Hello everyone, in advance I wanna apologize for my non mother tounge English and for not really coming to an end with telling my story and maybe using the wrong tread for that post.
I‘m not quite sure yet if a self diagnose with HPPD is appropriate for me but I want to tell you about my story, my seizure-similar experiences and my worries about taking meds.
i don’t really know when all of this started.
I‘m 24 now and I’ve been smoking weed regularly since 2015/2016, never had any noticeable problems with consuming it but could always keep it on a kind of moderate level, smoked everyday but usually at night time and never had problems having breaks inbetween for weeks.
August 2019 I went to Indonesia/Gili Islands and „of course“ I had to try one of there mushroomshakes there, Even though I never had drug experiences besides 3 times of mdma and the weed. However, the first mushroom trip was quite pleasing nothing as how I experienced it and the dose was very low as I wanted it to be so I nearly had any hallucinations, my mind felt very clear and I did feel kind of creative. That good and light experience might have taken the my „respect“ of this drug so on that same holiday 2 weeks later I drank another mushroom shake, at night, in my hotel were the atmosphere wasn’t that nice, furthermore my friend I wanted to take it with didn’t notice anything and the dosage was a bit to high for me I guess. I wouldn’t call it having a bad trip, but all of the circumstances kind of freaked me out and I really had to calm myself down throughout the trip. Anyways when I came back to Germany, my home country I ordered some mushrooms from the Netherlands, because I wanted to microdose them, for „selfhealing“ my selfdiagnosed depression that I was to scared to go to a doctor with. In December 2019 I started microdosing for nearly three month, I didn’t feel so much of the positive effects promised but I didn’t stopped smoking while doing it which might me the reason for that, sometimes the day after taking it a felt kinda dizzy and I had that thing called mouches volantes I guess, that seemed like little flys/black dots infront of my eyes, next day I didn’t have anything. Sometimes when I took the dosage in the morning and smoked werd afterwards I got really sensitive to noises which also kind of made me aggressive or I felt like I had to leave the situation. However, all of that stopped when I stopped with the microdosing. At that point I want to say that I hadn’t felt really depressed ever since, anyways I feel like I kind of changed ever since, which I haven’t really noticed as a Problem till a few month ago, that’s why I don’t know if i‘n actually having the HPPD or what it’s caused from. in the past year is started getting more annoyed of people or not really „getting“ their way of living life, I started feeling anxious about talking infront of others and felt Kindle confused when I had too, but it was just in front of my class (i’m studying health science - how ironic I know) and I started isolating myself more, but just felt that I wasn’t as dependent on others as I used too. Then suddenly I started hating the smell and taste of weed, I didn’t like the “relaxing” effects it gave me because I just felt unsatisfied with myself and not good, summer2020 I went on a vacation with my family and didn’t smoke fore 2 month, everything was fine, don’t think I ever felt that good and stable during a vacation in a long period of time. However when I came back to the city I’m studying in and to my circle of friends who is smoking weed excessively I started smoking again too, with the differences that I felt that weed didn’t have any effect on me anymore, I couldn’t smell it, didn’t really taste it, it didn’t make me tired anymore, there was still a slight change but I don’t really know what made me continue smoking, I also noticed that it got kind of Heard- for me to not smoke for a few days because it made me feel really weird, I thought I couldn’t focus as much anymore and I thought I needed it to write on my assignments, I don’t really know. I felt kind of anxious at some points when I was smoking and had those weird episodes which makes me think there might be more connection to seizures.
in the past 6 month it had happened that when I smoked time seemed to pass on “double-time” like really really fast and voices of YouTube videos sounded quite weird, sometimes when was reading it felt like it takes me less then 3 seconds to read through a pages and sometimes I could hear my heartbeat really really loud and thought it was really fast but when was measuring it everything was fine. I found this forum where people are describing similar situation but there is not a clear diagnose to it yet, some people are talking about DEREALISATION but some people are also diagnosed with SEIZURES due to those episodes were there was also found proof for it in brain storms. I can’t find an English tread where it’s described but if you type in everything feels loud and fast into google you can find treads liked to derealisation but also to partial epilepsy.
on New Years I took mdma and it was kind of weird because I needed nearly double the dose of my flatmate even though I didn’t consume it for 3 years in advance, everything felt fine and I felt happy as I always do on mdma. Next day was fine too, but that’s when I started questioning myself more and more, especially because I felt like nothing really had any effect on my mind or my body, like I was non existent. With that I’m talking about the not getting stoned anymore, being able to take very high mdma doses and just stopping to smoke cigarettes without really caring or feeling any withdrawal about it after smoking around twenty cigs for the past 8 years. I got really worried about myself even though I felt good in general, but somehow too good, like nothing really bothered me or could get close to me without the feeling of being depressed.
the experience I made that made me stop smoking weed and being scared of ever wanting to take any kind of drug ever in my life again, also made me go to a psychologist since it made me really panic. I started blaming the weird effect of the weed on me, that I couldn’t taste or really smell it on the weed because I know there was going some bad Chinese chemical cannabidoids around close to the town I’m studying in, anyways when I went to my hometown I brought some of it because I somehow got really used to smoking weed and with that I mean a lot of weed, even though I never had a tolerance with it before or anything I started rolling blunts without feeling anything the weeks in advance. Since I was kind of unsure about the weed after I heard about the chemical Chinese thing I rolled a joint and just put a little tiny amount of it in the joint, when I hitted it first I already felt anxious about it, after 4-5 hits I had to stop smoking because everything started feeling very weird for me again, I tried to do some anxiety meditation and while I was sitting on my Yogamatt my whole body started shaking even though I felt relaxed, the speakers voice got so loud even I lowered my laptops tone to the lowest and everything started speeding up, my environment started looking weird as I everything was drawn (now I know that that’s how it looks when you are derealized) but it was just so much worse then my worst state of derealisation, but somehow feeling calm meanwhile.
