My Recovery and Neuro-Biological Disorder

Therapeutic Efforts
#44

Hey, thanks for the response.

I wonder if there’s a way others in this forum can develop such regiments for their own personal conditions.

I feel like this drug is affecting everyone in unique ways. It seems our best shot for now is trying to combat the symptoms directly by coupling it with some real scientific direction & analysis.

Then may be we could have different “potential” treatments for our members here based on the different sides they were having. I.e. sufferers of neural sides could try certain supplements & treatments, and sufferers of sexual sides could try certain treatments.

Do you have some suggestions for tests & lab others can run for other bio systems like autoimmune system, hpta, prostate, hormonal balance, etc?

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#45

I wonder how much of your recovery was strictly because of time passing though

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#46

Or fasting. Eating only once every 22hrs. What would happen if the op went back to a regular diet?

#47

The best way to be sure if someone has pfs is to check for the following symptom: derealization. If someone has taken propecia and has this symptom he surely suffers from pfs. If i just had low libido and anhedonia i would blame my problems androgens. It is the high prevalence of this incredibly rare disorder between pfs sufferers that makes sure that problems where created by 5ar inhibitors. Brain fog is a very generalized term that can mean dysfunction of many several parts of your brain and can lead to diagnoses of many neurological diseases. The term derealization or altered state of consciousness points to the dysfunction of the Reticular formation as the author describes that is also responsible for libido. While i was seeking for answers i tried to think not which area of the brain is dysfunctioning but what drug can cause derealization. I found that ketamine and dissociative causes anhedonia, numb emotions. What is ketamine? An nmda receptor antagonist. Unfortunately most effective nmda receptor agonists are neurotoxic. And how can this be connected to DHT and 5ar? https://academic.oup.com/endo/article/146/4/2091/2879093 . This study study showed Dihydrotestosterone Increases Hippocampal N -Methyl-D-Aspartate Binding But Does Not Affect Choline Acetyltransferase Cell Number in the Forebrain or Choline Transporter Levels in the CA1 Region of Adult Male Rats. I dont know the relevance of this study, but i always found it interesting, thisisarealbummer could you shed some light?

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#48

Hi–
I think time passage is not relevant here; as I said in the post, I had middling progress for my initial 8 months of PFS (even while fasting) and experiencing w/ various treatment methods. The real windfall and progress came roughly 2 months ago when I geared my treatment towards chronic ALLO tolerance and its various ramifying effects (namely depressed mRNA expression of extra-synaptic δ subunit-containing GABAA receptors and likely receptor desensitization as well). Fasting has been a contributory aid given all the benefits I had listed (increased BDNF, NGF, attenuated cytokine production, and general neurotrophic factor up-regulation) , but is unlikely to be the sole reason for progress given my prior poor management trajectory.

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#49

Yes-- I’ve actually read this study. I’d draw a distinction between derealization and anhedonia and would further note that is a tenuous link to subjectively think of drugs that seem to catalyze some nebulous feeling of disassociation. In my personal experience, perceptual derealization was a strong component of my symptoms (related to disinhibition of GABAergic relay neurons in the reticular formation), but I have not experienced typical anhedonia. As you’re aware, we all have comparatively different manifestations of symptoms.

The case of NMDA antagonism is a complicated one as these glutamate-activation ion channels are necessary for proper neuronal functioning but can induce toxicity when over-activated. On one hand, depressed conductance of Calcium ions can be beneficial in reducing neuronal hyper-excitability, but on the other, Calcium ions and CaMKii are necessary signal transducers and phosphorylators for maintaining cell surface expression of GABA(a) extrasynaptic receptors.

In my view, Mg supplementation may confer some of the benefits of NMDA receptor antagonists as it is a competitive channel blocker at physiological conditions that is displaced when glutamate binding affinity rises, but even this is problematic as Mg is necessary for cAMP by adenylyl cyclase (which foments excitability through secondary signal transduction). Here is a recent, great study that on that: https://www.nature.com/articles/s41598-019-53087-4

Unfortunately I think you’re largely barking up the wrong tree with a focus on NMDA receptor, though reducing general neuronal excitability could be a benefit to many of us.

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#50

I never took finasteride, my body naturally has low 5ar for some reason which was propably induced later in life (since i would have been born an intersex otherwise and not a hairy man). My derealization feels like im permantly stuck in a jumpscare or in that moment when your attention is shifted from on thing to another (this is how i described my derealization even before i learn that this is what the recticular formation does, so mine must be hyperactive?), watching the world behind a glass or feeling my body as automated. I also have a small intensity temporal lobe epilepsy, my neuro said it cant cause seizures but he and the neuro that did my exam were frustrated when they saw my EEG. Like something is unusually wrong. I take lamotrigine and i no longer feel dysphoria. I think that my treatment should combine both raising 5ar ( i may have low 5ar due to low cortisol) and anti epileptic treatment you proposed. I have read that many of these 5ar hormones are anticonvulsant and neuroprotective, also found a case where a hirsute woman improved her epilepsy by stopping 5ar inhibition. You said something about epilepsy mimicking your condition can you explain? What should i tests should i tell my doctors to do? THANK YOU FOR HELPING US ( excuse my english, much love)

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#52

But, what is that treatment based of? I only read about one pill…that’s it?

