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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

K.B.Fante

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  1. (Already posted this in a separate thread but thought I'd repost here since I consider this my official and perhaps final recovery post) Hello everyone, Just wanted to post another update about my recovery... May 8 was my official five-year anniversary of getting HPPD. I can't even begin to describe how transformative and painful the last five years of my life have been. I almost can't even believe I'm still alive. HPPD is unlike anything I've ever experienced or anything I could even imagine experiencing. It's truly an otherworldly disorder I wouldn't wish on any living creature, even the most despicable of humans. This is especially true for those who have HPPD in conjunction with severe depersonalization, derealization or Alice in Wonderland Syndrome. It is one thing to suffer visual impairment but to actually feel like you're living in a dream and not be capable of identifying reality from fiction is another mindf*^k altogether. I feel so, so much sorrow for those of you enduring such mental diseases. They are truly the worst thing I've ever endured and I can't imagine mental suffering feeling any worse. The fact we do not have proper representation, understanding and attention in the medical world is beyond an injustice. I hope we can someday get to the point where our suffering is not only validated professionally but also addressed and perhaps even mitigated medicinally. Anyway, I don't have much to say that I haven't already said before. The last five years of my life have changed me in ways I never could have imagined and will have lasting effects on everything I do for the rest of my life. I do consider myself fully recovered from HPPD since it no longer prevents me from doing anything I want, however some of my symptoms are still very mild and I imagine will be present in some form for a long time, mostly just lowgrade visual snow and streamers at night or when I'm really tired or have had way too much caffeine. But in my day-to-day life HPPD isn't an issue. It's hardly noticeable and even when present it isn't strong enough to elicit any sort of anxiety or distress. It's very similar to a scar -- there but no longer the source of any pain. I remember when I first got HPPD praying for a cure, praying for help, praying for anything -- which was strange as I considered myself an atheist at the time. Why was I praying? To what god? And what form did I expect a savior to arrive? The truth is that HPPD was so painful and I was so lost and bereft of answers that praying was the only thing left to do. Less than a year after getting HPPD I became suicidal and as my one-year anniversary approached I nearly went through with killing myself after I felt I exhausted all my options and didn't see anywhere else to turn. Of course now I'm praying for a different reason -- now I'm praying to whatever higher power there is out of pure gratitude for still being alive. Every day I wake up I feel I'm playing with house money. Everything I see and feel is like a miracle. Life itself feels like the greatest gift imaginable. Nobody should have to endure the most severe forms of this condition and yet somehow I managed to hang in there for well over a thousand days, battling from sunrise to sundown just to make it through the day. But I'm so thankful I did. I don't feel like I deserve this life I have, almost as if I suffer from survivor's guilt, but yet I'm so appreciative at the same time. I'm still battling additional health issues but my life is good right now, better than it ever was even when I was "healthy" before. I've been living with my partner in a little cabin in the woods during the lockdown and I feel so lucky to experience life with her. I'm just completing a volunteer program to help plant trees throughout the city. I'm in good shape both physically and mentally -- the best I've ever felt. I'm seeing a therapist and resolving the childhood trauma that I feel got me HPPD in the first place. And best of all I'm taking steps to going back to grad school in the next year or so. I'm truly accomplishing all my dreams and this is just something I never thought I'd be able to do even a few years ago. If anyone is curious how I got to where I'm at after slaving away in the pits of HPPD hell for years I suggest reading some of my past posts. Everything you need to know about my healing process is there. Also if anyone needs to talk or just wants to reach out please feel free to message me. I don't check this site nearly as much as I used to but I'll try and get back to you when I can. I do think having people to talk to who understand your experience is one of the most important aspects of dealing with this condition. I hope that at some point in the future we can organize some kind of conference or just a meetup at various locations around the world so people don't feel as alone -- perhaps even video or phone calls if the pandemic extends indefinitely. Lastly, I'd urge people in the initial stages of HPPD to maintain optimism and perseverance above all else. There are many pessimistic posts on this site and rightfully so given the nature of this condition, however it's important for our survival (quite literally) that we value the experiences of those who've recovered and learn from them so that we can perhaps begin to create a template for how to cope and heal from this condition moving forward. People like me and many others on this site are proof this is something that can be overcome, however it's also the hardest thing you'll ever do and it takes years of fortitude in the face of extreme distress and darkness. It's just so important to realize there is a light at the end of the tunnel and but also that it takes a monumental amount of work to get there. On this same subject, I just wanna point out one of the most crucial aspects of healing isn't what you do but also what you don't do. Sure exercise, meditation, therapy, eating healthy, socializing, yoga, spirituality, nature, sunlight and natural medication are vital to the recovery process but just as important are all the things you don't do: drugs (most importantly), fast food, toxins, sedentary lifestyle, isolation, darkness and so on. We're constantly bombarded by poisons every day in the modern world and it's just so important to avoid those things if you want to give your body and mind a chance to heal. If you're eating healthy and exercising but also taking drugs and isolating then you're negating any positive inputs you're attempting to incorporate into your lifestyle. Healing from HPPD is truly as much about shedding past toxic behaviors, belief systems and lifestyle choices as it is implementing new ones. Given how good I feel I may not post for my six-year anniversary but I will nevertheless read this site from time to time, especially for news. That said, if I keep continuing to recover I'll post an update a year from now. In the meantime I pray everyone gets the help they need and takes the necessary steps to address the underlying issues that result in HPPD. I know it may not seem like it but life is worth living. It always is. If you just stick with it you will eventually see the payoff. Sometimes it just takes a lot longer than we'd like to believe. Take care, -- K.B.
  2. Hello everyone, Just wanted to post another update about my recovery... May 8 was my official five-year anniversary of getting HPPD. I can't even begin to describe how transformative and painful the last five years of my life have been. I almost can't even believe I'm still alive. HPPD is unlike anything I've ever experienced or anything I could even imagine experiencing. It's truly an otherworldly disorder I wouldn't wish on any living creature, even the most despicable of humans. This is especially true for those who have HPPD in conjunction with severe depersonalization, derealization or Alice in Wonderland Syndrome. It is one thing to suffer visual impairment but to actually feel like you're living in a dream and not be capable of identifying reality from fiction is another mindf*^k altogether. I feel so, so much sorrow for those of you enduring such mental diseases. They are truly the worst thing I've ever endured and I can't imagine mental suffering feeling any worse. The fact we do not have proper representation, understanding and attention in the medical world is beyond an injustice. I hope we can someday get to the point where our suffering is not only validated professionally but also addressed and perhaps even mitigated medicinally. Anyway, I don't have much to say that I haven't already said before. The last five years of my life have changed me in ways I never could have imagined and will have lasting effects on everything I do for the rest of my life. I do consider myself fully recovered from HPPD since it no longer prevents me from doing anything I want, however some of my symptoms are still very mild and I imagine will be present in some form for a long time, mostly just lowgrade visual snow and streamers at night or when I'm really tired or have had way too much caffeine. But in my day-to-day life HPPD isn't an issue. It's hardly noticeable and even when present it isn't strong enough to elicit any sort of anxiety or distress. It's very similar to a scar -- there but no longer the source of any pain. I remember when I first got HPPD praying for a cure, praying for help, praying for anything -- which was strange as I considered myself an atheist at the time. Why was I praying? To what god? And what form did I expect a savior to arrive? The truth is that HPPD was so painful and I was so lost and bereft of answers that praying was the only thing left to do. Less than a year after getting HPPD I became suicidal and as my one-year anniversary approached I nearly went through with killing myself after I felt I exhausted all my options and didn't see anywhere else to turn. Of course now I'm praying for a different reason -- now I'm praying to whatever higher power there is out of pure gratitude for still being alive. Every day I wake up I feel I'm playing with house money. Everything I see and feel is like a miracle. Life itself feels like the greatest gift imaginable. Nobody should have to endure the most severe forms of this condition and yet somehow I managed to hang in there for well over a thousand days, battling from sunrise to sundown just to make it through the day. But I'm so thankful I did. I don't feel like I deserve this life I have, almost as if I suffer from survivor's guilt, but yet I'm so appreciative at the same time. I'm still battling additional health issues but my life is good right now, better than it ever was even when I was "healthy" before. I've been living with my partner in a little cabin in the woods during the lockdown and I feel so lucky to experience life with her. I'm just completing a volunteer program to help plant trees throughout the city. I'm in good shape both physically and mentally -- the best I've ever felt. I'm seeing a therapist and resolving the childhood trauma that I feel got me HPPD in the first place. And best of all I'm taking steps to going back to grad school in the next year or so. I'm truly accomplishing all my dreams and this is just something I never thought I'd be able to do even a few years ago. If anyone is curious how I got to where I'm at after slaving away in the pits of HPPD hell for years I suggest reading some of my past posts. Everything you need to know about my healing process is there. Also if anyone needs to talk or just wants to reach out please feel free to message me. I don't check this site nearly as much as I used to but I'll try and get back to you when I can. I do think having people to talk to who understand your experience is one of the most important aspects of dealing with this condition. I hope that at some point in the future we can organize some kind of conference or just a meetup at various locations around the world so people don't feel as alone -- perhaps even video or phone calls if the pandemic extends indefinitely. Lastly, I'd urge people in the initial stages of HPPD to maintain optimism and perseverance above all else. There are many pessimistic posts on this site and rightfully so given the nature of this condition, however it's important for our survival (quite literally) that we value the experiences of those who've recovered and learn from them so that we can perhaps begin to create a template for how to cope and heal from this condition moving forward. People like me and many others on this site are proof this is something that can be overcome, however it's also the hardest thing you'll ever do and it takes years of fortitude in the face of extreme distress and darkness. It's just so important to realize there is a light at the end of the tunnel and but also that it takes a monumental amount of work to get there. On this same subject, I just wanna point out one of the most crucial aspects of healing isn't what you do but also what you don't do. Sure exercise, meditation, therapy, eating healthy, socializing, yoga, spirituality, nature, sunlight and natural medication are vital to the recovery process but just as important are all the things you don't do: drugs (most importantly), fast food, toxins, sedentary lifestyle, isolation, darkness and so on. We're constantly bombarded by poisons every day in the modern world and it's just so important to avoid those things if you want to give your body and mind a chance to heal. If you're eating healthy and exercising but also taking drugs and isolating then you're negating any positive inputs you're attempting to incorporate into your lifestyle. Healing from HPPD is truly as much about shedding past toxic behaviors, belief systems and lifestyle choices as it is implementing new ones. Given how good I feel I may not post for my six-year anniversary but I will nevertheless read this site from time to time, especially for news. That said, if I keep continuing to recover I'll post an update a year from now. In the meantime I pray everyone gets the help they need and takes the necessary steps to address the underlying issues that result in HPPD. I know it may not seem like it but life is worth living. It always is. If you just stick with it you will eventually see the payoff. Sometimes it just takes a lot longer than we'd like to believe. Take care, -- K.B.
  3. Hey guys, So I just wanted to post a reminder that symptom aggravation can be caused by an entire range of invisible substances and molecules we can't see with the naked eye or even know exist. Since getting HPPD my symptoms have been aggravated by stress, caffeine, sugar, high-glycemic carbs, nightshades (tomatoes, peppers, ashwaghanda, etc.), nutmeg, mold and most recently some kind of chemical leak in a house I moved into. It's just really important to keep in mind that if your symptoms begin to worsen out of nowhere that there's an environmental culprit as to why. I see so many posts talking about symptoms worsening and not knowing why and after five years of dealing with this I completely understand, just as we all do, however it's just crucial to examine your diet and lifestyle and any changes in your environment in order to nail down why and eliminate that substance. A recent example for me was moving into a house where when the heater was on I would notice my symptoms got progressively more exacerbated and so I removed myself from the house and my symptoms went back to baseline. I have no idea what the actual cause was but I did what I had to in order to maintain my health, which is really all you can do with this condition. And also, it gets better. As long as you live a healthy lifestyle you will be able to cope and heal.
  4. I think almost all CBD contains even trace amounts of THC. I've taken it for about a year and it really helps me relax. Your best bet would be to buy a tincture and try a few drops to see how you feel, then steady increase the dose. I really don't think you can hurt yourself doing it that way. There's just not enough THC to really have a major impact as long as you dose small and work your way up.
  5. Hey guys, just wanted to drop in and post an update on my HPPD recovery... In another six months I'll have my five year anniversary of when I first got HPPD. I've posted every year on that day and I plan on doing so again in six months but something just triggered me to want to post now. Basically I'm updating a lot of stuff on my computer and I went through old notes I made when I first got HPPD. I hadn't read them in three years. It was surreal to see how far I've come. So much of my notes were about how painful life was each day, how I could barely make it through, how HPPD was like hell and how I thought of suicide constantly. I also had severe depersonalization which I wouldn't wish on anybody. I literally couldn't tell whether I was alive or not when I first got it. It was really bad. Though I'm not fully healed and still have minor symptoms of HPPD (mostly visual snow, occasional tinnitus, some afterimages at night, etc.) I'm also at the place in my recovery where I'm able to move on with my life, and that's truly a miraculous thing to say considering where I was even two years ago. This point I've arrived at is all I ever wanted when I was living in a 24-7, Alice-In-Wonderland hellscape of a constant lowgrade acid trip. I would have given anything to be where I'm at today. And yet, here I am, and it doesn't seem so special because HPPD takes so many years to heal from. As many of you know this disease is not something that just disappears overnight. It takes many years of backbreaking work to improve, but I'm proof that if you're willing to put in the work you can get to that place. If I could impart any advice on those who are suffering right now and don't have much hope I'd really emphasize the power of natural healing. The body is a healing machine. It's designed to repair itself at all times. The main hindrance is of course interfering with this process by causing your body even more damage than it can handle and our modern world is essentially a barrage of micro and macro insults to this repair system. My true healing journey began when I put down the fast food, spent countless hours in nature and in sunlight, always kept my body moving, nourished myself with natural foods and medicinal plants, embraced the power of love and took steps to face my own personal demons and confront my childhood trauma that manifested in the anxiety that got me HPPD in the first place. If you're at all stuck or just wondering how you go about navigating a healing journey I really hope you'll consider getting back in touch with nature and letting evolution do what it's been doing for billions of years on this planet. I don't mean for this to sound too woo woo but I just know it works because I tried everything and natural medicine in combination with time is the only thing that gave me actual results. Please stay hopeful if you're able. I understand as much as anyone how distressing and hopeless this disease can be so I'm not gonna lecture anyone on how they should see things, but I do believe there's almost always reason for hope with anything, even this bastard condition. If anyone needs help or advice or just someone to talk to please don't hesitate to reach out. -- K.B.
  6. In my experience HPPD can be exacerbated by a lot of stuff but toxins are the worst offenders next to drugs. I got exposed to mold four months ago and essentially had a relapse, all symptoms worsening quite a bit. There are number of stories on here about people getting HPPD from certain situations with lots of chemicals and toxins around. I think I read someone getting it from some kind of hair procedure too. Only thing you can do is whatever you did before to get healthy. I'd stay away from artificial procedures too. People with HPPD just react differently to things most people can handle.
  7. This is really incredible. I've been on this forum for close to four years now and have never seen anyone try and tackle HPPD this professionally before. Thank you so much for your dedication to bringing awareness to this condition. Have you thought of doing any cross-pollination research with the Visual Snow Syndrome or Depersonalization community? All three of these conditions essentially have the same features (mostly visual snow, anxiety and depersonalization) yet it's strange how there has yet to be a unifying community or even a basic connection between the three online.
  8. I tried homeopathy and definitely felt something, although it could have just been placebo. If you think it could help and won't make your HPPD worse and are willing to take the chance then you should give it a shot. The homeopathic medicine I took was cannibis infused and I didn't experience any averse side effects. I don't think there's much risk but I also don't think you're gonna "cure" yourself. HPPD isn't really something that can be instantly reversed.
