PSSD Post-SSRI sexual dysfunction

[Spruce30]

No that's not correct. Charlie Brown regained most of his sex drive after 3 years, but a lot of other aspects of his PSSD took a lot longer to recover. He said it took him 7-9 years to feel fully recovered from PSSD. I have private messaged him about his PSSD many times.

 

I am almost certain altostrata took 9 years to fully feel recovered from PSSD, but a lot of aspects of her PSSD recovered along the way before the 9 years.

 

Yes Mr B was off all drugs for 12 years before he fully recovered.

 

I think there is a lot of hope for people with PSSD to fully recover, as sometimes it can take a very long time for full recovery. But like anything in life there is no guarantee. For some it might be permanent, but I think most eventually do recover.

 

Although benzodiazepines can cause sexual problems that persist for years after you come off them, SSRI's I feel are more notorious for doing this, and from what I have heard, persisting sexual dysfunction from SSRI use I.e PSSD often is particularly more protracted in nature. 

 

 

[potions]

On 2/9/2018 at 3:53 PM, bruno2016 said:

hello

 

I have been off since 10/2011 and i must follow a pretty strict lifestyle to remain balanced and feel well: I eat a prima/wahls diet (like paleo--no dairy, grains, moderate legumes, etc), I drink no alcohol ever, no drugs (and very rarely over the counter meds), low sugar, 8 hours a sleep, exercise, and certain nurtients i found essential (like zinc and b6--look into carl pfeiffer), etc. I did have some sexual issues but those are all gone. In fact, i have lots of great sex now and no sexual issues. I do get nervous and that affects my initial performance but you know thats all in the head for me. 

 

I do feel traumatized still but its subsided over the years. Getting out in nature and LETTING go of the past has been one thing that helped me move beyond the trauma. 

 

Right now my life is good and believe others can also heal up. I still have bad days which usually only last a few hours or so but life is good. I also have a job i like and more plans for the future.

Did you have PSSD? If so, long did that persist after discontinuation?

[Spruce30]

Here is the link to Mr B's success story. He doesn't mention about his sexual problems in the success story, but I have personal messaged him many times, and I can promise you he had almost non existent libido and genital anaesthesia for 12 years, and it eventually completely resolved.

 

http://www.benzobuddies.org/forum/index.php?topic=178596.0

[Spruce30]

Just realised at the top of page 19 Mr B mentions about the sexual issues.

[potions]

Thank you for this, Spruce. I appreciate your reassurance—I know you’re also suffering intensely from pssd so it is kind of you to give me this hope even with your own suffering.

 

I read Mr. B’s recovery story and it fills me with hope, as I also have other symptoms that he mentioned he had (such as “severe inner restlessness” and “feeling of jumping out of my skin”) so it’s reassuring on more than one level. One thing though, is he said he recovered from PSSD gradually. People on my Facebook group (who are 8 years/14 years/6 years out etc) seem to have hardly recovered at all since they came off SSRIs and they still have total genital numbness. So I don’t believe it’s likely for those people to recover, even if Mr B recovered after 12 years. He likely didn’t have total genital numbness for 11 and then suddenly everything returned on the 12th year (at least I don’t think that’s what happened.)

 

Anyway, all we can do is hope that this horrible condition will go away given enough time. Thanks to you and 1Day and others on here, I have more hope than I did previously about PSSD. Thank god for the internet because pssd is so isolating and I lost my best friend due to his ignorance about this condition (he kept yelling at me to “see a doctor!” [he doesn’t realize they are clueless about ssri WD and PSSD...] and that I need ssris because I’m insane. Pshh. The reason I’ve been suicidal etc is 100% due to those poisonous pills in the first place. He doesn’t seem to get that and trusts this f*#%ed up mental health/big pharma industry. So yeah.) But thank you spruce and 1Day, I appreciate you guys. I hope all of us recover from PSSD soon. I know how horrible it is.

[johnson]

Thanks for linking that story spruce. 12 years is a long time though. But at least he fully recovered. I guess it's possible we'll get there too. 

[potions]

Johnson, do you believe 5HTP has been the cause of your PSSD?

