22 years old Post Accutane Syndrome (maybe there is hope?)

Hello guys. I wish all of you health and luck on this path. I apologize from the beginning about my English, it’s not my first language.

I searched and found out propecia, antidepresants and accutane can cause same problems in same(?) way. So i believe you will find too many common points in my story with yourself.

I want to talk about my whole story with every little detail because there are so many variables, i have changed my diet, my location, my relationships and mindset. Maybe i couldn’t see some relation between these differences but maybe you can detect it. If you don’t want to read everything i will give some summary at the last paragraph.

I had cystic acne since i hit puberty like when i was 14-15 years old. And at 17 i guess, i tried Roaccutane for just one week and i quitted bc of dryness of my skin. But after 3 years at age 20, i went to universtiy’s derm doctor and she said i need to be treated with accutane there is no way i can get rid of these rate of acnes. So i started accutane 2 years before. But i knew these drug effected me too much at first attempt (maybe this affection was normal but i was not tough enough to embrace it when i tried it first time) so i told that to doctor and she decided to treat me with lower doses and longer time period. So i took accutane for 11 months. Dosage was flexible. Some months i took 20 mg/day sometimes took 30mg/day and last month i took it 40mg/day.

About side effects, i started to realize my heart beats harder than usual at 2nd month of treatment. Not beating faster but just harder like my heart got tired and makes its all beats like its last strength. It was enough for shake (just enough for notice) my bed while i was trying to sleeping. Then i realized it gets worse after eating something. But i was too arrogant to think it could get worse. Besides that, i realized my sleeping duration decreased. I was just able to sleep 7-8 hours and wake up really tired. Before that i was able to sleep 10 hours non-stop and waking up energetic. Another point is was drinking alcohol like a sponge while on treatment. This alcohol problem may be the biggest worsening effect on my case.

And on the last month of treatment (11th month) i suddenly had incredible libido and unstoppable erections. I was completely normal with sex drive and libido before the last month but at the last month everything went crazy. This can be the main point it’s so important. At the same time i started to losing my hair and getting extra amount of hair on my back and shoulders and on even the areas i didn’t have hair before!

At first i didn’t think it can be something dangerous but i definitely realized that difference. I thought it’s not a big deal becuase i was preparing something else; something that could be the best part of my life: Erasmus.

Yes, thanks to my perfect luck at the exact time my treatment finished, i was going to go to Poland for erasmus programme. After two weeks my treatment finished nothing has changed. My libido and erections were perfect. I was on abroad, having sexual relationships, having fun, drinking non-stop and having zero responsibilities ever. BUT after just two weeks, something has happened. Like there is a button on my boddy and it just switched off. All libido and erections have gone. I felt like a robot. Girls i just hang out two days ago were like just some random life forms for me now. These hit me so hard. I stayed at dorm for a night and made a research about that and after i found out these side effects can be permanent and it’s because of accutane i felt devastated.

And just after one week of these hell another serious problem came up. Corona came to the Europe and almost every European country have closed their borders. So because of that i was not able to come back to my own country. At this moment; i had zero libido, impossible to maintain erections even with support of hand, watery cum and extreme effort for cumming, depression due to this situation and because of my erasmus life has been ruined bc of corona.

About what i was eating back then; i was just eating eggs, cheese, olives and a little bit rice (too little) and meat. And i was taking large amount of alcohol in dorm room every night! That was all of what i eat and the amounts of food were too little. Because i had no idea how to cook a food and every restaurant was closed. So besides all of these problems, i couldn’t feed myself good. My height is 190 cm and my weight was like 75-77kgs before going there but it has dropped to 62 kgs and i have lost almost all of my muscles. Plus, i started to have some mental effects. I certainly believe i became bipolar at this state. I had extreme mood changes. Sometimes i felt really happy for no reason. Sometimes i cried for hours like a baby it’s really weird because i am not a person like that. I broke my relationships with my friends for no reason because of these effects. They put a distance between us and that effected me even worse. But i was able to find a reliable friend at the end of erasmus and we had still some time until our visa expires.

