I've made terrible mistakes. Desperately need support

General Discussion
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#1

Hello all. I’ve never posted frequently to the forum, but I’ve been around for awhile now, took a break, and I am now back. I’m in a really terrible spot (and have been for the past 2 years now), and I’m in desperate need of help/support from the community. I won’t be going into what brought me to this forum in the first place (can check out member story), but will briefly recap everything that has happened that has led me to be in a spot that is much worse than where I first started with PAS. I know it’s a bit of a write up, but I would really appreciate if you guys would read through it and offer any support possible.

So to jump right in, at the end of 2018, I was continuing my search for a treatment or cure for what I was suffering from due to PAS, and I had read about some people benefiting from rhodiola rosea. So without any hesitation, I decided to take it, and for the first time in several years, I had taken a supplement that backfired terribly: I developed severe insomnia. I went from having no sleep issues at all (consistent 8 hours of sleep a night while also being able to nap throughout the day if I’d like – never felt tired) to struggling to get a consistent 4 hours of sleep a night even without any naps (naps were no longer an option). I didn’t know it then, but this was the beginning of a downward spiral that would have me at the brink of suicide.

I continued like this for nearly 6 months (so at this point it’s June 2019), and I was terrified at the fact that nothing was improving. Needless to say, I was losing my mind, and began the downward spiral that I had mentioned. I truly believed at that time that SOMETHING had to give before my next semester of school or else I’d be doomed. At this time I began taking all of the extremely risky supplements that people have mentioned here: Mifepristone, research peptides (BPC-157, GHK-CU, etc.) and others. As you can probably guess, none of this worked, and at the time I finished trying all of this, it was August – nearly the end of summer break. I was more desperate than any other point in my life for something to give, and I thought that I was genuinely at the end of my rope. It’s important for me to emphasize this (I TRULY thought that I was going to be ending my life any day at that point), and so I made second biggest mistake of my life right next to taking Accutane. I’m having a hard time even typing this part because of how ashamed I am because I knew so, so, so much better, but due to reading about a few reports of PAS patients recovering from taking finasteride, I thought that I had nothing to lose and decided to take it.

As you can probably guess, it made me significantly worse. I went from having brain fog and sexual dysfunction from Accutane and insomnia from rhodiola to having all of the aforementioned and now the following: shrinkage, anhedonia, muscle weakness, severe cognitive decline (memory, verbal fluency), joint clicking, no appetite, and constantly clammy/sweat hands and feet. I was also more suicidal then ever, and to spare all the details, I discovered that I truly don’t want to die early 2020 when I attempted. I’m glad it didn’t succeed, but things haven’t gotten much better since that day, and I’m terrified that those thoughts are once again creeping up on me.

I’m not sure how else to ask, and I know no one really has the answer, but how am I supposed to do this? I’m currently seeing a therapist and currently trying to work with medical doctors, but as many of you already know, it isn’t being too helpful. I’ve also been sticking to a keto diet for the past 6 months, and it’s only helped slightly with the sleep issues. I don’t know what else to do.

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My Accutane (Absorbica) Story
#2

Don’t be ashamed. We are all here because we were promised that these medications were safe and they proved not to be. They told us the adverse effects were temporary but they are not. You are not alone in taking multiple of these ‘safe’ substances.

You were deceived, that is not something to be ashamed of.

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#3

I’m really sorry to hear that, Bear.

I remember talking to you in the past and thinking what a great guy you are and what a tough break you’d had.

You’ve absolutely done the right thing by reaching out. I remember when I was feeling really very bad, was also barely sleeping and feeling that suicide would be the end of me. I had felt depressed before, but it was nothing compared to the powerful feeling of wanting my life to be over that I experienced at that time.

A few people here really helped me out and for that I am truly grateful, because approaching 3 years later I feel that life, while still impaired is worth living and while recovery is incremental, inconsistent and plagued by setbacks, it is possible. I’m not there, but I’m getting there.

This will be a hard road, and you’re going to have to dig deep and hold on tight. Some times you will not feel like you want to. I honestly think there are few experiences that are worse than what this condition levels at some people, and I am sincere when I say I’m so sorry that you’re dealing with this.

Everyone here is on your side, willing you to hold on, wanting to hear from you.

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#4

Thanks for the replies. When I typed this out I was feeling very frightened and down, but I’m already starting to feel better.

I’m just trying to focus on what has improved since summer 2019 (my spiral), and realize that perhaps there still is more good to come.

