RxISK

Making Medicines Safer for All of Us

Gateway to the Soul

80 Comments

Read the accompanying Sex, Withdrawal and Boundaries post first.  We are looking for anyone interested in the material raised there to comment on or add to the set of questions below.

We are so insensitive to the fact that our skin and gut principally, but also bladder and maybe the inner linings of our lungs, our boundary, likely sees, hears, tastes, smells and encounter our world in a lot of ways that are important to our experience but which we may never pay heed to until our experience changes – until something is lost.

We need questions to build into the form below, or examples to illustrate some of the changes.  There may be lots of phrases in languages other than English that bring home the point that our boundary is where it all happens.

Once we have this in good shape we will be looking to test it out in people with withdrawal problems and PSSD, PGAD, PFS and PRSD.

  1. Do you have any changes in your vision?

  • Blurred vision
  • Double vision
  • Night vision changes
  • After-images
  • Altered color perception
  • Misinterpreting things
  • Hallucinations (seeing things that aren’t there)
  • Visual snow
  • Other

  1. Do you have any changes to your hearing?

  • Tinnitus
  • Other noises
  • Difficulty hearing as well as before
  • Muffled hearing
  • Painfully sensitive hearing
  • Misinterpreting things
  • Auditory hallucinations (hearing things that aren’t there)
  • Other

  1. Do you have any changes in your balance?

  • A general unsteadiness
  • Episodic loss of balance
  • Dizziness
  • Vertigo (a feeling that you or everything around you is moving or spinning)
  • Developed an unusual fear of heights
  • Other

  1. Do you have any changes in your position sense?

  • Co-ordination has been affected
  • Clumsy (eg. dropping things or banging into things)
  • Restless
  • Jittery
  • Stiff
  • Problems with fine motor skills (eg. handwriting)
  • A feeling that you’re unable to fully relax your muscles
  • Other

  1. Do you have any changes in your temperature sense?

  • Altered temperature sense overall
  • Times when your skin feels hot
  • Times when your skin feels cold
  • Times when you feel unexplainably hot
  • Times when you feel unexplainably cold
  • Other

  1. Do you have any changes to your vibration sense?

  • Any unexplainable buzzing or tingling sensations
  • Any absence of buzzing, tingling or vibration when it would be expected
  • Any loss in your experience of music – we hear music but our skin also senses sound waves
  • Any change in your experience of wind – the feeling of wind on our skin partly stems from vibration receptors
  • Other

  1. Do you have any changes in smell?

  • Complete loss of sense of smell
  • Reduced sense of smell
  • Distorted smells (things not smelling like they should)
  • Foul smells
  • You smelling different to yourself
  • You smelling different to others

  1. Do you have any changes in taste?

  • Complete loss of taste
  • Reduced sense of taste
  • Distorted tastes (things not tasting like they should)
  • Foul tastes (everything tastes unpleasant)
  • Other

  1. Do you have any changes in skin sensation?

  • Altered or odd sensations round your body
  • Creepy crawly feelings in your skin
  • Painful sensations round your body
  • Painful or odd sensations triggered by heat or cold
  • Insensitivity to touch
  • Extreme sensitivity to touch
  • Insensitivity to a caress
  • Itching
  • No longer ticklish
  • Difficulty getting comfortable when lying in bed
  • Kissing no longer produces the same sensation
  • Other

  1. Any changes in the “health” of your skin and hair?

  • Dry
  • Oily
  • Blotchy
  • Rashes
  • Swollen
  • Discoloured
  • Urticaria (hives)
  • My skin has become allergic
  • My hair has changed
  • Other

  1. Apart from your genitals and nipples, have you noticed any changes in the pleasantness of touch in any other parts of your body? Is there a part of your body that you enjoyed being touched, but which no longer produces any pleasurable sensation or may even feel uncomfortable when touched.

  • No
  • Yes

  1. Are you feeling pain or discomfort in unusual places?

  • Neck
  • Mouth
  • Tongue
  • Joints
  • Muscles
  • Bones
  • Eyes
  • Other

  1. Do you have any gastrointestinal issues?

  • Digestive problems
  • Bloating
  • Constipation
  • Pelvic floor dysnergia (the pelvic floor muscles don’t relax properly during a bowel movement causing difficulty in passing a stool. If evacuation does happen, the sufferer can be left with a feeling of incomplete evacuation.)
  • Churning / noisy stomach
  • Food intolerances
  • Other

  1. Do you have any bladder issues?

  • Burning sensation
  • Weaker stream
  • Incontinence
  • Post-micturition dribble (a small amount of urine leaks out after you’ve finished urinating – sometimes when you get up from the toilet or after you’ve put you’re clothes back on)
  • Frequent urination
  • A feeling that your bladder or urinary tract isn’t completely empty after urinating
  • Other

  1. Any changes to your sense of thirst and hunger?

  • Disturbance to sense of thirst
  • Disturbance to sense of hunger
  • Cravings for new things
  • Disliking food or drink that you previously enjoyed
  • Nausea
  • Other

  1. Have you had any unusual experiences with local anesthetic (eg. after a dental procedure or minor surgery)?

  • It took longer than expected for sensation and motor function to return to normal
  • I have been left with ongoing reduced sensation
  • I have been left with ongoing reduced motor function

  1. Any other problems that may be linked to altered sensations?

  • Breathlessness
  • Palpitations
  • Cough (we can cough because of a disturbed tickle sense)
  • Altered sweating
  • Other

 

Reader Interactions

Comments

  1. What a fascinating read these two posts make.
    Shane would like to make the following suggestions :-
    point 5 – feeling hot/cold; he suggests there should be an indication that this switch can happen momentarily and without any environmental change whatsoever.

    point 15 – maybe add ” a sense of ‘fullness’ changing to ‘hunger’ within minutes of eating a meal”, also “an inability to eat a full portion at mealtime but an ability to snack without boundaries”.

    All of the above have improved, in Shane’s case, as he’s reduced his intake of Quetiapine but are still far from what would be considered ordinary or ‘normal’.

    Reply

  2. I had lots of symptoms but in particular the two that are most interesting is I had full fledged Raynauds on Depakote (severe white blue red) to cold and then it completely resolved w stopping it. I was a classic case. It was quite annoying & I had to be quite careful. Now gone. Poof vanished. Conversely my asthma got worse. I have cold induced exercise asthma and it’s always been that but mild. Now the response is more extreme. Have to absolutely use Albuterol prior to exercise in cold or throat & chest get tight. Throat tightness completely new. And I had my first allergic rxn to something. Driving in car with a lavender necklace infuser that sent me to ER with attack. Didn’t know what it was for bit. Just got tight throat no sensation of shortness of breath or chest pain and got tachy dizzy developed rash on neck and later chest. I figured it out after returning to car after getting checked out in ER when throat got weird again. Stopped, used inhaler again, washed off neck at br and put it in trunk. All changed since stopping that poison & nope don’t want the poison back. Was killing me.

    Reply

  3. I have problems when waking, in as much that I can rarely get back to sleep. I’ve had this problem since stopping Seroxat. I wake, I rise. It’s been that way since I quit. Others have expressed the same to me over the years I’ve been blogging (13 years).

    Another is auditory problems.

    I cannot stand sudden loud noises, I feel homicidal when hearing an unsuspected loud noise. Also, find it difficult in noisy bars, restaurants, coffee shops etc.

    I can be sat opposite my partner and she can be talking but the table behind me seems amplified. It can, at times, get too much for me.

    I’ve even got off buses before my stop because of noise. Babies crying, unruly youths shouting, etc.

    I remember once my sister was washing plates, the crockery was making a noise. I, quite angrily, told her to stop banging the plates. She mocked me and purposely banged them together. I left the house.

    I was once in a coffee shop, I met a bunch of advocates in Birmingham. I couldn’t stay in the shop because the guy behind the counter was banging something metallic against the coffee filter. Nobody else seemed to notice. Hard to explain, but everything seems amplified.

    I have no problem with listening to loud music (AC/DC are always on my playlist) – when it’s rhythmic it’s okay, when it’s unexpected it’s intolerable.

    This is all post-Seroxat.

    During cold turkey, I exploded at my kids because they were making a lot of noise whilst playing a video game. I wrote about this in my book. I probably would be in prison now if it wasn’t for my nephew being present at the time. He took my kids to his mom’s (my sister)

    Again, many have told me they suffer from noise intolerance post-SSRIs.

    Short term memory is also a problem. I can remember stuff from my childhood but struggle to remember stuff that happened a few hours ago. This, of course, could be down to old-age. I find I have to really concentrate hard if I want to retain information.

