Are u talking about RG108, is this the study you talk about, this substance i will be trialing. Have used small test doses a few times already.
1 Like
Either RG108 or something along this line.
I don’t know to which degree human cells are methylated at conception (when the egg is fertilized.). I know almost all markers are removed from the parent’s DNA but some persist and can even come from the father.
Is the process of eliminating methyl markers like rebooting our DNA, or is there any danger of completely messing up the cells reproductive mechanism ? Certainly, removing lots of those methyl staples would result in a different person, for better and for worst. Many markers were put there during our first 3 years after fertilization and they prepared us for a life of scarcity, an easy life of peace, a dangerous one where anxiety, stress and vigilance are preservation mechanism etc…
I wonder to which extend demethylating the DNA could change a person, making that person more like the result the original, unmodified DNA would have given. I find this science fascinating. We’re talking about our DNA’s ability to learn ! In our case, we’re talking about removing a trauma from our DNA’s memory. Take this as a metaphor rather than a statement.
I’ll keep studying this. I find the subject interesting by itself. (without consideration about how it affects us)
Sounds cold, but hey ! We’re all going to die anyway. Most of us not from pfs, so might as well have some fun and learn interesting things while we’re here !
I’m trying what I’m hoping to be natural equivalent found in everyday food or produced by the body. I have but medium expectations. Rather neutral until proven true or false.
2 Likes
I am aware of that and again, i’ve explained my position re how the tech will progress. I’ve no doubt it’ll be in a position to be useful to our condition specifically soon, so there’s no point debating this since we have opposing views re that.
Quick update: the thought streams of many of the posters in this thread (myself included) are prone to be stuck in a catastrophic loop that life is over and will never be the same.
I’ve been meditating 40 minutes a day recently and I can promise this will help pull your mind back on the track of healthier thoughts.
Please, for those of you in real despair, try meditating. Start with a guided meditation app first as it may be hard to just sit and follow your breath in a state of extremely dark thoughts.
10% happier is the app I use for guided meditation.
I can see how many are stuck in the dark thought pool in their mind and really wish I could convince people to learn about meditation and practice regularly because it will tame the waters of that pool.
3 Likes
I find myself going back and living in the past such as 2013 the last year of health that I truly expeirenced…I have even went so far as to watch all my favorite shows and youtube vids etc…from that year and have even went back and did similar things that I did in 2013 on the exact same dates in 2019 because the calendar is the same this year as 2013…Hoping to get something back from the piece of reality that was normal back in 2013…
5 Likes
I’m living the evidence. Neurotransmitters like Dopamine (no emotions), Serotonin, GABA, Acetylcholine (dry mouth, foggy memory), and probably some other of the 100 neurotransmitters that scientist know nothing about are likely fucked. In addition to the AR. Dr. Goldstein and multiple neurologists I’ve seen have agreed with me. Maybe that’s PSSD but others here have similar symptoms from finasteride, although the no emotions and genital numbness seem more common in PSSD.
What are your symptoms borax? I see you go to college so your obviously better off than a lot of people here.
Would I have not been so blunted I would have cried for this, seriously a sad story which displays how fucked and ridiculous this situation is.
3 Likes
I can back that up. I started meditating at least 60 second a day. I know 1 minute is nothing. But I have one unbreakable rule: it has to be every single day, no exceptions. This is why I make it small.
In practice, I do more than that. I started meditating at the bank, at the school while waiting for my son, with children running around and being turbulent, and I practice being in the present and being mindful while driving.
At first, I Though trying to stop thinking was a waste of time. I could not have been more wrong. The more I do it, the better I am at it. I can now stay calm and watch nature, in the present moment, without thinking of the future or the past. I realize how much my thoughts have been hiding my perception of the world. how much time I wasted not living in the present but having my mind elsewhere, in the past or the future, where I don’t exist.
My anxiety level have dropped quite a lot. I feel more joy.
There is no life but in the present moment. I learned that through my resent meditation.
I’ve been divorced twice. Just had a third son with my third wife. I went bankrupt twice, but had 3 businesses. I was preparing to commit suicide once and was depressed since I was 9 and I was alcoholic and in worst shape than pfs ever put me for a few years. (i stopped completely 9 years ago and never turned back)
This pfs thing does no even rate second as the worst thing I had in my life. I would rate it third or fourth, maybe fifth.