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#5

you’re going to have to stop taking risks with the supplements man

the great news is you are young as hell and this is a great time to develop some toughness, and that we are making more progress with awareness and our research pipeline (recent news).

i think there are compounds existing that might be able to make us feel better but we need to get the research going morel, and we are doing more in the summer

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#6

Since you are very young, I think earnest research will have started soon enough for you to benefit from therapy following from a scientific understanding of what PFS/PAS is. I think the community may be getting to the point of making that happen. Therefore, for one thing, I think you can look forward to enjoy the second and third phases of life where one raises children and then becomes a grandparent and/or generally gets to enjoy a period of relaxation, leisure and reflection upon past success. In other words, even if your youth will have been hard, the majority of your life should be unaffected.

Regarding your non-sexual acute symptoms, in my own and many others’ experiences, those tend to recede much more quickly just with time than the sexual ones. So I think you will find that your ability to enjoy and perform well in all non-sexual aspects of life may recover soon. On the sexual symptoms, as I say, I think a therapy could arrive in time for you to still have kids, which, when you get older you might find is really the only important thing. In theory, not spending time on girls when young can be a major advantage to you in all the other aspects of life and getting ahead. Don’t know how helpful any of this is to you but it’s the perspective e of a much older long sufferer of this condition.

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#7

Hi Bear, we messaged a little bit a couple of years ago. I’m a fellow PAS sufferer. I’m so sorry to hear about all that’s happened since we spoke. You come across as such a smart and decent guy.

I fully understand the desperation to be healed. I think it’s probably fair to say most of us on here have tried things out of desperation that have ended up making us worse. I would almost say it’s an extension of our condition - on an emotional level - when something so unthinkable has happened it’s almost inevitable we are going to react by making desperate choices and more often than not they are going to be bad choices. I took a lot of recreational drugs because I thought it would somehow reprogram my brain and make me better… it wasn’t logical… I know I compounded a lot of my health issues with that. Maybe not to the extent you are talking about, but still, it comes from the same root. I hope you can forgive yourself.

I don’t know what else to say except I am thinking of you, I feel your pain and I admire your resolution to continue to live. Please feel free to message me anytime.

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#8

I would try to take phenibut every 4 days. It will at least help you get good sleep a few times a week.

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#9

Hi @BearOf17,

Firstly, I am so sorry to hear this has happened to you. It’s a repeating tragedy that is one of my greatest frustrations: That the desperation of patients for improvement, and the total lack of clinical understanding or support is leaving patients vulnerable to this ever-present risk of significant worsening with exposure to certain therapeutic attempts. I’ve written about this before. As others have said, this is a perfect storm of problems and not your fault. I’m glad you’ve reached out for support and that members have been supportive - I’m also so pleased to hear that you’ve at least had a slight positive trend, and deeply hope that’s going to continue. Please keep us updated and know we’re all supporting you.

Unfortunately, I could. In regards to what led you to do this, if I may ask a question:

You are probably aware that I and all the forum staff tell people very frequently to be very cautious regarding further antiandrogenic substances given the long history of self reports and the coinciding pharmacodynamic of causative substances. Is there anything more we could be doing to better warn that could have helped prevent this? One thing we trialled was attaching a note that would appear above posts reporting therapeutic efforts without caution, and inform the reader this was a risk based on past reports. Would applying this to more posts suggesting self-therapies have potentially made you think twice, or would this not have made much of a difference?

Thank you and please keep your chin up. As others have mentioned, you’re very young yet.

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#10

Hello, and thanks for your response (and all others too! Incase I didn’t specifically say thank you to anyone), it really does mean a lot and helps.

Yes, I was EXTREMELY aware of the risk I was getting myself involved with, which is a big part of the regret I deal with now as you can probably imagine. To be quite honest though, I truly don’t believe that anything else could have been done on this site to have prevented me from doing what I did back then. The only thing that could’ve stopped me was to come to realization that I needed to give myself several months to calm down from the stress of my previous semester of school as well as to NOT put on any additional stress onto myself (i.e. I worked 2 jobs that summer and continued trying to live a life that was compatible with who I was when I could sleep well which made me stressed when I couldn’t meet my own expectations). Funnily enough though, I was slightly aware of this: It just seemed impossible to overcome how angry I was to have to deal with my original PAS symptoms on top of sleep issues (not bothering to consider how much worse it could still get). All in all, I was aware of the risks of taking any supplement, antiandrogenic or otherwise, in trying to improve symptoms, and I was especially aware of how dangerous finasteride is.

As I said in my original post, I truly believed at that time that if nothing worked before my next semester of school I would end my life, and I think it goes without saying that I was going through a very severe, prolonged panic. I think many people here can understand how hard it is to subdue the crazy things that seem all too rational (when they’re truly not) while going through such a panic, but unfortunately I was not strong enough.