Ozeph: my story

Ozeph Profile

Where are you from (country)? Quebec, Canada

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Googled post finasteride syndrome

What is your current age, height, weight? 50 yo, 1.79 m, 63kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1.25mg a day

What condition was being treated with the drug? hair loss and too much sex drive

For how long did you take the drug (weeks/months/years)? 20 years

How old were you, and WHEN (date) did you start the drug? 30yo, year 1998

How old were you when you quit, and WHEN (date) did you quit? 50yo, 18 Aril 2018

How did you quit (cold turkey or taper off)? Cold Turkey

How long into your usage did you notice the onset of side effects? the last 4 years I started having increasing insomnia problems.

What side effects did you experience that have yet to resolve since discontinuation? see below

Sexual
[x] Loss of Libido / Sex Drive only a decrease. I had an exaggerated sex drive to begin with
[x] Erectile Dysfunction Slight decrease. it doesn’t affect me much
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[x] Watery Ejaculate it resolved by itself 1-2 months after I stopped
[ ] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm happened for the first time rescently
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat a little, not every day
[x] Difficulty Focusing / Concentrating Had it when I took fin, went away with the diet
[ ] Confusion
[x] Memory Loss / Forgetfulness Short term memory is not great
[ ] Stumbling over Words / Losing Train of Thought
[x] Slurring of Speech Had it the month after I crashed, went away with the diet
[x] Lack of Motivation / Feeling Passive / Complacency on some days. Diet does not help
[x] Extreme Anxiety / Panic Attacks Had it the month after I crashed, went away with the diet
[x] Severe Depression / Melancholy Had mild depression the month after I crashed, went away with the diet
[x] Suicidal Thoughts Had it with the anxiety, went away with the diet. Never took it seriously, I knew it was the disease playing me and I’m not a quitter
[x] Dyslexia.I was dyslectic to begin with but now it’s crazy. I invert letters on about 20% of words when I’m typing and constantly have to read and correct myself

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain For 1 year after getting a vasectomy, the year before I stopped fin. Maybe unrelated to fin
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease less genital sensitivity, amino acids seems to help
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness Had it the month after I crashed, went away with the diet
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
[x] Dry lips My lips gradually started to burn in the last 5 years before I stopped fin, especially toward the end. I needed to put vaseline on them day and night to get some relief. It gradually stopped after I stopped fin

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion Had it the month after I crashed, went away with the diet
[x] Stomach Pains / Digestion Problems Had it the month after I crashed, went away with the diet
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[x] Lowered body temperature sometimes, not often i feel cold. It seems to come with increased insomnia/poor quality of sleep
[x] Food intolerance I seem to have developed a carbohydrate intolerance after the crash. More below

[x] Other (please explain) in the first 3 months after the crash, I felt like a needle prick pain in a single spot on the scrotum, when I was getting closer to orgasm. It seems to have disappeared

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? I started with TRT but stopped it as it made me aggressive, then I got prescribed Alprazolam to counter insomnia which really shot my sex drive to the roof and made all sexual symtoms dissappear. I was also prescribed agomelatine to deal with the aggressivity and the insomnia.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? Everything within normal range except for lower than normal vitamin D despite taking 1000ui per day. Globuline at the highest limit but within range, cortisol also high but within range.

