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  1. wishing the best for you there will be better days. Keep on pushing brother
    4 points
  2. Hang in there my friend.
    3 points
  3. Yea, keep on fighting... I know you've been through the ringer lately, but you are a very strong person and will get through this
    3 points
  4. Hi yeah from up North in Scotland. Where men are men and sheep are terrified .
    2 points
  5. Good for you…I am praying the hospital will help you. You are tuff.
    2 points
  6. You might have better luck on reddit at /hppd There are plenty of idiots there who also had some ultra mild hppd and want to believe that severe hppd is just a myth so they can carry on drug taking.
    2 points
  7. One very severe counter-argument against your "theory": In 11 of 12 cases, taking phenothiazines worsens HPPD severely. For "normal" anxiety patients, they just work as a sedative. Many of the usual anxiety patients are also extremely worried about their health, so why don't they get HPPD when taking phenothiazines? It just does not make sense, there would have to be much more non-hallucinogen-induced cases. Even if not "trained" well, at least a small number of anxiety patients should notice the increase of visual phenomena caused by phenothiazines, get worried about it and falling into the "HPPD loop". But there are, as far as I know, 0 cases of people developing HPPD after phenothiazine usage without a past hallucinogen exposure. During my psychedelic expieriences, I completely didn't notice any of my HPPD symptoms. They suddenly occured more than a month after my LSD exposure, so I definitely did not have any "training". Some people suddenly get HPPD from one day to the next, years after hallucinogen exposure. How do you explain that? Why do many people exist who have very(!) strong visuals, but no anxious or emotional component at all? Why do some people have a sudden remission of visual symptoms from one day to another after years of "training"? My visual symptoms are not correlated in any way with anxiety. Sometimes I feel anxiety and visual phenomena are weak, and sometimes visual phenomena is strong and I don't feel any anxiety. For 3 months, I didn't feel any anxiety at all and barely put any attention on visuals, but visual phenomena was still getting worse with the same speed as befor and afterwards. Why do I have extreme mood swings from anxious to deppressive and (rarely) even euphoric expieriences which are very trippy. Do usual anxiety patients feel strong euphory just as under drug exposure? It was also normal and acceptable for me to take hallucinogens and I felt completely no anxiety about the use of the drug. During my bad trip and afterwards, within the first 3 months of my condition, there was not a single moment where I was not 100% sure that I'm safe and will be cured very, very soon. So why did I get HPPD? So many questions that cannot be answered by your claim. But I'd bring a counter theory into the discussion: People whose HPPD symptoms fade fast, persuade themselves that it was just imagination. No it was not. It was real for you, but you can't believe it as soon as you can't feel or see it anymore. You don't want to believe it. Your mind is rewriting the story in a way that you feel that everything is / was under your control. Because it doesn't want to accept that control is an illusion. And of course your mind favorites the explanation allowing you to continue hallucinogen use and having the control whether to develop HPPD or not. It's hard to admit that you don't have any control whether to develop this disorder or not. Everyone here knows that HPPD highly interacts with anxiety. There are people understanding this connection from the first day of their condition trying to work against their anxiety. "Stop being anxious" is a very good advice, but not a cure. Nobody knows if there is a brain damage or not. If someone suffers 40 years from this condition, and yes, there are such cases, I don't know what's the difference to a brain damage. You may say "the difference is that you can escape the loop", but remission can happen in cases of brain damage as well because the brain has the capability of working around the damage. Anyhow, you can assume that many patients do everything they can to get rid of anxiety. In the end it does not matter which theory is right. You cannot cure HPPD by saying it's anxiety-based just as you cannot cure depression by saying it's sadness-based. This discussion is damned to end in the middle of nowhere. There is no key and there will always be patients who are completely therapy-resistent, even if they are working harder on their cure than 99% of the other patients. Anyone can be cured, but not everyone.
    2 points
  8. You're not a scientist, you don't know what the members of this forum experience visually and cognitively, you do not add anything constructive to the forum, therefore I think you posting here is totally useless and undesirable. If it was only anxiety, we would all be healed since most of of the people who seek medical help get misdiagnosed as having anxiety.
