21 replies to this topic

[Grey baron]

My Story:
It all started last summer, when I was prescribed finasteride for what my military doctor thought was due to enlarged prostate(given my symptoms, but again I was 21 at the time), took it for 2 weeks stopped as it didn't help urination issues.

2 weeks later:
I was driving to work, when all of a sudden a extreme cloud just came over my brain(thought I was having a stroke), toughed it out and worked till the end of my shift. Did not go away, so I went to the ER, where I was given blood tests, MRI, everything was normal, I was confused how that was possible.

0-5 Weeks after Crash:
I went to the ER over 5 times, cause I knew something was seriously wrong, literally felt like I had a stroke that was just not going away, during this time I had 2 MRI's, EEG, SPECT scan(probably 3 months after), countless blood tests, Spinal tap, EVERYTHING was normal.
Fast forward to 4 weeks after "Brain Fog" Crash, I noticed that I couldn't get a erection for 5 days straight, and was quite worried, no libido, felt like my brain wasn't connected to my penis. So I looked up what it could be, and found propeciahelp, then my heart sank.

7 months in:
It came to the point where I knew I couldn't live like this anymore, and told my doctor that(for some reason as he's the one that fucked me up), they sent me to a Mental Hospital for a few weeks for suicidal ideation. Once I got out my mindset changed, and knew I have to beat this disease some how, and will either die trying to fix it, or fix it.

9 months in:
Here I am trying everything to get better and hopefully one day this will all go away. I have a lot of motivation even though living in this cognitive shift of reality, and have tried so many meds and supplements it's crazy. Below I will share what I have tried that HAS benefited me in some way.

My Symptoms:

Extreme "Brain Fog", feel as if I'm going into amnesia,
Head Pressure
Extremely slow visual processing(almost impossible to explain) "Wasted" Vision
Diffuse Hair Loss(never had hairless before this poison and never would have)
Erectile Dysfunction
Libido Low
Watery Semen(very watery)
Facial changes

What has Helped:

RAW FOOD DIET:
100% Raw Food Diet Has probably helped me the most, start to feel better about 3 weeks into it, lost so much weight and felt tired, so quit because it didn't help enough

Rx HGH:
Gave me almost 80% recovery in ED, Libido,
Helped Energy Levels and General Mood
Cost me $1200 a month

Methylphenidate:
Significantly helps motivation, energy, and wellbeing

Cyclosporine:
Really helps the way food affected my brain fog, vision, ED

Diazepam:
Helped vision and brain fog a lot, actually made amnesia better too

Baclofen:
Helped initially with vision, then made it worse

Modafinil:
Helps me stay awake when needed

Tianpetine:
Helped brain fog, vision

Gabapentin:
Has helped with sleep and head pressure

Glutamine:
Helped a little bit with memory and coordination

Pregneolone:
Helped a little bit all around

PQQ:
Has helped energy

MY THEORY:
1. Finasteride Caused 5AR Overexpression Leading to silencing of regulatory gene
2. Neurosteroids and DHT are significantly higher in selective tissue(when it's in the brain it produces brain fog, insomnia,etc)
3.Neurosterioids such as allopregnanolone are strong NMDA inhibitors(like ketamine,DXM) and GABA agonists
4. This results to decreased LTP and neurotoxicity, low testosterone(NMDA stimulates to make testosterone)
5. Regulatory AR gene is silenced making oversensitive(over expressed) receptors not return to normal.

AR Receptor is the main Gene transcription Modulator

I'm almost 99% positive this is Epigenetic, but it could be somatic



NOTHING has made my direct symptoms better though.

This is so bad it cannot be imaginable to someone that dosent have this condition.

I am NOT depressed, even though I should be, Antidepressants have made this condition worse.



THANK YOU, I love this site and hope to find some good answers here

Edited by Grey baron, 16 May 2016 - 04:27 AM.

[Major Legend]

Hard to suggest anything since you are already on a bunch of stuff - what are your direct symptoms?

