Por favor se vc estiver sofrendo de PSSD junte-se a nós nessa petição para conseguirmos alcançar 5000 pessoas prejudicadas pelo uso de receptadores de serotonina.
Se caso vc for do Brasil, nao mencione isso.
Mais informações podem comentar aqui
Link da peticao👇
I don't have the sexual symptoms of PSSD, but I do have anhedonia and emotional blunting.
Is it generally recommended to quit all substances, including nicotine and caffeine, while trying to recover? Has anyone noticed improvements after stopping them, or does it not seem to make much difference? Substances don't have euphoric effects to me whatsoever yet I still do them because this anhedonia causes horrible inner restlessness.
I'm interested in both personal experiences and any evidence or recommendations people have come across.
The fact that we are able to suffer with what we are going through means we haven't lost ourselves. We still have our old selves, even if it is small. We need to hold onto that as much as we can and not let fear and doubt take over. Even if the medication has muted us we are still here and alive. If our emotions got completely 100% muted our souls would not be suffering, we would not be on reddit helping each other out. We need to hold onto our inner selves as much as we can and we will get through this. We can still have real brief moments, even if it is only as small as a mustard seed. Please hold onto the small real things we have left. 🌱
I made a painting that I didnt realise was a reflection of the ssri medication and I posted it on instagram. I written something hopeful underneath that i think will help us. I try also to spread awareness on PSSD there too. My name on there is anyahgrace22
M26 — Long psychiatric history, OCD, SSRIs, possible PSSD and emotional blunting
I’m a 26-year-old male with a psychiatric history involving OCD , depression and anxiety.
I’ll try to summarize my story as clearly as possible.
I have a complex psychological history. When I was around 14, I began experiencing same-sex attraction and intense internal conflict related to my sexual orientation. At the time, I felt ashamed, depressed and deeply isolated because of it.
At 15, I decided to talk openly with my parents about these feelings. Initially, their reaction seemed neutral, but over time it became much more negative and emotionally invalidating. Since then, I have never really felt psychologically safe discussing my sexuality openly at home.
As a consequence, I progressively developed severe anxiety, shame, hypervigilance around sexuality, and obsessive symptoms. My OCD initially revolved around homosexuality-related obsessions and rumination, but over time it evolved into full-blown contamination OCD and other compulsive patterns.
Looking back, it often feels as if my psyche developed OCD as a maladaptive defensive mechanism to suppress, control or hide thoughts, emotions and aspects of my identity that I perceived as unacceptable within my environment.
I started seeing a child/adolescent psychiatrist and psychologist when I was around 15–16 years old. I was prescribed sertraline (Zoloft), which I took from approximately age 16 to 19, reaching doses around 150 mg.
Unfortunately, the public psychologist I saw did not really take my sexual orientation struggles seriously. She basically told my parents that I simply needed to “grow and change,” which was very painful and invalidating for me.
School was not a particularly supportive environment either. I often felt different, weaker and emotionally disconnected from other boys. Fortunately, I loved studying and school performance became my refuge. I achieved very high grades and focused intensely on academics.
At 19, I was discharged from public psychiatric services because I was doing somewhat better with anxiety and depression and had completed school. I gradually tapered and discontinued sertraline.
However, about six months later, I relapsed and had to start treatment again with a private psychiatrist/psychotherapist. Over the following years, I was prescribed several serotonergic medications, including sertraline again, paroxetine and venlafaxine.
These medications helped partially with anxiety and mood, but they never really resolved the OCD.
After paroxetine, I developed severe sexual side effects that persisted during treatment and even after stopping the medication. That experience made me begin suspecting PSSD or some form of long-term serotonergic dysfunction.
I told my psychiatrist that I wanted to change medications because of the sexual side effects and emotional flattening. I was extremely frustrated and told her that I felt antidepressants may have caused more harm than benefit in my case, especially considering how young I was when treatment started and how little I had been informed about possible long-term side effects.
Her response was that I was becoming “paranoid” and irrationally convinced that doctors had made me sterile.
I’ll let you imagine how invalidating and upsetting that felt.
After that, I decided to switch drug class and started clomipramine (Anafranil), mainly because it is considered more effective for OCD. I’ve now been taking it for about three years and I’m currently on 75 mg.
Ironically, despite being a strong serotonergic drug, it is the only medication that helps my OCD without making me feel completely emotionally dead.
Still, over the years I progressively developed symptoms that now make me strongly suspect PSSD or some broader long-term serotonergic dysfunction.
Main symptoms:
Another important factor is that I still live in a conservative environment where I still don’t feel comfortable expressing my sexuality openly.
