Hi @nate99, it’s possible that nobody visiting the board at the moment knows the answer, unfortunately.
Have you searched and looked at what’s been written on the subject in the past?
Thanks and yes I did, briefly. It did not seem like anyone had cast any suspicion on beta blockers and some were taking them to deal with some side effects like palpitations, I believe.
Hello everyone
The last time I updated this was 2 years ago. I don’t check the forum very often. Every once in awhile to see if anyone’s figured out “The Cure” but am not holding my breath really. In line with my last update, my life has generally improved, particularly compared to my first several years with PFS. I’m now about 10 years (sigh…) with PFS.
It’s been a long time since I’ve had a full blown “I’m recovered!” temporary recovery, but overall my baseline is much better than before. I still have days where i feel grossly pudgy like I have high estrogen, but my sleep is better and overall mind and body are better compared to before. Before I was a zombie, even masturbating didn’t give me any sexual pleasure. I had constant bodily discomfort, particularly in the pelvic floor area. I could jog but it just felt like my body was under such a burden all the time.
Since last summer I started keeping a spreadsheet of my symptoms and days and I’ve hit the year mark. It was a good thing for sure. I’m seeing that very few days happen through the year where I marked down that I can feel life again 100% but they are definitely there. There are days where I can feel feelings and music and attraction and everything again, like if not 100% then very close. There are days where I feel extremely horny and there are sexual thoughts that come about specific women. There are days where I feel emotionally like i have a crush on a few different ones, which when your emotions have been mostly dead over the years, it’s kind of a big deal. There are several days where I can run again, and when I run I can feel that easiness of running, like I can dig deep and find endurance and not just feel uncomfortable and disconnected. They all fade away but I can say that the every day baseline is improving.
If you don’t keep a spreadsheet of your symptoms, I suggest you do. I highlighted days in red or light red depending on how bad where i’m not feeling good in some way. There are days where (maybe it’s my imagination) but i feel like the chemicals in my brain or so deficient that I can barely feel anything. And then there are good days where I want to do things again like go out and listen to music and explore. Most of the days are somewhere in between. I made a kind of color coding system (which is harder to consistently keep track of then you’d think) but in my estimate, roughly 10% of the days in a year are days where I feel something approaching really normal, like I could possibly sustain some kind of normal relationship. Maybe 1% of the days are days where I feel almost 100% better. I’d say less than 10% are days where I feel terrible now.
My main thoughts right now as I’m approaching 40 and many of my friends are settled down now, is how or when is the right time to try dating again? I’m sure it’s not what a lot of people want to think about right now, but I think i’m approaching being able to try again. Until I’m fully cured, there will always be awkwardness and tough times, and days where my dick is disconnected to my brain. But does there come a point where I’m ready to try again? I’m pretty nervous about it to be honest. It’s been so ridiculously long since I’ve tried to date and I still remember how tough it was when this first started.
Has anyone tried yet? Or started to think about trying? I’ll post in the cope and possibly general sections and see if anyone has given it any thought yet.
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Update for Winter 2021:
This has been a particularly hard stretch of time for me. Every travel plan I had has been canceled due to covid and even alternate plans I had were also canceled due to either terrible weather or people I was going to see got covid. So I’ve had a long stretch of time to just not really do all that much. Most of my friends here are hunkered down trying to avoid covid. It is tough.
However, I have hit a stretch where the last few days I had a temporary mental recovery. It wasn’t as great as it sounds in some ways as i had some depression. Prior to pfs, I had powerful bouts of OCD and Depression that required SSRIs to get under control. After pfs, my brain just can’t really get those attacks in the same way. Saw some people on Christmas Eve and Christmas day, and that night I had a really powerful dream (I almost never dream with pfs) about an ex that it was never quite fully resolved with decades ago (well she got married and has kids so maybe it is resolved). The dream was so powerful and in it I felt like she was really there, and I felt emotions like loving someone and being loved. I woke up and felt like crying. My brain was telling me that I made the wrong decision decades ago by not trying to get serious with her and those memories of those days (around college time) just started flooding back in a way that made me feel I was mentally recovered (at least temporarily). Everything felt more real and smelled more real and looked more real. I went to take a walk and could see some cloudy mountains from the walk, and it looked so amazing. When I am mentally dead with pfs, I look at the exact same thing and think “That’s really beautiful” but not feel the awe, but with a recovery, I look and I feel the awe. That’s the best I can do to describe what it feels like. I spent a couple days feeling like this, mentally more alive, but more depressed in a powerful way. When mentally dead with pfs, i don’t really feel emotions like loneliness or sadness or regret, what I mostly just feel is numb, a feeling of fear that this will last forever, but not an intense fear. And a feeling of inadequacy at not having settled down. At the moment, I didn’t sleep well last night and i feel it’s probably coming to an end again. I’ve been just drinking tons of water lately, probably 3X more than before and i really haven’t been eating much. The last 3 or 4 days I’ve literally only had two salads. My body isn’t screaming for food and i only eat once I can feel my heartbeat getting irregular and a starting getting lightheaded. Even though i’m not eating, i’m still once in awhile refluxing acid.