    2 points
  9. I found it fascinating and ironic that Jacob got the full blown symptoms from his conventional scripts that his doctor gave him.. He never received hppd from the lsd until taking pharmas that was a mixed concoction that catapulted him into the severe symptoms of hppd. Crazy shit, this is what scares the duck out of me to pharmas to be honest.. I have full blown hppd with escalation and acute tinnitus.. Its horrifically horrible to say the least. Crap I was getting suicidal thoughts because I thought I was the only cool guy in the world that had it.. We should set up a expo or something to meet up at from all over the world.. That would be a interesting arrangement.. Don't u think??
    2 points
  10. It's been 12 years since I got dpdr and hppd now. I still have symptoms like afterimages, especially during nighttime and when I get tired. And dpdr occurs from time to time. Even though some symptoms are still there, they are no longer the focus of my day as they used to be during the first 3-5 years with the disorders. It is a blessing to wake up and not have my dpdr/hppd to be the first thing I think about in the morning. To anyone who is in the beginning of this suffering journey: you will get through it. Life will get easier. I still haven't returned to how I was pre-disorders. But I have accepted that I might never again feel "normal" as I was before. I honestly don't even remember what it feels like to feel normal. This has become my new normal and I no longer feel fear in being this way. I do grieve the loss of my old normal, but life feels much easier now that time has passed. I wish everyone luck and strength on their journeys. And once again. Forever thankful to this forum and people here who comforted me in my biggest time of need.
    1 point
  11. I wanted to bring awareness to these peptides. I have tried most of these. Cortagen seemed to work really well as it reduced afterimages and gave me cognitive enhancement. Cerluten/Visoluten dulled the pain I get when I see light trails at night. This is a brief post as I have limited time but I think Cortexin/Cortagen are valid treatements.
    1 point
  12. Central Scotland here, where we are terrified of the men who terrify men and sheep.
    1 point
  13. Hppd seems to be a functional neurological disorder. Symptoms can morph between range on any FND symptoms including head pressure and dizziness. anyhow my best suggestion is the steady coach program on YouTube. It’s free. You will understand the core concept of stress and past trauma, how to resolve in order to resolve symptoms. https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder/
    1 point
  14. My HPPD has defiantly decreased since getting it back in 2020 and I believe it still very slowly improves. As it improves in very small increments, it can be difficult to notice progress.
    1 point
  15. Hehe yeah I’m at the 26 year mark-lucky me! I will say that before I was put on Klonopin, my symptoms definitely improved, like kasco said-in small increments. Sometimes I would go days to a week without being bothered by symptoms. Then I would have a flare, but eventually go back to baseline. I heard that it’s different for everyone though. My motto is- there’s always hope!
    1 point
  16. Maybe the only way they could is if they monitored our reactions to certain medications? Then they could record our symptoms. But it would still not be physical proof to them because they can’t see it. Also, I guess it probably wouldn’t be good to have different meds given to us because it would mess us up more than ever. Even a person without HPPD would get really messed up if doctors experimented on them with psychotropics.
    1 point
  17. Yeah when I first discovered that I had HPPD, I asked my neurologist if I could have a qEEG done. He said we didn’t have anything like that here (I guess meaning in the part of the States we live in?) Does a PET scan show anything?
    1 point
  18. Sadly, probably not. The only test i've heard of to show anything is a qEEG (not a normal EEG). The only success I ever really get with doctors is to calmly explain what hppd is, show them research from other doctors and try to guide them to the correct conclusion (basically letting their ego think it's done some of the work). It's a fucked up system, but it is where we are currently at, in the UK at least.
    1 point
  19. Yea, there's a few of us from the UK here... I'm from the midlands Welcome to the board
    1 point
  20. Just a side note, anyone thinking about the blindness thing (we've all thought it)... Just try wearing a dark blindfold for 24 hours. It's way harder than you think!
    1 point
  21. 26 years is a really long time. I understand the going blind thing tho don't think it would make a difference to be honest as it's etiology is from the brain with CEV (closed eye visuals) included. That is really awesome that you have your husband as your rock etc Yes can totally relate with the caffeine thing and any other stimulus like pseudoephedrine or even anti depressants definitely exacerbate and apmliy symptoms visual and non visual.... along with stress / any stressors to the CNS. Thanks for that, yes klonopin cold turkey from a high dose can be dangerous/ that's why I was monitored in hospital, tho yes certainly comeing off greatly heightened / worsened all symptoms as well as DP DR etc and new symptoms like agoraphobia etc K pin withdrawal can be brutal. Thankyou so much for your the words and for your prayers etc. Really means alot to me. Will keep you in my prayers too. Wishing you all the very best.
