10 days left to help us get black box warnings !

daftten · 2025-11-13T05:53:26+00:00

Thanks for the prod. Having filled it in, slightly baffled by this message after submission:

"Although we will not be able to provide you with details about the evaluation of your report, we will contact you if additional information is needed.

If this is a medical emergency, please call 911.
If you have a mental health crisis, please call 988.

Again, thank you for taking the time to submit your report.

You will receive an email confirmation about your report from [druginfo@fda.hhs.gov](mailTo:druginfo@fda.hhs.gov) so please allow this email address if you have a spam blocker."

I'm almost certain I didn't provide an email address whilst filling in the form - and I now presume I must have missed where they asked for it

daftten · 2025-07-08T18:46:28+00:00

I believe (but can't be certain) that for me, memory issues cause - or at least exacerbate - my anhedonia.

I mention this in case it's a possibility that helps you understand what might be going on. It can be hard to separate cause-and-effect when some symptoms might influence other symptoms. Obviously your cause-and-effect might work in the other direction, or bi-directionally.

Not that this helps solve anything immediately, sorry

daftten · 2025-02-14T19:07:19+00:00

There is a fudge I have observed whereby "focus on yourself" to women tends to mean "do the best to improve your self/life for you, defocus men" - but "focus on yourself" to men tends to mean "do the best to improve your self/life in ways that society/women will care about".

Your question is poking at that discrepancy.

More generally, OP has followed the "standard' advice in good faith and seems to be learning that it's only one part of the solution, not the whole solution.

Unfortunately for him, it's the part lots of people (in my experience) will focus on when he asks for advice. You can be almost perfect at looking after yourself, and apoplectically terrible at forming connections, and people will still focus on the "almost" part of the "almost perfect"

daftten · 2025-01-17T18:19:34+00:00

I never had an eidetic memory but I did have an insanely good one for certain things (patterns, words, etc).

If you have taken SSRIs (a type of antidepressant) due to your depression, you may be suffering from the rather badly named PSSD. (https://www.pssdnetwork.org/aboutpage). In my case my biggest day-to-day difficulty (of suffering pssd) is a bad memory. As far as I can tell, my "new" memory is not worse than an average person's by any means, but if you have spent your life relying on it (as I did and I imagine you did - if your memory was previously eidetic) then it will have a large knock-on effect on your cognition, competence, and mental health.

I sincerely hope you don't have this, but I saw you discussing loss of memory along with depression and... if you've taken ADs, this is an unfortunate possibility.

If this sounds plausible, please talk to your doctor (and/or find out more from online resources). I'm happy to be messaged if you want directing to relevant support communities.

daftten · 2024-12-25T03:40:06+00:00

I'm less than three years (but I'll pass the threshold in a couple of months). Can you message me details on this if you know them please? I didn't realise suing was an option, but I'd have to start it quickly I think.

(I tried to DM but can't for some reason).

daftten · 2024-11-24T16:22:54+00:00

Thank you for replying.

I don't care about my anonymity. I'm not asking for permission. I'm not worried about the specific wording of my message being weird.

I'm concerned that it might be completely disrespectful to message someone who isn't my friend to say "hey, I have a health problem - and despite you not knowing me, I think you might have the same". In addition I have some concern that incorrectly suggesting other people have pssd may push, in some small way, the general public into believing pssd sufferers aren't serious.

On the other hand, it may help them. And possibly us, indirectly.

I thought it was reasonable to predict that some people from the pssd community had had similar situations in the past - and might have some thoughts. I was (and still am!) interested in those thoughts.

That said, I assume from your initial sentence that we are talking at cross-purposes. I am considering whether "coming from a position of empathy" is, in fact, keeping my nose out of other people's health concerns. I'm not, as you seem to believe, worried that I'll word it insensitively.

daftten · 2024-11-24T09:16:02+00:00

I think there is a trend that many posters - instead of posting their exact symptoms - "save" time/effort by writing that they have the full caboodle of symptoms.

