An Accutane Story [Isotretinoin] (Long post w/images)

accutane
isotretinoin

#42

That’s jaw-dropping! Not only genital numbness, but he also experienced loss of emotion like so many of us.

There have been others say they were in contact with another person affected similarly by Accutane, but they wouldn’t have ever known unless they prompted them with questions about specific side effects.

I know of someone, through an ex-girlfriend mentioning it, who was on Accutane and also had some degree of ED in his teens. I believe he is a distant relation of mine, so this might point to a genetic component of certain side effects.

I have also been very open with coworkers about having these issues and gave a stern warning about PSSD to someone after he said he was on Prozac. He put his head down and mumbled something about things not being the same. I never pursued the subject after that.

This condition must be grossly under-reported and might be considered an “unspeakable” illness because of the stigma.

Did your friend have anything more to say? Did he recover from this completely?


#43

Yes I do believe it would be very unreported, I myself am very open about stuff, always have been with mental health etc and am the same with this condition.

My friend said his legs, penis etc are returning to normal but he feels he still has some slight emotional nunbness, he started doing a few recreational drugs on nights out the past few months and im curious if the depression and emptiness he must of felt on accutane has led him down that path, i didn’t ask any specifics in that regard.

He actually said to me his acne is returning on the back of his neck which would probably imply the drug didn’t have permenant epigenetic changes in that regard, as for his skin its not as bad as mine but he can stretch it a little more than average.
He also said he wants to go back on accutane if his acne comes back and i asked why? He said quote “my minds already fucked up I don’t really care anymore”.
I don’t know if he means from accutane or in general but i do think it’d definitely be a contributing factor if not the leading factor, why would anyone who got side effects like these want to do back on a drug that messed them up? I told him he got very lucky, but maybe he doesn’t know what his emotions where like before, I’m not too sure i didn’t want to ask too much.

*Edit - I just remembered he also mentioned something about his vision being a bit off, like he can’t see the same as he did before. Like myself and many others.


#44

Hi Devo,

I’m glad you were able to connect with a friend who’s close in proximity to you, I hope that you can leverage him on those days when you need support. Part of feeling that sense of relief comes when you know that you’re not alone and I’m glad.

What’s also interesting is that there are others in my bro’s area that have similar side effects I think some people handle it differently, others may not even know that the drug did that to them so they just “deal with it” assuming it is something they were to go through as they get older. What’s happened to all of you and continuing to happen to others and probably more over a longer span of time is ridiculous, its almost like a episode from black mirror. There is got to be someone out there in the world that knows what exactly is going on, someone who’s probably hiding in the shadows from the pharmaceutical companies.


#45

@Devolution perhaps you should get your friend to sign up here. I can’t believe he’d risk going back on the drug when he has so much more to lose.


#46

Yes i wish he would but i don’t think he’s that kind of person, he just doesn’t seem to really care, he definitely hasn’t been hit as hard but certainly if he experienced numbness in the legs and penis from accutane alone I’d definitely say he’s prone to this disease.
As with me i got hit by SSRIs 3 years ago and knocked out by accutane last year so if he is susceptible, I’d say he’d end up a lot worse if he uses it again. Hopefully he doesn’t but I did warn him.


#47

I thought I’d post a screenshot of a comment I stumbled across about visual snow issues.
I couldn’t of wrote it better myself and it’s nice to know someone described it the exact same way as I was trying to.

The comment about only really being able to focus on one word showed me that person must see the exact same as me. He even mentioned he can’t really focus on anything which is how i feel, i have to straun my brain to keep looking at something still. It’s extremely irritating because I love playing video games and obviously if I’m playing a racing game it’s either focus right on front of the road and not be able to appreciate the car detail and everything else, or focus on the car and not be able to see the road on front of me, with anything these days I have to scan my eyes around to see the full picture. A massive TV wouldn’t even benefit me because I can only focus on a small parts of it. Obviously it effects everything in my life but I used a game as an example because well, I love games :grin:

I hope this description can help some others because I’ve had a few people ask me about my vision so this is the best example i could find.
I will add when this initially happened I completely wrote off living, it was that bad I couldn’t see how i would last another few months, although my vision remains the same now, my attitude and brain have adapted and I’m slowly starting to like thing’s ever so slightly more, as much as I can with anhedonia.

But trust me, you can overcome it, i genuinely didn’t think I’d of been able to adapt but I can do more stuff now. It’s harder yes and it restricts me, but I’m confident my vision will one day and hopefully in the near future be restored to it’s former glory, when that day comes, I’m going to go watch the sunset with a nice cold drink in my hand, play some music and live in the moment :blush:

On a side note, maybe the research going on with visual snow could help us guy/gals out with this syndrome, the more links we can make, the more of a force we have behind us.


