Story of 5 Alpha

I was asked to post a member story. I will be brief because I have been a member for 8 years. My original member story can be read here: newmembers horrorstory. no symptoms until4years after avdort

I took Dutasteride when I was 22 years old. I did not get PFS but I suspect the drug damaged me.

I took Saw P when I was 26 years old and got PFS.

I took Saw P again at 29 years old and got much worse.

The symptoms I got from my first Saw P mishap were as follows:

Erectile dysfunction
Sexual anhedonia
Shrinkage of genitals

The symptoms I got from my second saw P mishap were as follows:

all of above mentioned symptoms got worse
severe digestive issues
severe insomnia

Things that made me worse:

Aromatase inhibitors
Licorice extract

My goal:

Figure out the underlying mechanism of my imbalance and correct it

Similar story here. Accutane after university many years ago reduced libido considerably but always assumed it must be something else like stress or girls in new location just not as attractive as in previous, struggled to maintain relationships because of lack of sexual spark. Took Trazadone 6 years ago and had zero libido or sexual sensation since.

Waiting for day community realizes it needs to organize to do public outreach and facilitation of research. Hopefully it won’t be another 15 years of people trying same failed pills and herbs pills and herbs over and over before we start to make progress.

At least time is on your side. If it takes another 15 years then you will still be young enough to get married and have children.

sorry to hear of your experience

so the Trazadone made all your sides worse?

It’s a serotonin antagonist and reuptake inhibitor

What testing have you had done?

Sorry to read you are also hurt by this corrupt pharma company. Do you have any further mental sides? Hows your energy? do you still struggle with insomnia?

The second time I took saw P at age 29 it caused very severe insomnia. I stayed up for 6 weeks with zero sleep. I ended up being hospitalized and docs thought I had a very rear condition that prevents your brain from “turning off”. The six week total insomnia binge ended with a 45 min nap. I was eventually able to sleep for up to 5hrs at a time. With glycine and magnesium I got back to almost 8hrs of sleep. But it’s not 8 restful hrs of sleep. I cant remain in those deep stages of sleep for extended periods of time. If I discontinue to the glycine and magnesium I drop back down to 5 hrs. So in a nut shell now at 36 years old I range from 5-8 hrs of sleep but stay in bed for longer to get rest. A best case night for me is 8 pretty good hours of sleep plus lay in bed for another hour or two sometimes even longer going in and out of light sleep.

I never got mental sides as far as depression goes. But I also don’t believe in depression. I mean have I been pissed at live over the last 10 years? of course who would not be but I don’t view this as “depression”. In my mind it’s just being pissed because life is shitty if that makes any sense. Anyone would be so thats my take on depression. Also the thing of it is in this department it’s hard to say for sure if I got no mental sides because i was born with dyslexia so my mind was kinda “fucked” before I even got PFS haha. At times over the last 10 years I could said that it feels like I get more dylexia type symptoms but this could just be in my head so I’m going with no I don’t get any mental sides.

My over all energy was reduced but I corrected this through the CDnut’s protocol. I recovered the shrinkage through the CDnut’s protocol. I did not correct the ED, lack of brain-dick connection and lack of orgasm through the CDnut’s protocol through.

I did several cycles of DHT pro hormones. The first couple of cycles I got minor improvements in the ED type sides but the results did not stick. Subsequent cycles of DHT prohormones had no affect on these sides . I did several cycles of 5a-DHP. 5a-DHP concerts to alleopreg via 3a-HSD. My first cycle of 5a-DHP I got minor improvements in the ED sides to a degree similar to my first DHT pro hormone cycle but could not replicate with future 5a-DHP cycles.

I almost cured my self with mifepristone one time as well. I recovered all of my sexual sides to 80 percent for 5-6 weeks following taking 50 MG of mifepristone for three days. This is dangerous and very experimental though so I don’t recommend any beginners try this. Save it for a last resort approach. It can make you worse. I did several more experiments with mifepristone and could not replicate that first near recovery.

hmmm what else…

I get worse from taking armostase inhibiters (inhibiting estrogen) and also get worse from licorice which is inhibiting the enzyme that converts cortisol to cortisone. It’s a regulatory enzyme of cortisol to make sure it’s not getting too high. Cortisone is inactive and cant bind to the GC (cortisol) receptors.