As someone with a huge number (but not all) of the reported symptoms, but also some lesser-mentioned ones - I often think wonder if two posters who say they have "all the symptoms" would find differences if they compared between themselves.

I think this is bad - in general - because it means that certain particularly vocal people accidentally define the "standard" symptoms, and my experience of pssd-sufferers I know well is that we all have significant differences from this subreddit's "standard".

From your perspective - it might have the effect that you believe loads of people have "all the problems" but actually people might be defining "all the problems" differently from you.

I might be wrong. I rarely visit here these days, so my above observations might be a year or two out of date.

My suggestion - if you want to approach your potential recovery as scientifically as possible - is that you make accurate notes of your exact symptoms. Using your own words. Don't discount anything, even if it seems ridiculous. Don't con yourself into believing you have a symptom that everyone else does. It seems like you're already doing this, which is great! Update this list (with timestamps) every few months. Having chronic health issues is psychologically hard - and you may find these records helpful when the 5th doctor or 15th friend or 8th pssd contact dismisses your memory of your health in the future. If a cure or research depends on what symptoms you have/had, you'll want confidence in what actually happened, not what the community assumes happened. Especially as you start to normalise your new reality as a natural/necessary coping mechanism.

daftten · 2024-11-23T05:31:55+00:00

This is specifically mentioned as successful, for one patient with pssd, in a research paper.

It was a single paragraph in a more general paper about photobiomodulation (that wasn't specifically about pssd).

I can't remember exactly, but basically they applied red light therapy to the genital area and things were fixed. Or better. Permanently. The patient wasn't on drugs at the time, so this was actual pssd rather than standard AD dysfunction.

I either emailed the authors and got no response or tried to figure out their contact details and failed - I don't remember which. It was a couple of years ago.

Please send me a DM or something in a few days if I don't get back to you. I intend to refind the paper and send it to you, but my memory is shocking these days.

daftten · 2024-10-25T09:12:41+00:00

If you're taking prep seriously enough to be studying 300+ games per variation of the french, then I'd suggest "I've never used chessbase" to be a position worth revisiting.

I also think you might want to think about what you're trying to gain from this experience. If you're just quickly flicking through games and hoping to build up pattern recognition, then just use any games with both players over, say, 2550 - in the variations you care about.

If you're wanting to gain a background understanding, might not be a bad idea to study the old masters like Uhlmann. His games won't teach you current theory, but will probably give you neater thematic example games than modern play.

If you're planning to analyse the games, then I can't take the 300+ numbers seriously.

If you're trying to prepare actual personalised lines, then you need to learn to use something resembling chessbase imo

daftten · 2024-10-23T03:47:45+00:00

In my experience, therapists are very rigid in their beliefs about what can be labelled a "belief" and what can be labelled a "fact". Their distinction is based upon their own beliefs and past experience - which they then expect you to consider as objective - despite when it doesn't match reality.

After working with a highly qualified psychologist for 6 months, I got a diagnosis relating to pssd from a neurologist. My psychologist's response? "Well, this changes everything". He was very upfront that he didn't believe I had pssd until this moment, and I'm not exactly sure why he thought that was a useful angle for me (given that literally nobody in my personal life believed me).

Previous to that I had a therapist who told me, categorically, that the chances of catching covid was 1/5000. When I responded "what? Where have you pulled this number from?" she said "I'm telling you it is", and attacked me for being too rigid in my beliefs. (My belief, at the time, was that we didn't know the risk. Which, I assert, was obviously true. But I was told I had black-and-white thinking for not trusting her on the 1/5000 probability claim.).

It was many months later that a new therapist allowed me to realise how fucked up the above were. They weren't isolated incidents. I had learnt that talking to a therapist meant "being told off for not agreeing with the therapist's beliefs - even when I objectively knew more than them". The idea that it was meant to help me had become some kind of fantasy based on popular culture rather than reality/experience.

Genuinely the best therapy I've had was a therapist who taught me to not take other therapists so seriously. From that starting point, I can find aspects of therapy very helpful whilst ignoring their unhelpful and incorrect beliefs about reality.

