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Possible PSSD symptoms
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.
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Have you had any improvement? This is a real problem. I’m on the pssd forum as I have been having similar issues. I was taking viibryd(Vilazodone) for a couple of years. I got switched to it from sertraline as it has less side effects. The whole reason I got on sertraline was anxiety from a sick spouse and honestly the main reason was PE. When I was on the viibryd I never had any side effects . However, June of this year I quit it cold turkey. I didn’t realize how big of a deal that was. I just stopped once prescription needed to be filled as I didn’t think I needed it. I’m happily married and happy. About a week after stopping it I had erectile dysfunction, my scrotum shrivels up drastically a lot like I’m cold but predominately stays that way, I have lossed the same pleasurable sensations down there and I have zero libido. I’ve noticed I don’t even respond to sexual stimuli such as nudity. I never had any issues prior. I tried buspirone to help and I did indeed get a week long window of Complete improvement about three weeks in but then it went right back away to baseline. After a few more weeks I tapered off slowly and stayed off everything a couple of months with no change. My dr then suggested wellebutrin. I tried it for a month and had no change, yet it was extended release so as I went to every other day to start tapering I noticed on off days my libido and erection quality came back. I slowly tapered the wellebutrin and had significant improvement for almost a month. Then just like previously the everything went back to being bad again. I’m not sure what mechanism would give me temporary improvement but I know that it’s related to levels in the brain with some of the meds helping for a time, I just don’t understand why it can’t be corrected. It’s now been nine months and I’m no better. I’ve actually started to have some shrinkage and I’m not sure if that’s tied to lack of libido or what. The only thing that helps is Viagra or cialis temporarily ofcourse.
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1 Reaction@markc2008 it was the same for me. I accidentally quit cold turkey because I had no idea how serious it was. I thought id resume whenever I got around to picking up my medication.
you can look me up on the pssd forum for more detail (username: sovietxrobot). my impression is that whatever damage withdrawal did, its permanent. it can be mitigated with medication but I can't function without it.
what does of buspirone were you on? its pretty common to get a boost the first few days, and then it levels off. did you try increasing the dosage? its strange that Wellbutrin had a negative effect on you, I have no explanation for that. If viagra helps you, thats actually a good sign- when I was at my worst, I had no response to stimuli, so viagra wasn't able to do anything.
I think you should go have a physical exam by a urologist, and they can order a hormone panel for you. that should be the starting point. see how increased dosage of buspar effects you. you can also try nitric oxide or related supplements (l-citruline, l-arginine)- PSSD and SSRIs can deplete NO, which is an important part of sexual response.
Thanks yeah I’m on the pssd forum as well. I do take citrulline but not sure what it is doing to help. The buspirone did not help at all at first. It took several weeks and then the effects of it helping lasted a week. The wellebutrin sort of made what was already weak attempts of an erection worse, but on days I wouldn’t take it to start tapering everything was way better. I can’t explain what caused this though. I have very very little response to stimuli. Somehow the viagra and cialis is enough to work with manual stimulation. What medication helps you? Has your reactions to stimuli or libido improves with time? I hope it’s not permanent.
I was taking 5mg twice a day which is low. I didn’t try to increase the dose after it quit working. I gave it another week and then started tapering. I also have not tried to reinstate the viibryd. Both of these options I have considered but I’m also scared to make the situation worse. I see small improvements at times but it’s not always the same. I have good days and bad it seems. If things get worse or doesn’t improve I will probably give buspirone a chance again and try a higher dose, if nothing improves reinstating viibryd would be last thing
I take a whole stack. Buspar, lexapro, Wellbutrin, and many other supplements. My thread on pssdforum has details on each substance, dosage, effects, and backing research.
Has Mayo evaluated you for Chronic Pain Syndrome and Central Sensitization Syndrome?
Unfortunately this does sound like PSSD. People have reported developing it from 5HTP. And indeed, its very difficult to get a doctor to even hear you out. The first step is to get a physical examination by a urologist and a hormone panel. You should also start seeing a therapist. If you can say you have tried all of these, other doctors will be more likely to help you. After that, see a psychiatrist. In my experience, the only way to recover from PSSD is with more medication. Wellbutrin and buspirone are both helpful in treating PSSD, and some people benefit from SSRI reinstatement.
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1 ReactionI would agree anything that messes with 5ht1a I would assume can cause same things. Definitely check hormones and make sure everything is in line. Some improve naturally but unfortunately it’s usually with extended time. I’m at nine months. Buspirone and wellebutrin each both helped me some temporarily but positive effects went away. We are all hoping drs start recognizing and finding fixes for what is happening.
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.
That does indeed sound like PSSD. Your experience with medical professionals is unfortunately the norm, most doctors are completely dismissive and will tell you that what you are experiencing doesn't happen. Its truly disheartening.
I never had any itching or stinging.