First , i’m really sure this syndrom is not about androgenes. why? Because i read a lot of topics about rarely side effects.
Lıke urine frequency, dark vision (like me), hypnc jerks (not same insomnia)…
I read all hormonal imbalance article on the net.
And they dont cause a dark vision.
I mean hypotalamus = hormone management + vision issue.
Hormones cause blury vision but they dont cause dark vision.
And we are sufferıng side effects which are unconnected each other. Tinnitus , shrinkng penis.
They are all go a single door: hypothalamus
and lets talk about numbness penis, hand. Cmon guys not a sıngle hormone can cause this.
Yes we are having hormonal ımbalance but thıs ıs cause of hypothalamus damage.
And finally, we are all changed in a short short time period, our physıcal sexual and mental changes was dramatic and very short time period.
A hormonal ımbalance doesnt cause thıs change ın a short perıod, ıt needs to be ıncrease or decrease for a long tıme.
But ı watched braın damaged peoople, all of them changed ın a shot term perıod.
And one more thıng thats why we are often a normal hormonal ranges but sıde effects remains. Beacuse some part of hypothalamus doesnt work anymore.
So we need to focus repair our hypothalamus, not repair our testesterons, estrogen etc…
of course the hormone imbalances are of secondary nature in pfs. The primary damage is likely located somewhere else, maybe at cellular level, or in the brain (neurological).
But if you think about it living with pfs is like living without primary hormones, testosterone and thyroid. All side effects attribute to these hormones.
Bloating, decreased temperature, fatigue, weight loss/gain, hairloss in the body, memory loss, sleeping issues are thyroid related.
Loss of libido, muscle waistage, keeping your hair, fatigue, depression are testosterone related.
interesting theory. i wonder if just taking something as simple as a hypothalamus glandular would help in this case. op, you should consider this if you really think this is the root cause. it would be an interesting test and i don’t think this could hurt.
Main thing we can all do is donate to the PFS Foundation and participate in studies. This way we can stop speculating and focus on the real situation. Let’s avoid distraction from this.
I agree there is definitely a cognitive decline with PFS, and this has been the most difficult part of my recovery. I’ve been in recovery for 4 years, just starting year 5.
So… what I’ve done to manage the brain function recovery:
Lions Mane 3grams daily
Omega 3 fish oil with the right EPA/DHA balance and high quality
Exercise- weights and cardio
Vitamin B6, B12, Folic Acid, Alpha Lipoic Acid
Protein shakes with BCAA’s
Brain Training on Lumosity daily
Fasting intermittently http://www.thehackedmind.com/the-ultimate-guide-to-intermittent-fasting/
Avoiding wheat gluten, sugar and carbs
And lastly, getting plenty of sleep by using Melatonin, Magnesium and Celtic Dreams (Allopregnanolone).
The only other additions I’ve made lately are Progesterone and Hydrocortizone daily.
I’ve noticed quite an improvement in my cognition, clear thinking, motivation and general sense of feeling better. The results from Lumosity show proof of improved brain function over time. They chart your results and measure improvements.
depressedguy, i completely agree with you… My problem with frequent urination made me think hypothalamus/ pituitary is damaged… And then only recently i realized almost all of my symptoms could be explained by this. Trouble sleeping, anxiety, increased appetite, sexual sides (high prolactin, low lh and fsh) etc… Maca root helped me, my urination and appetite normalized and i felt improvement in other areas, but deficit of sleep and high stress causes return of symptoms. It seems like maca just can’t repair whole damage and i am thinking about ordering hypothalamus glandular…
Allen at the Harvard study told Adam that he didn’t think this condition was permanent. I just found this article about repairing the hypothalamus at the cellular-level at Harvard. Could this be what he was alluding to? I know most of us would sign up for human trials right away.
http://news.harvard.edu/gazette/story/2011/11/rebuilding-the-brain%E2%80%99s-circuitry/
Our cognitive problems are verly likely due to lowered neurosteroids. This problem is not that complex. Most have agr eed lowered allopregnanolone causes our cognitive symptoms. In fact, I personally am releived of cognitive problems on zoloft. Most likely due to it increasing allopregnanolone which is proven.
