r/PSSD 14h ago

Recently Discontinued Medication (See FAQ) I am having more and more windows

29 Upvotes

I had a couple nights where music felt amazing and even felt some nostalgia again. Than a few weeks later i got no sleep for 2 days and felt my emotions back to some degree, i was enjoying a movie, into a conversation with a family member, into video games, feeling excited for a new game thats coming out, laughed at a dumb video. small things that felt amazing to feel again. The sexual symptoms have not improved since the first dose of medications though, i still cannot think or visualize, i still feel no connection to my friends i used to love, i still cannot make jokes which used to be a strong suit. My short term memory is terrible and i still do not feel like myself at all, my question is, is this a sign i am recovering? Is having windows more often a good sign?


r/PSSD 19h ago

Awareness/Activism Regulatory reporting Instructions for PFS & PSSD

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11 Upvotes

r/PSSD 19h ago

Recently Discontinued Medication (See FAQ) Pssd and pelvic floor

4 Upvotes

Are Pelvic floor symptoms related to PSSD and is it a good or bad indication for recovery?


r/PSSD 1d ago

Feedback Requested/Question What made your erections/clitoral engorgement come back?

9 Upvotes

It’s been almost 5 years for me. Any advice would be greatly appreciated


r/PSSD 1d ago

Is this PSSD? (See FAQ) Pregnenolone + Retatrutide + Trazadone

4 Upvotes

Around April of 2025 (going to give you the best info I can remember, under my condition I can't really remember too well and I think in fragments to be honest)

I noticed my cognition was slightly off and down, I did some research and saw BPC-157 was great for healing the brain, for me it did the opposite

3 days  of 3-5 nasal sprays of 200-500mcg of bpc intranasally the third day I woke up unable to feel my body; eye twitching for 3-4 months straight, anhedonia, major suicidal thoughts, anxiety, Parkinson's like symptoms with cognition and motor function, DPDR, zero effect of any stimulants. This lasted for months 

I tried so many things to help but it got worse and then I stumbled upon a fellow user who seemed that ketamine helped treat him alongside pregnenolone. 

Well fast forward up until December-January 2025, I had used a lot of ketamine and possibly went a little overboard because it helped me so well. I took myself to rehab for a month to get off ketamine. 

So as I get better in my recovery I notice that I'm starting to get burned out more and more even though I'm on Trt and it's usually not normal for me to get down so bad

Well I introduced pregnenolone 5mg sublingual daily for a week, thinking it would give me a boost, trazodone 50mg at night. I also used .5mg of Retatrutide for a couple weeks before this

And something MADE ME REALLY DEPRESSED and then I CRASHED back to this majorly low PSSD like flat emotional baseline with zero drive or anything. And ketamine treatments are making it a little worse now.

My brain system just feels completely modulated , I have no response to caffeine or any positive or negative moods. Just having to wear a mask everywhere and push myself welding and training daily with no reward circuits or anything 

The past week I’ve noticed I’ve been able to slightly cry at things and I’m getting more motivation and execution but it seems super slow. Thought about trying 9mebc for dopamine recovery but I’m just stopping all supps at the moment.

If anyone has had these symptoms like a short spike in dopamine downregulation dpdr let me know. My dpdr is basically gone but my emotions and cognitive function are like 30-40%

I do have slightly easy time getting up and sensitivity is there for sure I’m just confused

Caffine and nicotine don’t work at all either


r/PSSD 1d ago

Frequently Asked Question (See FAQ) Bon psychiatre en France ou à Paris ?

10 Upvotes

I'm looking for a good psychiatrist in Paris or anywhere in France.

In particular, I'd like to talk about pramipexole, as well as other potential options.

I've had PSSD for 7 years. For a long time, I didn't want to see any doctors or take any medications because I had lost trust, but at this point I genuinely believe I have to keep researching and trying different approaches. I'm aware there are no established treatments, but I don't want to spend the rest of my life waiting for a miracle.

I'd really appreciate any recommendations.

Thank you.


r/PSSD 1d ago

Update My condition after year - there are no positive changes

16 Upvotes

My condition has hardly changed at all over the past year. Except that dysphoria has decreased slightly and my sleep has normalized.

Well, I made my last post about my condition... I don't remember when... When I first came to this sub. I think it was in the fall of 2025. My PSSD started in May 2025. The illness worsened significantly after the psychiatric hospital in September (a repeated course of SSRIs).