Here’s my story:
I always had a strong sex drive. At 20 I could close my eye, think about sex and have my penis touch my skinny belly within 10 second without outside stimulation. I also had a refractory period of about 15 second and was one of the few multi orgasm men (apparently it’s 2% of men). To me, it was more of a curse than a benediction as I needed sex more than 10 times a day. I was like “God, please make it stop !”. I lost many girlfriends because of this. Only on two separate occasions I met a girl that could match my drive. I though of having one of my testicle removed, and contemplated suicide many many times over the issue. Sorry to talk about this on a pfs blog but believe me guys: too much is like not enough. It both can lead you to think about suicide.
So when I started taking Propecia, I noticed a slight decrease in my sex drive and to be honest, I continued to take it more because of the sex drive diminution than the hair loss.
After taking it 15 years, I gradually started to have insomnia, headaches, stomach pain, gastric reflux, brain fog, problem concentrating and solving problems and extreme fatigue starting in the middle of the afternoon until I went to sleep (well, to bed anyway. I had insomnia…)
I took melatonin, magnesium, sleeping herbs and in the end had to rely on anti-histamine to get some sleep. It was getting worst and worst and the antihistamine started to make me feel even worst.
Then I realized it was only going to get worst. Something was poisoning me and i had to find what it was. First I had a root canal treatment tooth taken off as well as all the mercury in my mouth. It didn’t work and I’m now missing a tooth. Because the symptoms appeared around when I was 45yo, I thought it could have something to do with andropause and decreasing hormones. That’s when I thought of finasteride, as it affects hormone conversion. i googled finasteride and insomnia and was horrified with the search results. My doctor had told me it was perfectly safe ! I can’t express my rage enough although the doctor couldn’t know at the time. (but I’m angry anyway. Nah !)
The rest is more boring and you’ve read it before on other stories. I stopped and threw the pills to the garbage right after my google search. I finally had founded what was poisoning me and then for the next month I felt better. All symptoms got much better and I was so happy I got rid of my problem for good and could finally have a normal life… Until I crashed… On second thought, I should have googled further and learn more about this disease before throwing the pills and dismissing the whole thing. Maybe I would have tapered off instead of quitting cold turkey and at least I would have known about the crash.
So after the crash, the insomnia got worst. I went to see an endocrinologist and got prescribed some Alprazolam. It helped me sleep 2-3 hours a night and got me horny as hell but other symptoms started to increase: I had fatigue and brain fog, extreme acid reflux to the point I couldn’t lie down without having acid pouring down my throat, headache 4-5 times a week, extreme muscle weakness (I couldn’t climb stairs or sometimes even stand up), speech slur, depression and acute anxiety as I had never experienced before. Like a constant torture. I thought if I had to live another day, even less another week, i would have to kill myself. I didn’t know such thing existed. As time went on, I noticed I could stop the anxiety by taking a large dose of sugar, only to see it coming back a few hours later. The symptoms were worsening, I was getting very irritable and sometime violent. I had to take more and more Alprazolam to get only a little sleep. After multiplying the dosage by 6, I went back for more and was sent to the psychiatrist (I guess the endocrinologist finally realized he was dealing with a nut case !)
I was prescribed clonazepam instead of Alprazolam, as well as some agomelatine, a non SSRI anti depressor that improves sleep, decrease violence and is non-addictive. I’m sure those are not good, but if I don’t sleep and I start beating up a policeman on a street corner, I’m getting nowhere.
I could sleep better with that mix, but the sex drive went down and I started having more difficulties with erections and genital sensitivity.
Then, through a series of coincidences and synchronicities (if you believe in those) I stumbled upon a video of Jordan Peterson explaining he had anxiety, depression and complete insomnia and got rid of it by getting on an exclusively carnivore diet: only beef, salt and water. All his symptoms disappeared. He could sleep, didn’t have anxiety and depression and could stop all the pills he had been taking for years (SSRI and Ibuprocion).
That was the last time I ate carbs. I guess you could say I’m the impulsive type, when I go to the supermarket and watch my wife carefully look at all the laundry detergent for 5 minutes it drives me crazy. I’m like “just pick one for Christ’s sake. They’re all the same, they wash clothing !”
So anyway, I’ve been on this carnivore diet, to which I eventually added some very low carbs veggies as well as some coconut oil for 4 months now (It’s between a carnivore and a ketogenic diet). Almost all my symptoms have disappeared or decreased after 3 days and so far, of all I’ve tried, this is what has given me the best results.
A month later, I started weight lifting and taking a protein shakes. Things got even better although I had a few relapses after taking 2 chocolate truffles in a restaurant (3 days of anxiety), one cup of brown rice (a night of insomnia and a day of anxiety) and 3 peanuts (3 hours of anxiety. one for each peanut ! ha ha !).
I went from not being able to stand up to running 5km or swimming 1250 meters. I lost 22kg of fat and I now have the same slim body as when I was 28, except with more muscle. I’m getting a six pack ! Wow !
I started looking into amino acid after reading alteredlife post and got very interested but I live in Thailand and none of that is available here. I had to ask a friend in the US to help me smuggle some into the country.
I’ll receive the first package this week, so in the meantime, two weeks ago, I started juicing cabbage, kale, bok choy, and started taking another protein shakes just before going to sleep.
Sleep got even better. I would wake up only a few times, be very drowsy and got right back to sleep… Then I relapsed again. I don’t know if it’s too much amino acids, or the fact I can’t balance them as it’s just a protein shake, not singled out amino acids, or maybe it’s the veggie juice I took. They contain DIM which is an anti-androgen, but I decided to stop all that and went back to my previous diet with a single shake a day.
But to no avail. insomnia is increasing, as well as the other mental symptoms, and I don’t know about the sexual ones as I didn’t have sex for a week and does not feel too much like I want it (so I guess that’s my answer about that).
So I will receive my amino acids soon, and keep you guys posted on My regimen, and it's working (although it’s not MY regimen, but alteredlife regimen. He’s the one that came up with the idea)
Altogether I think I have nothing to complain about. As far as pfs goes, I think I have it easy. It’s just hard to keep up with such a restricted diet. I wish all could come back to normal (ha ha ha ! How about you guys ? Don’t you wish that too ?)
With all my heart, I wish the best to you all.
Ozeph

