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  1. 6 points
    Flashbacks and HPPD: A Clinical-oriented Concise Review Probably the best paper if you want to know what HPPD is and the treatments available. Interesting also the HPPD I and HPPD II concept. I went from a HPPD I to an HPPD II, and I think the division is spot-on. Have a good day! 13_Flashbacks-and-HPPD.pdf
  2. 5 points
    The Visual Snow Syndrome study carried out by Dr Goadsby is close to starting a treatment phase of research . Yesterday Jen Ambrose posted an update ongofundme : https://www.gofundme.com/visual-snow '' Hello Eye on Vision Supporters!I'm sorry that there was such a long delay in hearing from me, but I sustained an eye injury in Feb and am only recently returning to limited computer use. I do have an update from London to share with you. Patients have begun to be qualified and scheduled for testing. Scans are scheduled for May and June at King's College. This is an important phase of research, because what is learned from these scans will determine how we enter into a treatment phase of research. Without this phase of research, we will not be able to proceed to medication testing. With that being said, I've been approached about funding for Dr. Puledda's salary for another year. Dr. Puledda works under Prof. Goadsby and is the primary doctor assigned to the Visual Snow research at King's college. As stated in previous updates we need approximately $70,000 USD per year to employ her. Currently we have only raised $20,000 USD which is a far off sum from what is actually needed to secure her. Almost all of you reading this who have VS have likely undergone an MRI. You have likely seen the very high bill to your insurance, or you have paid out of pocket. It's not uncommon to see bills over $1000. We are very fortunate that King's College covers all of these costs towards VS research. We need to assist them though by being able to pay Dr. Puledda for her time and efforts on our behalf. We would love for you to become a monthly donor and help us achieve our research funding goals. You can sign-up as a monthly donor here:http://eyeonvision.org/donate-to-the-eye-on-vision-foundation.htmlThank you, Jen Ambrose Please everyone make donations!! I know you guys got visual snow syndrome from drugs ( just as the forum info section itself says : drug induced visual snow syndrome ) but the symptoms are the same . A cure could be on the horizon if we start making donations!!! I've posted links about few other rare diseases that have found cures( or are close to finding one) purely by making large donations and not giving up . This is what patient determination and donations can do : https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/ there are some other articles I came across a while back but I don't have the time to search for all of them again . However I hope that the above articles will inspire you to make donations for the visual snow syndrome research. It's the only option we all have left now !!!
  3. 3 points
    You are obsessing, no doubt about it. The likelihood of it getting worse, without any additional drugs, is slim to none. If you are staying away from drugs, then there are only a few things that could make your hppd worse.... SSRIs, heavy amounts of alcohol and stress. Avoid the first two and limit the last and you will not get worse. I would possibly look into CBT or something to try and get past the obsessive thoughts. and no need to apologise about anything... The forum is here to support, not judge.
  4. 2 points
    Fantastic to hear. People do have symptoms go away. Lowered anxiety can reduce symptom severity by reducing activity in the theorized GABAergic disinhibition system. Thanks for sharing.
  5. 2 points
    May 8 will be my two-year anniversary of taking the LSD that gave me HPPD. I remember when I first got HPPD thinking the acid was just hanging around in my system, sorta like a hangover, and that I just needed to give it a few days and it'd be gone. Then days turned into weeks and after two weeks I started to get a bit concerned. I saw a local therapist who had no clue what to do with me and then I eventually saw a psychiatrist who tried to help me with meds which didn't work either. I remember, despite being in a completely surreal 2-D world that resembled a video game more than real life, that I was always hopeful. I thought even though meds didn't help me that there was no way I was going to let this condition beat me, that I'd recover by the end of the summer. Then the months just kept adding up, one after the other after the other. I thought at first six months would be more than enough time to heal, then nine and then a year passed, and now here I am at two years. And I just can't believe it. I truly look at the last 24 months and they seem more like a dream than real life. But perhaps this is because, thanks to DP-DR, it's as if I've been living in a dream every day. I even remember when I first got HPPD actually thinking I was dreaming when I was awake -- that's how bad it was. I've had classic HPPD symptoms this whole time: palinopsia, visual snow, DP-DR, brain fog, tinnitus, etc. Some symptoms, however, are far worse than others. Even though my snow is still fairly prominent I hardly care about it. It's the DP that's the worst, without question. Anybody who doesn't have DP symptoms should be thankful because I'm here to tell you it's a nightmare. I've also had terrible macropsia where objects that are closer appear bigger and my eyes can't really focus on them without getting double vision. Thankfully after two years I've made more than enough progress to be in a position where I can cope day to day, and in general I'm able to go about my day without thinking too much about my condition. When I first got HPPD I literally couldn't go a few minutes without noticing something. Human-to-human interaction was always the worst because not only did people appear lager and more surreal, but my brain couldn't handle back-and-fourth conversations, much less witty banter that I consider the foundation of my persona. I truly can't imagine anything more traumatic than going through severe HPPD. Trauma comes in many different shapes and sizes, but it's the severity and length of HPPD that makes it so unique. Even though I've recovered tremendously since first getting HPPD, even though I've run hundreds of miles, done everything in my power to stimulate my brain, entirely altered my diet and health, read numerous books on brain science and general health and recovery, and prayed to God even though I'm agnostic, it's just no match for HPPD -- not one single bit. And so I've often thought: This is not something we were ever meant to simply get over, to simply heal from after a given amount of time. This condition, whatever it is, is completely and entirely ruthless