Cognitive Behavioral Therapy really helped me–please spend some time looking into it and doing it or some other type of psychotherapy. We men in general feel so shamed to be seeking help that instead of learning to retrain our minds, we go out and do all sorts of things, spending money on junk and supplements and the latest idea. PFS is partly a mind thing, so a good therapist/psychologists who is understanding and supportive is the way to go, IMO, speaking from experience.
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I have lost my hard drive. I am trying to get the reports online. I ll update you as soon as I can.
It should definitely help, but I think after 5 years unless I treat the real thing somehow, all these bandaid measures will be just that, bandaid measures. Wont they? I have gone to a psychiatrist. He did acknowledge something is wrong with me. He prescribed bupoprion which I took for 8 weeks fruitlessly.
IMHO the only thing there is left for us to try is to do everything possible to get research on our condition performed. The easiest thing we can do for that right now is to recruit more survey participants.
We should all be doing everything possible to get as many people who suffer from persistent side effects from Accutane or SSRIs to take the survey.
I think a lot of people here like to take herbs, TRT, fasting, etc because it gives them a sense of being in control or that the are doing something. That can be useful in the short term for keeping hope alive. The problem is that it’s killing time living an illusion and life is finite. The community writ large has been doing this for 15 years. But now we’ve tried all the herbs and Testosterone and remain just as sick as we were 15 years ago. Instead of 30, now we’re 45 etc.
This community needs to put down the internet bro science and recruit as many participants for the survey as we can. THAT is the thing we have left to try — actually getting scientific research on our condition performed. We e tried everything else and none of it worked. Now it’s time for science. The way we get science is by filling out the survey.
Already filled it out yourself? Good, that’s a start. Now get 10 other people to fill it out, preferably of a large variety of ages, genders, and ethnicities.
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I would have already asked 10 people if I knew 10 people who were suffering from this. We’ve been waiting for research for so long. Lets try and get somebody on board who will start debugging this problem and these symptoms along with us. Otherwise, instead of 45, many will be 60 and many will be dead.
IDK this somebody who would be willing to sit with us, is there anybody you think we can contact and request for help. Or somebody you think who could know somebody who could help.
I know I’ve said this a thousand times so it has probably lost its impact but I can’t see myself living like this any longer. I can’t progress in my career, I can’t fall in love. I have already lost all my people in my life. My parents are growing older. My sister is sick too. I can’t fulfill a single dream. Hell, I can’t sleep. I can’t feel the good feeling you get when you wake up in the morning and realize its a holiday.
Lets take action now. If it doesn’t work out, itll be easier for me to die.
Edit: I saw a person on reddit in the morning claiming to have iso side effects. I plan on getting in touch with and try to get them to come here and fill the survey. Some other poster said their friend took NSI 189 and it helped. No idea what that is.
This is the post, so everybody can try and contact them.
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These are most of the tests I have gotten done. My test in 2016 was 380. If I were to get new tests done, should I get the list that you put up before done or is there more?
Also, what would be the plan of action because I was under the impression that it doens’t matter.
This X1000. We have to act and we have to be a collective. Herbs and vitamins aren’t the cure to this condition. People hate the fact that research takes time but the stark reality is that there is simply no quick fix. We have a long road ahead of us but it’ll be a lot shorter if we all act together and act now.
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Yes. People have been saying since decades we need a good research stack but it hasn’t ever happened. Lets start with what we have on hand. Any idea that we can execute now. Any possibility that we can discard for good and any possibility we can pursue now. Lets start now.
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Labs are like storytelling. I see several abnormalities in your tests. First of all, your morning Cortisol (12.5) is mid range but I’d say a high normal level is optimal (>15). Do you wake up energetic in the morning? We need to see DHEA-s level. Testosterone (452/April '18) is okish but I’d aim for >600 if you can. I can’t find anything for thyroid (TSH, FT4, FT3); Free T; E2; DHT; SHBG; Ferritin; Liver profile; CBC. HGH testing isn’t reliable. LH is ok but FSH (1.38) is below reference range and that merits further investigation. Calcium is also low and it’s important for Dopamine transmission and Vitamin D metabolism. You need more Calcium.
I know getting more tests can be tedious but you can’t draw conclusions unless you get the big picture first. Godspeed!
