David S. Kozin

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Everything posted by David S. Kozin

  1. I am making some cosmetic, functional and other changes to the website to test features and see if it will handle some future plans. I have had some very challenging years, but now I have the plans to implement and I am fearless. Also, I get really pissed off when the HPPD story is told incorrectly on large government-funded websites, drug treatment centers and places I would never have thought HPPD would even appear. Even to the relatively educated Psychadelic class, the idea that LSD could cause HPPD was at best an overstated condition, and at worst (most common) it was considered to be a myth. I must admit that the "Millenials" have really tried to reduce the stigma associated with the disorder just by joining Facebook groups for HPPD. Some of you have created videos, music, blogs and for me to see HPPD listed in online pamphlets for drug-addict treatment centers is AMAZING and SCARY. It is amazing that the information I have noticed is stating that HPPD of the Consistent Visual Type is real. Previously, flashbacks were recognized, but not the long lasting visual disturbances. That is Amazing. We owe it to you, the members before you and to the majority of the researchers who haven't slanted their datasets. This is Scary. I would rather have no study that a bad study. If a case report is published where a person is diagnosed with HPPD based on two criteria (1. Patient states they are experiencing hallucinations & 2. The patient stated the hallucinations began with the drug). The individual is treated with Risperdal (risperidone), which is recognized in multiple reports in the Archives of General Psychiatry and other literature (and many of our/my personal experience) to exacerbate HPPD. Consequently, there is a study that states a person with HPPD was cured with a drug normally contraindicated for the treatment of HPPD. The error is the diagnosis. If this was a freshman in college with a family history of schiophrenia, and who had early signs of a disorder belonging to psychosis, it should have been identified as Hallucinogen-induced Psychosis and part of the HPPD syndrome is that drugs like Risperdal make it worse. So, I have three studies. I am applying to a clinical mental health program and seeking an advanced graduate certification that would enable me to open up a clinic, practice counseling with a legal clinical license and this is my life plan. I would like to get hired at the Lab of the school I am applying to, and do so with my own research funding. (I know, I have promised a lot of things lately, but it seems there is always a crisis, but if I can eat and spend 4 hours a day to this project we will have these studies completed before I am finished.) Additionally, the degree will allow me to legally diagnose individuals that have HPPD with the formal diagnosis of HPPD. I would be a dedicated clinician to HPPD and related disorders, and if that doesn't use up enough time then I will work with individuals with opiate and benzodiazepine addiction. Creating a humane Withdrawal Protocol for Benzodiazepines in America would be one of the most significant contributions to addiction medicine since the biological model. I asked people to sign up to my YouTube channel, and I am at 25. However, I had nothing of value posted on my channel yet. Now, it has changed. Two sections of an interview with Dr. Henry David Abraham, where I asked questions and Dr. A answer about two very important sections on HPPD. I found them after many years, and they are from 2001. My youtube page is: Here are some images of HPPDonline.com and NODID through the years.
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  3. I forgot. Those images are not very clear, but anyone can look up hppdonline.com at the Internet Way Back machine, and see how much this community has done. There is some very useful information contained in this archive, which would take forever to download unless someone who is very savvy could obtain the files they have in their archive. I have begged people to follow my youtube channel, and I realized I wrote about this in the message above, but YouTube is ADHD crack, and I forgot to include the link. AND CLICK SUBCRIBE. Click Watch on the boring watch video. 10,000 Views is an important Metric. I will put up more videos, but these 2 are classic: CLICK ME TO SEE DR. ABRAHAM VIDEOS: https://www.youtube.com/DavidKozinVerified
  4. Current Topics in Behavioral Neurosciences View File Current Topics in Behavioral Neurosciences Submitter David S. Kozin Submitted 06/24/2017 Category HPPD Research Articles  
  5. Version 1.0.0


    Current Topics in Behavioral Neurosciences
  6. Here is the article that appeared as a book chapter. I am sharing it for the purpose of academic and general research for the benefit of the human condition. I do not want to give away the details that I will present, but I will be giving a critical analysis of it, which can have good and bad points. My video review will be part of the series of videos I will provide that will cost a nominal fee per viewing (for the first 6 months or so, and then it can be open to everyone.) However, it takes a lot of work to create, read, pay for the articles, student loans and put together the content so I have to stop feeling guilty for asking for money. This one is free, but as I discussed on the Facebook HPPD and DP/DR group, I will be returning to research and providing research reviews on my youtube channel, opportunities for individuals to learn research methods as a lay person or for work to design and receive funding for their own or co-designed research. If you have issues with the article, good, bad, in between you are encouraged to try and work through reading a research article and make notes either publicly or for yourself. I will go through it from a unique perspective. Even the general emotion it gives you. You get to be the judges. - David Kozin THE LINK IS BELOW: A copy will also be placed in the section for documents also. Current Topics in Behavioral Neurosciences pp 1-28 (2).pdf
  7. The potential for problems with the downregulations of serotonin receptors with LSD and epigenetics. I am going to need an aid to help with research compiling.
