PSSD Post-SSRI sexual dysfunction

[potions]

Also Spruce, I heard that there were loads of long term sufferers on the SSRIsex yahoo group and almost no recovery stories. Somebody just messaged me and told me he thinks most sufferers from PSSD do not recover. Many others have told me that we are too small of a market for a "cure" to be developed for us, and even if that happens it would take loads of years and millions of dollars. I am hopeless again

[Spruce30]

That's depressing. I have been talking to quite a few people on the facebook group. One woman is 6 years out, and she says she has recovered 50_60% and feels she is continuing to recover

 

[potions]

That's really good to hear, Spruce. I really really hope that most people improve/recover over time. I can't bear the thought of this being permanent. Thanks for your digging

[Spruce30]

I have messaged a lot of them to see how long they have had PSSD, and how much they have recovered etc. I am waiting for their replies

[potions]

Nice.

[potions]

I just talked to an 8 year sufferer who has seen no improvements and has not been on any drugs since pssd except for mirtazapine 

[Spruce30]

Lol. Mirtazepine can cause sexual problems. I just talked to someone from the PSSD facebook group today who says he has heard of over 30 people who have recovered from PSSD. He got his information from different places such as  paxil progress, pssd forum, and a number of other places. Most of the people he talked to who had recovered, hadn't bothered to write a success story, and had moved on with their life once they had recovered.

 

I think you really need to try and consider that there is a good chance you might recover potions, rather than always looking at the worst case scenario.

[potions]

That is thrilling Spruce. Thank you. Does he know if those people had genital numbness and if they 100% recovered? And I know I’m being ultra negative but I don’t want to fool myself. If there’s a better chance than not that I’ll end up permanently sexually and emotionally dead I think it’s better I know that and decide what to do from there than wait years and years with numb genitals and blunted emotions only to recover like 20% of what I once had. You probably get that.

[Zeipii]

2 hours ago, Spruce30 said:

Lol. Mirtazepine can cause sexual problems. I just talked to someone from the PSSD facebook group today who says he has heard of over 30 people who have recovered from PSSD. He got his information from different places such as  paxil progress, pssd forum, and a number of other places. Most of the people he talked to who had recovered, hadn't bothered to write a success story, and had moved on with their life once they had recovered.

 

I think you really need to try and consider that there is a good chance you might recover potions, rather than always looking at the worst case scenario.

great thing you are screening this, many thanks. please try to ask about symptoms they had in detail as potions said. For me the genital numbness is maybe the biggest problem in addition to deep anhedonia and loss of libido. I think it is also really important to know if they also had anhedonia /emotional numbness and if that recovered at same pace with pssd. 

[Zant808]

On 3/17/2018 at 6:17 AM, Spruce30 said:

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.

 

Yeah, the three medications I'm on are definitely causing sexual problems, especially the Anafranil.  But I cannot sleep without taking them.  The Anafranil was supposed to knock me out completely while I withdrew from the Klonopin and Depakote but I can see that it's not working like it used to.  If I double the dose of Anafranil to 50 mg, then that means it will be a 50 month taper just for that drug.  Sometimes I think I should just give up on the tapering because there seems to be no real solution for sleep and people are saying they stayed awake for years until they finally recovered.  And even if I get off everything which I did about 10 years ago, I still have PSSD to deal with.

[Spruce30]

You need to get off each drug one by one zante. I managed to get off a number of prescription drugs one by one. It took me about 4 years to do it, but i feel so much healthier being off everything. You have to fight for the life you want, and you have to fight hard

[potions]

I’m pretty sure PSSD is almost always permanent, just from what I’ve been told and what I’ve seen so far on various forums. Maybe some people get some function back but I don’t think anyone ever goes back to the way they were pre-SSRI. I think we are all doomed. I don’t see how this condition could be recovered 100% from, when people haven’t recovered even 1% 16 years out. That’s all

[Zeipii]

I am afraid a severe pssd involves possibly brain alterations but also autonomic nervous system damage. One way this could happen is glutamate excitotoxicity, which destroyes neurons. I am saying this much from the viewpoint of physical genital numbness. It is not a result of loss of libido, which is another damage that may be resulting from damage in the brain. The question is, can such damage really be healed by the body? 

 

I would be really happy to hear from cases where genital numbness has been severe, and it has disappeared as a result of healing. Any such cases known? 

[Zeipii]

Just now, Zeipii said:

I am afraid a severe pssd involves possibly brain alterations but also autonomic nervous system damage. One way this could happen is glutamate excitotoxicity, which destroyes neurons. I am saying this much from the viewpoint of physical genital numbness. It is not a result of loss of libido, which is another damage that may be resulting from damage in the brain. The question is, can such damage really be healed by the body? 

 

I would be really happy to hear from cases where genital numbness has been severe, and it has disappeared as a result of healing. Any such cases known? 

Excitotoxicity can also explain anhedonia, because glutamate is said to be the emotional transmitter together with dopamine. Neuronal damage in the reward system of the brain can be the reason behind this, and also loss of libido. 

