I recovered 80% from PSSD and was happy, then took meds again

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justprocess1
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I recovered 80% from PSSD and was happy, then took meds again

Unread post by justprocess1 »

Please forgive me as I am posting a slightly edited version of what I posted on Reddit. For the record my story of recovery is on this forum and has been referenced from survivingantidepressants. But I do not want to dox myself.

I got PSSD back in 2010 after 6 years of Lexapro. Within a span of A few weeks my genitals became numb. My ejaculate became lower and then over the period of 8 months I lost total connection from my genitals, had very low ejaculate, severe genital anesthesia and no libido. I was totally impotent

I was devastated but I took stock and solace in a website called paxil progress which has since been shut down. There were plenty of cases of PSSD there and people recovered. I then moved on to surviving antidepressants where I am a more known case of PSSD recovery. I would post my screen name over there for verification but I'm worried about my identity and compromising that. Suffice it to say someone did post a link to my recovery here on this forum. I got curious today and searched my screen name.

I never recovered fully But trust me, when I say I didn't care about that. I recovered to the point where I was so happy with my sex life. It wasn't something I thought about anymore. A lot of my recovery was what I like to call, persistent recovery or persistent dysfunction. Meaning when I was in a relationship sometimes things would feel almost 100% better. My orgasms were extremely intense. Sensitivity would come back. And sometimes after sex for the period of 6 or 7 days I would feel connected to my genitals again. Morning erections came back. I had a voracious libido. When I would be single I would become asexual again. However, I would still have decent orgasms and decent erections. I think a physical recovery happened over the period of one and a half to two years. This happened from age 23 to 26 or so. I'm now 35.

This last year my mother was diagnosed with ALS, I was under the care of a doctor that had me convinced I have narcolepsy despite the fact that I don't and I'm doing much better now. And I also got intrusive tinnitus which i have now habituated from. From. Because of all of these I was suicidal and had to go back on medication. Zyprexa. And a few other ones. But the one I think that has made this most recent PSSD worst was I took a vibbyrd for 7 days. I feel so stupid. I should not have taken those pills. Especially the vibbyrd. I knew better but I was in a mental hospital and a doctor convinced me because I was so vulnerable. I should have taken the Zyprexa and refused the other stuff. At least I knew what Zyprexa and remeron would do to my body. The vibrid was a complete question mark, And an SSRI.

Currently it's much harder to reach climax again. Sometimes I have decent orgasms. Sometimes I have a little more sensitivity. Sometimes I feel very horny. But overall I feel much more disconnected and sexual stuff is more of a chore. I still feel very mentally horny and attracted. It's just my body can't respond currently like it did after I had mostly healed from PSSD. The numbness is significantly worse again and the orgasm quality is down and ejaculate quality. And while that sucks. It also gives me hope. Considering my first recovery I felt these things as well and slowly over 8 or 9 months. I started seeing signs of life. By a year and a half. I started seeing significant recovery. After 2 years a lot. And after 4 years I was satisfied with my new normal. More than satisfied. I had rock star sex. I also have to consider that over the last year and a half I've been through incredible trauma that resulted in me being hospitalized and was severely depressed to the point of suicidality. Also, my mother is dying in front of my eyes. So there can absolutely be some mental component at play as well.

Let me explain though. I got to a point where I didn't think about PSSD for 5 years. I didn't think about myself as having a sexual problem. If I had been born that way i would have never thought of it as a problem. That's how satisfied I was with my life. I would be able to get spontaneous erections during sex and have what I called Rockstar sex. Then I would go through periods where the PSSD would come back. This was like this for 10 years. But I always knew it would come back and so it became my new normal and I was very satisfied with it.

When I first got it, of course I was devastated in suicidal. I checked myself into a hospital. When I got out. I purposely dove back into life despite feeling the anhedonia and complete disconnection from my genitals. I decided I would still try to sleep with girls even if I couldn't get it up or really feel much. I still wanted to be with women and over a few months I would start to feel my dick move when kissing. Barely. Not an erection but it would move. And I would be able to get off with them through manual stimulation. It would feel okay. Then one night a few months later I somehow had sex while drunk and the orgasm felt pretty good. Then in the next relationship I noticed that after 2 months me and my girlfriend could have sex and that the orgasm felt really good and that after the orgasm my genital anesthesia went down 90% for a couple weeks. My ejaculate got much more and much thicker. Then over the course of another year or two it just got better and better and better. I was having sex up to 15 times a week sometimes.