So my theory is that we fucked up when coming up with the term “PFS”. Not so much the term but the way we applied it to everyone. I think we are all different. For example if you inhibit estrogen and you don’t get worse you do not have the same imbalances that I have. My 3b-diol is flagged low in blood. Yours may not be. So I don’t think a one size fits all treatment will ever exist for these problems

great to hear you improved your sleep! Yeah, the crash time must have been scary shit, i had it too with daily most of 1-4 hours for around 4 weeks. It was hell. Fortunately my sleep duration returned to normal, yet due to frequent urination I have to interrupt each sleep 2 times. And I feel like I never refresh from a sleep. since PFS

That sounds like a nightmare . What did they give you in the hospital for sleep in the end ? Did they think you had the fatal insomnia condition which is a rare prion disease??
Glad you are feeling better , I have considered using glycine , did it work straight away ?

haha yeah this is what they thought I had because in spite of what they gave me I would not sleep. I was scared. Mainly of the suffering of how long that would have taken to kill me. It was very painful. My brain hurt and I felt horrible anxiety that’s the only way I can really describe it. I’m pretty sure they were giving me high dose benzopins. That first 45 min sleep was a godsend

I get up 1-2 times per night to urinate currently. I still don’t feel really refreshed ever really from sleep. But I have still come a long way in this department. Gylcine and magnesium have worked well for me. It can take a few nights for it to start working. During my first cycle of 5a-DHP I I felt like I was getting better sleep. Leads me to suspect depleted metabolites. I know i’m low in
3b-diol so I am trying to source it and take it it to see what it does

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The glycine and magnesium combo worked for me

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which type of magnesium?

Oh yes , that must have been terrifying for you . Insomnia has been one of my main symptoms and although it was not as extreme as what you had I heard about that rare illness too and was scared for a minute .
Did your insomnia come on suddenly ? Was it after you quit Saw or while still on it ?

Mine has improved over the last 8 weeks and Amitriptyline really reset something for me in the brain but I have suffered for nearly 11 months with a bad sleep disorder now , it was 4 hours on average but some nights would be laying awake till 6am and sleeping till 8am with the poorest quality sleep you can imagine .
6 weeks no sleep is beyond extreme and the fact that the hospital saw with their own eyes that benzodiazepines were doing nothing for you (and they even considered the rare illness means they were concerned) did they give u some kind of diagnosis or some prognosis for what was causing the insomnia ? What do you think causes the insomnia as a strange side affect from 5ARi medications ? Sorry for all the questions , I’m just seeking the answers myself!

Yes I would think all of this was total nonsense and the ramblings of a bunch of internet hypochondriacs, but the timings were unmistakable. Large step changes in sexual symptoms contemporaneous with each drug and also brain fog for about a year after the Trazodone. I’ve tested everything under the sun, done TRT, even had back surgery for a disc in case it was involved, every herb and pill that’s come up here, many endos, sexologists on two continents, read probably a hundred papers on everything from neurosteroids to shining lasers on dick to reverse PSSD.

Our problem at this juncture is that the community at large suffers from the Dunning-Kruger effect and overestimates it’s potential to find a cure itself via Google and Wikipedia alone. It also suffers from an assumption that just because what’s happened to us isn’t fair then someone will automatically rescue us.

No one will rescue us because no one has an incentive to. I believe a precondition to our getting a cure is to shoulder the burden of making a cure happen ourselves (i.e., as a community) by getting organized, doing public outreach, advocating for our cause in an impressive manner, and pushing scientific interest in our case.

One day that will have to happen, but I don’t know how long it will take for a critical mass here to own up to the reality.

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See Ozeph for a member who has been successful for a long period of time at alleviating insomnia problems.

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Magnesium citrate

My story is similar but more involved then the average PFS case. I have been suffering from PFS for ten years. First and foremost due to the adversarial nature of this website its important for me to say that everything I am about to share is specific to my own imbalance and disorder. None of what I am about to say is for the purpose of trying to explain what PFS is or how to cure it. It’s simply a general explanation of my own experience.

I took Dutasteride when I was 22 for prostate enlargement for one month. I got zero side effects while I was on it or when I came off of it

I took Saw P when I was 26. The Saw P was included in a “testosterone booster” supplement from GNC, which I was unaware of. Even if I knew Saw P was in it this would not have mattered because at the time I had no clue what PFS or Saw P was anyway.

This supplement also included a natural aromatase inhibitor. I took this supplement simply because I was looking for better performance in the GYM. Very stupid…

I got all of the PFS sexual sides two weeks after starting this supplement. I got no other PFS sides at this time. I had no clue why I was suffering from the sexual sides or what PFS was at this time.

At this time basic hormone testing showed the typical PFS “steroid axis crash” with low Total T, Free T, LH and FSH. I went on Clomid in an attempt to cure the unexplained low T and sexual sides.

The Clomid raised my total T above the reference range, did not help any of the sexual sides, did not make any of the sexual sides worse and did not give me any other PFS symptoms.

After three months of being on the Clomid my estradiol also increased above the reference range. I went on a prescription aromatase inhibitor, which immediately made all of my PFS sexual sides worse. At this time I still had no clue what PFS was and stayed on the Clomid and prescription aromatase inhibitor for two years.

