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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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  1. Today
  2. I need a Grant Writer. If anyone on this board is interested to help the Neurosensory Research Foundation (www.neurogroup.org) with the required skills, please contact neurogen00@gmail.com Thanks
  3. Yesterday
  4. Hi, I'm so glad this is moving forward and getting so professionalised. I had HPPD for a few years after taking 0.5 tab of MDMA and being put on a ruthless assortment of psychiatric drugs and misdiagnosed with bipolar. I finally gradually stopped all medication and my HPPD stopped. The worst were the novel anti-psychotics. Five years later, I paid the NHS a visit to reassess this completely incorrect diagnosis, and they confirmed that I had never had it, and that I had Complex PTSD, a far more fitting diagnosis. Also, depersonalisation came with my HPPD and is often seen in trauma cases. I wish you all all the best. I know how alienated, suicidal and terrified I felt when it was at its worst and I hope you all get the treatment or respite of symptoms that you so clearly deserve. Love, Lynette
  5. Hi all, I was a part of this community many years ago as a wee lad when my symptoms first began to settle. I thought I'd login to post an update as to the current mental state I'm in, what recovery (as good as can be) is like, and what you can expect if you're relatively new to HPPD. I first had HPPD symptoms after taking a one-time dose of mushrooms, I believe around 2 grams; the initial trip went fine, in-fact it was quite a lot of fun. After coming down, I didn't feel normal.. I felt strange, odd, different, but couldn't pinpoint what it was. It was like something had clicked, snapped, broken, or unhinged and my feeling and grasp of reality was stirred too far up the side of the pan and began to spill over the edges. I believe this was depersonalization, or derealization, to this day I can't pinpoint which one exactly because it waxed and waned. Nevertheless, in the span of a few days, visual symptoms began. These ranged from mild visual snow, trails behind lights, ghosting, flashing purple lights which would dance and radiate over streets in the night, a melting or waving effect to some surfaces, slow rotations etc. All very abnormal for my young self. These symptoms stayed gradual and stayed persistent for quite some time. I only realized what was wrong after my brother had similar effects after he dabbled in mushrooms, but his went away, and so did his friends. That's when they told me what they think it could be: HPPD! I was gobsmacked, I was scareeeeeeeeeeeeeed. I was worried that I was brain damaged forever, and it all felt very doom and gloom. I came to HPPDonline, and read. I read a LOT. I obsessed over getting this terrible shit to go away, to leave, to evaporate from me, to disperse at once before I hung up the phone. Reading positive stories was the only thing that helped, the only thing other than family and friends. I took a lot of downers such as valium, clonzepam, klonopin to ease the anxiety, but in hindsight, all these did was make my DP/DR worse afterwards. Now, my HPPD symptoms were nowhere near as bad as some stories that have been through this forums - so this is all very subjective to me and my experience. I tip my hat to David S for continuing this service, for he has helped many many people, and most likely saved lives by projecting this issue into the world. These symptoms stayed and bothered me for 6 years give or take, when gradually I became tired of worrying, tired of stressing, tired of guillotining myself over what has happened. Now here we are, in 2020, my symptoms are present, but ONLY if I concentrate on them, only if I allow them to bother me. Sure, I do notice them, no they don't scare me any longer, but I have accepted them for what they are. I've used a lot of tactics, such as "omg I'm a wizard that can see forces that aren't there!!" or, "it could be worse" or, "you can atleast still see", what I'm getting at is, it could be a lot worse than what it is now, to any degree. But it will subside (or at-least appear to, whether or not you stop noticing it, or there is a remission of symptoms) things will get better, mentally and physically, for you, for people helping you, and for the whole thing. It will take time, some symptoms will vanish, some may not. But you will be ok. You WILL feel relatively normal again, there will be moments where you absolutely forget everything about HPPD. And these moments will happen sporadically, some may last longer than others, but for me, time is the only thing that has helped. Don't do anymore drugs, take it easy on alcohol, try not to express your concerns to people that don't understand, you may worry them, scare them, or just annoy them. Take a break from HPPDonline, take a break from reading and fake it until you make it. Which you will Lots of love, J.
  6. Last week
  7. Jaz


    Just an update. On week 4 of lamotragine at 200 Has exited my snow a little but. It increased. Intending to get up to 350 not sure if it’s one of those gets worse before better type of situations. Does anyone have any experience. Thanks all for your input
  8. Sounds pretty intense man. I'm sorry to hear your symptoms are as strong as they are. I did Salvia a handful of times and it was some f'd up shit for sure, but it was not what sparked my HPPD. This forum isn't all that active. Maybe check r/hppd. Just don't smoke any weed or take Lions Mane as it's not some kind of miracle cure despite what advice the kids there may suggest.