But that doesn’t matter. When living in the present moment and not thinking, there’s no point of comparison There’s only my own existence right now. Usually, that feeling cools down depression and anxiety as I realize that right now, in the present, there’s nothing to be anxious or depressed about. (well, if I start thinking I could find plenty.Lol. That’s the point of not thinking I guess).
I also suggest meditation. And by the way, I manage not to think for maybe 5 seconds at most. But I can repeat that 3 seconds later. With practice, I’m extending that period of time. I never though it could actually change so much things in my life. I’m really surprised.
Of course, I also do visualization where I see myself healthy and I pray the Universe for everything to go well. I believe the Universe is alive. Maybe I’m just a weirdo, I don’t expect anyone to believe in that. True or not, It does give me great hope and confidence for the future I’ll have to say.
1 Like
I had to take my second semester off because my symptoms got much worse after using benzos for two weeks for insomnia, and this semester I’m only registered as a part time student, and even then it’s far from easy.
I have to be careful to avoid my triggers such as lifting weights or eating the wrong foods or I get worse.
This summer, I inexplicably deteriorated. My mouth tasted strange and was dry, I had a lot of trouble sleeping, I felt derealized, anhedonia and depression had hit the point where I was willing to let a doctor persuade me to take antidepressants (with the thought that if things got better, they did, and if they didn’t, I could kill myself), libido and all that stuff suddenly went again after improving for a few months, if I took medication that previously helped me it either didn’t do anything or barely worked.
I don’t know what the average user’s symptoms are here, but I know this syndrome varies in intensity. I’ve been on the milder end of the scale when I took SSRIs when I was 15 and got some numbness and a weird change in my libido that never really corrected until my first time using Finasteride. After that, when I got PFS for real, it was horrible. I genuinely don’t know how I survived the first 3 months because the depression, anhedonia and derealization was so severe. There were points I felt so heavily derealized I couldn’t remember where my house was while being in a spot 5 mins away that I frequented. I didn’t catch a break from alcohol or anything like that, and I had a few decent hours a month (where I could browse and read reddit, etc.) rather than decent days. That turned into decent days over 9 months, and then worsened again after I had a concussion. Then it improved 2 months later after I took Vortioxetine and crashed. In fact, everything improved, from mental symptoms such as depression, anhedonia, insomnia and lack of response to drugs, to sexual ones such as sensitivity, morning wood, libido. And that improved well after the drug was out of my system, and although I only took two doses. So I understand the position of something needs to be done right now. I’ve been in that spot too. And it seems like I visit it every couple of months one way or another, and when I’m there I can’t possibly comprehend waiting another week, let alone another year.
I suppose what I’m trying to say is that I’ve experienced many ends of this syndrome, so none of this is coming from some sort of survivorship bias. I’m not the worst, but I definitely am not as good as some people here who have some minor changes that they can’t come to terms with.
3 Likes
I’ve never felt completely normal throughout all of this. The derealization has never completely gone, or maybe it’s another symptom but I can’t tell why the world and life just doesn’t look normal to me.
When the depression isn’t at crash levels, something that really bothers me is my cognitive impairment. I used to be very gifted academically and had the best memory of anyone that I knew. I simply just did not forget things, I thoroughly enjoyed learning things, developing new skills, etc. and was good at pretty much everything I did that required me to use my brain. Right now I struggle to understand things I did when I was in high school.
I also used to work out 6 days a week, lifting for about an hour and a half and either running 5k or swimming for 30 mins. Now I can’t even try to for an hour, or it’s a week of depression, anxiety, genital pain, insomnia, etc.
And I was on the verge of launching a start up that I’d managed to arrange a couple thousand dollars in investment for by the time I was 18. Now someone’s gone ahead and done the same thing, and he’s done very well for himself so far, so good for him.
These are the things that bother me when I can afford to be bothered by them. Sometimes none of it matters at all and PFS just takes over all of it, but it took away a lot from me. I don’t know if I’ll manage to do well in college or even get through it, and I just live day to day with no real pleasure.
5 Likes
Before visiting this forum I thought pfs was a simple hormonal imbalance. Is there hope? Many years will pass and we will age …
1 Like
Focus on what you can do, now.