    During Seroxat withdrawal (I think it was the cold-turkey stage?) I mistakenly put gravy granules into a washing machine. It went through the cycle. The local dogs loved me after that 🙂

    Great work, David!

    Fid

    Reply

    • Bob

      Thanks for this. I think sleep can definitely be tied to our boundary. Being able to stay asleep is all about rhythms and these come primarily from our boundaries. Our brain plays a very limited part in helping co-ordinate the rhythms but it doesn’t set them up, and couldnt even begin to create them if they weren’t there in the first place – a bit like a conductor couldn’t make music no matter how she waved her baton without musicians there.

      Re the hearing element – this is fascinating too. Its probably the case that our skin or bladders and bowels feeds into our sensitivity to noise also – see Heather’s comment on the accompanying post about delirium – bladder infections are one of the commonest causes of delirium in all of us as we get older – very much a case of the brain paying far more heed to what is going on in the bladder than to anything else that might be happening around us – to the extent of not being to recognise family or friends. It looks cognitive – but its not and an antibiotic sorts it out.

      D

      Reply

      • There were three main problems on the initial cold-turkey from Seroxat, the non-stop crying, the inside of the head floating like it was full of helium and the head explosions.

        Leading on from all this, there were so many other effects, all coming one after the other and this is when I was totally knocked out. There was no way I could cope with this deluge and I had total shut down and was paralysed and bed-bound.

        Although this was nearly eighteen years ago, and I gradually came back to life, the sudden noise problem is highly significant for me. In a caravan you can hear everything going on outside. Quite often late at night, there is a cacophony of car door slamming and then the hooting of horns and then doors and gates slamming, it seems to go on forever. So it’s irritating, but, to me, it hurts in a painful way. I can almost measure the decibels with the radio. If someone with a deep voice puts too much emphasis on a word, there is the feeling of pain again, and it brings on a shooting head explosion, nano seconds of pulverising pain set off deep inside my head.
        Subjected to any noisy environment, and there can be a period of days when it feels like electrical currents are running deep down under my skull. The only thing that alleviates this is total quiet for a few days, but, then if I am startled by a door slam this can then develop in to weeks.
        I have spent a lot of time thinking about this and know the triggers.

        I don’t get unduly upset about this as its not in my nature to get rattled and I am so used to it now that the pain from noise, horrible though it is, I have put in my box marked, terrible on going side effects from Seroxat.

        I lost all sense of wanting food at that time.
        Trying to put food in my mouth was horrible.
        Everything tasted like cardboard and chewing was almost impossible.
        I dropped to around 5 stone and I suppose I was completely anorexic.

        The hair loss was quite severe, so much so, that the practise nurse told me to see the doctor.
        He actually wrote to the consultant psychiatrist to ask if this could be a side effect of Seroxat.
        This was the only time in my history of Seroxat, that a medical person engaged brain, which actually seems quite extraordinary now, as nothing else about ‘my Seroxat experience’ caused any concern or alarm…

        There was so much going on with Seroxat, as one problem tumbled on to another, and I think this idea of weeding out each and every problem is a great way to tackle it, especially at this stage when so much emphasis is put on ‘the brain’.. It also takes away the fright of ‘brain damage’ which I am sure many of us thought was a realistic possibility…

        Like Bob, sudden wakening, and often jumping out of bed, has plagued me since stopping Seroxat.
        There’s a jangle, somewhere, in all this …

        Reply

  4. Since starting Benzo/SSRI I became immediately sensitive to noise, since stopping over 4 years ago I remain with that sensitivity. (2)

    I developed Pelvic Floor Dysnergia some time after my youngest daughter was born. I remain with that now, but not as bad as when I was on both the Benzo & SSRI. (13)

    When I was changed from Prozac to Citalopram I developed frequent urination, which has remained. On bad nights I can go up to 13 times from 10 o’clock at night to 7 the next morning. During the day on a bad day I can go at least every 30 minutes. I have been for cyst tests & a bladder test but all came back clear. It was suggested I have an overactive bladder. (14)

    During withdrawal I developed
    1. Blurred vision
    3. Episodic lack of balance. If I sat in the passenger seat of a car I felt as if the door would swing open so I would reach out to shut it, only to find it was already shut. This happened for a good 8 months from time to time.
    4. Co-ordination has been affected. I had to gesture my left and right hands in order to confirm which was right and which was left, for example, if someone was giving me directions.
    I also wrote sentences back wards.

    Reply

    • I had the urinary frequency same thing terrible initially upon a larger dose reduction. Along with dysthesia (cold mostly) tinnitus and myopathy. It’s mostly resolved. Urinary frequency last about 6 weeks mostly at night but is now thankfully gone as is myopathy. I find that stress emotional or physical can flare remaining symptoms tinnitus cold dysthesia or parasthesia in feet but they improve consistently. I have mostly good days but keep myself busy and I think exercise helps immensely in repairing things. is like to add I’ve never had any of these symptoms prior to withdrawal. It is clearly damage done from med or withdrawal or a combo of both. Crazy stuff.

      Reply

  5. Having observed this website and blog for over a year now, I feel I have to speak up. What I am about to say is not directly linked to this particular blog-post, but as it is the most recent one, it is here that I am going to write.

    Freedom of speech is something that we all benefit from and probably – in most cases – take for granted. With it, comes the right to pretty much say what we like without the fear of any sort of harm coming to us (there are exceptions of course). However, one of the dangers of this freedom is that people (individuals or organisations) can be misleading in what they say. Generally speaking, this is not a problem – it is part of everyday life. The problem comes when that individual, or organisation, has some degree of power; power in the sense that they are listened to by others who genuinely believe that they (the individual or organisation speaking) are an expert in the subject they are talking about. The problem becomes even greater when that individual or organisation is able to position themselves as the ‘leading expert’, and remain unchallenged.

    Rxisk have undoubtedly positioned themselves as the ‘leading expert’ when it comes to PSSD, and it would appear that some people believe this to be true. Well I have some news for those people: Rxisk are most certainly NOT the ‘leading expert’. Anybody that has heard of him and researched what he is doing, will know that Doctor Goldstein (based in America) is many years ahead.

    Rxisk claim that ‘nothing works’ in terms of treatments for PSSD, but this is simply untrue; Doctor Goldstein has significantly helped/treated many people suffering with PSSD. He has also been carrying out his own research into the condition for many years now and has developed a number of tests that can identify various issues in people with PSSD.

    A little bit of information is available on his website, but he is not a blog-writer, nor does he post mini-questionnaires on his site hoping people will come back with answers – I get the impression he is too busy doing real research.

    Why have I written this comment? Not because I am promoting Dr Goldstein, but because I challenge incorrect and misleading information.

    Also, for those people who have reached a suicidal stage and are considering going to Switzerland to end their life I would say this: if you can afford to get to Switzerland, save a bit more and go to America instead – you may just find a Doctor who knows a LOT more than the ‘leading expert’ in the UK.

    If you are not suicidal and you prefer not to go down the treatment route, there is some hopeful news: many, many people have recovered from PSSD. But they don’t hang around on websites once recovered (if they ever did in the first place); for some reason, despite it being completely logical, people find this difficult to comprehend. Maybe logic is eroded over time by incorrect and misleading information…

    Reply

    • Dear T. Williams
      May I respectfully point out that it’s only by having this RxISK forum of anecdotal reports shared by so many of us, that we feel finally that are listened to, and thus, that we mutually extend our understanding of so many medical issues. It’s rather like being in a university of ideas. It is not a case of one organisation or individual setting itself up as a dictatorial fount of all knowledge. The impression I get of its purpose is that Dr Healy floats an idea and asks for opinions and lived evidence. It’s rather like being in a University of Ideas. Those who follow it find it stimulating to debate here.

      For many of us, it is also enlightening and more than helpful. If Dr Goldstein cares to add his ideas, so we can all learn about them, that would be brilliant. We are all learning together. I feel that this current couple of subject posts by Dr Healy are the most fascinating and ground breaking (for me) that he has ever written. His exploration into new ideas, pushing boundaries (literally, in this post) gets more and more exciting.

      As to travelling to the USA to get the best medics I would say this; often what’s billed as the best medic for one person turns out to be disappointing for another. In the end, we all to have faith in OURSELVES as the final arbiter, and in our own ability to heal, using all the available information we can get. I think this is the chance RxISK offers us with all its facets. If most people reporting on this site had had more information before they trustingly took medications prescribed by their doctors, they would not be suffering damage now and we would not be reading the bravely shared but harrowing accounts of ruined lives; by so doing, inevitably many others are saved the same fate. An excellent service, surely, and each of us helping our peers, no financial bias, just the genuine will to enhance quality of life.