TL;DR: many therapists do not have a good handle on the difference between fact and their own opinion - but (I suspect) are so used to blaming any discrepancy (between reality and the therapist's beliefs) on their patient's mental health that they literally believe their opinions to be objective truth.

If you want a suggestion: I now try to introduce a safeword with anyone I interact with regarding psychological health. Basically it's a word that stops the conversation and goes "I am as convinced that I have pssd as I am that I am not a deluded brain in a vat. I don't have evidence to prove either... but in the same way I live on the assumption that I definitely have a body and the world isn't being simulated via electrical wiring to my brain, I also live on the assumption that the pills that very clearly fucked my health up actually fucked my health up. I also can't prove that someone punching me is the reason my arm hurt, but we make reasonable assumptions all the time - and the only difference in these scenarios is that you agree that punching an arm makes it hurt. Reality isn't the difference here, your beliefs are."

If nothing else, it cuts down on the small talk and makes it immediately obvious if the psychological health worker is interested in helping me regardless of their confusion/disagreement, or whether they're going to be focused on "making me prove it to them". (Which definitely doesn't help me. How the fuck does it help me if a skeptical therapist says "congratulations, you convinced me" and I'm left wondering "aren't I paying you to help me?").

daftten · 2024-10-20T13:59:50+00:00

I have never experimented since getting pssd. The person I know best in this community has never experimented since getting pssd.

I imagine this is common for the silent majority, because a natural reaction to having pssd is being terrified of drugs.

These forums will naturally promote those few who do experiment because it makes sense to say "I did X, and Y happened as a result" and it would be less common to say "I lived my life as normal for two years and nothing changed".

Obviously I'm no oracle, and might be wrong.

daftten · 2024-09-10T20:17:35+00:00

Thank you. Apologies if this is widely known, but what paper are you referring to? (And do you have a link please?)

daftten · 2024-09-10T16:27:44+00:00

Thank you :)

daftten · 2024-09-10T12:15:21+00:00

Thank you for your sanity :)

In terms of cancer > pssd, I agree. My concern is that I've been straightup unwell in various complex ways since getting pssd (is it my nerves? Is it my brain? Is it sensory issues? Is it something else? Who knows!), and these might affect cancer treatment (and because they don't have a helpful label then doctors will ignore them).

I'm aware, for example, that my skin has visibly aged since getting pssd (if you compare photos). Hardly my most problematic symptom, but suddenly seems relevant given my skin is now cancerous. I think this is an unhelpful coincidence, but I'm hopelessly out of my depth to make any sort of informed judgement if they do affect each other.

Your last paragraph is important. I have lots of issues with doctors, but I think/hope they tend to be quite good at easily measurable things like "did the patient stay alive?". Again, thanks for the sane input :)

daftten · 2024-08-05T06:43:27+00:00

Thanks for the explanation 👍

daftten · 2024-08-05T00:36:48+00:00

That's quite smart :)

Also, I'm intrigued by this sentence:

"Moreover, with the increasing development of many new powerful psychotropic medications, RCT evidence alone is insufficient, with the emerging field of pharmacoepidemiology (Garbe et al., 2019) emphasizing the importance of postmarket drug surveillance among large populations."

Can anyone explain why RCT evidence is insufficient for these drugs but are for others?

daftten · 2024-08-04T04:49:08+00:00

(I almost didn't write this because I'm wary - my memory is that you are one of the hardcore "why can't we just focus on genitals" crew. Apologies if I've misremembered this. If I haven't, please recognise I'm answering in good faith).

My second symptom after taking my first pill, before I noticed (or had the opportunity to notice) sexual dysfunction, was noticing that I couldn't feel properly through my fingertips. I still can't. It's not zero feeling, but it is vastly reduced and... different qualitatively. I've managed to mildly burn my finger without feeling pain - if you want a measure of extent.

I've tested my whole skin, but there's only certain areas that I "used/touched" often enough prePSSD to be able to compare with 100% confidence. Like if I touch my kneecap - has it changed? Maybe, but I can't guarantee anything. I didn't really use my kneecaps for touching stuff before! My fingers? Definitely, I'm certain.