[potions]

Zeipii, some people have apparently healed from genital numbness. Louissyfer apparently did with the help of mianserin but I and loads of others tried that to no avail. My friend recovers his genital numbness in waves and windows but is never pre-SSRI. Don’t spew scientific stuff like that out there when literally nobody knows what causes PSSD and people (including me) have seen windows of numbness improving and certain supplements seem to help the problem. Apparently histidine and inositol can help genital anesthesia. So it’s likely not “the destruction of neurons”. I’m saying that PSSD seems sort of hopeless because *most* people seem to not recover, or not recover 100% from PSSD. But I think with the right technology or treatment in 10-400 years, people will know what causes PSSD and how to treat the genital numbness. Don’t scare people with that scientific stuff when 1) nobody knows what causes PSSD 2) some people (albeit very few that I’ve seen) have recovered from genital numbness

[Zeipii]

yes, I agree nobody knows, but this is one potential explanation. And there is also school of thought saying neurons do regenerate, so even if this is the case, it may heal for some. The big question is: why only for some and why taking so variable times to heal? One might think that for similar recovery (physical) the recovery would be similar for all and last similar time. Just like a, wound on skin (or any physical condition) does not take terribly different times to heal for different people. 

[Zeipii]

2 minutes ago, Zeipii said:

yes, I agree nobody knows, but this is one potential explanation. And there is also school of thought saying neurons do regenerate, so even if this is the case, it may heal for some. The big question is: why only for some and why taking so variable times to heal? One might think that for similar recovery (physical) the recovery would be similar for all and last similar time. Just like a, wound on skin (or any physical condition) does not take terribly different times to heal for different people. 

the symptoms of pssd are impossible to measure between people, but there are very similar instances. That would lead one to think that if some heal, then all would recover through some process if not using psychoactive drugs any more. Brain and nerves are complex, but they are biological organs just as any other. 

[1Day]

Potions I have a question for you:  if hardly anybody recovers, where are the hundreds/thousands of people still with PSSD from the late nineties/early 2000's?  It seems that no matter what people tell you, you refuse to look at anything other than the worst-case scenarios.  The other day when you said you knew loads of people who were 8 years or more off the drugs and still suffering; I was expecting 'loads' to equal 200 or 300 people.  But it was a handful or so.  Spruce told you that one person who he has had contact with alone knows more than 30 people that have recovered and that the majority of them never bothered to come back and write a success story online. I think you need to consider the fact that this forum is for supporting people to try and recover.  Constantly writing posts saying that we are doomed when their is much evidence to the contray, is not helping anybody including yourself.  If you don't want to listen to the moderators and other people on this forum that is fine.  But please, for everybody's sake, stop writing things that are only based on a very small number of current worst case scenarios. 

[Zeipii]

Tell me 1day why would people not make a success posting if they have been members or lurkers of forums. There are thousands of (yes seekung for help and support) people reading and commenting for years.  If people recover in let's say a few years, out of this mass there would be a nice constant inflow of people recovering clearly or fully. I am sure many of them would post a success story (I would, you would...) If having suffered and followed up suffering for long one would not take a few minutes to make an encouraging post I would wonder. Where are all these people?  I hope everyone stays hopeful and heals, but this is just some realistic analysis. Or is it so that we members of these forums are the worst case 1 in 1000 or 10000 that just do not seem to heal... out if millions and millions even that subgroup would add to thousands... 

[potions]

1Day, I’ve been told by numerous people on various sites that most people do not recover from PSSD, that they have seen extremely limited recovery stories and numerous stories of long term sufferers. Apologies. I am suffering and pretty hopeless and surrounded by negativity myself. Sorry if I brought anyone else down. It seems to be a widely accepted belief almost everywhere else that PSSD is usually permanent. And I doubt anyone knows 30 people who recovered and didn’t post a success story, that seems sort of ridiculous. Why would those people still be on the forums... ?  And I assume those with PSSD from the late nineties/early 2000s are attributing their sexual dysfunction to age at this point. There wasn’t a name for PSSD until (2005?). I don’t think what I’m saying is only based on worst case scenarios. Go on any pssd site and you’ll find loads of long term sufferers who have seen no improvements, a ton of negativity, and almost no success stories. This site seems to be the only positive one about PSSD but even here people are hopeless. I’m sorry for making things more negative

[Zeipii]

I have discussed with Potions, and it seems we are both just analytical. I think that should be allowed, even if we all hope and pray everyday. I am for instance getting very hopeless even if I try not to. A year without any change. I am really happy if there would be more info about these 30 success stories. Symptoms, duration, how well healed. That is what we all would need most. Any chance to get that type of information? 

[Zeipii]

1 minute ago, Zeipii said:

I have discussed with Potions, and it seems we are both just analytical. I think that should be allowed, even if we all hope and pray everyday. I am for instance getting very hopeless even if I try not to. A year without any change. I am really happy if there would be more info about these 30 success stories. Symptoms, duration, how well healed. That is what we all would need most. Any chance to get that type of information? 