      Please let’s be hearing from your Dr Goldstein. It’s almost unheard of that the censors on this site would ever block interesting sharing.

      Reply

    • I’m clearly confused by the motivation of your truly perplexing post. I’d ask to what purpose & whom does it serve? You, by declaring RxISK not an “expert” in matters of w/d, set yourself up as an “expert” in judging such. I’d be willing to entertain that notion (you as an expert at knowing who is not) if there were more substance in your post based on either personal experience or the heart of Goldstein’s treatment plan & research. I looked at his site and he touches upon these matters with regard to PSSD & PGAD but not much there as to the underlying issues that RxISK seeks to sort out in an effort to help those left with symptoms. I’m not really impressed by his posted research. It does take a lot to impress me & perhaps there’s a lot more beyond the website but Ho Hum, it appears to be more of the same. I’m all ears for Goldstein’s work in detail if he’s found a key to even one piece for one person that’s made them whole again. Collaboration would be key. If you or someone else has been helped by him why not share your experience instead of grinding an axe against those here and RxISK? After all it was Healy who first acknowledged (with rare few others) that these things exist and did the work to petition the EMA w/ regard to labeling. RxISK seeks information from patients first and yes does have a directed agenda but claims no doctrine as to the origin or the nature of this beast. You seem to proclaim Goldstein’s severed it head? Again we’re all ears for your experience? & Goldsteins work. You seem to have been interested enough in RxISK to have kept coming back for a year browsing. Again your post is most curious.

      Reply

      • I’d like to be clear here. RxISK (me in this case) has been in touch with Irwin G and had a very positive and helpful response. Its great to have him and others also working on this problem.

        D

        Reply

  6. I would add the following:

    -exercise intolerance (become violently ill when exert self in minimal way). I suspect damage to autonomic nerves.
    -nighttime sweats
    -daytime chills, feeling like I’m in a walk in freezer, goosebumps, body shaking from being cold. Worse around 9:00 to 11:00 am.
    -once start sweating, cannot stop
    -pudendial neuralgia
    -pain with sex and for days after
    -olfactory hallucinations. Randomly and uncued. And may smell a foul smell that smelled earlier in the day when the odor is no longer present.
    -not being able to sense how much time as gone by
    -burning and pain in feet, hands, right side of face, around lips, particularly the right side. Also right eye.
    -don’t know if drug-induced or not: brittle nails with yellowing around edges. Dry eyes. Dry skin. Cannot find a cause. Seen derm, endocrine, pcp.
    -don’t know if drug-induced or not: hair loss. Have a potential other causal mechanism.

    Reply

  7. Also,

    Suddenly feeling like my feet aren’t connected to the rest of my body. Having trouble knowing where my feet are in space and time.

    Reply

  8. “Many people have recovered from PSSD”, I don’t believe much in this, but I would like it to be true and I would like to know more. How do you know? Did you know them, or did Goldstein tell you? I only heard one case that reported being healed thanks to him, and I’m not sure he had “real PSSD” as he spoke of a lumbar problem. Perhaps Goldstein’s approach is to go for exclusion with the causes and by doing this he may have found patients who believed they had PSSD and instead had other problems treatable in different ways. This could be useful at least in some cases: do not take too much for granted PSSD, but perform all the andrological, endocrinological, neurological tests etc., even if in PSSD it has been seen that they are not useful.
    Why is Goldstein not publishing the important results of his research and clinical experiences with PSSD patients if he has cured them in large numbers? If it is true I think that the indications on the procedure of exams to be done to identify the problem and the indications on how to try to treat it should be shared immediately without having to go to America.

    Reply

    • There is one wonderful thing about Irwin Goldstein – he is one of the very few holding out hope to people that there will be an answer and maybe even is an answer for some cases. Thorough investigations like he does of individual cases will never lead to a huge case series with a simple message.

      Someone else who has helped raise the profile of this area recently is Anne Louis Oaklander from Massachusetts who has just published a PGAD case series and gives people results showing that in this case some treatment options help some people but not others

      D

      Reply

  9. Hi David

    theses are the things that Ruth, Di and me would like to add to the list

    Excessive nasal secretions
    Sneezing
    Blocked nose
    Burning either side of spine
    Sensation of cold water running inside head
    Head explosions
    Burning feet
    Cold Sores
    Loose bowels
    Rocking Sensation
    Mouth Pain
    sensitivity to all chemical smells like allergic attack
    sensitivity to all medicines
    headaches
    bad reaction to ketamine

    christine

    Reply

    • This little comment is important – it brings out the element of taste being a skin thing. Our tongues are skin that among other things can taste. Its the same with smell and even right – the key sight cells are in the retina which is part of our skin.

      D

      Reply

    • Check on the metallic taste. I couldn’t eat calbot butter of all things for months. This was during intense period of wean. I believe it’s gone now. Swore to my husband butter was bad. Anyhow had a metallic taste. Just that kind. Weird. Totally due to w/d.

      Reply

      • More tasty bits – after an ERCP for removal of two large gallstones stuck in the bile duct, I had the most horrible metallic burning taste in my mouth for several months. My GP said it could be ‘burning mouth syndrome’ a psychological problem of older ladies, and would I like some amitryptiline?
        Declining that, I said, couldn’t it be related to the two huge squirts of lidocaine the gastroenterologist blitzed my throat with to make it numb before I was rendered unconscious for the procedure. ‘Oh no, it wouldn’t linger on beyond the day of surgery.’ Well, I do wonder. My taste is normal now. I asked the G.I surgeon in clinic about the taste thing at a follow up appointment much later, and he said, some people with gallstone problems (which sadly I still have) do report a metallic taste. When I asked about the funny smell in my skin, he said no one had ever mentioned that. And sighed……

        Reply

  11. One more thought – dogs. Sense of smell so keen can smell a teaspoon of sugar in a swimming pool, sense seizures or hypoglycemic episodes in humans, sniff off cancer, narcotics. They’re world shaped & defined by their keen sense of smell. Altered, they would cease to be what makes them the creatures they are.

    Reply

    • In addition, dogs know immediately when their ‘master’ is unwell. Do they do it by noticing the stillness of the exhausted master or is it the silence of him that gives the message – or is it the keen sense of smell that’s at work? This particular dog will immediately find an allergic reaction rash on me (and I’m not its master!) and lick it for minutes at a time. It clears up way better than with any over-the-counter cream!

      Reply

  12. Another thing to add;

    Not sure how this fits in but do know that antidepressants are antihistamines at heart: severe allergies that at times are totally out of control.

    Reply

    • A side effect of AD’s i- dry eyes to the extent it interferes with eye sight Antihistimines are used for hay fever which includes drying up the ‘tears’ – this pouring of ‘tears’ (not sure what to call them) can cause painful stinging when pooling on the skin below eyes as well as in eyes when sufferering from blepharitis

      Reply

      • I agree with you Susanne, tears due to hay fever or any other allergy are totally different to tears when you cry. The ones due to allergy are almost acidic in stinging strength.

        Reply

  13. Hello, I’m fairly new to realizing I have pssd, I’ve had it for 3 years now but haven’t realized it was an issue until a few months ago. My main concern is fertility, I don’t know how severe most pssd cases are but in my case I can achieve an erectIon and I can climax. It’s obviously not as satisfying and takes longer to do but I can get there. My point is, can someone with pssd have a family ? Is fertility even an issue ? My semen is moderately watery but not all the way. Please I need an answer to this as I have searched but couldn’t find one. Thank you to all who contribute to seeking a cure on this blog, really gives me hope.

    Reply

  14. Another person with PSSD on the surviving antidepressants forum who went by the name of Sad boy has just recently took his life.

    https://www.survivingantidepressants.org/topic/18002-sadboy-zoloft-withdrawal-2-months-in/

    I never talked to him personally, but it is very sad to hear, especially as he was in his early 20’s.

    That is 3 people with PSSD who i have personally known who have taken their own lives in the last year and a half (Ali, Kata, and Margaret), and i have heard of four other suicides because of PSSD happening in recent years. So 7 in recent years. I am sure there are probably more.

    I have also heard of people with PSSD officially requesting to be euthanized.

    Each year more and more people with PSSD seem to be taking their lives.

    When are people with PSSD going to get the help and recognition they need while having to endure this horrible condition?