Our guide has actions you can easily and quickly undertake. You’ve done the survey, which is fantastic. Have a think on whether there’s more you can do to help yourself.
The faster we all contribute - the faster our escape!
1 Like
It is a fact that multiple people did recover from the Syndrome, many accomplished very substantial improvments - this tells that this IS reversible and thats important - so there is hope. But hope is unfortunatelly very easily lost inbetween all the things that are going on in forums and groups daily and is easily missed in everyday noise. Hope is already out there but it doesnt mean things are easy or quick to move or in some universally applicable fashion, things can also get a lot worse mostly with many quickfixes out there since lots of facts about this condition are not yet known and cases reactions differ often dramatically. In this aspect its better to keep safe and stay away from quickfixes - to not make things possibly really bad. But pure scientific answer to this condition is going towards our direction too, things seem to move rather than to stay static in this aspect lately and by everyone doing their sufferer duties will only speed things up, not slow down, so thats the right thing for everyone to do now. Keep Your head up and do not ever lose hope, there is hope in many forms in our favor
1 Like
I also believe that side effects are reversible. pfs is a very complex equation. But our arms are getting longer. We will surely reach the answer. But what makes me sad is not the possibility, but the time itself. Time passed and youth cannot be compensated by anything. I’m sad about it. It’s like my two years lost in military service.
3 Likes
I understand and feel what You say really well… There is unfortunatelly some lost time included in all this, but my opinion is that its not completely lost time. The compensation for that time is the mounting quality and appreaciation of all the everyday life things one will have once he/she recovers anything back. Its like if You gave the ability to walk back again to a person on a wheelchair. No healthy person will be ever able to appreaciate the ability to walk like the one who lost it and gained it back again. Its similar in paralell to us, for each sufferer it may little differ on what is missed the most. And time plays a very huge multiplier in that future appreciation - so the compensation will be in the great quality of the time back with the abilities - otherwise unreachable quality - thats my opinion and how I view and feel it.
Yes but the chronic sufferers most likely wont make huge improvements after a certain number of years has passed, so they are in need of a medical intervention.
That medical intervention is probably at least 2 decades away. Nothing can convince me that 2 decades or more of lost time can be compensated by what you describe above. Lets be realistic about this.
People waiting for a cure is dangerous in and of itself, if this waiting hinders them psychologically from moving on with their lives. Again, do not “wait” for a cure, as the waiting time will be much longer than many expect here. Its will be measured in decades not years.
1 Like
It’ll only be as long as people want it to be, if we sit here moaning and groaning about low long a treatment will arrive it’ll never happen we all need to do our part. I’m in the midst of doing a video that I believe will bring significant attention to this problem. I also believe that we should absolutely have a Facebook page it wouldn’t take anything away from this website but connect us all better with sufferers. I’ve had various people contact me through Facebook I don’t see why we should limit ourselves to one page when there is billions of people connected to it.
2 Likes
No. It will take a long time no matter what you do, if you define 20+ years as long. The best thing each sufferer can do, is take care of himself first, and to pursue if possible his career and earn an income. If he is back on track he can worry about helping the foundation through donations.
Remember, the most important thing the foundation needs is money, not youtube videos. I wish people would realize the complexity of the problem, and then act accordingly. Throwing money down homebrew rabbit holes certainly wont help and hasnt helped.
1 Like
Yes it’s going to be a long road nobody is disputing that but we’re all prolonging a treatment by sitting behind these keyboards doing nothing I’ve heard people say about my video “oh, I wish I could have done that” well do it then there’s no point sitting there yapping about it and expecting results to show from thin air or being depended on a few individuals- every man needs to do their part simple as that. Everyday for the last few months I have been contacting professors, newspapers and media although I don’t get much if any reply back at least I’m trying.
Youtube videos bring exposure with exposure Merck and Co’s credibility takes a hit if a product is starting to get a bad rep then it starts affecting the stock price and that’s what we want. For now Post Finasteride Syndrome is in the shadow’s and the majority of the world haven’t a clue what it means.
There is potentially thousands of men out there with this condition that haven’t linked their sides with the drug this is why exposure is of critical importance I just met a women today who told me her Dad was taking it as well as another man who told me it was safe.
1 Like