  8. Right here. Break time is over. My ADHD is becoming increasingly better managed. I lost my father, but this allows for a lot of powerful changes to happen and to do them with the best of intentions. Yes, I do have research ideas. No, I don't have a cure I have been hiding. No, I did not read any e-mail in the last 2 years with the exception of one I was explicitly expecting, so I am backing up hard copies and then wiping all of my mail and other areas clean, starting my design and plans for building my own Tiny Home with Support Room (So, I can travel to Burning Man or other areas around the Country to set up Mobile HPPD research/information centers.). I have a verified Youtube Channel. I will be making use of this wonderful way of sending messages. I will also be working with other non-profit for projects with HPPD. Best wishes! David
  9. I'm going to address this in a post, but I do want to say that I need you need to read for my answer (It will take me a little bit of time tonight to write, and I need to read a few things on the board afterwards before I release a video, but I am excited.
  10. As, GS stated above and to further add that visual processing goes through multiple stages. The retina is the only part of your brain that you can see. Also, the retinal cells work backwards and are constantly firing and stop firing when activated by a photon. Just adding my two cents that case studies are the lowest form of convincing research publications. They are helpful and can inform further ideas for controlled research.
  11. 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.
  12. I had a serious leg injury and was on 10mg Oxycontin every 4-6 hours plus Morphine IV prn. I was fine. Honestly, I take Excedrine for headaches. Excedrine would stop headaches caused from MDMA abuse, Opiate induced headaches, Alcohol Hangover, Tension Headaches and Migraine. I know and worked with sufferers of Cluster Headache. One of the substances that is added to a compound thay works is Caffeine. Excedrine has Aspirin, Acetaminophen and Caffeine. It is more effective than Morphine for headaches for me.
  13. INTRODUCTION TO PHARMOKINETICS (With Specifics for the United States FDA rules and regulations) The half-life of Klonopin averages 40hrs. So, on day 4 you still have 50% of the dose you took 2 days prior in your system. 80% of the day prior. The value obtained with humans for available active clonazepam is a 3.3 fold increase from your daily dose. So, if you are taking 1mg/daily you achieve a steady state dose of 3.30mg. If you are taking 4mg/daily you reach 13.2mg. If you are taking .5mg a day, the steady dose = 1.65mg I created a calculator you can enter in a dose and it will calculate your body dose equivalency for 7 days. It is a google doc, I am pretty sure I locked the formulas, so only change the one value and press enter and it will change automatically for you. https://docs.google.com/spreadsheets/d/1EjTl8-ldbA_ZVaAgwrzjT613wKl3jAZxha2muLlkl8U/edit?usp=sharing Another very simple way to achieve the same thing is to take your daily dose and multiply by 3.3 or even more quickly by 3. This is a quick way to see why recommendations are for lower dose ranges. Dose Daily Effective Dose Potency at 7 Days 0.25 0.83 0.5 1.65 0.75 2.58 1 3.3 1.5 4.95 2 6.6 2.5 8.25 3 9.9 3.5 11.55 4 13.2 6 19.8 10 33 15 49.5 20 66 Typically, these are measured in nanograms per milliliter. This is only for clonazepam, and the half-life of a 2mg dose in a 2003 study was approximately 39 hour +/- 9 hours. Use of antacids can affect this number, liver function, kidney function and food. The average difference in C(max) and AUC between generic and innovator products was 4.35% and 3.56%, respectively. In addition, in nearly 98% of the bioequivalence studies conducted during this period, the generic product AUC differed from that of the innovator product by less than 10%. It also explains why having a day or so lapses in a Klonopin script are infinitely easier to handle than a Xanax script. Because the drop in concentration takes the same reduction, but Xanax half life is 11.2 hours. Klonopin Dose Calculations (Rough Estimations) I would discuss these with your doctor, and I also call them rough because other medications can potentiate the level or medications or supplements may occupy the enzyme in the liver that break down Klonopin, so it stays in the system longer. There are many variables, but this is a good general demonstration. .