    Reply

    • Spruce, this is appalling, such awful news. So desperately sad. Especially for you, getting this depressing news, time after time, losing these people who have become your friends in common cause.

      Did you see the references on the other accompanying post from T.Williams about the apparently market leading work being done by Dr Irwin Goldstein on PSSD? I had a look at his site, it certainly seems very comprehensive. David Healy mentions bring in touch with him, maybe pooled information between them can lead to a cure. T. Williams implies that Goldstein has already had lots of success with PSSD patients. Might be worth investigating and passing to your contacts.

      Thinking of you very much, dealing with all this terribly sad news and feeling so frustrated that prescribed poisons can do this, bring about such pain that it makes lives so unbearable, leading to suicides, and yet seemingly the powers that be are unmoved by it. If PSSD and PRSD victims were bumble bees, maybe the World Health Organisation would spring into action. Bumble bees matter, or course, but the drug damaged will also become extinct if we don’t do something. What about a Protest action by PSSD and PRSD with placards stating something like ‘if I were a bee 🐝 you would care about me, I would merit some attention, but I am only a human being being poisoned by pharmaceutical prescribed medications and soon to become extinct from their effects. Don’t I matter, just as much as a bee?’ Bee suits are easy to make and capture attention. Make a buzzzzz. Sorry, not being flippant, but trying to find ways of getting public attention spread by media.

      Reply

    • I think the most compelling word here is ‘recognition’. How is anyone supposed to cope with their lot if they can’t get anyone to take them seriously? A small gesture of acceptance of their pain could go a very long way towards their own ways of dealing with their suffering.
      My next few sentences is not about PSSD but is relevant to the topic of ‘recognition’.
      Shane has ‘voices’ but is not psychotic. The voices came with Seroxat and have never left. In every relapse he had between 2002 and end of 2016, the ‘voices’ were his main problem. Plenty of others too – eating, sleeping, etc.- but the voices were the overwhelming cause of his inability to function. He would explain this at every appointment with the CMH team members and with the psychiatrists. Was this attended to? Was this taken into consideration? Was it recognised that dealing with the ‘voices’ in a practical way could help? NO is the answer to each question. There were increases and changes of medication aplenty which made very little, if any, difference. He got to a point where he felt that he may as well leave it to the professionals to finish him off. This, I feel, is what is happening to your friends. What is the point of ‘life’ if you cannot live it?
      In Shane’s case, he was lucky. In the autumn of 2016,David offered to work with him – in reducing his medications. Before making any changes in that direction, David suggested finding a local Hearing Voices Network group to support with the troublesome voices. Shane did so and their support has diminished the fear that the voices created. Such a simple way to support the underlying cause of panic.
      The voices remain of course but are much calmer.His relapses continue periodically as he withdraws from the drugs – but the depth of despair is no longer present. All because David RECOGNISED the importance of LISTENING and SUGGESTING a possible way through the fear that gripped Shane at that point. How different would our lives have been if HV groups had been suggested when the ‘voices’ were first mentioned all those years ago!

      Reply

  15. As someone who is experiencing pssd symtoms in his early 20s I can’t even begin to explain the pain and distress this has on my life and many others. I got pssd back in 2018 from 3 months of ssris. My whole life turned upside down. Once was a thriving life and Outlook is know bombarded with suicidal thoughts and death is knocking on my door. I beg for any doctor or researcher Dr Healy , Goldstein if you are reading this PLEASE for the love of God and the community of pssd suffers. I would do anything to get my life back in order and resume my career and relationship. I fell like it’s over, but I still have a glimpse of hope. I also want to donate money , if any one could give me a link or email I could donate that would be good. Thanks and please I’m begging that someday there’s treatment out there for this. I lost my soul , my brain, and my sexuality. God bless

    Reply

    • Hi Dom, you will find the ‘support our Rxisk Prize Campaign’ at the top of this page – click and follow the easy steps to donate.

      Reply

  16. I haven’t tried this myself but I’m reliably informed by friends that colonic irrigation brings about, as well as a clear empty bowel, a feeling of instant mental euphoria. Indeed, the ‘high’ is so marked that some keep having the procedure more for that effect than for the evacuations. Does this indicate that the bowel ‘can be happy’ in its boundary, and this may be why constipation can cause headache and low mood. Put that together with the reported side effects by sufferers after taking Accutane, isotretinoin, who say extreme constipation on this drug is almost a given, and thus, could the bowel be implicated in their particular form of depression? Might the bowel be a contributor, because of its proximity to the genital area, to PRSD?

    Reply

  17. One thing that hasn’t been mentioned is what is referred to in music research literature as ‘frisson’ (tingling and goosebumps on the skin, shivers down the spine etc when listening to music -in my case loudish music). That’s something I’ve lost.

    Whilst the focus in the list is anti-depressants, doesn’t a lot of it apply to the effects of so called ‘anti-psychotic’ medications? Development of theory and research that includes this would be useful – boundaries/senses are affected by these drugs too. Is this a future aim?

    Reply

    • Hello h – have you come across Will Hall’s work? I agree that it is vital that more research into ‘antpsychotics’ is needed – especiallly as the most gross invasion of a person’s body is still legal by allowing the injecting of powerful potentially harmful drugs against a person’s will.
      Will Hall of Maastricht University is doing loads of work and has completed a survey but is still contactable -and certainly approachable

      Just want to view survey questions? Click
      English here. and many other languages
      Have you ever taken antipsychotic medication and ever stopped taking it or tried to stop? Are you 18 years or older?
      If yes, then you are eligible to share your experience in this anonymous survey!
      About the Survey:
      Have you taken antipsychotic medication (such as Zyprexa, Seroquel, Abilify, Risperdal, Haldol, Geodon, Stelazine, and others), for any condition or diagnosis, with or without other medications? Have you stopped or ever tried to stop? And are you currently 18 years or older?
      (For a list of antipsychotics, also known as neuroleptics or major tranquilizers, click here.)
      If yes, you can take this survey about antipsychotic withdrawal and attempts to withdraw, including if you stopped taking them completely or if you tried to come off and still take them.
      The survey is anonymous, and you won’t be asked any identifying information. The survey aims to improve mental health services by better understanding medication withdrawal. Lead researcher is Will Hall, a therapist, PhD student, and former patient who has himself taken antipsychotics. Service users/survivors/ consumers from around the world also gave input. The study is sponsored by Maastricht University School for Mental Health and Neuroscience in the Netherlands; co-sponsors include the International Institute for Psychiatric Drug Withdrawal, and FIOCRUZ-Fundação Oswaldo Cruz/LAPS/ENSP.

      Any questions? Please contact will.hall @ maastrichtuniversity .nl, +1 (413) 210-2803
      Want to help spread the word about this survey? Please copy this survey link and share with your friends and networks:
      http://www.antipsychoticwithdrawalsurvey.com
      You can also join and share our Facebook page here:
      http://www.facebook.com/maastrichtantipsychoticwithdrawal survey
      And please share via your social media accouny
      if you want Want survey updates and results
      Please join our email list here.

      Reply

  18. UEL PSYCHOLOGIST LEADS RESEARCH INTO GPS’ NEEDS REGARDING ANTIDEPRESSANT WITHDRAWAL
    06 February 2020
    The new survey, a joint venture between the University of East London and the University of Liverpool, will also examine current practices and training needs among GPs.

    Guidance used by GPs has not given adequate attention to the potential severity and duration of withdrawal effects from antidepressants, according to Dr John Read, professor of clinical psychology at the University of East London’s School of Psychology.
    “What is needed now is effective education and training and we hope our survey, which is independent from drug company influence, can facilitate that,” he said.
    In September last year, Public Health England reported that one in six adults in the UK are being prescribed antidepressants annually, and that withdrawal effects may be more common and long-lasting than various guidelines suggested.
    The National Institute for Health and Care Excellence (NICE) amended its guidelines accordingly in October. Both bodies recommend that patients receive accurate information about withdrawal from antidepressants.

    THE GPs ANTIDEPRESSANT WITHDRAWAL SURVEY (GAWS):
    PARTICIPANT INFORMATION
    You are invited to take part in an online survey. Before you decide whether to participate, please consider the following information.
    What is the purpose of the project?
    The purpose is to increase understanding of the opinions and needs of GPs in relation to the withdrawal effects, in light of recent research findings, the public Health England Review (2019) and changes to NICE guidelines (2019)
    Who is the Research Team?
    Dr John Read (Professor of Clinical Psychology, University of East London)
    Dr Christopher Dowrick (Professor of Primary Medical Care, University of Liverpool)
    Dr Jim Geekie (University of Edinburgh)
    Dr Chris Harrop (West London NHS Trust)
    Dr Julia Renton (West London NHS Trust)

    The whole survey can be read online – no info as to when results will be published – or whether there will be a corresponding survey from users of the GPs services.

