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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

VisualDude

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  1. For what its worth (and in theme of the thread), the use of testosterone helps depression. It is well know that low T causes a depressiveness. This article is about using high dose testosterone for major depression. https://www.ncbi.nlm.nih.gov/pubmed/30427999 "Testosterone treatment appears to be effective and efficacious in reducing depressive symptoms in men, particularly when higher-dosage regimens were applied in carefully selected samples."
  2. Interesting that selegeline helps you. I've used it and it was helpful. Problem was doctor moved and other docs were afraid. By the time I tried it again, it wasn't all that helpful. I have RLS bad. Doesn't bother me but bugs others including my wife. First time using selegeline, it stopped and the change was so significant that at night my wife kept worrying I had died since I had never been so still. Later docs tried Abilify and the restlessness came back (had been much quieter for months after selegeline). Trying selegeline again had no effect on RLS. Typical with HPPD (and the like), one change can make something that worked no longer work. Just like 1 dose of Ritalin rendering Keppra useless. As for ADD and ADHD. It very much involves distraction. Seeking quiet settings is vital for study or accomplishing anything. Meds that 'quiet' can help provided they don't sedate too much. Then there is CBT to learn to observe when one starts to wander, then step back. It takes work but it helps. Dopamine can quiet but it can stimulate. Same with Testosterone. Both are know to help with focus, though T more with pursuing goals. IMO it is not a coincidence that some with HPPD have low T just as do most with a mild brain injury.
  3. I was able to double natural T with 1/2 anastrazol EOD (425 to 820) but it wasn't very stable, that is, if I got a cold, or took cortisol, or benedryl my T would crash. It my case, its a hypothalamus thing since overall my dopamine systems are weak and the hypothalamus has circuits using dopamine (autonomic dysregulation, which is controlled by the hypothalamus, is common with Parkinson's disease). Clomid 25mg also increased T significantly but I don't have blood tests regarding it. It also was unreliable. Typically people can get good rise in T with AIs or SERMs. But you need to watch E2 getting too low which causes depression. But it is simple enough to try. They don't have really long half-lives. Having a doctor give too much thyroid is horrible. Usually anxiety/agitation is high. What is your T level now?
  4. Was surprised to learn that T/E2 ratio is more important that absolute E2. Seen medical cases with gynocomastia. When given T, which raises both, the gyno reduced in spite of higher E2. Noticed that E2 affects memory as well. And brain fog. Not sure how women would apply some of this. It is safe for them to take T but the more they take, the more frequently they have to shave and wax. There is propaganda against women taking androgens as well. But Britain, for example, has been doing so for 60 years. Except for extremely high amounts, the body usually adjusts and HCT normalizes. So does vascular inflammation. Usually blood clots are an E2 thing and show within 3 months. There are 3 main underlying reasons, the main one being high Lp(a). There are a number of studies indicating the threshold of safety of testosterone is 600mg/wk which is considerably higher than what is prescribed for TRT. As a rule, all meds should be monitored. Its more like there is no such thing as a safe med, but meds can be used safely.
  5. Fantastic results. As far as trying anything else, I'd work with what you are doing right now. HPPD has a nasty habit of popping back with too many changes ... you've probably read such stories on the forum. So go steady and see how this sets in. Yea the studies on testosterone show lots of benefits. Even with most prostate cancers although docs are locked into the myth of how bad T is. The whole bad rap started because of athletes using steroids and then laws against it ... there was never significant concerns about T medically.
  6. You mention the benefit lasted for weeks. Is he still benefiting? Androgens have both genomic effects (through Androgen Receptors) which take hours to days and non-genomic effects which can be less than a minute. The latter are prominent in the CNS. It should be noted that low T is common among those with brain injuries, mild or otherwise. Generally people with HPPD object to the idea of 'brain injury' since is sounds frightening, but when things are not functioning correctly due to a drug aftereffect, how has the brain NOT been injured? Injuries can heal and often do. The benefit of the comparison is to broaden one's scope for treatment options. Hope he is doing better
  7. Please describe effects. Mine are that DHT resolves 2 major visual symptoms that nothing else (except high fever) resolves. DHT derivatives improve sharpness and overall quality of vision. T helps language comprehension, focus and fatigue. None 'cure' me but do improve quality of life.
  8. SAGE-217 is a synthetic "positive allosteric modulator of the GABA A receptor". That is what the metabolites of DHT, progesterone, and a whole lot others are [ https://en.wikipedia.org/wiki/5α-Reductase#List_of_conversions ]. GABA A receptors are what benzodiazepines bind to produce the benefits. What the phrase above means is that it amplifies the effects of that particular receptor. Don't know why they need to develop a synthetic when natural ones exist. Probably patents. Could also be to get around the propaganda against androgens. Or it may be a more effective delivery method. Generally speaking oral androgens are rather liver toxic whereas injected or topic preparations are not. Perhaps SAGE-217 isn't. (As a side point oral progesterone and oral estrogens produce rather unfriendly metabolites, but again, injectable or topical versions do not). Was able to speak with a scientist who specializes in androgen's effects on the brain. She describes these as "the brains natural benzodiazepines". That they are necessary for mental/emotional health and are often insufficient in people suffering mild (or otherwise) brain injuries. There is also a study showing that moderately high doses of testosterone (must be > 500 mg / wk) can treat major depression. [ Typical TRT doses are 70-200 mg/wk ] In general terms, testosterone helps with mental focus and accomplishing goals. DHT gives the 'feel good' effects. In the end the question remains: Does SAGE-217 work better then benzos? Is it safer?
