Jump to content
Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

Leaderboard


Popular Content

Showing content with the highest reputation since 04/25/2018 in all areas

  1. 3 points
    Some if not most of you may know I started a non profit for HPPD and VS with the help of several people with HPPD. After many years of hard work we have a neuropsychiatrist, Dr. Harry McConnell, on board who has taken up the mantle from Dr. Abraham and has designed the only fully comprehensive research study on HPPD. It will cover genetics, autoimmunity and utilize several means of neuroimaging. I’m encouraging all of you to get your family, friends even yourselves to donate toward this study because if something remarkable is found, it will change everything for us as a patient community. http://www.neurogroup.org/donate/
  2. 3 points
    If you think this sounds like a dream come true, you are wildly misinformed. It is not like tripping all the time.. You have no feelings of joy, or insight. Just all the very ugly aspects. Anyone saying otherwise has some very mild form is this. Imagine your strongest trip ever, now remember that feeling when you've come down but you are still fucked up (and remove any feelings of relief that you made it through to the other side)... You're disphoric, depressed, anxious, nervous, paranoid, your mind is starting to make normal thoughts, but something is still very off, your vision is all messed up, but without the joy and insight, it's just an ugly mess. Don't underestimate this illness. I'd literally rather have cancer, or have my arms cut off.
  3. 3 points
    This is quite funny really: "Can i still smoke weed?" "well, staying totally sober is the best bet" "What about spice?" "well, staying totally sober is the best bet, no more drugs of any kind" "Just some coke then?"
  4. 3 points
    Keep on fighting mate, I know how hard it is, but you never know what is around the corner. What is your current situation, are you on any meds? PM me if you need anything, even just to rant.
  5. 2 points
    Just as Jay mentioned, no one can answer those questions. We don't understand the underlying mechanism of HPPD or psychedelics for that matter. If you do your research you'll come across some explanation of LSD or Psilocybin 'mimicking' the role of serotonin in your brain but that's still speculation and probably not the whole picture. Maybe we will fully understand them someday but probably not before we have a better grasp on the brain. The brain is certainly still a mystery. The moral here being when dealing with these substances you never know what you're going to get. And this varies wildly from person to person. It all comes down to what you want out of life; what are your goals, what makes you happy. I can almost guarantee you that drugs will not bring happiness, they do not bring stability and they typically do not promote personal or spiritual growth. I used to be convinced that LSD and Psilocybin were the answer to 'finding myself', uncovering my spirituality and transitioning to a higher level of thinking. This lead me to binging on them (15 hits of acid in one night ) and HPPD and substantial regression which almost cost me my marriage and opportunities that were in front of me. Not to mention my personality. I think the most debilitating aspect of HPPD is the loss of self, the visuals are just distracting and of course bring guilt because they are a constant reminder that we fucked up. But knowing you used to be someone else and not knowing how to go get that back is very strange and depressing. I'm not trying to preach to you. We all have to make our own decisions but there are some things that cannot be undone or will take years to undo. The mystery of the mind is also in how resilient it can be if you give it the proper conditions to recover. So there is always hope! But if you have HPPD now and continue to explore the trippy life it will likely get worse. This is just from experience and the reports of others. The longer you let it get worse the longer it takes to recover and the more difficult it will be. Also on the subject of people dosing more than you: do you really know that they are okay? People are great at putting on a front (including myself) to escape the possibility that things really are not going well. I did just that. Not to say that there aren't people who can responsibly use these substances without problem but what's important is if you can. You know in your heart whether it's time to stop or not. The fact that you're here and seeking help is a great indication that you're mature and care about your life. Think long and hard about whether drugs are worth your happiness. Again not trying to preach but this is something I had to deal with and it's not an easy question. It can become an identity issue, especially when most of your friends are still exploring. You have friends here, please continue to reach out. Life is beautiful, sometimes we just have to step back and realize that. Take care and please keep coming back!
  6. 2 points
    No one can answer those questions.. You might be ok, you might completely ruin your life. It sounds like you got incredibly lucky to come through the other end and have a form of hppd that can be managed. I'd quit while you are ahead. I was in your situation and carried on pushing my luck and got totally fucked over and have had life altering, severe hppd for 24 years now. You say that quitting drugs would suck.... What sucks FAR more is not being able to have 1 moment of the rest of your life with any kind of peace or true happiness. What sucks is not being able to maintain eye contact with your wife as her face swirls and distorts... Or not being able to chat to your parents without crippling anxiety. Or going to a job interview feeling like you are on acid. You'll only realise how amazing peaceful sobriety is when it is no long an option.
  7. 2 points
    As we all know psychedelics work through the 5HT-2A receptor, and one of the features of this is that they disrupt signal coupling in the thalamocortical feedback pathways which basically means it desyncs multisensory data input and stops the ability to discriminate and gate incoming signal flow to the cortex. This destabilization leads to "subtle flickering or pulsing of light intensity; geometric grids and matrices; the perception of halos or auras around light sources; increased luminosity of reflective objects; the softening of line and texture resolution; and the inability to hold sharp focal contrast between foreground and background in depth perception." So it's possible that psychedelics lead to persisting destabilization of this feedback loop giving us some of the symptoms listed here additionally this feedback pathway fills in our peripheral vision and even if it's "the rate of multisensory frame saturation or neutralization was slowed or interrupted by even a few milliseconds, incoming sensation would begin to layer over itself with increasing levels of smoothing, liquidity, and phantom frame echo decaying in the wake of sensation." This may explain why people with HPPD see things move in their peripheral, additionally the fact that psychedelics "stop the ability to discriminate and gate incoming signal flow" might explain visual snow since it's basically the inability to filter out what we'd normally see in our imperfect vision. I have no degree in neuroscience or in pharmacology I am merely making assumptions based on the article I'm reading, If there are any faults in my theories please let me know I would like to improve my knowledge and understanding of pharmacology. Article I'm referencing http://psychedelic-information-theory.com/5HT2A-Agonism-and-Multisensory-Binding
  8. 2 points
    One more important fact is MORE PSYCHEDELICS WILL MAKE IT WORSE! This makes sense and most people here will tell you this. I'm not trying to tell you what to do but you have to be careful. I love tripping but I have lost my right to because I overdid it and that's okay. Trust me on this one; you want to stay away from mushrooms, DMT and LSD. I made the mistake of recovering pretty much completely then years later I started taking mushrooms again and it brought back my old symptoms. Anyway good luck and take care!