Anyways, this temporary mental recovery is one in a long string of them for me. I’ve been keeping track of them on a google sheets document. Summer of 2020 is my first recorded one in July (though i have had them previously, it wasn’t recorded), similar everything, was starting to think about life and just suddenly something flipped. Around 7 months later in March I had another one. In May a couple months later I had another one, this time where i actually felt romantically interested in one of my coworkers for a few days. Got the nervous feeling in the pit of my stomach type feeling. Didn’t exactly last but for a few days it was there. About a month later, similar, there was a crazy romantic dream i had and woke up feeling feelings again, was over a few days later. Two months later post sickness I had a very long stretch of a week or two where I felt mentally recovered and the sex drive was much better. That was interesting as it was coming down for several days i thought it was over and then it came back stronger for several more. Three months later in November, I had another day or two as well. And then a month later I just had one.
I’m not sure that I’m doing anything to cause any of this, but when they come they feel great. If there’s just one symptom I could eliminate it’d be that. To feel the connection to life makes all the difference. I can get past anything if i have that, i could actually start trying to live again. As far as regimen, i’m a person that hasn’t really done anything but occasional probiotics and diet for a long time.
Does anyone think this is a positive sign? I’m not sure because I haven’t had a full blown temporary recovery in years where EVERY single aspect is better down to the hardness of my erection. However, every single aspect is better on a day to day basis compared to years ago during times when I’m not temporary recovered.
I hope I can get some kind of response as while my mental recovery might be slipping, it’s still easy to feel some kind of depression right now
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Although my mental sides are more or less resolved now (I hope I can keep it under control further) I can relate to your experience. My baseline seems to be pretty flat in the emotional sense, so any positive spikes make me really excited. Unfortunately, it doesn’t affect much my sexual sides.
As you keep track of your recoveries do you observe any improvement with those recovery periods? Are they happening more often or do they last longer?
What about your sexual sides at present?
Hi Ultra, thanks for responding. Did you do anything to get your mental sides under control? And did you experience what I have, where it’s like you just don’t feel connected to life, like a haze is in your brain or just like parts of your brain just aren’t active?
As far as sexual sides, I’m not sure that it is coupled with what’s going on mentally, or not totally. Generally speaking when these mental recoveries happen, if I masturbate, it feels quite good, very satisfying. But sexually, there are still issues. I don’t often wake up with morning wood anymore. The last full temporary recovery was probably many years ago where it was full on everything down to the tip of my penis was completely fully erect. Might have been 2015 or 2016, at that time i thought that was it and i was going to recover. I try to think about what i was doing at the time, and it was so much (probiotics (making my own kefir), cold showers, HIIT, paleo diet, no alcohol) but i honestly don’t know if any of it caused what I went through. On that regimen, my gains eventually faded. Off that regimen, some of the side effects i previously experienced have still not returned, or not fully. It’s hard to say. On days when I have temporary mental recoveries, i do find myself more attracted sexually to women. Like I want to have sex on those days, even if my erection quality isn’t perfect.
I’d say more of the days now, I can have a good orgasm if I choose to. Like I might have to stimulate myself a bit, but it could happen. There are still considerable days where I would have trouble maintaining my erection if I were with a girl. Right this very moment? I’m going through a period of not really feeling the urge to masturbate, been a few days now, not getting a lot of erections.
I don’t know if there is an overall pattern but I do think day to day, much better than several years ago. I was awful when this started in 2011 or so. Until around 2015 I would feel sick in my stomach if I even looked at a girl that I felt was attractive.
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In my case it all started because of acnecutane, so there are likely to be differences in the type and amount of damage. Although my experience is very close to that of people with PFS. My mental sides were most severe while I was on drug and in the initial period afterwards. My actions to mitigate those sides were focused around improving my sleep. Looks like, I could achive that through fixing my biological clock(circadian rhytm). Also I took some supplements but now I doubt they had significant effect on me. So improvement happened with time and now I can clearly see the difference between my normal state and periods of anxiety and depression.
