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.

Hi Melissa,
I would like to add my welcome here in the Brain & Nervous System group. I know you’ve met several member in the Mental Health group. I’m glad you’ve connected. But I see in this post, you’d like to focus on issues related to post-SSRI sexual dysfunction (PSSD). First, I’d like to direct you to this website http://rxisk.org/post-ssri-sexual-dysfunction-pssd/ that provides some basic information about PSSD, including:
– What is post-SSRI sexual dysfunction?
– Symptoms
– Diagnosis
– How common is PSSD?
– Is PSSD permanent?
– Case reports & study data
– Animal studies
– Other drugs and conditions
– Are there any treatments?
– References

I hope this helps you in your research. Getting beyond the social stigma is hard. We’re listening.

Liked by melissa333

REPLY

Thank you Colleen. I am familiar with the site and there doesn’t seem to be many treatments for it. I am working with a new doctor now and I might try the Mayo Clinic in the future. I am pleased that there is at least information out there about this even though I am very saddened by the unfortunate events that I feel cause this for me. I have an interest in brain health and the nervous system in general so I will keep up with this forum for ideas about health and healing the nervous system. Thanks again -Melissa

REPLY

Melissa, for when the time may come to contact Mayo Clinic, here are the contact numbers at all 3 campuses in MN, AZ and FL http://mayocl.in/1mtmR63
Keep us posted and thank you for bringing this topic to Connect.

Liked by melissa333

REPLY

@melissa333 Have u found relief?

REPLY

Hi, @challen. Apologies for the delay. Welcome to Mayo Clinic Connect. I appreciate your support for other members in this post-SSRI sexual dysfunction (PSSD) discussion.

Wondering if you may have experienced PSSD, as well?

REPLY

Hello. My story is quite similar to yours- I was on citalopram for 18-24 months and accidentally quit abruptly (missed 3 or 4 doses in a row). I had a horrendous withdrawal- crushing depression and complete loss of sex drive. it was comparable to losing one of my senses. In addition, I was unable to enjoy anything- music, exercise, actives, anything. I had no concentration and was unable to initiate any activities. My mind was in a constant fog. Look up "neuroleptic deficit syndrome"- this is a perfect description of my symptoms, with the loss of libido on top of it. This was in 2012. Since then, I have had some recovery, but I never got back to my old self.

I know what you mean about doctors not believing you. I have seen 5 or 6 psychiatrists, and all but one told me "that doesn't happen". Also, 5HTP has a lot of similarities to SSRIs; its easy to underestimate the potency of supplements. They're sold over the counter without a prescription, how bad can they be?

I believe that at least part of my problem was due to dopamine deficiency. I don't know why withdrawal would cause this or why it would be permanent. There is also a hormonal aspect. There is an inverse relationship between dopamine and prolactin, and my prolactin levels were indeed quite elevated. I don't know how this applies to women.

My anxiety and depression were unbearable, so I had to go on escitalopram. It helped with those but did not effect my PSSD. I have had some success with Wellbutrin, dopa mucuna, maca, and yohimbine. The first three are all dopamine agonists. There is some research out of Harvard on women with PSSD showing the efficacy of maca, particularly in post-menopausal women. dopa mucuna/mucuna pruriens fixed my problems with motivation, concentration, and anhedonia.

I hope you find this helpful.

REPLY
@jbp26

Hello. My story is quite similar to yours- I was on citalopram for 18-24 months and accidentally quit abruptly (missed 3 or 4 doses in a row). I had a horrendous withdrawal- crushing depression and complete loss of sex drive. it was comparable to losing one of my senses. In addition, I was unable to enjoy anything- music, exercise, actives, anything. I had no concentration and was unable to initiate any activities. My mind was in a constant fog. Look up "neuroleptic deficit syndrome"- this is a perfect description of my symptoms, with the loss of libido on top of it. This was in 2012. Since then, I have had some recovery, but I never got back to my old self.

I know what you mean about doctors not believing you. I have seen 5 or 6 psychiatrists, and all but one told me "that doesn't happen". Also, 5HTP has a lot of similarities to SSRIs; its easy to underestimate the potency of supplements. They're sold over the counter without a prescription, how bad can they be?

I believe that at least part of my problem was due to dopamine deficiency. I don't know why withdrawal would cause this or why it would be permanent. There is also a hormonal aspect. There is an inverse relationship between dopamine and prolactin, and my prolactin levels were indeed quite elevated. I don't know how this applies to women.

