated a lot with him, and he believed his symptoms were likely permanent, right up until 10 years off, when he started getting good windows.

    To read the full story properly, it is best to log into benzo buddies as a guest (well worth doing, as his story is an interesting one).

    He mentioned to me in our personal messages on benzo buddies, that when he had contacted Una Corbett from Battle against tranquilizers, and Barry Haslam; they had said they had heard of others that had taken over 10 years to fully recover, from protracted benzodiazepine symptoms.

    * Guy called “Anon 638” (fully recovering from sexual effects from Post Finasteride syndrome, at 15 years off):
    https://forum.propeciahelp.com/t/member-almostcured-15-year-recovery-story/33787

    People fully recovering from the seemingly permanent tardive dyskinesia:
    https://r.search.yahoo.com/_ylt=AwrIdF3qwOJhAS8ALSkM34lQ;_ylu=Y29sbwNpcjIEcG9zAzEEdnRpZAMEc2VjA3Ny/RV=2/RE=1642279275/RO=10/RU=https%3a%2f%2fpubmed.ncbi.nlm.nih.gov%2f6145520%2f/RK=2/RS=f.yOY.6CCx3_.ASqC8PvkSr6gnQ-

    Some links to some people who recovered or mostly recovered from PSSD between 5-10 years off:

    * Alto strata (took 9 years to fully recover from PSSD):
    Altostrata stated:

    On SurvivingAntidepressants.org, we have a number of people who have recovered from PSSD. My belief is that just as most people recover from antidepressant withdrawal syndrome within a few months to a few years, they recover from PSSD.

    PSSD is a component of the autonomic dysruption caused by antidepressant use and withdrawal, as are the symptoms of withdrawal syndrome.

    I myself have recovered from PSSD. After coming off Paxil in October 2004, among other withdrawal symptoms I had the absolute genital anesthesia, which lasted for perhaps a year. Very slowly, genital sensation came back.

    Then I experienced perhaps 3 years of “ghost” orgasms, in which arousal is followed by what would have been an orgasm but instead, a non-event lacking sensation, and then a refractory period.

    Following that, I had perhaps a 4-year phase of “ghost” orgasms with occasional weak orgasms, which gradually became stronger and more frequent.

    At about 9 years post-Paxil, I was fully recovered from PSSD. As I was menopausal before I came off Paxil, my belief is younger people with full complements of sexual hormones will tend to recover faster. However, recovery from PSSD can be almost imperceptibly gradual, which can be masked or even impeded by the very understandable frustration, anger, and despair brought on by the condition.

    * Charlie Brown (fully recovered from PSSD in about 6-7 years):
    https://www.survivingantidepressants.org/topic/12532-charliebrowns-long-road-to-success/

    * Half person (first recovered from PSSD in about 6 years (April 2nd 2015 comment), and then went back on SSRI’s, and got PSSD again):
    https://www.survivingantidepressants.org/topic/8655-halfperson-16-months-off-ssris-ct-with-the-twin-joys-of-pssd-and-anhedonia/

    * Happily derailed (took just under 6 years to recover):
    https://www.survivingantidepressants.org/topic/22421-happilyderailed-from-heaven-to-hell-and-back/

    Some people who recovered from PSSD in under 5 years:

    * Loss leader (recovered from PSSD in about 4.5 years):
    https://www.survivingantidepressants.org/topic/3523-success-lossleaders-recovery-from-protracted-zoloft-withdrawal-and-pssd/

    * The Automator (recovered from PSSD by about 80% – 90% in about 2 years):
    https://r.search.yahoo.com/_ylt=AwrJQ4yqedtfKT0AQzkM34lQ;_ylu=Y29sbwNpcjIEcG9zAzEEdnRpZAMEc2VjA3Ny/RV=2/RE=1608247851/RO=10/RU=https%3a%2f%2fwww.survivingantidepressants.org%2ftopic%2f7574-%25E2%2598%25BC-theautomator-recovering-from-pssd%2f/RK=2/RS=omt7zgZ635iqiCgbbBtCwMtXSEg-

    * Theelt 17 (fifth comment from the bottom on page 17, and took just over 4 years to recover by 70%):
    https://www.survivingantidepressants.org/topic/4213-%E2%98%BC-theelt712-tapering-off-zoloft/page/17/?tab=comments%23comment-400210

