Is FSM a treatment for Post-SSRI Sexual Dysfunction (PSSD)?

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January 18, 2016 | 70 Comments

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  1. Brookes I am so impressed with your research but its sad that you cant continue the FSM treatment. It does sound like FSM works and may go on to help many people with PSSD in the future. Its so great to read such an uplifting post. I wish you all the success with the rest of your research, it does sound like you are almost there.

    • Aww thank you very much Anne Marie, I’m so happy that we are making some progress with PSSD research, we had to wait several months just to make certain we were documenting the effects of FSM carefully and accurately. One of the most encouraging parts of this experiment was the correction of testosterone levels pre and post treatment.

        • Sure, I will have to review my specific testing forms to supply the exact numbers if you like; let me know. However, after developing PSSD, my T level was 299, when taking testosterone injections the level went up to about 450, then after discontinuing my natural level would stay around 350; all this was in 2013 and remained the same (350) through 2014. After having the FSM treatment, the level was checked by the Nanticoke Memorial Hospital Healthcare Lab and confirmed to be in the 470’s, It is unclear whether or not this was due to the FSM treatment or the body repairing through the natural course of time. It is also unclear whether or not if in fact the FSM treatment did repair the levels, if the effects are long-term or temporary. I can tell you this past month I have contacted Dr. Mcmakin to see when she will be around Delaware again because I’m starting to get back the testicle pain that PSSD causes, this is thought to be caused when the testes are not making enough testosterone. I do believe if I could undergo more treatments in a short period of time that the effects would be semi-permanent. I currently go to the gym 3 times a week to try and force my body to heal.

          • I’d recommend you go for a free T measurement rather than total T. Ignore the SHBG calculated estimate of free T as it is not valid in males. Anyway, at a total of 450, this proves that low T is not the cause of the problem, as it would have been solved. You are more likely to risk side effects such as hair loss if you continue with T supplementation.
            Yours is the first report I have come across of testicular pain with PSSD. At least the pain receptor part of your peripheral nervous system seems to be working down there. T supplementation will down regulate your own testicular production.
            You seem to have too many uncontrolled variables, such as T supplementation and gym work, with no separate control population to reasonably claim a cause effect response with the FSM any more than it being placebo or relating to one of the other uncontrolled variables. That is not to say it is not, it just remains unproven. In the absence of a formal controlled study, or further independent anecdotal experiences.
            I would advise you to quit the T supplementation route. You have proved this is not the solution by going to 450 without reaction.
            I share your frustrations and desperation for a cure and have tried many routes myself, all with no result. Keep searching!

          • PCNG, please fully read my responses. I explained that I (like most other PSSD sufferers) tried testosterone supplementation, this was in 2013!, 2 1/2 years before I had the FSM current done. I naturally for the past two years couldn’t get over 350 for my T levels. After the FSM treatment, my levels were checked and were in 470’s, but like I said it’s not clear if this was due to FSM or something that improved over time. And you are correct about the possibility of hair loss, I know that persons with PSSD have hair follicles that are probably not adapted to high DHT exposure, and in my personal opinion(not medical or legal) are at higher risks of hair loss. Did you want the levels or free testosterone? I had those checked too.

      • Hi Brooks,

        Your courage to openly discuss your pssd and share your experience is amazing. All of us thank you for that.

        I do have a question regarding the testosterone level. How low was it, and to what level did it go up with treatment? I am asking because my level is in the mid 400 range and apparently that is “normal” for a guy in his mid thirties…with the range being 200-1000… go figure. What makes these levels almost meaningless is the fact that not a single PSSD sufferer has a baseline level. But anyhow, the fact that yours improved significantly does mean something.

        • Alex, thank you for your question. Please read above I believe I discussed this previously. Yes the testing range for testosterone is typically between 350-1100, but the tests don’t usually address what is normal for a persons specific age bracket. As I stated, in late 2012-2013 when I contracted PSSD, My level started at 299 ish, I went through a series of injections and got it up to 450-no improvement in PSSD symptoms. So i ceased the injections in 2013 and the level was steady at around 343-353 for the next two years through 2014 (would get it checked periodically). After the FSM treatment fall of 2015, I had the level checked about 2 months afterwards, and it was in the 470’s, maybe I can talk to Dr. Healy about posting the test results. But like I said before it is unclear whether or not it was the FSM treatment that had this effect or the body healing through natural course of time.
          And I appreciate you applauding my willingness to address my issues publicly, I have always been the type of person that if I say something, I believe in it and will sign my first and last name to it, after I contracted PSSD, I contacted the inventor of the SSRI (now in his 90’s and still working in pharmaceutical development) and told him what his invention did to me, he offered no explanation, I had a long talk with one of his children too.

          • It is no surprise that the guy who developed SSR’I’s did not want to explain why his invention caused you harm, by doing so he could have opened up the floodgates for thousands of people to sue the pharmaceutical companies, their doctors, indeed, anyone who had been responsible for them taking SSRIs in the first place.
            I would dearly like somebody to fix not only the sexual dysfunction, but also the emotional dysfunction symptoms that have crippled me and made my life just an existence, with no intense pleasure in the last 20 years.

    • Adam

      Its probably also worth considering TENS which you can buy i believe. Would be good to get reports from anyone who has tried TENS or Alpha Stim.

      DH

      • Dr Healy,
        I appreciate the work you are doing.
        What do you think, is it safe to buy TENS machine and put one contact directly on genitals?

      • You can – in the UK, large chemist stores/chains like Boots and Lloyds stock them. They used to be used in labour – but I’m not sure whether this is still the case. Certainly available over the counter for chronic pain.

    • Adam, Glad to see others are more anxious to try new strategies to treat this condition, please contact me with any questions.

  2. Yes, TENS machines are readily available to buy. Less readily available, but still available if you google for it, are microcurrent machines used for FSM. There are sports clinics etc in the UK which provide FSM treatment for “tissue softening” etc in sports injuries etc.

