PSSD is fundamentally the same as PFS

General Discussion
#1

Just wanted to remark that I am completely convinced my post-SSRI & post-anti-psychotic syndromes are the same as PFS, even though I have never taken finasteride.

99% of my symptoms are the same. The only significant differences in my own experience are obvious things like brain zaps (from the SSRI) and akathisia (from the anti-psychotic).

I tried lots of things, but not until 9 years in did I seriously consider herbs and supplements purported to affect sex hormones.

This is because the forums I most frequented were so focused on serotonin and dopamine. They also seem to be generally of lower quality than PFS communities, and I attribute that to their pre-existing mental issues, for which they took the drugs in the first place.

Anyhow I have never found such compelling (although brief) respite from something as simple as haphazardly dosing aphrodisiac and testosterone-promoting herbs.

I won’t go into detail, I just wanted to throw this out there, because if this is true (I personally know it is) it should matter to the other organizations working independently to cure their supposedly unique syndromes.

In summary:

PSSD, POIS, SSRI/SNRI/Anti-psychotic protracted withdrawal syndrome, Rogaine/Accutane long term issues, “hard flaccid”, are all fundamentally the same thing as PFS.

@JustQuitDut hypothesizes it’s neurosteroid imbalance, and personally I agree. It at least makes way more sense than a neurotransmitter imbalance.

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#2

I think both conditions are a form of brain damage.

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#3

I am completely convinced they aren’t.

For two years I thought I had Peyronie’s. Then one day the deformation recovered 100%, although it reverted back the next day.

I see no reason to think the other issues are any different.

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#4

For what it’s worth I had brain zaps when I quit finasteride

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#5

That is quite the revelation to me, I didn’t know Finasteride did that also.

#6

@anon80401129, while I personally couldn’t say if a neurosteroid imbalance is the problem, I think you’re likely to be correct that these conditions are one and the same.

If we had a way of testing for this condition, I would expect the trigger drug, whether it be an anti depressant, an acne treatment or a hairloss pill, to be irrelevant in defining the condition.

It’s a shame that we haven’t all managed to network more, to find common ground and to amplify our voices through cooperation with other groups.

We have some people in other groups who recognise the similarities between what I think could be called post drug patients and with some effort, I hope we can all push in the same direction to get out of this mess, rather than focus on the specifics of what brought us here.

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#7

I’ve just went back and reworded that statement more carefully. I’m excited that there are others who recognize the similarities, I wish this recognition was more widespread.

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#8

I hope that people find this forum a place to assemble and see the similarities, not look for differences.

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#9

It would be neat if this site could rank higher in Google search for those terms that aren’t popularly associated with PFS. Like “hard flaccid” or “protracted withdrawal syndrome”. There’s a subreddit with some sort of Kegel exercise craze they think will fix them.

I remember browsing here years ago seeking information regarding my Lexapro-induced syndrome. The graphic descriptions of stuff like Peyronie’s left me with the biggest impression that this was totally different from what I had. So that definitely pushed me away.

Until I got it from Invega … and even then I didn’t remember this website until 4 years later. When my fleeting successes with random aphrodisiac herbs reinforced the idea that all these conditions involve sex-hormones, even if the offending drugs themselves are not classified as such.

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#10

Fwiw @anon80401129, one of our moderators who has been extremely unwell for over a year after a subsequent crash has severe and constant brain zaps.

Have a read of this chapter of axolotl’s literature review if you haven’t already: https://www.propeciahelp.com/pfs-manifestation-of-a-post-androgen-deprivation-syndrome-following-exposure-to-substances-with-antiandrogenic-effects/

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#11

@anon80401129 I’m on other groups and see striking similarities across them all. a certain type of antibiotics also bring people to this state. In all groups there is the same pattern across user stories. medical denial, lack of support, loss of careers, loss of friends, destruction of family units etc, multiple shared physical and cognitive symptoms down to suicides. It’s a shame there isn’t a central cohort pushing forward as one strong unit with all donations, funds going into one pot.
It is very likely that one treatment when found will help all. We’d get there much quicker as one.

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#12

Amen brother. We all need to band together. As you know, I started with Tretinoin Cream. I realize it’s an Accutane derivative, but I’m sure there are others like me.

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#13

Yes mate, how many more are there out there that have not yet made the connection to these drugs, considering none of thse sides are included on the info leaflet. Its now reported that suicide is the 10th biggest killer in society. How much of is it because of these drugs that are prescribed to millions. Its a frightening thought.

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#14

The 3rd leading cause of death in the US is medical malpractice. Combine those figures and even more terrifying.

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#15

I took both Finasteride about 20 years ago with no apparent problems, but I don’t know if it caused me silent harm, and antidepressants, however I crashed in 2013 with only 7 drops of Citalopram (single dose). Also I believe given the similarity of the symptoms, and the fact that both drugs act on the hormonal profile as antiandrogens and seem to inhibit the production of neurosteroids, I believe that in fact the two syndromes are essentially the same thing.

Although SSRIs act as the main mechanism of action by inhibiting the reuptake of serotonin, and such a strong increase is very damaging for sexuality. I am in contact with a psychiatrist who studies PSSD, Dr David Healy, and he says that every person who takes an SSRI in about half an hour develops some form of genital anesthesia, 80% of people who take an SSRI’s develop some form of sexual dysfunction during treatment. He also has other hypotheses about PSSD, such as damage to the spinal cord and blockage of ion channels. While others think of a desensitization of the 5HT1-A receptors of serotonin on an epigenetic basis. But as mentioned in the first comment I also believe that PFS and PSSD are basically some form of brain damage, hopefully reversible in some way. I have trust in the research, and I hope we can understand what happened.

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#16

The only reasons I disagree with it being brain damage is brain damage doesn’t cause wrinkly skin, gyno, loss of response to androgens, etc even in brain dead people

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#17

Also low ejaculate volume etc…brain damage can cause this through hypogonadism due to decreased hormones but not what we are xperiencing

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#18

Also, mods on here have stated from reputable members that they have experienced temporary recoveries or lessening of symptoms. I personally have not except from one time which was amazing. But if it was damage, there wouldn’t be this worsening and getting better of symptoms. I agree our condition mimics brain damage and our brains are obviously not working correctly but idk if brain damage is the Root. Especially the fact some people went back to normal for a week to a month and then crashed

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#19

I also agree it can’t be brain damage. I already explained the temporary dick recovery thing, which would require divine intervention to explain if it was physical damage. Recently I experienced such incredible recovery (for a few minutes) of multiple “unrelated” symptoms just by taking a random sample of aphrodisiac herbs, so there’s simply no way my brain has undergone structural changes.

And I may sound stupid when I talk, but I can still write coherently so it’s not like I’ve become stupider.

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#20

for me its the opposite

i sound normal when i talk and like a complete idiot when i type

i spend abnormal amount of time using grammar tools for work related emails and messages

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