Are there recovery stories after several years?

General discussions. Feel free to use this like a support group also.
Sofa
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Re: Are there recovery stories after several years?

Unread post by Sofa »

ElaineBenes5 wrote: Mon Jul 18, 2022 5:29 pm Yea there are multiple recovery stories after years. I have been in touch with a few people directly who recovered markedly after number of years. I don’t put faith in Healy as his entire career depends on doomsday, which prevents him from being taken seriously even though this issue needs to be taken seriously. He’s right about a lot, but goes about it in such an unhealthy and histrionic way- I don’t listen to him anymore 🤷🏻‍♀️. I’d argue more people fell into depression and attempted unhealthy things as a result of things he’s said than he’s saved.
I have no emotions and no emotional response. It is getting worse.

Cant Feel any reaction in my brain or body. It is just empty.

It came on really quick over the last week. Before i had some numbness and anhedonia.

I have zero emotional response to the world now. I Feel nothing when listening to music, i Feel nothing when i talk to my loved ones, i Feel nothing watching my favourite show.
It is not just that it is less interesting and gives me less than before, it is actually no response, just dead on the inside. I keep looking for a response that is not there. My body feels lifeless like a corpse.

I dont even Feel anger or irritation. No love, no happy, no content, just empty.

Can emotions come back and anhedonia lift?

I dont just Feel no pleasure, i Feel nothing at all. It is not just numbness anymore, but full blown anesthesia.

I also have really bad cognitive function, and struggle to even generate thougts.

I dont know the reason. Have taken rescue doses of benzo once in april, also had a mild concussion, had covid in february and have taken B12 because i was deficient. Have bad sleep and lots of stress.

Are there other things that could cause this continous worsening? Like anything i ate or something? Or can pure stress make it worse?
6-Eggs!
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Re: Are there recovery stories after several years?

Unread post by 6-Eggs! »

I agree,

Lots of people eventually fully recover or make a significant recovery. Those that don't recover much after many years are a subset of even rarer PSSD sufferers.

I for one have made good progress in the last 8/9 months from one of the worst sufferers on here and I can finally see the light at the end of the tunnel.


Dr David compares it to TD and says it like there is no hope. In fact when I looked into TD since my cause of PSSD and FND like symptoms were from an AP which cause TD. I found that long term follow ups of TD sufferers made complete or near complete recovery by 5 years. It's not permanent like people claim to be, there just isn't decent long term follow up studies on it just like PSSD an other similar conditions.
Sofa
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Re: Are there recovery stories after several years?

Unread post by Sofa »

6-Eggs! wrote: Wed Jul 20, 2022 10:49 pm I agree,

Lots of people eventually fully recover or make a significant recovery. Those that don't recover much after many years are a subset of even rarer PSSD sufferers.

I for one have made good progress in the last 8/9 months from one of the worst sufferers on here and I can finally see the light at the end of the tunnel.


Dr David compares it to TD and says it like there is no hope. In fact when I looked into TD since my cause of PSSD and FND like symptoms were from an AP which cause TD. I found that long term follow ups of TD sufferers made complete or near complete recovery by 5 years. It's not permanent like people claim to be, there just isn't decent long term follow up studies on it just like PSSD an other similar conditions.
Is it possible to make a full recovery even if i only have gotten worse the past six months?

Probably worsening from different craches that i never managed to recover from in time for the next one, or just random worsening that attributed to what could be the closest trigger in my timeline.

I Feel like a zombie now and i struggle to think and make decisions really.
Numby
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Re: Are there recovery stories after several years?

Unread post by Numby »

What I am about to say may be discouraging, but I feel it's necessary to be honest about PSSD and the course of the disease.
6-Eggs! wrote: Wed Jul 20, 2022 10:49 pm Lots of people eventually fully recover or make a significant recovery. Those that don't recover much after many years are a subset of even rarer PSSD sufferers.
It appears to me that this is unfortunately not the case. From my 10+ years experience within the PSSD community there is a very limited number of full recoveries and also a rather limited number of people that had substantial improvements over time. There are two studies which provide evidence for this claim (see below). However, most people do recover from the shock they experience when learning that they suffer from PSSD.
  • Evidence from patient support groups:
    The German association runs a WhatsApp group with around 70 members and at least another 30 were members of the group. During the last 3,5 years there hasn't been a single case where someone left the group because they had fully recovered from PSSD. All people who recovered said that they found a cause other than PSSD (such as a neurological disease, a spinal injury etc.). During the same time, there were numerous reports of temporary remission (so called "windows") and crashes. In part, these reports came from people who a) were on (multiple) meds (not SSRI though), either for treatment of a mental illness or for experimentation concerning PSSD, b) reported atypical symptoms, c) whose symptoms showed an overlap with other diseases (mostly urological in nature) or d) who reported other factors that could at least have had an influence on these ups and downs. People who reported permanent improvement of their symptoms mostly said improvements were minor (~5-25% from the time before SSRI intake).
  • Evidence from Ben Sheetrit et al.'s study with 183 PSSD patients (https://pubmed.ncbi.nlm.nih.gov/25815755/):
    Time since quitting the medication did not correlate significantly with ASEX scores
    --> no significant improvement or worsening of symptoms over time, the study had rather strict inclusion criteria
  • Evidence from Pattachini & Cosci's study with 135 PSSD patients (https://pubmed.ncbi.nlm.nih.gov/33579876/):
    The longer the duration of symptoms, the higher the ASEX total score.
    --> worsening of symptoms over time, the study had rather loose inclusion criteria
In conclusion, I think that one cannot say that "lots" of people fully recover or make substantial recovery. However, if symptom severity varies a lot (i.e. there are many windows) and if there are atypical symptoms (no genital anesthesia, pain as the predominant symptom, no decrease in sex drive), a remission appears more likely than if these factors are absent.

