An Accutane Story [Isotretinoin] (Long post)

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#28

If they think its mental health there is no point going back to your Doctor.

When I went to my local GP clinic about PFS they were worse than useless and tried to blame all my physical problems on “depression” which I didn’t even have at the time.

If your looking for a Doctor that may be able to help you I’d recommend going to see Dr Edmond O’ Flaherty in Dublin. He deals with PFS patients and is one of the few Doctors who will actually listen to the patient.

Hes not like most Doctors who think they know it all.

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#29

Thank you so much Mark i wasn’t aware anyone in Ireland knew about this condition, would it be possible for you to send me his details as I have no idea how to contact him, have you seen him yourself? I know im an accutaner but i think the same advice applies, i really just need to stop my skin decaying because right now i genuinely feel im going to die or be in a state not livable, the doctors appointment today made me extremely upset today and now some of my family thinks it’s mental too, that somehow im making myself worse, as if seeing my body decay isn’t traumatic enough. It’s like telling a cancer patient to cheer up because being upset is causing your body to damage itself.

#30

Thank you Scotsman, I won’t budge from what i know is true, I’m hoping if i go and show them my actual skin they’ll believe me, but due to past mental health, they’ll probably say oh you always had that… Or say it’s from aging… Yeah, sigh…

#31

So sorry to read your story Devolution, just wanted to thank you for having the courage to put it out there. I share so many of your symptoms despite taking a different drug. It’s uncanny really.

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#32

Here is Dr Edmond O’Flaherty’s contact details.

Yeah I saw O’Flaherty myself hes a great Doctor.

http://www.gleneagleclinic.com/doctor-edmond-oflaherty.html

Dr Andrew Rynne also deals with PFS patients but he is now retired from general practice.

#34

I know exactly how you feel Devolution. I also can laugh uproariously on occasion. But still dead inside. And also get dizzy and ill from minor physical exertion.

I’m so sorry your family aren’t supporting you as they should. I know what’s it like to have the doctor’s think you’re mad though. It’s crazy to me that this condition still isn’t officially recognised.

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#35

This is so typical. It’s a shame, but be prepared for most of the people close to you to be in disbelief. Certainly you have shown them every bit of documentation available describing PFS and reports of depression and sexual dysfunction as side effects of Accutane. I think that is about all you can do. Not sure how the physical changes go ignored, but if you fall anywhere within what someone considers normal for a physical trait, they will ignore the change.

One of my very good friends went through chemo, and I think a bone marrow transplant, in his early 20s and talked about losing his libido, strength, and energy, and even mentioned problems with ED and severe depression. He said everything gradually recovered soon after the treatments were stopped and the cancer was put into remission. Thought he would be one of the few people to understand when I told him about my problems to explain why I was without a regular girlfriend for most of my life and regularly turned-down opportunities for hookups. Also tried to describe how this condition effects me mentally to explain why I am often distant and with a blank expression on my face.
…He told me that I only had these problems because I believed I had these problems. One of the most insulting things I have ever heard come from someone’s mouth and I felt an intense urge to smack him across the face at that moment and it could have turned ugly if it wasn’t a phone conversation.

It will be best if you try not to let it get to you too much.
Don’t expect anyone to understand except for those who are also dealing with PFS/PAS/PSSD.

I’m glad to hear you have found support here and we all are glad to have your support as well.

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#36

Haven’t told my best friend, he wont understand. That’s shocking from your friend there.

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#37

I know how you feel. I thought I had EDS before I learnt about PFS.

I got PFS symtpoms after taking antibiotics (keflex)

I also have thin skin/muscle wastage. Sucks balls…

Have you made any progress?

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#38

Hey Jupiter, no unfortunately I haven’t seen any improvement yet, it’s still worsening 11 month’s later so I’m hoping it’ll eventually balance out, once it does I can then try tackle the issue.

How long have you been off the medication now? Did your condition start on the drug and get worse after?

#40

This is great Devol! I tried to msg you on skype , hit me up when you have time.

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#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?

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#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.

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#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.

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#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.

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#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:

Screenshot_20181004-062825
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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.

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#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.