My Awful Experience with Accutane

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    dubya_b
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    It has been over 15 years since I first began experiencing side effects from Accutane. Specific dates aren’t quite clear to me any longer. I can only remember certain events happening and have a general idea of around when they occurred. For instance, I remember taking red and yellowish pills in blister packs for a long first course and very brief second course, so I’m assuming this corresponds to a 20mg(red) first course and 40mg(yellow-orange) second course. At the time it was first prescribed to me, Accutane was made out to be nothing more than a harmless pimple pill. The strong warnings, lawsuits, and huge controversy hadn’t quite become common knowledge yet. The blame for most of my side effects was placed on such ridiculous things as STDs, before I ever had a sexual experience, Lymes Disease, someone poisoning me, bad Karma/Chi, carbon monoxide from a leaky exhaust, the end of puberty leading to impotence and feeling like a sick and elderly person, ect. You name nearly any crackpot theory, and I have briefly entertianed the notion that it is what caused my symptoms because they were never mentioned to me as potential side-effects of Accutane. Looking back, this was quite foolish to not make the connection since my acne finally started clearing-up the same week the worst of the side effects hit, but at the time, I had never heard of a drug taking effect weeks after you quit taking it.

    I jumped on the chance to take Accutane for moderate acne after it was offered as an option, and after trying nothing more than benzoil peroxide and face washes previously. It ruined my life and I often regret that my life didn’t end before the worst of the side effects kicked in. This statment isn’t meant to be dramatic or intentionally depressing to anyone else, but that is my personal viewpoint. I do not want to live out the remainder of my life in the condition I have been in for the past 15 years, and only hang on for the hope that the persistent effects Accutane caused can be reversed or mitigated somehow. If there was a theoretical treatment with a 90% success rate and 50% chance of causing cancer, I would take the chance just for the sake of feeling good again before I die. I’ve already accepted mortality. I also believe the only rational way to achieve any sort of reliable treatment is through scientific investigation into what exactly has gone wrong with us, which is why I have become so involved in pushing for research and became involved in helping with this site.

    Let’s quit playing around with the same old methods of trying to beat this that have not worked in the past 30 years since Accutane went onto the market, it’s insane.

    A timeline of my experience with Accutane side effects:

    Late Spring 1998: Was scheduled for a psychologist visit after being suspended from a few days of school. Basicaly complained to him about not being the most popular and awesome person who ever lived, typical teenager point of view, and said something like “maybe it’s because I have acne” when asked why I felt that way.
    This is when I was first told about the miracle of Accutane after uttering the most regrettable phrase of my life.
    So, trying to increase my number of friends and chances with women by attempting to rid myself of a cosmetic flaw that was mildly disturbing to me destroyed my enjoyment of being social and my sex life permanently.

    Late July 1998: Took a day off from my Summer job to get a quick and easy prescription for Accutane from an MD for moderate acne before any other prescription treatments were tried. No real warning of side effects except dry skin.

    Mid August 1998: My first day home alone after my summer job ended, I decided it would be a good time to pleasure myself. For the first time since I leaned how to, I was not able to get it up a second time and didn’t have much desire to. It wasn’t alarming in itself, but I found it to be odd. I also noticed feeling a bit strange during the month of August. Not “sick” really, but just “different,” as if I wasn’t quite myself.

    Sept 1998: I began experiencing mild bouts of what I think are hot flashes (a feeling of being overheated, as if I was dehydrated. I also describe this as feeling like I drank a shot of whiskey (a hot feeling in my face and torso)). I also noticed a decrease in the frequency of nocturnal emissions and spontaneous erections, mild depression, and a mild decrease in sex drive. I could still become aroused from visual stimuli or sexual thoughts though. My hair became much less oily, but acne was just as bad as ever. At the time I still did not feel that I had any health problems.

    Fall 1998: The symptoms that began over Summer continued and I noticed I was no longer feeling much excitement over anything and felt downright depressed. This lead to a prescription for Wellbutrin, which didn’t help at all. Also started sleeping in late for school and started taking showers before bed since I often had trouble waking up and getting myself out of bed early enough in the morning. My course of Accutane ended that Winter and my acne didn’t improve much, if at all.

