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K.B.Fante

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Everything posted by K.B.Fante

  1. Hey all, Been a few years since I've been here and that's honestly that's a good thing. HPPD hasn't been a major part of my life for about four years now, at which time I've gone back to school, had several life changing relationships, traveled and in general experienced life in a way I never thought possible. I truly felt like I had left HPPD behind for good and finally moved on with my life... until this past New Years Eve. After I got HPPD in 2015 I was stone-cold sober for about five years. Then in the last few years as my HPPD become what I thought was totally healed I started to drink a bit here and there, smoke a little and even do small amounts of mushrooms. I actually had mostly great experienced with all but on New Years I did way too many mushrooms than I should have and lo and behold I woke up a few days later with pretty severe HPPD symptoms again. Needless to say I was absolutely devastated. I thought I'd have to drop out of school, I was afraid of talking with my friends, not to mention completely ashamed and terrified of what was going to happen next. As everyone with this condition knows, there's no guarantee for recovery and in many ways this is something we all will struggle with for the rest of our lives in some capacity. The good thing about this most recent flare up is that for the last seven and a half years since getting HPPD I've completely changed my life and become an amateur nutritionist, nearly licensed healthcare worker and an absolute expert in my own body and symptomatology. So this time around as soon as I realized I was in a very bad place I knew exactly what I needed to do in order to turn my life around. The reason I am writing this right now is to share what has worked for me to hopefully help those out there who are also struggling with this condition so that they may also heal and recover and go on to live life even if that means HPPD is always a part of it. Here is what has worked for my in my recovery and what I know about HPPD: HPPD is a brain disease. It is very important to keep this in mind. The symptomatology that defines HPPD also occurs in people who have never done a single drug in their entire lives. The common theme however is that most people with HPPD symptoms also have other comorbid mental health conditions like anxiety, depression, bipolar disorder, personality disorders, attachment disruptions, schizophrenia, etc. What this means is that HPPD is a neurological disease state and that similar to other mental illnesses there are lifestyle choices you can make that will help and conversely lifestyle choices that will only worsen the condition. As we all know, this is such an ugly disease that worsening often leads to suicidal ideation and even completion, which is why it is so important to fully grasp that similar to other neuro-cognitive diseases like Alzheimers or dementia the stakes are high and the only way you're going to reverse it is through discipline, hard work, dedication, and knowing how to live a healthy and robust lifestyle that enhances mitochondrial functioning, reduces inflammation and induces positive hormetic stress on the body that boosts BDNF as well as autophagy in order to repair damaged cells and clean up the damage done by drug use and overstimulation of the brain, which is essentially what results in HPPD. I've made many posts on diet and lifestyle and I encourage people to read them since I now have a proven track record of recovering from severe HPPD. If you're eating a pro-inflammatory diet, not exercising and continuing to do drugs then you're making the choice to continue to possess HPPD and not improve. Again, similar to other neurological diseases you are not going to simply be able to take a pill and magically have the most complex organ in the known universe (your brain) suddenly rid itself of underlying systematic damage that's the result of lifestyle choices. The only way you're going to be able to do it is by taking control of your own life. That said, the most important information I can post with regards to this condition and healing straight away is this: stop eating carbs, switch to an animal based diet (carnivore or keto) and start fasting. It is important to keep in mind that these dietary changes are incredibly difficult for most people on the Standard American Diet (or whatever diet is most prominent in your country since most industrialized cultures do not eat healthy these days) and so you need to titrate before suddenly switching over. So please do take your time initially. I would honestly recommend at least a full week to 10 days of steadily cutting down on carbs before going full carnivore or keto. Additionally, I'd highly recommend trying to eliminate anything processed and even cutting back on things like nuts and seeds as well. Healing HPPD is all about re-balancing the glutamate-GABA relationship in the brain and because there's often high levels of inflammation in the brains of those who recently get HPPD you're