and stubborn and unrelenting. It just seems like a monstrous boulder that you can't move no matter how hard you push. Whatever it is that's gone wrong in our brains is really, really serious and really, really bad. Not knowing what's gone wrong inside your head and not having anybody to help you or tell you how to heal is a complete health nightmare, on top of the fact that it's so terribly difficult to cope with this condition on a day to day basis. I tip my hat to those veteran HPPDers who've dealt with this for decades. You poor souls are some tough sons a bitches and will likely never get the credit you deserve for having fought this day after day, month after month, year after year -- but I salute you, as do many on this forum. The phrase I keep repeating to myself right now is "I just can't believe it." I just can't believe this happened to me. I can't believe I'm still alive after everything I've been through. I can't believe this was possible in the first place. I can't believe, after two years, that I still have a long ways to go. But the good thing is I'm finally in a place where I can handle this condition. No, I'm not "recovered," but I've healed a lot and though I still have a ways to go I feel I'm finally over the hump, that it's mostly downhill from here even though I'll still struggle and have tough days. I guess after years of giving myself time to heal and understand what I'm dealing with I finally know. I'm one of those people who will take years to recover, maybe three, maybe five, maybe even more. But I still have faith, just as I did the first day I woke up in a totally different reality, that I'll one day be me again. In closing, I'd just like to say, to all those who are in the darkest place imaginable, darker than anything you ever even thought existed: keep fighting. Keep going. Don't stop. When you stop, you die, maybe not literally on a macro scale, but certainly inside, somewhere in your soul or deep inside your brain. I've been there, as have so many others with this condition, and I'm here to tell you life goes on. It gets better. And given the seemingly exponential development in brain science, you should have more hope than ever that someday soon we'll get treatment. Perhaps no cure for a while, but I have great faith we will be anonymous no more, that we will soon see our day in the sun. Sending love to all those who are in pain, Keep fighting and never give up, It will get better, It will get better, -- K.B.
  6. 2 points
    Your story follows a very common theme here, as has been pointed out by above members of this site. I too had symptoms of HPPD from the time I was about 15 until 20. I did a lot of drugs in high school and at some point ended up with visual snow, depersonalization and slight afterimages, all of which are standard HPPD symptoms. After I graduated high school I actually took it easy on drugs my freshman year of college and within a few years I was symptom free. I took a few hallucinogens here and there but was always careful in never taking too much. Well, six years later all it took was a single tab of acid and I was thrown into a world and experience I wouldn't wish on anybody ever in the history of man. It's really clear that you're in a position we all were at one time and ignored. Don't be like us and ignore what your brain is telling you. Drugs don't work for you and your body type. If you keep doing them you'll regret it -- guaranteed. And not only that, you'll regret ever being born. Life on this planet is the greatest gift imaginable. Don't take it for granted. Doing drugs isn't worth it.
  7. 2 points
    Actually, I said you have pre-hppd because you need to think about them before seeing them. Not because you only have VS. As I said on the other thread... Your best bet is something like CBT to stop the obsessive thinking.
  8. 2 points
    Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:
  9. 2 points
    For me meditation has been extremely helpful. The practice allows me to intercept intrusive thoughts. When some negative thought arrives I can recognize it as being part of me, even welcome it, but i can choose not to unpack the contents of the thought. Over time the negative thoughts don't get exercised and the mental pathways on which they arrive start to atrophy. Just like learning to play a musical instrument, you need to practice.
  10. 2 points
    Just because you get symptoms slowly doesn't mean it isn't neurodegeneration. Many neurodegenerative diseases like Alzheimer's and Parkinson's come on slowly over the course of years and even decades. Last week a member of this forum posted a link to the first published study I'm aware of that proved hallucinogens can be neurotoxic: https://www.researchgate.net/publication/14821234_Degeneration_of_Purkinje_cells_in_parasagittal_zones_of_the_cerebellar_vermin_after_treatment_with_Ibogaine_or_harmaline So we now know hallucinogens have the ability to cause necrosis, aka cell death. In addition, we also know many people who get HPPD suffer from anxiety. Science has confirmed that with increased stress follows increased cortisol which creates a surplus of the transmitter glutamate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181836/ In addition, we know glutamate produces free radicals which attack and kill brain cells: https://link.springer.com/article/10.1134%2FS000635090905011X But glutamate is also excitotoxic, activating and killing NMDA receptors, which are the same receptors targeted in certain hallucinogenic drugs: https://www.sciencedaily.com/terms/excitotoxicity.htm Finally, it's thought glutamate is the missing link to signal necrosis after ischemia (loss of oxygen) wherein during even a very brief episode of blood loss glutamate is activated and thus triggers cell death: http://www.sciencedirect.com/science/article/pii/S0301008213001305 On the topic of blood flow, it's also been noted how LSD and other hallucinogens can decrease blood circulation in certain parts of the brain: http://www.nature.com/news/brain-scans-reveal-how-lsd-affects-consciousness-1.19727 I'm just saying, between anxiety and chemical drugs there's plenty of potential for excess glutamate, loss of blood flow and a possible triggering of necrosis. When I saw a neurologist this past winter he said he didn't know what happened to me but that I had symptoms of a stroke. I also know that in the weeks leading up to taking LSD I had a period of extreme anxiety where I didn't hardly sleep for about 10 days. It was without question the worst acute stretch of anxiety I've ever had. So for me there almost had to be some sort of a glutamate overload, and I assume for those who suffered from anxiety already prior to taking drugs or had a really bad trip that triggered an incredible release of anxiety and glutamate there's a good chance they were in the same boat as I was.