Eventually I came off of the Clomid and prescription aromatase inhibitor and my Total T, Free T, LH and FSH all crashed again. However, the T, LH and FSH increasing and decreasing had zero impact on my sexual sides for the better or worse.

The only thing that clearly negatively impacted the sexual sides hormonal wise was the decrease in estradiol from the prescription aromatase inhibitor while on the Clomid. The PFS sexual sides stayed this bad and did not get better on their own after coming off of the Clomid and aromatase inhibitor.

At age 29 I was still going to every doctor imaginable trying to fix myself while at this time still having no clue what PFS is. I ended up at this urologist who checked my prostate and thought that it still felt enlarged from my prior days of prostate enlargement when I was 22. He thought this this was the cause of all my unexplained sexual sides and recommended that I go on Saw P.

I followed his advice and went on Saw P for two weeks. While on the Saw P all of my sexual sides got even worse. But this time I also developed severe constipation and insomnia while on the Saw P. I stayed up for six weeks with zero sleep and lost twenty pounds of muscle.

During this time I discovered that I previously took saw P in the supplement when I was 26. I connected all the dots, found this website and this is how I learned what PFS is, that I had some version of it and what caused it in my case. Unfortunately by this time for me the severe damage was already done.

The ER doctor (that I seen toward the end of my six weeks of total insomnia when I was 29) mentioned sporadic fatal insomnia as a very unlikely possibility but no follow up testing was ever done because shortly thereafter I started sleeping. Fatal insomnia never gets better, never lets up and eventually kills you so obviously I did not have this.

Because know I knew about this website and what PFS was I went on the CDnut’s protocol and over the years my sleep improved to the point where I could sleep for 5 hours followed by an additional 3-4 hours per night. The CDnuts protocol eventually cured my sleep to about the 80 percent pre PFS range. The CDnuts protocol also helped my constipation and kept my total T in the healthy range. However it did not cure or really help my sexual sides. The CDnuts protocol did cure my shrinkage though which technically is a sexual side but all other sexual sides remained.

As crazy as it sounds after all these years I have experimented with other dangerous things in an attempt to cure my case. At one point I had a temporary 80 percent recovery in all of my sexual sides from Mifepristone, which is the abortion drug for females. It acts as an anti androgen when we take it by blocking certain receptors. I remained 80 percent recovered in all the sexual sides for 5 weeks following taking Mifepristone at 50MG for three days straight. The sexual side recovery faded until I was back to baseline. I tried Mifepristone several more times after this and it never worked for me again. It never made me worse either.

More recently I tested urine neurotransmitters. I had my first urine neurotransmitter test in July of 2020. I discovered through this test that I was excreting low amounts of certain neurotransmitters.

It’s important to note that urine neurotransmitter testing is not showing your exact neurotransmitter levels in your CNS. However it is giving you a general idea as to how much of each neurotransmitter your body is producing through the various pathways that they are created by in your body.

For 64 days straight I took several supplements daily with the intent to increase production of every neurotransmitter that I was low in. Follow up urine neurotransmitter testing in December of 2020 confirmed that I successfully increased several of the values that I was targeting. During this trial I cured my constipation completely. However this protocol also caused not as severe insomnia but still severe and very similar insomnia that my second Saw P disaster at age 29 caused. Essentially I gave my self “PFS” again by increasing neurotransmitters.

The insomnia started on 11/25/2020. I discontinued all neurotransmitter supplements immediately as soon as I recognized the insomnia. I stayed up for 9 days and lost ten pounds of muscle. Currently I am only able to sleep for three hours per night. I get jolted awake at 3:00AM almost on the dot every night with my heart racing. At age 36 I am currently in the worst physical and mental health that I have been in since my second Saw P disaster at age 29. I fucked up. It’s now about survival again with my focus not on the awful sexual sides.

One of the supplements in my neurotransmitter protocol was SAMe which the ten year PFS suffer and moderator on this website Duyba got worse and ended up in Insomnia from. I speculate that this particular supplement was the cause of my recent “PFS insomnia crash” in my case as well. But it could have also been from one of the many supplements I was taking during this “64 day neurotransmitter protocol”. I will provide more detail on this protocol and what I was taking in follow up posts.

For now I will end with this:

I believe my particular disorder involves estradiol, the estrogen receptor alpha receptor and the estrogen receptor beta receptor. This is evidenced by my pattern of getting PFS or getting worse every time I decreased estrogen over the last ten years. It’s further evidenced by my near recovery on an anti androgen drug. I also believe that most recently I gave my self “even worse PFS” again by increasing neurotransmitters. These neurotransmitters act on certain receptors in the brain in a similar way that certain neurosteriods impacted by 5 alpha reductase inhibition act on the same receptors. This is huge clue here for my own case…

I have more research to do and more dots to connect. But right now in spite of being in a pretty bad state I’m armed with the most valuable information that I have ever been armed with in the ten years of suffering form my particular PFS disorder. I learned that the constipation and insomnia sides in my own case can be significantly impacted for the better and worse by increasing and decreasing my natural production of neurotransmitters.

