Didgeridoo Story

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)? Spain

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?) Google

What is your current age, height, weight? 37, 1’78, 78 kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Accutane when I was 18, and finasteride with 26.

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg per day at the beg., and then every other day/3 per week.

What condition was being treated with the drug? Alopecia

For how long did you take the drug (weeks/months/years)? around 6 months

Date when you started the drug? I don’t remember exactly

Date when you quit the drug? I don’t remember exactly

Age when you quit? 27

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

How long into your usage did you notice the onset of side effects? I noticed side effects since the first pill. I then discovered that the sides were disapearing the next day, and 2 days later even better, so I started “playing” with the days depending on my needs.

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

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

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

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

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] 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)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I tried the natural pathway

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)?
I don’t have pre-drug tests

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 am a PFS sufferer for 10 years now.
Key points about my case, that I think may trigger PFS:
*I took accutane in an earlier age, before finas.
*I was playing with the days I took finasteride (every 2-3 days), feeling how I feel the sides the day I took the pill, and how my system tried to restore normal functioning the days after.
*I am prone to suffer autoimmune diseases (alopecia areata for example).

After finas discontinuation I felt veeeery well. I still remember I never felt as good as these days. I do suspect the DHT going again through my body felt great.
Then, after 3 weeks with that extraordinatory state, I suddently crashed overnight (I think, we should focus more on the crash to understand PFS). Very heavy crash with all
I managed to re-do my life after PFS, with a natural pathway, relaxing my life as much as possible during months.
during these years, I was able to maintain a pretty good state, good carrer as engineer, with girlfriend, traveling, having morning erections every day, maintaining a good physical condition, going out during the weekends…but of course I haven’t reach the 100% pre-finas state.
I still suffer some loose of libido, erection dysfunction, loss of motivation and constantly a bit anxious.
I wanted to get the 100% recovery, and I was thinking on taking some chemicals cause I see that TRT is being more and more usual and a lot of normal people with my symptoms benefits from that.
That is why I came back to the forum trying to find people recovered with these kind of therapist, but then I see very few or none…so I am a bit disappointed right now tbh.
Will see!

1 Like
#2

hi didgerido!

I am a PFS sufferer for 9 months. Unfortunately still almost no improvement. just waiting and praying for recovery everyday.

Thank you for telling your story. I’m glad to hear that you got improved to a certain degree. if not 100%. How long did it take to achieve your improvment after the first crash?

1 Like
#3

No worries, I’m happy to share. I would say to start feeling better…around 18 months with a huge change of lifestyle.

#4

Thanks. 18months is good news for me. I hope I will be better in the next 9 months as you are.

What did you do as “a huge change of lifestyle”? “relaxing my life as much as possible” ?

#5

By the way, I don’t recommend the no-fap. I do recommend to fap from time to time, and every day when you feel you can manage it.
Like any muscle, the balls will atrophy if you don’t use it.
Don’t push for that, listen to your body, but if you can and you minimally enjoy it somehow…my recommendation is to do it.

1 Like
#6

Yep, but not only.
At the end I understood I couldn’t have the same life I had till that moment, and it would be better for me to accept it and make the right decisions.
I changed my job to another one much less demanding. I had a nap after lunch every day. I took the sun if I could. I stop going out with friends or girls, that was not my life any more and I felt uncomfortable. I change my diet with more raw foods, avoiding refined sugars or processed foods, like a non-celiac diet. I tried to avoid the forums and focus on a more spiritual life. And then…time, I do suppose I was lucky to feel the progress and after several months I felt better and found a partner who understand my state and was not pushing me at all. Now my life is very different that it was after the crash, but again, not at 100%.

2 Likes
#7

This is what I want to know. OK, I follow your advice.

And I understand and agree with your thinking about life. 3 months ago, I could not accept such thinking yet. But now I can. it is not easy to put it into practice, you are great. I will try it.

Thank you.

1 Like
#8

Many may call BS on it but I’m sure that one of the major reasons I healed to where I currently am is because I also continuously reconditioned the whole time, I had a theory that cell memory also plays a role in this condition somehow and have noticed all the pathways I had neurologically before were still there but it’s like my brain was post crash suddenly unable to remember how to activate the circuits again. My theory is that after the cascades that get disrupted by the drug occur something that should not ever lose a feedback loop stops working and the body relies on a related memory cascade from this process to continue functioning. When this does break down to restore it again you also not only need to restart the basic cascade but the memory loop also needs to be restored. This may be an area of science we don’t have much information on, thoughts and intentions shape so much of what our bodies response to our environment is. Memory is probably one of the most complex functions of the body next to sexuality.

I remember the time when the sexual dysfunction began and it wasn’t just ED. I was just going to do it one day not just my dick but my brain itself would simply not recognize sexual stimuli much at all. The orgasm felt like nothing and produced no pleasure either and I was just barely able to get it up after tons of manual stimulation for god knows how long so almost no dopamine or anything was activating either.The fact though I had the urge to do it and found out though also implies the parts of my brain that control that process were still online and recognized attraction but like I said my brain seemed to simply not remember how to do anything related.

#9

Yep, it’s like being always in a fight/flight state for the brain, hard to relax ourselfs.

#10

By the way, about the fight/flight state…have anyone tried this technique to aliviate it?

Seems interesting.

#11

I have heard of it and considered it but even with it being safer these days I’ve decided against it since I tend to have bad reactions to most things I throw at my body these days. Plus like he said this won’t completely block that but I also found that when I crashed at my worst I lost that fight/flight reaction altogether and I realized that blocking also limits my functioning. I was considering it long before getting this condition for PTSD and now that I’m more healed again I’m back to largely dealing with the PTSD, some now residual to the experience of this condition but luckily it’s not too much besides some select chunks of memory of time during it. I found some internal body focus techniques that kinda work for keeping me more stable when I get stuck in an ever ramping up fight/flight response but it only makes me more stable and functional on the surface as much of my brain is still going nuts.

I think the best thing I can really do is extreme environmental control, it’s really the only other thing that works. The more disorganized my environment is the more free floating anxiety will be floating around to snowball into the main response that is so deeply hardwired into my brain that I don’t think I’ll ever be able to undo it, The roots of my responses go back to early childhood before I can remember much, a lot of those I had then I still have today and they’re much stronger from a lifetime of involuntary retraining of them. Once my response gets triggered (and they are numerous) it feels like an out of control electrical signal going through my entire brain and I get partial facial muscle paralysis/vocal dysfunction too, and it’s near impossible to shut down when it gets to that point which comes on very quickly so I largely need to avoid the build up altogether. I’m willing to try ketamine therapy but I don’t know where I’d sign up for something like that where I live if it’s even available here. I’ve been working on this for over 6 years now actively and I’m only this far with it.

#12

Hi again,

There is something very important I forgot to mention: right after the crash i had a severe episode of alopecia areata on my head. In order to treat it I went to the dermathologist and prescribed me corticosteroids for months. My alopecia areata improved and I ŕesume the treatment.
Not sure, but I think this treadment could improve also my pfs symptoms and helped me to recover my general wellbeing.
My theory is that pfs is autoinmune realted, that is why pfs people generally improves following a healthy lifestile and we don’t respond to hormones as we should.

1 Like
#13

Interesting interview to Bryan Johnson.
He mention 2 things are key for him as sign of health: sleep & nocturnal booners. I cannot agree more.

#14

I just want to add that I took a similar approach to Digeridoo and really started feeling better around the 18 month timeline as well. Lower stress lifestyle, lots of excercise, very natural diet, lots of time outside in the sun. Definitely not something that would cure everyone, but just pointing out some common threads. Maybe it can work for others.