  9. 2 points
    As you read through this site you will likely hear similar suggestions from people who have been dealing with this disorder. First off, from what I have experienced and read visuals are not a reflection of 'brain damage' they are likely some optical disorder that we have yet to pinpoint; a sensitivity to light or whatever you want to call it. However the cognitive impairment that I have experienced I am almost certain that it is due to anxiety. Anxiety brought on by the visuals and the regret and guilt they bring. Anxiety is a powerful driver that can be debilitating. So my advice to you is to cut back on the weed (trust me it's only going to exacerbate the symptoms) and make yourself busy. Find a hobby that you can throw yourself into, could be school, instrument, anything healthy. Get plenty of sleep, eat well and exercise regularly. All of these things will reduce anxiety. If the visuals don't go away immediately it's okay, you have to give it time. The important thing is to not dwell on it because there's nothing you can do but try and get better, you can't undo the past. Plus you can take solace in the fact that you're very young and from what I can tell mature since you've identified the problem early. I myself took significant doses of LSD around your age for extended periods and didn't realize I had HPPD for a few years. But once identified I followed the above recipe and eventually they diminished greatly. Please reach out if you have any questions, concerns or just want to chat. Take care and be well.
  10. 2 points
    When I was dosing, I used to dose frequently. Sometimes for weeks at a time. I also never really had a bad trip. You say that dosing so often over a short period of time was irresponsible. Learn from what you've experienced and don't beat yourself up. The important thing is you've learned that, for you, perhaps lsd isn't doing you any favors. As for your experience with cannabis, it's very common. I used to smoke all day every day. Quite suddenly it made me feel dosed, after that I started getting panic attacks. I had to quit all together. I took a pharmaceutical free approach to dealing with this disorder. Then again, I discovered I had a problem back in the 70s and you just couldn't talk to a doctor about using psychedelics. The one time I did the doctor basically told me I got what I deserved. As others have mentioned, take some time off from using cannabis. Let your mind level out and assess how you're doing. Hang in there and take care of yourself.
  11. 2 points
    I too used to take ridiculous doses but my drug was acid. Why did I do it? I just wanted to see what would happen I guess. Go deeper. We were also under the false impression that it was harmless. The handful of times I've smoked weed since I stopped dosing produced panic attacks and a scary psychedelic effect. My brain felt like it was being run by some alien software. Horrid! I think it's great that you reached out on this forum. You're not alone, there's a whole tribe of us who are dealing with this. Understand, there are people in this forum who life happy and productive lives. I've had this disorder my entire adult life but existence has been sweet. Welcome!
  12. 2 points
    I want to preface that my symptoms are/were severe. Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction. I basically developed a brutal form of HPPD. After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers. By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms. I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor. Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/ I'm not really sure how many others here would test positive for the same receptor. It has been studied, and while very rare, does not accurately describe and represent HPPD-type symptoms of visual distortion (although I believe mood related problems are connected). But, what I realized for the first time is that it's not just a problem of receptors not functioning properly, but also my immune system is actively involved in the process of disrupting my neural communication. Antibodies connect to the receptor and therefore block my ACHr from working properly. So, any discussion of my receptor malfunctioning is somewhat moot. The receptor is targeted by immune system to block its function. Fuck you immune system. Don't know what this means yet, but while I'm still working to make connections to all sides, it does explain why Prednisone (immunosuppresive therapy) has been effective for me in the past. EDIT: Don't know why I forgot, but the auto-antibody for acetylcholine actually DOES have implications on the visual system. As shown in the paper, people with this antibody has impaired reflexive pupils causing photophobia. Bingo.
  13. 2 points
    Hey man! Greetings! First off, i know this is a scary and traumatic experience and I am very sorry you are having to live with this disease. It is debilitating but i think we can all agree there are a few cool things about it. Maybe. Sometimes. Lol. So, I developed my HPPD after three months of tripping nearly three times a week and then going off to Amsterdam and doing the “strongest shrooms on the planet”— this is what the shop adversities in March of 2018. It has now been almost a year and i am WORLDS bettter. Which is lucky, yes, but not necessarily uncommon so hold onto to HOPE and make sure to TRUST the universe. The only thing that will heal you and help you is quitting drugs completely. I know, this sounds terrible, i get it, I am addicted to many different substances, sadly. Anyway, i do not want to speak so much on myself and rather, more about what you can do to help yourself: -Eat healthy. Fresh fruit, chicken, salmon, smoothies, kale chips and lots of water were my main focuses when it came to food. And still are. I could barely eat the first two months and would have to force food down my throat. But make sure to eat. -Workout. It does not have to be something super strenuous or anything. Go for a stroll in the park or walk your dog or go swimming. -STOP SMOKING WEED. And doing other drugs. I continued to smoke weed for about a week and a half after my trip thinking it was helping me but it was only intensifying my visual snow, floaters, halos and paranoia. -talk to someone IRL (in real life). These forums are helpful but can also be quite disheartening — so go talk to someone. Whether it be a counselor, a friend, honestly anyone. You’d be shocked at how many people are accepting of this disease. It is real and it is valid and there is a lot of info online. Good luck. You’ve got this
  14. 2 points
    I thought i'd start a topic where we can all contribute ways we have made our lives a little better (non medicinal). Get healthy and sober This is the obvious one... quitting drugs, stimulants like coffee, smoking etc.... Then eating healthily and working out really do help alot. Forget the past It is easy to get caught up in a spiral of guilt, anger and jealousy about your current situation. Why did I do drugs? Why did I get hppd? Why are my friends ok? Like all the mistakes and regrets in life... learn from it and move on (not easy, I know). These emotions will just feed the anxiety and hppd. Change your life hppd is at it's worst when we are stressed. It is impossible to avoid all stress, but do what you can to change your lifestyle for the better. If you hate your job, try and change it.... If you hate the city, move out. If your friends don't seem to support you, move on (the real friends will let you back in, when you're ready). These are big, life changing decisions... but hppd doesn't have to stop you making them. Grab your life back hppd can strip you of your ability to do the simplest tasks in life. Retrain yourself to do these tasks. If making eye contact is tripping you out, just slowly do it a little more each day... The more you do it, the more normal it will become. Same goes for all sorts of things... making small talk, going out and about, chatting to someone you are hot for. Your life isn't over This is a key thing to remember. The 1st months and years can be very, very tough... But life goes on. There are numerous people on here that have gone on to have successful educations, careers, relationships and families. hppd is not the end of your life, your dreams or your happiness.
