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.
I recently developed HPPD and have had a ton of trouble sleeping, so my doctor recommended I try a dosage of one 3.5 mg Zopiclone tablet per night. For the first time in a couple weeks or so I managed to get more than 3-5 hours of sleep (got around 9 hours of sleep) and felt refreshed the next day; the next night went smoothly as well. However I can notice my visual symptoms feel worse than usual. I was wondering if there are others on here that have had similar experiences. Should I stop taking the prescription altogether? Is there any conflicting side effects known with HPPD and Zopiclone that I should be concerned about?
I personally have mild hppd for 2 and a half month and today I will start my Keppra medication. Brand name Keppra.
I am taking 250mg daily and will increase the dosage to 1500mg over the course of the next months. Maybe I will go for 2000mg or 3000mg in the long run.
I will write an update whenever I feel my symptoms decreased.
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.