Possible PSSD symptoms

Posted by melissa333 @melissa333, Oct 17, 2016

Hello all I'm new to this forum. I have been suffering with these symptoms for over a year now I will explain. I don't know exactly what brought all of this on but I was taking a Serie 2 no chick supplement called 5-HTP for two-and-a-half years which I went cold turkey off of in January. I have lost all sensation in my genital region. I went to a neurologist I have gotten X-rays and MRIS it seems to be something neurological but they can't quite figure it out. I've had all my blood work done I've been tested by several different doctors everything is coming out normal so I think this has to do with a neurological disorder I'm not exactly sure how to describe what happened to me but I do know that I have these horrific symptoms that don't go away. I had a very normal active sex life before all this happened when I went cold turkey off of the 5-HTP supplement I woke up one morning and I was completely numb my entire genital region has no feeling in it I couldn't even feel when I had to urinate that has lately returned in the past year but the erogenous Sensations any type of pleasure from that area is completely gone and sex is completely lifeless. There's so much Social stigma surrounding this issue I have been told I am crazy I've been told that I'm not experiencing this nobody has any answers I am sending out a plea to this community if anyone has heard of this disorder happening in anybody else please let me know. I know that mine was not caused by an SSRI type drug reaction but I was taking a serotonergic supplement for a long. Of time that is not been tested for long-term use and I feel like maybe something happened. I know there are risks with any supplements and pharmaceuticals that you take but I was not expecting this big of a risk. It has affected my social life and has affected my sex life my life with my partner that I'm completely in love with it's causing me severe PTSD anxiety depression and I am unable to function in reality I don't have a job I don't see my friends anymore I've made a complete 180 from the person that I used to be I feel like my life was taken from me in a way. I don't know who to turn to I don't know what medications to get on I'm so depressed I can barely get out of bed for an entire year I lost a lot of weight I used to be very athletic and very motivated in my life. I have a master's degree I was on track to have a very fulfilling life with my partner and my education and my career and everything has basically stopped because I feel like my life force is gone. I know this is very hard to understand people who have never been through this this is more than just a simple sexual dysfunction this is almost like a loss of a drive for life and it's a complete numbness in your brain and genitals both there's just no connection there's no desire for the life spark there's no desire for the creative Spark It's almost like it's just been erased. I know I am suffering from depression but does depression cause severe numb genitals like a dentist needle look like anesthetic. My symptoms have maybe gotten 3% better since January when I was completely numb and I couldn't even feel urination now I can at least feel urination but none of my libido arousal or general feelings have returned it's almost like that entire area is just rubbery and numb. I know many of you may have never heard of anything like this and this may be disturbing for you but this is actually a disease that can happen to people and I think we need to raise more awareness about it because doctors and psychiatrists and therapists simply do not believe this is possible which in fact it is because it is a neurological and brain disorder that can be brought on by pharmaceutical drugs and supplements in my opinion and from my experience. There are several forms on the internet that people are trying to Cobble together and find Hope and help it's a very desperate situation for people who have this disorder. Any advice or ideas that you have are greatly appreciated please don't shut me please don't shame me please don't tell me I just have depression because I was highly active before all of this and I actually took 5-HTP for a nerve pain issue that I had and not for depression. I never had true depression until after I got pssd and became completely immobilized and disabled emotionally. I'm not trying to scare anybody for medications I think medications definitely have saved my life and certain ways I know that antibiotics are super important there's cancer medications there's things that people need and I know that people do need mental health drugs and I'm not demonizing them in the least I am just trying to find information on how and why this happened to me and how I can get better that's my only goal my goal is not to demonize the pharmaceutical industry or anything like that I am simply a human being who wants to heal. Thank you for listening and thank you for reading my post.

Interested in more discussions like this? Go to the Depression & Anxiety Support Group.

@lt2020

I wanted to post here because it is very rare to find someone else who was on Viibryd, let alone on a low dose, and is having similar symptoms. I’ve noticed via other PSSD forums and the comment sections of PSSD articles that those of us who took Viibryd seem to have the worst of sexual dysfunction appear after discontinuation. Others with PSSD from traditional SSRIs simply have a continuation of symptoms that were present while on their medications. I am not sure if this is in some way related to the 5HT1a partial agonist function of the medication.

I was on 10mg for 10 months and it was sufficient despite my very serious acute depression due to the loss of my partner (by the way, 5mg is the lowest I’ve heard anyone take..that’s literally half the pill of the starter dose). While on it, I had on and off issues with insomnia, the common gastro issues, and pretty mild sexual dysfunction (noticeably numb penis when erect with pleasureless orgasm for the first few weeks, then an ~80% return to baseline for the remaining 9 months). I tapered for 2 months, cutting pills, and came off the Viibryd without any difficulty.

3 months later, my symptoms started to worsen. Instead of returning to baseline from 80% functionality, I’ve dropped to ~50% functionality. I have no libido, significant reduced semen volume, and while I am able to orgasm with manual stimulation, I have a very hard time maintaining an erection during intercourse. Even with manual stimulation, the second I stop, I lose the erection within a few seconds. I’m trying to be balanced and consider psychological factors such as stress not anxiety, but I am actually in a good place in my life right now.