Feeling not connected to life? It’s a bit vague description, but I think I get it. I do experience something like that from time to time but it’s usually quite brief. Although very often I feel like there’re many background processes in my brain that make me lose attention and be quite slow with some everyday tasks. But I can’t say it’s seriously spoiling my life in general.
My sexuality has also significantky recovered but only mentally, the physical side has worsened, so in that sense I feel that I indeed lost connection to my body.
I see, thanks for sharing. When pfs first started for me, for the next 4 to 5 years I had a daily constant feeling of being disconnected from my body. I don’t want to say that I wanted to kill myself at that time, but i do remember thinking that if i died it wouldn’t be such a bad outcome. It’s like a feeling that between your mind and your body, there’s just some kind of disconnect. I couldn’t describe it really well, but I felt like a ghost in a machine. About 5 years later I do remember that just abruptly stopped with the aforementioned last time I had a full temporary recovery. For me that was a bit of a turning point, it’s like my mind, body, genitals, everything felt different from then on. A lot of things came back down after that temporary recovery but not even close to the point of where i was prior to that. At this point, the disconnect from life is still mostly there unless I’m in a temporary state of mental recovery, but I don’t necessarily feel like dying anymore. I hope any sensations of disconnect do pass for you.
While I haven’t had days of complete sexual temporary recovery, I have had days that did seem to border it. Where my genitals just felt different, and free-er, and better. Days where I just needed to masturbate and where I didn’t really have to try to stimulate myself. The fantasies, being horny, it was all there. I think those come less frequently than my temporary mental recoveries though, but I’m sort of guessing, while I do update my symptoms sheet document pretty regularly, I don’t always feel like doing it and getting super in-depth about the descriptions is somewhat tedious at times.
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This is how I feel too. Well described.
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So I’m coming off of a temporary mental recovery for the last 4 or 5 days. The connection to life has definitely lessened. I haven’t been sleeping well for the last several days and today I woke up and while my mind is more clear compared to a week ago, I’ve lost something. The edge is kind of gone, my sense of smell that would trigger all of these memories is gone. The same tree I smelled just yesterday and got all these emotions from I can’t smell today. It feels like my awareness yesterday included all these sensations and today it’s just less.
I do feel like “giving up” today though that phrase doesn’t mean suicide for me. I’m not sure what it means, i’m just tired of the back and forth. When my mind is back to normal, anything seems possible. When i lose it, nothing seems possible. I don’t know how much time I have left before it becomes difficult to have a good life and to share it with someone. I can slip into depression when coming down.
To combat this, I think it helps me to keep track of what has definitely improved, without question, from the first days of pfs:
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Sleep - From 2011 to around 2016 or so, there was no real sleep for me. There was closing my eyes and waking up and feeling exhausted. I now have better days where sleep is deeper and i get eye boogers, but i’ll admit that’s not every day. But day for day, it’s better
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Attraction to women - 2011 to 2016, looking at an attractive woman would make me feel revulsion. That’s gone
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Digestion - 2011 to 2016 - Food would just sit in my stomach for hours and I couldn’t even feel it being digested. That’s better now.
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Bowel movements - Before - I would crap out the equivalent of a garden burger, so much indigested food on the toilet paper. Now it’s digested even if the color seems to vary day by day. It’s too watery and maybe mucus-y (shiny?) but it is better
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Depersonalization/Derealization/Emotional Blunting - Before - I felt like a ghost in a machine. Now - I feel a lot closer to what I need to be. The ghost in a machine feeling went away after around 2016. I can feel the connection isn’t totally gone after this temporary recovery but it is weaker.
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Twitches - Before - Multiple twitches every day. When falling asleep, when sitting down. Now - Maybe a few times a month at most, pretty much only when falling asleep. Very rare now
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Masturbation - Before - Clear liquid, poor erection, no sensation when ejaculating good or bad, felt terrible physically after ejaculation. Now - Cum thickness varies, erections are generally better, definitely feels better, some have been very strong orgasms, I don’t feel bad after ejaculation
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Penis feeling - Before - It was a dead cold appendage pretty much every day. Now, mostly, it’s warmer, more full most days
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Acid reflux - Before - Terrible, several times spent more than an hour regurgitating food and acid up. I still reflux acid but not as often and not as long
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Everything is dry - Before - Awful, eyes dry, nose dry Now - everything is more moist
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Mental concentration - Before - Trouble focusing, trouble remembering and keeping concentration Now - Much better, I can easily concentrate, my mind is clear, I don’t have any cognitive issues, though sometimes I forget about something I was searching for online
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Well described. I relate to most of the things you mention.