  11. 2 points
    these are the questions i recieved from the Groff Foundation along with my answers.. its kind of personal, tho my identity is concealed Shareing is likley a good thing. Maybe others may have similaritys in answers to there questions. When you say quite young, how young was that? Way too young. Likely 13 years old. It was with the influence of my older brother who gave me my first use of LSD. He led me in the wrong direction. Although people get HPPD from using LSD at any age and also they can get it from taking just one trip. The onset of HPPD was around age 15 years. How old are you now? I’m 38 years now. What do you know about the dosage and purity of what you took? I don’t know anything about the purity. It was just standard LSD tabs, “red dragons”, “Robots”, “Microdots”, Mushrooms etc., etc. I have also used DMT once. Was this multiple times, or just once? Multiple times (many) were your symptoms of persistent visual distortions from the beginning, or started later? If they started later, was there anything happening in your life at that point that you think may be related or triggered something? I had Persistent visual distortions from the beginning. I cannot recall anything significant happening later. Basically I had taken some acid, I had been up all night, and was tripping during the day. As far as I can remember, the trip was traumatic “bad” towards the end. As far as I can remember, I may have taken some Valium to help me sleep or to “nock myself out”. Upon awakening, I can remember saying to a friend, I can still see all the same visuals, and that was the onset of HPPD for me. If there were other people with you during the initial experiences who also participated, did/do any of them also have HPPD symptoms or other difficulties? None of the others had HPPD or related difficulties. what have you tried so far to clear the symptoms? Which things you have tried seemed to help some (and if so for how long), which did not help but made it worse, and which were neutral? I have tried many things to clear symptoms. Meditation (meditate 1 hour each day) many types, currently doing Bi-Neural beats, in an attempt to establish new pathways please see www.centerpointe.com This may be helping in some ways, especially stress levels and way I respond to it, activates relaxation response and strengthens “the witness”. Stress seems to worsen HPPD. Yoga in India with great saints / masters. See Link: https://www.youtube.com/watch?v=Pa314Rw-jao Faith in the Divine, whatever that is for the individual helps. Various Yogic tequniques.Basically just the correlating health benefits Shamanic work, see http://www.sotems.com.au/ Transpersonal work and Counselling, see http://www.ikoninstitute.com.au/courses/transpersonal-counselling Some Breathe work, Sweat Lodges. Trained in specific energy work, India also: this one focused on Neuro-Biological changes to the brain thru transference of energy, so it was attractive to me at the time. (Neutral) Some medications, Clonazepam, Keppra, Sinamet. Clonazepam seems to take the edge off it slightly. Also the same with Valium. Though the problem with this is that it’s highly addictive and turns me into a bit of a zombie. I am 100% medication free now. Lots of personal development etc. When I’m in “high states” from meditation, it seems as though I may get some relief from it, similar to transcendence. Temporarily, maybe for a few hours. This occurs when I’m feeling “happy.” Keppra likely made it worse. Caffeine and stimulants make it worse. When I enter a dark space makes it worse. It is worse at night time. With the personal development work etc. Managing and learning to master my own emotional state is helpful, though does not take away fully. Although when I’m in a peak emotional state, I would say there may be times when I do not notice it. For example: I have been into elite fitness, lifting weight. Possibly at those times that require so much focus i.e. lifting heavy weights, I may not notice at that time or get temporary relief possibly. Also building up my physical body has benefits. Feeling good about myself etc Tho i have now done this to a point that i have injured myself quite badly with torn tendons. I think the discipline of Natrual bodybuilding was my way of Hideing My HPPD from the world and a type of avoidance stratergy, so i dont have to deal with it, and people on some level. Any stressors to the central nervous system seem to make it worse. Lack of sleep makes it worse. Stress makes it worse. Obsessing about it / thinking about it and reading about it on the Internet makes it worse. I would like to try these glasses soon and see if they may help Irlen Diagnostic Clinic - Buderim, Sunshine Coast QLD Irlen Diagnostic Clinic - Buderim, Sunshine Coast QLDDYSLEXIA Problems Solved Is your child a poor reader? Are words and lines confused? Is there difficulty copying off the blackboard? Are they worried by... Headaches Glare Sore Eyes View on www.irlenclinic.com.au Preview by Yahoo Can you describe which particular distortions you are experiencing, and which ones of these are more-or-less always there and which come and go (if there are some that come and go)? All the visual distortions are basically, always there, unless I have temporary breakthrough as mentioned above. Colour distortion, movement, visual snow, halos around objects. Basically all of the visual phenomena. I have all the visual phenomena of hppd below taken from Google: There are a number of perceptual changes that can accompany HPPD. Typical symptoms of the disorder include: halos or auras surrounding objects, trails following objects in motion, difficulty distinguishing between colors, apparent shifts in the hue of a given item, the illusion of movement in a static setting, air assuming a grainy or textured quality (visual snow or static, by popular description, not to be confused with normal "blue field entoptic phenomenon"), distortions in the dimensions of a perceived object, and a heightened awareness of floaters. The visual alterations experienced by those with HPPD are not homogeneous and there appear to be individual differences in both the number and intensity of symptoms.