[Grey baron]

Thank You for the reply,

Mainly EXTREME Brain Fog, Visual Processing Disorder(Very Dimmed Vision, Slow motion Vision), Head Pressure

Currently all I'm only on cyclosporine for digestion issues, and Ritalin when needed.

When I said nothing helps direct symptoms, I mean I never can get past baseline, it's like a veil over your brain, and it can't get past it, I can only get worse, and supplements only help win motivation, bringing me back to baseline, but I never get passed my baseline symptoms

Thank You

Edited by Grey baron, 16 May 2016 - 01:27 PM.

[Major Legend]

Thank You for the reply,

Mainly EXTREME Brain Fog, Visual Processing Disorder(Very Dimmed Vision, Slow motion Vision), Head Pressure

Currently all I'm only on cyclosporine for digestion issues, and Ritalin when needed.

When I said nothing helps direct symptoms, I mean I never can get past baseline, it's like a veil over your brain, and it can't get past it, I can only get worse, and supplements only help win motivation, bringing me back to baseline, but I never get passed my baseline symptoms

Thank You

 

I had a similar thing where I was in the hospital for a week being unable to walk. Probably something similar along your lines of stroke like symptoms cause by either poisoning or a severe allergic reaction, or some weird form or brain spasm.

 

The things that worked for me are Noopept (Sublingual 20mg) and Lions Mane (1 Gram At Least) (Make sure you get the real aunthetic ones with the fruiting bodies, you will need to research this). And Carnitall from Jarrows. You need BDNF and nerve growth stimulants.

 

Vision wise Astaxanthin helped me recovering lost vision on my right eye. Make sure you get the official brand of it though. My vision actually got better and I had to lower my strength of contact lens.

 

Ginkgo (50:1) Ratio is also good (equivalent 4000mg)

 

Regardless it took me like 1 year at least to start feeling days of baseline, you will get some days that are good and other days that are bad, but as time passes you will get more of the good days.

 

Also another thing that helped me is don't exert yourself, if u stress or push yourself too hard basically the symptoms will return stronger. I have no idea why that is, but everytime u feel the symptoms coming on again, back off, slow down and stop pushing yourself to do better.

 

Diet wise experiment with intermittent fasting or ketogenic type diets.

[Grey baron]

Thanks a lot man, that's a lot of good info

I haven't tried lions mane yet, and I've hard good from it, so I will order that. I'm gonna try asthaxian too

Ya I haven't had any good days so far, just severely bad ones, sometimes it feels like I'm going into a coma, but never go all the way to a coma.

Like you said about being basically parilyzed, I had that for a couple days and luckily it went away, but I still feel awful

Thanks for the reply man

Edited by Grey baron, 16 May 2016 - 06:16 PM.

[Grey baron]

Your very right about this,, even though this is not a pshycological disorder at all, stress and exerting myself does make symptoms worse, especially the headpressure.

Right now all I really care about fixing is:

Extreme "Brain Fog" like Amnesia
Extreme Visual Processing Disorder, like I'm really high on weed, but worse
Head Pressure in back of head


All the other symptoms I can easily deal with, just not these 3

I do fast for 24 hours to 48 hours a week and eat mostly raw fruits and veggies


I still have 100% logic and reason, but it's feels like I'm about to go into a coma, it's So Scary. And it never leaves

Thanks for the advice man,
I will be purchasing lions mane and anasthaxin

Edited by Grey baron, 16 May 2016 - 10:40 PM.

[psychejunkie]

My Story:
It all started last summer, when I was prescribed finasteride for what my military doctor thought was due to enlarged prostate(given my symptoms, but again I was 21 at the time), took it for 2 weeks stopped as it didn't help urination issues.

2 weeks later:
I was driving to work, when all of a sudden a extreme cloud just came over my brain(thought I was having a stroke), toughed it out and worked till the end of my shift. Did not go away, so I went to the ER, where I was given blood tests, MRI, everything was normal, I was confused how that was possible.