    1 point
  22. I am also a long-term sufferer, about 26 years. My closest friend knows that I have HPPD and I jokingly (or maybe half-jokingly) said I wish I’d go blind and she said, “I don’t think it would change anything, since you still see stuff with your eyes closed.” I am so glad you have your parents as a great support. I have my husband…no clue what I would do now without him. I was functional enough I suppose, through my 20’s and 30’s, I had no idea about HPPD but knew my issues were due to my last acid trip. Sometimes I didn’t even notice it, then it would get bad, then go back to baseline, etc. So, when I was like 33(?) I was addicted to Red Bulls and was drinking them every day. Also exercising my buns off! Whaddya know…everything got worse! (Imagine that.) Like, intolerable. I Googled of all things “caffeine overdose” because I figured maybe I OD’d on the Red Bull. I went through the maze and ended up on a Wikipedia page about HPPD! I couldn’t believe my eyes. (I can never believe my eyes, har har.) So I was like “Great! Klonopin is the treatment!” I immediately told my family, and went to a neurologist, long story about him not believing me but then grudgingly looking it up and agreeing to prescribe me the Klonopin, etc…now I’ve been on it literally every single day since. Not one day without. And I still sometimes get flares, like now. I thought my recent flare had subsided, but it’s back. So I was really affected by what has been happening with you, because I know it would literally be Hell on earth if I were to be taken off that medication. I’m always keyed up each month when it comes time for my refill, nervous, sad thinking about the future if I am cut off. My family needs me, I have grandkids (that makes me sound so old! I’m “only” 45. Maybe that is old.) Yes, I didn’t even think about the expense of seeing someone like Dr. Locke. I can’t afford that either. Now I have forgotten my entire point. I swear it’s the HPPD. I get so forgetful and foggy that I start off trying to respond to what was written to me, then end up talking about something completely different and unrelated and forgetting what the original convo was supposed to be about. Ugh! Sorry. I guess my whole point is that I really hope you start feeling better and I will be praying hard for you
    1 point
  23. Yeah i understand they have to live tho it would be nice if they could make treatment slightly more accessible to the people who really need it.
    1 point
  24. Do you guys not drop into the dark web or similar when you can;t get benzos? That's how I used to do it before getting a script.
    1 point
  25. thankyou im actually Australia.. I'm a severe and long term sufferer / over 30 years. Yes a part of the law is that human beings have the human right to medical treatment, tho I feel I am got getting it sadly and therefore condition worsening and immense suffering. Reason things have been so worsened over the past 2 years is because I have had massive existential treat / stress and trauma that is not going away, yet. This has driven me to the edge with no relief. I'm currently in disability support also for severe hppd. I recently contacted Dr Locke in the USA / hppd specialist, tho he charges something like $500 USD an hour . That's out of my price range. I have played a key role in the existence of the hppd protocol study, tho that is 800K to get It started, don't have it yet and Still looking at funding options. Yes I have a mum and a dad they understand and they are awesome. They are likely the only reason why I'm still here physically today. Yeah I did a recent post about removal of eyeballs to see if still hallucinating tho unfortunately many think it would still be a yes because it's coming from the brain and not the eyes. Thankyou I appreciate the support. Wishing you blessings , peace and healing also.
    1 point
  26. Yup...exactly... although I never have mania, if anything I'm the opposite I'm usually sleepy and tired. I think all of these visuals tire me out.
    1 point
  27. I just read what you wrote and I thought it was FANTASTIC. So many similarities as to what I experienced/experience, despite currently taking Klonopin. (Been on it for about 14-ish years now) I got HPPD from LSD back in 1998. I had done LSD before with no issues, but it only took one damn random trip to ruin me. I loved the pictures you included. So accurate it’s scary. My husband knows I have HPPD and he’s extremely supportive, but sometimes he just doesn’t get it. He thinks it’s just visual stuff, and like it’s not a big deal to see snow or halos or tracers. Like it’s not scary, and he sees stuff out of the “corner of his eye” all the time and it doesn’t scare him. It’s not his fault he doesn’t fully understand, but at least he tries. I am going to show him the pictures you put in your book. This sounds corny but I am so proud of you
    1 point
  28. Omg I’m fixing to read this right now. And the bipolar thing… the psychs diagnosed me with Bipolar 1 like over 10 years AFTER I got HPPD. And now no one believes me because people who have bipolar don’t know they don’t have it Any sort of “mania” I experienced was either alcohol or psych drug-induced. And who the hell wouldn’t be depressed and anxious living with HPPD?