  14. 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
  15. There is news. I can't explain yet, but in short, my biggest barrier to work no longer is an issue. I will have a re-introduction post, I will cover some of that there. I have a plan. This is an image of the message board for HPPD that I was running on a server and we were pretty active.
  16. Sadly, to be honest, I am in the same position looking for a position as a research assistant.
  17. NODID.org is now back in my hands. It means very little in the big picture, but a small celebration. I registered NODID.ORG when we formed the National Organization for Drug-induced Disorders, Inc., a 501(c)(3) non-profit public charity. I lost the domain name, which suddenly jumped to $600 and was owned by various other groups. NODID, the organization is no longer active, but I have accounts that use dkozin@nodid.org as an e-mail back-up that should allow me to enter places to enter other sites. Admins: E-mail david.s.kozin@gmail.com with any financial issues and current SITREP. I contacted some of the larger sites to fix their links, which explains some drain on the the site, and I may have a donor that will pay for hosting. I am having a significant family issue that may result in a slow response, but much more quickly than never. If you are interested in learning about the history of the hppdonline.com web site, you can go to wayback machine and look at nodid.org and hppdonline.com and see what I was working on at different stages and can get some interesting information. Here are images from the history of HPPDonline and one from NODID. The oldest record in 1991. - David
  18. I remember feeling so protective about the HPPD community (I was married to one) that if someone pointed out ignorant comments referring to us as malingers and faking the symptoms for different reasons. My favorite were provided on a few occasions when people claimed that Dr. Abraham and DEA created HPPD as a lie and eventually I knew I was doing something right too when I was named as a co-conspirator. Usually, it was a pretty rational person selectively processing facts and emotions and they are very hard to discredit because they feel they would be aware of this disorder if it existed. I argued with a professor from Germany who read almost all of the material on LSD that one would ever need to, and for years on the Internet in email, he would only give me credit for being so open to alternative explanations. I later met the researcher who still would not believe me 100%, but he said that my willingness to identify alternatives but state something you can't deny: "Well, we have web stats that prove at least there is a trend worth considering." He later published a case report of an individual getting HPPD after mushrooms or MDMA. I used to spar against a pro-drug advocate long ago on his website after a rather in-your-face member of HPPDonline.com would return back telling me all of the lies this person is saying and what he is calling us. So, I would write in his territory (mid/early 2000's maybe?) on his site. and I used the same honest answers and stated that I do not have an answer to many of the common questions about the definitions of a disorder, but he disliked that I could attack his logical fallacies in not considering HPPD to be possible, This was occurring on his web site's personal forum. A year or so later, a lot of things changed in the HPPD landscape (I was designing my first research experiment with Dr. Simeon) and I was drawn into another chance to go spar with his anti-HPPD crap because his followers were getting bad information. He did piss me off because, well to be honest, we were both punks with a sense of self-righteousness for our stance, but I think I had a better one. However, I just agreed with him that his points could be valid in his perceptual reality, and I understood he would feel these things and was happy that he did not have to know HPPD. Then slander, but I ignored it. However, interesting that it was almost 15 years ago and I am writing about it and can remember it. I can tell you that the most HPPD friendly researcher in this community didn't know HPPD existed and was shocked to see how much literature existed, then people in the comment section will not either. I realized it was a waste of my time and I should focus on the bigger issues. In the end, I can find references to this user only on user reports from 2000-2007 on Erowid.org and his personal site is defunct. The Erowids are very supportive. This young guy annoyed me, and when I let it go I made friends with the people on that side who were open to or completely accepted HPPD as reality. I am removing excess to start over to deal with the things that do matter. That guy must have moved on or in prison or maybe here, but I know that his followers were