A few years ago, things seemed to be improving, but now the right-wing government is contributing to a climate of hostility and suspicion toward minorities and people perceived as different.
At this point, I honestly can no longer understand how much of my condition is caused by OCD/depression and how much may instead be related to long-term antidepressant exposure.
Sometimes I’m even afraid that I may still be using serotonergic medications to treat symptoms that were partly caused or worsened by serotonergic medications themselves.
Recently, I changed psychiatrist. Fortunately, this new doctor actually listens to me and does not dismiss everything I say as irrational. I also underwent a course of TMS/rTMS with him, which helped significantly with OCD and slightly improved my emotional responsiveness as well. Unfortunately, the full benefits only lasted a few months.
My current goal is to gradually taper clomipramine and eventually undergo another TMS cycle in the hope of managing OCD without relying entirely on medications that may be worsening emotional and sexual symptoms.
I really hope I can eventually recover at least part of my emotional and sexual functioning.
At this point, I would genuinely appreciate hearing from people with similar experiences.
Thank you very much to anyone who read this.
My friends, this is another chance for you to directly influence PSSD becoming more mainstream & accepted in the academic field.
Author Gretchen Watson, PhD is researching for her new book: "The Prescription Affliction: Why We Overmedicate Young Minds — And How to Stop It."
She is seeking firsthand stories about what happens when normal childhood distress, behavior, grief, or immaturity is medicalized and given a psychiatric diagnosis followed by drugs.
Stories may be shared anonymously. No identifying information will be included unless you specifically request it.
If you are interested, reach out to Gretchen at: gwatsonphd@gmail.com
(This post copied from the Medicating Normal X page)
42F I've had PSSD for about 19 months! I started to get pretty regular high libido (mentally) windows around ovulation 5 months ago would last about 3-5 days and now the entire last month my body started to give me physical libido along with this even outside ovulation! ( I don't have numbness, just lower internal sensation) intensity still fluctuates depending on where I am in my cycle and yes I'm beyond thankful for these improvements, however I still struggle daily with the anhedonia...somedays it feels mild some moderate but it's always present and life feels so gray and lack-luster still! I have no zest for life! no anticipation, no excitement and its hard to parent my kids this way and keep up with friendships! I know i should be thankful to have ANY improvement , but having anhedonia makes it hard to even appreciate that! I'm partially just looking to vent, but if anyone has any advice or hope for me I'll take that too!
In also still have pretty bad insomnia as well 😔
For those that dont know Telehealth is the company behind Hims & Hers the online pharmacy that uses celebrities and tiktokers to advertise and sell ssri antidepressants.
I had the thought of would it be possible to sue Telehealth (Hims & Hers) and maybe even the paid celebrities for not informing people about PSSD. I ran this idea through gemini ai and it said yes it would be possible. I would post what ai suggested but the moderators of this sub consider it "ai slop" and are against it.
The idea behind this is not to win a huge settlement (sure it would be nice) but to bring more awareness to PSSD. Make it a ridiculous huge class action lawsuit against them to grab MSM headlines.
I know its just a thought figured I would put it out there to see what others in the community would think. Make it a think tank of potential possibilities.
Welcome to the Weekly Open Discussion thread! This is your place to ask quick questions, post memes, or leave one-sentence comments that might be too short for their own posts.
Please follow the subreddit rules when participating in this thread. For posts related to suicidal thoughts or if you need emotional support, please use the Monthly support Requested and Venting, Thread.
Just wondering.
If you’re someone who has erectile dysfunction but ’normal’ results on penile ultrasound - I recommend getting a cavernosogram done! Mine ended up finding a leak, and I have an upcoming procedure to embolise some of the problematic veins. I’m still not sure what the connection is between SSRIs and venous leaks, but I never had any issues whatsoever with sexual function before taking an SSRI. In any case it’s worth discussing with your doctor!
Hello everyone,
*THIS IS NOT JUST ANOTHER PETITION*
The amazing Kim Witzciak recently launched a website serving as a petition for those with PSSD (and other SSRI injuries) to sign and document their experiences of harm with these medications.
It serves as a central place to show the volume of people being injured by these drugs. To convince those in power that these injuries are devastating a massive population size, deferring to Reddit groups won’t cut it/isn’t official enough. As such, this petition will be the MAIN SOURCE of reference when used to show the people we need to convince this is ruining/ending lives.
Please sign this, mention your experience and age if you can!!
We have SUCH power in numbers if we can all band together!
I don't say that all the emotions came back. Im just saying that, I don't feel that bad anymore. I mean, there's some spark I can feel now. Or a candle light. It is still something. I know life feels bad enough to you, but smoking just makes it worse in general I think.