However, that’s when I told myself I need to stop, I already had made an appointment at the psychiatrist before that situation but there were still a few days to go which where really horrific.
I posted about those “fast and loud” situations on an neurological Facebook page where people told me about their kids having experienced the exact same and then were diagnosed with epilepsy.
now to the current situation:
I got really really anxious about what could be wrong with me, I thought I just got schizophrenia or really bad psychosis, but it was just a really bad state of derealisation and an extrem depersonalize where I couldn’t feel myself anymore and felt like someone else was talking and people started looking differently and so on and I felt tense and sweaty 24/7. The psychologist I’m still seeing weekly ever since diagnosed me with an anxiety disorder, depression and derealisation symptoms caused by a childhood trauma (my dad was killed when I was at the age of two). She prescribed seroquel/quetiapin at the lowest dose of 25mg, mainly because she thinks it heals for the derealisation which is kept up by anxiety and to relax my mind again. I took it at night before going to sleep, my bad derealisation and depersonalization actually went away and I felt really really good even though it’s a very low dose, anyways, I’m not really feeling fine with taking meds which made me anxious about the seroquel and check on google all of the time as if it was my main problem now. When reading the first “bad” experiences I started thinking about it in a more negative way even though it still made me feel as good and motivated as I haven’t felt in YEARS, which also freaked me out because I wasn’t used to feeling that good. My psychologist wants to give me the control over the medicating and leaves it up to me if I’m taking it or not, if I stop taking it every now and then to control how I’m feeling without it and so on.
right now and don’t really know what to do. I took the seroquel for 1 month now, last week I stopped taking it because I got scared of all the negative side effects I was reading about on the internet. After not taking it I didn’t have any sleeping problems, anyways I don’t feel that motivated anymore and I’m struggling keeping active as much as I did in the Seroquel. I notice those visual effects as “heatwaves”, sometimes a dot infront of my eyes when I’m reading and a thing that I can only describe as seeing the “molecules” in the air but I had those things the past year every now and then without giving them to much value.
now that I’m reading about the HPPD which might be my actual problem I don’t really know what to do anymore.
I’m scared that taking the Seroquel will disturb my self healing process if HPPD or make it last even though it might have vanished in its own after a few more month on the other hand I feel better with the Seroquel but with all the posts about Seroquel not being good for HPPD it gets me worries that I might worsen the situation or as I already said, make it stay even though it might have been gone in it’s own after a few more month.
I don’t want to try out other things but since the LAMOTRIGIN is used for epilepsy and epilepsy might show the same symptoms of the derealisation I had that I now think came from the HPPD rather then from child trauma I somehow think there could be more connection between it and I should try it out but also with that I’m scared that it makes the HPPD manifest and that it will have even worse negative side effects then the low dose of Quetiapin I’m taking. I’m reading that best thing is not taking anything which I feel too but on the other hand I felt so much better with the Seroquel and now that I’m not using it my brain fog and my unmotivatedness and my anxiety makes me feel worse and tired and I actually need to function.
I don’t really know what answers or inputs I’m hoping to get from this post of myself I just felt like I need to share everything that’s going through my mind even though it might be kind of confusing. I don’t really feel supported with those thoughts by my psychologist because as I mentioned she’s leaving it up to me if I take it or not. But I just don’t know. I can’t and I don’t want to talk to her about thinking that I have HPPD because I’m scared that she doesn’t know how to treat it and neither does anyone else around where I come from.
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.
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.
Hello guys, it's been a year since i had the same problem as you. Always exactly 1 year I took 150ug of LSD and had a terrible bad trip that traumatized me and left me sequels. I had flashbacks and I missed a lot because of it. Distorted visions in my peripheral field. All this was cured with antipsychotics, especially risperidone (I can not remember the dosage). But what it took to be cured was the emotional sequel that caused me. Psychedelic experiences transform you radically and unfortunately if you are not prepared for them it may take a long time for you to get back on track and I confess that I am not yet 100% healed of this trauma. But what I can say to you is that the worst of all this is not the visions, but the horrible thoughts that go through our heads thanks to the anxiety that causes us. And what I want to know about this post is just that. What are the thoughts that torment you because of this anxiety? Write them in the comments and we'll help each other by talking about them. For example, I used to think all the time that I was getting schizophrenic, that there would be some outbreak, over time this evolved into existential crises where I thought my soul was lost in space time and I was not living reality, just watching it (depersonalization and derealization helped in this).