This might be a long one, but here goes. I've been looking at this site since the end of November, and I think I've found what's been affecting me.
I'm 22-years old; a college student living in student accommodation away from home during term. I've occasionally experimented with drugs since I was about 15 (in social groups, never alone), but it was only in the last year or so that I ever tried ecstasy or LSD – not something I've done often but I found them quite positive experiences. Both times I took acid were quite low doses, and generally njoyable experiences. The only thing I noticed was that I often get bad anxiety from smoking weed since the first time I tripped; before acid this never happened. The experiences were so positive that I became a little bit obsessed with psychedelia; the music, the art, all the hippy stuff basically. For weeks after my trips I felt more clear-minded, focused, happy and just generally appreciative of life – even when COVID lockdowns became a part of our lives last March.
After lockdown during the summer of last year I partied with friends for a couple of days straight; lots of alcohol, ketamine, and on the last day we all took a some of ecstasy. The afternoon of the day I came home I began experiencing what I think was serotonin syndrome; I got waves of panic, heart palpitations, agitation. It was very unpleasant, and it stuck in my mind long after I felt better.
My current predicament was triggered by a caffeine-induced panic attack at the end of last September; I saw a flash of light in my peripheral vision after drinking black coffee, which led to continuing anxiety, visual disturbances, panic attacks, and negative thought loops – all these symptoms seem to come in waves, there's days or weeks when they're far less apparent and times when they feel overwhelmingly intense. I even got an eye test and was prescribed glasses for slight nearsightedness, but they said there was absolutely nothing wrong with my eyes from what they could tell. I had an ECG and a blood test at the doctors too, and they said there didn't seem to be any health issues that they could see – which is good news.
Visual disturbances include visual snow (VS), prolonged after-images, floaters, blue sky ectopic phenomenon (a swirling or rapid movement effect on skies – especially on a bright blue day), as well as occasional perception of movement or lights in peripheral vision, “cracks” or vein/branch-like after-images in my field of vision just after blinking for a few minutes after I wake up, and flashes of light when the eyes are closed (when trying to sleep).
These visual disturbances often create a sense of anxiety, and distract me from everyday tasks. The anxiety tends to get worse if I'm hungover, at night, and especially when I’m trying to fall asleep. I’ve also been experiencing occasional high-pitched ringing sound in my ears (more the right ear than the left one), heart flutters/palpitations, a slight feeling of nausea (generally worse after eating), and a sudden sense of dizziness or disconnection which may trigger mental panic or turmoil. Episodes like this don’t happen frequently, but are usually accompanied by a hot feeling in my face and an over-sensitivity to noises and sensations around me, with even a relaxed living room feeling chaotic and overwhelming.
Unpleasant episodes like this tend to happen on days when I spend a lot of time ruminating about my condition. My mind often gravitates towards the idea that I may have a serious mental disorder – especially schizophrenia, despite not demonstrating the symptoms of this disorder (delusions, complex hallucinations, hearing voices, etc.). It’s more of a fear that I am experiencing what comes before a psychotic episode (prodromal period), and a feeling of helplessness and panic quickly grows out of this.
I spend a lot of time Googling symptoms of various mental illnesses as way to reassure myself that I’m not psychotic, but sometimes I think I’m subconsciously trying to confirm that I am – however labored the justification may be. I think a lot of this is mainly down to the visual issues, but also the general ‘out of sorts’ feelings I’ve had. When I’m feeling particularly out of sorts or anxious, my mind tends to feel jumbled and chaotic – a fuzzy psychedelic feeling in my mind’s eye where it’s difficult to clearly visualize things properly or think clearly. This feeling can be intense and distracting, and it often makes me feel lethargic or low on energy.
I also have trouble sleeping, or rather trouble going to sleep before 12 am. This isn’t a new thing; it has been a recurring issue for me for the last four or five years, but never as consistently problematic for my mental health (being due to anxiety or visual issues), and I was rarely ever kept awake when I wanted to sleep. These sleep problems often mean I wake up and fall asleep again multiple times every morning and struggle to fully get up before 11 am, and I think this effects my productivity for the rest of the day. I don’t feel well-rested when I wake up, so I think this messes with my mood throughout the day.