[Spruce30]

Hi potions. If i remember correctly Mr B told me that the PSSD/ sexual problems resolved in the 12 th year,  and he didnt see much if any improvement in that or a number of other symptoms until the very end. He told me the symptoms lessened in the 11 th year, and then almost spontaneosly completely resolved in the 12 th year.

[johnson]

Potion, 

 

I think 5htp and all other mind altering chemicals I took over the years including st. John's wort, Paxil, Wellbutrin, bupropion caused this for me. I also took a bunch of other supplements and took my health for granted. It all ended up creating havoc for my body/mind/nervous system and it couldn't take any more. 

 

There is also a success story of lossleader on this site who said that his pssd was the last thing to recover for him. But he did fully recover from it. 

 

Edited March 15, 2018 by ChessieCat
added link to post about lossleader

[potions]

Thanks for the link to lossleader’s story—I’ve read it before and it’s encouraging. I still wonder if I’ll recover or not, given the number of 8-23 year sufferers there are out there. But I guess all we can do is hope. Cheers

[Spruce30]

How many 8- 23 year sufferers do you know of potions?

[potions]

I know quite a few on pssdforum, quite a few on the facebook group, and quite a few under youtube comments, rxisk comments, and I personally know one person who took SSRIs and his sex drive has not come back in the 8 years since he stopped. There are a few 8+ year sufferers on here too, I believe Root1121 is one of them and I am certain he is not the only one.

[Spruce30]

When you say quite a few can you give me a rough amount? Can you give me a link to the facebook group? Do you know if any of these 8 years + people are still on any kind of medication?

[Zant808]

27 minutes ago, Spruce30 said:

When you say quite a few can you give me a rough amount? Can you give me a link to the facebook group? Do you know if any of these 8 years + people are still on any kind of medication?

 

I'm a 20+ year sufferer of PSSD and that's how I got onto all of these horrible cocktails of other psych meds.

[potions]

Sure. Here is the link to the group. 

https://www.facebook.com/groups/1813492682283042/

I think alto also posted something with the link to the group here 

in case that first one doesn’t open.

 

I don’t know for sure if they are still on any medications or not, but I am fairly certain one of the admins of pssdforum has stayed away from all ssris/maybe all psych meds and has had pssd for (25?) years. I don’t know what his symptoms (still) are.

 

I’d say I have read roughly 20-25 accounts of people suffering from pssd for 8 or more years. I am uncertain about what medications they might still be taking if any or if they have been on and off ssris since initially getting pssd. I know someone from the group has been suffering for 14 years, and he has not been on ssris since he came off fourteen years ago.

 

A young woman in the group has been off ssris since 2010 and has had pssd ever since. A different man on the group has been suffering for 8 years. My psychologist’s patient’s friend has been suffering for 8 as well. I personally just poured through 6 accounts of people suffering 8+ years out from pssd but cannot disclose their personal information. One 15 year sufferer, one 10, one 9, another 9 year-er. . . Been_too_long has been suffering for 8 years. A RxISK commenter said he’s been suffering for 18 years from pssd. 

 

I’d say all in all I’ve seen about 20 reports of people suffering 8 or more years out. I can’t say for certain but feel like it’s around that range. Maybe more.

[Spruce30]

What drugs are you on now Zante 808 if you don't mind me asking?

[Spruce30]

Thanks for the link potions. That's depressing news if so many people are that far out with little to no recovery. I must say though most people I have heard of who are that far out with no sign of recovery have been on other prescription drugs that affect sexual functioning.

[potions]

You’re welcome Spruce. I hope you are right. Have you personally messaged people who are that far out? And they told you they have taken drugs that have affected sexual functioning since stopping the ssri that gave them pssd?

[potions]

On 3/14/2018 at 2:12 PM, Zeipii said:

I think the worst thing is the emotional anhedonia, which is directly related. Pssd alone is terrible, but this whole suffering is very hard. I got severe pssd (including genital sense loss) and anhedonia after 2 weeks of bupropion, which is falsely marketed safe. It can be equally bad. That was 11 months ago, and nothing has returned. My anhedonia is so severe I have even lost my job and basically losing everything in life. I would like to be optimistic, but how could one suddenly heal after years in a non-linear or gradual way? Any thoughts? 