  9. What I've found regarding Anti Psychotics. This is about what role anti psychotics played in the increase of my symptoms not decrease. As I was unaware of what HPPD was prior to taking them. I would say that for sure the visual changes began only after stopping the anti psychotics in my case. It also seems like there was a pattern of anxiety that occurred, sometimes very extreme anxiety, upon withdrawal which may have been a precursor to these changes. Or was just a coincidence. Prior to starting anti psychotics I only had visual snow.
  10. From what I’ve gathered I feel like the most probable cause of hppd is excessive serotonin 5ht2a up-regulation resulting in neuronal toxicity and subsequent neuronal death. The running theory is that hppd is caused by 5ht receptor death over time. I think that what’s causing the 5ht death is overexcited / overstimulated 5ht2a receptors following drug use. These neurons are connected to vision because lsd and pcp (leading causes of hppd) affect the visual cortex primarily. I think this because all of the things that seem to make hppd “better” stimulate gaba receptors which are function to calm overexcited neurons. (Valerian root, magnesium, klonopin, benzos they all stimulate gaba receptors). When a neuron is overexcited that means it’s firing too often-wouldn’t that mean that 5ht2a is firing too often?- and gaba makes neurons fire less often, thus quelling hppd symptoms. That’s just a hypothesis though. That’s why I feel like ssri’s make hppd worse. They must up-regulate 5ht2a because ssri boost serotonin. Moreover, we know anti psychotics don’t work either. Maybe this is because when serotonin levels are too low they induce psychosis symptoms. So maybe the cure is down-regulating 5ht2a but not fully blocking it? Just a theory again what do you guys think?
  11. I would love to hear from anyone that's had permanent vision changes since taking salvia as I've never actually met or spoken with anyone who has had anything near like the trip I had which caused me to have he continuing symptoms so I've also never spoken with anyone who's had any lasting effects. During the day I barely notice anything as long as I'm doing something, distracting myself in some way, if I sit down to relax that's when I can see that what I see intensely at night is still there, the chessboard patterns moving in a tv static pixelated way, movements of light like the stripes of a rainbow but wave like, like the waves washing in and out of a shore. Also during the day if I try to relax and close my eyes, the closed eye visuals can become so intense that I give up trying to relax and force myself to keep my eyes open and find something that will occupy me so I don't drift off into the intense closed eye madness that is not only seeing patterns but feeling my body move with them like being on a rollercoaster or the thing I can't remember the name of but they sit you in a seat in a kind of gyroscope looking thing and spin you round in every direction. At night when it's starting to get dark the chessboard structures become more and more noticeable the darker it gets, when it's completely dark I feel like I'm surrounded by tv static pixels that flash fast and move to make some truly amazing sights but the same as during the day when I close my eyes to sleep the patterns move so fast and get big and small my body starts feeling like it's moving with the changing shapes. In the last few years, I think it might have been caused by trying some kind of spice cannabinoid while in prison but I see very definite electric neon light moving along the chessboard structures, the best way I've thought to describe it is like plasma ball light but it moves in straight lines and builds patterns on top of and within patterns and has added a while new level of madness to my symptoms. When I finally get tired enough to start difting off to sleep ( without benzodiazepines, in the jail was where this was a big issue) I found myself appearing in different places or rooms that seemed familiar then when something caused the place I was seeing to change and I came back into my body the first thing I would notice was that I was the right way up again, when I was having the vision I felt like I was the right way up but on coming back to normal, up on the vision could have been upside down back to front but I only realised that wen I was fully aware of my surroundings again. I have stopped using recreational drugs for about 2 years mainly because of being in and out of jail but when I enjoyed taking ecstasy during my late teens and early 20s some of the tablets have me unbelievable patterns when I was coming down from the initial high, the best way I can describe these is, the same as all my visuals it's not anything physical that changes but the space in between everything, like 3d moving fishing net or spider's web designs that would seem to go on into infinity like if I spent time staring at them the patterns would go into the patterns which would go into the patterns forever. I've had one salvia experience since the first 20 years ago, probably around 4 years ago now. It was 60x extract and far too strong but when I started to become conscious again I felt myself merging with the couch I was sitting on and was getting bright tracers from anything that moved. Unfortunately for a good few months after this second try of salvia my closed eye visuals became like looking into the workings of a clock or a watch, repeated cog like patterns that although always had the same main structure, the ways in which they moved meant it never got too repetitive. I also had around a few weeks of seeing lsd colour movements in objects during the day but it never lasted long and has never come back. Thankfully the closed eye and darkness visuals that became so much more intense than after my first experience have calmed down to basically the same as I've always seen, possibly due to me being able to get cheap fake xanax bars and eating them by the handful. This caused unbelievably painful withdrawal when I got jail but if it helped stablise my symptoms and return them to basically what I had already been used to it was worth it. Because I use benzodiazepines daily the only symptom that gives me problems is trying to rest during the day and the closed eye madness that forces me to stay motivated or focused on something but when the gyms open up again I'll be able to go there and this will make my life a lot better. Thanks for taking the time to read this I hope I have explained things well because explaining the experiences has always been the hardest thing about having this condition for me and I am interested to know if this is the same for everyone.
