I don’t know why I’ve never mentioned tinnitus among the other side effects. At least since I started to feel this weird tension in my head, tinnitus(closer to some low humming sound) is always on. Although I don’t usually notice it throughout the daily activities. Feeling the pressure in the head seems to be not connected with the blood pressure surges, as it was normal when I checked.
This weird feeling in my head has intensified. It’s especially strong when I try to process any more-or-less sophisticated information, like reading a non-fiction book or following some tutorial. It’s very unusual for me. I usually don’t even have headaches or smth like that. Even after sleepless nights.
And now I’m overwhelmed with some kind of mental fatigue. My head feels so damn heavy, yet I’m not actually tired. My brain is like slowly imploding. Perhaps, it’s a sign of mental exhaustion of the recent days. Or my condition is deteriorating, Idk. I guess, I need some rest to see if my state’ll improve.
I’ve made another attempt to get a proper penile doppler today. I went to the head of an urology department in a hospital(by a recommendation). And this guy appeared to be a total prick. He didn’t even have a look at my blood panel, declared all my complaints nonsense and told me to see a psychotherapist in quite a rude way. I’ve wasted half a day and find this absolutely inappropriate.
Something is clearly wrong with my body and I still have no idea how damaged could be my tissues.
Fortunately, my urologist belives me and we’re looking for a solution. And despite he’s been unable to help me so far, nonetheless he gives me the impression of a very respectable person.
1 Like
It’s time for another update. Considering what’s going on around me now, all my personal problems don’t seem so significant anymore. But as it might be interesting for some people, I decided to write about my last observations and improvements.
First of all, I’ve finally made a proper ultrasound examination(with Caverject) and discussed it with two doctors. They confirmed there were no signs of structural changes. The blood vessels are in a good condition, no venous leak. I was told my soft tip problem was connected with the lack of arousal. That’s what I thought. My urologist suggested to try negative pressure therapy. I haven’t decided yet if I should really do it.
Now the key points:
- This tinnitus thing keeps haunting me. I suspect it could be side effect of my extensive use of tadalafil. Although it appeared more than two months later after i started taking it. Andd some short breaks(2-3 days) don’t change anything. It’s always on since waking up. At least the brain fog/head tension has somewhat decreased, I feel a bit better.
- I’ve tried vitamin F cream prescribed by my dermatologist. It did wonders on my horribly dry skin. It still feels kinda dry. But my hands have a healthy look now. No more fissures and peeling between the fingers. I do hope this effect’s gonna stay.
- My acne is healing slowly. It frustrates me a lot. My derm says my skin is recovering very slowly. Together with a few other oddities I attribute it to the isotretinoin consequences.
- For the most part, my sexual sides are still present. It’s been more than 3 months since I really felt a glimpse of sexual arousal. Despite of having erections I still don’t feel anything and don’t get excited.
I’ve recently noticed some improvement in sensitivity and some increase in libido. Erection quality also seems a bit better. The soft tip is slightly better, but still not 100% normal. I’m a bit puzzled what could lead to this improvement as my emotional state is currently much, much worse. I consider it as another evidence that these symptoms are far from being purely psychologic.
- Anxiety and depressive symptoms have returned. Also some minor sleeping issues. It was obviously triggered by the recent tragic events and the overwhelming feeling of helplessness. I haven’t felt that low in ages. Keeping it together isn’t easy as I don’t see any hope in the future.
I keep taking Tadalafil, Omega-3, Centrum multivitamins, and probiotics. I’ll post an update after finishing the course.
2 Likes
Do you have a link? Amazing they even admitted to ED as a possible side-effect. It’s no big deal like rhabdo, joint pain, and hyperstoses from Accutane aren’t a big deal to them.
Sure, this is the article:
Some of the sides are marked as possibly permanent.
1 Like
One of the symptoms that led me here when I first developed PFS, was acne like I had never experienced in my life.
On my face and shoulders mainly, the acne was deep fluid filled pustules. They flared up in the same spots repeatedly, until I was sure scarring was inevitable.
After nearly a year, the acne subsided and has not returned, with no discernable scarring.
I know I’m not providing any answers, but just relating my story for potential benefit of others. Jim
1 Like
Reflex hyperandrogenicity possibly?
Increased shedding after stopping Propecia has been attributed to this rebound effect.
Accutane never had a profound effect while I was on it. Sebum was coming out of my pores like some sort of deranged pasta press for a few days immediately prior to my post-drug crash. It’s common for people taking Accutane to experience a “flare” or “purge” phase before it starts working its sinister magic, but they don’t usually end up like us.
1 Like
I have significantly higher than normal level of 3 alpha-Androstanediol glucuronide (which is said to be a marker of androgen activity in the skin). I’m pretty sure this is directly connected with my acne. Other than that I don’t have hyperandrogenicity symptoms. Most importantly, my libido is still very low.
