In need of help more than ever

[SecondChance]

Hello, I am from the acne.org site and have come across this site as well as propeciahelp. I personally believe that PAS is more closely related to PSSD than PFS which is why I'm looking for help here (also because acne.org is a complete mess). In this past year, I have gotten much worse (which I'll go into detail shortly), and the struggles this year has presented me, I'm nearly at wits end. I'm trying my absolute best to hang on. I am currently waiting to see doctors, too, but I would like input from you and (if I'm lucky) meso himself.

Anyway, as a brief introduction, I took Accutane several years ago. Within a few weeks of being on the medication I quickly developed all the symptoms which I would have to this day: zero libido, difficulty achieving erections, no morning wood, dryness, and brain fog. This was back in 2015. I went on like this for several years, not really going out of my way to address things, and doctors didn't really take me seriously. For nearly 4 years, this was my status quo.

This all changed January of 2019, however, when I decided to take rhodiola rosea. Something that I truly believed to be harmless. After taking it, however, I developed much more severe symptoms: insomnia, lack of feeling thirsy/hungry, emotional blunting, profuse sweating (from the hands, feet, and back ???) and muscle weakness (i.e. legs shaking when merely walking down a flight of stairs... I'm 21 by the way). So now, I'm dealing with all of this on top of all of the previous side effects except brain fog (which I find strange). Despite my brain fog clearing up quite considerably, I'm quickly losing it because of the insomnia. If I'm lucky, I get 4 hours of sleep at night, and I never feel drowsy anymore. The muscle weakness is also quite scary. Finally, as a quick aside, I believe that rhodiola making me worse makes complete sense: It's highly serotonergic as well as dopaminergic (not sure if the latter is all that important though).

With that being said, I am now more than ever desperately trying to get things back to at least square one. It is incredibly difficult to get through each day, and for the first time in all these years I have been quite suicidal -- I have no idea how I could possibly continue living life like this for years to come. That is not to say that I'm seriously considering it at the moment. I am in fact trying harder than ever to fix things: I am seeing doctors and I am reaching out more than ever, which is why I'm here now.

The specific reason why I'm posting this here now is because I have a doctors appointment coming up soon. I am curious as to what tests I should ask to have done in preparation for the endocrinologist appointment i have scheduled for January. I will post the tests that I have done already (I cannot post the specific values at this moment though -- I got locked out of the portal where I can access those and will address that soon). As a result, I will only mention the one thing that came back out of range: Prolactin ( 50 units when the max range is 18 units -- I believe -- for men). Again, once I get access to the portal again, I will post the other results if needed.

From a previous doctor I had seen before, I tried cabergoline in an attempt to get the prolactin down, but I felt absolutely nothing from taking it. If anything I felt more irritable.

If you have read this far, thank you so much. Any advise or support would also be much appreciated. I need help more than ever.

[Jaxx]

Welcome, and sorry to hear your story man. I have used Roaccutane in the past but i didnt get any side-effects at the time. Looking back it does make me think if it is connected to getting PSSD from an SSRI anyway.
I wish i could help you with a silver bullet, but in my experience there are different reactions to different meds, sups.

As i never had insomnia i dont think my experience can be copy-pasted to your case. Rasagiline did gave me more energy and several people have good experience with it, but then again, it is unlikely to help with sleep.
Hope other people here can relate and perhaps even help you!

[vkn1]

Hi SecondChance, I’m really sad to read what you are going through and can relate because I go through most of it myself. All I can say right now is that over time things get temporarily better and I’m able to just be absorbed in other things to enough of an extent that I forget about my PAS. I think your insomnia will subside reasonably soon. I generally avoid coming on these forums when a I am really bad because they make you think about it more which makes it worse. Long-term, I think the various communities are starting to recognize that they need to start working together and start getting research performed. So I think therapy might finally be realizable. It will be some time but I do think the future could be brighter now. I personally experimented with a lot of medications, herbs, and supplements and consider that to have been a big mistake. It costs money, time, and mental health.

In the immediate, what I would do is focus on sleep hygiene, so no artificial lighting, no screens, etc pretty early in the evening. Read about and be very disciplined about sleep hygiene. In my opinion, your prolactin is much to low to explain any of the adverse effects you are having. So I would not worry about that until see endocrinologist. I have had prolactin several times higher than that (as side effect of a drug) without noticeable effect. Obviously tell the doctors you see about it, but do not assume it is having effect on you because that could be barking up the wrong tree, which is a psychologically taxing endeavor.