Today I had the worst panic attack of my life; in broad daylight on a pleasant day at home surrounded by my family. I haven't taken anything (even alcohol or cigarettes) since before Christmas, so that hasn't added to my problems thankfully. I began to fixate on the sense of movement in my peripheral vision and visual snow, which set off my anxiety in an extremely intense way and it has taken all day to calm myself down.
After talking with my parents we agreed it might be time to see a doctor; this isn't going to go away easily and I just want to rule out any other possibilities.
Apologies for the length of this post, I just had to get it all out. Thanks for taking the time to read this and I would appreciate any advice. I will post an update if my symptoms change, and I'll try to keep up to date on any future developments.
My name is Alex, I'm a third-year psychology student at University Greenwich (London, UK).
Although I don't have HPPD, I'm very interested in understanding more about it. As such, my final-year research project is a survey investigating individual differences and HPPD.
My research project is under the supervision of Dr. David Luke, a long-standing psychedelic researcher in the UK and author of many books on the subject. Dr. Luke is a senior lecturer at University of Greenwich and honorary senior lecturer at Imperial College London - the home of the bulk of psychedelic research in the UK. I'm really only trying to use his credentials to verify that this research is a serious undertaking, not just to name drop him. I would love to hear from members of this community and hope you can find the time to have a look at my survey linked below
The survey should take between 15-30 minutes to complete depending on your individual history and experiences. Your response will help deepen the understanding of potential differences amongst sufferers of Hallucinogen Persisting Perception Disorder. All submissions are anonymous (identifiable only through your unique personal code) and data will be stored on a password protected device. The research has been ethically approved by the Departmental Research Ethics Committee for Psychology, University of Greenwich, UK.
Many thanks if you have the time to spend helping me out.
If this is better posted somewhere else please feel free to let me know,
Given this is my first ever post I'll apologise for getting it wrong in advance!
Any questions feel free to drop me an email on firstname.lastname@example.org
Hi there. I've had HPPD since I was about 19... so going on 16 years now. I won't get into all the details but what I'm wondering is if anyone has resolved, or read about someone who resolved their Blue Field Entoptic Phenomenon (BFEP)? This is probably one of my most annoying symptoms and is prevalent on any large bright surface. Central vision and peripheral.
Any feedback would be much appreciated.
By Zara ibn Derra
I will try to tell my story as authentically as possible - but what I can say is that I am cured (in a sense)! And I am writing today because I would have liked to read more positive stories when I was at my worst:) I am joining the community to share my experience and give support when possible.
Drugs before HPPD –
I had my first joint when I was 14. And I smoked a lot since then. Between 15 and 17 - I smoked almost every day. I graduated from high school when I was 17 and moved to another city.
There, I tried Mdma and cocaine (I had just turned 18) - I really liked molly. I took some in considerable quantities! I think that on this first year, I had more than a hundred experiences with crazy dosages (I took more than a gram + 2x once). I lost weight and became rather depressed – low serotonin level and I continued to smoke every day which ofc did not help.
LSD and HPPD/Depersonalisation/Derealisation –
At the end of my first year, I went to Berlin for the holidays. I tried acid for the first time. Great experience! Really incredible with really nice sensations. It helped me a lot, and I was able to open my eyes to a lot of things, including my exaggerated consumption of Mdma.
Coming back from Berlin, I spent a few weeks where I felt really good, complete. But I was already starting to notice that my vision was not really the same, especially when I smoked pot. More I gave it attention and more it became overwhelming. I was able to manage it till the day I had an intense panic attack. Afer that, I started having a lot of derealization and depersonalization episoded. I no longer recognized myself when I looked in the mirror and felt like I was stuck in a dream.
So here I am, 19 years old and completely fucked up. And a vicious circle is set up : Anxiety-HPPD-depersonalisation-derealisation. I still managed to get used to it and to maintain social relationships (at that point, I am depressed and I feel miserable - I was sure that this will last forever). I'm keeping doing Mdma (it was a sort of consolation I think), which did not help - the comedowns were particularly horrible and sometimes I felt like I'm looking at life through a window, that I am trapped in a body which is not mine and that everything is just an illusion for days on end. I do not suffer from insomnia, but I sleep and wake up with exactly the same feeling of derealization and depersonalization.
