suicide

Symptoms Neurological
#205

To say it differently: I am addressing those people, whose symptoms have not improved over a 12-month stretch, despite them living a healthy lifestyle.

Basically, a classical chronic PFS case. Its very normal to experience symptoms while on the drug, that then disappear within 1 month after discontinuation or “the crash”.

This is what one of the leading scientists says re PFS:

Is it possible to recover from the syndrome?
Unfortunately, there is no way to “go back” and return one’s body to the state it was in prior to using the drug. “Many studies have been carried out by now, but we still have not succeeded in even precisely defining post-finasteride syndrome. It will take years,” Melcangi adds.

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#206

Normal. I started the carnivore / zero carbs diet the month after I crashed. Most of my symptoms mention: Had it the month after I crashed, went away with the diet". I am certain they would not have disappeared have I not done the diet. Some symptoms went away 3 days to 7 days after stopping carbs. The contrast was such that it leaves no doubt to me the diet is responsible.
Other symptoms took months to disappear. My balls were hurting 24/7 before and after the crash. I’m pretty sure they were being attacked by my immune system as they actually seemed smaller. 9 months into the diet they barely hurt anymore and 15 months in the diet they don’t at all.
I believe I stopped the process. What do you think would have happened if my balls had time to shrank to the size of raisins ? How would that have affected my other symptoms ?
And If I didn’t stop carbs and went on having panic attack, depression and anxiety everyday ? How would that had affected my condition. It’s hard to think it would have made it better and improbable it would not have made a difference.

I don’t agree with the idea of doing nothing for 3 months until it settles down. In my opinion, the sooner your body starts producing ketones (and is carbs free) the less the damage has time to take hold. Babies are born in ketosis, it is obvious to me (that means it’s my opinion) we have a carbs epidemic on this planet and more than 50% of the population would benefit being in ketosis, at least occasionally. Our life expectancy is now decreasing, we’re obviously doing something wrong as a specie.

But I have to grant you one point. I took fin 20 years and got sick after 15 years. I continued fin while getting worst for 5 years and crashed when I stopped. In the opinion of the administrators, pfs can be more severe if symptoms (and crash) appeared after only a few doses. And I say “can be more severe” because there are those who got symptoms with a few doses, stopped, didn’t crash and symptoms went away. They don’t post in this forum.

Yesterday, I got up from bed to pee after sleeping 3 hours. I was not able to fall asleep after that. I spent the whole day being brain-fogged and demotivated from the lack of sleep. I have persistent symptoms 16 months after crashing. You see, I’m not symptom free, I still have insomnia and a bunch of other smaller typical pfs symptoms that were bigger to begin with and slowly decreased.

But as I said, you’re free to believe what you want. If you think hope is dangerous, that’s your prerogative. I think you’re wrong as I’m also free to believe what I want.

Best luck to you !

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#207

Not true only 3-12 months sufferers did recover and not to mention substantial achieved improvements. I am too tired at the moment to give You examples, maybe tomorrow. I am really not sure what exactly are You trying to achieve here with that hopelesness messages all over, but trust me that what You will achieve will be opposite to Your goals. You may not be aware of it but it will actually discourage people from bringing any more people over here and raising numbers and I doubt this approach will drive people to fund anything at all. They most likely will be left with a distaste towards anything regarding any activity here. Thats my opinion

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#208

I know that but they are very few people with often shady motivations. I am saying that a guy who says that most symptoms disappeared within 1 month after cessation, and who also took the pill for 20 years and who is now almost symptom free, who says that PFS might not even be in his top 5 list of worst things that happened to him, is a very mild case if he is a case at all. His diet has nothing to do with this, no matter how strongly Ozeph believes this. His body reacted much better to the situation, that is the main differentiating factor, not the silly diet. This should be blindingly obvious to everyone, as otherwise there wouldnt be a problem!

I am addressing those people who have a chronic case, who believe they will find the magic pill or homebrew remedy or who hope that CRISPR will safe them quickly. Its very likely not going to happen. So plan accordingly. Make long term strategic decisions with your resources, instead of gambling them away on things that are the equivalent or worse than buying a lottery ticket.