  12. Appreciate the reply Jay. I kinda figured I was overthinking it. I'm still pretty new to this all and can get a little paranoid at times wondering if I've reached some kind of baseline or not. Thanks,
  13. Hey guys how’s everyone doing? Had pre-hppd symptoms for a year and 4 years of full hppd after dosing 2 tabs of LSD which felt like 10. It might have been 2CB. I just recently got diagnosed with HPPD though. Main symptoms are micropsia/macropsia, visual snow, geometric patterns, closed eye visuals, tracers, DP/DR, brain fog. I really have all the symptoms though. Was having full lsd flashbacks for around 6 months but they stopped eventually. Doing a lot better now though I’d say my symptoms have reduced at least 50% probably more. Things are becoming manageable.
  14. Whats up mgrade long time no see how have you been? Looks like you been doing some writing? Also to everyone: I just linked up with Oliver on Whatsapp, if anyone would like to join a group chat just send me your information for whatsapp and I will add you to the chat! Also for an update I am still doing a lot of work on trying to find something relevant for this disorder, after the long years of working on it though I'm extremely exhausted, and there have been so many other things in life that I have been trying to accomplish and keep together as well. I am still trying to make progress though and have been looking in to some interesting and relevant information involving other conditions that develop like symptoms and also hallucinations. Its become apparent that there are a lot of conditions of the body that are linked to healthy brain function, and when there are issues with these sections of the body, the brain does not function as it should, it isn't then per say, a requisite that the disorder lies solely in the brain, but could be elsewhere. I will try to share relevant information when I have time. I apologize to everyone that I haven't been as busy with this as usual. I do genuinely hope that we all end in a happy place and get a second chance, and I thank everyone that has posted here and talked with me and shared their information, it has been really encouraging and uplifting to continue trying. Thanks for everyone too that has been kind to me and reached out, I apologize also to anyone that I have not been able to help significantly, or have been rude to in the past, as I was under a lot of stress, and didn't have the best functioning brain for proper emotional handling. Also, Hope, the website looks good!
  15. I know, it's frustrating for me too. The formula in 1998 should have been the formula I listed, as it sounds like that was the only formula until 2006. What's more frustrating for me is that there are HPPD researchers ready to go awaiting funding, and I contacted David Kozin on Twitter because I know he knows helpful people, yet he ignored me and didn't respond. Wish there was a way to get him to visit his own damn site... A side note on DXM, a little off-topic: I remember there was a dedicated DXM forum, The Dextroverse, and I remember in the time I was there that it sounded like a LOT of people there had HPPD symptoms (visual snow especially) and dissociative disorders, and some came across as suffering from psychosis.
  16. Yeah, at that time (1998) i was using actifed to sleep in a regular way and had a few codeine doses... I tried to find the formula of Actifed back then but it's hard to tell. Pseudo ephedrine is now also well known to cause brain vascular events... Damn, how come we all cannot find a common pattern or trigger , i'm pretty sure we are all missing something crucial.