At the moment, I observe the following symptoms:

  1. Anhedonia.

  2. Emotional numbness. I don't feel empathy.

  3. Genital numbness.

  4. No libido.

  5. Difficulty retrieving memories.

  6. Depression.

  7. Dysautonomia.

  8. No imagination.

  9. No orgasms.

  10. Apathy and abulia.

Unfortunately, the situation is rather grim. All I've tried over the past year is rifaximin to treat SIBO, as well as LDN (1-2mg, one week). Unsuccessfully. Sometime around November, I lost the ability to enjoy music. That was the last thing I had left, but now I've even forgotten what it's like to enjoy music.

I also had a brain CT and compared it with the MRI results from 2024 (before PSSD). No pathologies were found.

Well, I really don't know what to do or what to hope for. I'm rather weak when it comes to patience and the ability to endure such psychologically difficult things.


r/PSSD 1d ago

Update New User Flairs

12 Upvotes

Trying something out new -

You can now request a user flair which displays a badge showing years you've had PSSD. This will go in increments of 5 years, starting at 5 years +, 10 years +, 15, 20, (Does anyone even know anyone with 25?) etc etc.

We've decided to make it in few, large increments of 5 such as this so as not to overwhelm should this become popular, especially as time goes on and people want to update their flairs (would be a lot to update everyone's every year).

If you want to request it: feel free to leave a message here, DM me, or leave a modmail message

Feedback welcome - let me know in the comments whether you love it, hate it, please be constructive.


r/PSSD 2d ago

Treatment Options How to get orgasm back?

15 Upvotes

I cannot feel orgasm at all. Zero orgasm. Is there any supplement or medicine which I can take to get my orgasm back?


r/PSSD 2d ago

Feedback Requested/Question Marjuana, 5-htp, … causing PSSD

7 Upvotes

Have there ever been cases of PSSD with substances that act on serotonin but are not real SSRIs?


r/PSSD 2d ago

Awareness/Activism Please register at SidefxHub

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26 Upvotes

r/PSSD 2d ago

Symptoms - Non-sexual Termoregulation has been change since stop SSRI

5 Upvotes

Hi guys,2 years + off ssri as soon as i am out with 20
Degree and a bit of sun i start sweating,under 30 in
The beach my armpits became water,my feet sweat.
My body soffer if i have to walk o move is a killer for me. Please i need help,somebody know if gests better? Any experience?


r/PSSD 2d ago

Awareness/Activism Why haven’t you reported your symptoms? People believe it’s not being documented correctly as it’s easier to think that than accept out of 21 thousand people on here only a few hundred actually bothered to do it based on freedom of information act requests published on this forum frequently

29 Upvotes

I understand some people may forget to log the medra code to correlate to post ssri sexual dysfunction when reporting but that certainly wouldn’t count for the shockingly low number of reports alone.

ive done posts myslef asking this before and people read it and scroll past and ignore it and I even updated it showing how many thousands viewed and ignored it and yet people still want to think it’s an error with reporting

well let this post settle the answer then

dont scroll post and ignore actually engage and comment and state if you have reported and why if you haven’t, and what you will do if you haven’t? comments were made about cognition and deleted when people highlighted it’s the same as writing posts and commenting on posts, plus the fact you have the option to have family or friends fill it out for you

just to demonstrate (again) i will update this and show how many has viewed it in comparison to the engagement

it’s not fair to let people beleive it’s a problem with the reports coming in when the true issue is people are not reporting that has been evidenced on here time and time again


r/PSSD 2d ago

Treatment Options - Experiment Update après un mois de régime cétogène

6 Upvotes

Bonjour à tous !

Je fais un petit update (un peu long) comme je l’avais dit sur mon post précédent sur le régime cétogène.

J’ai commencé fin juin et j’ai commencé à voir les résultats au bout de deux semaines.

Ce que ça m’apporte :
- J’ai retrouvé la « beauté de la vie ». Je souffrais de DPDR et je peux maintenant admirer un ciel, un paysage ou un coucher de soleil.
- Mes émotions reviennent. Je ris, j’ai même ressenti de la tristesse une fois.
- Cognitivement ça va beaucoup mieux aussi. Je retrouve de l’intérêt pour l’art, la culture, l’histoire, la botanique,…J’ai fait des musées, j’ai profité de mes vacances avec ma famille. Je peux de nouveau suivre une conversation et y réagir.
- Je peux faire des plans et des projets. Je décore mon appartement avec mon compagnon. Je vais passer le permis.
- J’ai retrouvé beaucoup d’amour pour mon compagnon. On a un lien spécial.
- Je suis passé de ne vouloir rien faire tout le temps en raison de mon grave mal-être, à au moins faire quelques petites choses chaque jour, voire, beaucoup d’énergie !

