By Marco S
My name is Marco, I am a 21 year old student living in Mexico. I'd like to tell you my story, my toughts towards HPPD and the lessons I've learnt from this experience.
I developed HPPD on January 2021. I was throught a bad emotional moment, due to the pandemic and a broken relationship. Since august 2020 I had decided to try LSD so I did it with a couple of friends. I did it twice, both times in parties and drinking alcohol. having as a result pretty mild experiences. I've never really been into drugs: I'd tried weed before, a couple of times, also in social situations, but I was never a regular consumer. Then on October me and one of my best friends had mushrooms, which were actually very strong. I did not enjoy it at all, but nothing bad happened after that time.
Then, at the beginning of this year, I bought acid and made the decision to have an LSD trip for the first time without alcohol or any other distraction. In fact I don't know if it was LSD or something else -based on the research I've been into these recent months it could've been N-BOME.- and had a horryfing bad trip, with lots of negativity and hopeless thoughts. The upcoming day everything changed. I almost had no sleep after the trip, as I was heading home from a holiday, and all the hallucination symptons remained more that two days. I almost had a panich attack and I had to tell my parents the situation as I thought I really needed to see a doctor or go to the hospital. Fortunately I was able to calm down and had some sleep after 36 hours.
Since then I'm on this journey. I talked with some of my friends about my syptoms but everyone told me the same: they were normal, LSD may have some flashbacks and that it was nothing I should worry about. But the weeks passed and I was not feeling any better, but the opposite. Since my university classes are online now due the pandemic, I got a job on a hostal near the beach in Mexico. My plan was to travel the country as the school allowed me to take the remote classes wherever I was. My departure was scheduled one week after the LSD trip, so I almost decided to cancel it and to stay home. But finally I decided to travel anyway and here's wher I am right now.
I must say some of my symptoms have improved a little since this started. But some have worsen at moments. Generaly I feel better than two months ago. February and March were definitely the worst period for me. I barely could not concentrate on my classes and tasks. I was drinking a lot, so I felt bad all day long. I had terrible headaches and pain in the eyes. My visuals were strong and the braing fog affected the way I talked and some of my daily activities. I decided to implement some changes on my lifestylle and they have helped me to feel better. I quited coffee and alcohol, and of course any kind of drugs. I have as much sleep as I can and I am trying also to eat healthier and to drink lots of water. It was hard for me to work out at the beginning but now I attempt to take a run three or four days a week.
Anyway I don't feel capable to do some of the stuff I enjoyed the most before this started. I used to read a lot and now it is hard for me to concentrate, and it is painful actually to read. I used to play chess, to participate in forums. I wrote for a newspaper and had a radio show. I am aware that some of this activities are hard for me now because I've lost some confidence on myself. And also anxiety makes it way worse. I've realized that when I've been capable to lower my anxiety everything feels so much better.
Traveling has been fun, but I haven't feel able to enjoy it a hundred percent. Now I am coming back home so I will experience again how it feels to have a routine and be more calmed as I won't have to work anymore and I'll have some time to rest, eat healthier and work out. I am not closed to the idea of seeing a doctor, but honestly with everything I've read about the condition I am not hopeful either. HPPD has taught me a lot about patience. I don't know if I'm ever gonna fully recover from this, but the only way I'll find out is with time. Taking one step at a time and working everday for my wellness and health.
My hope is far to be over. I am a resiliant person and I've faced pretty hard challenges during my life. I try to see HPPD as another challenge life had for me. Of course it makes life so much harder, but also it feels right to notice I've been four months now with this, and yet I've managed to keep studiyng an International Relations bachelor in one of he most demanding universities in my country, to work in some of the most beautiful and touristic places in the world, made dozens of great friends from all over the world, worked as a High School english teacher, and discovered amazing spots with amazing people, enjoying the craziest adventures.
Of course it hurts, of course it's hard, unconfortable, demanding, painful and discouraging. But I am not letting HPPD ruin my plans, goals, objectives and dreams. I'll force myself to be a more empathetic, healthy, honest and transparent human being. And also to help others and understand other people's problems. I really have to thank everyone on this forum. It has helped me a lot to understand more about this condition, the way I can live with this, and a source of inspiration and aid in some of my lowest moments.
Greetings to everyone, if you have some recommendations, tips, or you just want to have a conversation feel free to send me a message, I'd love to meet you all.
By Jacob Lesley
I was thinking there is a Visual Snow Initiative for finding the cure! Why don’t we start our own fund to find the cure? Think about it personally I am willing to put $1000+ into it maybe more if needed because this disorder is a huge burden..
if we have 18000+ members or more willing to donate for their own cure we could help ourselves.. why don’t we give it a shot I mean! What do we have to lose?
My expectation is that their is going to be a cure within 10-20 years either way but we could speed up the process by starting our own initiative to find a cure for this disorder! And personally I think there is a cure I am almost sure! We just haven’t find it yet. But we need money for research!
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.
I have engaged in many many binge drinking episodes over the last decade or so and began to suffer panic attacks during withdrawal as a result. Hypersensitive receptors? Maybe.
I developed HPPD with comorbid DP/DR in 2005 so have a feeling that all of the negative psychological symptoms are linked to this neurological disorder.
I have tried SSRIs which did naught to help my psychological problems whilst increasing my visual symptoms and am currently on lamictal (100mg) for five weeks which doesn't seem to be demonstrating much efficacy thus far.
I have been reading about the damage binge drinking can cause to our NMDA/R and am wondering if the NMDA/R might also be linked to my HPPD/DP/DR.
I also suffer from trichotillomania if that is relevant at all.
Would TMS be useful if the NMDA is implicated in what ails me? TMS on the PFC of perhaps another area of the brain?
I know positive thinking/acceptance/exercise etc. are very useful at helping on live with this conditions but really think I need the expertise of a neurologist/psychiatrist to truly make somewhat of a recovery from these disorders.
Thanks for all of your help and thank you for reading.