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lostcause

HPP Community

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I always wonder how many of you out there with HPPD know anyone else with HPPD. I feel like most of the problems I have are strictly related to not having anyone there to relate with, not to mention i havent told a single person what I am dealing with. I daydream about finding the courage to tell someone, but always know that I am too scared of the judgement.

I havent seen any posts or anything about HPPD events or get togethers. Someone needs to hop on it, because it would boost morality and awareness in this horrible, horrible disorder!

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Honestly dude, I've known people with mild symptoms, but they all seem to be fine with it, so I guess it's not true HPPD. Every time I talk to the true druggies, it's always the same...I know so many people whove done so much shit and theyre all fine blabla it's a myth, and when I try to talk about this forum or condition, they always seem to look at me like im retarded. Idk, I dont care what people think, never have, all i care about is that I have people here who support and emphasize and can help me.

Thats it.

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Honestly dude, I've known people with mild symptoms, but they all seem to be fine with it, so I guess it's not true HPPD. Every time I talk to the true druggies, it's always the same...I know so many people whove done so much shit and theyre all fine blabla it's a myth, and when I try to talk about this forum or condition, they always seem to look at me like im retarded. Idk, I dont care what people think, never have, all i care about is that I have people here who support and emphasize and can help me.

Thats it.

Dan, 21, was home from college in the middle of the winter, having dropped out after a miserable year and a half. His problems had begun about three years before, shortly after period of drug experimentation which had included three LSD trips. A few weeks after his final trip, newly abroad as an exchange student, he began experiencing spontaneous visual hallucinations including moving "dots" in the visual field, afterimages or "blurs" of moving objects, a sense of being able to "see the air," and other phenomena described by Abraham in 1983 (see also DSM-IV, pp.233-4) as "post-hallucinogen perception disorder." Neither his hosts nor the European physicians he eventually saw had any clue about what was wrong, and Dan sensed that they were beginning to think he was a hypochondriac, so he stopped complaining and endured this problem on his own for a year, fearing for his sanity. Not until he started college back in the U.S. did he find his way to a neurologist and eventually to Abraham himself, who made the definitive diagnosis and found "persistent activation of the right posterior temporal area" after visual evoked response testing. [The electrical activity in the brain's visual cortex, generated in response to a test stimulus, did not die away within the expected amount of time, but kept on going for much longer.]

The symptoms were managed with clonazepam [trade name Klonopin, a potent relative of the familiar Valium] on the theory that their neurologic basis might resemble siezure activity. Dan seemed to require high and ever-increasing dosages, and became withdrawn and depressed. He stopped functioning in school and socially, drank alcohol more heavily, and, when he realized what was happening to him, finally decided to come home.

My suspicion, when I began working with Dan, was that the clonazepam was a major contributor to his depression. But my initial efforts to taper the dose, while working in conventional psychotherapy on developmental issues behind his sense of being punished by his perceptual affliction, met with resistance and a florid worsening of the visual symptoms. Then, four months into the work, came the session when I spontaneously sat next to him on the couch, looking out the office window at a clear blue sky, and asked him to describe what he saw. As he began I tried to "suspend" my habitual state of consciousness and see whether any of his "hallucinations" were visible to me.

To my surprise, I was immediately able to see irregular linear shapes floating slowly across the visual field. When I blinked, they would change shape or position. I began describing this to Dan in great detail so that he would have no doubt that I was not simply repeating his descriptions, but actually having my own similar experiences. Clearly, these "shooters" seemed to be generated by something on the surface of the eye to which we don't normally attend. I invite the reader to try this for him- or herself.

In this and a few succeeding sessions I was able to experience with Dan most of the phenomena of his illness, including visual "trails" of moving objects, various line-shape illusions such as level bookshelves slanting, "aeropsia" (a sense of bright whiteness in the air between us and observed objects), and "dancing bright spots" originating between the letters and words on a printed page. With minimal information from him, I could describe these convincingly, at times even completing his sentences. We both found this a strangely exhilarating activity. It was clear to me, however, that I did not experience these visual phenomena as intensely and persistently as did he, and that I could ignore them at will.