So we decided to go on a little Europe trip. I was already exhausted and wasted but i thought this chance might have been the one and only in my life. So i pushed myself one more time. We visited several countries and while on that trip, we had to save some money for travelling and to staying. I remember we walked like 18 kms in one day and just eaten two hamburgers. And here is the potentially mistake i have done. Our next stop was Holland. We saved our most money for it because we were really wondering about weed and magic mushrooms. We got some weed and it didn’t effect me bad but then I tried some mid level magic mushrooms. Right now i consider myselfs as ‘‘lucky’’ because i still don’t know how did i manage to not fall into ‘‘bad trip’’ while on magic mushroooms despite that problems i have.

After two days at the morning, i felt like horrible dizzines, brain fog, muscle weaknesses. I still don’t know if these problems were results of magic mushroom or my bad life style. And this extra effects lasted for 3 months. Anyway at this point i had zero progress of healing both mentally and physically.

So let’s talk about what happened when i finally arrived to my home. After 6 months mixture of terrible problems, hard nights; good friendships and travelling world around i finally arrived to home. I want to say that, my mom cried when she saw me first time when we meet at airport. In 6 months, i lost 15 kgs and lost all of my muscles, got sunken eyes, even not able to walk holding my body straight, i was like a walking broken stick.

My healing progress started when i walked into my family home, i felt relaxed mentally. Thanks to my mom my nutrition got better and better. I started working out hard and i started to get back my muscles. Before talking about exercises and nutrition i want to talk about my lab results. I have checked my LH, FSH, Total and FreeTestosterone, Dopamine, mineral and vitamin values, cortizol levels and some other parameters that i don’t remember now but all results were perfect. Surprisingly my testosterone levels were almost at the top of the range. I will share my results when i free time. Doctor said you are the most healthy patient i have ever had. You should have perfect libido and sex drive with these results.

So that started everybody to think my problems are mental. That made me more depressive because i knew all of these are not just mental based problems. Doctors gave me some med called ‘‘LIFTA’’ and one antidepressant that i don’t remember it’s name. I didn’t use antidepressant more than 7 days because it made me fell like a robot more. Lifta has worked to increasing to blood flow of penis but it didn’t solve the numbness and libido problem. But then i found out this is about inhibitation of 5 ar enzyme and DHT. I went three doctors and all of them were professors and none of them checked my DHT levels. I went to hospital and said i want to check my DHT levels and the result was obvius. It was too under of the range. I had an appointment for talking with a doctor but due to corona all appointments have been cancelled.

At that moment i started to think i was alone in this journey. Because nobody knows anything about this diseases and the worst thing is nobody blames accutane for these effects. And the worst thing is my family chose tho believe to doctors instead of me. My mother insisted to starting a mental medication. I declined all of that and started to letting it go how it goes. At these days, when i tried to masturbate it all felt like i was applying a pressure onto my body. No orgasm, no pleasure, and cum was like mostly watery. I was not able to dream about ANYTHING. Not just about sex and girls, i was trying to dream myself walking on a path but i swear i couldn’t do it. It was impossible to me to creating any image on my mind. When i close my eyes there was nothing but darkness.

Then i did my best move in this journey and started to working out ultra disciplined. I manage to get 20 kg in 6 months and most of it muscles. I am now 85 kg and have approximately %12 body fat. So day by day, i realized my body gets stronger and my ED is healing slowly. Then i suddenly realised actually penis is a muscle too. So that means i have lost my penis muscles too. I needed to exercise my penis muscles with masturbating more. But that caused another problem. I became obsessed with masturbating. If i don’t wouldn’t do it everyday, a question mark on my head would appears and make me think like: what if it becames even worse if i stop masturbate? So i couldn’t stop myself masturbating but managed to decrease the amount of it. But that made the ‘‘masturbation’’ process itself, to became an ordinary action like just doing it for reaching the purpose.

But day by day, i started to experience some contractions on my back and legs while cumming. So that was a mark of progress. I started to feel more pleasure and even more of it cum was no more watery like before.

I have seen somebody on internet said Panax Ginseng has helped him a lot so i have tried it. It was two month before. I have used it 200 mg/day (one pill per day) for one month. On internet it says you should take at least 1400 to 2700 mg of Panax ginseng for ED but it’s not sciencitifcly proven and i only took 200 mg per day. I don’t know if it’s due to ginseng or my general body strength or good nutiriton or something else but in last one month since i stopped taking Ginseng i feel like i almost healed. My erection strength is even better than before. In last 3 months i have been experiencing morning woods(not very hard but it’s a good new their existance).