    Based on my own experience, I would say that peripheral neuropathy type symptoms are definitely a part of the later SSRI withdrawal/adjustment stage. I remember discussing such symptoms with a friend (who is educated, intelligent, mature and sensible, has suffered from MS for many years and knows her condition inside out) who was convinced I had MS. They even posed symptoms to me, which I hadn’t mentioned, which I was indeed experiencing. Fairly convincing to me that part of the recovery process involves peripheral neuropathy and cognitive symptoms similar enough to MS that an MS patient would identify them as MS.

    However, I do not believe the peripheral neuropathy path is the all encompassing answer. Particularly as regards PSSD. The root, I believe, is in the brain. Even attraction no longer exists and no “highs” to external stimuli exist. It may be neuropathic, but I don’t think it is a peripheral issue. It is brain functioning, altered/damaged by SSRI exposure. The brain will not respond normally to external stimuli, neither will it respond normally to legal or illegal psychoactive drug stimuli, (which I have tried in my desperation) although, as mentioned by me in a previous post, a microdose of psilocybe did offer good, positive mental relief, but even then the PSSD remained. The whole attraction/love/urge/desire/go function inside the brain is burnt to a cinder. Can’t think, can’t remember, don’t know, don’t understand, but I know what did it…SSRIs. Despite this, the microcurrent route is certainly worth exploring further, and given the right study, should not be too difficult, time consuming or costly to pursue.

    Myself, I am now beyond all the really weird peripheral symptoms. I’m just brain dead and groin dead. Days, weeks, months, years go by and all is nothingness. No future, no nothing. Zombie.

    • PCNG, Thank you for your encouragement and insight into PSSD, interesting your friend was convinced you had MS. If you type the symptoms of PSSD into the symptom checker system available online one of the closest matches to your symptoms is MS, the other it lists is a medication side effect.

      As far as your opinion that PSSD does not stem from peripheral pathways, I dont think we should be so quickly jump to this conclusion. Please remember that the peripheral and central pathways influence each other, and if one system is off, the other will be also. For example, 70 percent of serotonin is made in the gut, if there was an issue with your peripheral gut that rendered you unable to produce serotonin in the gut, do you think your brain would suffer many irregularities? how about if your peripheral nervous system quit making testosterone?.
      We need to keep the possibility open to all sufferers that PSSD may very well stem from the peripheral nervous system, then again it may not. The body’s ion channels run through both the peripheral and central nervous system.

    • PCNG

      I hear you on this:
      “Even attraction no longer exists and no “highs” to external stimuli exist. It may be neuropathic, but I don’t think it is a peripheral issue. It is brain functioning, altered/damaged by SSRI exposure”

      But it still could be peripheral, if when we (used to) feel those highs, our whole bodies sort of lit up but it’s not something we sense, like cold or hot. We call emotions “feelings,” but where do we “feel” them?

      When psychiatrists talk about “brain disorders” and only study what is between our ears, they are trying to pack too much into the blob between them. I think the whole nervous system is the brain. There’s no drawbridge in the neck.

    • You mentioned Psilocybe microdose. It will integrate the Brain and is the Best anti depressant I know of. After a heavy trip you will seemto have more brains than you ever had the next day. You can try extracting Syrian Rue it is legal and is cheap about 4 dollars a 1\2 lb. . I’m sure Dead Meat sucks really bad. You could try smoking a couple big hits with your intimate partner maybe up to 5 0r 6 good hits.of freebase Rue extract with mint leaves. MAOI can hurt you if you drink beer or eat cheese or other foods so find a list on erowid of MAOI forbidden foods. Do not take th other anti depressants it could kill you … Smoking is safer though…. (my opinion) You can freeze and grind two 4 oz bags of Esphand seed (syrian Rue Seed) from your local Persian foods store and throw it in a crock pot with a good splash of white vinegar. Use the lowest setting let it simmer 12 – 24 hours and pour it through a tee shirt and squeeze hard the herb ball and throw it back in crock pot for 1-2 hrs with a little water and a splash of vinegar again and simmer two hrs and pour again through tee shirt material again and disguard the spent plant seed material. put the two extractions liquid together and put in the freezer until it gets thick at the bottom and pour off the liquid carefully and keep the thick stuff at the bottom. Add a bit of water I would use distilled and pour some baking soda in the solution and add and mix it in until the fizzing stops and you should have freebase Rue in water . (Food Grade} So put it back in the freezer until the stuff crystallizes or lets say thickens again on the bottom. Slowly pour off the excess water and keep the tan gunk at the bottom and you may figure 3-4 % of a lb of Rue Seeds… That is a fair amount and beats 12 dollars a gram on ebay! cover with acetone about 1\8 inch above the rough crystal gunk and swish it around or stir iy a little. Pour the excess acetone off onto a plate save it and dry it with a fan. Wash it again with acetone and pour off on the same plate and dry the liquid again and slosh the bukk of what is left onto another plate and fan dry. Make sure you get pure acetone from ace hardware. We have acetone in our body in small amounts. It drys up easily even without a fan until there is no acetone smell. The pour off on the other plate you may wash again with acetone and it will powder crystallize as the other. Acetone helps it crystal up easily and ends up more like a powder. I don”t wash it more because you will wash out bore of the other alkaloids. About 5 alkaloids. erowid or Nexus has food grade extraction of Syrian Rue and should be similar. This stuff extracts easily… If taken internally mix it with lemon Juice and a little water. It is used in the middle east for Alzheimers and Parkinsons. Has anti cancer properties and good against parasites and anti biotic resistant bacteria. It is said to be aphrodisiac and tends to be sexually stimulating when smoked in heavy hits. I put about 25% Rue to 75 % mint leaves. I am not sure if it is legal to take internally but is legal to extract and posses.. Terrance Mckenna seems to think psylocybes are aphrodisiac.. John Hopkins Does some Research studies on antidepressant effects of Psilocybe and I agree 150% the Best anti Depressant at that in non hallucinogenic doses. (but NOT Legal in America. The Psilocybin study was by Roland R. Griffiths, PhD at Johns Hopkins..