    Reply

  19. Not sure if it was mentioned or if it pertains but I and others experience face blindness (which has an official name I’d have to look up). I don’t recall having this before treatment with multiple meds and subsequent withdrawals.

    Reply

  20. A big hello to Laurie

    We need to look at this closely.

    I have been all over studies, articles, etc. and this one struck me as quite apposite.

    I have a new diagnosis.
    Dry Macular Degeneration.

    I am not going to blame GlaxoSmithKline, particularly, Seroxat, but, I am going to bring up the possibilities ….

    Monitor the eyes for ocular effects from antidepressants, anti-anxiety medications

    Source: https://www.eyeworld.org/

    https://www.eyeworld.org/monitor-eyes-ocular-effects-antidepressants-anti-anxiety-medications

    Ophthalmologists always ask about current medication use, and this can help guide treatment for patients experiencing vision changes, Dr. Riba said. For instance, if a patient is newly using an antidepressant or anti-anxiety agent or has had a dose change, wait before fulfilling their request for a new glasses or contact prescription if possible. They may have vision changes from the medication that will subside or stabilize within a short time, Dr. Riba said.

    Source: https://www.eyeworld.org/

    From what I gathered from the optician, it is likely, that within a year or two, a car will no longer be something that I can own and drive, and so, having got my head round it …

    I live where I want to live, I drive to where I want to go, so….

    The Argyll Forests are my oxygen, it is where I want to be….

    This latest problem, will change my life irrevocably …

    Thanks Laurie, you always get to it

    Reply

    • Hi Annie, sorry to hear what’s going on with your eyes. Like you, I hesitate to attribute things to former medication use since it’s not easy to sort it out from what we might experience otherwise. I think legacy effects or protracted withdrawal may amplify the other things we experience, like menopause. Temperature and sleep problems are common but they way I’ve experienced them isn’t what friends describe. Could be there’s an extra layer of misery thanks to legacy effects, but I’ve learned for the most part not to focus on it. I hope you can keep driving though.

      Reply

    • Shane recently had an extra test when at his opticians – apparently a more in depth look at certain issues. The result? ” nothing that we wouldn’t expect considering your medications”. Good to know they’re aware I guess. Also told he’ll probably need reading glasses next appointment – not best pleased!

      Reply

  21. Laurie and Annie,
    On the subject of eyes, a contact of mine who is battling the side effects of Accutane isotretinoin reports floaters which are driving him to distraction. It is also well known that isotretinoin can cause night blindness and other visual problems, like blurring, which our son suffered. I read somewhere that you can’t be a pilot if you’ve ever taken Accutane.

    STOP PRESS:
    May I mention here that the MHRA have an EWG (Expert Working Group) yet again RIGHT NOW, looking into the safety of isotretinoin, as the number of suicide deaths has gone up higher than ever before over the last decade, in 2019. We, (all those either bereaved by or suffering side effects from isotretinoin) have this small window of opportunity NOW to send to the MHRA any accounts of bad side effect experiences with this medication, and I would implore anyone who can, to email Leigh Henderson at the MHRA as soon as possible.

    They have had to delay a meeting (open to some of the public) which was meant to happen in February, because they have already had so many reports flying in to them from people like us. The more they get, the better, we really may have got them sitting up and taking some notice at last. We don’t hold much expectation that the MHRA will really voluntarily accept our concerns, but the numbers of suicides have recently become so concerning that the media and public are putting on pressure now, and they may well HAVE to take some significant action. I won’t use the words ‘take us seriously’ because I’m sick and tired of the stock official disclaiming response ‘we take the safety of our medicines VERY SERIOUSLY’… really….all this ‘seriousness’ hasn’t made much difference to saving lives though, has it?

    Please DO email the MHRA if you have ADRs to report anecdotally linked to isotretinoin and seize this opportunity to make our point. We may not get another chance like this, it’s been very hard won.

    Reply

    • Heather, I don’t have any direct experience to report, but I did work on a letter (that was probably too lengthy to send to MPs) which might be useful in this case. I’ll send it over.

      Reply

    • Major GP IT supplier joins system for reporting adverse drugs …www.pulsetoday.co.uk › news › 20040159.article
      4 days ago – Yellow card reporting alerts the MHRA to any previously unknown adverse drug reactions, as well as new information on existing reactions. The system allows for patient details to be easily transferred into the report – a copy of which is automatically saved to the patients’ records.
      GPs and others need to be reminded – they are notorious for not bothering to send in a report – this makes it simple As you will know I’m sure there is also an app anybody can use on a smart phone to report to MHRA

      Reply

  22. First of all I would like to state that I have nothing against Rxisk, and am actually grateful for their existence and what they stand for – I think they have done, and are doing, an amazing job. However, that does not mean that I won’t challenge things they say – or don’t say – or voice my opinion which may be interpreted as critical.

    Heather R & Jayme: I don’t pretend to be an expert in any field, let alone anything related to PSSD or the many other withdrawal symptoms caused by these drugs. But if you have to be an expert in order to challenge one, then society has a very big problem – thankfully that concept is not a reality (not in the Western world at least). However, my background does give me a decent understanding (and likely a better understanding than most people who have written/commented on this blog) of how strategic narrative can be used to engage and influence audiences, and how the interrelations between these contribute to the building of ‘reputation’ (in inverted commas because its concept in todays interconnected world goes far beyond it basic definition) – and yes this paradigm is very much at play on this website.

    My previous post had one underlying message: there is somebody out there who has been able to help (significantly in some cases) some people with PSSD. As far as I am aware (and I apologise if I am incorrect), Rxisk have not to date been able to help anybody with the actual physical symptom(s); Dr Goldstein has. Therefore, is it not right to point out to somebody with PSSD who may have given up hope and be at the point of suicide, that there is somebody out there who might actually be able to help them?

    I am not saying that I have in-depth knowledge about what Goldstein does – far from it. Through a contact in the States however, I have heard a privately recorded audio message (which is not publicly available) from a PSSD sufferer who has seen very significant progress following Goldstein’s treatment. I also know from written online accounts that he has developed a number of tests that have identified various issues in some PSSD sufferers. Why does he not come to this site to contribute? You would have to contact him and ask him yourself for a definitive answer to that question; however I would point out that it is not the norm for Doctors and Medical researchers to be spending their time posting and commenting about treatments/research on a website, including their own for that matter – the reasons for which are numerous.

    L: Regarding your question about my comment that, ‘many people have recovered from PSSD’: apart from the many recovery stories I have read online (yes I do believe they are telling the truth in the same way that I believe people who say they have not recovered), I know two people who had PSSD in the past (one through a friend) and have both recovered. I know somebody else who was able to speak with a doctor who acknowledged PSSD and had seen recovery from it. I also have another friend who has a contact in the medical world who is aware of this condition and whose colleagues have seen people recover from it. Based on all of this, yes I do believe that many people recover. There is also a website called Antidepressant Survival, or Surviving Antidepressants (something like that, you can Google it) that I researched on quite a while back, that has many documented cases of people that have recovered from the sexual side effects of these drugs (but some of them you really have to search for (there are so many case histories on that site), because they are often people who had other really bad withdrawal symptoms and PSSD was maybe not the main focus of them being there i.e. the title of their story is not ‘Recovered from PSSD’ etc).

    Reply

  23. I’m a patient of Dr. Goldstein’s. Don’t think I will continue to be because like Healy and every other doctor he has no answers. For severe cases of PSSD like mine he’s pretty much useless. Maybe if you just have ED he can help. Maybe. Sorry but it’s the truth

    Reply

    • I suppose, like many other conditions, PSSD appears at different levels of severity in different people. I feel we need to take on board that very many patients are desperate for answers. Arguing who’s doing a good job and who isn’t will not lead us anywhere. Let’s all pull together and pool ideas rather than looking for winners and losers. For the sake of sufferers we ought to do our best – and that also includes donating to the Rxisk prize Campaign. Jordan – this comment is not geared at you, but rather at ALL of us who are on here for one reason which is TO PUT AN END TO SUFFERING CAUSED BY PRESCRIBED DRUGS.