To end with a hopeful note: Recovery is definitely possible, also if the above mentioned factors don't apply. I talked to one person who had PSSD for 8 years and naturally recovered. He could not say what it was, symptoms simply got less and less over time.
6-Eggs!
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Re: Are there recovery stories after several years?

Unread post by 6-Eggs! »

Well I think that is a classic case of observer or confirmation bias. I can put money that most people have no idea what they have or had when they had PSSD and it's very possible that they recovered before finding out or bothering to research retrospectively. It's impossible that there is a clear line between no issues withdrawing and permanent issues. There has to be a good amount of people in between that take a while to recover but do recover.

Even though I knew pretty in depth what PSSD is before I withdrew my med I had no clue it was related PSSD or even the med was involved until at least 3 months of 100s of tests, doctors, specialists and hospitals and google searching. I spent like 8-14 hours a day researching for like 3 months straight and never thought PSSD, this forum doesn't even come up in google with the usual search terms. I found it via a link somewhere else on reddit or somewhere. When one searches SD and numb genitals the overwhelming results I got was pudental neuralgia, STDs, diabetes, cauda equina syndrome and when other areas of the body are involved as happened latter for me, GBS and CIDP etc...

This community would be biased towards people like you and me that made that connection to their meds eventually at some point but most I feel would have not made the connection or even known what to search to find the term PSSD. And in my case and others on here, no medical professional came to PSSD as a conclusion even if they knew of it's existent.
Numby
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Re: Are there recovery stories after several years?

Unread post by Numby »

Well, things are different for Germany. If you google “SSRI sexuelle Nebenwirkung”, the second result is the German Wikipedia page on PSSD. Even 15 years ago I came up with a google result quickly. There also have been several publications on German media lately and the German association quite regularly receives requests from people who are still on meds and are experiencing side effects or who just quit their meds. So I don’t think there is any “huge” bias.

On the other hand, I am absolutely with you in that there is not just “no issues” and “permanent issues”. There are rebound phenomena, there are withdrawal syndromes etc. For PSSD, Healy et al. set the minimum duration of symptoms to three months. Personally I would have preferred to see six months because I believe that within the first six months there is a good chance of recovery. However, if it’s six months or more, I can’t help but I have not seen many recovery stories. Still, I hope that there are more recovery cases than I have seen because no one wants anybody to have PSSD.

However, what I also think is that doing “research” the whole day is one thing that usually makes the condition worse and leads to a state of hypervigilance that is usually accompanied by windows and crashes. If there is some sort of recovery later on, it’s usually because people stopped doing “research”. The best example is the recent post of a user who described how he recovered after 4 years.
Brain food
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Re: Are there recovery stories after several years?

Unread post by Brain food »

Numby wrote: Sat Jul 23, 2022 4:24 am Well, things are different for Germany. If you google “SSRI sexuelle Nebenwirkung”, the second result is the German Wikipedia page on PSSD. Even 15 years ago I came up with a google result quickly. There also have been several publications on German media lately and the German association quite regularly receives requests from people who are still on meds and are experiencing side effects or who just quit their meds. So I don’t think there is any “huge” bias.

On the other hand, I am absolutely with you in that there is not just “no issues” and “permanent issues”. There are rebound phenomena, there are withdrawal syndromes etc. For PSSD, Healy et al. set the minimum duration of symptoms to three months. Personally I would have preferred to see six months because I believe that within the first six months there is a good chance of recovery. However, if it’s six months or more, I can’t help but I have not seen many recovery stories. Still, I hope that there are more recovery cases than I have seen because no one wants anybody to have PSSD.

However, what I also think is that doing “research” the whole day is one thing that usually makes the condition worse and leads to a state of hypervigilance that is usually accompanied by windows and crashes. If there is some sort of recovery later on, it’s usually because people stopped doing “research”. The best example is the recent post of a user who described how he recovered after 4 years.
Hi Numby,

Could you please post links to some of the publications regarding PSSD in German media? Many of us are trying to get English language media outlets to write stories about PSSD and I think a potential problem is that they’re afraid the story is made up, since there are almost no previous media stories. They might be more willing to write stories about PSSD, if they see that respected German media outlets already have.
RainebowGirl
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Re: Are there recovery stories after several years?