    • Thank you for this post. I too, suffer from sexual;l dysfunction, along with the inability to feel intense pleasure – no endorphin rush from exercise or fear, no getting happily drunk, without the ability to feel love, and totally unable to orgasm. I assumed this was a result of the brain damage I suffered from a mid brain stroke, but maybe it is a consequence of the Effexor that I took for probably a year, whatever, neither the brain damage from the stroke, nor the SSRI damage appear to be able to be successfully treated, so I can continue along in this black, empty life.

  3. I don’t think the peripheral nervous system actually makes any testosterone. But here’s another possibility: Critics of the fad for testosterone supplements have pointed out that it’s hard to tell who has “Low T” because the average man’s levels constantly rise and fall. If you’re a sports fan, your testosterone levels will go up when your home team wins the Super Bowl apparently!

    In other words: certain experiences set off surges of emotion — arousal, happiness, fear — that involve physical processes like hormone release. In a “healthy” person, they don’t even have to be physical; just thinking of sex (or football, I guess) can make your heart speed up. People with PSSD seem to have lost their ability to respond to many ordinary physical or emotional stimuli.

    So maybe the FMS is giving your nervous system a stimulus it associates at a deep level with well-being, interest in the world, even arousal. If so, maybe various types of electrical stimulation might be helpful. Maybe other kinds of “experiences” as well. Unusual sensory stimuli – deep pressure, spinning, etc. – have been used to help people with autism, learning difficulties etc. Mainly young kids, but some adults use these techniques as well. Some of the claims made for these therapies seem inflated to me, but they definitely do something for some people …

    • Wise words. Part of the post SSRI deadness could also be likened to an adrenal malfunction, a lack of fight or flight response to external stimuli.

    • Steven, I’m sorry I thought you were asking about the T levels pre and post that was asked in question #1; can you tell I still have the PSSD cognitive impairment? lol.
      Anyway, the best way to explain it was that after I had the treatment there was not a significant- immediate benefit in sexual function. It grew gradually until it hit a certain point, then slowly started to dwindle away in the same speed that it improved, best analogy is like the picture of a mountain with a peak with equal sides. As far as you asking for specific number scale, there are many different PSSD symptoms I have. from penile anesthesia, cognitive/memory impairment, hormonal, erectile dysfunction, anorgasmia, emotional numbing, inability to move for days after exercise due to muscle issues, chronic fatigue, no motivation, etc. I would have to know which specific symptoms you are referring too to accurately provide details of improvement. Are you referring to strictly sexual function? or the other ones too?

      • Thank you Brooks.
        Would be great if you could provide some number for emotional numbing, penile anesthesia and erectile dysfunction.

        • As far as the peak point, It was a slow gradual point that took roughly a month to reach, and I started seeing the difference in about 2-2 ½ weeks. I honestly walked away from the treatment at first thinking that it had no effect on sexual function, I thought if there were any benefits it would be instantaneous like it was when I took the MSM powder in 2013. After about a month it was at the peak point, then slowly started to drift away again. It was by no means a cure, I was able to achieve satisfactory intercourse roughly 1 time per week (awesome for a guy who was semi-impotent since 21). Sexual contact had to be slow-moving and not fast. But the one benefit that I believe all males on this blog understand is I didn’t have to focus on keeping the erection, it just kinda came. Usually when I attempt intercourse I take the Levitra and I’m so focused on keeping a partial erection that I’m not paying attention to my partner, it makes for a very unattached sexual experience. The penile anesthesia is hard to explain, because there is a total lack of stimuli response to any sexual contact, but it was improved moderately during the improvement stage and I was able to feel intercourse. Usually I have to force ejaculation and there is no pleasure, during this period It wasn’t forced as much and I experienced pleasure during ejaculation. I was able to obtain a strong erection, I didn’t realize how strong of an erection it was until my partner pointed it out, I’m so used to the PSSD spongy flimsy erections I get. The best part of this treatment tho was the way I felt connected to my partner, usually sexual function was like a chore for me and I wasn’t at all connected to her, during this period I actually had the desire and longing for my partner which I know she has had to live without for as long as we have been together, I felt intimately connected to her and even made out with her (usually don’t have desire to do this or have intimate contact), I felt connected during intercourse the way I did at 19 before I contracted PSSD.

  4. Johnanna, testosterone is mainly produced in the peripheral nervous system, not the central nervous system. Testosterone is produced by the gonads (by the Leydig cells in testes in men and by the ovaries in women), although small quantities are also produced by the adrenal glands in both sexes. Please remember that the central nervous system is only composed of the brain and spinal cord.

  5. I was on Seroxat for 15 years. In 2007, I stopped experiencing your regular human emotions overnight (no history of schizophrenia). I tried to get off it thinking things would go back to normal, but the catch 22 of withdrawal side effects made me stay on it even though I knew the emotional numbing was right down to Seroxat and not depression. In 2009, I was hit full whack with sexual dysfunction, chronic insomnia (never experienced in my life), and 100 percent emotional numbing. Once you’ve been labelled once in your life as depressed, don’t ever expect a doctor to take seriously reports of suffering these post SSRI side effects because let’s face it, they are all symptoms of depression anyway. I’ve learned to keep my mouth shut and suffer in silence while literally buried alive. My post SSRI symptoms have me holed up in my government-funded rented flat 24 hours a day for the last 5 years. I have no motivation, no fight or flight responses, and basically a severe form of chronic fatigue syndrome that has me bedridden as a result of a total collapse of the nervous system. Doctors said I as a write-off and I can’t work. I also prided myself on making my own way in life. Will now never even have my own house or family to fill it. I find it hard it raise my head in society.