By the way, did you have any periods of itchiness/stinging sensation after discontinuation? I had a couple of such windows and it was hell!

Given the low prevalence or at least disclosed low prevalence of our symptoms, and the complexity of the symptoms, I doubt any major work will be done. Mayo is know to have a great publicity machine, hence this forum and many other Mayo interfaces, but our concerns will just get lost. I live in NYC and have attempted to work with neurologists and neuropsychiatrist affiliated with Cornell Weill and they looked at me like I was making things up.

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You are right on several things. One, you don’t hear from many people that were on viibryd. I was on I believe 10mg, although I think at one point I was on 20mg. I was on it for years and quit it cold turkey. I also had no issues while taking it. Everything started when I stopped it. About 2-3 weeks after stopping and it progressively got worse and it’s been up and down since. I initially had tingling all over the body, muscle twitches constantly and a sensation in my throat when swallowing along with sexual issues. I can orgasm just fine but I have the same erection issues. When I can manually get an erection it goes away quick. A lot of times I have a hard time even getting an erection. I have numbness and loss of pleasure there. I can’t get an erection a lot of the time masturbating or sex without viagra or cialis. I did just have full blood work up and my hormones are jacked up now from it I think. My Testosterone and free testosterone are below normal and I’m 37. I’m exploring this route and had some improvement first week but second week I got worse than I was prior to starting treatment. I’m not sure what to do. Your right doctors don’t want to believe us. I hear depression thrown around a lot and I’m in a good spit in my life beyond this. I wander if we reached out to places as a group if we could get anywhere? I’m in Tennessee. I’ve seen neurologists as well and for no where. I’ve also recently developed weird shrinkage when flaccid and shrinkage in scrotum like I’m in cold water or something all the time that comes and goes. I guess it could be lack of blood being sent there with no libido and some numbness.. how long have you been like this? I’m at about ten months..

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I also have zero libido and oddly I have no reaction to visual stimuli like nudity

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I’m at the end of month 6. But for me, the tingling and the the brunt of the sexual dysfunction didn’t start until month 4 after discontinuation. I want to believe that it’s part of the body readjusting and then we freak out about it (read/have previously read about PSSD). My itching/stinging took 2 whole months. The sore throat is in line with what to expect.

I’ve heard once or twice about the shrinkage. I don’t know if that’s really possible though. Are you sure? Our minds can play games with us. How low is your free testosterone? That’s a huge problem that should be corrected before anything else. I’ve had a noticeable decrease in fluid and which makes me wonder about my testosterone.

I respond to visual stimuli in my mind but I don’t get the urge to want it, if that makes sense.

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Oh also, I was prescribed Trazadone at 50mg to help me sleep during the itching. Post Trazadone my morning elections suddenly returned after being missing for months since the first days of discontinuation from Viibryd. I wonder if taking more Trazadone will bring back full sexual function...

What’s your username of the forum, markc2008?

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@lt2020

I’m at the end of month 6. But for me, the tingling and the the brunt of the sexual dysfunction didn’t start until month 4 after discontinuation. I want to believe that it’s part of the body readjusting and then we freak out about it (read/have previously read about PSSD). My itching/stinging took 2 whole months. The sore throat is in line with what to expect.

I’ve heard once or twice about the shrinkage. I don’t know if that’s really possible though. Are you sure? Our minds can play games with us. How low is your free testosterone? That’s a huge problem that should be corrected before anything else. I’ve had a noticeable decrease in fluid and which makes me wonder about my testosterone.

I respond to visual stimuli in my mind but I don’t get the urge to want it, if that makes sense.

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I don’t even respond to visual stimuli In my mind. Thoughts don’t turn me on. I am sure on the shrinkage and some days it’s fine some days it isn’t. But I am sure. My free testosterone is 4.8

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@lt2020

Oh also, I was prescribed Trazadone at 50mg to help me sleep during the itching. Post Trazadone my morning elections suddenly returned after being missing for months since the first days of discontinuation from Viibryd. I wonder if taking more Trazadone will bring back full sexual function...

What’s your username of the forum, markc2008?

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I am markc2008 that’s it. It could help. I had some improvement on wellebutrin and a little on buspirone. But it’s been bad longest year of my life

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How long were you on the Viibryd in total?

I wouldn’t say thoughts turn me on, but I mentally acknowledge a hot body or something enticing, if that makes sense? Like it piques my interest without any sort of genital tingle or sexual urge.

Maybe I am unsure about the forum that you guys were talking about. Which one?

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@lt2020

How long were you on the Viibryd in total?

I wouldn’t say thoughts turn me on, but I mentally acknowledge a hot body or something enticing, if that makes sense? Like it piques my interest without any sort of genital tingle or sexual urge.

Maybe I am unsure about the forum that you guys were talking about. Which one?

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Pssd forum. I mean I can still acknowledge someone is hot per se, but it does not turn me in like it should and I cannot use that to get turned on. And seeing a naked woman doesn’t arouse me anymore like it should. Just really frustrating issues

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Like everything is super dulled down as far as arousel and being turned on.

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Are you still working with the psychiatrist they prescribed the Viibryd? What does she/he say?

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