[citation needed] Visual aberrations can occur periodically in healthy individuals – e.g. afterimages after staring at a light, noticing floaters inside the eye, or seeing specks of light in a darkened room. However, in people with HPPD, symptoms are typically persistent enough that the individual cannot ignore them.[citation needed] There is some uncertainty about to what degree visual snow constitutes a true HPPD symptom. There are many individuals who have never used a drug which could have caused the onset, but yet experience the same grainy vision reported by HPPD sufferers. There are a few potential reasons for this, the most obvious of which being the theory that the drug usage may exaggerate the intensity of visual snow. Another theory is that instead, there may be no change in the severity or magnitude of the visual snow, but perhaps the drug usage opens sensory pathways that result in the individual becoming more aware of any visual disturbances that may have simply not been noticed before the incidence of drug use. As for root cause of visual snow, some theories suggest that it is the result of thermal noise in the visual cortex or in the 'Optic Pathway' (encompassing photoreceptor cells on the retina, the optic nerve, and the optic chiasm[1]), as eye tests for individuals who experience visual snow often reveal that physically, the eye is perfectly normal, and in many cases the individual still maintains 20/20 vision. HPPD usually has a visual manifestation. Drugs affecting the auditory sense, like DiPT, may produce auditory disturbances, though there are few known cases. Some psychedelic drugs can produce temporary tinnitus-like symptoms as a side effect.[2][3] It also should be noted that the visuals do not constitute true hallucinations in the clinical sense of the word; people with HPPD recognize the visuals to be illusory, or pseudohallucinations, and thus maintain the ability to determine what is real (in contrast to some mental illnesses such as schizophrenia).[4] HPPD Visuals are a lot more amplified in the dark. At this time, given the time since they began, would you say that the intensity of your symptoms is decreasing, staying the same, or increasing as time goes by? Likely staying the same. Except for the way I manage it, as the threshold for what I can handle is higher; likely this has come about through meditation. So the way I respond to it is different. Sometime I feel I am making progress when I’m most engaged in life and have other aspects of my life “working.” i.e. career / relationships etc Maybe sometimes there are some improvements with all the work I’m doing on myself. I would like to fully investigate the area of Neuro-plasticity and apply various tequniques to my own life, I’m not sure if this would help? Is there anything else about your general health that you think could be relevant? No not that I can think of. How has your condition affected your life? that is, which things you want to do or need to do are difficult or challenging or impossible because of symptoms? My focus is not as good. It is difficult for me to achieve one pointedness because the visuals are there. I’m a very capable human being. It is just temporary while I get things back on track. I left school at year 11 because I did not know what was happening. I went on to do a diploma in transpersonal counselling, though did not quite finish at the time due to a possible “secondary gain.” At present I’m working on various business projects and in training as Hypnotherapist. This has made my transpersonal / spiritual practices more challenging as I have the HPPD to contend with at the same time unfortunately. It’s like I can do everything and everything, although it’s not the same, because I have the additional “world” to contend with, at the same time. Which makes many things more challenging and it can be exhausting. People with HPPD tend to isolate themselves a lot. I do "hope" i have coverd everything. I am always happy to share more, and always open to skype if you feel it would be beneficial. I would love to hear about any suggestions you may have. Im willing to jump right in and give anything a try.
  12. 1 point
    You're basically giving yourself two choices: Smoke weed so you can fit in and risk having severe stress and HPPD the rest of your life, or be open with your friends about your condition, how you're struggling and how you can't do any drugs, and recover and live a normal life again. Try and take a step back and realize how short sighted it would be to smoke again and risk damaging your brain forever.
  13. 1 point
    9 months down the line. Sat in my room with just a dim lamp lighting my room and I can honesty say that nothing is moving, barley any visual snow, at the beginning the snow was bad, very intruding, now I can see all of the minor details of my wall, little cracks, dust, marks etc. with only a light glaze of snow. Feels fantastic that I am beginning to get back to normal. Feel free to ask me any questions, because my experience has been really bad, life altering. all the best guys
  14. 1 point
    As i've discussed several times before, I use a 4 days on, 3 days off benzo treatment with 10 days off every 2-3 months to further clean the system. It has worked for 7 years now, without any sign of tolerance or withdrawal. I tweak "the recipe" a fair bit, this is my current system: Lorazepam (2.5mg) - Thursday 6pm Clonazepam (1mg) - Friday 9am Clonazepam (1mg) - Saturday 9am Lorazepam (2.5mg) - Sunday 9am
  15. 1 point
    mgrade, 1mg of klono is easily enough to get withdrawals.