And there is something i have to mention before one and half months(while i was still taking ginseng) suddenly i started to having acnes again. My hairs got noticably oily and i started to having sexual images on my mind. I started remembering some more memories of my erasmus and past journeys. Maybe that’s a good sign of a part of my brain has started working again. But after two or three days i hit to bottom again. My lips and hairs got dry again. I got serious ED again. and it continued like this for a week. After this situation i chose to eat juicy foods and not losing too much body water(i stopped going for max speed sprints because that makes you sweat too much). And after two weeks i reached to possibly top point again. Right now my currently situation is; sleeping quality has increased, my mind-body control has seemed to healed and it’s still getting better, i have better erections and the best part is the tip of penis is erecting too.(i was not able to erect this part one month ago so maybe ginseng helped to blood transferring to these areas.) I manage to have orgasms if i concentrate too much but it’s still not certain. I tried to push myself and see my limits. I managed to keeping the erection after cumming and getting a second cumming(i have to admit second one felt too numb). Right now i realized if i wait at least two days without masturbating the quality increases excessively. And i feel like something tickles my brain during the day. I feel a warm and pleasent feeling going through my head from like inside to out(it’s hard to describe sorry if it’s complicated). Oh and i want to mention i checked my DHT levels one month before and it has become 6,5 times more of the previous test (it was 4 months before) and it’s close to top range. So everything seems really hopeful currently.

Another thing that i want to say is maybe i messed up with my gut microbacteria bc of all this 11 months treatment and lots of alcohol. So my guts bloats after i eat some carbs and sugary food and it make me feel tired. But if i not eat anything which does not contain sugar i feel ok. I realized i feel myself extremely good after 6 hours than eating a meal. I went to doctor for checking my blood sugar levels before eating/after eating. My neutral blood sugar level was fine but we detected after i eat my blood sugar decreases to under the range and after one hour it becomes normal again. So i suspect liver damage or some problem about the usage of sugar in my body. But doctor said this problem can’t be the main reason of my sexual problems because he said i am not a diabetic patient but in future if i wouldn’t eat well i have the potential of becoming one.(i read some articles about how accutane makes people diabetic after or while treatment). Maybe if i can solve my digestive issues my body can heal itself even better.

I believe this evil drug couldn’t effect my body at permanent damage rate. Or did it? Only thing i know i feel myself better while working out. And if i somehow feel myself better while doing something i need to keep doing it. ‘‘Suicide or giving up’’ i don’t accept these options. I invite you people for being hopeful and looking for something makes you feel better.

There are more details and points but this is what comes in my mind so far, you can feel free to ask whatever you want, as i said i will share my test results later becuase i have to collect all of these datas past 6 months. I wish good luck and health again!

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Has this been persistent for you?

I first noticed I could hear my heartbeat when laying my head against the pillow after about a month into treatment with my first course. It was a bit unnerving. I still occasionally observe my body rhythmically rocking subtly in tune with my heartbeat. In fact I notice my laptop rocking on my stomach at the moment. Not sure how normal/abnormal this is but have never noticed this of others or of myself before Accutane.

Noticed you didn’t use the symptom checklist or answer the member story template questions. Was it made automatically available to you?

Thanks for sharing your story here.

At first, i didn’t have an option for symptom checking i think it’s bugged or i have missed it sorry. Is there a way that still doing it?

About heart issue, it is a little bit tricky. Most of day it is not like before but i figured it out it has a big relation with what i eat. After eating deserts which contains too much sugar my heart starts beating harder. That makes me feel tired, and i can easily observe my chest and stomach area moves up and down in every beat. Besides that, sometimes even if i don’t eat anything, i sense some mid level hard beating i don’t know why. But i remember when i was taking accutane, after a meal or taking alcohol my chest was almost felt like exploding. So i can easily sat it’s far better now and even getting better.

Also, i read some articles about how bloating can apply extra pressure on earth. After i eat literally anything my guts bloat, so maybe that’s another reason of that. Maybe sugary foods make guts bloat even more and that can effect it, that’s my guess tho.