    1 point
  29. Okay so I tried to write a book about my 10 years of living with HPPD, visual snow, anxiety and depression (psychiatrists also love throwing the word bipolar around lol). I also included my previous drug usage in college before I had any disorders. Unfortunately I do not have enough content. This is all I have, I hope it helps our cause somehow. It's sort of like a diary and summary at all of my attempts at finding a cure. However after exercising today I still have severe visuals (it's almost 11 years now). For the first 22 years of my life I had no disorders and life was way easier. Shattered Perception, A Journey with HPPD and Visual Snow.pdf
    1 point
  30. You rock! But seriously? It would be a huge undertaking.
    1 point
  31. Yes! Definitely, maybe not likely, but I did have significant improvements after about 5 years. Some of the most improvement actually.
    1 point
  32. This is true of most diseases and disorders. Why don't you (and other members) let the doctors do the diagnosing - they are the ones who defined the disorder. Read more posts. Some have no anxiety. Some are actually glad to have the visual anomalies. I personally know one on the DPSelfHelp forum. You think you know all Native Americans? So your personal experience make you knowledgeable about everyone's personal experience? n=1 is a very small sample for statistics Clearly you are very impressionable. Perhaps you have learned to turn on or off HPPD at will. Patent that, you'll make millions and put the cartels out of business. Again, leave the diagnosing to the doctors It would be 'cool' if a little CBT would solve the problem. Read the posts. Plenty have tried CBT and other psychological techniques. You seem to be focused on your perceived reality. You need to respect other peoples experiences and not just your own. Nothing wrong with discussion anxiety and it's effects, etc. It is your manor of 'discussion' that provokes negative responses Please do. Dr A has published many papers regarding the long term aftereffects of LSD, etc. And these do not declare anxiety being the root of the problem.
    1 point
  33. I was extremely ignorant to the possible side effects and long-term damage that could be obtained from the drug I took, especially the small dosage. I was carefree and inexperienced, being a huge noobie with drugs and looking for some sort of relief. Again, I don't care if you do not believe me but I know it's the truth and that's more than enough for me. You can't just go into a disorder forum and declare the disorder isn't real, expecting 0 argumentative responses. Maybe if you approached this with a better tone, you could've explained your theory without disregarding HPPD in its entirety.
    1 point
  34. Matty O when he gets negative reviews... Were clearly not the only ones with a real condition here, if you think every person on this forum is makiing up their symptoms you’re probably clinically insane, and i agree, you should definitely go talk to real doctors, they will laugh at your immediate dismissiveness of mental disorders, just like they do the doctors of old who dismissed forms of insanity like schizophrenia. You sound ridiculous, you also appear to have a severe ego complex in my opinion. also its ridiculous to sign your name in forums especially since your screen name already shows Matty, we know who you are please do not be redundant. I’m guessing you’re young, if you want to do anything in medicine i highly suggest you do way more reading than just immediately jumping in to theory. ALSO, you claim facts but you provide zero evidence to support your claims, which also ,akes you appear to be ridiculous. All your posts in this thread are terribly cringy. You just have a belief with no evidence, but you feel strongly about it regardless, it makes you no better than a religious fanatic. P.S. The cure for male pattern baldness is swimming with sharks... once you see the shark it takes your mind off the hair loss and bam! All the hair is back, rogaine is now obsolete.
    1 point
  35. This is not my posting history. Anyway, let's stop here. It does not make sense. The opinions are set. Everything that needs to be said is already said, continuing would be just looping the same arguments again and again.
    1 point
  36. You had luck that it worked for you and it subsided. As I said, I did not put attention on symptoms for 3 months and they still got worse. Damn, what a proof, you're a genius. Does a psiorias patient feel the itching under such circumstances? Does a deppressive patient feel the depression in such moments? No? Oh, then psiorias and depression are not real as well I guess. Just not focus on it and it'll go away, problem solved! Why did not all the doctors had your great idea? We can cure 50% of all diseases with this method! Please, shut up. You have no idea. You just don't know what real HPPD means because you did not have it.