    An extract from a recovery story (the link doesn’t work anymore):
    is very brave of you to share your story here.
    I had a similar experience with Paxil in my late 40s– I took the drug maybe a dozen times, and my sex drive changed completely, for years, even after I stopped the medication. The best way I can describe it was that I no longer found women (I happen to be heterosexual) attractive in the same way– I might be fascinated by someone’s sense of humor, or find their physical appearance appealing, but it became a purely aesthetic appreciation. It was like looking at art in a museum– a huge component of physical arousal disappeared instantly. In my case, sex was possible, the physiological functions occurred pretty much as they always had, but they required more effort, as you say, and were devoid of pleasure. It was just bizarre, unexciting– less fun than eating, about as gratifying as ingestion or excretion– so obviously I had little interest in it.
    By absolute dumb luck, while I was earning my masters in clinical psychology, I took my group therapy class with 20 women, all of whom I respected and found engaging and attractive in one way or another. My story is very unusual, because for some reason, after one particularly powerful group session, my sex drive returned abruptly and immediately. I never had any sexual interaction with my classmates whatsoever beyond the kind of innocuous, low-level flirting that might occur between friends in many other social contexts. The nightmare was over, and it literally ended pretty much in a split second. You can only imagine what I felt like that day, staggering around campus, and the streets of Los Angeles, flooded with feelings and emotions that had been absent for years.
    For the last 10 years, I have been wondering if– and how– some group process might be devised that could help some people with PSSD. I corresponded with a local Center for Sexual Health many times from about 2012 through 2015, but it was logistically too complicated to set up a group. Maybe it’s time for me to try again.
    I wish you the best in your journey. My experience of recovery might be very unusual and very difficult to replicate. The program I was in was a very immersive one, and the people I was studying with were really a rare and special group of people; I am still close friends with many of them.
    But I can’t believe that this couldn’t happen for someone else. Best of luck on your journey. I hope you do not give up hope. And as a licensed therapist, I do everything I can within the limits of my scope of practice to warn patients about the long-term risks of SSRIs and SNRIs. I have treated hundreds of people, but I have only had one or two who actually seemed to realize any benefit from this class of medication.

    *I have heard of at least another 10 people (not included on the list mentioned here) who have completely, or mostly recovered, from PSSD.
    * I have also heard of many people who took between 5-10 years to recover from protracted benzodiazepine symptoms; from my time going to the Battle against tranquilizers charity while I was withdrawing off benzodiazepines; and from going on the benzo buddies website.

    While there is no guarantee that everyone will recover, there is a lot of hope for recovery!

    • Spruce

      I am so interested in all that you have discussed here. I used to speak to BAT (Battle against Tranquilisers) until dear Una passed. I never really asked her about long term protracted cases but you have seen many get well and she had too by the sounds.

      How long have you been in withdrawal yourself?

      • Hi Starlight, I was lucky enough to meet Una in person a number of times.

        She was a lovely woman, who has helped a lot of people; and she always told me that almost everyone thinks the protracted symptoms are permanent; but that everyone she has seen come off, went onto eventually recover; even if the protracted symptoms went on for 5 or 10 plus years etc.

        I am no longer in benzodiazepine withdrawal, as I did a very slow taper over about 4 years, and I had relatively few symptoms when I jumped off in 2015.

        Before doing the long taper, a psychiatrist tried taking me off a high dose of lorazepam over 6 weeks, and I suffered acute withdrawal; which was very unpleasant, and very frightening, and I was non functional for 6 months (I could barely make it to the shop to get food).

        After about 6 months of suffering everyday, with no improvement in my symptoms; I found Battle against tranquilizers, and I was put on a dose of diazepam that reversed most of the withdrawal symptoms; and they showed me the correct way to withdraw from benzodiazepine; very slowly, making small 10% cuts about every two weeks. Doing it this way was much more bearable and resulted in eventual success.

        It was then that I realised that most doctors really don’t have a clue what they are doing when withdrawing people off prescription medication.

        I just have the PSSD and emotional anaesthesia left from the SSRI Citalopram now. I have had a small amount of progress in the PSSD over the years, but the progress has been minimal, and frustratingly slow.

        I am trying to stay positive, that I will eventually recover, as I have heard of others who have been off longer than I have, who have recovered.

        Are you still going through withdrawal Starlight?

        • I think the key point here is ‘most doctors have no idea what they are doing’. Benzos can be very tricky – some of them easy to get off and others impossible. For some stopping benzos is easy but stopping SSRIs impossible and vice versa.

          The difficulty for everyone is no-one knows what is going on and everyone finds the uncertainty difficult to tolerate and even someone who gets off benzos easily can become intolerant of someone who can’t

          David

          • It is interesting how people can be affected so differently by different medications.

            I was put on the SSRI fluvoxamine at one point for 5 months, and I had no trouble coming off of it at all, and I stopped it completely cold turkey.

            I had a few brain zaps and felt slightly unwell for two or three days, and that was it. It also seemed to have no real noticeable affect on my sexual function/ desire etc.

