Hello All, My name is Allen. I've browsed this site randomly over the past couple years but was afraid share. I'm in my 30's and have had HPPD 2 for 18 years. I was diagnosed 5 years ago after a seeing countless doctors through the years. Recently I found out my wife was pregnant and I became determined to find a treatment or, god willing, a cure. When I was in my mid teens I took lsd about 5 times and I was a chronic marijuana smoker. The last time I took lsd I smoked weed at the same time and I had the worst experience of my life: My heart began to race uncontrollably, my arms and face became numb; I saw long blury trails on everything and I felt hot and cold all at once. It was so intense that I thought for sure I was going to die. In desperation, I curled up in a ball on my couch, closed my eyes, and began to pray to god repeatedly to make it stop and let me live, until eventually I fell asleep. I woke up the next morning and thanked god I was alive. I swore of lsd forever. Unfortunately that didn't stop me from trying to party with my friends as usual. Every time I smoked weed after that I would have severe panic attacks and almost black out. When I'd drink alcohol I felt like I had a lump in my throat and couldn't breathe. A couple weeks after that horrible trip I woke up to a dull version of the same type of visuals I had the night of my bad trip, I was petrified and began having random panic attacks. I finally told my mother what I did and what happened since and she took me to the doctor. The doctor swore it was depression with anxiety and completely dismissed any lsd involvement. She prescribed me Effexor and xanax. The effexor didn't help at all and it made my heart race. The symptoms were not going away. I was afraid I damaged my brain beyond repair. Shortly after I withdrew from school and became a hermit. The xanax helped a lot with anxiety but the visuals remained. Through the years I saw about a dozen different psychiatrists and none of them knew what was wrong with me and continued me on benzodiazepines and ssri's. I lost my insurance and couldn't afford all the doctor appointments and medicine, so I began getting zoloft and Vicodin off the streets to self medicate. Eventually the visuals became less intense and my panic attacks were less frequent. Although the visuals and anxiety are a part of my daily life, I still manage to function. Some days are worse than others but I forced myself back into society and I got a good job in construction, and married my girlfriend who has been with me through this whole experience. I got off the vicodin with suboxone and continued the zoloft. With the news of our first child, I found a new determination to get rid of this horrible disease for good. I told my doctor that I wanted to try anything we can to make this stop and she agreed to start prescribing me different medications to see what, if anything, will work. She prescribed clonidine last visit and I started it 6 days ago. Unfortunately it hasn't helped my visuals at all and last night I began having strange thoughts and seeing weird images when I closed my eyes. I'll keep everyone updated on how it goes. I'm really hopeful that something will get rid of this for good. Wish me luck and good luck to all of you.
P.s. I am thankful to whomever started and maintains this site. I hope we can get this horrible disease more attention and find a real treatment for it.
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.
By Loukas iliop
Hi guys. Im apparently new to the forum, so i want to start by explaining my story and how and why i got here. Im 16 years old and as you can imagine, people between that age aren't very concerned about their health or anything in general. Even though i was a kid who liked exercising or working out i was also very curious on trying drugs like weed . About a year ago, my mom got cancer but i couldn't feel anything, like i had no fear that she was going to die(i hadnt tried any drug in my life, not even tobacco or alcohol), feeling like im some kind of numb, not having empathy (which scared me because i was that kid who would be concerned about anything related to his family.) A couple months later, i started feeling more lost. I had lost the days and i didnt care at all . I was depressed but i didnt want to realize it. I couldn't accept the fact that something was wrong about my mental health at that point. After my vacation between December and January, i came back, again kinda numb. School was closed for Christmas and would open soon. As school opened, my friend asked me if i want to smoke some weed with his friends. Not even thinking about it, i answered, why not? The next couple of weeks i would smoke about 2-3 bong hits a week(nothing more). And yet i wasnt feeling high(maybe because of the dosage) . So one day i made a stupid desicion to get as high as possible(at that point i hadnt get a single high feeling in my life, not even from the bong hits). I started smoking and taking bong hits. I ate nothing. Fifteen minutes later i was kinda confused. I would be so stupid that i couldn't even think of simple things. I started to realize that i was high and it felt cool, for the first minutes. 