    I’ve been doing a lot of research too, and basically what anyone suffering from PSSD has is Dysautonomia. Side effects of drugs can cause abnormalities in the function of the autonomic nervous system, producing an iatrogenic form of dysautonomia. My sympathetic nervous system is also defunct because I am totally incapable of feeling empathy or love and affection towards anything or anyone, whereas once upon a time, I was the most caring person that ever was.

    I just wanted to say that you’re all wasting your time looking for cures. Taking 20mg of Seroxat got me into this mess. I’ve learned that drugs are never the answer to anything. We are not God and we cannot play God with our bodies. It’s a guessing game. You have to let your body kickstart itself, let nature takes its course. But, I have lost hope. Little did I know that by disabling my re-uptake pump in my brain for a period of 15 years that the recycling effect of serotonin would be seriously jeopardized, so much so that my natural supply would eventually run on empty. This is where the problem lies. There is no way to heal that damage but to let nature take its course. Using FSM to treat PSSD is like using electric shock therapy to heal depression. Stop playing God – you wouldn’t even know for how long to leave the machine switched on for, just as you can’t predict 20mg of any drug is enough or too much to cure anything. Sorry to be so negative, but you are all wasting your time. The body must heal itself. Ever observed the evolution of a physical scar?

    But, in my case, 6 years have passed and there is no change whatsoever. I have lived like a houseplant, bedridden 24 hours a day with a severe form of CFS during all this time. No energy, no motivation, no sex drive, no sleep, no nothing, and my doctor nodding away with the cocky, ignorant “it’s just a returned depression” conclusion. GSK off scot-free and me doing the jail time day in and day out for the last six years, watching the world by with my PC as my only friend. My inability to feel anything has alienated me from all my friends and family, not to mention ex-boyfriend, as they are fed up and angered with my total and utter indifference towards them. You cannot understand what this is till you are in it. It’s like having locked in syndrome only you can move. Seroxat has affected every aspect of my life. I’m not a shadow of the person I once was.

    • Maeve, I find your comments heartbreaking. I hope that you’ve written this on one of your ‘worst’ days and that you do have some relief from these very sad feelings. If not, may I suggest that you find Mind’s elefriends website (a branch off from Facebook) where you will find fantastic support from fellow mental health sufferers. In time, you may well be able to offer some support of your own to others. Our son has found it a lifeline in his worst moments.

      • There are no worse days – all my days are monotonous since being inflicted with PSSD: no highs no lows. These are not sad feelings I can assure you as the very problem is I feel NOTHING – no sexual feelings, no emotions. It is NOT depression. How can I help others? For that you need empathy of which I have none.

  6. Maeve, Thank you very much for your correspondence.

    If you keep telling yourself that you will never get better and that there will never be a cure; you simply will never improve. I’m a male with PSSD,. PSSD has taken everything from me, and I once had the same attitude as you. I lost my job and felt all alone in the world, I later ended up in the hospital for suicide.

    You are telling these other sufferers that there will never be a cure for PSSD. I refuse to give up hope, and a lot of other people are refusing too. I have severe cognitive/memory impairment and if I can construct theories and treatment hypotheses so can you! your attitude is your biggest enemy in your chances of being cured. You claim your home all day with your PC, why don’t you start reading studies involving the influence of Ion channels, or anything else you feel is contributing to PSSD, its better than sitting around proclaiming your own demise.

    Somewhere in you has hope. Otherwise you wouldn’t have researched our publication or cared to comment.

    I for one believe that a cure is on the way. I have been this way and had an awesome girl who stood by my side through all of this, and even took me to see Dr. Healy and doctors at UPMC. I refuse to give up, not just for my own sake, but for the person who has been by my side this whole time, I know she deserves more than the emotional detachment that I have given her. This will end, and I’m going to live a functional; joy-filled life. We are close to curing this thing.

    • First of all, I have had PSSD for a full six years now with no improvement whatsoever, and it can therefore be assumed the condition is permanent.

      Secondly, no-one has as of yet pinpointed exactly the cause of PSSD, and therefore every attempt you make to heal it is a complete and utter stab in the dark.

      Thirdly, SSRI drugs got you into this mess, and yet you want another destructive drug to heal the very side effect of a drug that is now claimed to be even ineffective in the treatment of depression? When will you learn?

      And lastly – just an observation… many people (including myself) claim they are not just affected sexually by PSSD but also emotionally, ie: not able to experience feelings of love or feelings of any sort on any level to be precise. Just curiosity, but how can you even have a woman by your side or a love interest if not one ounce of you is capable of showing that person love or affection? How can a one-way relationship work?

      By the way, SSRI drugs targeted the re-uptake pump, seriously damaging the serotonergic pathways. This is where those of you doing research should be looking.

      • SSRIs all affect Sodium and Potassium, TRP and other channels. Many of their effects such as on the heart are better explained in terms of these effects.

        Finding an answer to the problem of PSSD or withdrawal is like drilling for oil. You can go by some theory as to where the oil is or should be or you can drill oil wells. The more you drill the more oil you find. It may well be if someone finds a treatment that makes a difference that we will then be able to work back to what must have been wrong to begin with.

        But it takes a lot of guts for someone who has been injured by a drug to try other things. It may be stupid to do so but the answer is likely to come quickest if some people take risks

        DH

        • I feel that it’s so refreshing to find someone like Brooks who is willing to share the most intimate of details about the experiment that he’s tried ON HIMSELF – so different to the way of drug trials by the pharma. companies. Maybe it should be suggested to the pharma boys that they should follow his example!
          Brooks – I admire you for your openness; after all, you could have done this and not shared it with anyone here but you decided that, by reporting it, you would give others the hope of a return to normality some day.
          I don’t think that we, the females of the species, view such problems in quite the same light as males do. Of course the lack of closeness etc. is felt by all but, when it comes down to the nitty gritty, a male’s ‘failure’ in that respect seems to be soul-destroying.
          I can only compare it to the experience of childlessness which seems to affect the female more than the male (in my experience anyway – as long as all works bar the recipe the male head copes quite well!) but that longing and’ emptyness’ can be fulfilled by fostering/adopting. The difference with sexual dysfunction, of course, is that NOTHING can replace that longing. I sincerely hope that there will be a breakthrough very soon.