            But then when I took the SSRI Citalopram, I developed a severe form of PSSD within the first day of taking it.

            When a psychiatrist tried taking me off of 3.5 mg of lorazepam over 6 weeks, I felt absolutely awful.
            Muscle tremors, severe anxiety, severe insomnia, auditory hallucinations, muscle cramps and tightness, severe balance problems where I couldn’t walk in a straight line, and much more. These symptoms went on every day for about 6 months, without letting up at all, and made me non functional.

            So for me SSRI withdrawal was mild (apart from the PSSD), but the benzo withdrawal was nasty.

            But I have heard of others really struggling with coming off SSRI’s, and others who have gotten off benzos relatively easily (although most people I have heard of coming off benzos, seem to struggle).

        • Thank you for sharing your experiences with Una and her wisdom. That is so comforting. Yes I am still in withdrawal and have been for some time. What did Una think about anti depressant withdrawal? Did she feel everyone recovers from that too eventually?

          How long have you been off the citalopram now? And how does your PSSD manifest? No need to share if not comfortable.
          Thank you again for your heartfelt response.

          • Hi Starlight.

            Una never really mentioned to me about antidepressant withdrawal, unfortunately.

            Are you in withdrawal from benzodiazepines or antidepressants?

            To answer your question about my PSSD:

            I first developed PSSD in November 2007 (so over 14 years ago), with the first Citalopram tablet I took.

            I last took Citalopram in January 2009, (I stupidly took Citalopram for a second time in December 2008 for about 3 weeks, then not realising the risk of long term PSSD).

            So officially off SSRI’s for 13 years, but suffering the effects of PSSD since November 2007 (over 14 years).

            The second time I took Citalopram, my PSSD worsened even more.

            I have a whole slew of persisting sexual effects which are quite embarrassing, but I don’t mind sharing them:

            My penis feels numb, and also my testicle area feels numb (there are parts of my penis that are so numb, I can pinch the skin hard, and almost feel nothing).

            I have no pleasure sensation on rubbing my penis, pleasureless orgasms (or almost pleasureless orgasms), delayed ejaculation (because of the numbness), almost zero libido, and no physical arousal or excitement when I see a naked woman, no sexual fantasy, weak and unreliable erections, watery semen, and less ejaculate (like only about half the amount that used to, comes out now).

            Also an empty and hollow sensation in my testicles; whereas before PSSD, they used to have a feeling of being “full” in some way.

            I also have numb emotions. I get no pleasure from listening to music, I often can’t feel sad (just numb; and I couldn’t even cry when my dad died in 2017). I can’t feel feelings of excitement, or enjoy hobbies like I used to, and romantic feelings are lessened/ numbed down.

            Also since early 2018 I have needling nerve pains in my genital area, that can be mildly painful, and come and go. Sometimes I don’t have them for weeks, but other times they happen most days.

            I also feel genuinely emotionally traumatized by having 14 years of living with the stigma of PSSD; and being gas lighted by the medical profession; and also being disbelieved, and occasionally laughed at by doctors.

            I have also occasionally been laughed at and humiliated by my peers, by women, and even by one family member.

            The psychological effects of living with PSSD have been as bad as the condition itself.

            I don’t so much mention all of this to get sympathy, but more to show the true reality of what it is like living with PSSD.

            But I still have hope for recovery, and I think there is a lot of hope for recovery from all protracted symptoms.

  4. Spruce, thank you so much for putting all of this together. The story of the one man’s spontaneous resolution of PSSD is fascinating.

  5. Thank you for the positive feedback, Tracey. I can relate to much of what you’ve written here. I’ve heard it said we should not compare our insides with other people’s outsides. Sometimes I think we might feel singled out for punishment when in reality what we experience is shared by many in one form or another.

  6. I find Laurie’s post and the comments which follow it so uplifting.
    I marvel at the way that, through all their suffering, these individuals find time and energy to inspire others.
    There isn’t a hint of self pity or of blaming others for their trials and tribulations – they just get on with what has to be done and explain it all in such a wonderful way.
    I sincerely hope that my words, as one who is fortunate enough not to have suffered in the way that they have, humbly offered here, do in some way explain the esteem in which I hold all who must battle on through thick and thin to make sense of a world that has let them down.
    By running a group where we offer support to these very people, I do hope that in every way that I possibly can, I provide an atmosphere where they are able to safely come together and celebrate each other’s successes as well as offer comfort to those who are in greater need than themselves. It is a privilege to know and understand their suffering and their coping strategies. Each one is a hero – and deserve far greater recognition, by society at large, than is being offered to them at present.