    Spring-Summer 1999: The depression and low libido started letting-up gradually over Spring of 1999. By Summer, I was feeling like my old self again, but was prescribed another course of Accutane since the first didn’t do much. I remember popping open the blister packs in Late July and feeling the same way I did when taking Accutane the year before for the majority of the month. I can’t remember exactly how long the 2nd course lasted, but am sure I had taken my last pill by Aug 15th. I think I quit taking them because I didn’t see the point in taking a pill that wasn’t doing anything. I still thought the strange symptoms were simply something that was “just happening.”

    Aug 15th – crash: I remember being furiously horny on many occassions during this time. I also had erections lasting a few hours and seriously considered going to the hospital at one point after hearing one of the Viagra commercials warning about priapisms. I also felt better all around than I had before in my life. Limitless energy. I was only getting a few hours of sleep a night, was working two jobs, and never tired. My mood could almost be described as manic. I felt like Superman, and it was unnatural. This lasted up until crashing.

    My Crash: Late Sept 1999: I literally became a different person overnight. Around 1 1/2 months after I took my last pill I experienced my first panic attack while driving to a party. My foot was shaking on the gas pedal the entire way there. I had felt a little odd that day, but had no clue what was happening to me.
    I arrived there and realized I had no interest in talking with, listening to, or gawking at any of the girls there. Had no desire to be social with anyone actually. I couldn’t “feel” the music that was playing the way I should and couldn’t crack a smile if my life depended on it. Pretty much sat around staring at the camp fire. I took it easy on the beers since I thought I was just getting sick, probably only had 2-3 drinks and left early. I made it to my room and laid down to “take care of business” the way I had thousands of times before without problems. Thought it would help me relax and get me out of the downer mood. I got started and within probably 10 seconds realized something was wrong. For the first time in my life I couldn’t get it up. Maybe chubbed-up a little, but any other time I did it I would be rock hard within a few seconds, it would feel great, and it would inflate like a balloon. Not only could I not get it up, but it didn’t feel much more pleasurable than rubbing my thumb and I couldn’t hold on to sexual thoughts.

    I don’t remember whether I finished or not, (I think I just gave up and tried going to sleep). I went to sleep around 1:00 AM and woke up in the middle of the night shaking and covered in sweat. No erection then either, which was also odd for me in the middle of the night. I took my temperature because I thought I may have been coming down with the flu and it was normal. I woke up the next morning feeling sore and extremely tired and depressed. Had a half-chub of a morning erection that started going away as soon as I stood up, which was the first time since puberty I wasn’t rock-hard for at least 5 min after waking up. Felt tired and depressed all morning.

    I went from feeling pretty normal, maybe a little too good even, to having full-blown permanent symptoms within less than 24 Hours. Anxiety, loss of libido, and flat emotions all occurred within a few hours of each other. I have not felt healthy in general nor have I regained normal sexual function since that moment. I’ll never forget it unfortunately. The night sweats let-up after a few weeks, but other symptoms continued at that same level for the next few months. Over the few weeks following my crash, I developed depersonalization, my acne mostly cleared up, and it felt like someone was beating the shit out of me in my sleep I was so sore when I woke up. There were days when I thought about wrapping my car around a phone pole or tree on my way to work, but held on because I never thought it would have lasted indefinitely. I ended up dropping out of school over it and only made it through short work days by forcing myself to. I was too ashamed to flat-out say I was impotent, but told my father I was “afraid I wouldn’t be able to have kids anymore” and mentioned feeling horrible in general. I don’t think he quite understood, but scheduled me for a doctor visit and left it at that.

    Nov 1999: I was told that I had pre-hypertension during a physical. I did not mention any sexual or mental symptoms to the doctor. I was incredibly embarrassed by the sexual symptoms, and didn’t want to hear bad news in case it was a terminal condition. A wasted trip more or less.

    Spring 2000: I began having occasional morning erections, and depression and lethargy became less severe. I began experiencing some emotion again as opposed to feeling like a complete robot during the previous winter. Acne returned a little but never as bad as it was before. I felt I was in good enough shape to attempt to hookup with one of the girls I hung out with, but was still suffering from mild erectile dysfunction roughly 1/3 of the time and failure to orgasm during sex occasionally. She sensed there was something wrong after the 2nd or 3rd time. I almost called it quits with her, but was assuming my symptoms would continue to improve. The ED and failure to orgasm have gradually become more severe over time. Emotional blunting gets better or worse from time to time, but I never feel like my old self or like a normal young person should feel.

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