Spruce, is there any chance you could get this kind if info from the person that said knows those 30? Or is it the collection of the widely known cases that pop up on basicly all forums re pssd? 

[Zeipii]

And anyone, please put down in most detail all success stories you may have in most detail. We all need that! 

[1Day]

I would just advise you not to believe everything that people tell you. There was a time when people said you could catch Aids from drinking from the same cup. 

 

I dont pay too much attention to what current sufferers say on forums. Because I can see how it is so easy to fall into the negative trap. 

 

I try to take a step back and look at the bigger picture. People who have come across PSSD but are removed from the situation (i.e. not sufferers) generally seem to say that PSSD eventually resolves. I think I have probably read more recovery stories than very long term cases. And finally there is another condition that PSSD is often compared to called /tardive-dyskinesia. Many many places online say this condition is permanent. But the one academic study that followed people beyond 2 years, showed that they all recovered. Spruce posted a link to this study sometime back. Sure it was a small sample. But I think it proves that it really is best not to always believe what a small number of people say online. 

 

Also so I get the impression that many people on these forums are chucking everything but the kitchen sink into their body. As Altostrata said on here, many of these things are highly likely to further cause issues to an already disregulated system. 

 

 

[1Day]

I can fully believe that people leave forums as they get better. As somebody said the other day, you don't stay in hospital any longer than you need to. I think once people start to see light at the end of the tunnel, they 'floor the accelerator' and never want to look back.

[1Day]

You don't need to say sorry Potions. I just encourage you not to focus so much on what current cases say.  If I was you, I would stop reading the forums. 

[potions]

1Day, I hope I can one day laugh at all of this and cry and say “you were right!” But I just don’t know how likely that is. And either way, I’m losing years of my youth that I will never get back.

[potions]

I do appreciate you and Spruce trying to shed light on this condition. Let’s hope we all recover from this terrible affliction eventually

[Zeipii]

10 minutes ago, 1Day said:

I can fully believe that people leave forums as they get better. As somebody said the other day, you don't stay in hospital any longer than you need to. I think once people start to see light at the end of the tunnel, they 'floor the accelerator' and never want to look back.

This is where I have to disagree, and no offense. Anyway, the cure probably does not come overnight and people just disappear. There are hundreds or thousands of members and lurkers on pssd forums typically for a long time. If there was clear progress for even a part of those, you would have an steady inflow of current recovery news as well as these current sufferers. I for instance went through the whole pssd forum posting history for years of all threads the other day. It is a lot of people and a lot of info, but not really even a small proportion with positive news. 

[ChessieCat]

10 minutes ago, 1Day said:

I can fully believe that people leave forums as they get better.

 

They may leave the forums before they get better (possibly because they have got information and/or the negativity).  They may then go on to improve and it may not even enter their mind to return to post about it.  I think this is what happens with a lot of the non-PSSD withdrawal members.

[Zeipii]

1 minute ago, ChessieCat said:

 

They may leave the forums before they get better (possibly because they have got information and/or the negativity).  They may then go on to improve and it may not even enter their mind to return to post about it.  I think this is what happens with a lot of the non-PSSD withdrawal members.

Also here I have to disagree, no offense. You make it sound like boom all of a sudden these long term sufferers do heal, and that moment they do get out and dont even post a success news. Even in the best case I assume the healing is gradual, and when starting to see it you would have much time to give people some good news. 

[potions]

I know for one that if I recovered from PSSD I would write a long, detailed, and hopefully inspiring success story. And this is what I will do if I recover, I can almost guarantee it. This condition has consumed so much of my life and thoughts. I would be elated if I recover and would want to celebrate with people while spreading hope.

[Zeipii]

I really wish that positive attitude could result in healing... 

[Zeipii]

Just now, potions said:

I know for one that if I recovered from PSSD I would write a long, detailed, and hopefully inspiring success story. And this is what I will do if I recover, I can almost guarantee it. This condition has consumed so much of my life and thoughts. I would be elated if I recover and would want to celebrate with people while spreading hope.

Same for me, and I am really surprised if majority of us would not do it. Even from an event that would bring some clear step of partial recovery. And still... you do not see these even if you hope people could bring such news from their own cases or people they may know of. 

[potions]

If I’m being absolutely honest just from my own personal experiences, excluding all of the forums and success stories or lack thereof, I would think there was a 50% chance that I would eventually recover. I talked to two people with PSSD in person accidentally. One recovered after a year (or partially recovered.) The other hasn’t improved at all in 8 years. I didn’t plan to meet these people, I accidentally met them and didn’t know they had PSSD (nor did they even know the term). 8 years is not indefinitely. But it’s alarming to have not had any improvement in that long. So if I didn’t know about the internet, I’d assume there was a 50% chance I’ll recover.

[potions]

Also, the girl who recovered after a year says she still gets genital numbness “from time to time” but the fact that she’s better now makes it hopeful that she’ll recover further and maybe even completely eventually