There was some sort of physical recovery. I don't know how or why that happened. I was determined to not let PSSD ruin my life. I was determined to be vulnerable with women and I was determined that eventually things would work. There was something about the connection with women instead of being alone. That really sped up the recovery. From my cursory googling around different websites. It seems like oxytocin is probably the chemical at play in that. It literally was the difference between having PSSD and not when I could get emotionally connected with the right woman. Again. I am still married and my wife is very supportive. But I am absolutely upset right now. I don't know whether or not I can recover but I'm not going to give up. Just like I didn't give up 10 years ago.

I would say originally it took me four years to get to the point where I was happy with things again. Again, I would always get a lot of questions about. Did it recover 100%. And I want you to know that when you recover, when it's not 100%, you don't care about 100%. You're just happy to have your life back. So hold on to any improvement. And if it goes away. Remember windows and waves. It always comes back. I would also recommend that you be vulnerable and open to new experiences. Don't let the idea of 100% recovery be your obsession in life. Find any little pleasure that you can. I know that can be really hard when you feel disconnected from your genitals or your orgasms are muted or even mostly pleasureless. I know it can feel embarrassing and shameful. But I do feel that if you dive back into your life and reclaim your body and reclaim your own identity about your body, at the very least, you can still enjoy what you do have. This may not be true for everyone. And even perhaps in my significant current PSSD I still have it better than others. I don't have emotional blunting. I do feel very alive and good. But this PSSD thing does suck.

I do not know if I will be able to heal again. I do not know if given a year or two, like before, if my body will be able to repair again. I suspect it will and I know now that I will never take any psychiatric medications ever again. I was off them for about 12 years. I was on remeron for one year and didn't have any PSSD issues so I got bold and I paid for it other experimentations. I am having some days where I am very horny, I am having sometimes wear my ejaculate is better and I am shooting further. It does seem to be getting better in the ejaculate category. I do have some days where I'm very horny. I am waking up with morning erections again. And every now and again when my kiss my wife my dick responds and I feel horny. So there are little signs of life in there. And I'm trying to hold on to those as I did 12 years ago.

If nothing else, I want people to know that I absolutely recovered from PSSD to my satisfaction. Maybe not 100% like the way they work before medication, but I didn't care about that. I was happy and living a great life. I'm not suicidal. I still have some function and I'm off medication and can now let my body heal. I will report back if there are improvements. Love to you all.

Oh and one other thing, my recovery was simply based on time and exercise. There was no supplements. No medication. Nothing. It was just a natural recovery overtime. I did take lots of supplements like yohimbine. I took lots of fish oil. Vitamin D. A lot of Chinese herbs. But I think that was all buying time while things got naturally better.

One last thing. I've seen some things on this forum that inferred that most people that get PSSD don't recover. First of all, I consider a recovery. Anything that gets you back is satisfying sex life. I don't think 100% recovery should be the only thing that's considered recovery. I don't think it's the right language to use. Another thing. People that recover don't come back and post here on this forum. And another thing, many people probably don't come to forums like this in the first place so would never report it, or report it getting better
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Ghost
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by Ghost »

Not totally sure if we crossed paths years ago but sorry to hear you're back in a tough place. I have a strong hunch that I remember your particular story but will allow you to exist in anomynity as you like.

I second so much about what you say about reaching a point where you are satisified and happy with things and letting time pass. Life and the human body are weird fickle little things. There are ups and downs, some things get better, others get worse, and we all slowly march towards decay.

Give yourself some time, forgiveness, and a healthy environment to hopefully heal some of your function back. Hoping this isn't the end of your story and that better days come again.

G
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
Missano20
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by Missano20 »

Hey there, I’m pretty sure we have spoken in the past years and years ago. I remember your story. I’ve had this for ten years now and also considered myself a recovery story at one point… I got to a point where I was at least sexually very satisfied and had a raging libido. Like you, I went back to drugs (ambien for sleep) and crashed severely. I never recovered from it. Other things have crashed me but not like that did. Then turned to alcohol to cope with it all when nothing was getting better- just completely suicidal at that point. I’m angry at myself for ruining all progress I had. I could have easily moved on and never thought about pssd again. I hope you get to a place where you’ve moved on again. I know how devastating it is to get better only to get worse again.
justprocess1
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by justprocess1 »

Hey Gentlemen!

I think I remember you both. I am sorry to hear about both of your struggles and I of course deeply understand the pain.

Fortunately, I have had a big window over the last two days. Libido, orgasm quality, and erection strength are back for now. The genital numbness is still there. But it was over the years anyway and would wax and wane. Its the libido, orgasm quality and erection strength that mostly matter to me. The sensitivity can come and go. I also denote a difference between the deep sensitivity (almost like in the muscles them selves) and the tactile skin sensitivity (on the surface). It's the latter that was always an issue for me.