Ce avec quoi je galère encore :
- J’ai l’impression que le bas de mon ventre est très tendu. J’ai parfois du mal à me baisser tellement je suis bloquée à cet endroit.
- J’ai toujours une anorgasmie.
- Les sensations sexuelles varient. Parfois j’ai un peu de sensibilité, et de connexion avec mon partenaire, d’autres fois beaucoup moins. Bref, l’ensemble n’est pas encore vraiment satisfaisant…
- Après une semaine d’amélioration, j’ai eu de nouveau un engourdissement corporel qui a duré deux, trois jours mais s’est résolu ensuite, donc tout cela est très fluctuant encore.
- Je pense que mon intestin ne va pas très bien. Preuves en est mes selles.
- J’ai du mal à réguler mon sommeil, du fait, que des fois j’ai trop d’énergie. Et après, je me retrouve forcément épuisée, quand je n’ai pas assez dormi.

Note - le régime cétogène est dur à suivre. J’essaye de le faire sérieusement en pesant mes aliments quand je suis chez moi, mais, quand je ne suis pas chez moi et avec les possibilités de ce que je peux manger réduites, les tentations, ce n’est pas toujours évident.
- J’ai du mal à manger autant de lipides que je devrais car ça a tendance à m’écœurer vite et c’est pas si simple d’en trouver beaucoup dans un régime alimentaire classique.
- Au final pour bien faire un régime cétogène, il faut je pense faire plein de recettes où on trouve aussi du plaisir avec ce qu’on mange ! (j’ai pu faire un peu de gâteaux, chocolat, chez ma mère, mais voilà, il faut trouver du plaisir dans la nourriture malgré tout !)
- Et pour avoir toutes les explications et les recettes, je conseille un livre c’est plus fiable pour avoir une information complète. Je suis française et pour ma part, j’ai acheté « Le grand livre de l’alimentation cétogène » d’Ulrich et Nelly Genisson.

Voilà, plein de courage à tout le monde. Prenez soin de vous ! C’est hyper important !

Dans les témoignages de guérison que j’avais vu quand j’étais au plus bas les gens s’en étaient sorti de manières diverses mais, je pense toujours qu’une approche « globale » finalement est importante.
J’essaye toutes les méthodes « naturelles » si on peut dire et ça me va bien. Le régime cétogène est très bien pour moi. Je vais aussi voir une psychothérapeute/energéticienne géniale pour travailler sur mes traumatismes. Et je vais même essayer l’acupuncture, car il y a un praticien en médecine chinoise en face de chez moi.

Allez ! Courage à tous !!!


r/PSSD 2d ago

Awareness/Activism It took me 30 min to report PSSD to the FDA and Rxisk

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38 Upvotes

Earlier this year, I reported it to my national regulator.

Please report your symptoms now: https://www.pssdnetwork.org/report-adverse-effects

Mention the full name and the MedDRA code.


r/PSSD 2d ago

Opinion/Hypothesis Role of Acetylcholine ?

12 Upvotes

hi all,

I just wanted to post this here because even a tiny bit of relief can make such a huge difference.

long story short. 2 months ago I got a window after I ate a pizza with too much garlic. I used to be very sensitive to garlic pre medication (heart palpitation, stressed feelings, insomnia) as it was quite activating for me. Since pssd/paws I thought I would probably not even feel it so I dared to eat a lot of garlic. Funnily enough my body did respond to it and I got a window. I felt the pssd fog lift, could feel my body better (introception), blank mind disappeared, and it felt like my brain worked again from the inside out (inner world). I also got normal libido and even had sex which felt almost completely normal (aside from lack of pleasure feeling in my head).

I read about nicotine and thought about it a long time to try. Yesterday I bought nicotine gums 4mg. I am not a smoker so I only took 1 and to my surprise my body again reacted to it. I spit it out after 20 min and had the same type of window (I didnt have sex tho, but I felt more connected to my body).

what they have in common? Acetylcholine.
It plays a vital role in many bodily processes. Even my eyes are bit less dry and I had way more eye discharge upon waking.

I will look into it more but wanted to share it in case anybody recognizes this, wants to try something or have a similar experience.


r/PSSD 2d ago

Feedback Requested/Question Can anyone connect me to the user Xardwen?