My anxiety and depression were unbearable, so I had to go on escitalopram. It helped with those but did not effect my PSSD. I have had some success with Wellbutrin, dopa mucuna, maca, and yohimbine. The first three are all dopamine agonists. There is some research out of Harvard on women with PSSD showing the efficacy of maca, particularly in post-menopausal women. dopa mucuna/mucuna pruriens fixed my problems with motivation, concentration, and anhedonia.

I hope you find this helpful.

Jump to this post

Hi, @jbp26 – welcome to Mayo Clinic Connect. That sounds like a very challenging journey, with the horrendous withdrawal from citalopram with crushing depression and loss of sex drive. Glad to hear that escitalopram has now helped with your anxiety and depression.

Hoping that @challen will return with some input, and also hoping that @merpreb @jakedduck1 @gailb and @parus may have some input for you.

So, with the buproprion (Wellbutrin) and the supplements you mentioned, has your post-SSRI sexual dysfunction (PSSD) improved? Have you considered going to a specialist in sexual dysfunction who might have more familiarity with this condition?

REPLY
@lisalucier

Hi, @jbp26 – welcome to Mayo Clinic Connect. That sounds like a very challenging journey, with the horrendous withdrawal from citalopram with crushing depression and loss of sex drive. Glad to hear that escitalopram has now helped with your anxiety and depression.

Hoping that @challen will return with some input, and also hoping that @merpreb @jakedduck1 @gailb and @parus may have some input for you.

So, with the buproprion (Wellbutrin) and the supplements you mentioned, has your post-SSRI sexual dysfunction (PSSD) improved? Have you considered going to a specialist in sexual dysfunction who might have more familiarity with this condition?

Jump to this post

Wellbutrin and other dopamine supplements have essentially cured my symptoms of anhedonia and brain fog. I'm productive and can enjoy things again. They have helped with PSSD to an extent. I can have sex but it can be difficult for me to stay engaged mentally. I don't have feelings of passion or desire. Before this, I could easily have sex every day and would get frustrated and irritable if I went a day or two without. Now, it doesn't really matter.

I saw a sex therapist for a while, but it wasn't much help. I think my problem is physiological. I have seen several psychiatrists, but most of them don't believe that what I experienced is possible. I have been considering seeing an endocrinologist as a next step. I haven't searched for any doctors specializing in sexual dysfunction but that is a good idea.

Liked by Lisa Lucier

REPLY
@lisalucier

Hi, @jbp26 – welcome to Mayo Clinic Connect. That sounds like a very challenging journey, with the horrendous withdrawal from citalopram with crushing depression and loss of sex drive. Glad to hear that escitalopram has now helped with your anxiety and depression.

Hoping that @challen will return with some input, and also hoping that @merpreb @jakedduck1 @gailb and @parus may have some input for you.

So, with the buproprion (Wellbutrin) and the supplements you mentioned, has your post-SSRI sexual dysfunction (PSSD) improved? Have you considered going to a specialist in sexual dysfunction who might have more familiarity with this condition?

Jump to this post

I would also like to welcome you to Connect @jbp26 . I'm sorry that you are having so much trouble. Many SSRI's lower or diminish sexual drive. After you stop taking it should eventually come back, I've been told. Is your withdrawal from citalopram guided by a physician or are you doing this by yourself? If your withdrawal side effects have been horrendous than that would lower your sexual desires too.

Liked by Lisa Lucier

REPLY
@merpreb

I would also like to welcome you to Connect @jbp26 . I'm sorry that you are having so much trouble. Many SSRI's lower or diminish sexual drive. After you stop taking it should eventually come back, I've been told. Is your withdrawal from citalopram guided by a physician or are you doing this by yourself? If your withdrawal side effects have been horrendous than that would lower your sexual desires too.

Jump to this post

Yes thats what all the psychiatrists have told me. Unfortunately it wasn't the case at all. This incident happened over 6 years ago and I never recovered. The initial withdrawal that caused this in the first place was accidental. After withdrawal, I went back on citalopram and it didn't help at all. I switched to Effexor which was even worse, then no medication at all for a few months. Still no change.

Since then, I had to go on back escitalopram to manage my anxiety and depression. It improved my mood but had no effect on desire. Its worth noting, when I was originally on citalopram it had no effect on my sex drive.

REPLY

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.

REPLY

@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.

REPLY
@jbp26

@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.

Jump to this post

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.

REPLY
@markc2008

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.

Jump to this post

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

REPLY
@markc2008

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

Jump to this post

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.

REPLY
Please login or register to post a reply.