      Reply

  24. T Wiliams thanks for has clarifying that you has nothing against Rxisk which could easily have been misunderstood TW is obviously getting something out of reading the blog but not sure what unless to guide us from being bamboozled by a strategic narrative. – there are many reasons why people with all sorts of expertise are contributing but the article in the NY Times reveals how little the ‘concept’ (of being able to challenge an expert) and how co-ordinated is the silencing critical opinions including of academic experts or the possibility ofhaving open debates is realised or understood by people who have not been working in the area of publishing . Hence The need for independant publishing see The Decapitation of Healthcare; by David Healy, Professor of pharmacology and psychiatry, Available on Amazon.Many who were fortunate enough to know of the academic and activist Bonnie Burstow’s work will be agreeing with Robert Whittaker ‘s homage to Bonnie and his disgust at the way she has been reported in NY Times. A journalistic low, whether a supporter of Bonnie or a critic or a reader who knows nothing about the issues.. .Many who have never heard of her or any other ‘activist’ might have been saved from commiting suicide or from taking drugs which they had not been informed could cause irreparable harm – if they had come across her work – or that of RXisk – and realised the cause of their distress . Using suicide as a point in an agenda the way it is ,is crass and indecent .

    Reply

  25. T.Williams, in order for us to better grasp the concept you are offering, about how strategic narrative can be used to influence audiences etc etc, would you feel able to tell us more about ‘your background’ which is so advantageous in this respect?

    As to being careful not to take away all hope from people who are facing great difficulties inflicted on them by medications, well, yes, absolutely. Where there is perceived to be no hope, suicides can be the result. We find ourselves, being involved with a group of people working with those folk who are suffering isotretinoin damage. We constantly meet people, in chance coversations, or introduced to us by friends, who say they are suffering and wish so much that they had never taken this medication for their acne. They want to know if we know anyone well who ever got completely permanently better from the damage? I’m sorry to say that at the present time, we don’t. But we can say that research is ongoing, with more interest than ever before, and of course there is always hope. Meantime we can offer ways of coping which others have shared with us.

    I think this is the case with PSSD. Forums like this, ordinary interested people like me, pooling and sharing ideas and anecdotal reports, may well spark a lightbulb moment that ignites an idea with the true experts in this field, and may lead to a breakthrough.

    You imply that doctors wouldn’t want to post their ideas on sites like this. If that were truly the case, I actually think that would be rather a missed opportunity for mutual benefit. And actually, I think a fair number of very interesting doctors DO regularly join in with their comments on this site, which is always so interesting for us to read. Brave, forward thinking clinicians who are addressing these enormous problems with us, reading our suggestions and reported side effects, learning all the time. Over on the other post linked to this one, a number of us are exploring ideas about why cells and bodies work in the varied ways they do. There are some excellent minds focussed on all this, which is so interesting to the rest of us to follow. We have some amazing researchers, all with lived experience, all driving onwards in pursuit of breakthroughs, by linking us to what they’ve read. Like I said. A kind of University of Shared Knowledge, free at the point of use. Wonderful.

    Reply

  26. I have put an expensive medical book I own called Psychopharmacology for Mental Health Professionals (Second Edition) by Carl Rak and Elliot Ingersoll up for auction for the Rxisk Prize! The highest donated bidder to the Rxisk Prize (from now) that replies to the twitter post that I set up for it will win it, and I will post it to them.

    This is the twitter post:

    https://twitter.com/RunAgainstCastr/status/1225083925174849536

    No bids have come in so far so I hope some do come in and the Rxisk Prize Goal gets moving again!

    No Surrender!!

    Reply

    • Good luck Daryl. Here’s hoping that it comes up with a top price to beat the auctioned collage of many months ago! Fingers are crossed.

      Reply

  27. In November 2017,after a 2 year taper, I jumped off benzodiazipines. I had been on them 32 years. I experienced many horrific withdrawal symptoms which are so similar to the withdrawal symptoms outlined here in relation to Anti-depressant withdrawal.
    27 months later many distressing symptoms have gone. I no longer have severe insomnia, bladder control is a lot better, blurred vision is better. The inner restlessness has gone.
    I still have daily headaches, dizziness, and muscle tension in my neck and upper jaw.
    I am slowly reducing an Anti-depressant after being on one since 2004. So far so good.. I have reduced from 225mg of Effexor to 84mg in 15months…..I am worried as I go lower and or jump off, what happened with the benzos might happen.
    Now what interests me is why benzo dependence does not cause sexual dysfunction, but anti-depressants do… I have had genital numbing since 2004….why does benzo and or Anti-depressant withdrawal have many similar symptoms…. But only depression pills cause sexual dysfunction…..

    Reply

  28. Susanne: I don’t think I ever suggested that anybody on here was being ‘bamboozled’ by a strategic narrative. That was not my point. And in terms of what I get from the site: I usually visit it one every three or four months for a few minutes, just in case there has been a breakthrough – of any sort. Obviously I have been about more in recent weeks, as I made the comment, and then have checked back in to reply to people. The silencing of critical opinions and dampening, or even prevention, of open-debate is nothing new. Something that everybody on this site needs to accept is: we are in a dog-fight. And whilst everybody here is perfectly justified to complain about the injustice of this situation, nobody has ever won a dog-fight by continually complaining about the fact that they are in one. The people that win such fights are the ones who put their energy into figuring out how to win it.

    Heather R: there are many people better placed than myself to explain the concept(s) that I was referring to – I am sure you can find many journal articles and academic books that cover this area. Part of my academic background is in the area of media/media communications/reputation management. Is this ‘so advantageous’ in this respect? In terms of the ideas and ways of thinking that I can put forward on this site – limited. But in the real world there are people – experts in this area – who could raise the profile of Rxisk pretty quickly, and to the point that they could start to have proper influence. Does that cost money? Yes of course.

    It is good to hear though that doctors/researchers are joining in on the site.

    Anna: you are incorrect when you say that only anti-depressants cause sexual dysfunction. It is very well documented that benzodiazepines can also cause this problem: https://www.researchgate.net/publication/287901029_Sexual_unwanted_effects_of_benzodiazepines

    There are many other articles about this.

    There are also online accounts/reports of people who have persisting sexual problems after halting benzodiazepine treatment and who often take years to recover.

    Reply

    • Sexual dysfunction problems can happen after a wide range of drugs. Benzodiazepines are not notable in this regard. They almost certainly don’t cause PSSD. There is a difference between PSSD and generic sexual dysfunction – even generic enduring sexual dysfunction. A number of antidepressants and antipsychotics will cause erectile dysfunction which may endure in some instances but this is not PSSD.
      There are complicating factors. PSSD may lead to erectile dysfunction when triggered by drugs like Cymbalta that have catecholamine effects. In this case, there will also be the signature feature of PSSD which is genital anaesthesia and or genital irritability in the case of PGAD. There is also the fact that people on benzodiazepines chronically will almost always have been on other drugs and may attribute certain problems to their benzodiazepine that in fact stem from the other drug.

      A key difference between Serotonin Reuptake Inbhitors and other drugs is that in some healthy volunteer trials within days of starting over 50% of young healthy subjects complain bitterly about sexual effects – these are anesthesia and anorgasmia and libido issues – and it may be these effects have endured after only two weeks exposure.

      Nothing like this happens with any other drug. The effect is clear enough for companies to seek a license for these drugs for premature ejaculation and if the SSRIs had been developed later (post Viagra) they might have been brought on the market for their more common sexual effects than for mood effects. Statements like this cannot be made for Benzos or other psychotropic drugs.

      David Healy

      Reply

      • Do you think that if we can find a way of proving that SSRI’s have caused the genital numbness, that if there is ever any justice/ court case about PSSD they wont be able to blame it on the other prescription drugs we might have taken?

        I was prescribed benzodiazepines long term, and also dihydrocodeine for a number of months after some surgery, and doctors have tried to blame my persisting sexual dysfunction on the benzodiazepines etc.

        I know for a fact that my persisting sexual problems were definitely caused by the SSRI

        Reply

  29. On Research Gate -The claim is this is specific to mouse physiology – maybe – but ‘added to drinking water’?!

    Pheromone in baby mouse tears makes females less interested in sex
    26th October 2018
    The discovery may have applications for rodent control.

    When mice aged between one and three weeks cry, they produce a pheromone that makes both mothers and virgin female mice more likely to reject male sexual advances. Scientists believe that by making the females around them less interested in sex, baby mice are able to reduce the competition for resources. The pheromone is called exocrine gland-secreting peptide 22 (ESP22), and researchers say it could one day be added to drinking water to control rodent populations.

