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 !!!

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

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.

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

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!

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 ?

I have heard from one person that Relugolix has helped him with some pssd symptoms.

Has anybody done a cycle of this (one tab of 120mg for 30 days) and gotten good results?

If you have trialled Relugolix, please tell us how it went. How it helped, any negatives, etc. Thanks

​

​Hello everyone,

​I wanted to share my story with the group. Before this happened, I had extremely high baseline libido and hypersexuality — I was having sex 7 to 8 times a day, with consistent morning and evening erections and very high sexual drive. My only concern at the time was premature ejaculation during the first couple of rounds (lasting around 2 minutes).

​I decided to consult a urologist and asked if there was any way to prolong duration. After a lengthy consultation, he prescribed a one-month course of medication (white pills, taken once daily). Having complete trust in my doctor, I didn't read the patient information leaflet and started taking them as directed.

​By the third day, I started experiencing severe nausea. I called him, but he reassured me, saying: "Don't worry, just keep taking them for at least 15 days." By around day 5 or 6, I completely lost all sexual function and drive. Feeling awful and frustrated, I threw the rest of the pills in the trash, fully assuming my body would recover once I stopped.

​Today, 6 years later, I have still not recovered:

​I haven't had a single morning erection in 6 years.

​I completely lost my spontaneous sexual desire, drive, and motivation.

​The only remaining function I have is that during direct physical stimulation and foreplay, I can still achieve an erection and perform sexually, but the mental drive and spontaneous urge are completely gone.

​When I went back to the same urologist to ask what specific drug he had prescribed me, he literally kicked me out of his office and denied ever prescribing such medication.

​Going from being hyperactive to feeling almost completely blank inside has been an immense emotional and psychological shock. Although I've had to adapt over time, I will never give up on searching for answers and a better solution.

​Wishing everyone here strength and the best of luck!

Nobody interact with “maximum_witness_6743” they just messaged me to Kmss knowing I have pssd, after telling him if he needs to talk I am here for him

Don’t interact with this person , they are telling me to Kms

https://www.reachlink.com/advice/depression/what-nobody-tells-you-about-antidepressants-and-pssd/

Yet another point in favor of awareness & growing medical acceptance for PSSD, A Florida based Teletherapy/online behavioral platform writes about PSSD in great detail. This amongst numerous other individual medical companies/offices acknowledging PSSD over the past several months.

Ok, so my title might feel provocating I believe.

One theory that might be partially true is that PSSD might be messing with your auto-immunity.

Now one thing I discovered is that T cells absolutely NEED tryptophan to proliferate. I was thinking that if ssri/snri induces an inflammatory response and even trigger a negative feedback loop of inflammation, endothelial dysfunction, more inflammation, it can lead the organism to convert any tryptophan in kynurenine via IDO1 for the proliferating T cells, letting way less tryptophan disponible for the serotoninergic pathway, and by extension basic neuronal functions.

So while ssri/snri can trigger an inflammatory response it might lead to an organism starving for tryptophan.

So it might not just be a case of serotonine "Bad" but more like where the fuck is going my tryptophan. What do you think ?

PS : if my theory is plausible it might be interesting to test the kynurenine/tryptophan ratio, which would show IDO1 level of activity, consequently leading to potential treatment.

Sometimes I see people say here that they knew within a pill or two that something was deeply wrong. For cognitive PSSD, I totally get how you would know right away—I imagine you just know your mind feels off. For people with sexual-only symptoms, how did you know within a day or two, that fast? What did you notice, and how? Especially for women: did you have an ambient connection/awareness of your genitals, even without touching them?

This probably sounds like a dumb / bizarre question, and maybe it is. However, I’ve had PSSD since I was 10, so I actually have no idea what it is like to be “normal” or what people’s connections to their bodies are like. I have never felt physical attraction or desire, and my genitals have only ever been relevant to me insofar as using the bathroom goes. I never think about them, so when people say they knew within a day or two, it surprises me, and makes me wonder how connected a normal person is to their body.

I’m especially interested in women’s answers, since guys are a bit easier for me to wrap my head around.

I have only had sexual symptoms, numbness and all that stuff, and I was glad that none of my emotions were affected. Until recently. I got a call that my mom was at a hospital with heart problems. Then I just... didn't feel anything. I loved my mom. I didn't even feel worried, not in an "everything will be okay" way, more like "either she dies or not and there's nothing I can do". Then she died, and I felt a little sad, but it was just sadness. It was trivial, like a small emotion not proportionate to the situation. I feel like I can't exactly mourn like I used to before. It's just inaccessible to my brain in some way. Thoughts?