          • Mary, thank you so much for your kind words, you have no clue how much I needed them, the other people on this commentary are a bit of a tough crowd and some of their pot shots were really starting to upset me. I was the Guinea pig for this treatment and decided to publish it bc I care about others who are affected. They are acting like I’m such a bad person, I could have come up with a potential treatment and never shared it with anyone. I know of at least one scientist who is developing a treatment (or cure) and plans to never tell anyone; i wanted to help. But after some of the abuse I have had to sustain it kind of made me start to understand his line of reasoning. Until your post I was really starting to become upset. Thank you

          • Brooks what you have done is an admiral thing you were extremely brave to tell the world your problem but even more brave to research and test treatments. We only know things because they are tried and tested otherwise we would never know anything. Its very hard to give up when you know there maybe answers there somewhere. I believe you can reverse many things bought on by treatment and I believe PSSD maybe one, its just finding out how. We are very lucky to have people like you who are willing to take the time and energy to look into this. Thank you for all you have done so far.

        • What do you have to say about this Doctor Healy?: http://www.theguardian.com/science/2016/jan/17/man-left-brain-dead-after-french-drug-trial-dies-in-hospital

          So one drug puts us in the mess and we take another one to take us out of the mess only to have other side effects?

          Doctor Healy, it’s the re-uptake pump functioning system that is damaged. If you want to bake a cake, you know you need 300gr of flour and 4 eggs, but who is going to tell you the exact amount of whatever drug will put you right as rain? God? I am highly amused that a man as intelligent and anti-drugs as yourself is under the impression that one fabricated drug will put right what one drug put wrong.

          Pinpoint the cause of PSSD and then start treating it. Your conclusion is ridiculous. Time to stop messing around with people’s brains.

          “Medical science is making such rapid gains, soon none of us will be well” – Aldous Huxley

          • Maeve

            I love your quote from Aldous Huxley but you’re wrong re the reuptake pump – this still works fine. The problem lies elsewhere

            DH

  7. Hi Maeve,
    I have been reading these responses, attentively.
    You took the words right out of my mouth.
    Why try something, when no one has no information of the harm involved?
    FSM may look harmless however, do we understand what these electrical impulses induce in the long run?
    Innocent people have already had their brains and genitals ‘fried’ : (
    Sorry, to use this expression however, the above statement is true!
    Once something has been damaged, and someone has had ‘lingering sexual dysfunction’, it is better to leave that individual alone.
    They have already had their minds and genitals castrated!
    This is their prison sentence.
    Why look for a temporary fix that is only going to leave that person disappointed?
    I understand why people go through this process.
    They are searching for what they once had, through other means,
    No MAN or WOMAN, should have to go through this ‘rite of nothingness passage’, alone.
    Unfortunately, there was NO SUPPORT back then and UNFORTUNATELY there is NO SUPPORT NOW.
    We were experiments back then.
    Why keep on experimenting on people that have been through so much?
    There is NO INFORMATION on the product or consumer information pamphlet, stating that it causes LINGERING SEXUAL DYSFUNCTION.
    If people want to try something that will give them some kind of pleasure, I have no right to judge.
    If it is going to harm someone, this is when I get very worried.

    • Carla, I’m really sorry to hear you have given up hope. I do feel there is some inaccuracies with your claims. If you look on the pamphlet for Prozac it does in fact state that sexual dysfunction can continue after discontinuation of the medication. As far as you saying that this is “PSSD suffers prison sentence” you are wrong. A lot of PSSD sufferers don’t deserve what they have been given, a lot of them only offense was trusting their doctors. As far as you saying that it’s best to leave the PSSD sufferers alone and there is no hope for the future, I don’t know how you can live with this line of mindset. There will never be an effective treatment if people are not willing to try potential treatments. I took a risk and used myself as the Guinea pig, because I care about helping others.

      • Can you explain to me how you have empathy to care about others if along with PSSD comes a crashed sympathetic nervous system, preventing people from feeling any emotions or feelings, or are we all experiencing this on different levels? I for one feel nothing whatsoever which is why all my relationships fell apart.

        • Interestingly, Maeve, I feel, that nowadays, I have more empathy for other people who are in a tough spot, than I ever did in my happy and healthy days before the stroke, when I was able to feel good. But, now that is only a “well thank heavens this person is worse off than me, my existence cannot be so bad” feeling, and, as with the so called Helpers High, I can feel superior to that person, which boosts my self esteem, which is rock bottom anyway.

  8. Since for me pssd started with gradual fading away of feeling(s), I am optimistic that once something is fixed it will similar way returning. I got something back after 1,5 years, I am not the same person, but a little better. For me gluten free diet, and some exersise helped. I hope you also get a little better, and find power to fight against.

  9. One of Dr McMakin’s authorised practitioners is based in Sandymoor. That’s about a 90 minute drive from Bangor, so crack on chaps, allocate some funding and get this one nailed, rather than waffled about.

    • Neuroplasticity – the brain’s way of tuning itself to meet your needs. You want a drug to interfere with this natural process? Is the damage SSRIs did to you not enough to make you say stop?

      • Neurplasticity is a very optimistic view, by people who have no disability at all. Think about it, does it make any REAL sense? A certain part of your brain is devoted to how you move your legs when you walk or run, another part operates your arm and hand, another stores you memories. You were born with those parts of your brain ready to do what they had to do. Why on earth would another part of the brain which was created to do something else, however insignificant, suddenly want to step up to the plate and move your legs forward one at a time, and help you remain upright whilst doing so? it does not make sense. The myth that a large part of our brains are unused is just that – a myth. When one part of your brain is totally wiped out , then the functions that that part of the brain controlled no longer happen, however nice it would be if some other part just picked up the slack.