I am sure most people here can relate but I am now terrified over the possible outcome of adjusting my neurotransmitters because doing so clearly has the capability to substantially impact my PFS disorder for the better and worse by “touching” on at least one of the mechanisms responsible. However, I will be doing it again soon because I am 36 and running out of time to enjoy life. I believe in my case it will come down to making the best educated guesses possible as to which neurotransmitters to attempt to increase in the future.

I believe that I am suffering from allopregnenolone tolerance of the GABA receptors similar to “Thisisarealbummer”. This is evidenced by a recent test showing high allopregnenolone in my urine and the fact that a slight increase in glutamate was seen in my most recent second follow up urine neurotransmitter test that I had done shortly after falling back in insomnia on 11/25/2020.

This suggests that my CNS is unable to regulate a proper inhibitory and excitatory balance. I will explain in more detail in follow up posts. However, this is likely only one of my malfunctions which could possibly explain my insomnia. Increasing natural production of neurotransmitters in my unbalanced state is playing with fire. For this reason 2021 may be the year that I recover or die trying. We shall see….

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Just sounds horrendous mate . I hope you can get some resolve from this , this year .
Do you feel the insomnia is obviously the hardest symptom for you?
It is for me for sure .
I’ve just had a relapse of mine …I have had total nights of zero sleep again …I had 2 nights in a row of this but couldn’t take anymore and had a Zopiclone and got 5 hours after that . I’ve used it for 5 nights in a row now and got between 4-6 hours a night . But soon I will have to taper and who knows then .
The messed up thing is I was doing fine for 4 months just sleeping around 6 hours without aids. It started turning 2 weeks ago and I could feel it coming on again .

It’s horrendous mate , if this carries on I don’t really have any options on what I can do .
No one takes the physicality of it seriously - they all think the insomnia is in my head or some kind of anxiety . It’s the most frustrating part about dealing with it all .

They all suck but insomnia is the hardest for sure. You don’t need proper sexual sexual function as a matter of survival. The constipation is horrible but you can adjust your diet in what ever way you need to to still be able go take calories in and survive

The insomnia is the worst. You have no control over it. In my recent relapse of insomnia I literally experienced my muscles physically deteriorate. I would be in bed at 3:00AM feeling completely physically exhausted and my brain just felt wired. Even though my body was so physically exhausted that my muscles got consumed. This went on for 9 days zero sleep. Now I’m sleeping from 2-4 hrs per night

Do you know what caused your recent relapse?

I increased my natural glutamate and serotonin production without increasing my GABA production evidenced by urine neurotransmitter testing. This is what my second test showed around the same time I had my insomnia relapse. This was my first insomnia relapse in 7 years. If I was a part of a study and you gave me something and I did not know what it was and then I experienced this insomnia I would have assumed you gave me a 5AR inhibitor. So this is what I mean when I say “I gave my self PFS again by increasing neurotransmitters”

Interestingly increasing the serotonin and glutamate also cured my constipation after seven years . Huge find here. What to do from here is a different question…

Hi, about your mifepristone trial, were you cured on it or after coming off of it?

I was cured temporarily on my first mifepristone trial after coming off (on the snap back)

While on it the sexual sides remained but I felt like something was happening even while on it. Almost like an “androgen” feeling in my brain and body even though I was on an anti androgen

In the days after coming off it was all of a sudden a reversal of all the sexual sides. It was unreal . It all faded slowly over a 5 week period . I tried it several more times and could not replicate the experience.

Beware that it has made people worse. It blocks progesterone receptors and GR and AR receptors at certain dosages. I’ll try to post the studies concerning what RU does at different dosages to different receptors

I believe that my particular imbalance involves too much androgens and not enough estrogen. Estrogen is very much involved in male sexual function. I’ll try to post studies. Maybe knowing “which type of case we are” before hand can help minimize the risks associated with trying something like this. For example I’m high DHT in plasma and low DHT in saliva. This could be a clue that possible identifies me as being someone who could benefit from partially blocking AR receptors. Maybe the first time I partially blocked the AR receptors with RU it worked because I now had a proper androgen/estrogen balance hitting the Era,Erb and AR receptors. But then the estrogen receptors adjusted even more in a direction that worked against me. This is speculation though. In my opinion taking this type of approach should be used as a last resort only. So please proceed with caution

Thanks. This is very interesting. Might I know the intervals in which you tried this again? How long between each dosage? What was the longest interval?