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Really? Similar PFS symptoms? Found anything that’s helped out? Just over time gotten better as well?
Mini-update: Right now, everything feels like a yoyo. Yesterday I was sure it was all coming down hard, today, i actually felt pretty good. I wouldn’t say as connected to life as a few days ago and the smell especially isn’t back, but there was a buzz in my mind and I felt functional. I also got really hungry and i haven’t been hungry for the last week. Right now there’s just a lot happening and I hope wherever I end up after things settle, I won’t be too far off mentally compared to where I’m at now. Right this second I’m really close to a functional mental level. If i’m not there, it’s on the borderline.
Nah, just your description of those windows of recovery are quite relatable. I’m considering trying bupropion.
I don’t know much about it, but I wish you luck in whatever you try. I’ve pretty much avoided any kind of treatment that wasn’t just harmless supplements, vitamins, probiotics, and exercise. I don’t know if that was better or worse than trying anything else. I don’t think anyone really knows
The only reason I may opt to take it is because of the numerous and relatively consistent positive stories about it improving sufferer’s lives. Of course it comes with risks, I know.
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Nate,
I have 2 questions
From 2011 to 2016 means you had to wait 5 years before get first signals of recovery?
From 0 to 10
If when you crashed you were at 0
Where are you nowadays?
I hope it works and i’ll be trying to keep up with your story!
@finaduta Hello
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Hmm. I think so. My crash happened in around summer of 2011 to fall 2011, about two years after I quit my last meds (dutasteride and previously finasteride). It’s a little uncertain because by the summer I knew something was wrong but i made a complete temporary recovery for ~5 days and then a hard crash down. December 2015 / January 2016 was when I would say “the reversal” started. So 4 years and a few months.
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If I was 0 then, what am I now? And 10 is complete recovery? I don’t know…7? 8? It also kind of depends on what aspect. I usually think about mentally, physically, sexually. Mentally maybe 7 or 8, physically maybe 8, sexually currently 4 or less but generally 6 or 7. I’ll further elaborate on each below if you’re interested
Mentally, i’m a lot better right this second but I don’t know where my mind will be in a few days, weeks, months. I could crash back down, or this latest temporary recovery could have “unlocked” a new aspect of recovery. So like right this second a 7 or 8 but it could change by later today
Sexually, right now, it’s not great. Since this whole temporary mental recovery has begun, i’ve felt pretty much no sex drive. My penis and testicles have felt really shriveled as well and my balls have been kind of sore. It’s definitely below my usual feeling. My penis has been somewhat cold as well. Whatever is happening right now, i have no desire to masturbate. When I urinate it’s drizzling out. I figure my genitals are trying to heal or something so I’m not going to worry too much about it. But the awful pain for the first few years in my pelvic floor area is gone. I don’t feel sick when looking at a woman. I don’t feel the constant feeling of my ball sack being huge and my testicles falling really low. So right this moment, like a 4 or less but generally day to day it’s more of a 6 or 7 and occasionally higher
Physically, like an 8 or so. I can regularly exercise, jogging, hiking, biking, without physical discomfort like when i crashed. Back then physical exertion made my body feel terrible and stressed. Maybe it was lack of sleep. Like everything felt unpleasant though I was never as bad as people here that talk about not being able to go to work or have any kind of social life. 4 years ago I hiked to the top of Mt Fuji to see the sunrise so I was never really limited. I’m still not totally recovered as I don’t sweat as much especially in the pits as before. When I run I feel good afterwards but nothing like the after running after glow i feel when I don’t have pfs or when i run during a temporary recovery. My hands and feet are sweatier than they used to be with pfs (bone freaking dry) but before pfs i was notorious for sweaty hands and feet. It was uncontrollable but it would make me self conscious as people would shake my hand and note that i had sweaty palms. I’d kill for that now. On top of that, my body generally still feels pudgier than before pfs. Digestion, there are still issues.
It could also get really complicated by making digestion, sleep, your 5 senses, etc separate categories
Thanks for asking, when this stuff is on the mind all you want to do is engage with someone about it
In terms of mind
If you ever had anxiety, agoraphobia or similar dysfunctional mind sizes caused by the syndrome
how are they now? You are a fully functional adult?