My story/33/accutane


#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)?

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 acutane long term effects

What is your current age, height, weight?

32/5.9/140

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

accutane

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

i cant recall

What condition was being treated with the drug?

zits

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

a couple months i think i cant remember

How old were you, and WHEN (date) did you start the drug?

14 or 15

How old were you when you quit, and WHEN (date) did you quit?

15

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

cold turkey

How long into your usage did you notice the onset of side effects?

a month

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
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[ x] 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
Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts

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

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

[x ] Other (please explain)

DEREALIZATION/ VISUAL SNOW/ EITHER TOO HOT OR TOO COLD/ SEVERE DRUG, SUBSTANCE SENSITIVITY

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

been on ton of meds over the years

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)?

very low T confimed waiting on more results

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.

ill keep it brief. i took accutane cause i had bad zits as a kid. a month or so into my treatment i developed horrible depression (which i had never felt before) and derealization where everything seemed unreal and was so horrifying that i quit cold turkey.

that was almost 20 years ago and my condition has deteriorated to the point i can no longer function or really take care of myself half the time. i cant eat anything wiithout spiking my symptoms. i am almost skin and bone yet still have constant bloating and GI issues. have always had issues with libido and keeping it going. it comes in waves and i have slept with my fair share of chicks but i have zero confidence at this point. cant hold a relationship because my brain is so warped from this. mood swings, derealization, depression, feelings i cant even describe. all waxing and waining over the years but it is indeed getting worse and i fear i wont be able to take this much longer i have been though so much hell i cant even begin to describe.

i do accomplish things (play in some bands, work at a record shop once a week, try to be social) but im never really fully here even on my good days. and all progress is short lived. anything that brings me relief (taurine being the latest) is always over ridden by this horrible condition. i get a window into normalcy then poof its gone. its heart breaking.

i dont know what love is. i have an idea but i am so blunted and warped i just cant feel anything. a warm breeze, the closeness i used to feel with certain people, the things that mattered to me. its all just been robbed or severely altered. reading all these stories my heart truly goes out to you all. i feel like im doomed

i want to feel life, i want bang chicks, i want to truly love someone, i want to love myself. but i cant. i am a damaged individual who desperately needs a break. its like my mind and body are punishing me. i seriously cant take much more of this as i waste away. this truly is hell and i want OUT


#2

Also accutane here, 22 years old I feel your pain. You’ve experienced this for 10+ years ?


#3

to varying degrees. its seems to have been active for a while but the past fews years are remarkably worse. its a progressive condition


#4

As of right now what’re you worst symptoms ? What has been the thing you find more relief with?


#5

Hello Hippydoof and first and foremost a warm welcome to the forum :blush:

Your story was truly heartbreaking to read as I feel your pain, from visual snow to bloating to not knowing who you are anymore, not knowing what love is to your brain just feeling warped from everything, I’ve been to hell and back myself in the space of a year with physical changes to my skin and how my body repairs itself, along with a ton of other stuff, but i couldn’t imagine over 20 years and I know there are a few others here who have been suffering that amount of time too.

This conditions so varied among everyone, I hope the studies being conducted she’d some light on what’s wrong with us, better yet allow us all to be acknowledged by the medical community, if there’s one thing you’ll feel at home here, we’re all in a very similar situation and are all hanging on, there is hope my friend we just need to fight a little longer, you’ve fought so far already, you must be an insanely strong guy!

If you need to talk I’m always around, feel free to PM me.


#6

Thanks for sharing your experience @hippydoof.

20 years of this post-Accutane life is an excruciating punishment that no one deserves. I am in the same situation, having dealt with a progressively worsening blunted/soulless state of mind and deteriorating sexual function for the past 20 years of my life. This has caused psychological damage after hoping and working towards something better for so long.

Please try to hang in there. You made it through 20 years, so a few more should be manageable. There will likely be a brighter future for us, gained through understanding of this condition.


#7

oops saw i already replied. that memory again!


#8

thank you devolution and likewise im always here for anyone to PM. it really is hell just trying to get through day to day. the physical and mental grappling. fuck i just want a minute to relax


#9

i will continue to hang and fight thank you dubya-b


#10

worst symptoms are derealization, GI bloating, head pressure and cognition at the moment. it is always changing day to day sometimes within the day. clonazepam def helps but i use it sparingly/ maybe 5 times a month max. magnesium and zinc are forever for me they do help. not much else brings relief. things have lifted it at times but it always returns with a vengeance

edit*

an update to whats been going on with me

taurine definitely improves cognition but after a few days it increases my derealization and visual snow/hppd symptoms. it also numbs my penis even more. must be the gabba because clonazepam does the same. ive started and stopped it twice now. the first couple days on it are great. my libido is stronger and the first day of the second time back on i had probably the best wank ive had in years. despite the fact i didnt have as much sensation as i normally do it was like i was more in touch if you pardon the pun. but after a few days on it my DR increases and my wang becomes much more numb. ive been off for a few days now. also i take very small doses. like half or 1.5/4 of a 500mg capsule. im very sensative to all substances i put in my body. i suggest everyone give it a shot tho maybe you will react better than i did. its not a placebo effect.

i had a girl over last night and we ended up fooling around. for most of it i had a rubbery half inflated wang but luckily got hard for when it really counted. i definitely felt more out of touch with my sexuality tho. back to where is usually am. its still animalistic but its forced and i think it shows that im not all there in those moments. im wary of sexual experiences but ultimitley just have to let them be what its going to be i dont want to deny myself. i have explained to past partners that i have issues sometimes and to not think its them. most people are understanding.

my memory is the WORST its ever been right now. i was on a date a couple days ago (with the same girl) and i literally couldnt remember anything she had told me when we met up next. its really really bad right now holy hell.

i think i crashed off something. i have been extremely fatigued and irritable. more so than usual. i recently started ashwaganda again and i wonder if that triggered it? or maybe the taurine. but man im wiped all the time. coupled with the crappy weather i dont see myself leaving the house much this winter.

my internal temperature is always hot lately. even when its - 5 out i smoke on my porch in my boxers and can barely feel the cold. my face is red all the time i dunno wtf is happening but this seems to come and go.

i really wish i could just be stable. its the constant rollercoaster of symptoms, trying out supps and different states of being that are really damaging. its like im not even the same person from one month to the next. sometimes one day to the next.

my skin feels like its tightened up a bit. or maybe im noticing it less. everyday = new struggle

i ordered some pine pollen and will document my experience with it when it arrives

next i will try histidine

keep fighting!


#11

This isn’t medical advice. But be careful with zinc. Some members have experienced problems with it. I don’t know the science, unfortunately - but watch out.


#12

By the way - we big time need your help with a study we’re running.

It’s to see whether there’s a link in the genes of Accutane, Propecia, SSRI users here.

If you could take a 23AndMe test - that would really help - and upload as per here…

It’s mega easy…

We are trying to get to 50 sets of gene data. We are close, at about 45 - but need five more so we can have our first analytic run.


#13

I have a 23 and me account I’ll pm you the results


#14

Mines in the mail :slight_smile:


#15

@hippydoof - great you’ve done it already - best upload it via the link in the blog :slight_smile: