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.
I smoked first time 0.2 No effect, no withdrawal.
I smoked week later 0.2 acid Panic attack, little trip, lasted 15mins. Withdrawal, irritable 3days.
Smoked month later 1.0 (Strong unknown, not wet(i think non acid) high fun
Next day 1.0 high fun.
Here we go... First strange thing i noticed, third day i was high in afternoon without weed. Normal week, clear brain. I drunk 0.5l of vodka and next day i got all visual snow symptoms. I was so stressed that i damaged my brain for 2months. Last 2months (4months of visual snow) i started to see things.. some sort of faces or eyes in front of me. Faces and strange objects in corner of eye.
I'm not in psychosis. I know whats real and not even with depersonalization. I can imagine sounds(that happened before, like dog bark or something) or stuck them for minutes.
I'm schizophrenic or what? These hallucinations are so strange... Will i heal after all? For now ofc i want to heal my hallucinations but visual snow is destroying me too.
I hope we will all heal from this.
P.S. I stopped everything after visual snow. No drugs, No alchogol, fuck this shit really.
I’m a newbie. I found this forum a couple of months ago when I googled ‘can lsd change your peripheral vision?’
What a ride that was!
After a week of intense anxiety, I retook control of my narrative and all symptoms generally subsided. So I assumed it wasn’t HPPD.
On Sunday, I had a quarter tab and now I’m quite certain it is.
I’m quite self-aware and I write for a living, so I may be able to put into words some of the things people struggle to describe. If so, I hope it’s useful.
I think (/hope) that my case is mild but I guess we’ll see.
I’ll start with my history, then the episode that led me to this forum, and lastly the most recent episode.
I’m 39. I never had drugs before the age of 37. I’ve had probably a lot of mdma, a fair amount of ketamine, a little bit of cocaine, weed four times, acid four times, and mushrooms once.
I have adult ADD, which became apparent at the age of 35.
I have a history of generalised anxiety, and a couple of periods moderate depression, initially managed by Lyrica (Pregabalin) and Wellbutrin (Bupropion - which was chosen because it acts on Dopamine rather than Serotonin - ADD). But it was actually mindfulness and journaling that really managed these conditions.
I have ALWAYS had quite vivid dreams, often lucid.
I have ALWAYS had hypnagogic closed eye visuals - waves of colour moving in concentric ‘circles’ inwards to the centre or outwards from the centre. Usually green, sometimes mixed with purple and blue. In a really dark room I can still perceive these with my eyes open.
I have ALWAYS had hypnagogic auditory hallucinations. Like I’m processing everything I’ve heard that day. Sometimes it’s voices I absolutely recognise (family mostly) but saying things I don’t think I’ve ever heard them say.
I’ve ALWAYS had trouble falling and staying asleep. I have often also been aware of levels of consciousness in the process of falling asleep. And it does feel like falling (like a physical sensation in the brain) from one level to the next. Sometimes, if I pay too much attention, it actually wakes me up.
The first episode
During the month-long run up to Mardi Gras here in Sydney, I had a weekend where I took two half-tabs of acid over the course of a day (along with a mix of mdma and ket at various times during that day).
Nothing curious happened that weekend. But two weeks later, mdma behaved quite differently. I was getting the geometric visuals that I had previously experienced from lsd, but I hadn’t had any lsd. That same evening, in a fairly dark room, I began to hallucinate that each person who’s face I focused on was wearing Harry Potter-style gold wire-rimmed glasses. Which I knew was not the case and when I concentrated, the glasses disappeared.
During the following week, I would sometimes catch the faintest echo of geometric patterns over uniform white backgrounds, such as walls in my apartment. Tessellating hexagons. When I closed my eyes I could see millions of microscopic red and green dots against the black background. This is what I believe translates into visual snow when the eyes are open (especially in dark rooms). In the corner of my eye I would catch a momentary movement of something dark, that turned out not to be there. Any small dark speck, like a crumb, or a stone, would momentarily appear to my peripheral vision as a tiny insect, until I looked at it directly.
That is why I googled and found out about HPPD.
I didn’t have ANY anxiety... until I read about HPPD. But for 48 hours it spiralled. Dark rooms at night were menacing, which made me unconsciously resistant to going to bed/sleep.