  15. 2 points
    Just try to relax and see how you heal over the next few months... Don't do any more drugs, try to eat well and exercise and just do things that take you mind off hppd (films, tv, books, sports... whatever works)
  16. 2 points
    I bet if you bought up the fact that you are considering suicide, you would quickly discover that you are far from a burden. I've seen too many people kill themselves thinking they are worthless, when in fact everyone around them loves and cares for them
  17. 2 points
    Hey, If anyone is interested, please get in touch. Many thanks, Alex
  18. 2 points
    Hey guys, Just wanted to report on what my experience with dosing with both Abilify and Levetiracetam (Keppra) has been like for me. I know most people have had bad experiences with Abilify. What I began noticing back when I was in the hospital, was that after they started me on keppra, the antipsychotics I would take (primarily Seroquel or Olanzapine at the time) would no longer cause adverse reactions to my hppd. They began having what I felt like was their intended effect - sedation. This was strange to me because for example, every time I took Seroquel prior to being on keppra, it would cause an exacerbation in my visual symptoms. With all of that being said; im one of the unlucky ones with HPPD, who upon getting HPPD developed a psychotic concurrent disorder somewhat on par with schizzoaffective disorder. Because I had HPPD I wasnt able to effectively use any antipsychotics to quell these symptoms. So then I remembered that after being on keppra, I was able to dabble with antipsychotics. So I figured I'd talk to my doctor about trying out Abilify. (Aripiprazole) The first 3 days, it made me feel really good and calm, then for the next two weeks it kind of made my HPPD a little but worse. I figured I'd try it out for at least a month before making a final decision. Anyways, that whole hypothesis about keppra enabling the use of antipsychotics proved true for me with Abilify as well. It's been about a month, and basically what happened was that the visual symptoms of HPPD basically got worse for a little while, but then returned to baseline after about two weeks. This is great for me, because IMO Abilify is one of the best antipsychotics out there. What's great is after my hppd returned to baseline, I've been able to keep the antipsychotic properties that Abilify has to offer - which so far is working really well for my psychotic/schizzoaffective symptoms. Just thought I'd post this little blurb, as maybe this could prove useful to those out there who suffer from *just a little bit more than hppd* TL;DR - keppra has allowed me to use Abilify effectively without causing my hppd to become worse, and has been helping my schizzoaffective symptoms while the keppra helps my hppd along side it. ?
  19. 2 points
    People link floaters with hppd because, at onset, they are constantly monitoring their visual field and start to notice the natural things too. I had floaters since about the age of five. If they are problematic, you can get surgery that blasts them (they come back after a few years) Glad the flashing has stopped for you
  20. 2 points
    My symptoms were very very mild before the full blown hppd. Slight trails, halos. However, whenever I would smoke weed I would basically start to full on trip -- I had visuals similar to a low dose of mushrooms. I even had mild auditory distortions. Yes, I was smoking weed before the 'full blown hppd'. I only have moderate hppd I believe -- and for that i'm grateful. I didn't know I had hppd before I had my acid flashback smoking weed. I read your introduction post & in my opinion if you do have hppd, it's very mild. Stay away from all drugs, even nicotine if possible, and I'm guessing it'll go away. Not an expert by any means but it does seem extremely mild & that's my best advice. STAY CLEAN. Don't make the mistake many ppl did on this forum and push your limits ( including me ). You have the warning signs, now listen to them! Best of luck to you ((:
  21. 2 points
    Meth will make your life worse
  22. 2 points
    It's a bit like trying to cure a gunshot wound by firing another round into it. I've tripped post hppd and it made my visuals worse.
  23. 2 points
    Delucid is a complete moron. I wouldn’t listen to him and it seems like he is trolling. Thanks for opening up. I thin you should let your family know if they will be understanding, that way you will have help if you need someone there for you. The only reason really to see a doctor is if you feel like you need benzos which is typical if you experience terrible anxiety as a symptom. Other than that there is nothing they can do for you. Lemon balm in my experience was a decent supplement to help with the anxiety.
  24. 2 points
    Interesting post, I remember a similar post a while ago, but never as well researched. It certainly works for me in the very short term, but i'd never thought of trying long periods over months. Something I will now be trying. Onemorestep raises a good point about trying this in VR. Having complete immersion could be really helpful. I will research if this is available, if not... I will try to make a 360 video to try.