  9. Found the 5-HT receptor stuff especially interesting considering the possible links with HPPD. Lots of relevant HPPD connections everywhere in this article. https://www.sciencedirect.com/science/article/pii/S2352289516300509
  10. We've all been there before so don't feel bad. That's what this community is there for. Like Jay said, you gotta sleep. I've been down the road of insomnia and there's nothing but disease at the end. I'd encourage you to meditate at night, light some candles, incense, play some relaxing music, drink some chamomile or sleepytime teas, read in low light, perhaps even take a relaxing bath. Sleep for a lot of us is really about turning off your brain from thinking. It'll get better. I know it's not the best advise but I've been in the to the very bottom of hell and back and yet this is a constant throughout. It simply cannot stay bad forever. Get your foot in the door and just make a tiny bit of progress each day, whether that's eating right, exercising, going to therapy, posting on this site, taking a walk, riding a bike, hiking, driving, just find something to basically take the edge off. Keep doing this over and over and eventually you'll chip away at it.
  11. Interesting article that discusses the science behind why a diet high in fiber is good for the brain. Two of the most discussed neurotransmitters on this site are GABA and serotonin, both of which are derived in the gut from the foods we eat. If you want more seratonin and GABA you best eat a diet with lots of veggies! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903954/
  12. I've been doing this every year for the last four years since I got HPPD on May 8, 2015. I can't put into words how much I've been through and how much my life has changed since that day. I know a lot of people here understand what it's like, but trying to explain this to your everyday normal person feels impossible. I just never imagined in a million years my life would turn out the way it has. I actually had a major setback a few months ago from a mold exposure where I basically had HPPD all over again except on a much smaller scale than the first time. Three months later I still feel disconnected from my body a bit (worsened streamers mostly), but it's to the point where I don't notice it hardly at all as long as I eat right and avoid inflammatory foods which always make it worse. Speaking of, I'm pretty convinced HPPD is some sort of autoimmune reaction in the brain. I know nobody has the answer but this so me makes the most sense after trying to piece the puzzle together for the last four years. All the more reason to eat healthy and exercise! I don't know that I'll ever totally overcome HPPD and return to completely normal vision. I've always had eye floaters and a bit of snow so my normal is probably always gonna have some HPPD symptoms. But overall I feel I'm getting close to that normal feeling again, whatever that is. I think in another two years or so I'll be pretty much done with HPPD as a chapter of my life. It's strange, I remember years ago when I first got HPPD I thought there'd be some kind of cure. I often fantasized about it and what I'd do if I was able to suddenly return to my old brain, personality and way of life. I thought I'd be the happiest person alive. But as it turns out HPPD fades extremely slow, almost to the point where you don't even notice it improving at all. The years just pass by, you keep checking in only to feel about the same as you did before, until a few years pass, then a few more and finally you realize you've made a ton of progress and you can maybe even see the light at the end of the tunnel. That's sorta how I feel now. I've improved enough to where I'm closer to being me again than I ever have in the last four years. I've had lots of other health struggles since getting HPPD that have also transformed my life, but HPPD is honestly the least of my worries at this point, which feels incredible to say. I'm hoping to do some work in the future with regards to bringing some attention to this disorder -- I just don't know what quite yet. I also need to get fully healthy before I do. In the meantime I'm gonna keep doing what I've been doing the last four years: eating healthy, exercise, work, spend time in nature, learn, love my friends and family and just try to take it one day at a time. That's the only thing you can do with this disease: just put one foot in front of the other.
  13. Congrats! I wish more people posted about when they get better. I think the vast majority of people with HPPD recover, if not fully then at least to a degree they can live with it and sustain a normal life. You're lucky to have been so young and have had such a malleable brain. You've got your whole life ahead of you now! Stay away from drugs and make the most of it!
  14. Appreciate it. Even if you think your brain is pretty much set and unable to fully recover I still think maintaining a healthy lifestyle is the best option for mental health and overall well being. I've noticed the foods I eat actually alter my moods and ways of thinking. Any advantage you can get while dealing with HPPD is one worth having. You don't have to go all out, but if you exercise four times per week, do some yoga, avoid processed foods, get proper sunlight, meditate, find purpose in your life and surround yourself with positive social connections then you can find happiness with this condition. I firmly believe that because I've seen it with myself and I had a horrendous case of HPPD to start.
  15. Money, bureaucracy, etc. Seems like research generally moves really slow unless there's a high demand for something.
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