0-5 Weeks after Crash:
I went to the ER over 5 times, cause I knew something was seriously wrong, literally felt like I had a stroke that was just not going away, during this time I had 2 MRI's, EEG, SPECT scan(probably 3 months after), countless blood tests, Spinal tap, EVERYTHING was normal.
Fast forward to 4 weeks after "Brain Fog" Crash, I noticed that I couldn't get a erection for 5 days straight, and was quite worried, no libido, felt like my brain wasn't connected to my penis. So I looked up what it could be, and found propeciahelp, then my heart sank.

7 months in:
It came to the point where I knew I couldn't live like this anymore, and told my doctor that(for some reason as he's the one that fucked me up), they sent me to a Mental Hospital for a few weeks for suicidal ideation. Once I got out my mindset changed, and knew I have to beat this disease some how, and will either die trying to fix it, or fix it.

9 months in:
Here I am trying everything to get better and hopefully one day this will all go away. I have a lot of motivation even though living in this cognitive shift of reality, and have tried so many meds and supplements it's crazy. Below I will share what I have tried that HAS benefited me in some way.

My Symptoms:

Extreme "Brain Fog", feel as if I'm going into amnesia,
Head Pressure
Extremely slow visual processing(almost impossible to explain) "Wasted" Vision
Diffuse Hair Loss(never had hairless before this poison and never would have)
Erectile Dysfunction
Libido Low
Watery Semen(very watery)
Facial changes

What has Helped:

RAW FOOD DIET:
100% Raw Food Diet Has probably helped me the most, start to feel better about 3 weeks into it, lost so much weight and felt tired, so quit because it didn't help enough

Rx HGH:
Gave me almost 80% recovery in ED, Libido,
Helped Energy Levels and General Mood
Cost me $1200 a month

Methylphenidate:
Significantly helps motivation, energy, and wellbeing

Cyclosporine:
Really helps the way food affected my brain fog, vision, ED

Diazepam:
Helped vision and brain fog a lot, actually made amnesia better too

Baclofen:
Helped initially with vision, then made it worse

Modafinil:
Helps me stay awake when needed

Tianpetine:
Helped brain fog, vision

Gabapentin:
Has helped with sleep and head pressure

Glutamine:
Helped a little bit with memory and coordination

Pregneolone:
Helped a little bit all around

PQQ:
Has helped energy

MY THEORY:
1. Finasteride Caused 5AR Overexpression Leading to silencing of regulatory gene
2. Neurosteroids and DHT are significantly higher in selective tissue(when it's in the brain it produces brain fog, insomnia,etc)
3.Neurosterioids such as allopregnanolone are strong NMDA inhibitors(like ketamine,DXM) and GABA agonists
4. This results to decreased LTP and neurotoxicity, low testosterone(NMDA stimulates to make testosterone)
5. Regulatory AR gene is silenced making oversensitive(over expressed) receptors not return to normal.

AR Receptor is the main Gene transcription Modulator

I'm almost 99% positive this is Epigenetic, but it could be somatic



NOTHING has made my direct symptoms better though.

This is so bad it cannot be imaginable to someone that dosent have this condition.

I am NOT depressed, even though I should be, Antidepressants have made this condition worse.



THANK YOU, I love this site and hope to find some good answers here

I am surprised you havent took anything related to increasing Testosterone and DHT yet..!

I too had similar (but mild) brain/mind side effects with 3-year usage of Finasteride 1-3mg (due to hairloss prevention) and stopped taking it after a lymph nodes swelling attack..!!!

What cause most of the Finasteride's side effects and "permanent brain network changes" (yes! permanent) are because of Enzymatic irregulations and unbalanced levels of Testosterone and DHT hormones.

I suggest trying Zinc 30mg + DHEA with YesPorn but NoFap strategy alone for few weeks and see for yourself;
and leave your current stack, As they're all only helping you indirectly..

EDIT: Aerobic Exercises and practicing meditation and/or Brain Training games with above treatment will really helps with overcoming brain changes faster.

EDIT2: Supplementing Forskolin and Vitamin D along with Fasting also boosts Testosterone and DHT levels.

Good luck

Edited by psychejunkie, 17 May 2016 - 03:18 AM.