  25. 2 points
    Hello, I hope you are well. I contracted HPPD about 8 years ago from acid had a period of abstinence in which it almost entirely went away with the exception of the occasional 'flare up' usually when I was feeling anxious. I then had a period of 7 strong mushroom trips in about 7 weeks that seem to have brought it back to some extent so i am stopping psychedelics for now. I too am very interested in their mechanisms, applications and pretty much everything about them. However they CAN induce a detachment from reality which scares the shit out of me. Life is amazing and for a time psychedelics made me feel this in a deeper fashion however there were breaking points where I felt like I wasn't myself, detached from everything and everybody. This is not where I want to be. Be careful. My advice would be to take a long beak and see if things get better. Exercise, sleep and meditation are excellent tools to use to get out of the funk. It sounds like you just have visual distortions and not DP/DR; I think that's a much more manageable situation than what a lot of other people are facing. Quit while you're ahead before you lose your sense of self and place in this world. Also I think that it can lay 'dormant' within your brain, in which it is susceptible to reactivation. The moral being if you think you're 'healed' and go back to tripping the previous effects can come roaring back. I have gained a lot from psychedelics however I paid some prices, I think that for a while I was deceived into thinking that they were the answer. I really don't think they are the answer to anything. They do allow you to see beyond yourself and feel/know there's something greater than you out there, that we are all one and love is paramount to everything. However, these conclusions and facts exist independent of drugs and can be realized through meditation and mindfulness. There's a great quote from Allan Watts about the use of psychedelics "...when you get the message you should hang up the phone" Anyway I wish you the best of luck, take care.
  26. 2 points
    I started dosing young, just prior to my 14th birthday. I went through some rough and stressful years after I stopped when I was 20. You said "May we all find happiness again". After heavy dosing for six years, I didn't think I could be happy again. The chemicals that kept me fueled through my teens were no longer working and I realized that I had done some damage to my mind. It took some years of hard work, but I found happiness again. There's nothing special about me. I'm just an average human, but now I'm happy. It took focused effort, setting goals and not giving up. I think the hardest part was realizing that because I'm human, I'm flawed, but now I'm OK with that. I guess what I'm trying to say is that happiness is attainable even when you're in a dark place. One step at a time, stumble, get back up and try again. Take care.
  27. 2 points
    I'm sure we'd all pay $1000s of dollars for a legit cure (I offered the guy $50k for the rights, so I can make it free, if he proved it works... no response). Maybe it's just me though, but as a sufferer of hppd, I just wouldn't even give it a thought to try and cash in. I'd do everything in my power to make it free and available to everyone who suffers this shitty disorder. Anyway, as dayum says, all he has to do is send a copy to any of the mods to test, can be a watermarked screenshot. If it worked, i'd find a way to let the guy get rich and let everyone have it for free.
  28. 2 points
    I've flown 100s of times with hppd... Doesn't effect my symptoms at all. Have a good time, Sweden is a great, hope you meet Zlatan! He's a legend
  29. 2 points
    For work I travel to the Czech Republic roughly every three months. The first trip anywhere, for anyone, can be anxious. Most of the people you encounter in Europe speak english. If that's your primary language it shouldn't be a problem. Just relax and take it as it comes. Keep reminding yourself everything will be ok. The world has gotten smaller and foreign lands are familiar. In Prague Starbucks is a common sight. Traveling on a plane can be an anxious experience. I load music that I love on my phone and try to forget where I am. Yes, planes are weird, but they're very safe. Airports a just a pain in the ass, but if you stay calm, they're easy to navigate. Enjoy your travels. Having this disorder doesn't mean you can't have a wonderful journey.
  30. 2 points
    I've sent your post directly to my doc, so very likely he will reply within a week. I can't explain why it would help with HPPD, the only thing i know is that every HPPD case can be very different and different people react very differently to meds and supplements. So i only take meds with care and we (my docs an I) are thinking every step i take through. Thanks a lot for sharing and greetings from the Netherlands!
  31. 2 points
    This is a bad place to get a yes or no answer for this kind of thing. I will try to be as unbiased as possible in my response to allow you to make your own decision. cons: - some people here are because of DMT so this (hppd) is possible through its use - DMT is arguably the strongest hallucinogen you can find - even if you don’t get hppd, DMT can be a very strong experience, one that I’ve gone through myself, and isn’t always pleasant or beautiful. - you might become “Enlightend”. Whatever that means. Don’t forget, it’s hard to change oneself once you’ve had one of these experiences. You might find you aren’t happy with your life anymore and that’s fine if you have the motivation to change it. You might not. You might become miserable. Pros - While DMT is the strongest hallucinogen, it’s also the shortest acting. Time is an enormous factor when it comes to accruing brain issues due to hallucinogen. I believe that doing DMT is probably better than dropping acid if only because while the effect is enormous, it’s duration is over 60 times shorter than traditional lSD. They don’t call it the businessman’s trip for nothing - you might become “Enlightend”. Whatever that means. Don’t forget, it’s hard to change oneself once you’ve had one of these experiences. You might find you aren’t happy with your life anymore and change it! Personally, I’ve done DMT a handful of times and that was after I got hppd (roughly 18 months after). The only thing I noticed, was if I did it a few days in a row, I would get anxiety. I was kind of shocked to experience that considering how bad I had hppd when it first started. But it could have easily gone the other way. I could have had the neurochemical reaction that causes hppd happen (whatever that is). Or just an awful trip. Hell I broke through into a hospital for a few minutes before I was orbiting stars. That was scary. My friend who supplied it said he’d given it to many people and they were all fine... but once he gave it to a kid who immediately started screaming and ran outside into the yard and started eating dirt for ten minutes while wailing. When he came out of that he had no recollection of what he did. Thank God he didn’t become violent because he could have murdered someone. at the end of the day, this is a very extreme drug. It’s not something to be taken lightly. If you do decide to do it, a calm mindset is important and so is setting. Dont expect that its a one one way trip to enlightenment too. I received 0 spiritual benefits from DMT. It’s just too strong to have rational thoughts when it’s working (at high doses at least). I’ve tried low doses too and while it’s very visually interesting there wasn’t this profound emotional realizing at all. Just a “oh cool, colors and shapes. Now they’re gone. Going to go to class.” I would say don’t do it. You aren’t young, but you aren’t on deaths door. You don’t want to become an active member here. Just do do what I plan to do. When I’m an old man and ready to die, I’m going to the top of a mountain with IV DMT and a tank of nitrous. I’ll have a friend slowly crank up both until I pass while listening to Kreeks Notebook ?