going to do whatever they were going to do, and the other member talking about their HPPD was just as effective as me. t didn't matter what they said because I remember telling my friend during the a 7th hour of an LSD trip, "Wouldn't it be awesome if you just saw the world like this, but were not tripping?" It was only a month or so until my HPPD started. The Universe wasn't going to be subtle. I include on my Google + page the response to what my bragging rights could be for: Dr. James Faddiman asked me (unsolicited) to be his LinkedIn pal and when I asked him why me? He said, "I am a serious admirer of your work." If a pro-psychadelic member of a site heard that was true, then if the are educated psychonauts they would hear the mic just drop. Thanks for letting me steal your thread. - dk (I don't edit my posts before clicking send because I have a million things going on in my head, and I am usually hitting "send" because I get a reminder how late it is. ) Ut us 3:23 AM, and I have stuff to sell online and get real sleep. But, I spent a few hours looking at the analytics from this site over the last few years (I do have it, the comprehensive ones), and my mind was racing. I'll try to focus writing earlier, so I can check it over to create sentences and stucture that form a cohesive unit linked to the sentences around it. )
  19. What we've got here is a failure to communicate. 

  20. HONOLULU -- Psychiatric visits by the elderly to this city's largest emergency department have increased significantly in the past four years, perhaps signaling the onset of a long-predicted crisis in geriatric mental health, a researcher said. View the full article
  21. Dear Community, The initial results are public. Dr. Abraham presented the report at the Annual Meeting of the Biological Psychiatry Society earlier this year. I have included a copy of the Abstract in this post and providing a link to Dr. Abraham's additional discussion and graphs at the bottom. My emphasis added, but to restate Dr. Abraham's website: "This study is NOT the gold standard of proof that this approach works. . .These medications are not approved for use in HPPD. Any interest in them should be discussed with your physician." I know we have discussed COMT, genetic variations and watched the board's discussion move from the serotonin system to the dopaminergic system having originally focused on the GABAergic system. These are not systems locked in single compartments, single receptors and single cell types, but have complex interactions and as you are aware we are just touching the surface of Neural Science and Behavior/Perception. However, the basic discussion was on target: Dr. Abraham hypothesized that inhibition of COMT would reduce symptoms in HPPD. Consequently, COMT inhibitors were tolcapone and Sinemet Again, these are not approved for HPPD and should only be tried with a clinician. Here is the abstract from the conference: Catechol-O-Methyl Tranferase Inhibition Reduces Symptoms of Hallucinogen Persisting Perception Disorder Henry D. Abraham, Psychiatry, Tufts University, Boston, MA Background: Hallucinogen persisting perception disorder (HPPD) is a poorly understood disorder arising from the use of hallucinogens. It is characterized by continuous visual disturbances which can be lifelong. There is no known treatment. Studies of HPPD patients with qEEG mapping show that the disorder is represented by disinhibition in the cerebral cortex. Inhibition of catechol-O-methyl transferase (COMT) increases inhibition of sensory input in humans carrying the G/G polymorphism. Accordingly, I hypothesized that inhibition of COMT would reduce symptoms in HPPD. Methods: A single-dose, open label trial of a tolcapone, carbidopa, and L-dopa was conducted in 17 consecutive HPPD subjects. Visual symptoms in each subject were coded on a 0 to 7 Likert scale before, and two hours after, drug administration. A paired Student t-test was used to determine statistical significance. Results: The mean pre-drug visual symptom score for the entire sample was 4.7 +/- 2.6, compared to the post-drug score of 3.7 +/- 2.8 (P= .001). A post hoc median split of the percent response of each subject was 51% symptom reduction in the upper half of responders compared to 1% in the lower half, suggesting a bimodal sample. Conclusions: Inhibition of COMT is a novel approach in the treatment of HPPD. The bimodal treatment response is consistent with the action of a functional polymorphism in the COMT gene. Future directions include a double blind, placebo controlled trial of this treatment and a determination of COMT polymorphism in responders and non-responders. Keyword(s): HPPD, COMT, tolcapone, carbidopa, DOPA (Retrieved from Convention eBook downloaded from: http://www.sobp.org/...?pageid=345267; Kindle Locations 21096-21098. SOBP. Kindle Edition.) LINK TO Dr. Abraham's Web Page regarding this study: http://amrglobal.pow...atment-for-hppd Best wishes, - David Kozin
  22. Recently, I had a very severe injury to my leg resulting in total absence from social media or work for a long time. Afterwards, I had to take what small positions I could to stay afloat. I have decided to make a commitment, for about as much time as it would take me to find some work, to make the new HPPD Initiative and Research plans my work. Dr. Abraham has conducted the majority, if not all, of his research regarding HPPD without any funding. They spawned off of other work where essentially the insurance companies are paying for the tests and he is reading the results. However, he does invest his own time and money and really deserves a lot of respect. Without him, I am sure HPPD would not exist in the DSM-5, and you would all be on the visual snow board where prejudice for your drug use would be a cause of fights and we may still be a myth. PROBLEM 1: The problem is that we do not have any EPIDEMIOLOGICAL DATA to present the groups that make decisions about grants. WHY?: Without data on how many people actually have HPPD, we can neither apply for special grants for very rare (orphan diseases) nor can we show that the problem is much bigger than they think. We need point prevalence data. I have designed the new system that involves a membership system serves as a good indicator for an individual to really belong in the HPPD population. If a $20 dollar a year membership was required to access all of the web site's features and money that pays for printed literature/etc (just hypothetical number) was paid by 10,000 people -- this is the number of people that I can guarantee by studying analytics from Google and server tracking -- many who do not register but visit regularly paid 20 dollars a year we would have 200,000 dollars for research, web site, expenses, etc. Wow, that is a lot. But it can be done. Now, each registered member is verified as a person with an address and name. I can have each complete my comprehensive survey about HPPD, which Dr. Abraham approved after some fixes. Now, I have maybe 7,000 people who took the survey from all around the world. Now, we have a major paper and would warrant larger research because misdiagnosis of false negatives can be shown to be common and a number of people with HPPD could be predicted from the error rate of diagnosis. Do you want to get research organized? Then we must organize as a unit, create the petitions and connect with the institutions and act as a lobbying group essentially for our disorder. This is a model that works, and the research I suggested Dr. Simeon and I work on ended up showing a population of 360+ people stating to have DP/DR took an important test and the results from the internet group were ALMOST exactly on the numbers of people who take it in person after a diagnosis. This was huge, as it validated our large sample for other reasons. It was the nail in the coffin for changing that diagnosis and to this day my proudest work. I am going to continue to work on the basic set-up of the new web site and accept people willing to craft it and how the entity works. So, this is what a membership could get a person at the "Regular [Full] Member" 1) User profile that can be public or hidden 2) A blog to tell their story as they chose 3) Access to all of the literature in a virtual library, access to online systems that the memberships could pay for. 4) Set-up text or e-mail message reminders if someone is setting up a meet-up within X kilometers from your home. 5) Receive text message if a doctor near your area has taken the pledge that HPPD is a disorder of the brain, has committed to reading the literature and as a result signs their virtual name to the web site and their office location is placed on the map. The system will look for people within a radius and alert them about the doctor. 6) Access to all of the authors stories, ability to comment, create your own meet-ups 7) Organize events, participate in seminars and receive discounts we use our size to procure. 8) Receive alerts to nearby research and contact information. Additionally, it would carry over and pay for this web site and then the work done for the printed material for all members and for the professional information web site. Is that worth the cost of a cheap American fast food combo meal once a month? If so, then it is worth $60 USD. If 5,000 members paid $60 we would have 300,000 dollars a year. We would have researchers drooling for that type of money if it was guaranteed. It is so simple for us to really take this and do it if everyone realizes how a small contribution, set up regularly and with many volunteers working and targeting the rights areas to request for grant providing money. Essentially, we all would