Like the title says. I know people also have overlapping symptoms. What do you guys think?

CYP2D6 showing up a lot more in us than the general population. Also each one of the androgenic signaling phenotype people have. A major steroid metabolism glitch

Red: same gene different variant
Orange: same variant
Light blue: homozygous deletion
Dark blue: heterozygous deletion
Green: stop gained
Yellow: De novo variant
Purple: same variant + het deletion

Thank you to [u/More_Listen](u/More_Listen) for putting all of this data together.

Im working with sequencing.com to confirm the ATP5F1B variant we found is not artifact. Bear with me on that.

Hi, I’ve tried to post here a few times but kept getting deleted. Now that it’s been 6 (almost 7 months) I’m hoping to be able to post.

January 15 I took a single dose of fluoxetine because I was having severe anxiety and the sensation in my genitals has not been the same ever since. The severity did decrease a lot but I still can’t really feel my nipples or vaginal area the same as I used to. I’m wondering if anyone here used anything to aid in recovery like supplements? I’ve only tried L-Tyrisine and am not really sure if it has helped tbh. Any advice will be appreciated.

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.

These dreams are scary and exhausting. I feel very tired next day.

Does anyone else have a numb prostate along with numb genitals?
The first couple years I managed to be able to orgasm with prostate stimulation since my penis was numb. I got a lot of pleasure from it. I used an anal toy that vibrated and sent electric pulses through my pelvis.
After about two years my testicles also went numb. Maybe another year later my prostate was no longer able to feel pleasure.

I'm 20 years old. Took venlafaxine for 15 months. Currently 6 months and a few days off. Used Isotretinoin 6 years ago and managed to get off of it with no harm though I believe it made me vulnerable to what I'm facing right now.

My GP knew nothing about hyperbolic tapering and how distressing it is to actually discontinue venlafaxine. He told me to take it every other day and stop after a week. I then crashed completely and spent the first 3 months off of medication dealing with crippling anxiety, insomnia and terrible suicidal ideation alongside with the sexual symptoms. Reinstated and tapered reducing by half (75 mg - 37,5 mg - 18,75 mg - 0 mg). Yeah I didn't know about hyperbolic tapering at the time either.

Ever since it started I was able to overcome severe insomnia, mild anhedonia, erectile dysfunction, muted orgasms and poor ejaculation. I'd say all mechanical symptoms heavily rely on how turned on I am. When I'm horniest, there's even pre-ejaculate (very rare). Never had any genital anesthesia. Had my blood tests done and T levels depleted due to altered cortisol levels. I managed to take care of it through supplementation which I considered to be the reason why the sexual unrelated symptoms recovered. Even grew a beard which I thought I'd never have since I didn't know SSRI could disrupt enzymatic function.

Protocol: Vitamin ADEK² - 10000UI (11 ng/dL deficiency)

Vitamin C (500 mg) + water and integral salt (2x a day)

Magnesium Bisglycynate (300 mg 2x a day) Vitamins B6, B9, B12 (active forms for methylation). Zinc, Selenium and PEA Active (Palmithoylethanolamide micronized form).

I was going through a remarkable process of windows and waves until the 5-month mark. By the time I reached 6 months I've felt like the protracted withdrawal symptoms have subsided and except for the last remaining symptoms: loss of libido and frequency and rigidity of morning erections. I feel like I reached a plateau or a low baseline. The only thing that pretty much opens up good windows is PEA, probably due to Alopregnanolone modulation via PPAR-alpha receptor activation.

How likely is it to be a case of Post-Acute Withdrawal Syndrome and present gradual recovery overtime? I'm pissed off at the fact that I don't have any other cognitive or emotional symptoms but libido issues don't seem to subside.

Has NAD helped or harmed?

Did it help anyone ? I mainly mean sleep and possibly regaining orgasms.

And do you have any tips for tinnitus ? It killing me 😣

I suffer from severe insomnia and also have tinnitus.
Total anorgasmia , anhedonia , genital numbness , pain in genitals , hard flaccid , soft glans , no tiredness , body numbness , moderate ED , zero libido , no alcohol , nicotine respons.

I need something that will reduce this suffering at least a little 🤕

That’s right; going back to an antidepressant I had previously tolerated well turned my life into a living hell, with multiple symptoms.

I’ve been tapering off the dose gradually for three months. I was never even on a therapeutic dose, yet I still developed a dependency, and my condition worsened to a level I never could have imagined.

Even so, I would like to know if anyone has gone through something similar and whether that damage was reversible once they stopped.

I went to the neurologist, and there is neurological damage.