  32. 2 points
    You don't sound "dumb" at all. You have a real concern and you're seeking information. I wish I had done that when I first had symptoms. Unfortunately, at that time, there was no Internet. MJ is really powerful these days. I have a few friends who have never dosed who claim weed produces visual and auditory hallucinations. You may be experiencing the same thing. You dosed recently and the brain can hang onto those "memories" for a while. Consuming weed might be triggering what was "learned" during those experiences. My advice would be to stay away from hallucinogenic substances including weed at least for a while. It can't hurt, right? I'm no expert on hppd and I'm not a medical professional. That being said, if you do have early hppd symptoms, you don't want to ignore them. In my opinion (an uneducated one) it doesn't sound like you have hppd but don't take chances by continuing to use hallucinogens. Hppd can be debilitating condition so give yourself a break to see where you stand. Regarding your prescription, I'm not suggesting you discontinue medication prescribed by a doctor. I hope that helps. Take care of yourself.
  33. 2 points
    Hi Guys, i just woke up and started thinking about this forum. Since my relapse/worsening in november 2017 i didn’t visit this forum a lot anymore because it isn’t very good for my mental health. I’m trying to focus as less as possible on the HPPD. But this morning i thought that i at least could give an update about how i’m doing now, since some members have helped me a lot. Well, compared to november 2017 (see posts above) i’m doing a lot better. On the other side i still have a long way to go because my symptoms are still quite severe (but have lessened a bit) and are hard to deal with from day to day. My HPPD is a disability right now because i can’t do the same stuff as “healthy” people are doing. Lets start with my symptoms right now: - pretty bad visual snow, in daytime not very noticable but in dark situations it’s pretty heavy. It’s like there is a layer of VS before my normal vision. I can handle it but it’s sometimes hard to deal with. - trails when looking at fast movements (like waving hands, a phone screen waving before my eyes gives a light trail, etc.). Also pretty long afterimages when i look directly into a light source (like more than a minute or so). Sometimes in notice a bit of floaters but it isn’t that bad. These symptoms have improved a bit and i’ve gotten used to it so it isn’t a very big deal anymore. - sometimes my entire vision looks “too bright”. Don’t know if that’s DR but when that happens i feel a bit disconnected. This symptom is very hard to deal with. Luckily this doesn’t happen very often because i would go crazy if this was permanent. - head pressures and brain zaps. Are often not noticeable anymore but when i have a busy day or week these come back. - some brain fog / cognitive issues / fatigue. Especially my memory is not very good. It has improved so i’m hoping it will slowly get better. - quite severe anxiety, but on the other side i’m able to deal with the anxiety a lot better due to my coaching and the meds i’m on right now. I think that’s about it. Due to all these symptomps, it’s a disability and i can’t do a fulltime job now because my symptoms get worse when i have a too busy day or week. When that happens they get better in de next couple of days but it’s really looking for a good balance in work / socialising / rest. I think i also have found the best treatment possible in the Netherlands. - i visit a psychologist once every 2 weeks to help me deal with the HPPD and slowly building up my life again. I now can work 2 mornings a week and deliver good quality work. This feels good and i’m hoping i will be able to work more in the future. - in the same clinic as the psychologist, there is a psychiatrist who prescribes me meds to help deal with the HPPD and anxiety. This psychiatrist is advised by HPPD specialist dr. Alderliefste. Meds i’m on right now: 2x Clonidine a day, 3x Clonazepam (Klonopin) a day. I’m tapering the Klonopin very slowly (over a lot of months), because it’s helping me pretty good but i can’t stay on this med for the rest of my life. - sometimes i have direct contact with HPPD specialist dr. Alderliefste. He’s helping me very good (the best way possible), mostly he advises me what to do. - now the most interesting part: like the most of you guys, i had an MRI scan from my brain to check if there is no other cause for the symptoms. As expected, the result from the MRI scan was good and there were no abnormality’s. With this result i am sent to a hospital connected to a university, where neurologists are researching and studying visual snow / HPPD. Dr. Alderliefste also helps and supports this research. When everything goes to plan, i will see a neurologist there (with knowledge of VS / HPPD). He will medicly examinate me and hopefully can give advise on optimising my treatment. Also there is a possibility for me to help the research / study as a patient. So i’m very curious about how this will work out, and if the doctors understand whats happening in my / our brains. I definitely will keep you guys updated if there is any interresting information to share. Well, that was quite a story to write. Overall i’m doing / dealing a lot better, but there is a long way to go. Hope you guys are also doing OK! Looking forward to the responses.
  34. 2 points
    Good to hear. We're all probably going to get sick or deal with an illness at some point in our lives (the whole Buddhist aging, sickness, and dying thing)...better to have faced that stuff now to know our strength. I believe you will continue to heal until you no longer think about this disorder and it becomes a footnote in your life.