I really suffer from depression. I know the root of the depression but its expensive to solve right now for me.
Got prescribed Lexa, I have it almost three years and scared to take it because of pssd.
Since then my life, carreer and health is not the best.
I barely go to the job, shower etc. My room look like a trashcan and I am very depressed that people are giving me weird looks.
Should I just risk it? This is not life, it is torture but can be possibly better or worse if I get pssd.
The thing is, I dont have energy I have really severe depression for past 7 years and Im 30 and depression waster my 20’s which make me more depressed.
Is it worth the risk? I think risk of getting pssd is like 15%
DO NOT DM ME I WILL INGORE YOU. I WILL ONLY LOOK AT COMMENTS
So I was the patient that did the "castration" trial. I would say suppression because it was temporary and the word castration scares people. I used Orgovyx and Leuprolide which are used to treat prostate cancer. The testosterone comes back folks!
TL;DR the trial wasn't that bad and now my testosterone is higher, I have stronger nocturnal erections and morning wood. I sleep much better. I still have blunted emotions/ anhedonia and sexual numbness.
We did this trial because I had an elevated 3adg/ 3a-Androstanediol Glucuronide reading on my blood test. It was over 5000, above the highest range. For those who don't know, Dr Powers gives you hcg to see how you respond. It didn't help me right away but that's when we noticed this reading.
I also had an array of androgen metabolism mutations in my genome including but definitely not limited to a UGT2B17 deletion which showed 0 testosterone in my DUTCH test which means I can't glucoronidate testosterone. I REPEAT, THIS ALONE DOES NOT MAKE YOU VULNERABLE TO PFS. I had many more mutations, like ABCC, some others which are listed in an old email from the doctor now that I can't find.
3adg is a proxy for intracellular androgen buildup caused by finasteride which is the cornerstone of Dr Powers Theory on how PFS happens. I'm not going to repeat it to you. You can look at his posts.
The idea was to get my 3adg down to 0 which would theoretically clear this intracellular buildup. The cleanest way to do this is to supress testosterone with Relugolix (brand name Orgovyx). To buy in the USA is very expensive, like almost $3000 dollars and insurance did not cover it for me ( Leuprolide is much cheaper and I ended up using that later). Relugolix brings you down quickly and washes out in a couple days.
We did weekly blood tests to measure my hormones, we started with a full panel. But went down to only testosterone and 3adg for cost reasons.
Testosterone dropped down to castrate levels (under 100) quickly but due to test result lag, we didn't know that 3adg had a floor of 300 until I was almost out of Orgovyx pills. So to bridge the gap we switched to Leuprolide, which was an 8 mg injection one time.
The 300 level of 3adg was because of my adrenal androgens, the testes had been totally suppressed. I had to start hydrocortisone to supress my adrenal production too. We were eventually able to get my 3adg to under 100! Hooray!
I tapered off the hydrocortisone and was on no additional drugs so I could let my body restart everything. No testosterone or hcg shots to kickstart me. And my testosterone seems to now be higher than before the trial! It's 730 and was like in the 500s before I did this trial. It wasn't this high since I got PFS in the first place. I don't know how this happened, it could possibly still be temporary.
As to how I felt during this, I felt pretty fine! I was able to carry on my life just as well pretty much. Starting Relugolix/ Orgovyx, I had huge fatigue, but only for the first couple days. I had a weird blank mind issue too, but we attributed it to me taking Calcium D Glucarate along Orgovyx, I stopped that and it was fine. Now with my testosterone at near 0 my genitals did contract, but after the trial they are back and probably a bit better than before. Same story with ED.
The hardest medication was hydrocortisone. It did worsen my depression/ cause depressive episodes and darkened my thoughts. But I knew it was from that drug I was taking for a short time.
At the bottom of my suppression, I was able to run a full marathon. I didn't lapse at work. During the trial I probably felt a little more apathetic and a little more tired. My sleep was probably a bit worse. But it was nothing like my experience in early PFS, right after my crash.
About my PFS symptoms, I consider myself to have average/ classic symptoms:
No libido, no erogenous sensation, anorgasmia, anhedonia, emotional flatness, substance blockage (can't feel the euphoria from alcohol/ weed), weaker erections (for me not total ED), lack of morning wood, less restful sleep, and more that I can't remember.
What this trial did that I've managed to notice so far:
My testosterone is higher.
I sleep more deeply (this may be from the hydrocortisone), I sleep longer, I can sleep in.
I notice morning wood and nocturnal erections more often now, most nights. They are stronger what I would be before doing this even when I took Cialis.
Stronger erections.