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#209

If we have not succeeded in even precisely defining post-finasteride syndrome, how can we access with certitude that there is no way to “go back” and return one’s body to the state it was in prior to using the drug ?
There’s a contradiction in the very sentence.

And that’s the opinion of one scientist. There are scientists whose opinion are that the drug is safe. Do you think scientists are holy men and only truth comes out of their mouth ?

In my opinion, you believe in science too much. Don’t forget it’s science that got us here. Science could very well come up with yet another drug that would turn the test subjects into mutants.

But again, you believe what you want, it’s fine with me. So fine indeed that I will stop arguing about this. I will let you have the last word.

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#210

Ah, ofcouse, I forgot, everyone who is beyond the 3-12 months measure must be a shady person. Or some troll. Or mild case. I am sure You have some other explanations as well. Alright, anyway, I wish You good luck with “achieving” those goals and good night

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#211

What you’re saying is borderline insulting. I find it offending.

What do you know of people’s life ? I mean those you cross on the sidewalk ? You think life is fine and dandy for everyone ? Pfs is only one of the plague around.

My second wife abused my two sons at the age of 2-5 yo, she threatened to kill them, kill me, disappeared with the kids if I didn’t give her money (basically a ransom). I care more about my children than about myself. I fear more about their pain than mine and I would gladly give my life so theirs could be save. Of course, that’s worst than pfs as pfs affects only me and I’m Ok with suffering and dying.

I was neglected as a child (no food, no clean clothes). Maybe that’s why I have compassion for others and children in particular.
I had 25 years of deep depression from 9 yo to 34 and I was a centimeter away from killing myself at 28. I consider that worst than 5 years of pfs physical symptoms and 1 months or so of anxiety and depression before I took the diet (I had so much in my life already).

And you know what ? I know people that have it worst than pfs sufferers. Way worst than what I had. Some of them are dead already.

Man, you should get out of yourself. Try and help people. If you don’t have the strength to do volunteer work, than at least use your computer to make people feel better. It would do you good and do them good as well.

Good luck on your journey.

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#212

On second thought, forget all I’ve written. The disease makes people act this way and it’s inconsiderate of me to dismiss that and take it personal. @pvdl, you have my apologies.

And again, good luck on your journey.

#213

I think sometimes. If that moment comes to me someday, what reward I will give me. This thought gives me hope. I hope you can say that everyone in the forum has recovered and worked well together.

#214

While suffering is relative, I can’t believe you think you could make that statement and genuinely believe people would not find it insulting here.

There are people here who are plagued with suicidal thoughts throughout the day. The severity of this greatly varies between the patient population. There are some people for which this is very clearly the worst thing that’s ever happened to them, and that isn’t because they haven’t experienced any suffering in their life, it’s because it’s hit them much harder than you can fathom.

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#215

Than for them it’s their # 1 suffering.

I don’t mean to be dismissive of other people’s suffering ! At any rate maybe it just means my pfs is not as severe.

But you know, someone who was burned alive and survive with 3rd degree burns on 90 % of his body could certainly say something about pain.

Nevertheless, it’s not a contest. Someone’s pain and distress is integral and independant of other people’s pain and distress.

It’s been my experience that knowing my children were abused brought me more pain and distress than pfs. As I said, I don’t care much about feeling physical pain.

I rate pfs as my 3rd or 4th worst life experience. I did say maybe 5th in another post. The reason why is because despite the inconvenience caused by the disease, I’m not depressed as I have been most of my life. I’ve been suicidal since I was 9. Actually, first attempt at 4.

I apologize if I hurt people’s feeling on this. I was angry when I wrote that post because the man was making ridicule the diet I believed saved me from the worst.
I may have had pfs as #1 if I didn’t take steps early on, or maybe the man is right, I’m not a severe case and the diet changed nothing to my pfs.

It doesn’t matter, reality is not changed by how we perceive it.

I believe in speaking the truth no matter the outcome but if you knew me you would know I never wished harm to anyone, on the contrary.

#216

Ozeph, I really believe you’re a good person, but, no offense, I really believe you had just some months of collateral effects.
PFS cannot go better. Everyone tried every kind of supplement, but many of us crashed on them. Lot of people tried keto diet, and didn’t work.
I repeat, NO OFFENSE, but you don’t have PFS.