be paying a premium on services to pay for grants to researchers and in that WE ALL OWN AND SHOULD TAKE VALUE IN THE RESEARCH. It is a co-op that hires a research team. If we have 100,000 dollars I am almost certain the donor group from the HPPD Foundation will feel this is a measure that it is worth it for them to make the financial contribution of an equal amount towards research and double the money. How close are we? As close as the desire of the people who decide what they value. Do you value that type of money that would allow us to have researchers begging for us or where we are begging to them because we all said we can not give up one hamburger and fries a month. Here are the site statistics, we have the ability to harness this power: Analytics www.hppdonline.com Acquisition Overview 20140101-20140410.pdf Analytics www.hppdonline.com Audience Overview 20140101-20140228 (1).pdf Analytics www.hppdonline.com Location 20140101-20140410 (1).pdf https___www.invisionpower.com_clients_index.pdf
  23. The creators of the forum software have released a very nice iPhone Application that will bring DPSelfhelp.com to your fingertips on the go! Check it out here: http://itunes.apple....d372597645?mt=8
  24. Dear Community, I want to first say that I am not connected with the current medication trial for HPPD or related disorders. However, I am aware that Dr. Abraham is open to talk to anyone willing to come to Boston for a proper evaluation and possible medication trial. In the interest of protecting the most vulnerable of our population, we should be careful when discussing the medication(s) used because this is something that should not be done alone or without proper consultation. It could harm a member of the community and also the future of research. If you are interested in receiving information on traveling to Boston and would like to meet with Dr. Abraham for consultation and discuss participation in a possible medication trial you can contact me at Either by Phone: (617) 858-0279 10AM - 10 PM EST. The phone will also ring my house phone and cell. You can leave a message with family with username and phone number. I can receive texts, but please include your username and name to help aid me. Or by e-mail: hppd@me.com I am not a screener for the research, but I can be helpful in discussing travel and contacting Dr. Abraham. I do not believe a flood of requests to Dr. Abraham would be helpful, and we should have individuals with HPPD who are serious and able to be part of this first stage to contact Dr. Abraham and I can send along any information at your request and provide you with the best method to contact Dr. Abraham at the time. Sincerely, David
  25. I wrote this a stream of thoughts. It will be disorganized, but it would never happen if I didn't do it this way. At least, it would not happen now. It is important I get it out, and that you realize the sentences may be inverted or a section missed and picked up. I did not go back to edit it, and you will understand why. I am David Kozin, and I want to let something go so I can succeed. If I do not work on this every day, I will never reach my potential and remain in hiding. Writing this may or may not be a good idea, but so far not saying anything causes me hours of stress each day that incapicitates me so much that I won't turn on a computer or leave the house because the anxiety is so high. I am sure what I am going to say is not a surprise to some of you. However, I feel it is very important to mention and to discuss it publicly because I have reached the point where I am dedicating as much energy to managing my symptoms as I once did to HPPD. I have ADHD. Unfortunately, it is sad that I must validate myself more than this, but the overdiagnosis of ADHD and lack of understanding of the disorder warrants it. Additionally, if you only see my history as bullet points in terms of my few but notable accomplishment you will think I am joking. If you have been with me since 1998 on this or one of the previous versions of the message board, it will make sense and purhaps you knew I had it before I did. Let me start the validation. Without hesitation, I can say that ADHD has been the most debilitating disorder in my life. Attention disorders are associated with HPPD, but my ADHD began as early as I can remember. I always knew something was wrong, but until extensive testing, the results of my qEEG re-examined and an honest look at my life with family and friends did I know exactly what it was. I am deciding to talk about it because I have added an additional handicap to my success and with being fair to this community and my self but not talking about it and letting the problems associated with it pile up until I had to face it seriously or I would probably be in a much worse place right now. In 1998, Dr. Abraham sent me to Dr. Frank