My story is similar but more involved then the average PFS case. I have been suffering from PFS for ten years. First and foremost 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….
