Will I ever recover from this? I destroyed the only life I have

Member Stories
#1

Where are you from? United States

How did you find this forum? Through another forum

What is your current age, height, weight? 18, 5’9, 165 lbs

What specific drug did you use? Accutane

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 30mg a day, for about 3-4 months

What condition was being treated with the drug? Acne

For how long did you take the drug? 3-4 months

How old were you, and WHEN (date) did you start the drug? I started at 17, about 5 months ago

How old were you when you quit, and WHEN (date) did you quit? I quit it a month ago

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

How long into your usage did you notice the onset of side effects? About 2 months in

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
[X] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfulness
[X] 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
[X] Suicidal Thoughts

Physical
[X] 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)
[X] Muscle Wastage
[X] Muscle Weakness
[X] 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)
[X] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)
[X] Eye floaters, and vision problems.

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

I take vyvanse (lisdexamfetamine, which metabolizes into amphetamine and has a very powerful effect on dopamine system) daily. My insurance was cut off recently, and I have less than a month supply left of it. I was able to control brain fog, forgetfulness, and lack of concentration with it

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 have only taken free testesterone test, which came back at 6.7 ng/dl, which is extremely low

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

Accutane completely destroyed my life. I feel discouraged reading some of the stories here, and realizing this most likely is permanent. I destroyed the only life I had, just as I was starting it and going off to college. I am very desperate for a way to get back my normal self, and that’s why I made an account here.

1 Like
The only thing that helped me was Vyvanse/Adderall
#2

The majority of this forum has some bad issues and suffer on it but go to work, go to the gym and life something like a normal live. Extreme severe and totally bedridden cases are the minority. Many users recover to a better level. Some have a full recovery in the first months.

4 Likes
#3

I was bedridden in the last month of accutane treatment. I had to drop a lot of university classes, and almost lost my scholarship. I wouldn’t wish that level of anhedonia and depression even to my enemy…

2 Likes
#4

@MuchHigher, welcome to the forum! First of all, I’m really sorry this happened to you, and that it’s disrupting your studies. There’s never a good time to be hit with this stuff.

A lot of people seem to get better in the first few months, like @Exsexgod said, so try to take good care of yourself and let your body heal on its own. I think reducing stress as much as possible is a good idea – this means trying not to think that this is a life sentence (that’s a very stressful thought!).

6.7 ng/dl is indeed very low (if I remember the T reference ranges correctly). I’m not sure if it’s a good idea to try to correct it right away, though. Hormones are really complex, and since you’re so young, it’s possible that your system will go back to normal with time.

If it’s any comfort, doctors don’t really know what to do with this disease (yet!)

2 Likes
#5

I am 18, and I took accutane (20mg/daily) for about 3-4 months. I started noticing a lot of symptoms described on this forum - zero sexual drive, weak erections, eye blurriness, eye floaters, muscle pain, reduced energy, zero motivation, terrible brain fog, bad memory, inability to feel happy, etc.

I have been off it for about one month now, and it did get a bit better. I still have a long journey ahead of me though.

The only thing that helps me right now, and lets me live a normal life is vyvanse that I got prescribed for ADHD. It’s a lisdexamfetamine which metabolizes into amphetamine in your body, and has an extremely powerful effect on dopamine system. It basically makes me feel human for few hours.

I know that taking it is not the best thing, and eventually I am planning on getting off it. I just lost my medical insurance, so I have just a month supply left - then back to depression, brain fog, no memory, etc.

Just wanted to share my experience. Is there a better way of managing my post-accutane syndrome? Ty in advance. I am new to this forum, so I appreciate any advice you can give to me!

1 Like
#6

It’s so really heartbreaking if you talk of the only life I have. Yeah so if there was any chance to live through the past and make the big mistake undone.

If there was the thought of becoming suddenly anxious of taking the drug, by reading the package leaflet and asking them self hey all this side effects are only temporary?!

And there are only some weak advices of persisting effects after quitting. And I fool thought Ok it persists for some weeks and than everything is alright again. With the big warning for pregnant women, you could have ask your self can this be good for me.

The same with the Finasteride leaflet. It can deformed male embryos genitals. And I fool never asked myself can that be good for my genitals.

And I want to roll back the time and be s lot more critical. And than live on with baldness, acne or enlarged prostate.

The leaflets have to become a big notice about possible long lasting side effects.

3 Likes
#7

I’m so sad I have did this to myself. Every day wake up with my weak and painful penis and heart knowing I did it to myself. The nightmare continues every day though… They say people get better quickly often but it’s been 5 months for me and the pain in penis continues… And my penis feel hard and tense. I think the tissue changes to fibers by now… There is no reverse. Dr here does not listen and said the pain is in my head and stress cause the penis to dysfunction… They don’t know anything

1 Like
#9

what’s good MuchHigher,

Welcome to the forum first of all. Listen, I know how you are feeling right now. I took accutane when I was 15 and had similar sides to you. Go read my posts for more information if you like. I’m 21 now and have nearly recovered from what accutane did to me 6 years ago. Trust me when I tell you that it will get better my friend. You owe it to yourself to be the best you can be through these hard times. We’ve all been there and yes it is tuff in the beginning, but as long as you focus on the essentials (Diet, Exercise, and self-improvement), you will start to regain your strength. Also be cautious with any “cures” you see on here, take calculated steps and see what works for you. I know you have it in you…and if you can make it through this you can make it through anything.

All the best,

Daytona

4 Likes