My Story - Looking for immediate guidance

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
USA

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?)
Reddit

What is your current age, height, weight?
34, 5’8, 175

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.)?
0.5, M-F

What condition was being treated with the drug?
Hair Loss

For how long did you take the drug (weeks/months/years)?
~8 months

Date when you started the drug?
June 2023

Date when you quit the drug?
Feb 1 2024

Age when you quit?
34

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

How long into your usage did you notice the onset of side effects?
Minor side effects like watery semen while on finasteride

What side effects did you experience that have yet to resolve since discontinuation?
Brain fog led to discontinuation, others have developed since.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ ] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[x ] Confusion
[ x] Memory Loss / Forgetfulness
[ x] Stumbling over Words / Losing Train of Thought
[ x] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ x] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)
Insomnia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Just taking vitamins as my blood panel showed low vitamin D

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)?
No hormonal blood test

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I was on Finasteride for 8 months, no real side effects or not anything I noticed. I woke up 15 days ago with brain fog like I’ve never experienced so I immediately quit Finasteride. I seemed to recover pretty quickly, was still melancholic but I didn’t have any side effects.

48/hrs ago I woke up with morning wood and thought that was a good sign that I was improving, but after that erection went away my day spiraled. My anxiety ranked up and for the last 48/hrs I haven’t been able to sleep or get an erection.

My next immediate step is two reach out two urologists who are local to my area, both say they treat PFS patients but don’t disclose much else on their website. I found them through the portal this website recommends.

I’m likely 48/hrs after weaning off, but the severe insomnia is crippling. I need to address this right away. At this point I’m assuming insomnia means I have PFS and I want to explore my options with a doctor.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. 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 [ ]
#2

Have you managed to sleep since this ?
I’m sorry… it sounds all so familiar , and is not a nice situation to be in.
I’d say at this stage, don’t worry too much about thinking it’s PFS and just concentrate on feeling better - general consensus is, if you still feel this way 3 months in with no change then it’s likely PFS…
In the meantime , if sleep is still difficult maybe see about getting that addressed with doctors. When I first had this issue (insomnia has been my no 1 symptom) I used Eszopiclone for those first six months … just to get through the sleep deprivation hell.
I wouldn’t recommend these long term , as I feel over time they mess with the circadian rhythm .

I think at this stage , from what I remember - it’s the shock of the level of Insomnia that can play on your mind. I mean , everyone has occasional nights of insomnia …. But this is so extreme , it plays with your mind in itself. In the early days I often had 2 nights in a row of nothing, which I didn’t think was humanely possible. It just shows how evil this thing is to do that to someone’s body. Anyhow, my suggestion is to keep doing the things that will naturally help you fall asleep, diet , exercise, getting some ViT D …. Keep getting up at the same time regardless of how many hours you sleep (no lay ins!)
Just remember you’re not alone, many of us have had the same thing here, and our sleep has generally improved with time. Best of luck and be well !

#3

Hey thanks for checking in. I’ve gone pretty extreme right out of the gate. Immediately into carnivore diet and last night I took a wim hof class.

First three nights of symptoms only slept about an hour a night each, with no real “sleep”

Last night I did a very intense breathing exercise that was unlike anything I’ve ever felt - it actually knocked me out and I slept for about 4 hours and even had a dream.

Will continue with this approach - carnivore, sunlight, light aerobic exercise with body weight, sauna, cold shower, and breathing exercises to fight stress.

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#4

It sounds like you know what to do , you are already doing the right things for sure!

Of course , I’m stating obvious - but tempting on no sleep to binge Netflix or gaming marathons etc but this will only make things worse , trick is to get out there , let the adenosine build up naturally through the day from exercise and sunlight stimulation….

This breathing exercise sounds immense , any further info on it ?

#5

Yes, here you go. I’ve known about Wim for years. Truly fascinating. I took the free course yesterday but will likely take his 10 week course starting today (breathing, cold water, meditation) to control your nervous system and align mind and body.

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#6

I should also mention i wear over ear headphones, with white noise on repeat and wear a heavy eye mask too.

Those two plus the breathing method worked well. You’ll realize when you do this that you put your body in a semi hypoxia state. But in doing so you shut off all the thoughts in your head.

At least it did for me, allowed me to sleep for a while.

#7

Using this space as a personal diary to myself.

I’ve told my parents and have educated them. They’re totally in support and understanding. It helps that my mother is a pharmacist.

I’m telling my GF. I’m terrified. But she needs to know.

Like many of you I’ve spent countless hours scouring these forums.

I have managed to alleviate some insomnia with magnesium and melotonin, but what really helps is intense, deep breathing exercises (15+ min) multiple times a day. It activates my parasympathetic nervous system and tricks my body into relaxing. It helps, often for an hour or two.

I do this in bed to fall asleep and I was about to get four hours a night the last two nights. I also sauna and cold shower 2x a day.

So right now it’s diet (pure carnivore), vitamins (d), minerals (magnesium and potassium), stress relief (sauna, ice cold showers, and wim hof breathing)

Today I’ll felt increased blood flow to my penis and increased sensitivity in the head. I don’t know what it means, I haven’t even tried to get an erection - talking to urologist I found on this site on Tuesday.

I worry my will be long, but with discipline I believe I can rebound.

#8

Update - day 6 after crash.

Last night I took 3grams of Glycine and 10MG of Melotonin 30 min before bed. I went to bed at 1130, did a deep breathing exercise and slept until 130. I tossed and turned for an hour, but fell back asleep and had REM sleep from ~230 to 530. My goal was to sleep until 6AM.

This morning I felt okay after the sleep. It seemed my mental clarity was pretty good. I did 20 min aeorbic exercise on the bike, and 3 sets of dumbbell curls, and 3 sets of shoulders at low weights.

The density of my muscles is decreasing, and I can’t get a pump.

I followed this up with 15 min in the sauna, and a 3 min ice cold shower.

It was tough to focus at work throughout the day, but in the early evening I was feeling okay. Ranking my symptoms:

Anhedonia (6/10) - I can laugh, I got sad when I talked to my mom.

Brain fog (4/10) - It’s there, but it’s not as strong as it was.

Libido (4/10) - my brain is telling me I want to have sex

Body pain/aches (1/10) - very minor, and it doesn’t last.

Ability to get an erection - ZERO - although admittedly I have not tried very hard.

Other random things I’ve noticed - oil has returned to my skin, I’ve lost the hair on my hands, I can feel blood pumping into my penis. My testicles have grown in size.

Seems my hormones are all over the map.

Current supplements

AM -

Noon - Vitamin D and potassium with Lunch, which is one big rib eye steak

Evening - Glycine and Melotonin at 11PM

Planning to rotate in some Magnesium

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#9

Quick update - it’s hard to tell on this forum if people experience oily skin as as a symptom. Almost all search results return dry skin as a primary symptom.

What’s interesting is that my oily skin has started to return on my forehead. I had that yesterday, and today I woke up with two erections - one in the middle of the night, one in the morning. Albeit they were not super firm. This is one week on from my crash.

My googling has shown that 5ari is promoted when we consume high dietary fat.

“ A high dietary fat intake induces prostate 5α-reductase gene expression and potentiates androgen action by increasing the conversion of testosterone (T) to DHT. The elevated androgen action subsequently stimulates the proliferation and then transformation of prostate cells in concert with other dietary fat actions.

Thus, it seems that my carnivore diet (70% fat) may encourage 5ari production. 5ari production is important for DHT conversion, and androgen product. This may confirm why my oily skin and erections have returned.

Hopefully a few more weeks of this can clear up the mental aspects. The diet has largely clamped down on the neurological.

#10

Another daily edit. I’m trying to understand my timeline. I took finasteride for months and developed the severe headache and brain fog while still on the drug. Wondering if I crashed while on finasteride and then my symptoms got worse 14 days after it had worked out my system.

It went like - feeling somewhat normal for months/year - then ran brain fog/headache one day - immediately quit drug - slight recovery 10 day recovery - full crash that included depression, anxiety, anhedonia, insomnia, ED, etc…

Anyways, it’s been a week since the real crash. I seem to go in waves throughout the day. Mornings are tough, focus and energy are low but they pick up steadily through the day. My evenings are a bit more focused, but I’m still emotionally flat. Sleep is an utter chore. Basically getting 2.5 hours, followed up 4 hours of slight naps. However the deep breathing exercises keep putting me back to sleep, even if for 20-30min at a time. I’ll take it.

#11

Strange, afternoon update - I basically feel back to normal on this day. Laughing at jokes, listening to music. Emotional blunting has largely lifted. Strong connection between body in mind, but I’m not going to attempt anything sexual yet.

The only thing different today than those prior is the steady introduction of magnesium to my diet. I suspect this won’t hold, but it’s good to see I can have up days.

