Almost Full Recovery From Post-SSRI Sexual Dysfunction

Hi. My name is Jheronimus. I’ve almost recovered from a severe manifestation of TMS known as Post-SSRI Sexual Dysfunction (PSSD). I originally was planning on creating an account and talking about my recovery after I fully recovered, but I am often over 90% recovered (as much as can be realistically inferred by a percentage, anyways) many days now, sometimes perhaps as high as ~95% or so, but my last remaining symptoms, which I’ve been battling since the beginning of this year, have a decent amount of variation, so this figure is often inconsistent.


I believe I am probably the only person on this website to mention this particular disorder; it is not well-known, definitely much less known than other severe manifestations of TMS such as MECFS, Fibromyalgia and Long Covid, but I do believe passionately at this point that most or even all people who report having this condition, in fact, have a severe form of TMS. The hallmark of this condition involves myriad of sexual symptoms, some quite strange, such as anorgasmia, premature or delayed ejaculation and genital numbness, others more commonly seen in other conditions, such as erectile dysfunction and libido loss. However, in addition, most ‘severe’ cases of PSSD also report having various neuropsychiatric, cognitive, neurological, and immunological complaints. In particular, many report additionally having anhedonia, DPDR, aphantasia, emotional blunting, memory issues, insomnia, and various other symptoms of that nature. In some cases, neurological complaints such as various forms of neuropathy are heard of. It seems like almost any symptom can occur with this condition, very much like Long Covid in a lot of ways, and I’ve even met Long Covid sufferers who described similar symptoms to PSSD. In most cases, PSSD occurs after discontinuation of SSRI, SNRI, and TCA antidepressants, but I’ve heard people saying an antipsychotic gave them ‘PSSD’ as well, which is probably a bit of initial evidence that this is, in fact, a form of TMS. There are additionally several other medication categories that are associated with similar conditions to PSSD, but work completely different than SSRIs, which, in retrospect, is also a hint that this is TMS. Despite this, this is the only post that I’ve ever seen anywhere that suggests PSSD is TMS. When I first got sick, I tried seeing doctors, but as with many people, I quickly discovered that doctors were not going to help me. I had a lumbar puncture, an EMG, and a few MRIs, and nothing came back. My condition was dismissed as ‘psychosomatic,’ but they did nothing to help me.