Unread post by RainebowGirl »

It took me many years. 4 years after stopping ADs I still had bad symptoms, but in the last 3 years I have recovered quite a bit. So 7-8 years altogether, I guess? But it took me 4 years in before I started looking for resources and I started doing better things for my life.

I will say, I never really got worse after I stopped ADs. No deteriorating. So there is nowhere to go but up!

I have no idea who Healy is but I am wary to trust anyone who doesn't think recovery is possible.
:?
Used Effexor, Wellbutrin from 2012 - 2015. PSSD 4Y after.
Reinstated with Wellbutrin from March 2019 - May 2019. 65% improvement that leveled out closer to 40%.
Implemented yoga and pelvic floor therapy on and off.
Now at 85%! :mrgreen:
ElaineBenes5
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Re: Are there recovery stories after several years?

Unread post by ElaineBenes5 »

Agree!! The USA is the largest prescriber of antidepressants. It is also the country with perhaps the most dismissive attitude toward pssd. Imagine how many people return to their doctor with these symptoms, are consistently told it’s depression/anxiety and simply try other antidepressants. I imagine this is overwhelming responsible for how few cases of pssd there are in the USA. They exist, they just go back on antidepressants for better or for worse. Maybe a number of “treatment resistant depression” patients are simply having poor reactions to the meds. I was persistent told my multiple doctors to stop reading Internet forums, that they contained anecdotal and untrue information, and to try another ssri, as anxiery can indeed cause complete absence of sexual/romantic thoughts, creativity, sense of self, personality, and ability to feel sexual pleasure….. yeah right. People my parents ages or older would absolutely be likely to listen to their doctors instead of feverishly researching online. Kids on meds won’t realize until they are older and taper off.

At this stage I’m also not sure simply getting on a different antidepressant wouldn’t have been helpful- as to me it seems that the receptors are stuck in an altered state- perhaps rejolting and adapting brain chemistry over time would actually be helpful. I’m not going to try it anytime soon, but in many recovery stories, this is indeed a component.

Pssd is entirely policed and censored by the medical industry in the USA. Unless some major political figure or celebrity gets it and makes behind the scenes changes or discusses it publicly, it’s going to be a while before people who have pssd in the states even know it’s a thing. I never knew about it. None of my many friends on meds knew about it. None of the therapists in my community knew about it. None of the psychiatrists i consulted knew about it or saw it in their practice. My doctor dismissed it as anecdotal histrionics. The only person who upfront said yea it’s a thing duh, was a physiologist/physical therapist.

The new generation of doctors will likely be more familiar. But for some reason, the doctors who graduated when ssri antidepressants first came out are extremely comfortable with prescient them and praise their safety and benefits. Two have recently stated verbatim “it would be great if they were in the water supply!” I imagine they were heavily influenced by pro-pharma influences during their med school career or early practice. They know what they were told to know. They know what they studied for the tests. They know that when they prescribe the meds people feel less anxious or depressed. They don’t see this effect often ir at all becaue they aren’t really taking people off of the meds. Who would know they have pssd if they never come off the meds?? I wouldn’t have.




6-Eggs! wrote: Sat Jul 23, 2022 1:18 am Well I think that is a classic case of observer or confirmation bias. I can put money that most people have no idea what they have or had when they had PSSD and it's very possible that they recovered before finding out or bothering to research retrospectively. It's impossible that there is a clear line between no issues withdrawing and permanent issues. There has to be a good amount of people in between that take a while to recover but do recover.

Even though I knew pretty in depth what PSSD is before I withdrew my med I had no clue it was related PSSD or even the med was involved until at least 3 months of 100s of tests, doctors, specialists and hospitals and google searching. I spent like 8-14 hours a day researching for like 3 months straight and never thought PSSD, this forum doesn't even come up in google with the usual search terms. I found it via a link somewhere else on reddit or somewhere. When one searches SD and numb genitals the overwhelming results I got was pudental neuralgia, STDs, diabetes, cauda equina syndrome and when other areas of the body are involved as happened latter for me, GBS and CIDP etc...

This community would be biased towards people like you and me that made that connection to their meds eventually at some point but most I feel would have not made the connection or even known what to search to find the term PSSD. And in my case and others on here, no medical professional came to PSSD as a conclusion even if they knew of it's existent.
sylv
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Re: Are there recovery stories after several years?

Unread post by sylv »

Dr Shipko told the story how he was flooded with patients complaints when he setup a website about SSRI. There were all possible side effects from withdrawal to panic attacks and emotional blunting. These patients made hundreds of miles just to be LISTENED without immediate dismissimg from doctor. That was in 90s...

Not much has changed. The mainstream psychiatry will never inform about SSRI serious side effects. I think in future it will be worse with these drugs being dispensed by an algorithm with hardly any involment from doctor or nurse ( they are useless anyway) . Only small niche like Healy ( who likes ECT), some psychologists or psychedelic sympathetic doctors will inform about some risks

This is sad as the countries with the highest SSRI prescriptions has very high number social security benefits due psychiatric disability. Suicide is actually higher than in some countries almost without psychiatry ( like Egypt where people self medicate with Marijuana and natural stimulants )
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