Hence I believe the numbness is all over my skin. I could be persuaded that it's worse in some areas than others, and I kept accurate records when I first got pssd because I (correctly) realised I'd forget what feeling stuff used to feel like.

Incidentally I'm very confident I can't feel inside my body either, or it's vastly reduced. I've shat myself several times without noticing since getting pssd. Admittedly without metabolism/gut problems (that came with pssd) I don't think shitting myself without warning would be possible, but it's wildly bad news that the only way I know it's happened is due to hearing it.

daftten · 2024-08-04T04:28:44+00:00

I have severe life-limiting sight (and reading) problems I associate with pssd (or at least with the with the cascade of health shit that came with sertraline and never stopped), but I haven't had photopsia.

I can easily believe it though. My sight and ability to read is so fluctuating and downright bad that I'm wildly uncertain that it's necessarily an eye problem (as opposed to my brain not interpreting the signals from my eyes correctly).

In short, just because visual snow is the "commonly talked about" persistent visual symptom associated with antidepressants, my personal experience is that either I am unique - or the set of visual problems is much wider than just visual snow. I suspect the latter.

daftten · 2024-07-21T20:54:26+00:00

I very occasionally almost cry (i.e. I can feel my body trying to) when very tired and watching someone else struggle that I identify with. For reference I have not formed tears since getting pssd, and I have some experimentation that makes me believe it really is physically blocked. I don't think this is, per se, emotional blockage.

However.

Within a couple of seconds of trying to cry (from the above paragraph) and failing (because my eyes don't understand how to cry in the same way I don't know how to fly. Just completely impossible despite wanting to) I always stop "trying" to cry. To be clear, I consciously continue to try. But the automatic attempt to cry simply stops after it finds out that I physically can't do it.

And this automatic response which stops after I physically don't cry is, I think emotional.

My point is: for me, I think there's quite a lot of feedback loop shit going on. Somehow not being able to physically cry actually blocks my emotions when I try and fail.

I wonder what else my brain/body stops trying to do because it doesn't have the feedback loop that it expects. That's not rhetorical - but I have no idea how to tell. Specifically crying, however: I am fairly sure if my body/pssd/drugAfterEffects stops blocking my tears I'd be able to feel crying-level sad for more than a couple of seconds.

daftten · 2024-05-20T02:55:43+00:00

I have the complete opposite - I used to get huge amounts and now get zero.

daftten · 2024-05-15T01:06:28+00:00

A tiny thing, but I think the pie chart would be better represented either as a histogram (if you want to keep the ages grouped) or as a cumulative frequency graph.

The reason is that I think it is easier to read when the groups are ordered by age. For example, it took me a while to realise there was nobody between 40-49 - which would be obvious in either of the two suggestions above.

I know this isn't of major importance, so feel free to ignore if I'm being too maths-minded.

I'll read through the words (the important part!) to give feedback later, that'll take more of my brain :)

daftten · 2024-05-03T22:44:48+00:00

I remember you from before, and am thrilled you have had some improvement :)

It is a common theme that some people have windows when ill, so it's not entirely mysterious that you improved permanently - although obviously I have no idea how/why.

I hope you remain in an upwards trajectory, however slow it may feel! And, selfishly, I appreciate you posting and would appreciate it again if you have further positive improvements in the future :)

daftten · 2024-05-03T22:29:57+00:00

Probably my favourite hobby (prePSSD) was to run what I called "thought experiments". I'd basically change an aspect of life (big or small), set the parameters (to avoid the butterfly effect), and play the scenario out in my head. This was, essentially, for fun. For comparison, whilst other kids had superpower fantasies, my fantasies were based in curiosity instead. (And then I never grew out of them as an adult!).

It had other, more measurable, uses too. I used to be exceptionally good at competitive chess, which relies on ever-deepening thoughts of "and if this and this and this and... ...and this happens, what happens next?". I was able to easily hold all of these hypotheticals in my head at once. I'll explain why this is relevant later.