  9. For decades I've always kept suicide as a viable option in my mind. Don't know if that qualifies as 'idealization' ... don't exactly care. Obviously since its been over 40 years and I haven't done it, this 'idealization' hasn't hurt. But neither has it been a boy-who-cried-wolf (especially since I don't tell people). It is just that the 'option' helps me to not feel trapped. Get irritated when a psychologist spouts the old chestnut, "Suicide is a permanent solution to a temporary problem". They are just doing their job and they ARE RIGHT. I just don't want my suffering to be trivialized. And what is REALLY wanted by nearly every one is relief from suffering. HPPD and its like can cause a lot of suffering. But like the poster above, ALS would really be horrible - slow self disintegration, suicide not necessary as its already happening slowly without choice. A better way (and forgive my snobbery) is to take what little energy to find things that help. Everyone is different as to what helps but there is always something to alter. And each thing that helps provides a clue as to what next might help. How many have tried options that have helped others? Usually it a problem of getting docs to prescribe things. mgrade: I don't remember you by that name but I've been away a couple years and forget things. Know you've been fighting with this a long time. But don't throw in the towel. If you are serious about the goal, what can it hurt to check into a MHU? They can pump you with enough stuff so you don't care about anything - a temporary solution but it might lead to a better one. Just saying ... You say your country has crappy MHU? May I ask which country that is? Here in the USA, things aren't so wonderful as people think they are. Those who say it is great are those who haven't really needed it - so they speak in ignorance. If you are able to go to a foreign country for suicide assistance, why not try health assistance? As for "The direction of the world is going straight fascist", don't waste your thoughts on woes you can't change. Some governments are easier to deal with but none have every taken care of every citizen - someone always suffers. Whatever government system there is, you have to find a way to survive and find something for yourself.
  10. 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.
  11. 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.
  12. 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.
  13. 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: Estrogen Testosterone DHT Progesterone DHEA Cortisol Oxitocin Finisteride 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
  14. This thread illustrates: The reason researchers won't bother to look for cures for HPPD Why many doctors don't do much to help HPPD Why CBT is the most important treatment for HPPD Why society considers drug users a bunch of losers
  15. Re Piracetam: If you do a search, you'll see various posts here about it. It does nothing for me. Re Psychiatrist: Docs started hinting it was all in the mind and 'hypochondriac' so went to psychologist and eventually it came down to: "You have a serious neurological problem. Stop wasting your time in this town and go to Boston". Well, didn't know who to go to in Boston and did not have insurance that covered out-of-town (in USA, much health insurance only covers a local region ... if you need outside help either get rich or rot). What this did accomplish is establishing a medical record that it isn't 'just-in-the-mind'. Don't know what Poland is like but this helps establish bases. And it is also useful to learn techniques to better manage anxiety and depression Re Hypoxia: Interesting account. Mom had a long, many hour delivery. Born with water on lungs and difficulty breathing. For 4 months would stop breathing, turn blue, and have to be revived. Always a skinny, fidgety, shy, anxious child. Like you, have long thought hypoxia a factor. According to Robert Sapolsky in Why Zebras Don't Get Ulcers, if you want to make an anxious/neurotic rat, briefly deprive it of oxygen just after birth - it changes their brain. Had learning problems but not with math or science. Language is a problem and work very much to try to communicate accurate. To this day, even though hearing tests have always shown better than average hearing, usually cannot hear or understand lyrics to songs. Curiously, some thiamine deficient children show language problems and some movement problems. Always a klutz. A little ADD. Would often stare in space in own thought and got the nickname 'Spacey'. Teachers would be mad but then usually passed tests - 'B' student unless vocabulary or history. Social interaction problems ... lets see, an anxious, needy, spacey, ADD, klutz with language problems - what could possible be wrong? Add an abusive older brother to the mix just to spice life up a little. Ironically, some of the dopamine meds I take have not only helped visual stuff, but also some lifelong problems ... actually have needed Sinemet since childhood. Also another beneficial med but it damages heart valves and would be dead by now if started taking it as child. The only visual thing as a child was mild CEVs. It was fun to put light pressure on eyes and watch the shapes form and change. Doc once told me that severely retarded children do that ... so apparently am severely retarded. These slight CEVs gradually went away in the 20s. If I take a lot of anticholergeics/Keppra can get some faint CEVs. Grew up isolated and learned to make own world. To this day, prefer to reinvent a wheel rather than use one already made. Thrive on learning/understanding principles. But details are random on remembering. And words are a nightmare to learn. Perhaps the best therapy would be to be dropped off in a country of different language and forced to learn. Re HPPD: Unlike most here, have never tried recreational drugs. One advantage of being isolated ... and being spacey - don't need drugs to go off into la-la-land. Problems started 9 years ago and official diagnosis is Toxic Encephalopathy which is broad and considered worse than HPPD. It also does not have any standard treatment protocols. Ironically, I probably don't belong on this site ... but since there are overlapping symptoms and treatment responses, am here. Re Muscle tension: This showed in late teens, got worse in 20s, much worse in 30s, horrible in 40s. Chiroprators helped a lot. Prolotherapy for damaged tendons helped. But finally dopamine meds really helped. Most recently, thiamine cocarboxylase further helps. Anticholerginics help but each day the dose needs to be increased until memory is trashed and can't function well. Are you neck muscle problems since the accident or have you had difficulties before that? Since there are these similarities in our cases, perhaps: Somehow get thiamine cocarboxylase - does Amazon ship there? Think onelovez is in Poland but he hasn't confirmed what he got or how See about Sinemet 25/100 Discuss these with doctor. If they are rear-ends, search for useful ones Go ahead and work with a shrink. Some can be useful. Look for one who does volunteer work on the side - that may indicate someone who cares and is not a useless cold fish. Some of these are more willing to prescribe Sinemet and other 'unusual' things than most docs. Med responses, good or bad, can help with diagnoses and, most important, begin to provide direction for what to try next.
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