My Roaccutane/isotretinoin story

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)? UK

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? 50, 12.5 stone, 6 ft

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Don’t know
What condition was being treated with the drug?
Cystic acne
For how long did you take the drug (weeks/months/years)?
Two courses, not sure how long - months not years
How old were you, and WHEN (date) did you start the drug?
18 (1987)
How old were you when you quit, and WHEN (date) did you quit?
18 (1987)
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Three months after stopping.
What side effects did you experience that have yet to resolve since discontinuation?
Changes in brain. Distorted cognition. Anxiety. Depression.
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.

[ ] 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

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

[ ] 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

[ ] 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?
Psychotherapy, numerous alternative therapies, numerous diets, SSRI’s, loitering desperately in health food shops, wondering what pill might return me to myself.
Only things that have effect are anti-inflammatory herbs, especially bromelain, breathing techniques (especially Middendorf), chanting. I believe there is some effect on the vagus nerve from these, and I have the strong sense that there is a connection between what’s happening in my brain and what’s happening in my gut. Chanting is the most interesting thing - it can “fix” me for hours afterwards.

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)?

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.

My brain changed. Came on quite suddenly. Things started happening in the flow of my consciousness. Distortions. Nothing delusional, but what I call a glitch in normal functioning. It is as though ordinary thoughts and perceptions provoke a kind of agonised electrical pulse in my brain stem. For no reason. There’s nothing threatening about them. A kind of snagging. Using my brain becomes difficult and painful. I have very little other emotion. My life has become this “thing” in my brain. I am constantly on edge and mentally fragile and confused. I live from spasm to spasm. It’s hell. Self-absorbed. Everything has suffered as a result - work and relationships. Isolated and shut off. Ever seen the film Jacob’s Ladder?

Never come across anybody describing anything similar, other than people saying they felt their brains had changed after Accutane.

Never found a doctor who recognised what I was describing.

Perhaps one of the worst things is asking myself, what? or who? am I? What have I become if a drug has shifted my personality so drastically?

For the first 15 years (!) I had a strong sense of unreality. That’s the one thing that has gone. There have been times where I’ve managed to calm the symptoms enough to lead a reasonably normal life, and these have been interspersed with crises where I feel to too sick to carry on as normal.

The only other thing that might ring a bell for someone somewhere: Bimuno - a prebiotic fibre to feed good bugs in the colon, and reported to be a good for depression. When I took it, my symptoms got much worse very quickly (within hours) and improved when I stopped. I repeated the experiment some months later, with the same results. I have considered this to be evidence of SIBO, but have not had this tested.

It’s funny, the only forum-ish sites I use are these Accutane ones, and… dating sites. Maybe I should write some of this stuff on the dating sites and see where it gets me.

1 Like

Hi there johnniehaz and welcome to the forum. I’m sorry to read that you’ve been suffering for so long, in fact for all of your adult life. Thanks also for sharing your story with us. Hopefully this well be helpful for others who have experienced the same. 5ar inhibitors can definitely have profound and disabling effects on brain function. It’s really good to have post accutane victims joining us here as collectively we are stronger and this can’t but help the push for answers and visibility.

On a personal note your story stuck home. I was 14 in 1987 and I’m now 45. It brought me back to that time in my twenties in the late 90s when I unknowingly took propecia and the gulf of years since then that it has impacted. You are a reminder of the many out there who quietly suffer from having taken approved prescription drugs. I’m glad that you have joined this collective push to resolve this as I believe that momentum is building and that there is light at the end of all of our tunnels, no matter how long they have been.

1 Like

I’m so sorry to hear both of you have been dealing with this stuff for so long.

As @Scotsman says, momentum is building, if you can @johnniehaz, please suggest that people on the accutane forums you’ve used join us here. We can be more effective as a group - that means sharing advice, supporting each other and funding studies to research the science that’ll get us out of this mess.