Given my history with anxiety, I immediately returned to journaling and mindfulness. It took away the power that this concept of HPPD had over me, and everything seemed to return to normal by the Friday.
And it didn’t recur after a weekend with just mdma.
So I chalked it all up to anxiety and moved on.
The most recent episode
So, on Sunday I had a quarter tab. Wasn’t even enough to have a noticeable effect on the day.
Monday was fine until nighttime. My sleep was restless and filled with dreams, lucid dreams, and non-REM dreams where the dream continues even in a state of being half-awake.
It was the closest I came to experiencing Inception.
In one dream I experienced the physical sensation of dizziness. Quite clearly. Usually dreams are conceptual and abstract. This was just like being awake.
In another dream, I could read actual text (which I’ve always been told is impossible, as the language/meaning processing centres in the brain are not active while dreaming). I was sorting an email inbox alphabetically, and scrolling down to the word Seneca. I consciously spelled it out in the dream.
Daytime on Tuesday was fine. Nighttime was awful. In one dream, I was in a car chase on the street where I grew up. We sped up to get away from a police car and turned a sharp corner. I experienced the centrifugal force just as though I was awake. I chose to wake up at that point.
Today I have had a low-level dizziness all day. A strange dizziness that is difficult to describe, but I’ll give it a go.
A dizziness that feels like it is affecting your balance. You feel like you’re staggering slightly to the right, but you’re actually walking dead straight. Only really happened when I was moving.
A dizziness that feels like six pints of lager drunk, but with absolute mental clarity.
A dizziness that feels like the moment before vomiting, when your blood pressure drops, mixed with the feeling of an adrenaline rush concentrated in a horizontal plane through the middle of your head, starting dead centre and spreading outwards.
And a dizziness that feels like the absolute fatigue of sleep deprivation, and you have the physical sensation in your head at the point that you start microsleeping.
It’s now 1:30am and I’m typing this out because I had a night terror, and what I think is a form of DP/DR. I felt a sort of paralysis in my arms, but also a field of energy that started just outside the skin of my arms up to my elbows, and I perceived it for maybe 3-5 cm surrounding the arms. This was probably in the halfway state between awake and asleep. Shortly afterwards I became aware that I was breathing very fast and shallow, like a panic attack, but I knew I wasn’t awake yet. I knew and was aware that my boyfriend was sleeping behind me. I was aware that he had stirred. But I was trapped. I yelled out ‘Help!’ but apparently this was just in my head.
He woke me; cuddled me; calmed me.
I can’t go back to sleep though.
This is probably what I would have written in my journal, but it may be useful to others. And others may have insights that will help me.
If you’re still reading, thank you, and I hope your experience with HPPD is improving.
Hi Everyone! It's very rare for me to use online forums however due to this disorder being so rare I thought it'd be the best way to meet new people who have experienced similar things.
My name is Neve, I am 18 years old and currently a University student in England. I've never been that adventurous with drugs and up until university I had only ever touched weed, even then it only being a round 5 times (first time being 15 years old).
When I started university, naturally, I became more exposed to drugs and tried LSD for the first time and again a week later. Both trips I really enjoyed and got the typical experience (enhanced colours, sensations, patterns and sound etc..) It wasn't until I experienced 'flashbacks' on a random Tuesday night. My flatmates were smoking weed however I didn't due to feeling ill. I'm not sure if it was me being ill or the secondary smoke or the combination however I began to experience the same visuals and sensations as I did on my second trip (which was a lot more intense). I was convinced I had accidentally took acid or something..
One of the main things I noticed was colours changing/morphing into new ones, floral patterns and materials looking like they had layers; almost as if things were floating and breathing. At first I thought it was quite cool and I viewed it merely as a pleasant visual that would last a few hours. It has been almost 3 months since that experience and nothing has changed.
It would be interesting to see how having HPPD has affected peoples lives. I try and just go with it, however, recently I have been struggling with it. I have never suffered with mental health issues (not that intense anyway) yet since starting university, my anxiety has been at its peak. Whenever I feel stressed or tired, my visuals enhance thus increasing my anxiety often resulting in panic attacks. After lots of research reading articles, watching documentaries etc, it seems incurable and something that I may just have to live with. Again, it would be really nice to meet people and learn about each others experience with Hallucinogenics.