2 minutes later i started feeling like i was in a boat, like i was lost and dizzy. Suddenly, my vision started to have some wierd black dots everywhere . I had a blackout and a bad panic attack . The high was so strong that i couldn't control or see anything for a couple of seconds(idk if that sounds a bit unrealistic but im trying to explain everything as it went through). After that seconds, i took control over my body, but it was like i was in a lucid dream. Like i was a camera, like i was observing the world through the tiniest tv screen . I felt my body strange. I would touch things and feel them after 2 to 3 seconds . I was so confused and anxious . My friends had freaked out because nothing similar didnt happen to them ever .i lost my mind, i got paranoid that this thing would last forever, like i was going to live the rest of my life like this. 2 hours later i wasn't high no more, but something felt strange. I went to sleep and i remember being between sleep and awake. I was so lost that night. I was having a dream of getting paranoid while i was also partly awake. The morning came and yet i was lost. I had black dots around my visual field, I couldn't see the walls clearly, like if they had some light everywhere in them. Moving my eyes from a shiny direction to another, i would see the previous image blurry for a couple of seconds. All that combined scared the shit out of me making me more paranoid about everything. I started feel like i was fake, everything seemed like a dream, my body felt like it wasnt mine. I got home after school and i remember having a nap caude i was to tired. Again, i couldn't sleep, i was somewhere between sleep and awake, lost. I woke up feeling like i was a stranger to everything. I had delay on touching things like when i was high. Im not gonna lie, i thought i was in a dream again. That night i explained my parents everything and they were very helpful. The next days my symptoms got worse. My anxiety increased and i had some terrible panic attacks. I would see those black dots everywhere ( when i would wake up in the morning they were moving fast as hell), and a little tinnitus. After a couple of days i would have that delay over the things i touch for some minutes and that was kinda annoying and unexplainable to me . I started observing around and seeing some small halos around people. The first couple of months was literally HELL. Suicide was the only option, i would tell to myself. Everyday i was overanalyzing everything. My walk, the way i talk, how am i able to see humans everyday without observing everything they do and all that insane stuff. It became i habit. Every single day 24/7 checking in to see whats wrong , if im going to be like this for the rest of my life. I went to therapists but they didnt help. They wouldn't diagnose anything. I had an mri and still nothing. I was feeling so unaware of everything. Being in autopilot. I also started homeopathy but it didnt help. My visual symptoms stayed the same 24/7 . The only time the were worse , it was when i was waking up(stayed for 10-15 minutes and then back to normal). 2 months got by without me doing nothing except of overanalyzing every single detail of me, my movements everything.it was that time that i couldn't take it anymore. I started running once a week . It did help with my anxiety (not my visual symptoms though. They were the same all the time.) I also started to taking cold showers. Amazing . Simply amazing for my mental state. It was so difficult at first but i tried and trying my best not to care about jt . I would gonto school and starting to get mote sociable,although feeling lost cause of my vision, but i tried not to care at all(it helped). Now im 4 months after that terrible experience and im way better with the dpdr thing. The only thing that remains is the visual symptoms and the feeling that im in a moving boat. They scare me sometimes causing me panic attacks. I hope that time will heal me and all that people that feeling hopeless. Remember guys, you are not hopeless. You will never be. I was hopeless for months and i did nothing. I AM BETTER. even though my vs and all that hppd symptoms are still there im in a way better mental state than i was. If someone is feeling hopeless or wants to talk, feel free to hit my dm anytime. That was my story . Hope u people found ot helpful. It surely release some kind of a tension to me! Stay safe
Hi, I'm 16 and 5 months ago I smoked weed for the first time, never have taken any sort of drug before that. I had a really bad trip, followed by panic attacks and heavy depersonalization/derealization. When I woke up the next day for the whole entire week it looked like everything was in fast forward. After that week the world started to look dreamlike out of nowhere and then I got used to the symptom (especially after I knew it couldn't hurt me) and it kinda went away, my dp/dr was going away too but I was still pretty anxious and shaken up by the whole experience. About 2 months ago I was walking down the street and my vision started focusing and unfocusing, and I was back in a dream state. I started experiencing all types of really scary visual symptoms like static, after-images, looking up in the sky and seeing all these little tiny white dots (SO MANY), vision skips, tunnel vision, flashing whenever I look at lights, I even have seen colors or glimmers on walls before. Objects have violently shaken up until I blinked, when I bite down on my nail everything goes up and down with it (it's really hard to explain) or when I chew the whole world shakes with every bite. I can't look up, down, then side to side or else my eyes feel so fucked. I have this head pressure 24/7, reading is hard as the letters shift every 10 seconds. I am so so scared, I know you guys probably don't care but before this, I was a really good student, ran track, had plans of going to college and I can't even walk outside now without everything looking so fucking weird. I feel like I'm going crazy. Did I permanently fuck up my brain? Does this even sound like Hppd or something else? I have no one else to really talk to about this because no one else in my life understands, everyone I know just smokes weed and it perfectly fine, Please please if you have ANY advice or can relate to any of my symptoms I would really appreciate it.