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Pretty much all your tests are in normal range, a few are below range but not that much/not clinically significant as doctors might say.
And your results are similar over time.
So I think my advice would be to stop getting tests for a while, realize that you are normal, and do good and healthy things for your mind and body.
I say this especially because you are voicing negative thoughts, thought of despair, thoughts of death.
It is true that testosterone can help improve mood and libido. But if your main thing holding you back is your belief that you are being held back, try a therapist (who does not prescribe more drugs that can hurt you more).
I did that for years and it helped me turn the corner and now I am living life. Not a perfect life, just a good one.
AND all the things you mentioned here I have dealt with or still dealing with, and I am alive and fine.
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Everything you say is so similar to me… i feel the same way, somedays i remind myself i have PAS and every hope and my career plans seems so dark and lifeless. I don’t know what to do. Do you have any ideals for your future? If you don’t have fatigue, the best plan is to strive for your dream almost every hour of the day. Make big decisions, i was the number 1 student in my Literature class in Uni, and i left the school this year, because i wanted to become a painter. Thats the only thing that keeping me alive, i want to become a filmmaker and painter. Sometimes i practice and draw 12 hours a day, thats the only thing left in my life. Everything else is dark, when i masturbate i get depressed because each day i realize im losing the sensations down there, orgasms feels almost painful now. This pain on one’s shoulders is unbearable, i romantically want to think this condition is somehow meant to be experienced in our fate and one day everything will be over… years are passing by and i lost my many years because of this condition, i was just 16 and it traumatized me, made me a pessimistic person, i just realize the person i become is molded by this disease, it is the hardest things to swallow for me. That the 4 pills i took affected my whole personality and life. But i am now start to hold the strings for myself now and i suggest you to act out in that way, if its possible of course.
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@Cooper Pretty much all of what you just wrote I have been through, I have experienced, I have felt. I first had symptoms in 1996 from a prescription drug for malaria. Then I took Accutane in 1997-98 and again in 2011. So I know. I understand.
Practicing/filming/drawing is part of your essence–those talents will not go away in you. I have some of my own talents that have not gone away since 1997. We can and I think have to continue to do those things we like and are good at, even if we don’t get a rush of pleasure from it each time we do them.
Also I want to point out that Accutane and Lariam and Finasteride themselves directly cause a type of depression/antihedonia because they fuck with neurosteroids in the brain. So the pessimism you have felt is not your fault–it comes from our brains that have been changed by these medicines. So it is what it is, let’s be here for the cure or at least a good treatment.
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The aim is for multi-substance research but it may come down to focusing on PFS as a breakthrough patient group, with patients who developed this condition from other substances being part of further studies. There are a lot of contingencies. A bit like sailing against the wind.
The admins had a lead a couple months ago with a researcher showing intense interest in the big multi-substance picture, but communication with them halted without an apparent reason. We’re moving ahead with seeking out other researchers in the mean time.
Of note, the survey data is what piqued the interest of this researcher. That’s why we may appear to be aggressively promoting the survey. It works for its intended purpose, with patient groups other than fin-takers having much to gain from it.
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Thank you for your honest answer. I’m doing lots of propaganda for the survey but some seem to be a little bit lazy - and I almost can’t understand it why one couldn’t spend 50 minutes for a very important project.
Will we get some updates as for the project and contacts with researchers within the next months? I feel a bit hopeless these days sorry to bother
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I’m not certain myself and would rather avoid stoking the flames of false hope. Once research can be secured, there will be an announcement and requests for funding, depending on the outcome. Hate to give these nebulous answers, but until there’s something definite, that’s the best that can be provided.
This is disheartening, why can’t we catch a break. It’s also nice to know what’s going on behind the scenes, that something is being done.
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Yeah, we could definitely use a break. After nearly a decade, I’ve arrived at the point where it doesn’t feel like resistance, but as if the rest of the world is actively fighting against us.
We’ll eventually win because we’re in the right, we’re unifying, and we’re moving forward.
There wasn’t much resistance a decade ago because PFS, PSSD, and PAS were nearly unheard of.
Now, some of the regulators are beginning to take notice and the pharmaceutical companies and medical professions who have been ruining lives for years are being forced to resort to underhandedness.
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How are we unifying and moving forward, exactly?
There is talk expressing recognition of a need for that, but what has anyone actually done?