Wow, I am honestly quite surprised that you have PSSD (or the same symptoms of PSSD) after bupropion. Did you take an ssri before or after that? I didn’t know bupropion could also cause genital anesthesia once the drug was discontinued. I don’t know how one could suddenly heal after years in a non-linear or gradual way. I think most do improve over the years but I cannot say how much. Maybe those long term sufferers have improved slightly but not to a notable amount and still have all symptoms of pssd.  Apparently a man recovered after 12 years of pssd and his recovery happened fairly spontaneously. I am not entirely certain how it’s possible but I think it is. I just don’t know how likely it is. 

[Spruce30]

yeah I have spoken to at least 2 maybe 3 people that far out, and one was taking a tricyclic antidepressant, and the other was taking an antipsychotic and viagra if I recall correctly. All of those drugs can cause sexual dysfunction, especially if taken long term.

 

Mind you 20 people that far out. It makes you think at lest some of them might have been drug free the whole time. I hope they are the minority when it comes to PSSD.

[Spruce30]

* least

[Spruce30]

Zante 808, I can see you are on Depakote, klonopin and anafranil. All of those medications can cause sexual problems. It could be very likely that the medications you are on are really holding back from healing from your sexual problems.

[potions]

Well that’s good news about the 2 to 3 long term sufferers you have spoken to. I personally am also discouraged by people 4, 5, and 6 years out who say they have had no improvements. I’ve read quite a lot of those too. They are all over pssdforum

[Spruce30]

That is a worry yes, RE people 6 years out with no improvement. But we must also remember the success stories, and that a lot of people have recovered too. What did your doctor say when you told them you had developed PSSD potions?

[potions]

My PCP didn’t believe me (I could tell) and had that “honey that’s impossible” look on her face while she referred me to a gynecologist. I spoke to three or so psychiatrists about it, one of which acknowledged it and noted it but didn’t have any suggestions. The other just looked uncomfortable, and one yelled at me and blatantly challenged me “HOW would that be possible?!” “I have NEVER in my 20 years of practice heard of such a thing!” My psychologist, however, emphathises and hopes I heal. He told me that a patient of his told him that his (the patient’s) friend got off SSRIs but his sex drive never returned so my psychologist is glad I told him about PSSD. None of them had anything helpful to say at all however

[Zeipii]

5 minutes ago, potions said:

My PCP didn’t believe me (I could tell) and had that “honey that’s impossible” look on her face and referred me to a gynecologist. I spoke to three or so psychiatrists about it, one of which acknowledged it and noted it but didn’t have any suggestions, the other just looked uncomfortable, and one yelled at me and blatantly challenged me “HOW would that be possible?!” “I have NEVER in my 20 years of practice heard of such a thing!” My psychologist, however, believes me and empathizes. He hopes I heal and told me a patient of his told him his friend got off SSRIs but his sex drive never returned so he’s glad I told him about PSSD. None of them had anything helpful to say at all

all denying doctors are lying criminals. they know this, but the ratio is still so small, that they think they can get away. How can they be blind to the thousands of evidences we have found on the net. Criminal. And how often do these poisons even help the original problem other than placebo? I would say rarely, time heals depression and we have all been unlucky trusting these crooks. 

[Spruce30]

I had similar experiences. Most were unbelieving. Although I found one GP who used to be an ex psychiatrist who believed me, as he had a few ex patients who developed PSSD.

 

He told me he had a number of ex patients who developed PSSD, and that they also recovered, but he said it took them "years" to recover.

 

I tried to ask him to be more specific RE how many patients, and how long they took to recover, but he hated talking about PSSD, and would change the subject at any opportunity he could get.

 

You should send some stuff from the Rxisk website about PSSD to your ex doctors and psychiatrists. It makes it harder for them to dismiss it, and might change their mind RE PSSD not being real etc.