going to have incredible sensitivity to this ration and anything that stimulates glutamate which is an entire laundry list of everyday food items that are a staple of our diets. If anyone wants to know the source of where this is all coming from, there's been a long history of the keto diet as it relates to epilepsy (which has a major overlap in HPPD and other mental health conditions -- this is why benzos are so beloved in this community) and now Chris Palmer out of Harvard is even proposing that most all brain diseases are actually metabolic disorders. I highly recommend reading his new book if you want to understand any of this in further detail. The bottom line is, after having this condition for well over seven years I've run every last experiment there is on myself to see what works and what doesn't and if I only had this info when I first got HPPD I cannot imagine how much suffering I would have been able to avoid and so I'm hoping that by sharing this with everyone here there are people who could benefit from this in some way. Keep in mind, I am not saying that by doing this you will be "cured" (we have to do away with this word in this community) or that it will suddenly resolve all your HPPD symptoms. In my experience it takes a really really long time to fully dampen down an inflamed brain and often times lowgrade inflammation will hover around for months or even years in the form of mild HPPD symptoms like visual snow. What I am saying however, is that by giving these diets a try you drastically increase your odds of improving not only your symptoms but your whole life altogether as these lifestyle choices have massive effects on overall wellbeing and happiness in general. It is also important to keep in mind that you should be doing your own homework and trusting your own body throughout this process. Again, these diets are rigorous and difficult and they are not -- I repeat, NOT -- meant to be implemented for years on end. These should be utilized as tools to rest the brain and mitochondrial functioning so as to diminish inflammation and symptoms, but once back to baseline it is important to re-incorporate healthy carbs given longterm low-carb diets can actually worsen health and wellbeing overall. Please, please, please do your own research and become the physician of your own body. That is the best advice I feel like I can give at this point. Mainstream medicine and trans-national pharmaceutical conglomerates are not your friends and not going to save you from this condition. I cannot emphasize enough how waiting for them to save us is not the way forward. Do your own homework, know your body and mind, listen to what your body needs, eat healthy, exercise, sauna, fast, sleep well, get outside in nature, go to therapy, have lots of friends, do cold plunges, run, make love, and I promise that will be better medicine than anything you can get from a doctor's office. Again, I cannot guarantee this will work for everyone since we are all different, but it worked for me once, it's working for me again right now, and I know that it will probably work for me again in the future at some point. Hopefully this helps at least another soul out there and if so then that's a win in my book.
  2. A few days ago was my sixth anniversary of getting HPPD. Crazy to think I've been making this post every year for the last six years. As I noted in my Five-Year Anniversary post my life has changed in ways I could have never imagined. The past calendar year has been the craziest of my life and I'm sure many feel that same way due to Covid. I did want to post a quick update as I've had a bit of a setback with my symptoms... Long story short I had to take two courses of antibiotics in February and then had a major allergic reaction to a cosmetic product I used for a few weeks which left me in the worst state I've been in for quite some time, probably three years or so. I suffered exposure to mold in 2019 and had a major reoccurrence of symptoms for about four to six months but eventually got over that. This recent episode was worse however and illustrates the fragility of the brain post-HPPD. I guess this is my major takeaway after six years of dealing with this condition and essentially achieving close to a full recovery: Once you've gotten HPPD your brain is compromised from there on out. Yes full recoveries are totally possible and I truly believe as long as you live a healthy lifestyle immediately following HPPD and don't do drugs that most people can get there with a lot of hard work; however it's just really important to keep in mind that once your brain suffers a serious injury it's going to create antibodies and an entire defense system that will react similarly down the road to anything it perceives as a threat. I've mentioned before that I think there's some aspect of autoimmunity to HPPD and I think this is why. Once the body encounters a threat to the system it mounts an entire strategy of defense for future threat of a similar variety. This is why you can't do drugs after you get HPPD, nor can you ingest toxins or suffer other diseases without having a major setback. The