  16. 1 point
    The question is not random at all. It is a great one. (I am going to speak to those without significant DP/DR, but the individuals that have lasting altered perceptual disturbances that at least in the early part of the disorder result in significant distress.) I started talking on the original forum in 1998. I was less than a year into the disorder, and happy that somehow found a name for it (Thanks to the old HPPD board by Andrew). So, I know there are many who have had HPPD for 40+ years like MadDoc above. I can say that the vast majority of them have adapted to the symptoms, and some of us *cough* may be better off with HPPD having affected out lives vs. death or the other few awful outcomes that accompany substance abuse. How are the Visual symptoms? Do I still have the same visual symptoms? Generally, the symptoms do reduce with time. I do take clonazepam, but admittedly I am unable to honestly say if it has caused me more trouble than if I had not started taking it. I think there is a place for benzodiazepines, and a meta-analytical look at posts on this message board could yield an interesting paper or an easily designed research project could shed light on some empirical data on this question. For me, it was the thick static (a severity that I saw figures and cartoons in the spinning pinwheels of the static when I closed my eyes) that prevented me from driving at night and my night vision made looking at the sky impossible and all but the brightest stars and planets would be distinguishable. The purple afterimages at night would take over my vision if I stared off into space. It would be followed by a neon green "veins" in the shape similar or = to Kluver shapes. I can tell you that during times when I did not have access to Klonopin, the anxiety and body feelings are far worse than the visuals, but the visuals are worse as I would expect because in a withdrawal the brain has not had a chance to adapt to the normal receptors. However, my vision would only be an issue at times it would be for any person with or without HPPD when they would be more aware of their vision (e.g. driving at night on a two-lane road with oncoming lights, staying up too long or looking through a telescope. Excessive glare.) my symptoms have not changed. Truthfully, they are worse, but (NO PANIC) I am certain they are the result of my vision actually getting worse and I need glasses. But, I have been putting off going to get my eyes checked. Iff in one month I haven't made the appointment and can report to anyone about it, please call me out on it. Right now, I have trouble with street signs, reading text close up and my vision was impossible to determine a "number" when I was last tested in 2004 because of the visual issues, and I make sure to take my medication before getting my eyes tested for when driving (and at least I pass these for now). (I have a lot to say, so I will try and stay on topic the best I can, but you wil get more than you asked as a result.) Perception of our environment is one of the strangest and most interesting parts of PSYCHOLOGY that I know. I can go a few days without my symptoms becoming a thought that reaches my conscious awareness. So, did I see haloes, walls move, and other visuals during those few days? I would say I saw them just as much as I was consciously aware of the birds chirping around me (they do all the time, but how often do you notice them?) that I had absolutely no real recollection of. We can attend to only so many things, so if I am having sex then I can tell you with 100% certainty that at this point I don't think about HPPD during or after! When I am writing on this message board, I can write for a few hours and talk about the symptoms but not be occupied by my own. However, just as I can now -- I look away at the wall and I see the monitor after image, the wall is moving upwards, everything is still in ghosted vision, Haloes and afterimages follow everything I see -- have these visuals they do not cause me distress. I am more concerned for those who are going to get HPPD and for the individuals who received it only after a few uses and for the people where other disorders interact with the mechanisms of HPPD to make it more difficult to accept that I am my own. In general, I know people in almost every class of profession and life but notably, none are jet pilots or dentists and also not aware of any of us being a military sniper, and these others where perfect eye-sight is required are doing very well in their lives. When they are not, the cause is usually linked to anxiety and depression that exist with HPPD and experiences of depersonalization or the visuals staying distressful can be an issue without addressing the other disorders. I have ADHD (which is finally getting research to support it as a biological brain disease, so I don't need to validate it but I am 38, have 4 papers in medical journals but live in my family's basement) which is the reason I have been gone so long. I designed the PHP front-end and MySQL backend for the Depersonalization research with Dr. Simeon in a hyperfocused binge and I designed and published research because either I was illicitly taking or finally prescribed Adderall to provide me the ability to complete a task). I also have a "lasting disorder" but it is "cured" which is my right leg's tibia (shin) had a complete spiral fracture and fibula broken like twigs and I almost required amputation, but instead, they used a scalpel to start a 25cm or so cut along my calf and then used surgical scissors and cut through my fascia to prevent compartment syndrome, put a rod through my knee cap down to my ankle and screwed my leg together and I had to wear a wound vacuum 24/7 for 4 or so months until the wound reduced dramatically in size (three times a week I would have the sponge changed by specialists) and then I could get a skin graft to be the fine leg they saved. I was very lucky. However, It causes awful restless leg symptoms (all of the little nerves slowly coming back, and a lot of feeling still doesn't exist on that area of the skin that is a giant scar) and standing for a day will cause me to feel like my knee is locking up, I can't go up and down stairs without using my arms in that case and I have to rest for a day (I can manage the pain if I am not moving, but if it gets too bad I do take tramadol and I will take it to sleep). Before this, I was taking 10-20mg Oxycodone every4-6 hours including when I would suddenly awake as it wore off. Eventually, I asked to step down and I am only telling this story because I am an Addict, and telling your doctor to reduce your narcotics is something I am proud of. However, I am still taking a combination of meds that we were reducing in small steps (until my father was diagnosed with brain cancer and so far we haven't decided it is good to rock the boat) that a substance abuser would consider a dream to have each month: d-Amphetamine, Clonazepam, Tramadol but I can promise my opinion of these are completely different. Do I still forget my keys and it has been over 2 months and I have yet to get a replacement to my driverse license I lost somewhere? Yes. However, I did keep excellent records and cared for my sick father in a way that I managed his medications, condition where nobody would have said I was inattentive. It is just how my brain attends to things, so like HPPD it is part of my biological situation (but we can learn to adapt and even take advantage of some of the things. If hearing 1000+ stories from people with HPPD makes me an expert on the topic, then I can tell just from your last sentence tells you already understand our best defense. Humans are generally very resilient and adapt to a lot of weird conditions. I will may not have daily leg pain, but I still have a titanium rod and I wouldn't try competition cycling, and I can't finish a book until I started taking meds so I can function in our world and did I overcome ADHD? I am getting closer, but as my psychiatrist said, "Your brain is special. That is all you will get for my diagnosis on you. I fill out numbers for your insurance." So, in my opinion, you are going to do fine. Very early on, about 1 year into it I was going to stop looking for my own cure and worrying if it will go away, and it enabled me the freedom to study it and observe it without excessive bias towards seeking a magic bullet cure and be realistic about what the challenge will be. Your only real limit is not landing jets on aircraft carriers at night. - dk
  17. 1 point
    Hi! I'm a philosopher/scientist very interested in HPPD. Could you please post the response that Grof foundation has sent you? (I know this thread is very old, but I thought it won't hurt to try) It is very importaint to me, because I'm surprised that HPPD is so rarely mentioned even in very high quality psychedelic scientific literature. It would be great to know what Grof foundation state about this issue. I'm sometimes attending to conferences talking about psychedelics and I never forget to mention the risk of HPPD and the fact how little we know about this problem. That's why this answer might help me to better understand the issue and share it with fellow scholars. Best regards and I apologise for necroing this thread, Invoker
  18. 1 point
    How are your other symptoms such as dp/dr and your anxiety or any other symptoms? I don't suffer too badly with vs what bothers me most is things appearing to move and warp slightly, also great to hear you improving man keep it up whatever your doing
  19. 1 point
    You haven't destroyed your life. I took psychedelics for 6 years and I ended up with visual hallucinations that, I'm assuming, will never go away. But you know what? Life is wonderful and I feel fortunate for every day I wake up on this planet. You experimented with drugs. Lots of people do. Give yourself a break. More importantly, give yourself some time. The healing process can be slow. A positive attitude can go a long way to helping you recover. I'm no big shot expert on hppd, far from it. But I have had it for a long time and I found getting focused and getting on with life was the best medicine. Hang in there and don't despair!