In my case, the onset of my illness was in August 2022. I had a pretty rough childhood and one of my parents was a chronic alcoholic and was abusive. I was drugged for the first time early in childhood for ‘anxiety,’ but most of these early experiences with psychotropic medications were temporary. It wasn’t until my mid-late teens that I would get on an SSRI and remain on it for years. Following Covid and months of lockdown, I saw a psychiatrist who threw an insane amount of medications at me. Despite not having a history of psychosis, she put me on Haloperidol. I was not well versed in psychopharmacology at this time, and was not aware of the issues associated with that medication. This doctor then prescribed two more medications for side effects of Haloperidol, but didn’t say what these side effects were. It wasn’t very long until I was on 8 medications. In total, this doctor prescribed 13-14 different medications in a two month period, right before I got sick. I did not react well to many of the medications (I developed akathisia and dystonia on Haloperidol and couldn’t sleep, but was not aware it was causing these issues, since I was not told about them), and I was torn off practically all of the medications I was on with little to no tapering. I was also on Effexor at the same time, which despite being a very difficult drug to get off of, the psychiatrist had no clue how to get me off of it. Withdrawal from Effexor was presumably like getting off of an opioid (I have no experience with opioid withdrawal, but descriptions I’ve seen of it resemble withdrawal from Effexor in many ways, hence the comparison to it). In retrospect, I believe this series of events caused a ‘perfect storm’ that triggered my severe case of TMS. I was most likely already teetering on the edge of developing some form of TMS, and all the insanity with the crazy psychiatrist, the polypharmacy, lack of tapering, and the stress I was under, combined with my previous trauma and adverse experiences, were what ultimately brought it to surface. I think I likely would’ve gotten some form of mind-body disorder eventually, no matter what happened, but the ‘treatment’ I got from this supposed professional made sure that something really severe arose. Whilst I acknowledge my condition was a mind-body disorder in all likelihood, I still should not have been treated this way by an alleged professional and should never have been placed on the medications that led up to my illness. My admission of TMS does not absolve this particular psychiatrist of wrongdoing; it is abundantly clear that she fucked up. Unfortunately, many people wind up in similar situations due to a completely broken medical industry, and worse yet still, most of these people do not realise it is most likely TMS they are dealing with, and will waste years of their lives trying to find a solution when the solution is already within them. Whilst I agree that some people may benefit from medications and psychiatry, I do think diagnoses are too readily handed out and psychotropic drugs are as well. Some people, like Schizophrenics, may need psychiatric treatment, they may need court-ordered medications and depot injections, they may need hospitalisation, even for years, but there are simultaneously many people who started out with minor issues, like mild depression or anxiety, saw a psychiatrist, were put on SSRIs, and became suicidal or aggressive from them (this is a side effect of SSRIs in particular), and then were prescribed more drugs for side effects of the drugs they were put on, and most psychiatrists do not understand the possible side effects of the pills they prescribe well, so they do not see the correlation when a previously stable person with anxiety suddenly becomes increasingly suicidal after being put on some of these medications; they respond by putting them on even more drugs, when they should actually be taken off of them in cases like that. There is a lot of abuse and harm in psychiatry, especially biological psychiatry, and even though I consider PSSD to be a form of TMS, this does not mean mental health professionals get a free pass. Psychiatry has a very dark history and has a history of being used for authoritarian and oppressive purposes, it often can be used as a political tool to suppress people (as it often was used in the Soviet Union), and I think these things should be okay to talk about. Legitimate criticism of psychiatry (these are all legitimate criticisms) is not the same as being a scientologist or being anti-science, although often it is conflated with both of them.


I originally had roughly 50 symptoms, some likely developed a bit later, but by the end of 2022, I had a plethora of sexual symptoms (basically everything you can think of, including what I mentioned above), severe insomnia, akathisia, memory issues, DPDR, aphantasia, anhedonia, emotional blunting, neuropathy-like symptoms in my legs, Raynaud’s Syndrome-like symptoms in my feet, urinary retention, chills, cold sensitivity, asthma symptoms, probably a lot more I am leaving out. I didn’t know what was wrong with me until around two months after I first started having unusual symptoms, when I first read about PSSD. Like most people, I was not previously aware of it. Reading about it caused me to fall down a rabbit hole and become obsessed, and I believe that I severely worsened due to it. I think it is actually possible that, had I not found a label to apply to my symptoms early on, I might’ve naturally recovered within a few months from my issues, but the revolving door of obsession and fear, combined with a growing sense of victimhood and learned helplessness (which, as users may know, is extremely prevalent in online chronic illness communities, which I became involved in), resulted in me becoming stuck. I remained more or less in the same state until around 7 months into my illness, when I decided to try a course of ECT. My anhedonia (I never had anhedonia until I got sick, most of the symptoms I manifested I never had previously) had reached the point, in particular, that I was in a near-catatonic state. I had no desire to eat and could not sleep, perhaps spending weeks at a time with either no sleep at all, or maybe an hour or two a night. I would spend the day staring at the ceiling all day or pacing frantically. It was difficult to get access to ECT, as it is quite gatekept (I pretty much had to feign being suicidal and depressed to get access to it). However, within a week of ECT, several of my symptoms were in the process of fading away, within another week, the anhedonia, emotional blunting, aphantasia, much of the DPDR, and perhaps even some dysautonomia-like symptoms like urinary retention and chills, cold sensitivity, and even POIS, were seemingly gone. All of these symptoms remained gone and never came back. However, I was quickly tapered off of ECT (I think I should’ve received a bit more, as I responded extremely well to it and very quickly) and although I rate this course as successful, it only resulted in perhaps ~40% of my total symptoms disappearing. I was still left with all my sexual symptoms, akathisia, painful neuropathic symptoms in my legs and feet, my insomnia was still bad, I still had some memory issues like problems with forgetting words mid-sentence. It would not be for another year that I would first hear about TMS and start looking into it.