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Ozezh,how do you feeling now?

I’m feeling much better. I still need to take meds and herbs for sleeping, but I manage to sleep quite good. I still wake up after 5-6 hours and turn and toss in my bed for another 3 hours, but I have lots of sleep in those 3 hours and have many dreams. When I get up, I feel rested and have a normal day although sometimes I’m a bit foggy.
It still happens 1-2 times a month that I have a bad night and I feel brain fog the next day.
I can live what looks like a normal life, except I’m still on the ketogenic diet and I eat only once a day.

All other symptoms are gone. Sexuality is normal, strength and energy is normal, I do body building and I’ve never been in better shape. Mentally, I can concentrate and last IQ test I passed, I got 10 points more than the last one, when I was much younger.

I’m not cure. I don’t even know if I can stop the diet, and I’m pretty sure if I stop the sleeping meds I won’t sleep and won’t be able to work. But I live as much of a normal life as I could wish for, considering how bad this disease can be.

There is still progress, little by little, but it’s much slower now. Still, I believe in 2-3 years I will be very close to normal. I’m always optimistic !

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It sounds good. You are gradually recovering. As long as you can have sex and work, life is not too bad. I can erect slowly, but my brain fog makes me crazy. Damn, it has been nearly three months. It makes me make a fool of myself at work

Yes. I know. I also didn’t look good in the first few months. Whatever, we have to keep going !

Self-reporting form Do not read, I’m just copying it here for convenience.

  1. Name of the therapy/substance: _____
  • Dosage: ___
  • How often you took it: ____
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [ ]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [ ] Months [ ] Years [ ]
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Current response (if you’re still using) OR Response in the time before you stopped the treatment
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]

14 months ago I made the post bellow. It was pretty good back then but there was quite a few changes since.

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Hey @Ozeph - when did your mental sides begin to clear up? Tried going through your post, and you had an unfortunate myriad of symptoms, but did you suffer from the foggy disconnect? Resolved by diet?

Yes indeed it did. 6 months ago I would have a few bad days a month when I had bad sleep but now it’s pretty much all good days.

To be more specific, emotions and pleasure came back. I’m focused, motivated and have good morale.

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How would you say is your libido and erections compared to pre fin?

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Pre fin, I was 31 yo and I had raging libido. Now I’m 54.

Erections are the same but libido is lower. Is it PFS or age ? IDK but I have more libido than my friends of the same age.

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I wish to say, for the record, that you served as a light of hope for me in my darkest days. Many thanks for the inspiration!

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You’re welcome and thank you for saying it. I’m happy to make a difference, it brings out some good out of this whole ordeal.

There’s reason for hope. I’ve been in contact with lots of people who has gotten better and can now live pretty normal lives. We don’t hear much from them as most just wish to move on but they’re out there, having a life past this disease.

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Ozeph, I will second what Taw has said. I could always count on you for advice when I was at my worst. You helped me through it and now I consider myself among the recovered along with you. Thank you.

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Thank you for saying that. It means a lot. I’m really happy you went through it and can now live a normal life.

I wish all of us here to have that. I think it’s possible. I’m not posting a lot but I’m working on something.
Lol… And it won’t be to make money. I already have what I need. I just want to help.

I too was desperate, anxious, insomniac, depressed, suicidal to name just a few… I hanged to a thread. It’s the hope of something better yet to come that kept me going. I wanted to share that hope because it saves lives, and because there is cause for hope !

If all those who recovered to a great extent and can live normal lives would post it like you did, people would know this disease is not automatically a life sentence.

Thank you again for posting. By doing this, you give hope to others and it’s important !

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