good news is because I've come so far with my recovery I'm always able to bounce back from my setbacks. I truly believe there's a large aspect of inflammation to HPPD and that as long as you live an anti-inflammatory lifestyle (eating clean, exercising, low stress, lots of sunshine, etc.) your brain will eventually cool off and rid itself of toxic overload and corresponding autoimmunity. In my experience there's always been a direct correlation between inflammation in my brain and body and exacerbation of HPPD symptoms, which is why I've suspected the original onset of HPPD is some kind of autoimmune reaction to drugs due to poor brain health and pre-existing inflammation of some kind. Anyhow, I hope this post is still uplifting. I consider myself a success story with regards to this condition and have worked tirelessly for six years now getting my mind and body back to full health. I have succeeded, however I've also had major health challenges aside from HPPD that have set me back from time to time. Similar to everything in life my HPPD seems to follow a larger pattern of contraction and expansion, growth and decay, health and disease, etc. This is just the nature of dealing with a chronic health condition, especially one that originates in the brain. I will recover from this current episode because I'm already well on my way to feeling normal again and I've done this so many times before, however I do hope whoever reads this understands that you absolutely cannot take your brain and health for granted once you get HPPD. You absolutely have to tread lightly and be careful with how you live your life. You cannot put your body and health in danger by doing stupid stuff and not taking care of yourself and eating terribly and not exercising and so on. To recover from HPPD and to stay recovered takes constant maintenance and discipline. This isn't to say you can't have fun and enjoy life of course, just that you need to be careful far more than you ever were prior to HPPD. To be honest I feel the reason I've had this current setback is because I thought I was completely healed and could live a bit of a reckless lifestyle like I did when I was younger which is what got me HPPD in the first place. So in a way I'm very thankful I've had this recurrence as a reminder of how I need to life moving forward. Hope to check back in for Year 7 and until then I hope everyone is staying healthy and doing everything they can to regenerate and recover. -- K.B.
  3. https://aeon.co/videos/the-dark-side-of-ego-loss-what-its-like-to-disappear-into-depersonalisation?utm_source=Aeon+Newsletter&utm_campaign=c6f0fb40b6-EMAIL_CAMPAIGN_2021_02_05_02_20&utm_medium=email&utm_term=0_411a82e59d-c6f0fb40b6-70865555 This may be disturbing for some but it has a profound ending that I identified with. One of the biggest lessons I learned in dealing with HPPD is to adopt the "Never give up" mentality. I was close a few times and thought about suicide daily for years but as the video points out I found my rock (diet and healthy lifestyle) then was able to orient myself from there as I could finally see progress. After that I just kept finding more and more rocks to orient myself to through healthy, natural lifestyle adjustments and I managed to climb back to functioning health again. If you're currently in a lost state of mind and think there's no way back I would just encourage you to keep fighting, keep going, keep putting one foot in front of the other and eventually you'll make enough progress to feel fulfilled and reconnected again.
  4. (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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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
  13. 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/
  14. 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.
  15. 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!
  16. 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.
  17. Money, bureaucracy, etc. Seems like research generally moves really slow unless there's a high demand for something.
  18. Wow, that's the most promising research I've heard on this board in the 3.5 years I've been here. Anything that can target the brain that widespread and mitigate an entire range of cerebral disease would have to have a positive effect on HPPD.
  19. One thing that caught my eye was one of the doctors talking about the immune response in the brain, specifically the glial cells. He said there's four immune systems in the body: the gut, lymphatic, blood and brain. Each has it's own defenders that target invaders in order to protect the body and it just so happens the brain has what he calls "bazookas," aka, glial cells. Due to the importance of the brain to the rest of the body the glial cells essentially blow anything that enters into smithereens but in the process cause collateral damage. I'm kinda wondering if some of us had a weakened blood brain barrier and the glial cells identified the drugs we took as invaders and basically went haywire and destroyed not only the chemical messengers of the drug but also some of our brain in the process.