I first became aware of the concept of TMS around May 2024, but at the time, I was focused on ‘fixing my gut’ and detoxing, and wasn’t extremely convinced about it at this point. I still mostly thought that my issues were the result of the buildup of toxicity, pathogens, dysbiosis, etc. I decided at the beginning of August 2024 to do the Lightning Process, as detoxing was not helping me at all, despite spending several months taking CDS (Chlorine Dioxide Solution, a form of Chlorine Dioxide, which is often touted as a miracle cure for everything in alternative med spaces online). I think the Lightning Process opened up the ‘second phase’ of my recovery journey. For the first time ever, I started noting improvements in my remaining symptoms. My premature ejaculation went away and many of my sexual symptoms showed signs of improving or windows of significant improvement. I started experiencing windows in the severity of my neuropathic symptoms. Occasionally, at certain points of the day, especially late at night, these symptoms would often significantly improve or even go away completely.


However, despite my improvements, I still was very impatient with my progress. I was hoping the Lightning Process would allow me to recover in three days! If other people could recover in a few days with it, as they often advertise, why couldn’t I? As a result, I went back to detoxing, whilst still trying to juggle the Lightning Process on top of it. I heard people advise against pursuing physiological treatments whilst doing brain retraining, but I didn’t believe them. In retrospect, I think gradually abandoning the Lightning Process in favour of becoming obsessed again with detoxing my gut, which had already failed in the past, significantly delayed my progress. By October 2024, I basically had stopped doing the Lightning Process in any regular basis. By the end of the year, even though I improved a lot, I was taking extremely high doses of MMS (another form of Chlorine Dioxide), doing MMS enemas almost daily, doing turpentine protocols, taking loads of binders and other supplements, including even taking borax in capsules and swallowing them. I was extremely focused on detoxing, and I think I was shooting myself in the foot. I started attributing my improvements to detoxing (even though many improvements started before I went back to detoxing again), instead of brain retraining. I actually think most of the substances I was taking were not actually doing anything, I think MMS helped me a bit, but eventually its usefulness began to wear off, and, finally, after a failed 72 hour dry fast in April of this year (I completed it, but it wasn’t useful), I decided to stop taking everything, and did the Lightning Process course again (I was so out of practice at this point that I decided to just repeat it) in May.


I think starting back up with the Lightning Process got me back into the proper mindset again, and I started improving once more, but my improvements were definitely not as rapid as the first time I had done it (I also had less symptoms when I repeated it though, so that could play a role). It has been a bit over three months since then, and I’ve also tried integrating somatic tracking and outcome independence strategies, recently I decided I would try the JournalSpeak method, as the Lightning Process doesn’t deal adequately with emotions and trauma (one of the pitfalls of practically every brain retraining programme that exists). I’m also looking into EFT Tapping (particularly the Gary Craig version of it) and am trying hypnotherapy. I’m hoping that a combination of these will allow me to sail into truly full recovery, and I do feel like I am often almost there, I have windows of sometimes ~95% recovery at this point, but my remaining symptoms (I still have a degree of anorgasmia left, my sole remaining sexual symptom, plus intermittent tingling and coldness in my legs and feet, but it is not 24/7 and hasn’t been truly like that for a while now, and I also have some lingering sleep trouble, which in the past few days has actually been surprisingly good, and occasional asthma symptoms, usually at night or after eating). So, out of an original 50 or so symptoms at one point, I have maybe four symptoms left, and they are only partially present for the most part or only present at certain times of the day. That being said, most of these remaining symptoms are also the most disturbing to me, and it seems to be true in most cases that the TMS symptoms that someone considers to be the most disturbing ones, are the last ones to go away.