  20. 1 point
    Exercise is important but equally important is to not overdo it. If your brain doesn't handle lots of exercise then you should listen to it and take it easy. It sounds like you may have been overworking yourself before you got HPPD so that could be part of the problem. This is why yoga could be beneficial. I really think, as Fruitgun said, yoga is especially good for HPPD because it activates the parasympathetic nervous system which seems to be inaccessible for a lot of us with anxiety. I would recommend hot yoga if possible. I've always, always felt way better after doing hot yoga. I would say just remember to go slow with exercise. Start with light jogging, yoga, a bit of weights, and then steadily increase. If your brain is feeling overworked then listen to it and stop. You'll be able to work out hard again but you need to gradually work up to it. If you're not meditating already you should be. Meditating has helped me tremendously over the last few years since getting HPPD and has totally changed my life. Here's a post I made about food a while ago that's really helped me: http://hppdonline.com/index.php?/topic/5344-a-routine-thats-helping-for-newcomers-especially/ You said you drink tea, which is great. Tea had helped me a lot. Just watch out for caffeine. Green tea, black tea, oolong, etc., all have caffeine. I'd recommend chamomile, tulsi and especially hibiscus since it's one of the best antioxidants. You need to eat as many antioxidants as possible to help your brain. Cutting back drastically on sugar, refined carbs, alcohol, etc., will also help your brain a lot. Turmeric is a good one too. As far as friends go, you should definitely still hang out with them if you feel comfortable, but I know it can be really difficult. Just tell them what happened and that you can't do drugs and you need some time to yourself. They'll understand.
  21. 1 point
    Guys, I cannot thank you enough. I even cried some from your positive answers. Really. I have read them over and over. I guess I need to hear from others who have had it. I am quite deep down in dwelling on this, blaming myself for destroying my life. But I need to turn away from those thoughts. Firstly, I will nerver use drugs again: obviously some people can do it over and over but for me this is my body telling me never to use again. Because my doctors believed this to be exhaution syndrome, I have really changed my life a bit the last months. I am more tired than before so I sleep alot, at least 8 hours a night. I eat healthy. I replaced coffee with tea. As of today I will quit snus which is a kind of tobacco we use in Sweden. I keep alcohol to a minimum. What do you guys think of work-out? I will definitely look into yoga. But if the brain fog increase during exercise, should I take it easy or is it even good to force the brain to get used to the exercise? I guess I have also seen friends a little less then I usually do, again because I thought this was from exhaution, and all I needed was to rest alot. But I guess now things point to HPPD, it would be better if I just try to live normally? Again thank you for taking time to answer me. I dont know you guys and yet you do it to help a stranger. You are really good people.
  22. 1 point
    I agree, very odd behaviour... not sure if it is some misplaced joke... but mgrade, cut it out, the guy is clearly in the same boat as the rest of us.
  23. 1 point
    Me too. The brain in general is just fascinating. This article makes me wonder how much the 5HT2A receptors play a role in HPPD, but then again I always come back to the fact people get HPPD from all sorts of different drugs that don't affect 5-HT receptors, so it can't just be a serotonin receptor problem, right? At the same time I've also thought it so interesting how HPPD symptoms are so similar to the symptoms you get while tripping, which makes me think serotonin receptors are therefore the culprit. I just wish I knew...
  24. 1 point
    Ayahuasca contains DMT. I don't remember who said this but when it comes to DMT it's best to have heavy gauge wiring installed in your head (not the exact quote but you get the idea). I used to smoke it long ago and it's a POWERFUL psychedelic experience including total loss of your surroundings and body. There's no real way to ease into this substance. DMT can really leave you rattled and bug eyed. I remember some people experienced something spiritual but some swore they would never use it again and these were people who were very familiar with psychedelics. If you're prone to negative symptoms after using psychedelics I would stay clear of it. I don't know if it would cause long term hppd symptoms but I remember seeing tiny colored flash bulbs for a few days after use. My two cents for what it's worth.
  25. 1 point
    I've seen a few of your posts accusing people of not being 'real' and I have to say it's massive insult and extremely weird, I'm here asking for help with this terrible condition, nobody would put their time and effort in to writing these posts pretending to have hppd! And yes crosshairs like a scope as in two lines crossing over each other so I can easily split the pill in to 4 pieces, if your gonna keep accusing people of being 'Russian spies' and not being 'real' then please go away and don't comment.
  26. 1 point
    I remember a few people here who tried ibogaine when they had hppd and totally fucked up their lives. I would be very, very cautious. All of these psychedelics work on similar receptors, so have the potential to make things much worse. Out of interest, what kind of dose of LSD/Shrooms were you doing... microdoses, or enough to start to feel the effects?