  17. Sorry, because I had to leave for work when replying to you I never got to answer your question about diazepam dosage. Now that I'm taking pharmaceutical diazepam my dose has dropped considerably but I take at least 100mg a day but sometimes up to 150mg, mainly in the evening, I was taking 2 or 3 10mg tablets before work then another 2 or 3 when I got home then before bed I take at least 4 or 5 and I tend to wake up every couple of hours for the toilet which is extremely annoying but lots of tests including a camera into the bladder and nothing wrong has been found so sometimes when I'm trying to get back to sleep and I'm unable to relax my eyes I end up taking up to another 5 10mg tablets it just depends. Because of the lock down in Scotland all the gyms are closed so I try to keep as active as I can during the day but I find it hard to motivate myself and am dying for the gyms to reopen as this was what really saved me while I was in prison, having access to cardio equipment on the wing I used the x trainer and exercise bike half an hour each every day and was allowed 3 days during the week at the big gym where I started training with long term prisoners and this tired me out, combined with the amitriptyline dose which was the only painkiller they would give me, enough to manage to get enough sleep to get by although without access to benzodiazepines my eye muscles were always strained and sore and although my anxiety levels were better than when I started the sentence I avoided speaking to anyone if possible and kept myself to myself, constantly doing laps of the wing to pass time and to further exhaust myself. The only person who I was able to have any real conversation with rather than the shit prisoners tend to speak about was with the clinical psychologist who has been the best person I've worked with in trying to explain my symptoms and I have been out of prison since the 31st of January and I'm still waiting to get to see another psychologist. I am basically self isolating at the moment as my neighbours are crazy, they smoke crack and take valium for fun which was why I ended up taking so many dodgy street valium tablets after getting out. But after my brother got me set up with proper diazepam and now also alprazolam I've politely told them that I cant keep hanging around with them as I really want to make the most of my life and make sure I never end up in jail again which would only be a matter of time if I was to continue keeping myself in the company of my neighbours. I am praying that the lock down will ease of enough soon so that I can move into supported housing, I already see a support worker once a week but she has no idea how long I'm stuck here for but when she comes we are making a step by step plan to make sure my needs are best met when I can eventually move to one of their secure units. Also they will be able to come to doctor, psychology and psychiatrists appointments with me so I will feel less intimidated by the person I'm seeing and from previous experience of having support workers at appointments I know I will be listened to more and taken more seriously. Things are starting to move in the right direction for once but I really only have myself to blame for being so reckless and not putting in the effort needed for my life to start getting better. The biggest challenge will always be managing my benzo use and I'm taking it far more seriously than I ever have as I know that nothing else eases the different symptoms in the same way so if I abuse them again I know what's going to happen again.
  18. Earlier
  19. Sorry to mention this again but it's common practice to provide short and long acting benzodiazepines together, some practitioners prefer using temazepam for sleep then diazepam during the day for anxiety while others prefer to prescribe nitrazepam because it's longer half life than temazepam removes the need to prescribe diazepam during the day. Anyway it's something I'm trying rather than committing to, I am already committed to life long benzodiazepine use and now I've stopped recreational drug use I'm focusing on making sure I have a constant well stocked supply while always keeping at the front of my mind what has happened before and will happen again if I don't keep on top of my intake as I see this in many ways as my last chance to get things right so I can function properly and productively, step by step of course
  20. i've had these all my life, don't think it's hppd related. Coughing, standing up too quickly etc puts that pressure on the eye
  21. Started coughing today and I started seeing intense stars. I've seen stars before while coughing or standing up or whatever throughout my life, but this was a real light show. They were really bright and lasted for what had to be a solid 30 seconds. I was concerned they weren't going to go away. I've never seen it this intense before the onset of HPPD. Anyone else had this happen? In my mind this makes absolutley zero sense. I was under the impression that the mechanics behind seeing stars was purely physical and directly related to pressure on the eye itself (Which I had just been checked out by a Neuro Ophthalmologist). Could be completely unrelated.
