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 (Canada)?
How did you find this forum (Accutane Long Term Side Effects Facebook Group?)
What is your current age, height, weight? Age 44, Hight 5’6", 120 lbs
What specific drug did you use (Accutane)?
What dose did you take (Have no idea and doctor chucked out my records)?
What condition was being treated with the drug? Acne
For how long did you take the drug (weeks/months/years)? Was off and on it 4 times during the space of 5 years
How old were you, and WHEN (date) did you start the drug? About 17
How old were you when you quit, and WHEN (date) did you quit? About 22
How did you quit (cold turkey or taper off) cold turkey
How long into your usage did you notice the onset of side effects? 17, however I was not warned of any such side effects so had no idea accutane was causing them.
What side effects did you experience that have yet to resolve since discontinuation? NO sex drive and brain feels staticky, depression, anxiety, loss of pleasure, excessive sweating, excessive body hair, yellow skin around face, extremely dry eyes and skin, not happy in life, no relationships. Made me hallucinate when I was on it and for many years afterwards.
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
[yes] Loss of Libido / Sex Drive
[n/a ] Erectile Dysfunction
[n/a] Complete Impotence
[n/a] Loss of Morning Erections
[n/a] Loss of Spontaneous Erections
[n/a] Loss of Nocturnal Erections
[n/a] Watery Ejaculate
[n/a] Reduced Ejaculate
[n/a] Inability or Difficulty to Ejaculate / Orgasm
[n/a] Reduced Sperm Count / Motility
Mental
[yes] Emotional Blunting / Emotionally Flat
[yes] Difficulty Focusing / Concentrating
[yes] Confusion
[no] Memory Loss / Forgetfulness
[no] Stumbling over Words / Losing Train of Thought
[no] Slurring of Speech
[yes] Lack of Motivation / Feeling Passive / Complacency
[yes] Extreme Anxiety / Panic Attacks
[yes] Severe Depression / Melancholy
[yes] 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
[no] Weight Gain
[ ] Gynecomastia (male breasts)
[no] Muscle Wastage
[yes] Muscle Weakness
[yes, now have it] Joint Pain
[no] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[yes] Persistent Fatigue / Exhaustion
[no] Stomach Pains / Digestion Problems
[no] Constipation / “Poo Pellets”
[yes] Vision - Acuity Decrease / Blurriness
[yes, staticky noise in ears and slightly flickering vision] Tinnitus (ringing or high pitched sound in ears)
[no] Hearing loss
[yes] Increased hair loss
[no] Frequent urination
[not sure] Lowered body temperature
[ ] Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? No one has helped me, many were happy to take my money but no one helped, some made me much worse, such as iron supplements.
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. Started the drug around age 17, started having severe anxiety and loss of pleasure in life, also my brain felt “staticky”, started to think others knew my thoughts. At age 19 started having severe hallucinations (auditory, visual, tactile, olfactory). The same family doctor that had me on accutane then put me on zoloft. She saw me during her lunch break at the request of my mother and diagnosed me with “psychotic depression”. She put me on zoloft and told me it has no side effects. I didn’t want it, I thought I had mental telepathy so didn’t understand how it would help me but I took it anyway. After a week I developed muscle twitches and nightmares. I took myself off the zoloft cold turkey after about 6 weeks. The nightmares persisted for 3 years and the muscle twitches for 8. The doctor still had me off and on accutane. A bishop at church told me I brought this upon myself because apparently I must have sinned and told me if I repented it would go away. He kept talking about satan. After conversing with him I started to think I was possessed and the voices turned into “evil spirits”. The nightmares and muscle twitches were in my mind caused by the “evil spirits” too, was like they were possessing my body and pressing buttons, putting pains into me or making my muscle twitches. I had nothing but nightmares from the time I went to bed until the time I woke up for 3 years.
After years of emotional torture I was diagnosed with schizophrenia and put on olanzapine, which had severe side effects and then I was switched to Seroquel. After 3 years of not getting better and doctors at the hospital using me for their study and not caring about me but rather caring more about the study and making the drugs look like they were helping me, I finally took myself off. Tapered down for a month and felt extremely agitated and unwell but then after 3 days ate a chocolate (must have been the magnesium) and felt back to “normal”. The doctor in charge of me screamed at me when he found out I quit, because it was just shy of the 3 years he needed to study me for his study. I stayed away from doctors and their drugs and listened to alternative health experts beginning with mercola. My brain felt much clearer after getting off the antispychotics but took years to slowly heal. My brain still feels staticky and inflammed and I haven’t felt very happy. Been very depressed and had anxiety and think about ending it all. Feel cranky most days and easily frustrated with little patience. I have no functional sex drive. Do not enjoy sex at all and find it impossible to date or have a relationship. And am very upset at my loss of sexuality. I’ve never really had much of a sex drive most of my life. I spent many years listening to health summits and trying this and that and every supplement I heard of that I thought might help but found very little. I tried fasting for 7 days but I think all that did was stir up the mercury from my fat cells (from having mercury fillings from age 10 until my early 20’s). I have had mid back muscle fatigue for 10 years and low back pain for about 5 years. I figured out my mid back muscle fatigue is tied to not having enough bioavailable copper for my muscles. I also have arthritis in my fingers off and on but do borax and that might be helping. Really the only thing left I feel somewhat hopeful about trying is a stem cell treatment or exosomes. I am 44 years old now.