nate99's story

Member Stories
#28

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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#29

This is how I feel too. Well described.

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#30

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:

  1. 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

  2. Attraction to women - 2011 to 2016, looking at an attractive woman would make me feel revulsion. That’s gone

  3. 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.

  4. 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

  5. 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.

  6. 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

  7. 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

  8. Penis feeling - Before - It was a dead cold appendage pretty much every day. Now, mostly, it’s warmer, more full most days

  9. 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

  10. Everything is dry - Before - Awful, eyes dry, nose dry Now - everything is more moist

  11. 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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#31

Well described. I relate to most of the things you mention.

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#32

Really? Similar PFS symptoms? Found anything that’s helped out? Just over time gotten better as well?

#33

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.

#34

Nah, just your description of those windows of recovery are quite relatable. I’m considering trying bupropion.

#35

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

#36

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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#37

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?

#38

I hope it works and i’ll be trying to keep up with your story!

#39

@finaduta Hello

  1. 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.

  2. 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

#40

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?

#41

@finaduta I would not say I had that during pfs. I had anxiety, OCD, and depression long before pfs, starting when I was in college. I sought treatment for it and was taking an SSRI before starting any hairloss drugs. I am extremely aware of what anxiety feels like though have never suffered specifically from agoraphobia. For me, anxiety (connected to OCD) was my mind in overdrive, sending me signals of dread that would cripple me. My mental pfs has always been 100% the opposite. Instead of an overactive mind sending me signals of dread, my mind was not active and numb. No overactivity, no dread, no signals at all. Just completely blunted. No connection to any senses or life at all. I’d feel some degree of fear specifically about mental pfs and how long it was going to last but nothing I’d really say was real anxiety.

In fact, when my crash happened in 2011, I was on an SSRI, low dosage. I continued to take it into my first year of pfs but eventually just stopped because there was no point. I couldn’t feel anything so there was no need for it.

As far as am I fully functional adult? Yes. I have a job that I enjoy even if I am not mentally fully able to enjoy it. I exercise semi-regularly. I have friends, I have hobbies, I travel when I can. I don’t have the type of symptoms people describe of not being able to live and work and function at all (thank goodness)

#42

Funny you say that, i also have OCD.

To me after crashing i experienced a huge rise of fears and anxieties that really disturb me.
I was stable before the crash, now i have problems on having just a healthy mind.

Have you ever had to take SSRI again?

#43

Not since probably 2012. After my reversal in 2015/2016 in the summer of 2018 I did have a full blown OCD return that lasted for months (I think it’s somewhere in the forum) and I strongly considered going back on the SSRI and I was prescribed it by a psychiatrist. However, in the end I opted not to take it based on advice from the forum. There are some people who claim something similar to pfs resulting entirely from taking SSRIs. I myself never experienced that in the many years I was on them however with how screwed up my entire body must be from pfs, I didn’t really have any desire to see what would happen if I could at all avoid it

Our mental states under pfs must be completely different. It’s like pfs overpowered my OCD but it sounds like it might have made yours worse. I’m really sorry to hear that and hope things improve for you

#44

Update a few days later:

Well, this has been an interesting time. I’d say I’m still in a mental recovery right now but everything is uncertain. Day to day everything still looks so amazing, my mind feels freer my head feels lighter but everything is on the borderline. I’m having to think multiple times a day, “Is my mind still recovered? Does everything still feel real? Do I feel trapped or not?” and it’s difficult to say. I do feel free, but over the last few days some things like elevated mood came and didn’t exactly leave but it’s not as high as a day ago. So that’s all just to say I THINK I’m still in a recovery but I can’t totally be certain. I’m generally happy with the level I’m at right this second (I think) and if it stayed like this, I could probably function just fine.

What’s been lost compared to a few days ago: I had a really elevated happy mood for the last few days that seems to have leveled out. My sweaty hands have lowered. My sense of smell isn’t really there anymore

What’s stuck around: The world still looks really nice and I feel like I can appreciate it, I actually want to go do things, I want to go to a coffee shop and sit and read. I want to go exercise. Normally, I don’t want to do anything but sit and not do much. And when I’m doing these things i’m not looking at the clock and waiting for it to be over which is how i previously felt with pfs. I’m more able to just be in the moment. I still feel connected to my emotions to at least some degree. Digestion is better. I’m eating and then within moments having a nice burp. I’m burping several more times and then feeling good, like my food is digesting, not that it is sitting undigested in my stomach. Sleep (even though I don’t feel like I completely fell asleep) feels good. Lying down feels good. My body, generally feels good.

What’s gotten better over just the last few days:
I don’t feel bad about my life. During a mental recovery I can feel my personality returning.

Tomorrow if I can say I’m still mentally recovered this will have been tied with the longest mental recovery I will have had and that previous one was 4 months ago. Really hopeful that this is a good sign of things to come, even if I end up losing this recovery

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#45

Thank you for everything.
Is really difficult to find old member, you are like a glimpse of light.

You know what happened with the rest during all this time? They tend to dissapear and never return

#46

I don’t know what happened to all of them. I hope they didn’t do something like suicide. I didn’t post for a very long time because I just wanted to focus on my recovery and not get bogged down by the negativity. There was a time when it was really negative here. I remember posting something like “all we can really do is hope this improves” and someone blasted me for a “damsel in distress mentality.” It was just constantly stuff like that. There also was a split years ago where like some of the forum went to another forum called like solvepfs where they were going to focus on trying to find their own cures and this forum was just trusting that the research would end up finding something. Maybe they’re there? Maybe they recovered and never came back or maybe they’re just coping with it and trying not to check the forum

As an update yesterday I could feel the mental edge slipping. The music I was listening to was starting to create less and less of an emotional response in me. It’s like it would come into my brain and rather than rattle around in here it would a spot that would not move anymore. My mood came down and now it feels like I can safely say I’m suffering from mental pfs again though I’m not sure to what degree. I’ll see today, walk around outside, do some activities and determine where I’m at. This is still really close, like just one screw just got overly tight or overly loose and that was the difference between having a personality and not. On the one hand, sad if I’m coming down, on the other excited for the next recovery and hoping the accelerated nature of these recoveries means I’m gonna eventually recover fully

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#47

I feel that too. Now, after a couple of years of this shit, I can clearly tell when my mental state is OK and when it’s definitely not and experience some negative influence. It’s almost like observing your inner mechanism from aside. As you’re experiencing smth like that too, does it help you to cope with your mental problems?

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