Not that allopregnanolone is the only neurosteroid implicated.
Just a note hypothalamus damage may cause hair texture changes too.
Interesting you should mention this. I was just thinking the other day about how every time I’ve had a really good temporary recovery, like with full mental abilities and the mind/penis connection back, I’ve always had my sense of smell return. PFS has greatly reduced my ability to smell and have memories triggered by smells.
Googling any disorders of smells, I came across Kallmann syndrome, where one doesn’t have or loses sense of smell due to hypothalamus problems.
anyone try that hypothalamus supplement? Sounds too good to be true.
Anyone else try Zoloft? Does it help with sleep also?
SSRIs (antidepressants like Zoloft) have been shown to upregulate levels
of progesterone and allopregnanolone (THP) [PMID 12957330] as well as
neurogenesis [PMID 14872203, 15001810, 14512209]. In animal models it¹s
the hippocampal neurogenesis that accounts for the behavioral effects of
SSRIs [PMID 12907793]. Conversely, inescapable stress which reduces
hippocampal neurogenesis also causes depression [PMID 12838272].
Isn’t this glandular stuff (iherb.com/nutricology-hypoth … caps/16690) supposed to do something similar …?
So if it’s not hormonal you can get jacked up like a bodybuilder? Your shedding hair like before from all the androgenic activity in your scalp?
Is there actually anyone on here with decent amount of muscle mass. Prove me wrong - because as far as I can tell it’s next to impossible with this condition. And that is only possible due to an absence of androgenic activity, whether primary or secondary.
I’ve been on supraphysiological doses of testosterone for a two months now and have gained fuck all. That is not normal - and I don’t accept it’s because of a neurological fault.
with this condition gaining muscles is almost impossible. I used TRT and got some muscles but soon water retention was so high that I was not able to walk, water in my legs, chest and belly was killing me. I had got rapid weight gain. There is some counter force is working in our body. It works against us now.
I know a guy who has six pack with pfs, i cant share his photos though. And my hair is shedding like crazy, 100 per day. You guys are thinking muscle atrophy is only hormonal problem. Google it kennedy disease. You will see muscle atrophy as one of the symptom.
i am in the BB field since 14 years old, so i know my body .
before pfs it was very easy for me to gain muscle , and not yes it is almost immposible, i gain more fat than muscle even with perfect diet.
and my hairloss is stronger than before pfs, it should had be the opposite.
so yes i think this is something hormonal, with the adrenal involve( don’t know if main problem or just secondary)
I took glandular for about 2 weeks and noticed no change. But I’m going to start taking it again.
Maybe you ueed to take it for months not weeks to get any benefits from it ?
It is very difficult for me to gain any muscle. My body is mostly pudgy now. If I’m on a strict diet, I will get skinnier, but overall there is no definition to it.
During the best temporary recovery I’ve ever had that lasted maybe a week, my body just felt totally different. It was almost like I could feel the fat burning around my stomach. My muscles just started craving exercise and weights. Every step of running, it’s like I could feel it more than before. And even after just a session with weights, I could tell muscle was building. Of course when I crashed, everything went back to how it was before.
Has anyone gone to see an actual neurologist about possible brain damage or malfunction? I’d be curious what they could find, but they probably wouldn’t investigate if they couldn’t find any evidence of damage.
For me, I have been Obsessive/Compulsive since I was a kid. I took a low dose of meds since I was 19. No matter how low the dose got, I would still never be able to abandon it completely. I would get anxiety in the pit of my stomach, wouldn’t be able to sleep right, would get bothersome obsessions and depression. What’s funny is ever since pfs started, i’ve felt nothing concerning my OCD. No anxiety, no symptoms, no feelings. Haven’t taken meds or needed any since before my crash. The obsessions and anxiety just aren’t there. Whatever happened to me is like the opposite of that disorder. Whereas I had trouble processing disturbing thoughts and not being able to help feeling the anxiety at all times of day, now I mostly just can’t feel anything. Always thought that pointed to a neurological problem.