1 Like
#12

All I can say is keep going …. Keep doing the right things, as you have been.
Still early days…. Fingers crossed you might just pull up out of this all before the 3 month mark.

I think little things like feeling sad after talking to your mum are actually a good sign - the dynamic in emotional interaction is a good sign things are getting towards where they should be :+1:t3:

#13

Yeah I’m seeing some good signs, but I know recovery is up and down. Yeserday afternoon I felt mentally 75% myself. Laughing and joking around. But it didn’t last very long, just a few hours. But I’m trying to see it as a positive sign. I had no emotions last week and yeserday I felt good. Feeling flat today after a bad night of sleep.

#14

Sleep was horrid last night, so I ended up in a daze all day. Very tough to focus.

Some more supplements arrived. Some of which the Dr. recommended.

Diet status: Full Carnivore - only fatty beef. One or two times a day depending on my appetite.

Exercise: light body work (pushups, planks, pull ups, yoga) and 1 mile run on treadmil - no longer than 30 min daily

Body treatment: Sauna and cold shower in the morning, repeat at night

Supplements:
-Morning: Propionyl-L-carnitine (Dr. recommended) on empty stomach

-With meal: Vitmin D3 (2000 IU) and Magnesium Citrate

Sleep: Experimenting…tonight I will try Apigenin with Magnesium Threonate.

  • if no results I will try adding in l-theanine (Huberman recommendation) or Myo-Inositol
  • if no success with these supplements I will move to more drastic measures like CBD or Xanax - I need sleep to recover
#15

Careful with supplements you can make yourself much worse . Some users have had horrible reactions to vit D. Not saying you will but be cautious in your haste to recover.

#16

Thanks, I’ve been going pretty slow. I’m not taking super high amounts of anything, I’m only taking naturally occurring vitamins and amino acids.

Reading other people’s stories doesn’t give any insight into their health and lifestyles before PFS, which will certainly have an impact on recovery. I don’t seem to have a lot of the severe sides that others are experiencing.

I also seem to be rebounding pretty quickly so far. Last night I got seven hours of sleep. Hoping I’m a mild case and in the 1-3 month recovery window.

Wish me luck.

#17

Seeing some positive signs. Hopefully they last.

Morning erections every other day. Also today I had a random, full erection. I actually haven’t had a spontaneous erection in years so this is promising.

Sleep has improved, I took less Unisom last night and still got 7.5 hours.

Current protocol is propionyl-l-carnitine in the morning before working out.

30 min weight training, 20 min sauna, could shower.

Come home and do meditative deep breathing.

Take magnesium citrate and vitamin d3 with my morning meal (10/11am)

Evening meal around 530/6

Sleep protocol is currently glycine, magnesium threonate and one unisom.

I’ll try removing the unisom soon.

#18

Hey. I was wondering if you could give advice for sleep? I’m in the same boat as you, side effects started 1 month ago.

I keep waking up in the middle of the night. I’m taking 10 mg of time release melatonin, but it’s not working. I’m waking up after about 2-3 hours of sleep, sometimes able to go back to sleep and sometimes no.

Also, are you experiencing any libido issues or heart related issues?

Thanks.

#19

I’m not having any libido or heart problems. I’m feeling pretty good at five weeks. Not severe like lots of people on here but definitely going through it.

As far as sleep, I still wake up 2-3 times a night.

Unisom helps, but take it sparingly.

The best thing for me had been glycine, magnesium threonate but most important of all has been intense breathing exercises.

Wim Hof to bring down anxiety, and box breathing (4-7-8), google it, to fall back asleep if I wake back up.

I went four nights without sleeping. Now I sleep 10-730 and wake up two times and can get back to sleep almost immediately with a breathing exercise.

Hope it helps.

#20

I was just going to make a comment on box breathing and you beat me to it! Box breathing is a great tool which helps with insomnia when I wake up in the middle of the night. They studied this breathing pattern on the navy seals as they needed to be able to relax and fall asleep under stressful situations. Like you, I also take magnesium and usually CBD before bed, but if I wake up anxious in the middle of the night, box breathing “forces” the nervous system into a more relaxed state so to speak by force regulating a more relaxed breathing pattern, which helps with falling back to sleep…

The body will tend to want to take a big inhale when anxious, and box breathing forces a long exhale and hold. At first it feels like you are desperate for the inhale, almost like being underwater, but this is exactly why you need to fight through it; force the body to do a regulated exhale and hold before the inhale.