#48

Have you taken a visual field test? This would quantify your narrowing vision. Also, does it affect sport? I have vision issues too, no fun.


#49

Hey Mcbbould, I’m not sure if a visual field test would show anything, it’s weird to describe but i guess it could be worth a shot, i definitely want to get an ERG done on the retina to see if any of the cells are miss firing there, i read on Rxisk a post with SSRIs i think there was seratonin acting on those retina cells or something along those lines, i wonder would it show anything or if anyone else has gotten that test done? If not more than likely a neurosteroid/transmitter issue which they wouldn’t detect.


#50

Makes sense. I had a visual field test and passed. My thought was that I’d you literally are having trouble seeing things in your peripheral (like you said can only see road or car) then you may actually have blind spots in your visual field. The visual cortex is an extremely fragile and serotonin rich part of the brain, so some serotonin deficiency (or damage to serotonin axons) could potentially cause an issue like this. There is a whole group of people who took MDMA and now have long term mental and visual symptoms very similar to ours.


#51

I can see stuff, but it’s low detail unless it’s directly centred i guess, it’s very glitchy and odd looking so yes maybe it could be what you said. Hopefully it’s eventually fixable, i hope I’ll be able to drive, it’d just require a lot more effort to do so I’d say, i have perception around me, but its strange as if I’m not processing a lot of the information so i could miss stuff. Yes i think I’ve heard of that disorder, hallucinogenic perception disorder or something HPPD.
I’ll definitely ask for a test though, it’s better if they find something because then i have leverage, if they don’t find anything they’ll think I’m insane, tbh they probably already do :joy:


#52

Understand - I feel like my vision is “tuned” down like I’m not perceiving everything around me. Like I’m in a bubble. Fortunately, I can drive and play sport. Definately feels strange though. How long have you had this for? Yes HPPD I’ve heard of it too, and it seems permanent :frowning:


#53

I don’t play sports so I wouldn’t know in that regard, game’s like pool are more awkward as my vision doesn’t seem aligned correctly, so hitting straight is a bit trickier.

I’ve had this since February 2018, thats as far as i can remember in regards to tunnel like vision but it could of been when i got the floaters too which was around August-October 2017.
How long have you been like this yourself?

It’s only permenant if you don’t correct the underlying issue :blush: I don’t believe anything is ever permenant personally, maybe from natural recovery but our bodies just need help correcting themselves, hence all the research being done. We must understand before be can correct.


#54

Since April 2018 woke up like this one day after taking fin for three days. Whole world changed over night


#55

Have you gotten an ERG? Think it’s relatively simple to get and I’d be very interested in seeing your results. I’m going to try push for one myself. It’s the only thing that’ll show something I think if it does at all, but that’s the thing to try. Electroretingram.


#56

I’d be willing to try, but I think this is a brain thing not a retina thing. I got an eeg of the brain and it was normal. Has three MRIs, all normal. I also went to the eye doctor and they are going to do a scan of my ocptical nerve because I had high eye pressure. Also want to make sure I don’t have intracranial pressure. I also get bad head pressure, so this is the reason I wanted to presue the intracranial pressure route


#58

I know this is a marketing video for Nvidia’s new Ai powered graphics cards but regardless if it’s pushing the industry forward I’m all up for supporting that.
Once they finish what their currently testing, they’d like to push the technology forward and look into more genetic diseases, could be and probably will be incredibly useful for us.
I’d presume this is what’s being done by Axolotl and Awor with the 23&Me study but at a smaller scale, incredible stuff I must say.


#59

Hey Devolution,

I saw your post awhile ago and have been dealing with accutane symptoms almost exactly the same as yours. Is there a way to PM on this website? I wanted to talk to you about what you tried so far and if you improved,

Thanks


#60

Hello 1dose,
A very warm welcome to the forum :blush:
You can contact me via PM by just clicking my name, from there you should see a button saying message, just click that and I’d be happy to have a chat.

Also it’d be great help if you could fill out the symthom template and share your story with others when you get a chance, the more people that share the better and that goes for anyone else reading this who hasn’t made an account yet. Everyone is welcome here :blush:

You can do this by going to the main page of the forum and hitting new topic, select the category as “Member stories” and the template will appear.


#61

I have this too, it fucks with my head so badly. I want to fight to get out of pfs, but at the same time my motivation for pretty much anything has completely disappeared.


#62

Hey guys been meaning to say this a few days now but wanted to test it a few times to make sure I got the same result.
I have been taking Vitamin C, Cod Liver oil or some kind of fish oil, melatonin and magnesium powder.
Every night I take it I feel weird, head feels dizzy and I feel a little ill or spacedout, only happens when I take this stuff, not sure what one it may be. Could be a coincidence but just something I thought I’d note.