I’ve also done a bit of coaching, and in particular, I saw a coach from the Pain Psychology Center. For whatever reason, however, after around a month of working with me, they decided that they were ‘not qualified’ to work with me, which I find pretty disconcerting, as I have a long history of traumatic experiences and also have been rejected by people a lot in the past, and knowing that history, they should not have decided to throw me to the wolves like that (even though I also have a regular therapist, who told them he doesn’t see any safety concerns with me). They requested a release of information for my regular therapist, and then used information from his records (they found out that I had a suicide attempt almost four years ago, before I even got sick), and used it to say they couldn’t see me anymore. Considering I gave them a non-insignificant amount of money for their sessions, I find that very disappointing. I do not think I ever needed coaching, as I know pretty well at this point what I am doing, but the feeling of rejection, which I’ve felt many times in the past, makes me wish I never even reached out to them. It is furthermore disappointing, as Alan Gordon founded the Pain Psychology Center. This experience makes me believe even more strongly, that this journey is one you mostly need to do alone and learn by trial and error. After all the health protocols and scams I’ve been the victim of (I mentioned having a lot of previous experience with the alternative medicine community), this happening to me doesn’t make me feel particularly great. The whole experience did not feel particularly trauma-informed. Even though I strongly believe in TMS at this point, and think focusing on it is truly the way out, I think experiences like that with the coaching can colour people’s entire perception of TMS pretty negatively, especially if they’re new to the philosophy, as it seems that a lot of coaching in general does not actually want to help people, they want to profit off of people’s suffering whilst not offering a tangible solution. I feel like they just want to have clientele who have ‘easy’ TMS cases, such as depression and anxiety or minor sleep disturbances, as most severe TMS cases tend to have previous trauma, usually ACEs, and sometimes have had previous suicide attempts. I think it is very gaslighting to dismiss this section of TMS patients. I feel like they were eager to use my previous history with psychiatry (which was also several years ago, I do not have anything to do with these doctors anymore or their ‘treatments,’ and haven’t been suicidal or hospitalised in years, so their concerns about me were basically baseless and my main therapist agreed) as grounds to say they were not qualified to work with me, even though they already took my money, and I find that hard to just shrug off, especially since medical malpractice and negligence were one of the main triggers (not the only trigger) of my TMS, and it feels dismissive. They tell people to stop identifying with labels (which I agree with, I do not identify with ‘PSSD’ anymore), but will use psychiatric labels from years ago to say they cannot work with clients (hint: most severe cases will have these labels somewhere in their history, so they’re effectively stating that they can’t work with most severe TMS clients). It’s hypocritical behaviour, and although it sort of detracts from this post, I wanted to include this recent experience here.


Anyways, sorry for the length of this post, but there was a lot to mention here, and I still didn’t mention everything. My story is extremely complex and also unique, as I’m the only ‘PSSD’ case that I know of that has almost recovered taking a mind-body approach (even if I occasionally benefited from other things as well at various points, I still believe brain retraining was the biggest driving factor), and I truly believe TMS applies to PSSD and probably most other drug-induced disorders, such as Post-Benzo Syndrome (a form of Post-Acute Withdrawal Syndrome) and possibly even ‘Floxed’ victims. I’m open to whatever suggestions people may have, as obviously I want to turn that 90% into a 100% finally. I did not want to post this under ‘recoveries,’ as I am not fully recovered, and don’t want to advertise myself as truly fully recovered when I still have some recovery left. If someone thinks it is best to move it, I won’t argue with it, but I thought it would be better in this subforum at first.

 

I am so sorry to hear of your experience with them - sounds awful, so frustrating and deflating! With regard to my own experience of mind/body symptoms, I have to say that I'm inclined to agree with you about not needing coaching and doing it alone and learning by trial and error. Having already spent a lot of money on coaching from one of the coaches at the Pain Psychology Centre (PPC) maybe you will be of the view that you don't want to give anyone from there a penny more than you've already spent (and it would obviously be more than understandable if you felt that way) but, just in case you're interested and you're not already aware of it, one of the coaches from the PPC has co-authored a PRT workbook (which I'm currently doing and am actually finding very helpful for me personally)... you can see my postings and thread giving some details about the workbook here https://www.tmswiki.org/forum/threads/the-pain-reprocessing-therapy-workbook.30102/ (However, no need to comment at all in response to this, especially if it's a case of you'd 'rather stick needles in your eyes'!)