  10. It is evident and very ‘crystal clear’ to me that we are all suffering in some way or another.
    We all have a different set of values and opinions.
    Some people may not want to try any other form of healing because they have most likely reached a stage in their life where they have already tried a lot of healing modalities in the beginning and have reached a conclusion that nothing seems(ed) to work.
    If people want to try something, we have no right to judge.
    I believe that everyone has that ‘glimmer of hope’ that eventually we will all heal, given the circumstance,
    We have to be realistic, also.
    Anyone who comes on RXISK to share their story is brave by putting themselves in front of the world and saying it how it is. We also have to keep in mind that there are many individuals also, suffering.
    If we all have compassion for what we are going through, there is no need to judge.
    I once had visions and dreams of healing, also.
    Just hasn’t happened.
    Telling someone to change their attitude is like telling someone to miraculously change their ill health to better health, by the ‘flick of a switch’.
    Many have been around and are wise enough to know when to be realistic.
    I believe in miracles however, I have been waiting a long time and yes, I still have hope.
    Loving someone does require some form of sexual intimacy.
    I think it is beautiful how someone can be with another despite having had the sexual pleasure taken away from them.
    Understand, that many when they come on here, come from a broken place.
    They are grieving and cope in many different ways.
    If you truly love someone, you will remain with them through the good and tough times.
    This is a true testimony of commitment and love.
    Please refrain from all judgement because we are all trying to do the best with what we have got.
    Many have tried so many different healing modalities and are left with residual medical issues.
    They did not choose the life they are in because they woke up one morning, out of the blues and said: I want to be this way!
    They are there because of a medicine that supressed some of its information.
    Some are trying so hard to live with what they have and I am certain that many have ended their lives because they are worse off than when they ingested the pills.
    If they had all the information, I am sure they would have drawn a line in the sand and declined the clinicians offer.
    We have to try to be very sensitive and try to demonstrate some empathy when someone is suffering.
    Attitude plays a major role in how we see ourselves and the world- I agree with this part.
    We have to understand why some people are in dark places.
    They didn’t have a choice.
    It is great when we look for solutions which will benefit many with medical ailments.
    What does one do when they don’t want to try anymore because they are just fed up with everything they have been through.
    I can understand that some people are financially not in a good place and have no support once they are ruined.
    We can sit here and judge however, try, if you can, to put yourself in their shoes and understand where they are coming from.
    Being realistic is sometimes a bitter pill to swallow.

  11. Who would want to take more risks especially, after everything they have been through?
    Sorry, I no longer gamble with my health, anymore.
    Who would want to go back to their death bed? No, thank you.

  12. I am a woman of 28 years old with PSSD (about 2 years) from citalopram 8 drops for 8 months (sexual dysfunction starts in the beginning of treatment for me). sorry for my English. I do not feel sexual arousal and real clitoral pleasure anymore. I think if I were a man, I would not have an erection. nevertheless, if I insist, almost unpleasantly, with manual stimulation, I reach orgasm, that’s the best part, but it does not leave me more satisfaction. I do not have the emotional blunting (fortunately). I still feel the emotions and I still have the desire to have sex and in fact I do sex, even if I do not feel physical pleasure anymore. when I, after days of suspension of citalopram, realized that I would not come back as before, sexually, that was for me the biggest shock in my life. I tried to kill myself, because I did not want to accept this injustice. Now I am sadly “abituated” at least a little, but the dream of my life, my number one wish in my life, is heal from PSSD before becoming old … 🙁 please continue research to find a care. Ps. I have normal testosterone levels, as well as all other hormones.

  13. Brooke, I am sorry you and others, including myself, are suffering in silence.
    Everyone, copes with circumstances differently.
    If we all had the same fingerprints, life would be so boring!
    Good on you for trying something that may benefit others and yourself.
    It takes a lot of determination and strong will power to take more risks.
    Risk takers go far in life.
    They respect others opinions, but are not afraid to think ‘outside the box’ .
    By all means, do whatever makes you happy.
    I’m just worried about your well being because you have already been through so much.
    We only live once and sometimes I forget what it felt like when I was in my ‘state of sheer bliss’. God I miss that feeling.
    I hope you, others and myself get those moments of pleasure back.
    You have one great lady by your side.
    I wish you both the very best.
    She is also fortunate to have you.
    I am a big advocate on HOPE.
    Please do not think that for one second that others cannot have this HOPE.
    Taking someone’s hope away is like taking their dreams away and saying that GOOD will never come out of an unfortunate situation.
    Kudos to you.
    I’m very sorry if I am unable to be as strong as you and take any further risks.
    Yes, I have failed myself in that department.
    I am weak : (
    Something good will come out of what you are doing even if it is baby steps at a time.
    Who said that a drop in the ocean creates ripple effects? The Jesuits, I believe: mmmmmmm could be wrong?
    See, you already have changed my attitude because I see you are not a selfish individual.
    You care about others and when you have this kind of mentality, only good will come your way. This, I truly believe.
    Good luck with your life, girlfriend and a bright future in finding a cure for PSSD.
    We could all do with some hope and optimism.
    That’s the kind of spirit that will get you somewhere.
    All the best, Brooke.
    Thank you for sharing your experiences with us.
    You may be one step closer to helping many who have lost faith.
    I wish I could give you a big hug.
    Love Carla

    • Carla, Thank you very much for your kind words and encouragement. I really needed to hear it. Few of the people on this feed I know are hurting and dont really mean the stuff they are saying about me. One thing I want to tell you (and everyone else reading this) that I feel can give you some hope of us figuring this out.

      Look at the history of the disease called Encephalitis lethargica. It is a disease that leaves people completely brain dead and left in statue like positions. There was an epidemic from 1915-1926. It was basically viewed as a death sentence. All the people could do was sit there and stare strait forward. They had to be completely cared for and couldnt even speak or think. One day a Doctor injected his patients with L-Dopa, the parkinson drug. It had dramatic effects and people were able to speak, walk, and most went on to live semi-normal, functional lives.