[Grey baron]

Hey man, thanks for your suggestions,

Unfortunatley this disease does not respond to Testosterone or DHT, as I have tried countless Test, DHT sups and Rx's such as HCG, Tribulus, TRT, Clomid, DHEA, pregneolone. If anything they made it worse

Zinc is a 5ar inhibitor, so I'm not touching that, and my blood levels have been normal

Almost all of us with PFS do not respond to Hormone Thearpy, mainly because the gene has been silenced.

My DHT and Test are the same as before finasteride on blood tests

There have been too many suicides over this disease(maybe the top suicidal disease) and I don't want to be part of that statistic

I don't get a difference from not masturbating, not by choice, but I have ED and 0 libido, and have gone 2 months without masturbation. Luckily sometimes something clicks and my ED goes away for a while

Meditation does help a little, and I'm glad you reminded me, Stress definitely makes it more difficult, But most of the time it's so extreme with dementia, that you literally can't meditate

But the main problem is EPIGENETICS, either caused by methylation or acetylation of the regulatory AR gene, from overexpression and after withdrawal from finasteride my Testosterone binds to oversensitive(overexpressed) 5AR receptors, the brain realizes the extreme overexpression and compensates by silencing the 5AR Regulatory Gene Signal(by methylation or acetylation). And that's when I crashed and got all my symptoms, my symptoms came up in less than 10 seconds to full blown and have lasted for almost 10 months 24/7.

I also have MTHFR mutation which is a methylation disorder

I've done a lot of research on 5ar and the latest PFS studies point to overexpression.

I guess I'm asking for some ideas on demethylation agents or HDAC inhibitors to use, I know of Valproic Acid and Azacitidine, Sodium Butyrate


I'm Very Glad your doing better man,and envy you, but really thank you for the advice, unfortunately I don't respond well to Hormones or Hormone altering drugs.

Since this is more than likely epigenetic it CAN be reversed, it's just a matter of demethylating the brain.

Again Thanks man, any info or experiences are appreciated, I'm really glad you stopped finasteride, it is a HORRIBLE DRUG, almost 100% the worst drug ever created, can't believe a drug could cause sides like this let alone after you stop it

Thank You,

Joseph

Edited by Grey baron, 17 May 2016 - 05:11 AM.

[Major Legend]

Did you do a genetics test? I would be wary of actively trying to switch some genes on and off, perhaps you should try nutrigenomics before trying epigenetics.

 

The way these things work is there are so many enzymes and SNPs related to one process, that you actually have no idea what they are really doing. A mutation does not mean

anything if your body has adjusted to it in some other pathway. Switching the mutation off could create new problems.

 

I recommend reading Amy Yasko's book on MTHFR mutations before trying to mess with this stuff. Have you explicitly linked finasteride with the SNP you are talking about?

 

I know its a total pain but I would draw out the entire metabolic pathway of the gene you are talking about and see if anything can go wrong, otherwise u may risk making the whole thing worst. You don't know what your body has changed after the genes have been expressed, you don't know to what degree they are expressed, so you have to account for the fact that your body may already have tried to suppress the gene change in some form or manner.

[psychejunkie]

Hey man, thanks for your suggestions,

Unfortunatley this disease does not respond to Testosterone or DHT, as I have tried countless Test, DHT sups and Rx's such as HCG, Tribulus, TRT, Clomid, DHEA, pregneolone. If anything they made it worse

Zinc is a 5ar inhibitor, so I'm not touching that, and my blood levels have been normal

Almost all of us with PFS do not respond to Hormone Thearpy, mainly because the gene has been silenced.

My DHT and Test are the same as before finasteride on blood tests

There have been too many suicides over this disease(maybe the top suicidal disease) and I don't want to be part of that statistic

I don't get a difference from not masturbating, not by choice, but I have ED and 0 libido, and have gone 2 months without masturbation. Luckily sometimes something clicks and my ED goes away for a while

Meditation does help a little, and I'm glad you reminded me, Stress definitely makes it more difficult, But most of the time it's so extreme with dementia, that you literally can't meditate

But the main problem is EPIGENETICS, either caused by methylation or acetylation of the regulatory AR gene, from overexpression and after withdrawal from finasteride my Testosterone binds to oversensitive(overexpressed) 5AR receptors, the brain realizes the extreme overexpression and compensates by silencing the 5AR Regulatory Gene Signal(by methylation or acetylation). And that's when I crashed and got all my symptoms, my symptoms came up in less than 10 seconds to full blown and have lasted for almost 10 months 24/7.

