2 years in... Starting to feel better

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)? United Kingdom

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? 32, 6ft, 160lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride. Used saw palmetto beforehand but no side affects
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg usually every other day

What condition was being treated with the drug? Hair maintenance, regrow this

For how long did you take the drug (weeks/months/years)? Around 4 years , 3 months

How old were you, and WHEN (date) did you start the drug?
Started at 28, April 2015
How old were you when you quit, and WHEN (date) did you quit?
Last pill taken on September 11 2019
How did you quit (cold turkey or taper off)? Tapered off

How long into your usage did you notice the onset of side effects? Around 3 - 3 1/2 years

What side effects did you experience that have yet to resolve since discontinuation? Severe insomnia, lack of pleasure, yoyo libido , a feeling of emptiness and …’nothing’. Soft erections, uninlateral gynecomastia, tinnitus

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

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

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] 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? It has got so bad that I’m quitting job and planning a period of ‘recharge’ where I am
To combat this.
Till then I take 3mg of lunesta every night for sleep (get about 5 hours on average), also using some L arginine, occasional inositol.
I also exercise and have noticed a bit improvement when I do cardio.

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)?
My psychiatrist had my back and believed that something physical was wrong when the GP doctor just thinks it’s all in your head. My psychiatrist ordered blood work and I came back with high calcium levels, testosterone was ok at 468, prolactin was in the normal range.
Anything not listed in the above questions you’d like to share about your experience?
The real horrifying thing has been the insomnia plus the lack of creativity and feelings of nothing . I am a songwriter at heart and thrives on using my emotions and feelings as fuel for creativity now I have nothing. It’s the worst thing you can think of really. Physical things the sleep problems are the worst, followed by the Uni lateral gynecomastia , then the erections / sex drive etc
The gynecomastia fucking hurts…I tie that in to how bad the syndrome is . When the nipple starts hurting is when I feel I’m back at square one as a 32 year old fit and healthy (otherwise) man shouldn’t be growing a fucking left breast. When the pain starts coming is when I notice the sex drive and libido drops too. Sleep has improved a little the last 2 weeks

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

1 Like
Update - just over 2 years in and continuing to improve
#2

Hi @Forwardsnotbackwards and welcome to our community. I’m so sorry to read your story, the side effects you speak of are all too familiar to so many of use here. Thank you for making your member story.

The next thing to do is to read this thread

The most helpful thing you can do in the immediate term is to fill out our Patient Survey.

The data generated will help to characterize the condition(s) that have come to be known as PFS, PAS and PSSD, along with several other persistent syndromes resulting from various substances

The survey can be accessed through the bar-graph icon at the top of your screen after you have posted a member story, and remember, the survey can be halted at any time and continued at a later time/date.

2 Likes
#3

Thanks for the info and the introductory support . I appreciate you getting in touch . Yes times have been tough and I’m approaching the 3 month mark since discontinuation. I still have hope things will get better , I know there is a long road ahead…Life is hard enough for healthy individuals out there - yet us people with PFS feel like life has almost put us back at square minus one,

2 Likes
#4

Just thought I’d update for anyone who’s interested.
Last pill was on September 10th 2019.

Since the summer things have been improving ten fold for me. I wanted to wait a while before I posted …as PFS can be very episodic but enough time has passed now where I truly see myself out of the darkness and hell I was in .

Of course , not 100%… but sometimes I think nostalgia and reflections of how we were once are often ‘screen memories’ anyway, I have to ask myself even before a prescription medication messed me up was I truly ever operating at 100% anyway? Most likely not.

So , this is controversial perhaps but I have to say Mirtazapine has been the biggest factor in me improving. Within 2 weeks of use it seemed to reset sleep for me. I now get 6-7 hours each night with less awakening then I have ever had in my life.
Slight weight gain (went from 11st to 12st) but aside from that no issues.

I’m on 7 -8 months of using that now and I think also time has helped, as well as finally getting sleep to restore things.
I also have not stopped exercising the whole time . A mix of cardio and resistance.
Although I feel the cardio has probably reset me more , my body has put on muscle from the resistance. Psychologically this helps, as a changing body indicated to me that things inside me are being reset and finally working as they should .
I have also prayed a lot and focused on quiet time, reflections daily . Spirituality can help the mental sides too.

