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!
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.
"BPC-157 is a synthetic peptide that is being investigated for its regenerative effects. It shows high efficacy for rats suffering toxic or surgical trauma, but there is currently no evidence that it provides benefits for people."
I stumbled upon this peptide after browsing some websites and then I found reddit posts of users claiming that they cured their anhedonia. This substance does not mask symptoms like traditional drugs, but really has some sort of a healing mechanism that rapidly undoes damage from the dopamine system, with almost no side effects reported. This got my interest and I decided to try it out. Here are the results:
250mcg in the morning and 250mcg in the evening, administered with subcutaneous injections. So far I have used a total of 10mg in around 10 days, and I'm planning to do extra cycles in the future.
While injections offer the best bioavailability, it is reported that this substance is stable when taken oral. I cannot confirm this and I'd recommend to inject the substance, or use it sublingually (under the tongue). Subcutaneous injections are almost painless and you'll get used to it quickly.
I'm experiencing permanent benefits from this trial. In general I feel much calmer with myself and my mind is so much clearer. My sense of time has changed back to normal. It feels like the world around me is moving normal again and I can get more done. I'm even boring myself when I'm free. Before this trial I would be able to do a lot less in an hour and it felt like the time shifted faster, and it felt I couldn't get a hold of the world moving around me.
Cognitive functioning has improved a little, I mostly feel benefits from taking fish oil and I believe this substance has contributed to it Depersonalisation and derealisation has definitely improved. Most of the time, it doesn't even bother me and I feel more attached to myself My anhedonia has decreased, I didn't experience a huge improvement but it's still much better I feel generally less anxious - I haven't worried about my condition since My visuals have not changed in any way, but the substance helped me to handle them easier and they don't feel like a big annoyance anymore.
I did not experience any side effects, which is good. There is some research suggesting that it increases tolerance to amphetamine, but it hasn't been tested on humans.
I definitely recommend anyone with HPPD to try this substance. It might help you a lot with depersonalization and derealisation, as it did with mine.
After a lot of research, i came across this medical review : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736944/Very interesting and rare hppd study.
Overall, it seems that Lamotrigine has been able to cure long term HPPD like mine is , and for good, or significantly decrease visual disturbances and symptoms.
I'm actually testing nootropics on many levels, but i'm willing to step-up to more epileptic oriented drugs.
Anyone has more input about Lamotrigine on long lasted HPPD (mine is about 20 years old...) ?