I also have MTHFR mutation which is a methylation disorder

I've done a lot of research on 5ar and the latest PFS studies point to overexpression.

I guess I'm asking for some ideas on demethylation agents or HDAC inhibitors to use, I know of Valproic Acid and Azacitidine, Sodium Butyrate


I'm Very Glad your doing better man,and envy you, but really thank you for the advice, unfortunately I don't respond well to Hormones or Hormone altering drugs.

Since this is more than likely epigenetic it CAN be reversed, it's just a matter of demethylating the brain.

Again Thanks man, any info or experiences are appreciated, I'm really glad you stopped finasteride, it is a HORRIBLE DRUG, almost 100% the worst drug ever created, can't believe a drug could cause sides like this let alone after you stop it

Thank You,

Joseph

Have you tried Stanozolol?

[Grey baron]

Did you do a genetics test? I would be wary of actively trying to switch some genes on and off, perhaps you should try nutrigenomics before trying epigenetics.

The way these things work is there are so many enzymes and SNPs related to one process, that you actually have no idea what they are really doing. A mutation does not mean
anything if your body has adjusted to it in some other pathway. Switching the mutation off could create new problems.

I recommend reading Amy Yasko's book on MTHFR mutations before trying to mess with this stuff. Have you explicitly linked finasteride with the SNP you are talking about?

I know its a total pain but I would draw out the entire metabolic pathway of the gene you are talking about and see if anything can go wrong, otherwise u may risk making the whole thing worst. You don't know what your body has changed after the genes have been expressed, you don't know to what degree they are expressed, so you have to account for the fact that your body may already have tried to suppress the gene change in some form or manner.

Thanks a lot man for the reply,

Yes, I have gotten a genetic screen test done and shows MTHFR mutation(over methylation issues) on many different strands. The only problem is it will not show epigenetic changes on a basic genetic test, I would have to be a part of a study for that(which is what the PFS foundation is doing right now).

Yes this is 100% from finasteride, I talk to many who have the EXACT same symtoms as me from finasteride

The studies for PFS have shown significant overexpression of 5AR(only tested penile tissue). You're mainly right on track man, I think NMDA is severely down regulated as a result and GABA might be up regulated.

Yes I know it could be very damaging to my health, but basic demethylating agents that only work on specific areas like certain brain receptors, are what I'm looking for, I will not use a non specific demethylating agent unless it was a last resort.


You seem to get this pretty well man, and glad you brought some of your points up, because other genes might play a part in this as well, but mainly think that the 5AR signal has been silenced.

AR receptors regulate GENE TRANSCRIPTION so it could be that it changed the expression persistently of another gene, and that's why not everyone gets this that takes finasteride, either way it really is the most dangerous type of drug on the planet


Thank You,
For taking time out of your day to reply, really appreciate it!

Edited by Grey baron, 17 May 2016 - 07:31 PM.

[tiredcoopsies]

I would like to bump this thread.

 

I have also experienced this same crash after stopping finasteride. 6 weeks after stopping the drug I was suddenly hit with a total shift of consciousness. This includes extreme cognitive problems, different state of reality, derealization, low frame rate vision, early morning awakening, pounding heart, muscle wasting, digestive problems, skin is dry and thinnning. It's like some sort of autonomic nervous system disorder. But the worst part is the cognitive shift that feels like brain damage. This is a 24/7 condition that developed after stopping finasteride and lasts indefinitely.

 

There are many people who have experienced this 'brain damage' and are either too damaged to try to find an answer or have given up and accepted their mentally crippled state.

 

Many of us show no abnormalities in any kind of bloodwork or imaging tests.