  35. 2 points
    I got HPPD three years ago now. I've made many posts here during that span and have tried to make a post every year around my anniversary. I'm a little late on this one but I actually take that as a good sign. It means I'm not as obsessed with my condition and therefore am getting better. I guess I've already said everything I need to in other posts. I can't really summarize everything that's happened to me over the last three years without writing a book. There's just so much that's happened ever since getting HPPD. I've had all kinds of additional health problems since and am currently in the process of dealing with another health issue that's really taken a great toll on my life. It's just crazy looking back now after three years. I'm not even the same person. I've learned so much about myself, my family, my health history, the world, life, everything. It's crazy to say but this whole experience has absolutely made me a more complete person. I really think my brain had faulty wiring from an early age and that, as painful as this experience has been (I wouldn't wish it on anybody in the history of the world), it was necessary for me to finally face my past and overcome demons that had haunted me silently since the day I was born. I still have many visual problems but they're very manageable now and don't really interfere with my daily routine, which is absolutely remarkable to say -- just absolutely astonishing considering how bad my HPPD and DP were even a few years ago. I truly had a terrible case of HPPD. My brain just totally crapped out. The amount of pain I've had to deal with every day for the last three years is nothing short of inhumane and mind blowing, to be quite honest. So the fact I'm able to cope with HPPD after all this is truly astonishing. It just goes to show that this condition is something you can heal from, although it takes more work than you could have ever imagined. If you want to get better you have to eat real food, exercise every day, do as many healthy habits as you can fit into your day, and most importantly you have to never give in or never give up. If I had a dollar for every time I thought of killing myself over the last three years I'd be a very wealthy man. But I never did. And look where I'm at now. I'm so happy to be alive and I feel like I'm seeing the world through a totally different set of eyes and a brain that very few people on this planet would understand. Life is so beautiful, and it's only that way because of what I've been through. Anyway, I imagine I've got another two or three years before I can say I'm totally healed, and I honestly may never be quite 100 percent again, but I'm OK with that. I'm just so grateful to even be alive at this point, I'll take anything I can get. If anybody has questions I can try and answer below. I think I have a pretty good idea of what HPPD is and how to cope and heal, but of course I'm no doctor and neither is anybody here. But I do think it's important to keep this community alive and pass on knowledge so others may benefit. As long as you stay away from drugs, eat healthy, exercise, remain mindful day in and day out, I think you'll give yourself a great shot at recovery.
  36. 2 points
    People that have never had to deal with mental problems or brain issues in their life will usually be dismissive because they've never experienced it. "You don't have anything to be sad about" is classic mental health ignorance. You should try to go out and hangout with your friends whenever you get the opportunity though.
  37. 2 points
    First - stop smoking weed. It isn't helping. Second - it would be beneficial for you to stop researching this and focus on overall health, mental and physical. I know you want it to go away. We all do. A bunch of us researching this on the internet trying to put the pieces of a puzzle together isn't going to bring any answers until some serious funding and medical research takes place. 2 guys in a lab doesn't mean shit until other researchers get on board and do multiple randomized double-blind peer-reviewed studies with sufferers and non-sufferers participating. Third - figure out what supplements may help and try them, along with exercise, healthy diet, meditation, yoga, tai chi and distraction. Try to socialize and do fun stuff even if you don't feel like it. Force yourself into the world. The best thing anyone suffering from HPPD can do is try to get their stress and anxiety down. Most symptoms should start to go with time as long as you live healthy and stay away from drugs. I know it's hard being sober but you don't really have a choice anymore unless you want this to get worse over time.
  38. 2 points
    You've been posting this for weeks now. Why not just post it when you post it.....
  39. 1 point
    The 1080HD version is available at resolution of my monitor. CLICK to SUBSCRIBE! I just recorded my screen and started showing some behind the scenes. I have a real camera, I can make audio but right now I wanted to just make something that shows how much research exists and was published on this topic and how can a researcher miss these papesr if I found them for my undergraduate thesis. Well, there is a self-biasing, and I have heard from very prominent researchers in the hallucinogenic research community that were surprised by the overwhelming amount of content and the quality of the content. What is interesting to me, is when new research about HPPD is published and none of this history is included. It is almost as if the only research on the topic was selected by the researcher to validate their point. Well, I read the papers. I paid $35 for a lot, and admittedly thank you to my two sponsors and the MANY sponsors over the years that kept and still keep the web site up. I have finished what I needed to do before I could dedicate my life to HPPD, and so I invite you to a 40 minute video of me just clicking around at some of my links, showing the actual papers, using my mouse as my voice and pointing out passages that are tremendously interesting and it blows my already altered mind on how researchers are unable to use research services. PLEASE GO TO MY CHANNEL AND SUBSCRIBE. I have a place donated for me to live in my area to allow me to dedicate a day's work to HPPD research, web development and my personal withdrawal to lower my dose of klonopin. I will record this. I am sure it will horrify/entertain you or perhaps you can put a face to the web site and past comments and I will be honest about what is happening to me. This video is a FULL image of my desktop while I navigate through files. So, as I said you will see some personal things (nothing obscene, but I have no problem with anything you will see. I am not adding music, so you can feel the freedom to choose to look at different sections at your leisure. Just skip around. If you find something that you want to point out, then highlight and comment it on the actual channel. I NEED 1,000 SUBSCRIBERS. I have 32. If you want videos that will break down this information and include updates and opportunities to work together, then subscribe. Subscribers are hidden (unless you opt to let it be show. It also is not a channel that says anything about HPPD. It is my channel, and will have topics of perception. This video will contain simulators that you have never seen. I will show different types of visual snow. I will show you a sample of many of the papers that I have in my library. You will see articles from 1969 on HPPD that describe the symptoms in almost the exact way we do today. I will show a military research study. I will include related studies, hints at multiple biophysics studies I designed. You will see some links and bookmarks that I am not bothered by, so you have no "gotcha moments" in the comments. Papers covering all aspects of this disorder. Enjoy, fast forward, comment on a section time and ask a question. I will have more videos. I am so uplifted to see the positive videos about HPPD from individuals with this disorder, and also I am excited to see the positive momentum of the Visual Snow Community. Similarly, I am glad the work we did with Depersonalization and Derealization had an impact. What I did not want to do is tell you, "HPPD is this or that... We only have this much evidence..." or other surface level washing of the topic. This is my personal desktop. (Yes, I like writing music and flight simulators) 😜 This is what I have in my online drives. This is what exists. This does not include the many gigabytes of data from the hppdonline.com web site, but that is protected. Please subscribe. I have this checkmark, and it enables me at 1,000 subscribers to do much more with my channel. Typically, 100,000 subscribers require a verified account or celebrity. I guess having 1000's of pages with you name on it because of HPPDonline.com pages and publishing research or paying off my Google rep (jk) earned me this badge. It is time to get REAL serious about HPPD research. I have taken my vacation. I have read much of the new theories on HPPDOnline.com and I am so excited we are on the same page without talking to each other. We are looking farther than the GABA inhibitory system with the 5ht inputs and GABA outputs and looking at activation cells and the role of Dopamine. Functional structures and pharmacological observations. The first paper I was a primary researcher and author (and programmer and CEO of the non-profit that paid to host the research for Mount Sinai School of Medicine) has nearly 100 citations. It is a landmark characterization of the disorder and contributed to validation DPD/DR for the DSM-5. I have this designed for HPPD. You saw bits of it and the many revisions on my drive. I have updated more and I have completely re-hauled it. I will need help from the community. I am awful at raising money. I feel guilty for asking for money, even if that money is what will make this work. Unlike what many may believe, I would be homeless if it were not for my family's home. I have been a caretaker for a few years, and dealing with my ADHD symptoms that have been disabling for so many years. I am ready now. We are all definitely ready. I have never thought I would see the day there is TOO much information about HPPD on the Internet, but that much of it is garbage. I promised I would dedicate my life to this, and this is where I feel most energized. CLICK SUBSCRIBE! - David S. Kozin
  40. 1 point
    This disorder is by no means fun or enjoyable. For me, it's like having a life long learning disability. For years my nervous system was constantly pumping adrenaline. The visual don't go away, however they aren't interesting, or enlightening. Getting focused on anything took a huge amount of effort. Enjoyable? No. With work i wad able to compensate for some of the symptoms, and over the decades I've learned to accept that I'm stuck with hppd. But fun? Yikes! NO! I too used to love taking psychedelics as often as I could. Sometimes for a week at a time. If I had known I would get this disorder, I would have never touched the stuff.