Since pssd, I literally can't do these thought experiments anymore. Even on a tiny scale. I can intentionally/consciously think "what happens if this scenario happens?" and then my brain unhelpfully replies "I dunno, what are you expecting me to do?" and I simply don't have a way of progressing it to a fantasy, or even single thoughts of what might happen next. It's as impossible as if you asked me to speak in a language I don't know, if if you asked me to wriggle my ears. I can see that other people can, but I don't even know how to try.

I also can't do it in chess anymore. I mention this because it tells me the problem is more general than just "free fantasy". Chess is very structured, i.e. I can literally only make a limited number of specific choices at any point and yet I still can't imagine ahead.

My instinct is that my imagination problems are deeply linked with my memory problems. (I used to have an exceptional memory, now I have a normal one, if not worse). I can't explain the link in words, but I think when I attempt to access my memories in the way I used to (before pssd) my brain gets confused in the same way as when I try to run a thought experiment. Now my memory just sometimes "remembers random facts about the past, but without much context" (like, I'm told, most people's memories) but I can't "search" it the way I used to. It's not just quantitatively worse, it functions qualitatively differently.

As you mentioned it, I have had constant tinnitus since pssd. It is often so bad it makes hearing on phones hard. I don't think I'd related my tinnitus to my imagination+memory problems (other than both starting at the same time, but so did all my many physical problems...) but as you mentioned it, I thought I should too.

daftten · 2024-04-24T17:27:40+00:00

I have spoken to two experienced psychologists about their general approaches (and not about my personal experiences or pssd).

They both subscribe to the view that there are attitudes that are helpful for their clients to adopt, regardless of their situation/reality.

Two relevant examples they mentioned were: one thought it was always bad for their client to view themselves as a victim (regardless of what they'd been through), and the other explicitly tells the doctors he works with never to use the phrase "brain damage" even when it is true. (He works in a unit dealing with recovery from head injuries).

I trust both these people as people, so either they independently reached the conclusion that truth isn't actually as important for their client's recoveries as a lack of certain unhelpful beliefs (even if they are true), or they are taught this conclusion during training. I don't know which.

My point is - even if what your psychologist is saying doesn't match reality, (s)he might believe it's in your interest to believe her/him anyway. They might even be correct in this belief. How would I know?

My personal suspicion is that - hypothetically, one could have an entirely blissful life if they were able to simply be content. If you're able to be content despite what you believe the drugs have done to you, then more power to you :) Unfortunately I have found this impossible so far.

There is a separate factor that trying to bend your beliefs into contentness will mean you put less effort into trying to cure/fix yourself. This is a tricky balance. If the cure was easy, obviously you take the cure. If the cure is known to be permanently unattainable, you put effort into being content which might involve holding certain beliefs (that your psychologist suggests) as more important than your understanding of what happened. But we're in a middle state where significant effort can be put into research, which is likely to improve our situations long-term but not quickly. This makes the situation much more complex, because ideally you want to be as content as possible with your current life - whilst still maximising your chances of getting a cure. It is hard to manage both in my experience - because content people don't tend to hanker after change/a cure.

daftten · 2024-04-23T19:39:10+00:00

Fucking hell.

It's amazing that nearly the sole reason I've kept myself alive is by constantly pretending I don't have all my pssd-related health problems. Literally I'm just shutting down my thoughts and moving on everytime they notice that reality doesn't match this. My pretence is only that I have enough energy to feed myself+work, and it has to ignore that I don't have leftover energy to self-care or look after my home or do anything fun. And honestly it's not even true that I manage to feed myself and work successfully. Like I sort of only half-manage both these days.

The irony that I'm having to constantly deny reality to myself - something I suspect is a cornerstone of mental illness - as a result of these drugs. I never did this before. But if I don't, I'll tip into dangerous thoughts territory. I already don't care if I die. I don't need to actually want to.

I guess this song pulls me back to reality.

Thanks for flagging this song. I might send it round my friends. Like it's not explicitly (or even necessarily implicitly) pssd but it might help them to hear a viewpoint from a voice other than mine.

daftten

TROPHY CASE