    1 point
  37. Guy, you disprove yourself. If it has nothing to do with previous drug exposure and is only a mental process, then there would have to be plenty of non-hallucinogen-induced cases. How does it work? Nobody knows. You have diseases like the Gulf War syndrome that can also suddenly occur years or even decades after the damaging exposure - and in this example, you clearly see a brain damage on the MRI in some cases. Not surprising. You refuse to believe anything that could imply that you don't have the control about the severity of the symptoms. HPPD is real. It could be that it was not HPPD in your case and you really just flipped out. But don't do the mistake thinking your own expierience is valid for everyone. People who don't have expierience with chronic mental illnes are always thumb enough to think patients could escape if they just really want it - I thought similar before getting HPPD. But that's just bullshit. It was not your great capacity coping with mental illness in your case, it was just luck. There are people who have indeed great capacity dealing with mental illness - but every single person of them needs months and years of training to develop that capacity.
    1 point
  38. I think you just want to justify your psychedelic consume because you already have mild HPPD but you still want to trip. However, if you continue to trip it will probably result in severe HPPD.
    1 point
  39. Someone win the lottery so we can sponsor the fucking event?? Yeahghhhh
    1 point
  40. Thanks for mentioning it, I had never heard about the book. Now I've bought it, and read a couple of pages. It reads much like an introduction post here on the board, it's written in very plain language. Looking forward to reading more
    1 point
  41. @AlphaBeta Ok on the skydiving/ shark idea, the psoriasis patient will not be paying attention to their skin, but to the shark or rapidly approaching ground.. a complete diversion of the senses. The 'hppd' sufferer will be fully using their eyes the whole time, the very organ that is the source of their perceived issue. It's completely different. If 'hppd' was real then surely they would see it more under such circumstances? Here are some choice quotes from your posting history: 'My eyes water sometimes when visuals get strong, but there is no pain'... sure you ain't got the visuals cos your eyes are watering? Why would your eyes water if you had visuals due to brain damage? Sounds like you are doing the same thing as I do to bring on 'hppd' visuals at will. Eyes glaze over, dont blink, eyes get a bit watery, low and behold I get visual snow, floaters, after images, the works. 'Sometimes I see a rainbow-like ring around white lights'...... so does every one else in this world, its caused by refraction of light by your eye lenses. Stare at the light and your eyes water a bit, refraction increases due to the tear and you get more rainbow. Reading this has actually made me remember how I used to get the same effect after swimming as a kid, due to watery eyes from the chlorine in the pool! I think I may have upset you because I am implying that all this is your fault. It isn't. I think you are doing all this stuff subconsciously, that is the mind loop / trap that I describe in full effect. You are I think a classic case of the theory, give me a full list of all your symptoms and I will explain them all with simple physical explanations, go on...
    -1 points
  42. I came on here trying to help and wasn't expecting this kind of reception if I'm honest. The flakiness of your convictions is plain to see. We have @AlphaBeta who's vision is different when his eyes are watering and can see light refraction when he looks straight at a light source, and denies their own posting history. Also @Kalo who appears to have taken some psychedelics then seen hppd less than a week later... and made no connection between the two.... can you not see that to an outsider to your community how suspect all this seems? You all seem to be determined that you have a serious visual health issue and appear blissfully unaware of the power of the subconscious mind. Now if my theory WAS right, it would be pretty cool wouldn't it? Bit of cognitive behavioral therapy and it would be bye bye hppd... This forum is clearly no place for this kind of discussion, I think I will take this to the scientists, dr Abraham et al. Thanks. Matty.0
    -1 points
  43. Facts: All 'symptoms' of hppd are experienced by people without hppd or have never taken psychedelic drugs. People who think have hppd fixate on these 'symptoms' as a result of health anxiety about their past drug use, they become overly attentive to Normal visual disturbances that others dont care about and create their own condition. All people whose posts I read in hppd forums either exhibit classic signs of severe anxiety, or have found relief via treatment methods and drugs that mirror those used to treat anxiety. Native American indians who take peyote NEVER get hppd. Why? Because it is normal and acceptable in their culture and they feel no anxiety about the use of the drug. How do I know this? Because I have taken lots of psychedelic drugs and once thought I had hppd, then realised that I was being overly anxious and what I was 'seeing'was normal, I'd seen plenty of times before taking drugs and chose not to worry about it. EVERYONE. STOP STRESSING. YOUR VISION IS FINE. YOU DO NOT HAVE BRAIN DAMAGE. YOU HAVE SEVERE ANXIETY, MAIFESTATING ITSELF AS HEALTH ANXIETY OVER YOU VISION.
    -3 points
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