  41. 1 point
    Did some LSD in the Navy during 1972 and then several days later, had a flashback of the trip. Never actually came down all the way...I seem to have gotten stuck. I spent the first 5 years frightened and anxious. Lots of alcohol. Lots of snow and tiny dots in front of my eyes. Things move in front of me, much like floaters. I think the roaring in my ears is the worst. Lots of noise. Never quiet...hard to sleep. Parts of my body seemed disconnected. Don't actually register. I could see my arms and legs but, never felt them in space much...if that makes sense. I think the hardest part is knowing there is something wrong with me. This seems to undermine my shaky sense of self. Loss of self esteem and worth...depression...worthlessness. Removes confidence. Never really found any medical staff that had a clue. I've continued to spend much of my time deconstructing my entire childhood in the hopes I could find some emotional relief. Extremely helpful as my anxiety levels have been reduced, but never enough to eliminate symptoms...although after 45 years there has been some lessening. I've tried most of the anti anxiety medications. Most simply knock me out or rot my stomach. To be honest the only thing that has ever given any relief was alcohol. I eventually stopped drinking so much because it never stopped the symptoms. The best part seemed to happen the next day. I usually felt better. Still happens. There is some relief, noise lessens, things 'look' clearer, skin feels a bit more like skin instead of many layers. Symptoms return, but I often feel slightly better...not sure why, but in an effort to keep my liver functioning, I can imagine it's the answer. I try ever 5 years or so talking to someone in the medical profession, but never really gets me anywhere. HPPD isn't really on anyone's radar and most physicians seem to that have difficulty admitting they don't know the answer, or that I might have anything useful to say, etc. Anyway, I'm writing simply to introduce myself and share another experience with HPPD. It's good to know there is finally a site where people can go and share/read other experiences. Thanks
  42. 1 point
    Havent been here for a while, nothing has really changed in regards to my hppd, just thought id give an update to the med i started. Started taking a med called amitriptyline. Its an old antidepressant that was used back in the 60's for a treatment of numerous things. Its actually been doing me pretty good, the thing about this med is that it doesn't focus completely on serotonin like SSRIs normally do. This medication actually hits a bunch of different receptors in the brain which is why its more than likely it can cause a lot of side effects, non hppd related. The med hits a bunch of receptors because its used to treat a lot of neurological disorders like migraines and nerve pain, its also used to treat bipolar, ptsd, anxiety and depression, and helps you get really good rem sleep, ive noticed i dont need as much sleep as i used to and when i wake up my mind feels refreshed. Ive been on it for about two weeks, and i love it. It usually takes about 6 weeks for it to take full effect, its diminishing my anxiety, last night i slept without my tv on for the first time in a long time. While it hasnt helped my visuals it hasnt had any effect on them at all. So for those of you if anxiety is truly crippling you but you fear that visuals may get worse, i think this is a med you should try. Ive read that its also helped people with visual snow in the past. Take care guys.
  43. 1 point
    [Edit 2016.03.24:] Poll added http://hppdonline.com/index.php?/topic/5124-thiamine-cocarboxylase-the-poll/ Over the years have taken various B complex supplements. But recently tried Thiamine Cocarboxylase (one of several forms of B1) with notable benefit for fatigue. Then ran across this article: The Beneficial Role of Thiamine in Parkinson’s Disease http://www.neurores.org/index.php/neurores/article/viewFile/155/155 Am clueless as to why this form seemed more helpful ... and will experiment Aside from HPPD or PD, Thiamine has long been understood to be vital for neurological health. And its deficiency is detrimental, such as seen in alcoholics. But this leads to the question: Has anyone else noticed help from Thiamine (in general) or Thiamine Cocarboxylase? Please share your experiences and thoughts. Edit: The source of thiamine cocarboxylase that I am trying is this particular product: Bio-3B-G. http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf Have tried 100mg of Thiamine mononitrate (very common version sold) but didn't notice it. However just 3mg of Thiamine Cocarboxylase is helpful.