For the record over the last year, I have taken:

1. Ambien
2. Trazodone
3. Lithium
4. Wellbutrin
5. Viibryd (only for 7 days and I think that is what caused the setback)
6. Zyprexa
7. Oxcarbazipine
8. Remeron

I am off ALL meds now.

This windows and waves business is how it went the first time, and it seems like this is how it will go the second time.

To all hear I would never give up. People have had new recoveries at 1, 3, 5, 7 + years out. The brain is remarkable at healing.

I also (and my posts have always said this) strongly believe in the emotional connection in helping to "rewire" the brain. Of course, I have no evidence of this other than my own anecdotal case. But alone I always had difficulty and PSSD. Being alone vs with someone I loved was the difference between Major PSSD and mild to no PSSD.

Anyway. This window will end and I will go back to PSSD, but then the good function will come back, and be more robust, and so on. This has how its been for the last 12 years, its just this time with the Viibyrd I knocked myself back into a month-long wave where PSSD was total and I began to have my most disturbing symptom: anorgasmia. That was terrifying.

That has abated for now.

And just for my own personal science. This is a list of drugs that I took over the years and how I get they affected (or didn't), PSSD. Remember this list is just for me. YMMV.

Medications I'm sure can cause further PSSD

- VIIbyrd
- Other SSRIs

Medications in fairly sure can cause further PSSD

- Wellbutrin

Medications I don't think can cause further PSSD but I'm not sure

- Zyprexa
- Remeron
- Sleep medications
- Mood stabilizers

Medications that don't and haven't caused further PSSD

- Ativan
- Beta blockers
- Antibiotics
- OTC drugs and supplements
sylv
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by sylv »

Thanks for your detailed story. It reaffirms me how psychology ( correct mental stance ) and behavioural activities ( doing what you want despite dysfunction ) are important for recovery

PS. Almost all the drugs you have mentioned may lead to persistent / permanent neuropsychiatric syndromes. It's just a question how much damage could your body sustain.
6-Eggs!
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by 6-Eggs! »

As the above post. I beileve all drugs that interact with neurobiological processes can potentially lead to neuro-adaptation that can lead to PSSD and related syndromes.

I am a firm believer that PSSD is just a manifestation of a broader withdrawal/drug syndrome.

Mine was not caused by SSRIs, even though SSRI/SNRIs caused me severe SD(on top of what I already had) along with other neuro symptoms it, none of it was permanent as the side effects for the entire class of those two drugs made me too ill to take them long term so my symptoms cleared pretty quickly after stopping and I had no WD symptoms.

A combo of Rexulti and Moclobemide caused my severe case of withdrawal syndrome which was not only PSSD but a huge array of bazar functional neuro symptoms, hence they diagnosed me with FND but I know it's basically protracted withdrawal syndrome.

I am still in the process of tapering off in a careful and controlled manner and the Rexulti that trigged all this is now down to the last step in dosage before I stop. 0.016mg or about 130th of the normal dose. The Moclobemide I tapered latter and I didn't know it was also contributing to the whole mess, that I am down to 39mg or about 1/8th so still ages to go. And Moclobemide is horrible stuff to taper off as tiny single % changes have acute WD, but luckily they don't last any where as long as the Rexulti ones which last months.

I have been following a similar path. No supplements or other drugs, not even much caffeine or alcohol, not that I ever really dank anyway but even more so now.

Hard to say what % I am at now as I started off so bad that I had 5 admissions to ER in the last 18 months due to physical issues that confused the experts as they ultimately were originating from the brain but manifesting as physical changes/malfunctions on the body, hence FND.

But my sexual function is a lot better than I was all those years trying other meds or the initial SD and mental meltdown that was triggered by severe work burnout. So that's a massive plus. But since my symptoms change min to min now and all kinds of weird shit I can only say maybe 70% recoved on average? (overall, sexually and neurologically).

I am hopeful that with time after I am clear of all drugs that I will be recovered or enough that I don't know the difference from pre work burnout times to then.

Most of sexual symtoms aren't too bad now, just a weird stinging/mild burning discomfort at the moment ( was free of that for over a year but came back recently after getting below a certain Moclobemide dosage).
Sensation is pretty good actually and the sexual erotic sensation is great, but pressure when touching sometimes can feel off.

It's the soft glans syndrome that is the most devastating to me. It has improved a lot but not as consistent as I'd like and seems to be sensitive to changes, (mental and drug changes). I have had boughts of full-ish recovery but it's very unstable. It changes over minutes often. Used to be weeks, months before that and not functional at all for the first 6 months.