  22. Also bear in mind that I am already seriously addicted to diazepam, when I got released from prison all I could get was street valium and was taking 50 tablets a day every day until last month my brother got in contact with me for the first time in 5 years, saw my situation and set me up with a supplier of real diazepam and within a few days I went from 50 tablets to about 15 to 20 that I'm currently taking, having alprazolam for the past 2 days has allowed me to drop my diazepam intake to 10 to 15 tablets so so far it seems to be taking me in the right direction. I used to abuse every drug I could get apart from alcohol as a way of coping with what I was dealing with and either not being able to talk to anyone about it or not be believed if I tried to talk about it. I will never get the help I need from medical services in the uk so as with the rest of my life I used the last five months I spent in jail to motivate myself to get back to being able to live life properly again. I have had a good upbringing and have a list for life and knowledge, what has been holding me back is that to self medicate I've had to associate with people who have no interest in anything other than getting high, now I've been able to break free from buying street valium I have more time to think about how I want to live, I exercise and eat better, I am starting to find support and encouragement from people who can see I am serious about changing and I'm gaining the trust of my large family again, slowly but more genuinely than before when I was only really talking about changing and not putting any effort into it. I don't take any recreational drugs anymore and I am determined to show the psychologists and psychiatrists that my problem is so overwhelming and intense that if they won't help me the way I know works best that I have the will power and determination to start treating myself without falling back into the same old cycle of addiction and not caring for my body, my life or those who want the best for me
  23. The time when I tried it it was only just becoming available online that was in 2000, when I lost my fingers there were shops and market stalls all across Scotland selling legal cannibnoids, uppers mainly containing ethylphenidate, legal benzodiazepines and salvia. So many people ended up becoming seriously addicted, messed up their lives and their bodies, put enormous pressure on our precious nhs all so that a few people could make enormous profits before the new psychoactive substances laws came into place a few years ago
  24. And now I've thought about your theory I disagree, if I was to present for help with alprazolam addiction they would convert the dose of alprazolam to the equipotent dose of diazepam and bring me down slowly off of diazepam so if I am using alprazolam during the day, because of its short half life using diazepam at night would prevent any withdrawal symptoms until the next dose of alprazolam
  25. There is no chance of getting any benzodiazepines prescribed in the uk for more than 4 weeks, the last psychiatrist I spoke with said if we were in Italy I could prescribe clonazepam but here we have to stick to using anti psychotic drugs and prescribed me aripiprizole which made the patterns more colourful and Persian rug like. I have also been tried on olanzapine, quetiepine, buspirone and an anti depressant I can't remember the name of. For a while I was able to get proper pharmaceutical clonazepam from Pakistan and then India but with me being on license for good behaviour after being released from prison on the 31st of January I'm far too scared to try placing an order for these countries, maybe from Europe or America but I'm sure especially with the covoid situation an Asian parcel would be intercepted
  26. I'll address the rest of your post later, I just wanted to say that your idea of having Xanax in the morning and Valium in the evening is really not a good idea. Xanax has a short-half life, and generally won't be helpful. By taking Xanax all the time, and especially combining the two in the manner you're talking about, the likelihood of you ending up having some really bad withdrawals and side effects seems likely. Stick to the Diazepam, or Clonazepam preferably, but try and get a prescription rather than buying it on the street. I know you said Scotland and I have no idea what the laws are like there, but that idea you mentioned strikes me as dangerous.
  27. Hi thanks for getting back to me so quickly. If I never turned out the light I think I would have had an enjoyable experience as what I was seeing happening so quickly was fascinating rather than frightening. I would love to be able to use clonazepam I have tried it on the past and that as well as nitrazepam for sleep are the most useful medications I've found but I have no sources at the moment it is extremely rare where I live. The street diazepam here in Scotland is very poor quality so I've managed to find another route to obtaining better quality tablets and yesterday I got some alprazolam with them for the first time. I think I will probably use the alprazolam during the day and the diazepam in the evening as I get much more drowsy from diazepam. You're right in thinking opioid blockers reverse the effects of salvia, I read a study a few years ago and it was naltrexone in particular they were using and it stopped the effects of salvia in rats instantly. However due to the crazy experiences I've had ever since the first one and that I also have HME (hereditary multiple existoses) I ended up becoming addicted to painkillers to help me sleep and deal with the pain of my condition which diazepam and methocarbimol seem to be helping most with that now, anyway one pain killer led to a stronger one and I eventually got addicted to heroin. I have been on methadone for the last 10 years and I can definitely notice opiate effects on my hppd symptoms particular during withdrawal so to take a blocker would cause me all sorts of problems. When the next legal high craze took off around 6 years ago I had a short problem with ethyphenidate use then after they banned it I tried onecofcthe things they promoted to replace it and accidentally injected into my artery causing gangrene in all my left digits which they left to self amputate, a year later they were a rotten smelly mess so the finally cut them off. Unfortunately I received my first jail sentence of 3.5 months during the time I had black fingers and was cut off all the morphine, diazepam and temazepam I had been prescribed by my consultant and was left only on methadone, this amongst other things made me attempt to take my own life after having a serious breakdown but I've finally got some self determination in my life and am trying hard to turn my self around by using the gym and taking meds as meds rather than something to get out my face on. I have to go to work but would be great to talk with you further. Take care
  28. @muzcore84 coming here to get help and to help others is what it's all about.. I suspect there are others out there who had a similar reaction to Salvia. Your experiences may provide some insight into what they're dealing with. When I first heard about Salvia I had been sober for quite some time, so I, thankfully, next tried it. With its availability, I wonder if there are a lot of people struggling with hppd symptoms after using Salvia. I heard at one time it was being sold in gas stations and convenience stores!
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