As all this has been going on the tinnitus has decreased in volume , it’s still there unfortunately but I can live with it being quiet.
Libido and erections have improved markedly, although they still can be soft , I’ve had moments where it’s back to its best with full morning wood, pleasureful orgasms.

Gone are those times of pleasureless orgasm and a wispy little ejaculate would come out . That was bloody awful. I feel ready to seek a relationship with a woman , and although I’m not 100% I think my current state is good to go.

Hopefully now after posting this I won’t relapse ! :sweat_smile: but I don’t really believe in tempting fate anyways, I prayed to be delivered from this hell and I pray the same for all of you people , who have helped me so much over the past 2+ years. If this post gives you a small piece of hope then I’m happy .
My suggestions are keep going no matter what, believe that there is a day you will feel not cured but just ‘better’ . Use minimal medications , focus on exercise and hobbies/passions if possible, I’m sure this helps rewire some of the messed up dopamine signaling , step by step.

5 Likes
#5

:star_struck: :star_struck: :star_struck: :star_struck: recover story！

#6

Did Mirtazapine also help for your libido?

#7

Well I’m not sure about recovery …but it’s an ….’I feel a lot better’ story ! :sweat_smile::sweat_smile:
I hope you will too :pray:

2 Likes
#8

It definitely didn’t do anything detrimental to the libido. Mind was clearer from actually sleeping more than 2 hours, I think sleep, exercise plus time helped the libido most . As well as slowly increasing hobbies and passion again , which was the first time I noticed small spikes of ‘pleasure’ again. I’m a musician so it was doing this like recordings, writing music , performing etc which I’m sure has helped the dopamine signaling…over time

1 Like
#9

This is great news! Thank you for coming back to report it!

(I merged the thread with your original story so people can understand the full context of your journey, and changed the topic to reflect your new state).

It seems like a lot of the checkboxes are empty in the first post. What symptoms do/did you have @Forwardsnotbackwards ?

#10

Yeah I remember I wasn’t sure how to tick those !

So at the time of filling the initial member story I had:

-Severe Insomnia (0-2 hours every night )

-Tinnitus (like a high pitched electric pulse crossed with a ‘whoosh’ sound)

-unilateral Gynecomastia (just left side)

-Anhedonia

-Anxiety/tremors

-pleasureless orgasms

  • soft erections

  • low libido

-nocturia

#11

Please be careful with Mirtazapin! There are cases here and on other forums who have developed PSSD symptoms after taking Mirtazapin! Even Mike on Mitch’s YouTube Video podcast was really hit to the worst state by Mirtazapin.

1 Like
#12

Mirtaz hurt me too and brought new sides which remain today

#13

I appreciate you guys reaching out and your concern but I was in such a bad way I had to try something , and it’s been 8 months or so now on Mirtazapine with no sides (slight weight but nothing major)

Mirtazapine isn’t a Selective Serotonin Reuptake inhibitor so it shouldn’t cause PSSD anyhow .

#14

Good luck with it long may it last lots of us get the desperation and the need to try something which is what is what ends up burning many. Nice to see a positive for a change

1 Like
#15

Mirtazapine can fuck your life totally. Its cause PSSD!!!
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#16

All antidepressants can cause withdrawals and different side effects .

How can a drug that doesn’t even affect Serotonin levels (Mirtazapine affects histamine and adregenic receptors) cause post selective serotonin disorder ? I mean where is the scientific proof ?

Anyhow I’m not here to argue about an antidepressant or not, I tried it with extreme caution and Im now 8 months in and doing loads better. That’s my story and I shared an update to help others who were in a dark place too. It’s not all Mirtazapine , mirtazapine reset the sleep and from getting sleep I was able to restore a bunch of positive physical and mental components of my life that’s it .

#17

Thank you! We have talked a lot on here over the past 2 years , you know how bad things have been for me at times…I just shared this to give some positivity back

1 Like
#18

Where is the proof finasteride cause pfs???
Where is it???
You are the proof. Just thinking a bit man.

1 Like
#20

What do you mean @bsvc ?

#21

How is your libido now?