  27. 1 point
    I'm currently experiencing a set-back/flare up due to what I think was due to second hand pot smoke. Could have also been due to stress or a combination of the two. I was doing pretty well before but I feel kinda messed up now, almost back to square 1 again. My DP/DR is terrible again, which I had learnt to manage, and now I have some balance issues and sometimes I can see some movement in my visual field again, which I hadn't experienced in over a year. You say your visual increases havn't recovered since...but has anything else? I can deal with the visuals...I just hate the DP/DR.
  28. 1 point
    I know it's really difficult but I'd try give up caffeine and nicotine for awhile cause they made my symptoms a lot worse overtime especially the anxiety which basically in turn makes you notice your other symptoms more and makes hppd a lot worse. Don't give up man you have to give it time and trust me it will get better try stay natural without any pharmaceutical drugs unless you really really need it. My symptoms at the beginning were as extreme if not more so than yours, I was almost like in a full blown acid trip all day everyday, with pretty much no sleep, severe dp/dr to the point I thought I died and was living in a dream, and anxiety attacks 4-5 times a day and severe anxiety that just would not shift, I stupidly gave in after just over a month and got prescribed clonazepam which really works but I took it everyday for well over a year now and am now dependent on it so if you are going to take some type of benzo listen to jay's advice he has a good schedule for not becoming addicted which I wish I'd seen before I started. I'm currently weaning myself off very slowly and it's very difficult. But good luck man things do get better just stay sober, eat right and workout hard and have a hobby or something to distract your mind.
  29. 1 point
    This is so interesting, especially considering I've been basically pushing this theory -- right or wrong -- the last few months. The way Dr. Teichberg explains it is exactly what I've been envisioning could happen -- again, right or wrong. The fact is, no matter if you have HPPD, DP or VS there are a few common bonds that absolutely cannot be ignored: 1) Anxiety. It's far too common to dismiss. It's not like a few people with HPPD and VS have anxiety -- it's the vast majority, far more than is common in the general population. 2) Trigger. Though there are reports of people who's VS symptoms come on slowly, these seem to be in the minority. In general people with HPPD, VS and DP have some form of incident (panic attacks) or agent (often times drugs) that acts as the damaging factor in giving them their condition. There is a clear before and after. 3) Healing. While some people do not "recover" it appears a vast number of people make their way back to a state of normalcy by a process of healthy living. Sometimes it takes many years, but what can't be denied is that a clear recovery is taking place. When you consider all of these factors I just can't get past the idea that we aren't experiencing some form of cerebral injury. I really firmly believe accepting this fact will go a long way in bringing about change to this community of sufferers. We are not people who are imagining these symptoms. We are not crazy. We were not always mildly schizophrenic and then became full-blown mad as the result of a few drugs. I really believe we have suffered some form of an injury and that what we're dealing with is far more neurological than a commonly cited DSM condition. If I leave one mark on this site and on this condition I really hope that this is it.
  30. 1 point
    If you keep searching for issues.... You will start to see the little natural oddities in your visual field that are perfectly normal. Stop freaking out... You don't have hppd... Rejoice... Enjoy life... Forget drugs
  31. 1 point
    I honestly think one of the biggest problems in bringing awareness to this condition is that there's at least three different groups -- HPPD, Visual Snow Syndrome and Depersonalization-Derealization -- all of whom have very similar and overlapping symptoms yet all of whom are mostly unaware of the other and convene in different parts of the Internet. If you combined all these communities together there'd be a much larger, single group that could do a much more effective job of bringing about awareness and funding as everyone would be working together. There's some really smart people on the DP forum and same goes for here and I'm sure many other VS pages. It's just that everyone is so scattered, even within their own communities, and so it's difficult to have a movement or revolution when there is no unifying party.
  32. 1 point
    I hope it works. Pff I had a horrible migraine just like u did last week and now my symptoms have worsened in the last couple of days. I'm extremely scared that it won't go back to the way it was . I was finally making some improvements before the damn migraine attack .
  33. 1 point
    @Jay1 ok thanks for the advice. I've decided I'm giving myself 5 months of eating healthy, and meditation( never thought I would meditate) before I start any sort of drug to help. I have faith that time will make me better. I think my body was used to being stoned all day now it's not used to being sober. Thanks for all the help and I will send you a gift when I get cured. My parents said they give up on my health because I won't start meds. But I know deep down I'll get better over time. And I've accepted vs I'm trying my hardest to make myself like it as weird as that sounds lol it makes the sky look crazy @Jay1
  34. 1 point
    If you are in a place where you are even thinking about smoking weed, let alone taking more trips... You are very low on the ladder. You are literally risking your sanity for the rest of your life. I've had this shit for 21 years now because I didn't take it seriously when I reached your stage and carried on taking drugs (mainly lsd and mdma). My life became immeasurably worse and not a day has gone by that I haven't been in serious mental and physical pain. I had to take 3mg of Klonopin to get through my wedding day.. Is another trip worth that sort of life? Drugs are clearly not for you... Enjoy that you learnt the lessons of mushrooms and came out relatively unscathed.
  35. 1 point
    I'd throw them in the trash... Prozac sent me crazy. If your parents need info, i could take a phone call if it would help?
  36. 1 point
    I have tried it... Did seem to boost my mood a bit, but you need alot, like 10g per day. I'm not really sure how meds or supplements solve an issue like this though. I think something like CBT or meditation would be much more helpful. I would keep any kind of med or supplement as a last resort, not a first resort.