    Reply

    • Oh my goodness , whatever will they think of next! By the looks of things then, the human race is doomed – those not hampered by SSRIs will have to think carefully about the water that they drink. Manufacturers of bottled water are rubbing their hands in glee!

      Reply

  30. T. Williams I expect there are people who do find prolonged use of benzos affect libido and the ability to sustain an erection, or have an orgasm.
    I was not one of them, in my 20,s and 30,s I was only taking benzos.. Oh and drinking… No illegal drugs, I was able to enjoy sex and enjoy masturbation.
    All that changed when I was prescribed Sertraline in 2004.Sadly I and many others were fed the :Chemical imbalance claptrap so despite having sexual dysfunction, we dare not risk trying to get off…..
    In 2018, Effexor was prescribed instead of Sertraline.
    Thank you for your comment Dr Healy… Maybe I will get my libido back, when finally off depression pills.
    There have been people talking of going on and off depression pills.. Everytime they go back on they seem to accept sexual dysfunction is a price worth paying.
    As a qualified Counsellor/Psychotherapist
    I know how much people are struggling,
    Also depression pills are being given to men to help them deal with high libido…

    Reply

  31. When that barrier of protection was damaged (my blood brain barrier), by a cocktail of meds, my life was CHANGED completely.
    Now, as a result of my experience, only a SELECTED FEW have access to the a gateway of my soul.
    I don’t mind turning back the hands of time and recalling an experience that left me in torturous state of hell ~ for at least seven long relentless months of my life ~ the rest is history!
    It was a hell that I will never forget however, it has taken me on a journey that makes me question a lot of things about this life.
    Controversy, debate and healthy discussions are part of RXISK and professionals, academics, researchers or other fields have to appreciate that every experience is unique.
    Everyone has a story to tell.
    There are so many people suffering in this universe because of a medicine (s) they have ingested or a dodgy procedure they have gone through.
    Why don’t we FOCUS on making people’s lives better instead of making their lives miserable?
    There are a lot of people out there that talk but don’t know what so many have endured and still endure.
    We are all ‘none the wiser’ if we don’t focus on a remedy to help those who are suffering.
    Sadly, the damage is done and if we don’t have any compassion for the vulnerable, what kind of a society do we live in?
    A lot of medicines are UNNECESSARY and if they are HARMING a lot of INNOCENT people, it would be nice if they mysteriously disappeared : )

    Reply

  33. On Youtube David Linden – Touch: The Science of Hand, Heart and Mind

    The Mind Science Foundation
    1.9K subscribers
    How do you feel?

    David Linden looks at the sensation of touch, from its biological origins to its deep impact on the human experience.
    David J. Linden, Ph.D., is a professor in the Solomon H. Snyder Department of Neuroscience at the Johns Hopkins University School of Medicine. His laboratory has worked for many years on the cellular substrates of memory storage, recovery of function following brain injury and a few other topics. He has a longstanding interest in scientific communication and served for many years as the Chief Editor of the Journal of Neurophysiology. Dr. Linden is the author of three books: The Accidental Mind (2008, Independent Publisher Book Awards, Science Category), New York Times Bestseller, The Compass of Pleasure (2011, Viking Press), and his latest publication Touch (2015, Viking/Penguin).

    The Science of Touching and Feeling | David Linden | TEDxUNC
    TEDx Talks
    154K views

    Reply

  34. Do you think that if we can find a way of proving that SSRI’s have caused the genital numbness, that if there is ever any justice/ court case about PSSD they wont be able to blame it on the other prescription drugs we might have taken?

    I was prescribed benzodiazepines long term, and also dihydrocodeine for a number of months after some surgery, and doctors have tried to blame my persisting sexual dysfunction on these drugs etc.

    I know for a fact that my persisting sexual problems were definitely caused by the SSRI Citalopram as i had been taking benzodiazepines almost every day for over a year before taking citalopram, and they didn’t affect my sexual desire, sensitivity or function at all. On taking citalopram at 22 my genitals started to feel numb, my orgasms became pleasureless, my libido disappeared almost completely, and i also felt emotionally numb. I am now 34 going on 35 and none of these issues have reversed. So almost 13 years i have been suffering.

    Despite pointing out the reasons i strongly believe it was the citalopram that caused these enduring effects and not other prescription drugs, the enduring sexual dysfunction has been (at times aggressively) blamed on other prescription drugs, and even on psychological/ childhood factors.

    I know my own body and i know it was definitely the citalopram, and not the other prescription drugs, that caused the persisting sexual problems, and they definitely were not caused by psychological factors.

    I just worry if there is ever any opportunity for justice in the future, that they will succeed in putting enough doubt that the symptoms of PSSD were caused by “other factors” and not the SSRI, that there will be no justice.

    I am interested in trying to get some type of justice in the future as i have been suffering very badly for 13 years, and i have no idea how long this nightmare may continue for.

    Reply

    • Spruce

      Genital numbness is distinct to any drug that inhibits serotonin reuptake. It happens in 30 minutes on the drug and allows companies to market their drugs for premature ejaculation. Benzos, antipsychotics and other drugs don’t do this and no-one uses them or markets them for PE.

      There is no room for regulators, doctors, experts or politicians to wriggle out of this one

      David

      Reply

      • I hope you are right Dr Healy, and your response has given me some renewed hope, but it is just that i have witnessed first hand over many years, the lengths the mental health system will go to blame PSSD on almost anything and everything but SSRI’s.

        I have been told my PSSD could have been caused by;

        Benzodiazepines; and when my complaint about my PSSD went to the Parliamentary health service ombudsman (PHSO), Avon Wiltshire partnership (AWP) tried to blame my PSSD symptoms on benzodiazepines. The PHSO accepted benzodiazepines might be a factor in causing my PSSD symptoms.

        OCD, I have fairly mild OCD, but when my complaint went to the PHSO, AWP sent the PHSO a study from Czechoslovakia which states that people with OCD have a higher rate of sexual dysfunction than the average population. The PHSO accepted this study, and suggested my PSSD symptoms could have been caused by OCD.

        Psychological and childhood factors; A psychologist woman i was seeing regularly during my complaint process, kept trying to claim she thought my PSSD symptoms were caused by unresolved childhood issues despite me showing her literature that strongly linked my PSSD symptoms to SSRI’s. She also used to keep telling me how instead of me obsessing about my PSSD symptoms (she claimed me continuing to complain about my PSSD might be an aspect of my OCD), that we should focus on how i might be the problem, and not the mental health system etc.

        Anxiety; A nurse practitioner i used to see to get my repeat prescription of benzodiazepines as i was reducing them, refused to believe my PSSD was caused by SSRI’s, and would tell me she felt my symptoms of PSSD were caused by “anxiety”.

        Cannabis when i was a teenager; Another psychologist i saw years ago who was aware of my complaint against AWP; when i told him i had smoked cannabis as a teenager, he suggested me smoking cannabis as a teenager over a decade ago, might be a factor in causing persisting sexual dysfunction, and started asking me probing questions about other illegal drugs i might have taken. He was very sympathetic towards my ex psychiatrist and AWP, and was openly hostile towards me.

        Pre existing to me taking SSRI; When my complaint against AWP went to the PHSO, a record appeared in my medical records stating i had reported a number of sexual dysfunctions to a psychiatrist, just prior to me being prescribed an SSRI.

        I say “appeared” because a short time before this record became apparent, i had requested my full medical record. My copy of my own medical records does not contain this record. I have no recollection whatsoever of stating these sexual problems just before taking an SSRI to this psychiatrist, and i know for definite i had no sexual problems at all before taking an SSRI. In fact i had a very high sex drive before taking an SSRI.

        My SEAP advocate has been involved in other cases where health trusts have actually been caught, adding and altering medical records, and he has told me he believes this record might have been added.

        Also during my complaint process which came to a head in 2013, AWP were caught altering and falsifying large amounts of medical records, and in October 2013 this was even discussed on the local points west news (this is a fact that anyone can look up).

        Despite my SEAP advocate pointing out to the PHSO that AWP had been caught altering and falsifying large amounts of medical records at the same time my complaint went to the PHSO, the PHSO responded by saying that just because AWP had just recently been caught altering and falsifying medical records, that this does not mean they had done so in my case. They upheld that my symptoms of PSSD could have been pre existing to me being prescribed an SSRI, and therefore were unlikely to be linked to the SSRI.

        To cut a long story short i have been gas lighted and even lied to by the medical profession for over a decade, and have witnessed first hand the deliberate lengths the mental health system will go to blame the patient for the damage their drugs have cause.

