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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

J.L.

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  1. J.L.

    Born with HPPD(?)

    I have not seen a neurologist in many years. My susceptibility to after images was enough that I prefer to do anything I can in near darkness wherever and whenever possible. Trails were a major issue with driving. Stars come and go as they please. I find THCA with CBD to be calming on my nerves. Naltrexone definitely reduced these effects enough that I can refer to them in a past tense. It's also been surprisingly helpful in progressive scoliosis correction. Just have to be really careful with stimulants like caffeine, I'm personally prone to headaches from energy drinks probably due to the sugar alcohol. The pseudo hangover alcohol induces when naltrexone has been in your body is very dull but very strong. Oh and I forgot to mention, I no longer take cymbalta. It became nearly useless once the naltrexone took full effect. Also that I find myself spending much longer on white background webpages such as these at night. My entire screen is frosted with floating colors at 1% opacity with the occasional black and white sparks and floaters flying off the screen at 110% opacity. It takes me much longer to think through this distraction.
  2. Boy, have I had fun struggling to explain this over the years. Having read implications that people can naturally develop HPPD without the use of drugs, I feel brave enough to come out and propose... I believe I was born with HPPD. Yes, there are an endless amount of possibilities of what can happen to a child before their memory develops. The unknown aside, my mother swears upon her life that she was emotionally compelled to be clean during her pregnancy. She did however try recreational substances in the years before her pregnancy. That's all there really is to factor into the early development without getting into genetics. Fast forward to my mental awakening: My earliest memories go as far back as 2 years old, with a high amount of detail for a small handful of experiences. HPPD's visual snow began as early 3 years old, no sooner than 4. I can't tell you anything else about my life with more certainty. Staring at a moonlit ceiling while lying in my parents' bed, unable to sleep, I could conjure up the visual snow and follow it about for entertainment until dozing off. I distinctly remember it starting as a zebra-like puddle which grew in unnaturally rippling waves. I was obsessing over this nightly until it began to take color and move like a three-dimensional flock of birds descending from the gypsum ceiling to toil about as a flock of hundreds of birds would. (Side note: Growing up with white Gypsum walls/ceilings is a disastrous trap for obsessing and worsening the condition. In my worst episode, I was seeing morphing, endless crude depictions of the black plague in my gypsum-walled home, aprox 16 y/o.) Depersonalization symptoms set in around 4-6 years old, the beginning of which I described as having, "woken up for the first time;" but I was already awake. I asked my mother if she felt it, worried it was a natural phenomenon I'd just experienced. This took place on the usual morning drive to school. At around age 10 I 'lost control' due to obsessive habits mixed with social stress, and began to have increasing difficulty with reading. At the same time I developed a sensitivity to horizontal stripes of almost any two colors. They force a sensation of false-vertigo, nausea, anxiety/nervousness, poor sense of balance or the need to steady myself all with an alluring fixation on this rather distressing visual. It's taken a long, long time to learn to limit the amount of stress this causes to a manageable level. Object-specific color changes usually occur with a pearlescent effect, and are a rather relaxing replacement for the old habit of obsessing (wall staring). Strangely, I find both the visual snow and object specific color changes to be... slightly controllable during dawn and dusk. I can really only give it the last mental nudge to get started, but otherwise can't control the outcome. I can also intuitively fight the potential minor trigger sensation/stimulus in an effort to squelch micro-episodes. Sometimes it takes a bit more than just conscious ignorance, which I really cannot describe yet. Along with this came high-ceiling spatial distortion. Basically what I mean by that is... Any warehouse sized store such as Target, Walmart, Raley's, Costco, Sam's Club, Sports Warehouse or even hardware depots will all force sensations of losing balance constantly between peripheral warping. I can only describe this as feeling like walking in a hamster ball. I must say this one snuck it's way into my childhood at random before becoming a staple of my symptoms. It takes intense concentration, energy and physical control to navigate the store. (merely forcing myself to remember the experience to describe it with better accuracy sent me into a slurry of funny typos!) I've always been regarded as dramatic or 'overly dramatic' for complaining of such sensitives growing up. None of my complaints were taken even remotely seriously, allowing me to steep in these issues and make them grow worse. Of course, my family speculated in all the wrong directions when they did listen, only creating more stress and many unnecessary issues through years of misunderstanding. I can't tell you how great it felt to shed the hysteria pinned upon me of potential mental illnesses once I learned about HPPD and shared it with my family, regardless of whether they believed me or not. It would be useful to note that I also went through roughly 10 years of chronic lyme disease, which definitely worsened my visual symptoms. I'm now 20 and going on a year and a half lyme-free (supposedly). My lyme treatments did not seem to have any particular effect on my HPPD besides the associated stresses of treatment. While moderately tamed down in severity, my visuals are still occurring daily. Experiencing my visual distortions is about as normal as breathing now, occurring or interacting with my daily life as subconscious thoughts do. I avoid recreational drugs adamantly as they can throw me far out of the balance required to keep my own peace. The medication combination I've found to help lessen my HPPD (prescribed for reasons other than HPPD) are Low Dose Naltrexone, Cymbalta and medicinal cannabis extracts. The LDN (Naltrexone) has been my only successful combatant against depersonalization, albeit a slow creep. 10mg Cymbalta once in the evening is just enough to help reduce possibly over-exciting stimuli from actually being too exciting. Yet, I still can't sleep in a dark room most nights. In fact, my difficulty sleeping is what's driven me to write this introduction. I've been skipping stones on the issue all my life, but it's only been getting worse. I used to sleep with lights off as a teen no problem. Now I absolutely need a lamp in the corner of my room to be lit until sunrise. I'm in an odd pickle, since this situation leaves me seeing pockets of visual snow on a nightly basis when trying to sleep. If I try to sleep in darkness or near-darkness, the slightest flicker of visual snow explodes into momentary images or after images of rather terrifying things; usually large or distant faces of ambiguous or monstrous nature. Sometimes straight out of media, sometimes abominations of the imagination. I find these frightening because they occur like jump scares, when I least expect them and only for a nano-second. I'm not one to obsess over violent or scary things, instead I'm unsettled rather easily, so I prefer to avoid thinking on such things. Perhaps that practiced avoidance is what's nurturing this emerging issue. Anyways, therapy is not helpful for this, as the phenomenon doesn't seem to be entirely tied to my state of mind. Certainly provoked under stress, but definitely no recurring themes or obsessions which could fuel these more severe night-time hallucinations. I've tried chopping this up to many other diagnosis by myself since my 20+ doctors over the years have never been able to guess at anything better than visual synesthesia or eye damage from frequent TV usage. Much of dealing with HPPD seems to be oriented around self-discovery rather than self-treatment, in my opinion. I'd love any feedback from others who believe themselves to have been dealt a similar hand in life, since we seem to be too few to notice or be noticed. ❤️ - J.L.
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