Better urinary function, eg: fewer pee stamps
Cold showers more more activating/ invigorating (can't say this for sure but feels like it).
What I am still dealing with, the symptoms like emotional flatness and libido like I mentioned before.
The Dr says that this fixed the androgenic signaling and the symptoms that overlap with PSSD (I don't have PSSD and never took antidepressants) is what is left to address. I tend to agree. It at least helped a lot.
Would I say it was worth it? Yes! It helped us learn about the condition and it helped me feel better. It wasn't that hard to do. The next people to do this can do so for less money and less time. The most expensive part of this is definitely the weekly blood tests! More than the medication for sure. I'm not sure how the insurance situation is looking for me and it's definitely adding up.
DO NOT DM ME I WILL IGNORE YOU
Edit: I'd like to say that Dr Powers has been an incredibly knowledgeable and attentive doctor. He has answered hundreds of questions from me as a patient and in general is a good guy. I would not have undertaken this potentially risky protocol if he had not earned my trust and confidence.
I am 25 and was on the lowest dose of sertraline from age 18-21. I never upped the dose because I was getting pretty bad brain zaps and insomnia. I am currently taking propranolol for anxiety.
Recently, my mood has been lower than ever before, and things are likely to get worse over the next 6 months (I lost my job and other personal circumstances). I am really struggling to cope.
I want to go back on SSRIs, but I am worried about PSSD. I have never had an orgasm which I blame on sertraline (but it could be caused by something else). The doctor says there is nothing physically wrong with me, but she also said I would be very, very unlucky to get PSSD, and my anorgasmia is probably caused by not being relaxed enough.
What do you think? Should I chance it and go back on SSRIs?
For some of us, I know our inner monolgue has changed. Maybe it is due to exhaustion, anxiety, depression, anphantasia, anhodenia, vitamin deficiency, adrenaline fatigue, psychosis, inflamation, gut inbalances, etc. These will all trigger their own issues with thinking, and a lot of them can overlap or play into each other.
But let's put all of that aside for one second.
I just want to know how thinking has changed for you?
I had brain fog on meds. But what this looked like was an extreme lack of focus, less emotion except for maybe shock (I mean it is hard to be in the moment when you're feeling off), a lack of internal monolgue, as in my inner voice felt weak, like it was quieter and couldn't hold a train of thought, and some thought disorder, like world salad, music playing nonstop, etc. Like my brain was just grasping to fill the void with something but didn't have the capacity to actually think.
Five years later, I am getting better. There aren't any thought disorders and I can enjoy a conversation again. But when I am stressed, which will come on seemingly at random, my thoughts will stutter. I am sure this is probably anxiety related.
But I still struggle with no longer having loud, cohesive, and controlled inner monolgue that I can run through scenarios and thoughts experiments with. As a result, I am a little aloof, less motivated, and less creative. Pushing myself can be incredibly exhausting. I think my thoughts are most "normal" when I first wake up for a few seconds and I am calm. It really seems like I can only think somewhat clearly when I am laying down. Probably nervous system related.
What is funny is I have always had ADHD. There is a possible simple answer that the meds not only made it worse while on them, but while off, they have thrown me into an ADHD burnout. It is why thinking the same thoughts, like planning my day, is now extremely exhausting, when before, it was my second nature.
I would love to hear how your thoughts have changed and what has helped you.
The silver lining, is I was always so hard on myself. That is what led me to medications. Now, I have immense love for who I was. I appreciate how creative and empathetic I was. My new challenge, is learning how to still love myself. Because while I may not be witty or the life of the party anymore, I am still her. I still have the same humor, the same trauma, the same morals. I am just clearly very tired and "woke" from what happened to me, and still learning to live in peace with it.
Hello! I really think these instructions can help all Dr. Powers patients here. https://www.reddit.com/r/DrWillPowers/s/7q3H6NVuBf
But they are not comprehensive. That is why I am asking the Dr. Will Powers community to help me improve this instruction set. If you see something that could be improved or that is missing please let me know! Also big Thank you to both Dr Powers Community members that helped confirm that UGT2B7 variant
What is your guys’s experience with talking to people after experiencing PSSD? I feel like since my imagination and mind is blank, I have trouble enjoying conversations and keeping them going. Also, contrary to how I was a few years ago, I am less talkative and more reserved, almost like my entire personality has changed completely. When I stop taking medicine, I find that I am able to enjoy things more, but I still don’t fully feel happy or get pleasure from doing certain things such as listening to music, hanging out with friends, etc. Unfortunately, the severity of my OCD makes it almost impossible to come off of medication completely. Last year, I came off of it for a few months and felt like I was losing it. I am unsure what to do at this point and just want to feel normal again.