      Although this disease is unrelated to PSSD, think about how much more severe it was than what we have, and people were able to recover and be happy again. If its possible for them its possible for PSSD sufferers. We just need more scientific institutes to take this problem seriously and start directing tests towards finding out the cause so we can treat it. I know one day things will get better for me, and you too

  14. “All I ever wanted was to reach out and touch another human being not just with my hands but with my heart.”
    ― Tahereh Mafi, Shatter Me

    If we can do this simple act of kindness, Brooks, then we know we are alive.
    You go out there and show the world what you are made of, Brooks.
    Reach for the moon and let everyone else grab the stars.
    For you are made for this world and there will never be another you.
    Thank you, for never giving up.
    Love Carla

  15. It’s getting on for 19 years since I first took an SSRI. It’s about 18 years since I realised there was a problem and started the struggle, the research, the experimentation, the agonies of protracted withdrawal. It’s almost 7 years since I last took an SSRI and the devastating problems remain.

    The internet is full of anecdotal reports from SSRI damaged sufferers, but where are the formal studies? They appear to be few and limited.

    Where is the questionnaire survey of SSRI users to get some handle on the incidence level of PSSD and other problems?

    If reports are to be believed there are about 6 million users in the UK alone and many others who are ex users.

    If questionnaire findings revealed any kind of significant incidence level of PSSD, just a small donation from each of them would yield many millions of pounds to fund formal, rigorous, controlled research into the problem. If the studies were extended on an international basis, to cover the US, Canada, Australia, etc, the fund raising potential is enormous. Someone with right contacts, knowledge and credibility could make this happen. It would be awesome, it really would. The opportunity is there to be taken.

    • PCNG it does make you mad when like you said the internet is full of anecdotal reports yet they still nothing is done to find an answer or even investigate. Rxisk is one of the few places that does look into things and is trying to help. I’m even thinking right now that every country’s depts of health should have a pool of money set aside for conducting research into harms done by treatment. The trouble is that would be admitting there is a problem and as you know authority’s do not like to admit to anything going wrong. There are crowd funding scientific research websites though here’s one https://experiment.com/ .

  16. I think it’s really, really important to be open to listening, and really thinking about every possible way forward, in the uphill struggle to get some understanding about the damage that the SSRIs and other drugs can do. So, I salute Brooks – (your research reminded me of the film ‘Lorenzo’s Oil’ – a father with absolutely no medical knowledge, who set to, taught himself from scratch and found a remedy for his son’s disease – now used in mainstream medicine).

    But – it would be terribly sad if people like Brooks got discouraged by the more negative comments. Someone I liked a lot said to me once, when I was right down at the bottom of despair and hopelessness:

    ‘You may feel hopeless Sally, but you can’t make me feel hopeless too’.

    I’ve never forgotten those words – it’s imperative that we don’t let our own appalling experiences spill over and negate other people’s hopes.No one has a monopoly over suffering. Remember the effect that our words can have on other people (critical comments hurt). We’re all spinning around in the dark, often feeling completely isolated – which is why this new initiative – gathering information from every conceivable source is so vital. It’s a step forward, and might just jump-start all of us into contributing knowledge in a more practical way – there’s a limit to the usefulness of posting and re-posting our own terrible experiences.

    Be open and respectful and curious – and grateful to people who go out on a limb to explore something which may well add to a blueprint for help in complex withdrawal.

  17. Pharmaceutical companies, please do the research to find out why these drugs are harming people.
    If they are harming innocent people, this is not progress of medical science.
    No point hiding and hoarding all this information for yourselves.
    We would all feel better if the scientists tell us why it is causing so many medical issues.
    Please, stop keeping that information in your vault.
    Start giving people their power back, so that they can make better informed decisions.
    If it is about creating money for professions, then I am afraid mankind has got it all wrong.
    If science is creating so many medical ailments from medicines, then I am very sad when innocent people have to ingest more medicines to repair a problem that the medicine which was ‘deemed safe’, caused.
    Can one ever repair an old engine to its former glory?
    Can one ever make someone old young again?
    Medicines work on the same principle.
    They may fix something and create other problems, just to make money for the professionals.
    If you get it right the first time: “How on earth are professionals going to make their money?”
    Medicines make people live longer however, the quality of life will never be the same.
    There will be a day, when some medicines will not exist and people will rely completely on natural alternatives.
    Even people who have suffered from meningitis, strokes or other neurological disorders, have survived without medicines and are most likely better off than if they had ingested another medicine to cure what the medicine had induced in the first place.
    Debate and take me on………………………!

  18. I am highly skeptical about FSM having anything to do with the subjective improvement in Brooks’ PSSD symptoms. In my opinion the more likely explanations would be placebo effect in all of its forms, extra stimulation effect due to the current, which might not always be a good thing in the long run or just generally feeling better for accomplishing something like Brooks’ did by taking part to this interesting trial. When it comes to artificial stimulation we know that taking stimulant-drugs, for example, can have an impact on PSSD symptoms for a short period of time, which is by the way exactly what the industry-side uses as a marketing speech for more drugs (bupropion, methylfenidate etc.) to desperate people affected by the sexual adverse effects of SSRIs and like. Of course, taking more of the same (with different packaging) will only lead to further CNS damage. Sorry if I ruined the hope of some people. Obviously I wished this was a solution to PSSD but god that would be too simple to be true. All the best for every PSSD co-sufferer.

