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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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VisualDude last won the day on March 5

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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 3╬▒-Androstanediol is know to have "rewarding, anxiolytic, pro-sexual, and anticonvulsant effects" https://en.wikipedia.org/wiki/3╬▒-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
  6. 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
  7. 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.
  8. Streamer and trails would seem to be that same basic brain areas at work. Basically for visual perception, half come from the most recent 'frame' and then the rest of perception involves comparing the current frame with the previous one(s). See: Iconic memory https://en.wikipedia.org/wiki/Iconic_memory Visual short-term memory https://en.wikipedia.org/wiki/Visual_short-term_memory Visual memory https://en.wikipedia.org/wiki/Visual_memory And of course the many links incorporated I've never read of dopamine's involvement in the systems but clearly it is. The natural stuff doesn't hurt to try. Tyrosine feeds ldopa which feeds dopamine, etc... It also feeds tyramine and the thyroid. I took so many herbs and supplements without results that it is difficult to even try to list them ... but perhaps they ended up building a supportive base that the meds could work with. Certainly if there is any sort of 'malnutrition' going on, it will impair meds and/or getting well.
  9. There is no standard treatment protocol for HPPD. If Keppra has helped you so much, why not continue? Or did it stop helping?
  10. The negative about Wellbutrin is that while it is a very good antidepressant, it often increases anxiety. HPPDers usually have anxiety. The positives are (besides the hope it might help) that because it is an antidepressant, doctors are more willing to prescribe it rather than something like Sinemet. If you do try, get either the regular or SR version - not the XL. The most common is 150mg SR pill. You can brake that into quarters then just try 1/4 in the morning and see. I took 1/2 at 9am and noticed improvement in 2-3 hours. By afternoon was sure. Color was brighter, depth perception improved, frame rate improved, and muscle spasms reduced. The next day, afternoon following the 2nd dose of 75mg, went to a massage guy that had been working with that year ... he said he could tell it was my body because the muscles were more relaxed. So it was dramatic since expectations were low. My experience with dopamine meds that help is that at first it helps a lot for many things, then it backs down to about 50%. With wellbutrin there was the pain thing and feeling too stimulated, so stopped. With Sinemet, don't have that (although if took 3 pills at once, would probably have the same problem). With anxiety, it immediately gets better then in a few days to about 1/2. When stop taking it ... anxiety/agitation slowly works up in the days/weeks that follow. Each symptom has its own response. And the ideal dose is a bell curve for each. Your anxiety will likely increase, but its possible that it will temporarily decrease. Meds are weird that way. It you have improvements, then you know that you are a dopamine responder and it is a matter of finding out the best balance. It would be interesting to see if you (or anyone else) gets frame-rate improvement. This problem is not mentioned much. Maybe its rare or maybe the 'rate' is fast enough for most that they don't realize that that is what is happening ... just a sluggish 'disconnection' from what they look at.
  11. Wellbutrin did not cause any damage. But the eye pain increased while taking it, especially by day 5 increasing to 150mg /day. Though there is no pain now, am sure if took 150mg for a few days I would feel it. The eye pain started along with fuzzy cataract-like vision in May 2007. Its largely non-existant now (>year) but had it for years ... and pushing NE and even DA meds too hard will make it worse during that. Suspect that ADD/ADHD meds might be more trouble than PD meds since often they tend to increase NE more, although had no trouble with Selegiline which, though mild, is amphetamine class (sort of) The only meds that caused long term harm were: Effexor - seizures and 2-3+ years cognitive damage, and Abilify - a single 2mg dose (pediatric) increased restlessness (akathisia) for over 6 months. Naturally am not fond of SNRIs or antipsychotics! Curious thing with akathisia, always had mild RLS. Then when trying Selegiline, slept so peaceful wife got scare I died. Many months later Abilify ended that ... and even taking Selegiline again has never restored that peacefulness. Again, there are meds types I hate, but some members say they benefit from them.
  12. The Wellbutrin SR 150mg mentioned above was actually very helpful ... even just 75mg in the morning. The problem was that higher doses caused increasing side effects in spite of helping visuals significantly. Agitation was one problem. Other was weird eye pain. This eye pain was one of the first symptoms I had along with blurriness. It persisted for years. Since higher amounts of Wellbutrin increased it ... it was concerning and I refused to push it. Just being on it a week, then off, improved frame rate 50% permanently - even without any meds. This was significant since the frame rate problem had not really made any improvement in one years time (Oct 2007 to Oct 2008). Eventually got to Sinemet, of which things gradually improved so that now its the sensation of having drunk too much. This last bit is connected somehow to DR because the moments that DR improves, the last of framerate improves. Time will tell. TC on full meds that I was taking seem to complete this but I reduced meds to better evaluate TC and give it time ... etc, etc ... Have you tried dopamine increasing meds in the past?
  13. It is kind of amazing that reducing the field of view will speed vision up. Before dopamine meds, the frame rate was between 1/2 and 1 sec. That doesn't sound like too slow but it is. Very strange sensation of everything there instantly except meaning. And if a person was walking, there would be a blur between frames. The first dopamine med was Wellbutrin SR. Was angry when getting it because thought it was too weak but it was the only thing docs would prescribe. But within about 4 hours of 75mg dose, stuff started improving. About day 6 added another 75mg dose. Vision got much faster but anxiety/agitation got bad. So stopped taking it and as the med got out of the body (~5 days) most symptoms returned as they were but not as severe. And the framerate stayed improved about 50%. Eventually, it has got so that I cannot tell that it is a frame rate problem (and would not have had the length not been so delayed earlier). Now it is more the sluggishness that one has when drinking a lot. Perhaps dopamine meds will help you ... not many report the frame-rate problem. Also, docs told me that trails and tracers are a dopamine problem. Some find Gabapentin sedative. It can vary a lot. Seems the TC is helping but not dramatic. Kind of the most common report. Perhaps it helps 'dopaminers' the most ... time will tell.
  14. slower frame rate - This is one that I have that dopamine meds helped. You can also 'speed' vision up by blocking your peripheral view. Either outside, inside or both. Here is an old link on the topic http://hppdonline.com/index.php?/topic/233-movement/?p=1787#entry1787 What meds have you tried so far? Have you tried TC yet?
  15. My little hound went down over two years ago ... still broken hearted about it. First few months would have intense emotional flashbacks about her dying. Perhaps a little insight for PTSDers - out of nowhere for no apparent reason. Now it just causes very very sad feelings Interesting about Neltrexone. Number of post of the forum. Hear some say low dose worked for about a year. How much were you taking? Thanks for participating in this trial ... hopefully you will be the one who benefits. The product seems plenty strong, as long as there is some cocarboxylase, it should do. Have you been taking B vitamins already? Lots of reasons people try drugs ... peer pressure, curiosity. etc... Once its stuck in the mind, it becomes entertainment and/or a numbing agent which can wash away ones concerns. Perhaps the trick is to find a new form of entertainment that is harmless. Enjoyed Jay's perspective http://hppdonline.com/index.php?/topic/3556-life-hasnt-been-the-same/page-3#entry32290
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