        I threw everything i could at them to try and get them to believe i had PSSD, including sending in literature from scientists and doctors who believe PSSD exists etc, and no matter what i did they wouldn’t believe me. I tried so hard, over such a long period of time, and i did so in a calm and reasoned way, and no matter what i said or did they wont believe me. They still don’t believe me to this day, and i have been repeatedly complaining about it for almost 13 years!

        Also if you dare to complain about the damage caused to you, its not just the doctor who prescribed the drug who will turn on you; the whole system will. I have had Psychiatrists, GP’s, Psychologists, Nurse practitioners, My Rethink worker, AWP, the PHSO, MHRA, the whole lot will turn on you. This can be a very difficult and even traumatic experience, especially when dealing with this on top of the PSSD and withdrawal problems etc. I have seen multiple suicides triggered because of the treatment from the mental health system. It nearly drove me to suicide at one point.

        I have heard of similar experiences from countless other people suffering PSSD, and other protracted withdrawal problems. I.e the whole mental health system turning on them, and even their own families sometimes turn on them, and side with the mental health system.

        I have even heard of one person with PSSD who after complaining of PSSD to his psychiatrist (including sending his psychiatrist strong supporting evidence that PSSD exists). The psychiatrist refused to believe PSSD exists and then diagnosed him with “Somatic symptoms disorder” which apparently a symptom of this disorder is imagining you have sexual dysfunction. This psychiatrist has conveniently explained away his PSSD as “Somatic symptoms disorder”.

        The psychiatrist has even managed to convince the patients mother that his PSSD is not real and his sexual symptoms are caused by “Somatic symptoms disorder”. Shortly after diagnosing him with Somatic symptoms disorder his psychiatrist discharged him. Nobody believes he has PSSD, not even his own family.

        Reply

        • it’s horribly unfair and disgusting and I am disconcerted despite already know the way it works. thank you for sharing this testimony

          Reply

          • I know L, i am still in shock that all of this has happened to me, and is still happening to so many others.

            Here is a link to a video about Somatic symptoms disorder.

            https://www.webmd.com/mental-health/video/video-somatic-symptom-disorder

            The person i talked about who has been diagnosed with Somatic symptoms disorder has had all of his PSSD symptoms conveniently blamed on this disorder. Because this disorder is now on his medical record, no one will believe he has PSSD.

            His own family even believe he has Somatic Symptoms Disorder and not PSSD.

    • Having now read this full comment of yours Spruce, I now understand your previous question. Best of luck to you when you go ahead with your fight for justice. I’m sure that DH’s reply will have given you a boost in aiming for your goal. I’m sure we’ll all look forward to hear how things progress for you.

      Reply

  35. Spruce I know someone who was prescribed Citalopram for 4 weeks to quote’Calm my old fella down’
    It did the trick and after 4 weeks he stopped taking it.
    Now If GPS know that this is a side affect of Citalopram, how can they feign ignorance that this caused your PSSD?
    Some therapists work with those on the Sex offenders registrar…… I wonder if sex offenders are being prescribed SSRIs…..

    Reply

  36. Correspondence to: P Rochon paula.rochon@wchospital.ca
    What you need to know
    -Prescribing cascades are a type of problematic polypharmacy that occur when an adverse drug event is misinterpreted as a new medical condition, and a second medication is prescribed or a diagnostic test is ordered
    -Older adults are at higher risk of experiencing prescribing cascades due to the higher incidence of polypharmacy and drug side effects than in younger patients
    -Prescribing cascades increase the pill burden for patients, raise healthcare costs, and cause preventable adverse events
    -One way to identify and reverse prescribing cascades is by creating a clinical process map, a tool designed to illustrate a patient’s presentation, symptoms, medications, possible side effects, and interventions
    -Ask yourself: “Could my patient’s new symptom be caused by a drug they are taking rather than a new medical condition?”
    The adverse effects of a drug may “hide” behind common presenting symptoms.1 Prescribing cascades occur when a healthcare provider misinterprets an adverse drug event as a new medical condition and provides a second drug to address the side effect, as described in 1997 by Rochon and Gurwitz in the BMJ.2

    Reply

  38. Zh Nevrol Psikhiatr Im S S Korsakova. 2020;120(1):111-117. doi: 10.17116/jnevro2020120011111.
    [Apathy syndrome in depressed patients previously treated with selective serotonin reuptake inhibitors].
    [Article in Russian]
    Petrova NN1, Markin AV1.
    Saint-Petersburg State University, St. Petersburg, Russia.

    https://www.ncbi.nlm.nih.gov/pubmed/32105278

    Reply

  39. 30 March 2020 thebmj rapid response
    Dear Editor
    We read with interest your editorial ‘Post SSRI Sexual dysfunction’ (1). The commonly reported side effects with these widely prescribed first line drugs are headache, drowsiness, weight gain, sexual dysfunction and gastrointestinal symptoms.

    We would like to take this opportunity to alert your readership to a less commonly recognised phenomenon of SSRI associated bruxism and jaw pain. We see a significant proportion of patients presenting to the Maxillofacial department with Temporomandibular joint disorder and bruxism associated with SSRI use. The literature suggests an association with serotonergic antidepressants (SSRI and SNRI) inducing jaw pain/jaw spasm reversible syndrome (2). The patient presents with jaw pain, teeth grinding and trismus commonly within a month of starting drug therapy or a dose change and which can resolve within 4 weeks of cessation of the medication.

    We commonly come across patients on Citalopram, Fluoxetine, Sertraline, and Venlafaxine displaying side effects of bruxism. Apart from discontinuation of the drug there is reported role of Buspirone as an antidote for this side effect. Bruxism is now included as an adverse drug reaction in the product information of Paroxetine containing products following the decision of the CMDh (3). Colleagues in primary care managing these patients should be aware of this little known yet significant side effect of SSRI antidepressants.

    References

    Reply

  40. World J Otorhinolaryngol Head Neck Surg. 2018 Mar; 4(1): 84–91.
    Published online 2018 Mar 26. doi: 10.1016/j.wjorl.2018.02.005

    Influence of medications on taste and smell
    Susan S. Schiffman

    People infected with Covid19 have been reporting loss of smell and taste sine the start of the outbreak – it is only just being put on the official list of symptoms of Covid19. This article refers to that may older people especially but not only are prescribed many of the drugs suspected of causing loss of smell and taste. Should people be given better examinations to in investigate the relation to Covid? As ever it seems what people themselves have been saying has been trivialised, ignored ot undermined by the sages.

    Reply

  41. Hey,

    has anyone experiences or information on Bupropion (Wellbutrin) as possible cure for sexual dysfunction after SSRI or Isotretinoin? there are a few reports from people who say it helped.

    thanks especially to dr. healy for caring about our issues and taking it seriously whereas so many others are just being ignorant 🙁

    blessings to everyone, may god be with you!

    Reply

  42. 1. Vision – I find it more difficult to focus. And my eyes feel a strange desire to go out of focus. I describe it feeling like one eye wants to go in an opposite direction. No one looking at me would ever notice anything. Eye Drs. say my eyes are perfectly healthy. I also have visual snow/floaters.
    2. Mild tinnitus
    3. No balance issues that I can detect.
    4. No coordination issues I can detect.
    5. I have always had a low temperature my whole life, before SSRI. However, now I notice I always feel cold and I don’t really sweat.
    6. I don’t feel goosebumps when I listen to music or watch something powerful anymore. I can’t feel that “wow” feeling on my skin or in my heart.
    7. I feel slightly more sensitive to bad smells. They make me feel neasueous.

    When I used to get massages before SSRI it would feel immaculate, rapturous. I could feel endorphins being released and was in heaven. Now, I it’s rather mechanical and I don’t even enjoy it. I used to feel a sort of tickle sensation in my brain and now there is none.

    I am no longer ticklish anywhere. The only area that seems to have remained 100% sensitive are my ears. Go figure. They are very sensitive and seemingly just as erogenous as before.

    My acne is very minimal since stopping SSRI. I noticed at one point on a higher dose of Lexapro I felt my acne was getting worse. Since stopping, my skin is less oily, less acne prone, my hair is less oily.

    Kissing, caressing don’t feel like anything anymore.

    I still feel comfortable.cozy wrapped up in a warm blanket in bed. That hasn’t changed.

    I don’t usually feel hungry. Once I start eating I realize I was hungry. I feel the need to drink more water since stopping SSRI. I have to urinate more.

    I have a weird feeling when breathing. Nothing drastic. Just something feels different when I breathe. I can’t put my finger on what exactly.

    Reply

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