Considering my sexual sides, I see some improvement but I find it very disturbing that it’s already 4 months since I felt anything close to more-or-less normal sexual arousal. It happened to me in autumn and in December when I was struggling with a bunch of ED symptoms. Now most of them are gone, and I could technicaly have a sex life but I don’t feel anything. It just doesn’t happen to me at all.
That’s surprising. My levels of 5ar and 3a-HSD/HOR metabolites in urine were consistent with what’s typically seen in patients actively taking Accutane 12 years after I quit the drug. Also, borderline low 3a-adiol-g in my blood. I had moderate acne with some cysts at the time it was tested.
There were also a few other PAS patients on the old “All Things Male” forum who posted 3a-adiol-g results. It was something like 3 of us were low, 2 of us were normal, and one guy with above range levels claimed to have the worse sexual symptoms among us. No clue what their acne was like when they had it tested and the forum no longer exists.
Just saying it seems there is little correlation between hormone levels, symptoms, and androgenic phenotype for us.
How are you doing now?
At the same time I seem to have low progesterone. Other people with PAS observe the opposite. I’m cofused with this difference while there’s an obvious similar pattern of the symptoms.
I’ve recently had some period when I felt just like on Accutane again, with the same skin dryness (but also with acne). But my overall impression is that I’ve reached some kind of baseline and now my condition is fluctuating around it.
Not doing well right now. Can probably be attributed to getting old, in addition to the consequences of 22 years with PAS.
I know what you mean about having a general set-point, around which the symptoms oscillate. I guess that’s most aspects of health for most people, but our zero amplitude is much lower post-drug. Looking at it optimistically, at least you can say you’re stable now.
I’m sorry to hear that. I also couldn’t figure out what should be attributed directly to PAS and what to ageing. I can only imagine how hard it must be to endure such long period of PAS. I’m struggling with acne for more than a decade and I already feel exhausted. The development of PAS has just worsened it for me, made me close to desperate.
1 Like
I’m currently experiencing a huge setback. It’s hard to identify a single reason. I did hope I reached some sort of “baseline” that could allow me to live more-or-less normal life. Yep, without former passion, energy or joy, but still close to an average life. It seemed that I only need to make some tweaks. But I was wrong.
It appeared that I could lose even that humble progress I reached.
The only positive change is that the annoying head pressure has significantly decreased after I stopped taking tadalafil regularly. But my nocturnal/morning erections disappeared as well and it’s already two weeks since I had anything like that.
Insomnia has returned too. And although it’s not as bad as it used to be, I still wake up not feeling refreshed or rested. Of course, it comes together with anxiety and heavy thoughts that haunt me before sleep.
My skin condition leaves much to be desired. Although acne is moderate, its ubiquity just kills me. And how slowly my skin heals and how fast it could get worse makes me think I can never reach acceptable improvement.
My recent blood test showed my Testosteron level dropped twice, almost reaching the low normal limit. I haven’t observed it before, even when I was on Roaccutane. My T-level was surprisingly stable during my PAS. Well, untill now.
I don’t know what triggered the setback
It could be treatment with azelaic acid (I was unaware of its 5ari properties).
Or this whole feeling of improved baseline was a mere illusion and my ED was only mitigated by tadalafil without any actual improvement.
Or I just underestimated the level of stress I’m dealing with and it’s really affecting me.
Hey,
I’m really sorry to hear about your current state. If the worsening is coming from the acid perhaps it reverses naturally, are there other people who used it who have experience with it?
I also deal with feeling bad a lot like extra stress bc of the antipsychotic I’m taking. What bad luck that the testosterone dropped :c.
I really hope that the mife I’m waiting for will cure me like it cured Ronnie and you can use it too.
1 Like
Well, it’s time for another update.
Compared to month ago, my condition has definitely improved, but only to the level of my PAS baseline. Sometimes I feel like I’ve almost returned to my mormal self, but the reality proves me wrong. My experience with feeling excitement reminds me of an engine that is producing the buzz but just won’t start. And although I’m far from complete impotence, I still feel sexually impaired, and it brings my frustration on another level(which is already pretty bad due to other issues and the current geopolitical situation).
Besides, I have to state that none of the treatments suggested by my derm has helped me. It’s another half a year and there’s no improvement in overall condition. No topical treatment has any significant effect. The feeling of defectiveness and inferiority, that once seemed to be consigned to the past, has made a comeback. Looking at the happy couples I feel like I just don’t belong to the normal life. From time to time I’m tempted to try Accutane again, as I haven’t found anything useful except that damned drug.
Oddly enough, the majority of my positive changes are connected with my mental state. I’ll list them to be clear.
-
First of all, I’ve noticed some apparent improvement in my memory(especially, the short term one) and focus. My mind feels sharper and clearer now. Unfortunately the effect is somewhat spoiled due to anxiety and frustration.