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#217

Debates about who has PFS or has the worst symptoms etc etc does it really matter. Will it change our situation? Everyone here already knows about PFS. If we put this time into educating those outside of the forum it could really help to bring attention to what’s happening. Don’t accept negativity from someone you wouldn’t go to for advice.

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#218

No offense taken. I actually hope you’re right.

Reality is not changed by the way we see it. I am the way I am no matter what label we put on me.

I crashed, had all the typical symptoms of pfs and I’m still struggling with insomnia.
Pfs kind of insomnia. I take 7 drugs and herbs, all from the hypnotic family, in order to sleep and I always wake up after 4 to 6 hours. Better than before, a year ago I would get only 2 or 3 hours.

If I deviate slightly from my restrictive diet, I get anxiety, like I did yesterday and today. I lost 30% of my body weight and my skin doesn’t heal as it did before.
Body odors come and go. I don’t always wear deodorant.

If I don’t have pfs, which I hope is the case, than I have post usage of finasteride symptoms.

However we label it, I still have to remain strict on the diet and I’m now pushing on Butyrate, BHB and fasting, hoping to repair epigenetic damage so I can sleep without pills and eat normally and not have anxiety. Getting back my full sex drive and gaining weight would be nice too.

I think I am a milder case of pfs as I took the pill for 20 years, 15 of which without symptoms. But as I said, whatever label we put on me does not affect reality. Only my ability to share on this forum.

Other people have had success with time, 0 carb diet, exercise and fasting. Maybe they were mild cases too, I don’t know and I’m not being sarcastic.
I don’t believe too much in supplements. They may help with some symptoms but they don’t cure anything.

I will restrict my posts to the threads I created and not intervene in other posts.
This way you will not have to deal with someone suggesting a possible path to recovery whom you believe is not sick to begin with.

I wish you all the best.

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#219

finally someone on this forum talking COMMON SENSE… for christ sakes I was a healthy 21 year old horny , fit, full of zest for life etc…

Never took prop/fin/accutane/ssri. Did a crash diet and overtrained in summer of 2016. Lost 30lbs in about 1 month. Lossed libido, morning/spontaneous erections, low semen volume force, dry eyes, musky armpit odor even after washing, prostate feels off + testicles too, high and tight scrotum, stress incontience, genitals feel numb like rubber…

I have desperately searched all over the internet and have found people told me to get my dht, and e2 tested. These are 2 things I have never heard of before but sure enough they both came back below ranged despited having a total t in the upper 600’s… If the doctors say you are fine, and you KNOW you are not, should ring an ALARM in any sane persons mind.

How can my genitals feel like rubber? Here I can accept a doctor saying its in my head, (maybe dopamine)
Why did I start to leak urine at the same time? Also in my head?!
Why is my scrotum always high and tight? Maybe its depression?
Why is my morning+spontaneous erections completely gone? Low self image?

Like come on guys… listen to your damn body. I almost believed I had cauda equina syndrome becuase of these stupid doctors , even though I knew in my heart it was hormonal… I believe the issue is T:E2 ratio… not lack of dht that is the issue…

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#220

It’s really disappointing that ozeph feels the need to explain his PFS to the forum because of a few people making claims about someone they’ve never even met.

I thought medical issues would make us more humble and tolerant towards fellow sufferers but human beings continue to surprise me.

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#221

Did you guys know that we are 33 weeks into peer review of part 1 of the baylor study (average is 17 weeks)? Can you see now why there wont be a quick fix for any of this?

This stuff will stay with the chronic sufferers of PFS for the rest of their lives if we are not very lucky!

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#222

Over 4 years for me now…My health and physical fitness continues to worsen…Mental sides come and go but physically I would be considered a disabled person…And look like a mutant now…

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#223

Yes, its really ridiculus the whole thing. No guilt on at PFS Foundation and the people here who manageing the site and surveys of course, because they are truly heroes.

I think the hardest part is the small hints from the doctor when people contacted him which made people have some hope and expectation. And the time frame is really shamefull

My impression is that after they locked the baylor thread people slowly lost interest in general here on the site? It feels less active but thats just a feeling of course.

#224

@holyhead you should make a youtube video speaking about what the medication has done to your life over the past 4 years. You would be potentially helping many guys.

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