 

 

[Zeipii]

42 minutes ago, potions said:

Wow, I am honestly quite surprised that you have PSSD (or the same symptoms of PSSD) after bupropion. Did you take an ssri before or after that? I didn’t know bupropion could also cause genital anesthesia once the drug was discontinued. I don’t know how one could suddenly heal after years in a non-linear or gradual way. I think most do improve over the years but I cannot say how much. Maybe those long term sufferers have improved slightly but not to a notable amount and still have all symptoms of pssd.  Apparently a man recovered after 12 years of pssd and his recovery happened fairly spontaneously. I am not entirely certain how it’s possible but I think it is. I just don’t know how likely it is. 

it is not a surprise. all these poisons can damage our nervous system more or less.

[Spruce30]

Zeippi I agree. A lot of doctors have shares in the drug companies as well. Its a really grubby business, where everyone rubs each others back, and they all cover for each other, when patients get harmed.

[potions]

I find this sort of hilarious. The incredible irony. The very people who are expected to help our health harmed it more than we could ever imagine and have no abilities to fix the damage at all. “Anti” depressants caused many of us the most severe depression we’ve ever had in our lives. The sickening irony 

[Zeipii]

3 minutes ago, Spruce30 said:

I had similar experiences. Most were unbelieving. Although I found one GP who used to be an ex psychiatrist who believed me, as he had a few ex patients who developed PSSD.

 

He told me he had a number of ex patients who developed PSSD, and that they also recovered, but he said it took them "years" to recover.

 

I tried to ask him to be more specific RE how many patients, and how long they took to recover, but he hated talking about PSSD, and would change the subject at any opportunity he could get.

 

You should send some stuff from the Rxisk website about PSSD to your ex doctors and psychiatrists. It makes it harder for them to dismiss it, and might change their mind RE PSSD not being real etc.

 

 

they know it is real, but lie about not knowing. there is tons of evidence and why not believe your patient in the first place? do the real doctors do that (non-pdocs)? No they don't. Pdocs are scared for their jobs in their lousy pseudo profession that should not exist and have to lie in defence,

[potions]

8 minutes ago, Zeipii said:

they know it is real, but lie about not knowing. there is tons of evidence and why not believe your patient in the first place? do the real doctors do that (non-pdocs)? No they don't. Pdocs are scared for their jobs in their lousy pseudo profession that should not exist and have to lie in defence,

I actually almost hope this is true, as it has angered me more than I can even describe to have health “professionals” deny the very thing that has caused me such an immense amount of suffering and greatly reduced my quality of life. I hope they all know it exists but are too self centered to admit that.

[Zeipii]

On 15/03/2018 at 1:16 PM, johnson said:

Potion, 

 

I think 5htp and all other mind altering chemicals I took over the years including st. John's wort, Paxil, Wellbutrin, bupropion caused this for me. I also took a bunch of other supplements and took my health for granted. It all ended up creating havoc for my body/mind/nervous system and it couldn't take any more. 

 

There is also a success story of lossleader on this site who said that his pssd was the last thing to recover for him. But he did fully recover from it. 

It's just too bad they destroyed our only life. Beside my health as a consequence I have lost my work and everything I had before. 

[potions]

Spruce, do you believe you will recover from PSSD?

[powerback]

Hi I agree wholeheartedly ,the amune system  and central nervous system  is thrown out of whack because of withdrawl poop out or side affects ,look at every single aspect of your life ,things in our diet and toxins  can affect us now like they didn't before  ,I really do get the anger over doctors ,I now never go near them unless absolutely necessary .

as I said clean your diet massively for one ,I'm astonished by what ive learned about food but sticking to it is like a full time job .

Oops I have to apologise ,I have just noticed what this thread is about ,a bit  insensitive to claim what I said in relation  to the topic .

[Zeipii]

1 hour ago, powerback said:

Hi I agree wholeheartedly ,the amune system  and central nervous system  is thrown out of whack because of withdrawl poop out or side affects ,look at every single aspect of your life ,things in our diet and toxins  can affect us now like they didn't before  ,I really do get the anger over doctors ,I now never go near them unless absolutely necessary .

as I said clean your diet massively for one ,I'm astonished by what ive learned about food but sticking to it is like a full time job .

Oops I have to apologise ,I have just noticed what this thread is about ,a bit  insensitive to claim what I said in relation  to the topic .

my pssd already started abruptly on bupropion, had to ct, and a further deep anhedonia hell started. neither main damage has not much improved in 11 mths.