-
Sleep quality has significantly improved. I still have some issues with falling asleep, but I feel way better in the morning now. I think the method suggested by Dr Huberman has proved its efficiency for me once again. I wish it could work faster though.
-
My visual libido has returned. I’d even say that my libido has grown stronger in general, but I don’t feel it in my body, only in my head. From time to time I experience the flashes of that exciting feeling in the chest, but every single time it is fading away, not developing into that strong sexual excitement I used to have.
-
Morning wood has returned. But at the same time some ED issues (like the “rubberness” and so on) has returned as well. So, I must admit tadalafil didn’t provide permanent improvement. But I still avoid taking it daily because of its possible connection with the tinnitus(yep, it’s still there).
-
The skin dryness has not returned. I was afraid I would have those dead-looking hands again once I stopped using the vitamin F cream daily. Luckily, it didn’t happen.
-
My hair loss rate is still very moderate. Nothing like that terrible post-accutane shedding.
-
Looks like my body isn’t deteriorating faster. I had an impression that my ageing intensified while I was on the higher dose of Accutane. I guess, that stopped after discontinuation of the drug.The apparent collagen loss and loose skin is still bugging me. But at the same time I still have quite youthful look and regular working out has obvious positive effect on my body. I wish it wouldn’t be spoiled with acne though.
2 Likes
I’m very frustrated with the lack of progress. It’s like being trapped in my personal limbo. PAS (or whatever it really is) is making all other problems so much worse.
My main achievememts so far are finding a way to deal with the insomnia and anxiety, and working out daily. I believe it improves my mood and overall mental condition. But I still feel kinda numbed, emotionally dull. I don’t enjoy many favorite things as much as I used to. And I can hardly feel satisfaction with anything I do. Even having a better physical doesn’t feel rewarding. What’s the point of having abs, if I can’t take off a T-shirt on a beach because of the goddamn acne?
The most frustrating part is still sexual dysfunction. Not much progress in this sphere, I can have erection without any pills, but I never can be sure about it. Usually it’s worse in the evening.
The lack of sensitivity hasn’t improved a bit. And what I find the most worrying is lack of sexual arousal. It’s already 7 months since I really felt something like that in a natural way. And it’s gone.This feels actually alienating and is putting a strain on my mind. I don’t have physical urges, but it’s like a phantom pain, I guess.
I never thought I’d ever miss so much not only having sex, but just simply wanting it.
1 Like
I’m really sorry @Ultra. I can relate to a lot of this. I hope you see some improvements with time.
1 Like
Self-reporting form
- Name of the therapy/substance: *Accutane
- Dosage: 40 milligrams
- How often you took it: Twice everyday
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ X ]
- Duration of use: Days [ ] Months [2 Years ] Years [13 to 14 and again from 18-19]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [X]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
Today is my birthday. Soon I’ll “celebrate” the 3rd anniversary of developing PAS. That’s still very unusual and frustrating experience for me. And I don’t see any signs of possible recovery. The previous year was especially disappointing as I didn’t observe any positive fluctuations like my body(unlike me personally) completely ceased fighting for recovery. At the same time I tried to recover my better mental condition and had some moderate success.
mm
The most disappointing and mysterious thing for me is that it’s already more than a month since the last time I was able to feel some arousal. Recently I realised that for me this state could be compared to some consequences of a stroke. At least this is how I try to explain my experience to others.
It feels like some important mechanism in my brain that was used for recognition of some natural sexual stimuli and initiating the corresponding reaction is gone. It could be either destroyed or just suppressed, but it’s definitely not operational since the beginning of January 2022. It’s pretty close to how I felt on the higher dose of Roaccutane. And it seems so weird to me as even after developing PAS i still had some brief episodes of partial recovery. Or at least some periodes when I had ED and numbness, but still had some sexuality in me. Well, not anymore.
At the same time I still have persistent genital insensitivity. Interesting to note, that any physical stimulation without any conscious sexual thoughts has absolutely zero effect on me. My body pretends it doesn’t notice it at all. This made me try to recreate the state of mind that I used to have once when I had dating life. Well, it appeared to be harder than I thought, as all those sweet memories seem so elusive after being in this limbo for years. I managed only to recover some part of my mental attraction. I think it’s good for my mental well-being, but it didn’t change anything in my body.
At the same time I observe moderate but persistent anhedonia. I’m able to live a normal everyday life communicating absolutely fine with other people. But the higher levels of some (most of all, pleasant) emotions are no longer accessible for me. I tried to recreate it as well and failed completely. I just don’t enjoy things I used to enjoy as much.
I decided to improve my lifestyle and added yoga and gym with some swimming and sauna. I already see some better changes but nothing related to PAS.
My skin condition is much better now. I even stopped being shy about that. But I still feel bitter about that, especially because I don’t see any glimpse of hope for full and ultimate recovery. I was robbed of three years of my normal life and I don’t even want to imagine how I could survive a decade like that.
3 Likes