  44. 1 point
    Great post, thanks. Just to add to the clonazepam section.... Here is a system that I use which allows a lot of relief with minimal risk of addiction/tolerance (it's worked now for 10+ years). I use a 4 days on, 3 days off benzo treatment with 14 days off every 3 months to further clean the system: Clonazepam (1mg) - Thursday 6pm Clonazepam (1mg) - Friday 9am Clonazepam (1.5mg) - Saturday 9am Clonazepam (1.5mg) - Sunday 9am Please note that if I feel ok on any of these days and have no social situations, I often skip the dose that day. And, of course, you could pick and choose any days, but they need to be in blocks, eg, mon, tue, wed, thu. This works for me, but tread carefully as these are crazy addictive drugs... Maybe try 3 on, 4 off first and never skip the 2 weeks off part. This is essential to test your tolerance and addiction.
  45. 1 point
    First thing I would address is the "why me" focus. I had a very wide group of friends in the 90s rave scene and we hit it HARD... For some time I had the "why me" focus too, but what became apparent over the years is that the majority had some issues with the drug use, even if they were not quite as obvious as my hppd. Overuse of drugs will get to most people in one way or another, so try and look past the negative feelings that you were one of the unlucky few. I can't add too much more that K.B and Cosmic haven't addressed. I went from getting high in one form or another every day for 2-3 years to drug free overnight and it was very hard, you have to pretty much cut everyone out of your life who is part of the scene (for a while at least)... my friends I drugged with are still some of my best friends now, 23 years later, so it is only a temporary thing, if they are cool, understanding people.(in fact, once I quit, a few others joined me and the group in general realised we'd pushed the limits, though I had to move out of my hometown as temptation was too strong).
  46. 1 point
    I thought bacopa made me feel pretty good, if I remember correctly. It was one of the few things I tried that I thought helped and didn't worsen symptoms. I used to take it every day but in small doses. From my experience almost anything can worsen symptoms in large quantities, even stuff that's really good for you. The key to any HPPD treatment is to take it easy and not overload the brain with too much of anything.
  47. 1 point
    "In a survey of sixty five users of LSD, Holsten found fifty users who described post LSD disturbances eighteen months to four years later3." HPPD is wayyy more prevalent than people are estimating among LSD users. http://www.bjmp.org/content/25-years-hallucinogen-persisting-perception-disorder-diagnostic-challenge Its incredible to me that these findings arent more widely published. Hallucinogens are clearly neurotoxic. Holsten, F. (1976) Flashbacks: Clinical and social significance 1 ½-4 years after the first admission , Journal of Norwegian Medical Association; 96: 875-878
  48. 1 point
    “Danjoking, you're right. I apologize for my behavior” - TheMythos Yah post it if you want, it’s beneficial to compile all information we can. To be honest though I think everything is pretty much summed up and come to an end as far as the cause of HPPD. If you haven’t read the last couple pages, it’s gone over pretty thoroughly. Not that you’ll agree. Also please do not be rude to productive members like dayum_son.
  49. 1 point
    Also posted in "Introductions": Hi everyone! Ive been a longtime observer of this and the old forum. I was struck with strong symptoms of HPPD about 11 years ago after a heavy dose mushroom trip. Had all sorts of nasty symptoms(indoor rain/snow/static, floaters, trails and halos, tracers, light blobs, geometric patterns when eyes closed or in darkness/dark room, periphery vision movements, negative image retention, etc., etc., etc.). This went on for years. It affected every part of my life. About a year in, it was so bad that I contemplated suicide daily. My grades struggled, my relationship fell apart (she began thinking i was losing it--she was correct), my life was a complete mess. I honestly didnt even feel human. I felt like this messed up walking mind fucked brain in a body that doesnt even belong with it. I never could pull the trigger on suicide (no pun intended) and just dealt with it all the best i could. Things werent getting any better, but i was getting better at dealing with it all. Yes, it was 5 years of hell. A hell i wouldnt wish upon anyone. I thought my life was essentially over, that i would be this weird/disturbed socially awkward person with crazy visual anomolies that drove me nuts. Well, after that initial 5-6 years, things did start to dramatically change. I was noticing sever symptom decrease daily. I was actually feeling less detatched and not just by ignoring the feeling of detatchment, but legitimately feeling more like a person, not some detatched body imprisoned brain. I really didnt do anything special, the symptoms just faded over time to where i had no symptoms at all. I still have no symptoms. Well, none is a stretch, but they are soooooo mild that they arent noticeable unless i seek out noticing them. I have been basically symptom free now for 6-ish years. No flare-ups or setbacks whatsoever. The only thing i did differently at the time of symptom decrease was that i began taking tramadol daily for an injury i suffered in a car wreck (herniated discs L3-L5 lumbar region low back). I found it very helpful with my anxiety/depression mood swings that HPPD brings with it. I am not recommending/encouraging everyone go get on tramadol, all i can say is that it undoubtedly helped me during that time. Hell the tramadol timing with symptom subsiding may have just been placebo or coincidence, but either way, it had a marked effect on my visuals and mental state especially. Anyway, i write this to show everyone that recovery can happen. It took time, and alot of it, but it happened. It happened for me and my hppd symptoms were so strong/bad they were ruining my life. Stay strong everyone, (i know...thats easier said than done) the symptoms can subside and even disappear altogether over time. It happened to me, and i assure you all that i am nothing special. Good luck everyone. If anyone wants to know more detailed info on my journey through and out of the HPPD mess, just let me know. I came on here to provide hope and to help anyone that wanted my help. Again, good luck everyone, and have a wonderful day.
  50. 1 point
    I've changed my life from vegetarian to vegan. Not only because of hppd but for many other reasons as well. But somehow the drug experiences gave me the kick in the ass, so to speak. I am also more happy to be alive now. The world is beautiful, if you take a close look. In my opinion we just get a chance to have a closer look at this planet. People who never experienced this hppd-stuff don't know how lucky they are. Is it luck? I don't know, but their life seems easier. I don't think compelety negatively about hppd, but it is annyoing over time. Great idea to have a thread like this, btw. Your suggestions are good but hard to follow. But I will give it a try to change even more :-)
  • Newsletter

    Want to keep up to date with all our latest news and information?

    Sign Up
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.