 

Whether or not you believe this could happen from stopping a medication, please still provide any information on how we could reverse or demethylate epigenetic changes made to genes that control GABA or NMDA activity?

 

We are already trying all manner of healthy supplements and ketogenic diets.

 

We are looking for advice on drug and aggressive methods.

 

Thank you.

Edited by tiredcoopsies, 06 November 2016 - 07:49 PM.

[tiredcoopsies]

I'm sure that I sound naive and uninformed on these concepts but I am desperate for advice from others more knowledgeable.

[psychejunkie]

I don't know if OP has recovered or experienced any improvement so far, but androgen hormones have wide, deep and basilar functions across different parts of body and their influence and changes are usually permanent, except after extensive hormonal therapy! like what transgenders do.

I, myself, had lots of improvement by increasing both Testosterone and its conversion to DHT (just didn't care for hair-loss anymore!), but few mental side-effects are still present with minor improvement.

Don't want to murder your hopes and dreams, but I want to make you sure that playing with different receptors aren't the answer.

 

the best practice here is increasing androgen, I suggested Stanozolol and I think it help to reverse several of these severe 5AR-Inhibitors' side-effects. 

 

 

[tiredcoopsies]

Thank you for your response, it's really appreciated.

 

The OP is not doing better, I am in contact with him. He is still in the same state, if not worse.

 

Your reaction to 5ARI's was not the same as ours trust me. We have serious, life-threatening CNS problems that we think are a result from 5ARI's ability to decrease inhibitory neurosteroids like Allopregnanolone and THDOC, and then the subsequent withdrawal of the drug during which some permanent change has taken place in our physiology (epigenetic?). Many of us have tried countless methods of hormonal supplementation. Many of us have also tried various receptor agonists and antagonists to try sensitize various neurotransmitter receptors. Nothing helps to change our new permanent condition.

 

Doctors cannot help us. There are studies underway at major research institutions around the world to look in to this condition. Only they can truly tell us what is wrong. Everything I discuss is speculation.

 

However, some of us are interested in the idea of trying methods now to interact with possible epigenetic changes because our quality of life is basically zero. Possibly something like some people's use of vorinostat for fear extension.

 

I understand that androgens have wide, deep functions across the body but our level of dysfunction is still much beyond that.

[oolongmonkey]

My friend, I am going through something very similar. I had the same episode occur during a meditation retreat. I've been desperately seeking answers and honestly haven't found much of anything. Time, it seems has help me somewhat but I still have a long way to go. I'm going to start looking into neurotherapy/neurofeedback and hopefully that can give me some results. I've been dealing with similar symptoms for over 5 years.

[Quaker32]

oollongmonkey, were you taking finasteride beforehand? what were you taking when you went on your meditation retreat?

[oolongmonkey]

oollongmonkey, were you taking finasteride beforehand? what were you taking when you went on your meditation retreat?

 

I was not on any pharmaceutic medications or supplements. I was a vegetarian and I did practice excessively with practices aimed to open higher chakras. 

[Quaker32]

had a feeling that was the case. take a look at my thread if you fancy...might be of help. 

[oolongmonkey]

had a feeling that was the case. take a look at my thread if you fancy...might be of help. 

Let me know if you come to any resolution this. My theory is that this is an energetic phenomena. You enegery system is caught in higher level chakras(6th chakra) the goal now is to practice grounding, over and over and over. 

[Quaker32]

What do you mean by grounding? And how do you do that? 

 

You seem to know more about this than I do. Who told you that this was an energetic phenomena or did you just know that already? I am not spiritual or have a a spiritual practice. I don't know if you have read my thread, but mine came from trying to force a spiritual discipline to help me with recovery from addiction, which was an intently stressful and traumatic process.

 

I am scared.

[tiredcoopsies]

Please discuss chakra/energy/grounding in another thread please. This thread is about brainstorming ideas to deal with epigenetic changes induced by withdrawal of drugs that affect the nervous system. For instance, see the use of RG108 to reverse the effects of cocaine addiction after cocaine withdrawal in a mouse study:

 

http://www.jneurosci...5/21/8042.short