Wishing you all the best - and welcome to the forum, plus thank you for posting up your story.

 

I just kind of feel that coaching for most things is kind of a scam or scam-like in many ways. I’ve had this view for a while, and some of these views are also affected by my experiences in other communities. I originally found out about this condition and started trying to find people who claimed to have it, some claimed to have had it for 20 years. It very quickly deteriorated into me being in chronic illness communities full of toxic, angry people who shot down the idea of recovery ever being possible. For a while, I became like that too. In between my ECT course that was the first thing that helped me and finding out about TMS, I almost did completely nothing to help myself (I did try one crazy supplement protocol that was unsafe, that I am now very much opposed to). Even after first being told about TMS and starting to read into it (I never completely dismissed it, unlike many people), I still fell back into the physical detoxing and ‘fix your gut’ rabbit hole, which got me stuck again. Most of the alternative medicine communities are very much similar to mainstream medicine, they both sell shit and want people to take the things they tell people to. They claim (in various altmed Telegram groups) that they do not have ties to supplement makers or ‘holistic’ health providers or influencers, but many of them actually do make money promoting various supplements and using affiliate links. One of the people who originally ‘helped’ me in one of these groups early on (it was a CDS; Chlorine Dioxide Solution group on Telegram, I mentioned this substance briefly in my story), turned out to be selling EMF energy zapper devices on the side but never disclosed it. The problem with these groups, is that they do not believe in TMS or brain retraining, and they do not push back against what anyone says. If you say you have a symptom, no matter how mild or easily explainable it is, they’re going to tell you to ‘fix your gut.’ They claim fixing your gut issues solves everything, but I’ve seen first-hand that a large amount of the people in their communities actually just have a form of TMS and do not benefit from radical gut detoxing, but they will never accept TMS, so most of them remain sick, bouncing back and forth between various supplements, substances, diets, and protocols, with no end in sight. The people in these communities are, as I said, very much against the concept of TMS and even that of FNDs (which is almost the same thing). They think everything has some sort of direct physiological cause, they completely ignore that the mind influences reality. They view the human body as like a type of machine that simply needs to be repaired, it doesn’t need any other interventions. Well, this approach is wrong, and it explains why most of the people in altmed communities are still sick, despite many having tried dozens or hundreds of things over the course of years. When you talk about the mind-body relationship to them, they become very culty and often try to get you ‘excommunicated’ from their community. A lot of chronic illness-related communities online gravitate heavily to basically being cults, where the main belief is that no one ever recovers, and if someone claims they did, they are ‘lying’ or had ‘depression’ or a mental illness and recovered from the mental illness they had, and never were actually physically sick to begin with. They absolutely hate people who recovered, especially those who did it mostly or predominantly by taking a mind-body approach.

As for the Pain Psychology Center, I think it ties in here a bit, because, as I mentioned, I’ve been the victim of scams before. I don’t think they’re legitimately a scam, and I know PRT is generally well-regarded, but I’ve also seen several Google reviews of them that echoed points similar to mine; they take people sometimes and after giving them a certain amount of money, make some sort of excuse and run away, throwing the client to the wolves. In my case, I know what I am doing pretty well and am (hopefully) at the end of this journey, so it didn’t have much of an effect on me, but I still feel rejected and dismissed by them. I don’t really see a legitimate reason for them to do what they did, and it feels gaslighting for them to make this decision based off of a suicide attempt that happened years ago. Have they never dealt with severe TMS cases before? As I said, many or even most severe TMS manifestations have a history of significant trauma and often have had suicide ideation and attempts in the past. If they’re going to dismiss people due to that, they should put a disclaimer saying they only coach ‘mild’ TMS cases like depression or anxiety, where the likelihood of clients having severe trauma is less pronounced.