  7. Thank you, Laurie

    This is a much needed post which asks much of the questions that we have grappled with since our injuries – the nitty-gritty that mostly everyone goes through – it is a long, long journey of self-reflection and I would say, in most instances, one that one travels alone.

    Each and every one of us has a unique timeline, a different way of how we approached the fall-out.

    Notwithstanding the hurt and pain we just have to look at how so many individuals have picked up the mantle and given their all in the crusade to overcome what was possibly one of the most hellish and hideous challenges it is possible to contemplate.

    Why is David Carmichael about to spend months travelling across Canada from Halifax ending in Victoria BC to tell of his experience with Paxil?

    Why is Wendy Dolin of MISSD campaigning relentlessly on behalf of her husband Stewart Dolin and his experience with Paxil?

    Why did Bob Fiddaman write his book ‘The Evidence, However, Is Clear’ The Seroxat Scandal?

    Why did Peter Gordon write copiously and truthfully about his near-death experience with Seroxat?

    Why are individuals all over the world ceaseless in their condemnation of the suicidal, homicidal, violence properties of SSRIs?

    Why are Mark Horowitz, Michael Hengartner, Peter ,Gøtzsche Robert Whitaker, et al, relentlessly writing and speaking out about SSRIs?

    https://bjgplife.com/book-review-evidence-biased-antidepressant-prescription-by-michael-p-hengartner/

    Why did Patrick D Hahn, Paul John Scott, Jim Gottstein and David Healy write their books?

    https://samizdathealth.org/

    Why did Beverly Thomson write her newly released book?

    https://www.amazon.co.uk/Antidepressed-Breakthrough-Examination-Antidepressant-Dependence-ebook/dp/B092PWSW8F

    Why did we end up tripped up forsaken publicly humiliated?

  8. It’s been 12 years of PSSD and although the damage remains, I am able to lead a satisfying life. Of course the genital anaesthesia and silent orgasms are still there, as well as the emotional numbness and other things, but let’s say that these problems have stabilised at a level that is nevertheless acceptable and a long way from the initial period when they were much heavier. I think that the help of a group is really important for those people who have just discovered that they have PSSD because the first periods are psychologically devastating. I think the first thing to do is to tell them that improvements in their condition are possible and they happen naturally but so slowly that we don’t have evidence of improvement when it is already happening. So the best thing to do is to be patient and trusting and not get hysterical even if you are in a horrible condition. Even though you may initially experience a total loss of interest in things you used to enjoy, you should still force yourself to complete small, undemanding activities such as going for a walk or watching a movie. Being able to complete what you set out to do will improve your self-esteem because you can still do it. Getting back on the right track is really a heroic act and you know that sometimes heroes are alone so don’t worry if you can’t converse with your friends like you used to or flirt with people you like, instead now is the time to focus on yourself and take all the time you need to get back on track, with time you will get your relationships back on a good level. Another thing to do is to try to abandon psychotropic drugs if possible because to err is human but to persevere is diabolical. Being off any psychotropic drug will help your self-esteem more than any drug can do and I am also referring to all the supplements we are tempted to take as treatment for pssd. The best treatment is time and the way you spend your time. If you spend most of your time on the internet researching pssd and on forums trying to figure out which supplement to try next, it makes much more sense to delegate this investigation to people who actually do scientific research and spend your time on things that can help you take your mind off things and get back to your everyday life. If you had to take a ssri it’s because before pssd you had other difficulties, pssd added to them but to face it in the right way you probably have to solve those problems first and facing them differently will help you to distract yourself and take back your life.

  9. Benzos were by far the most difficult for me to come off, went on for about 5 years. All except lithium gave me withdrawl akathisia. It all happened due to a few tablets of sertraline that almost killed me followed by an onslaught of drugging. I have problems typing using a German keypad and swapping to English on it. In almost constant pain in my left hand, typing doesn’t help. Live in fear of getting akathisia again, do not hesitate to move away from people who stress me. What I have been through is utterly horrific in the extreme. “Normal” people don’t really interest me anymore.

  10. So, I’m thankful for the professionals who take care of the problem as well as my therapist. I tried tamoxifen ,trazodone, St. Johns worth. Agomelatine. Every new date helps me. Even if it should be only a new idea or hope. To be honest: I won’t accept the problem at all. I am doing Psychotherapie. This helps a lot. But pssd is the first thing what gives me back my depressions, and what gives me ideas to stop my live. Sometimes it’s getting better actually it’s bad. Having a young girlfriend and Havanna no sensation, no Feelings, and no libido is a shame. Maybe I’m going to start Tamoxifen again, maybe I will take agomelatine again. A sentence…. in the past all this medications helped. St john’s worth gave me much Libido back, maybe more than all the others, but it is a risk for pssd, too.

Leave a Reply