  19. Brooks needs encouragement, support and hope.
    He is young, full of enthusiasm and generally speaking, high in sprits.
    We can all sit behind our screen and be negative however, this is not going to help Brooks or anyone, for that matter.
    Brooks, needs to take back his power and have someone in the legal profession speak on his behalf.
    Something unforeseen has occurred and it has impacted his lifel, in a very big way.
    Feel his pain and understand that he wants to heal the best way he can.
    I hope Brooks and all the other people who are have PSSD, come forward in a court of law and state their case.
    This will hopefully prevent big pharma from causing unnecessary harm to innocent individuals.
    By having a voice, they can finally be at peace with what has happened and move forward the best way they can.
    We can’t tell Brooks what to do.
    This is his body and he has choices.
    He is young and wants to explore what FSM and other treatments have to offer.
    I care about Brooks and many others and venturing into the unknown requires courage and determination.
    The cells in our body are quite remarkable especially when it comes to our health.
    Repair and regeneration, will never be perfect, however, healing can slowly and surely takes place when we feed our minds with positive thoughts- this I believe.
    Brooks, is on his journey.
    We are on ours.
    Let’s wish him luck and hope that nothing unforeseen happens to him or others with this FSM treatment.
    We can give him the best advice we can however, we should try to refrain from putting a dampener on this situation.
    At the end of the day, Brooks and many others, will most likely tell big pharma where to go and take the ‘bull by its horns’ (excuse the expression ) and explore natural alternatives to improve their PSSD.
    Taking responsibility for our own health is a blessing because we instinctively know what is the best for our well being.
    Let’s just be sympathetic and compassionate to his needs.
    I hope he gets all the support, encouragement and professional advice on how to heal, without having to deal with more problematic issues from big pharma.
    Brooks, will instinctively know what to do.
    Wish him and others well and help him to make the right choices with the right choice of words.
    Lets lead gently and allow others to follow………………………………………….

  20. I’m sorry I caught onto this conversation so late. I am a PSSD sufferer of more than 7 1/2 years. I, too, and determined to find a cure and do believe that something such as FSM can have potential. Although I am not fully familiar with it I am familiar with an Alpha Stim (I own one) and with Rife Machines, somewhat. I was recently diagnosed with Lyme Disease with several co-infections and this has derailed my attentions somewhat. I do believe some of the symptoms overlap and I have had Lyme for about the same amount of time as the PSSD so I wonder how much cross over there is. My primary co-infection is Babesia which has a lot of nerve/neurological symptoms. (Since Lyme is an underdiagnosed disease that is dismissed by most doctors I wouldn’t be surprised to see a lot of PSSD sufferers with both.) After taking Prozac for many years and getting PSSD I have since avoided pharmaceuticals and am currently treating my Lyme with homeopathic and naturopathic treatments. A good portion of these treatments are not chemistry based, but rather energy (physics) based. I have come to learn that just because I don’t understand it and it is not typical of Western Medicine (which got me into the PSSD problem in the first place) doesn’t mean it’s not therapeutic. I am seriously contemplating using frequency treatment for my Lyme and would certainly be interested in looking into doing the same for PSSD. How would I go about getting the frequencies that would be recommended for PSSD? I live in the suburbs of Chicago and would be VERY open to pursuing FSM treatment and reporting back.

  21. Interesting find here. I am sitting here with an alpha-stim on my head that I just got to treat my relapsed severe depression.
    No way am I ever nearing another SSRI due to PSSD. I took lexapro for 2 years and was left nearly completely anorgasmic and with penile desensitization. Sex is difficult and almost boring now. It certainly isn’t what it used to be and I want it back.
    I have taken no depression medications for 4 years and the PSSD is slowly worsening even off the drugs.
    I am a 53 yr old male who is taking testosterone injections also, but it does not help with sensation or orgasm.
    Since I am in the medical field I have a good understanding of much of the pathophysiology and am willing to experiment for my good and others.

    Brooks thank you for sharing and trying. For the ones who keep telling everyone to stop trying to find a cure, I ask you to refrain from discouraging those who WILL try. I sincerely understand why you feel the way you do, but it is detrimental to those of us who refuse to stop trying. Oh and by the way, the mind is powerful at healing itself. Telling yourself something over and over again that you may not even believe in, can reprogram the brain to change. Ever hear of brainwashing??
    That is not to say that any of us will ever heal. But I can promise you that doing the same thing and expecting different results is the definition of insanity. At least tell yourself you will get better over and over again and maybe your brain can heal a little. Your emotions effect your entire health.

    I have no idea if alpha stim will do anything, but I am willing to be the g-pig. So I will let you know if anything happens. Turn on the electricity baby and lets see if we can get this party started back. 🙂

  22. Hello, I’ve tried some stuff for my PSSD: dopamine agonists, buspirone, bupropion, yohimbine, but these things didn’t work. Have had PSSD for 1.5 years now.
    Honorable Dr Healy, have you tried prescribing GHB for your patients with PSSD? GHB has very good reviews among people with PSSD, since, reportedly, it’s an extremely effective sex drive booster even in healthy people. Would You consider prescribing or testing it?

  23. I want to thank Brooks and Rxisk. I have just found this and as I read an emotion is evoked and I am in tears. I am not alone. I am not the only one. There could be hope? And someone is trying. I am now 61 I have suffered from PSSD since shortly after beginning treatment with Effexor XR after being diagnosed with complex PTSD and ADD in 2006. I had suffered with these for many years. I was never told by the person perscribing it of any of the side effects for this med. After graduating up in dosage I was on 300mg daily for approximately 6 years. I feel it and the resulting PSSD were responsable for the deterioration and collapse of my marriage. If I had known then, if I had any idea of the horrable affects I would have never ever began taking the Effexor. It is 3 years now since discontinuing the med. I have not had an erection since the PSSD began, with little or no sensitivity and this has not changed even a little bit after having stopped taking it. I have felt and been described by those who knew me previously as hollow, emotionally void. There is so much more! I have lived with a lot of what each person sharing their story here describes. Thank each and everyone of you! And those in support of us. I approached the original psychiatrist and a number of other doctors about the PSSD and each of them said they had never heard of it. I have tested my T levels and just about everything else and they are fine. I would be willing to volunteer as a g-pig and try, it may be to late for me but maybe it will help others. I am so glad to see that some of this has finally come out.

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