In fact, I have never told anyone about it. I tried at the beginning (the first days my HPPD appeared) to share it with one of my close friends but since he didn't seem to really measure my distress, I quickly understood that I was in this alone... I did not know this forum at the time.
Getting used to my HPPD, then a difficult LSD experience –
Well... So, 2 years went by like that. I still have the same issues, but I am quite used to them. I still take some ecstasy, but I manage it better. I even tested mushrooms and a low dose of LSD which did not really make my visuals worse. My anxiety is mostly social at this point - it feeds off my HPPD.
At 22, I decided to take acid again with friends. I do not really decide - I let myself get carried away by something weird, probably stupidity:). Anyway, I took some more. The dose was pretty high (less than what I tested in Berlin but still serious). The trip went well but the comedown was horrible for me. I will pass you the details because this is not a trip report but what you need to know is that all my friends were down (after 12 hours tripping balls) but I was still really high. People were starting to sleep, and I felt like I was stuck in the trip with mid-hallucinations still happening at this point. It would not go away. I could not sleep while every single person was able to. I was stuck!
So here I am – I am going through the worst anxiety of my life. I am questioning my sanity – I just want to go to the hospital, to be fixed. 24 hours later the trip, I am still hallucinating (distortions amplified by anxiety). Somehow, I managed to sleep – I think my brain and body could not take it anymore.
I wake up 8hours later. I give a shout of joy! I am not hallucinating anymore; I am back! However, my HPPD is really strong now with serious derealization episodes and anxiety attacks the following weeks.
Philosophy and playing with HPPD –
After that trip, I decided to take a maximum interest in how to control my states, my thoughts - I discovered stoicism and meditation in the months after the trip. And all the philosophies that are focused on self-control, ego, purpose, nihilism, existentialism etc. Actually, I became interested in all the wise people who were willing to teach me how to live. I applied the theories I read and I started "playing" with my HPPD and my anxieties – I observed them, let them dominate me, try to dominate them sometimes. In fact, they had become my companions. And my view of them had changed. Instead of thinking that my HPPD was something terrible, I thought of it more as the memory of a life-changing experience... and as I changed my view of it, the suffering was gone!
HPPD could be triggered by some situations sometimes but I was now able to ignore it... In fact, the one lesson I learned regarding this condition is: Decide to ignore your HPPD and it will no longer be a source of anxiety and despair.
My life now –
Today, I am 25 years old - I have a very good situation with a job that requires a lot of concentration and I can manage without any problems [When I was at my worst, I couldn't look at a screen or read a book for more than 10 seconds without everything starting to breathe/move quite heavily]. I started sport and I lead a rather positive life. In any case, my HPPD is no longer central in my life. I am cured.
My anxiety still exists but it is not fed by HPPD, it has deeper origins. In fact, and strangely enough, this HPPD experience helps me to calm my anxiety because knowing that I have been able to overcome it (and the derealization and depersonalization it has caused) really gives me confidence in my strength! As Nietzche said: what does not kill me makes me stronger! And that is exactly what happened. With my curiosity and the help of a few wisemen, I got out of an incredibly negative loop.
I still enjoy techno parties and take ecstasy sometimes with 0 problem. However, weed still makes me anxious... Except some rare moments when I am really relaxed (and alone). Also, I am now having some thoughts on taking shrooms... I don't know if I am gonna do it! I will let you know:) It will probably be really light doses.
I wanted to say that my HPPD has not totally disappeared, it is my relationship to it that has changed! I can do whatever I want with it – it is my superpower in a way. When I am sitting in a bar for example, waiting for someone, I can make the letters on my phone breathe and it's fun, whereas 5 years ago it was overwhelmingly confusing, and I had no control of it.
This is my personal story – I wanted to share it to say that it is possible to get out of this! Good luck to all of you and if you suffer, please let me tell you this: If you can't change this thing that's happening to you, change the way you look at it.
Hello my friends,
I'm writing an article for The Independent about HPPD. I'd like to talk first-hand with sufferers of the disorder and document their stories. This article will spread awareness about the risks of psychedelic drug-taking and show what can go wrong.
If you're interested in having a short chat or sending a summary of your experience with HPPD, then please email me at email@example.com. You can be anonymous on request, don't worry.