Whatever the physiological mechanism of this disorder may be, it is obvious that functionally a failure of a normal pre-conscious "editing" process was occurring, whereby additional irrelevant aspects of raw perceptual experience were reaching consciousness.

Dan reported a great sense of relief and "normalization" as a result of these few sessions. Tapering of his clonazepam was now accomplished with relative ease down to a very minimal dosage. Predictably, the major depressive symptoms resolved. There was much else to talk about in a year of therapy, but we both agreed, and still agree several years later, that our perceptual experiment was the turning point.

Before our mutual experiences, the symptoms "meant" that Dan was crazy, different from other people, alone forever in a distorted visual universe. This triggered a vicious cycle, or "positive feedback loop," in which Dan’s anxiety about this situation served to amplify the symptoms in his conscious awareness and continually re-focus his attention upon them. Thus the ordinary distractions of everyday experience were unable to perform their potentially useful role, powerless to divert him from an "illness" which became the center of his life and, expectably, a crystal nidus for fantasies of punishment which sprang from their usual developmental lairs. He was quite capable of understanding the sources of this hitherto-latent shame, but this did not impact his perceptual distortions one whit.

After the "normalization," though, Dan had only the symptoms themselves with which to contend, and not the snowballing anxiety and sense of retribution. He became more distractible in the healthy sense, his conscious attention freer to roam, or focus elsewhere (studies, relationships). And through the experience (and perhaps, I'll allow, as a result of our developmental work as well-- sudden "miracles" usually have some amount of groundwork preceding them) he had found his way to a more thoroughgoing self-acceptance.

Dan returned to a different college, did very well, and got his degree. He now works in the mental health field. For the past seven years the same low dose of clonazepam has been necessary, but with it, except in times of extreme stress or physical fatigue, he is rarely bothered by visual symptoms.

A case of "post-hallucinogen perception disorder" by Paul Genova, M.D.

(Adapted from author, The Thaw: 24 Essays in Psychotherapy; Pittsburgh: Dorrance Publishing Co., 2000, pp. 17-19. Used with permission from the author.)

kozin 8032B.pdf

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Wow, this is a powerful piece of literature. I never thought of this condition as a flaw in the editing process of visuals but it makes too much sense. I have always felt like I am seeing things I have always seen ghosting, afterimages, starbursts, but now they are so much more intense and I am never able just block them out like I used to. This explains hppds link to anxiety because like the passage states, with anxiety, you are hypertensive to everything, which feed the visuals which feed anxiety.

At least I know I am less of a ypochondriac then I thought, that my brain has not be en critically damaged or has transported me to a realm nothing like my old one, one where outlines of tvs get stuck in walls and everything slightly shimmers. This helped me with my probable progressive dp/dr. And although there is no comfort of a full recovery in this one, it gives me great comfort that it is only me seeing more, a malfunction with the visual parts of my brain. Thank you.

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I don't know anyone except on this site who has HPPD. The psychiatrist who diagnosed it had only seen it one other time. Don't get me started on how painful it has been for me and probably most of us to be passed from one doc to the next. I've even had one doc who rolled his eyes at me when I told him I saw squiggly lines everywhere. I recently had surgery and when one of the surgical residents saw HPPD on my record and I explained it to him. He said "Does anyone really buy this?" Nice huh. The place I had surgery is one of the largest and most prestigious teaching hospitals in this country and the world and they have no clue. Lostcause, I truly relate to you and you are not a lost cause. Although I feel that way myself sometimes. I'm lucky, I think to be in a 12 step program with lots of other folks who experimented with drugs and some of them have had temporary flashbacks so they can understand. But even quite a few of them don't understand whatsoever. I can't drive because of this and I don't do well in situations with a lot of people and noise, so some just think I'm not that friendly or something. Oh well. At my age and with all the crazy things I've done I'm lucky to be alive. And Dan thank you for the story. I hate that I can't take benzos, because I'm told this provides a lot of relief for us. Take care Alisa

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That's what has helped my anxiety, or at least did in the beginning - knowing that I wasn't crazy, that I was just more tuned into normal visual phenomena that were now amplified

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