I figured out how to run my VCF and TBI files through PharmaCAT, which took hours, but ended up giving me useful pharmacogenomic information that I was not able to pick up from my VCF and BAM alone.
The PharmaCAT output opens in any web browser. I also manually confirmed the genes marked with an asterisk against my BAM, so I’m comfortable treating those findings as reliable.
The biggest finding from my report is that I’m a CYP2C19 ultra-rapid metabolizer, while also being heterozygous for a CYP2D6 loss-of-function variant. I have not fully verified phase yet, but I strongly suspect that at least one of the other high-REVEL CYP2D6 variants I found may be on my remaining functional copy.
The reason I think this matters is because, in our group, we keep seeing CYP2D6 disruption show up again and again in PSSD genomes. Variants that either wipe out or significantly slow CYP2D6 seem way more common in the people we have looked at than I would have expected. Out of all the genes I’ve seen while helping people dig through their genomic data, CYP2D6 has been one of the loudest “something is going on here” signals.
I brought this up to Dr. Powers, and his response was:
“It just increases exposure to some SSRIs. Basically, 10mg can feel like 30 or 40 to these people.
Also it directly synths dopamine in the brain from tyrosine.
Aka, thank you, but I saw this awhile back. I am very aware of it.
It’s not ‘the answer’ but it’s a risk variable.”
That makes sense generally, but in my specific case, Zoloft is primarily metabolized through CYP2C19, and I am a CYP2C19 ultra-rapid metabolizer. So the simple “increased SSRI exposure” explanation does not seem like the cleanest fit for me personally.
What makes this more interesting is that CYP2D6 keeps showing up even in people whose original drug was not primarily metabolized by CYP2D6. That makes me wonder if its relevance is less about drug clearance alone and more about the second point Powers mentioned: CYP2D6’s role in dopamine/tyrosine-related brain chemistry, or possibly some other mechanism we have not explored yet.
Even more confusing, we are also starting to see CYP2D6-related findings in some PFS genomes, not just PSSD. I’m working on getting that data organized and posted separately.
I’m not saying CYP2D6 is “the answer,” but based on what we are seeing across multiple people, it is starting to look like a legitimate risk variable worth paying attention to.
I want to warn people about PSSD but at the same I don't want the posibility of preventing someone from taking antidepressants if they really need them. I have the worst OCD and I worry about the knock of effect my words have on people. I warned my art class of 37 people about PAWS and PSSD, about tapering safely and seeing a doctor because i dont want people to make the same mistake i did. I felt the need to tell as many people as possible out of pure love and to saves someone's life, but I didn't think it through. And I know it was a OCD compulsion to tell everyone, even tho i knew it was off topic. But now I am scared of the bad posibilities i think of in my mind will happen to someone. I really can't rest and relax. I can't stop worrying.
I try and reassure myself they will eventually find out about PSSD anyway, that its going to become more well known. And that my country is going to have the warning put on the label.
I really just don't want to cause someone to be scared. I don't want to prevent people from taking antidepressants or cause someone to come off if they really need them to function. But at the same time I want to prevent people from going through what we are going through because I don't wish this disorder on my worst enemy
I said straight after that antidepressants saved my life and helped me. And they help others so i wasnt protesting against it
I feel like such a bad person and I wish i never spoke up about it now, because I know what my mind is like. I know that I overthink and now this is going to cause me to spiral into overthinking. I'm doing it now.
Not only that but ive now alienated myself from my art class. They probably think I am mad. Some people think I am a bad person spreading fear and misinformation. I don't know if i want to switch uni's now and be closer to my family.
Im not even worrying that I have PSSD anymore I am just worrying about the ripple of effect my words might have on others like the butterfly effect if you've heard of that term. I am holding myself too much responsibility
There are people on social media with a high influence that spread the word about PSSD and many many people see it. But I would be so afraid of doing that myself because I don't want to scare the erong people or cause someone to come off if they need them to live.
I hate overthinking so much and sometimes I wish life wasn't so complicated and complex sometimes because it wrecks with my head so much...
The thing that started this trigger was that my friend messaged me that he'd be dead withobut his medication, that he'd hate for one of his friend to be scared and come off them and be put in danger. This message has caused me to spiral because i didnt think of this posibility at the time. Now I am scared of having responsibility for someone's death. That's what worries me the most
What if something bad happens to one of the people in my class in the future and it will be my fault? And people in my class will put the blame on me?
I didnt try to spread any fear. I said that people can recover from this disorder too. I just wanted to make people aware and not make the same mistake i did of tapering too fast.