  37. 1 point
    Honestly, I'm not sure what to tell you. It sounds like you have a severe form of HPPD (I had similar symptoms as you for the first few months before they started to fade) wherein CEVs are your strongest and most disturbing symptom except they occur when you're awake, from what I gather. You have to keep in mind that though there's a general list of common HPPD symptoms almost everyone has a different experience with this condition and many of us have symptoms that seem almost unique to our own personal brain malfunction, as appears to be the case in your scenario. For example, I have severe macropsia. Though there have been a few others who've reported this symptom I've yet to come across anybody who has it as bad as I do. I literally couldn't even see my hand (it was too blurry and big) if I put it a foot in front of my face when I first got HPPD because my macropsia was so bad, and to this day my hand appears completely blurry if I put it a few inches from my face. It sounds like you've seen quite a few doctors and been on your fair share of meds, so I'm not exactly sure trying out more medication is the best route. Is there anything that's made your symptoms better? Perhaps a time when you felt happier throughout all this? One thing that's helped me is to constantly take inventory of my emotions, HPPD symptoms and body in general to see what makes me feel better and worse. It's taken two years but I have a long, long list of things that help and things that don't. It really makes life easier to navigate when you know what to do and what not to do, especially with regards to eating.
  38. 1 point
    Jay hit the nail on the head. Just stop using psychoactive drugs. I first noticed mild symptoms after my first use of LSD. I continued using psychedelics for years and the visuals definitely got worse over time. Sobriety is your best option. Chances are, it won't get worse if you're clean. Hang in there, it's going to be ok. I've lived with visuals for some time and everything is fine.
  39. 1 point
    I've read of a few people trying it, though obviously it didn't work wonders or else it would be more well known around the community. I think choline is often taken in combination if I remember correctly.
  40. 1 point
    https://en.m.wikipedia.org/wiki/Acephalgic_migraine
  41. 1 point
    I've made this post sticky... Sounds like great work, so far. Let's all get donating! If you need anyone from the UK for the test, i'm happy to do it... My VS is more like a blizzard
  42. 1 point
  43. 1 point
    Walking anywhere away from civilization. I like to identify birds and plants on each journey. I guess I'm a nerd wherever I go (:
  44. 1 point
    Do you think fatigue has anything with your symptoms turning on/off? When I'm tIred my visuals tend to be more prominent. Driving can be stressful so taking a long drive without anxiety sounds like a good sign.
  45. 1 point
    My hppd sounds a similar level and still is after 20 years, but don't panic. I carried on drug use for years after a severe trip on a microdot that first took me to this level of hppd... You have done the right thing and stopped now, so you have a far better chance of recovering. Just do everything you can to avoid stress, if you have to quit work/college or whatever for a while, do it. If you are a strong minded individual, I would probably recommend getting some benzos to give yourself a break 2-3 days a week.... This will also help you get a sleep rythmn back, which will help your recovery (maybe get some melatonin too). Be sure to fully research benzo use though, it will seem like a magic bullet and is all too easy to start using everyday. Having an addiction and withdrawals along with severe hppd is probably a living hell though. Plenty of horror stories on here, be sure to read them, if you do go down this route.
  46. 1 point
    My HPPD was pretty bad when I first got it, also from LSD. I had most of the same symptoms you have as well as many others and a severe case of depersonalization. I literally thought I was dreaming every day of my life and couldn't tell what reality was anymore. The best advice I can give you is to be patient. Read up and down these boards, especially recovery stories, and stay as far away from drugs as possible. Whatever you do don't make an emotional decision about whether you want to live or die. You need to give yourself a lot of time in order to improve, years even. Just keep in mind you can recover as long as you live a healthy lifestyle, although it may take a while. Nothing in life is permanent!
  47. 1 point
    I wanted to give an update on my sine met use: had to discontinue >_< a few weeks after starting last December I developed a flaky rash on my face near my nose and on my back and groin. I thought it was something I picked up from a hot tub but unfortunately it was the sinemet. By the end, just taking even a quarter of a 25/100 would send my skin into a burning rampage. Such a shame it really helped. At least it stopped my muscle fasciculations. Unfortunately my upper life area might be kind of reddish for the rest of my life >_< every few weeks I have to use topical steroids to calm it down so it doesn't peak but it is red. Thank god for facial hair.
  48. 1 point
    I've been taking generic cold-eez to try and knock this cold out and I think I feel worse on it. Definitely wreaks havoc on my digestive system. I would say SSRI's in general make it way worse. As I recall antibiotics do also. Caffeine as well, although I drink green tea in the morning because I feel the benefits offset the negative effects. Too much sleep is worse than too little sleep for me. L-theanine for sleep seems to screw up my neurochemistry as well.
  49. 1 point
    It is a precursor ('ingredient') for serotonin. You can buy it at health-food stores here. Taking it will increase serotonin slightly (sort of super mild SSRI). Worth a try since it is mild and you don't need to go through doctors. It doesn't change dopamine (my favorite ) but dopamine is only one piece of the puzzle. http://en.wikipedia.org/wiki/5-Hydroxytryptophan I can for sure say that the 5HTP has reduced my afterimages by A LOT This is the first I've read of this benefit. This is great. Are these negative afterimages or positive ones?
  50. 1 point
    Im not sayin never smoke again. Just if you do, your brains probably not gonna "heal" back to 100%. Taking a break will let shit reset itself. I was never anxious on weed, but it kept bringing about more and more symptoms. It is what it is. Now a blunt is like snorting a line of ketamine for me. When i got HPPD it felt good. If had mild DP since may 2011, heavy DPDR since around november 2011.