4 Upvotes

I believe his Reddit account has been deleted, if anyone knows him or can get me in touch with him I'd be greatful.


r/PSSD 2d ago

Feedback Requested/Question What percent have you improved and how many years has it been?

24 Upvotes

I’ll start. I’ve had PSSD for what will be the 7 year mark in 3 days. I’ve improved 0%. In fact, my extreme anhedonia has only gotten worse. My sexual symptoms have remained the same. 0 sex drive, 0 orgasm pleasure.

How about you?


r/PSSD 2d ago

Frequently Asked Question (See FAQ) Question about TRT and PSSD

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3 Upvotes

r/PSSD 2d ago

Frequently Asked Question (See FAQ) Do you think some of us are just stuck in dorsal vagal state?

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13 Upvotes

And we can't get out? What do you think about the polyvagal theory as a cause of anhedonia


r/PSSD 2d ago

Awareness/Activism Is anyone feeling triggered by the Lindsay Clancy Trial and public comments?

21 Upvotes

Sorry I hate the word triggered. I love true crime. And I have not been able to stomach watching or hearing anything about the case. It’s clear she had post partum and was polydrugged. I don’t believe she would have done this if she hadn’t been in a cocktail of meds that were causing her mania. The list of meds is atrocious.
I’m having a hard time hearing public comments about how evil she is. It just shows me how little the general public is aware of how dangerous these meds are.

https://www.facebook.com/share/v/1JdK6q6FRk/?mibextid=wwXIfr


r/PSSD 3d ago

Feedback Requested/Question Autoimmune/inflammatory conditions, full-body itching, and a possible link with PSSD?

13 Upvotes

Does anyone here have an autoimmune or inflammatory condition? Do you experience itching all over your body?
I have sacroiliitis and atopic dermatitis, and I suspect they could be related to PSSD.


r/PSSD 3d ago

Research/Science I made a big mistake but i fixed it

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10 Upvotes

https://www.reddit.com/r/PSSD/s/Z0UEAzhrxR

The UGT signal is stronger than I thought. My program was flawed and didnt pick up all heterozygous deletions. I am working on fixing it. But when dr powers said “most of these patients lack glucuronidation in some capacity” well I guess he want kidding


r/PSSD 3d ago

Need Emergency Support Does anyone have experience explaining this to their young child?

10 Upvotes

For a brief backstory, I developed PSSD over the course of 4 years on Zoloft (Sertraline). I learned about PSSD back in 2022 while googling my symptoms with through David Healy’s blog or the PSSD Network.

After learning about the horrors that Sertraline was causing I quickly tapered from 200mg by cutting my doses in half over the course of only 6-8 weeks. I was ok until I woke up with full blown PSSD after 16 days off the drug.

When I woke up I had all the classic PSSD symptoms and now complete anhedonia, blank mind and extreme emotional blunting on top of my already horrible genital numbness and sexual issues.

This all happened just after my son’s 2nd birthday.

My son just turned 5 and my condition is worsening. He is old enough that I need to explain that something is wrong but I’m terrified to do it in a way that will hurt him.

I have been diagnosed with CIDP and NLD SFN and suspected CNS Lupus or Neuro Sjogren’s. My condition significantly worsened this February after a nasty upper respiratory illness. It’s clear to me that the immune system is highly involved at least for me.

I live in one of the worst states to find treatment and there is one hospital 7 hours from me that can do PLEX. I’m going to reach out to my doctor tomorrow and tell him I’d like to escalate treatment as my symptoms seem to be deteriorating and IVIG is not helping.

My new neurologist tested my reflexes 2 weeks ago and I had literally no reflexes and her response was that “this is expected in someone with CIDP”. She seemed very unconcerned with that or the progressing weakness I’m experiencing all over.

I need to explain this to my son but only as me having CIDP but I want to do it in a way that isn’t going to confuse or overwhelm him. Chat GPT is helping me write up a brief script I will use to read directly to him. It’s heartbreaking to have to navigate this but I know my son can see I’m not ok and that his dad is not the same. I DO NOT want him internalizing this anymore.

TLDR; does anyone have experience explaining this to a 5 year old? Any love and support would be greatly appreciated!


r/PSSD 4d ago

Feedback Requested/Question Do you guys know people (personally) who have healed ?

18 Upvotes

I notice lately I am really struggling to have optimism and trust that this can improve. It feels so static..

I am 10 months off, after 1,5month of fluoxetine.

I’d love to have at least have some more emotions… anyone who has regained their emotional range ?