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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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Wondering if anyone has experiences relating to neurosteroids ? 

Neurosteroids are just hormones and hormone metabolites that influence brain function.  To illustrate: estradiol levels affect memory, testosterone enhances goal orientation and focus, the DHT metabolite 3α-Androstanediol is know to have "rewarding, anxiolytic, pro-sexual, and anticonvulsant effects" https://en.wikipedia.org/wiki/3α-Androstanediol

The topic CAN be an IS complicated.  Here is an excellent text regarding neurosteroids and seizures: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3728472/  .  Of course its relevance here is that HPPD is a constant pre-seizure state and HPPD at times responds to GABA alterations and neurosteroids actually modulate and can activate GABA receptors but don't loose effectiveness such as taking a benzodiazapine does.

I PROPOSE THAT THIS IS A KEY AREA OF RESEARCH THAT HAS NOT BE EXPLORED FOR HPPD.  Certainly hormone manipulations, particularly DHT and DHT derivatives substantially help my visual issues and other issues.  DHT is not only a "positive allostatic GABA modulator", it also has strong influence with D2 receptor function (a personal nemesis).  This subfunction relates to reading social cues and I suspect may related to DP/DR.

Now rather than make this complicated or get hung up regarding the technicalities of the subject, it comes down to does anyone notice effects from medication or changes in:

  1. Estrogen
  2. Testosterone
  3. DHT
  4. Progesterone
  5. DHEA
  6. Cortisol
  7. Oxitocin
  8. Finisteride
  9. Anastrozole

The list is not exhaustive but these are major players.  Here is a bigger list https://en.wikipedia.org/wiki/List_of_neurosteroids

Thank you for your paticipation

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@VisualDude no experience using neurosteroids - I was on enough of them as a baby having been born 3 months premature. 😂

On an unrelated but related note - has HPPD destroyed your ability to read and respond to subtle social cues? Mine certainly has, however my doc has diagnosed it as borderline personality disorder or a complication from being born premature.

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Yea, you were probably on cortisol as it helps lungs and things in that case.  I was a little pre and had breathing problems for 4 months (turn blue and needed to be revived).  Don't know all what that did but it could not have helped, lol.

My social cue thing is genetic from my dad's side but I have it worse.  So never have known otherwise.  Kind of autistic like but not that.  The visual damage was from a chemical exposure.  Eyesight was great before.  However other problems were magnified.  I do well with dopamine meds and a little gabapentin and klonopin.  One dopamine med, cabergoline, gave me the first taste of reading social cues besides the 'loud' ones like anger.  Cabergoline is a strong D2 agonist.  Recently, DHT further help visual problems and introduced feeling emotions that I began 'reading'.  Cabergoline helped just the intellectual aspect.  Curiously, DHT also influences D2 receptor function.

Can't help wondering if others would benefit at least regarding DP/DR and some visual aspects of HPPD.  Sexual function as well.  Can I really be so unique?  It would seem unlikely.

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Wow thats actually really funny. I've said that exact thing too... kind of like a little autistic but not really. Don't mean to derail the topic but I read that little bit, and in my head im thinking wow I thought I was the only one.

I got it from my dad as well. Like a little tiny neurological blip in the way my brain functions that causes me to be extremely highly functional but also completely cognitively ignorant of social cues, and behaviours - or hints. I just don't respond and carry on as if it hadn't happened.

(Mine became 10x worse when I got HPPD versus before I had it)

Edited by jbalsa2

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Maybe we're related, lol.  Some of my ancestors were follower of Joseph Smith (Mormon) who practiced polygamy.  So with polygamy, must be related to the whole Caucasian population (they were racist so only whites) at least from a cousin standpoint.  There was a Swedish member here who had similar med response and I do have some Scandinavian.  But who knows.

The social thing is real pain in the butt.  Ironically, my best friend had an autistic boy so it probably made it easier to be around me.  Unfortunately he moved away.  With DHT I began to understand others behavioral response toward me and it makes me cringe with embarrassment as the problems were my own making.  But at least I know now and never had tried to be a jerk, it just came natural, lol.  At times the flood of emotions was overwhelming.  Had to discontinue but due to plasticity, the brain now has a reference and I retain some benefit.  This makes the third med that changed things permanently, the others being Sinemet and cabergoline.  I still need them overall but at lower doses.  So the whole 'feeling' thing motivated me to start this thread.

The blip you mention involves D2 receptors though no doubt much more.  So you can try to Google stuff regarding D2, dopamine, social function, etc.   And might find some good stuff to contribute.  If you live outside the USA, you might find stuff we can't get here.  A couple Docs told me that when they travel overseas, they can get a lot more info on the internet.  Apparently content is somewhat controlled here - so much for the illusion of freedom.

Genetics can influence med responses.  You would have to try some of the same things to see.  Its hard to get doctor to prescribe.  Took 6 years to get cabergoline and longer to get DHT.

I've taken Keppra and its very sedative.  Unfortunately for me the dose needed to be increased and then when decreasing, muscle spasms return with a vengeance.  It has to do with acytlecholine.

[Addendum] Re: Genetics.  There were a couple hundred people exposed to the toxin that damaged me.  But only 4 developed overt neurological problems.  A pattern that may be involved involves dopamine.  I have always had moderate ADD.  Another fellow affected also had moderate ADD.  A lady affected had severe ADD.  And the last person had early Parkinson's disease.  So the toxin seems to have affected mainly those with dopamine functional defects that are genetic.

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Lmao what I read "My dad might be my sisters uncle but I have some swedish and scandinavian in there" hahaha. Just kidding of course.

Yeah my dad has it in a much more noticeable way, but his doesn't cause him the social impairment that mine causes me. For what it's worth a tiny bit of cocaine makes me much more socially functional, to a point, but if I exceed a certain amount it has the opposite effect. Sadly my doctor just tells me that like any other illness, borderline personality disorder exists on a spectrum and I just happen to be on the more affected side of that spectrum. It was like pulling teeth getting him to prescribe me keppra, and he downright refuses to let me try naltrexone.

Yeah i'm on keppra 1000mg/day, and it makes me extremely somnolent, like so tired I struggle to lift my limbs out of my seat if I have to get up. But as time goes on my body gets more accustomed to it and i'm not as tired. Keep in mind that process has taken many months.

What toxin were you 'exposed' to if you don't mind my asking? Under what circumstance?

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What toxin were you 'exposed' to if you don't mind my asking? Under what circumstance?

It was something like rubber-cement glue that affixes commercial carpet to concrete.

I don't believe Caucasians are racists, except when there's personal hate involved.

Was referring to Mormons.  They used to believe the dark skin was a curse from God because of Cain.  Perhaps their belief system has changed since my mother was one.

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On 12/16/2018 at 7:24 PM, Jagermeister said:

I'm taking Dexamethasone 1mg each week. It's so so amazing for me... Make my brain fog dissapear for literally 3-5 days.

I got the dexamethasone by myself.

Where did you get it?

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