#53

Look i think if someone has altered consciousness problems and messed with 5ari it is 99% possible that these consciousness problems are due to the 5ari. Thats because a very very small group of the general population may suffer from these problems but a large ,maybe the majority, of pfs patients suffer from derealization. So there is a very strong correlation and it points to reticular formation dysfunction. If you tell a doctor i have brain fog, thats very non specific, it points to many different things. I also makes our condition more believable for scientists. Now they may think that a group of people that had problems with life, gathered on a site and started blaming 5aris. But it would be much more easier for the scientific community to believe that some ex users of 5aris have very unique common symptoms and this cant be unrelated. Thats why i think derealization should be added on the symptom list. Emotional disconnection for me is a symptom of anhedonia combined with derealization. I would say more like spatial anhedonia. I cant feel the emotions that our spatial circumstances cause. For example I dont get the feeling i used to get when a cool breeze blows my face during a hot summer night, lying on the grass, when the sun shines after rain, the way dirt smells after rain, swimming at sea, feeling cozzy at home wherever i am it feels the same. Seasons are more like variations in temperature, humidity and sunlight for me now. So yes, me, you and many others have this tinted glass problem, yes i cant perceive my surroundings, i cant really find the words for this feeling. A lot of people say my environment seems fake because this is a very good way to explain to non patients how it feels. I may understand what you mean when you say i cant perceive things but a neurologically healthy person wouldnt. This feeling cant be put in words but some approximations can be made, an umbrella term could be altered state of consiousness.

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#54

Agreed, but most pfs folks DONT have this. Trust me if they did, this would be the symptom they would talk about most. I have the others as well, but this is my priority (I don’t have physical ones that I know of, and I know those can be worse) but if you search this site like I have, most do not have the altered state of consciousness or we call it “the cognitive shift”

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#55

If you ask them what their brain fog feels like they will probably tell it feels like watching myself from outside. My doc described that a partial epileptic seizure can looks like watching yourself at third person. I told him that i have this persistent feeling like watching the world through my eyes, first person view. He said ok this could be possible too, except that seizures always appear periodically while my feeling is persistent. I don’t know if the people who have the third person view use this for a lack of better words and maybe they mean the same feeling as ours. Maybe an epileptic seizure can’t directly cause this but it can indirectly influence our Gaba receptors as thisisarealbummer said. The mechanisms are too scientific for me to understand but you know before 3 years i thought that testosterone is a male pheromone and now i know what every hormone does.

#56

I’ve been reading your thread. It’s very intriguing. I was looking at the Nootropic Depot website you suggested for buying Bacopa, and I couldn’t find any product that has a total bacoside content of 55% of the extract, by weight. I only saw the 300mg tablets with 24% Bacosides. Could you possibly tell me the Bacopa product you used on that website? I would also really appreciate it if you could tell me what turmeric and bioperine products you bought as well. Thanks.

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#57

You know man when i was watching the Pirates of the Caribbean Curse of the Black Pearl as a kid, I was impressed with the fact that the cursed pirates of the Black Pearl were desperate to return to their mortal life despite them been made immortal and undefeatable by the curse of the Aztec gold. Unfortunately i after i got pfs i got to understand their decision. And i quote the captain of the cursed ship, captain Barbosa:

“I feel nothing. Not the wind on my face nor the spray of the sea. Nor the warmth of a woman’s flesh. You best start believing in ghost stories Miss Turner. You’re in one.”

Just replace the word ghost with pfs.

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#58

Perfect explanation

#59

@thisisarealbummer – Congratulations! And thank you for coming back to describe your journey and (detailed) research.

I’ll throw in a clarifying question – I would take this to mean that you did not try to increase ALLO in some way? I’ve been thinking of trying substances to increase it, like 5a-DHP. It seems like that, for you, that would’ve been the wrong approach, and that focusing on GABA receptor upregulation “directly” was the key. Do you think increased ALLO will lead to further downregulation? Am I even understanding this correctly?

#60

Thank you so much for the post. I took bacopa for the first time yesterday resulting in a high histamine response along with a headache and orientation problems. Followed by the usual insomniac night. My day started in the usual terrible way. I never get a reprieve from my symptoms, they have just got worse over the years. Here’s the funny thing as the day has progressed I’ve noticed my limbs aren’t cold, my mood has improved to a degree, my skin doesn’t feel as dry, my gums aren’t sore "I have recession across the full gum area. My cognitive function has improved slightly, eve. My anxiety has moved to a manageable level and my eye sight isn’t as blurry. I feel hope for the first time. It’s worth noting that gaba itself and turmeric have worsened my symptoms so this is unexpected. I’ll continue to update

#61

FYI. Bacopa Monnieri contains Beta Sistosterol a DHT Inhibitor…

#62

Yes indeed i found that bacopa can be used as antibaldness and for prostatic hyperplacia. But thisisarealbummer used it mainly for neurological treatment. Also note that he had tolerance to allopregnanolone while it has been found that some people have simply low allopregnanolone. I wonder if its possible that he is up regulating his allo receptors by inhibiting his allo production with the 5ari action of the supplement .

#63

So maybe he just improved due to the dht inhibitor…

#64

Yes and the benefits are temporary until he stops taking it.