  20. As of the time I'm typing there's still 13 hours left of free viewing for this series. Here's the link: https://brokenbrain.com/pages/replay-weekend
  21. Here's the link where you can purchase this documentary series on brain health: https://brokenbrain.com/pages/own#packages I only had a chance to see about half of it before it went offline and they started to charge for it but the parts I did see were impressive. This is as comprehensive of a breakdown on brain health as you'll find anywhere. There's just so much great information in here. If everyone on this site bought this when they first got HPPD I have a feeling we'd be seeing a lot less posts about suicide and a lot more success stories. One of the doctors in this series specifically caught my eye. His name is Titus Chiu. He's a neurologist out of Berkley, CA. He's got all sorts of crazy advanced technology he uses to analyze brain injuries and supposedly can identify where exactly your weakness is inside your brain using these tools to analyze eye movement and pupil reflexes. I guess he does consulting via the Web too so you don't have to be in northern California to see him. Here's a link to his website which has all sorts of good information: http://drtituschiu.com/
  22. Been in your same shoes far too often since getting HPPD nearly four years ago. Here's what I do know: If and when your symptoms worsen it's due to something in your environment. It's the same principle as any other injury that gets exacerbated by an outside force. Unfortunately with HPPD we often can't see or know what that is. The best thing you can do when suicidal is to talk to someone immediately and establish connections with close friends and family. You don't have to tell them what's going on inside your head but just the mere fact of being close to other people is a lifesaver. Suicidal ideation thrives in isolation and those who attempt suicide are almost always withdrawn to some degree. You also need to immediately address your anxiety. In my experience anxiety is triggered by toxins and autoimmunity. I know this isn't always the case for everyone but considering one third of Millennials have anxiety I'm pretty sure there's a common denominator. I also know that when I've completely cleaned up my diet my anxiety has disappeared. Cut out the gluten, dairy, sugar, fast food, virtually anything that comes prepackaged. Cook at home using mostly vegetables (lots of greens!) and healthy proteins. If you need some sort of immediate relief I'd go with herbs like passionflower, chamomile, peppermint, bacopa, valerian, etc. CBD is also one with some great anti-anxiety benefits. Additionally, meditation, exercise (especially long distance running to work up a sweat), getting outside, engaging with art, etc., should all be part of your daily routine. The biggest thing to keep in mind is that you're not gonna find a single pill that's gonna suddenly correct an entire lifetime of trauma and mental illness. I used to think that way just like most people in the Western world. Unfortunately I had to figure out the hard way that health doesn't work like that. It takes hundreds and hundreds of small little things every single day to truly save yourself and regain your health. You have to put in the work. But if you truly want to live and want to turn your life around you can do it -- anyone can. If you need any help feel free to DM me. For now, just get started with some of this stuff, get your foot in the door and make tiny progress tomorrow, then the next day, and just keep putting one foot in front of the other until you eventually get your head above water. You can do it man. If I can, anyone can.
  23. Is there a certain amount of money that must be obtained before the study gets the green light? If so you might wanna set up a GoFundMe page.
  24. Vitamins have only had a positive effect on me and I imagine the same could be said for many here. Any excess and you urinate them out of your body. As for other meds, you're best to just try them and see how you feel. One pill likely won't make a difference.
  25. Xanax is a drug. If you've been taking Xanax for years then you haven't really been drug free. I'd remove anything and everything from your routine that even remotely has drug-like effects, including coffee, cigarettes and even excess sugar. In my experience you have to totally reset to figure out what's causing your symptoms to worsen. A few summers ago my symptoms were steadily worsening over the course of two weeks and I finally figured out it was due to nutmeg in a spice jar I was using everyday to flavor my food. I recently had a similar occurrence with mold. You should take stock of what times of day your symptoms worsen and ask what you were eating or doing prior that could have exacerbated your condition. I've had to do this constantly over the last four years and as tiresome as it is it's been really helpful in just making it through the day.
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