My ejaculation and orgasms are better 90% of the time pre depression/burnout or any drug periods. Kinda weird but I also never had a long term sexual partner before then and I had quite a few bad experiences dating/having sex with women so that could be part of it? I have an amazing understanding partner and she said we have sex like something out of a porn or something and never had that with her late husband or any of the guys between then and when we met. We almost always come at the same time, It's truly amazing!

This intimate connection has allowed me to overcome a lot of the psychological aspect of it which has in turn helped me physically.


So I am hopeful that recovery is coming my way but it's not easy sometimes. Just got to keep on keeping on I guess.
justprocess1
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by justprocess1 »

Well, unfortunately, I'm back.

Had to go back on meds. Every time I try to get back off of them, I become dysfunctional. Like really dysfunctional. I have a sleep disorder and I am bipolar and the only thing that helps me sleep is olanzapine.

With taking that, I have less ejaculate, less libido, and weaker erections.

I tried Viagra today, and I actually did work to some degree. Fortunately, my orgasms are still pretty good. And I do still have decent sensitivity. Unfortunately, I do not think I'm gonna be able to go the natural route anymore. Also, I do not know what will happen with a partner. Currently, my wife and I are separated and working on reconciliation. Nothing to do with PSSD though. She's always been understanding. But as I think I mentioned in my original title and post that my sex drive, functioning, and sensitivity all changed, once attracted to, emotionally connected to, and rewired with a partner. So things could be better than I know them to be right now. Even when I had my most excellent recovery and had sex up to three times a day, I would still have trouble by myself. Then I would go through these periods, where I would have numb sex with my wife, but then, after ejaculation from sex, it would rewire, and all the sudden I would have increased directions, sensitivity, and libido. So I'm still holding out some hope for that.

I may look into adding BuSpar to try with my libido.

I knew this would happen eventually. I got PSSD back when I was 23. I'm 36 now. I had a really great 13-year run where I had recovered quite a bit. I try to be grateful for a few things

1. My Orgasms are still good to great
2. My sensitivity is OK but variable
3. I can get decent erections sometimes, and Viagra does work for me.
4. When emotionally connected I can still feel attraction.

I really just want to be able to have sex with my wife. Even if I am a bit numb. That's all that matters to me.
justprocess1
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by justprocess1 »

With the olanzipine. It's really hard to get off. I may add Buspar with my doctor. Anyone had any luck with that?
prop
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by prop »

justprocess1 wrote: Sun Mar 05, 2023 2:20 pmI was devastated but I took stock and solace in a website called paxil progress which has since been shut down. There were plenty of cases of PSSD there and people recovered.
There was not a single case of someone actually taking something that cured them. Not one.

There was an individual who claimed that ayahuasca cured them, but they eventually admitted they were not fully cured.

The administration of paxilprogress.org was more tyrannical than even propeciahelp.com. It prohibited posts about drugs and steroids (whether they helped you or not), and the webmaster did not even have PSSD. My impression is, she was exploiting the site and its users to garner sympathy for her son's PSSD, and when it became less useful for this purpose she took it down without warning.

Ultimately the site's demise was a blessing in disguise, as it forced people to move on to other sites.
Archive of PSSD recovery stories: https://pssd.netlify.app/
justprocess1
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Re: I recovered 80% from PSSD and was happy, then took meds again

Unread post by justprocess1 »

prop wrote: Mon Sep 25, 2023 6:43 am
justprocess1 wrote: Sun Mar 05, 2023 2:20 pmI was devastated but I took stock and solace in a website called paxil progress which has since been shut down. There were plenty of cases of PSSD there and people recovered.
There was not a single case of someone taking something that cured them. Not one.

There was an individual who claimed that ayahuasca cured them, but they eventually admitted they were not fully cured.

The administration of paxilprogress.org was more tyrannical than even propeciahelp.com. It prohibited posts about drugs and steroids (whether they helped you or not), and the webmaster did not even have PSSD. My impression is, she was exploiting the site and its users to garner sympathy for her son's PSSD, and when it became less useful for this purpose she took it down without warning.

Ultimately the site's demise was a blessing in disguise, as it forced people to move on to other sites.

I take absolute issue with your quantification of recovery. I never recovered 100% but I never thought about PSSD because I had a virulent and exciting sex life that worked for me. I didn't think about it for 10 years. I went from total genital numbness, complete erectile dysfunction, and muted orgasms, to overwhelming libido great erections and great orgasms. Having sex three times a day sometimes. It took two years. It was a natural recovery. Many of the people on Paxil progress had similar stories. None of them involved taking drugs to correct would've been done. Now I am not for or against drugs for any such usage, but the claim that they did not have recovery stories is absolutely not true.
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