Duffy for a Quantitative EEG (qEEG). The finding on my study was very unusual, but we didn't look at it as diagnosing any other disorder other than HPPD and to rule out other disorders that can cause visual symptoms. WHAT IT SHOWS from my report: "Sprectral data are surprisingly abnormal with consistently excessive fronto-central theta. In comparison to an age appropriate normal database theta is increased by 3.49 SD broadly in the frontal and central regions without asymmetry. n comparison to an age appropriate normal database, Theta is increased by 2.56 SD bilaterally in the fronto-central region with no asymmetry. The front theta raises the possibility of a mild encephalopathic process as well." WHY THESE ARE VERY ABNORMAL RESULTS: THETA IN FRONT CENTRAL AREA IN EXCESS WOULD HAVE PREDICTED WITH 95% CONFIDENCE ADHD DIAGNOSIS "After a very consistent and growing body of evidence, The FDA approved qEEG for testing ADHD along with clinical evaluations. It is the best marker that I can use to "prove" ADHD just like we use it to prove our HPPD. " "Current research findings suggest that most children with ADHD display fairly consistent EEG differences in brain electrical activity as compared to normal children, particularly with respect to their increased frontocentral theta (4-7 Hz) activity during primarily resting state conditions. " "A recent meta-analysis of 9 studies with a collective sample of 1,498 subjects found an effect size (ES) of 1.31 (95 % confidence interval [CI], 1.14-1.48) and an average excess of 32 % in theta band power for children with ADHD relative to controls" ALSO: I was sent for a 6-hour neurocognitive evaluation at University of Michigan. The results demonstrated expected measures in areas except attention. I scored in the 5th grade level for writing an essay with handwriting. Measures of attention scored in the severely imparied range and in the 4% for ADHD. The first book I completed (Read from start to finish in any manner of time) was in 2009 after starting medication and work with a learning specialist and counselor. My symptoms have created extreme levels of chaos in my life, and I consistently underperformed in academics except in the intense cases of hyperfocus on areas. I was the highest scoring student in math in an 8th grade evaluation, but never received a grade higher than C despite my love of math. The process of working "through" problems sets quite literally makes me so anxious that if asked would I rather work through a 100 question basic multiplication paper and do the problems in order (example: 3 x 32 =) for a Class Grade or just receive a C+ and not do the test... I would feel less anxious about an automatic C+ than going through the process of working 100 problems, despite my ability to do them. I almost did not graduate high school because I received a D- in American History (the most basic course that ALL students pass based on an elementary knowledge of the topic [e.g. What are the three branches of government?]. I also received a D- grade in mandatory Home Economics. The balancing of a check-book, budgeting and how interest is calculated. Yet, I was voted the National Honor Society President of my class. I had the raw skills and ability to hyperfocus on a new and exciting topic for a day that to save myself from failing a Math course in 1991 I took one day too learn the C language with a computer to write a program to use logic for diagnosis infectious diseases based on Y or N questions from a book. A full 20 pages of single spaced code. After that, my interest in programming was challenged because for some reason (I just can't explain it) I was UNABLE to move forward with learning programming and reading books on the topic. I wrote the software for the Depersonalization research in 2 days on self-medicated (without doctor approval) Adderral learning PHP and writing an extensive database application to pass approval of Mount Sinai School of Medicine's IRB. It worked. I have over 10,000 unread e-mails, mostly information e-mails, but the level of panic when I try to address this is overwhelming despite knowing that not reading the e-mails would be worse. I have over-drawn checking accounts for about a total of $30 x 100 = $3000 dollars in charges and five closed bank accounts. What is most important, is that just as much as people are unable to comprehend seeing what we do or how a person so underweight that they risk heart failure yet consider themselves fat or why a person with OCD must go through a routine with no basis in reality or logic and despite them knowing this to be true... they still have to do it or the anxiety and feeling inside is so distressing that it impairs life. Nobody wants to operate like this. I didn't want to fail out of two colleges. I didn't want to not answer e-mails. I didn't want to pay $3,000 for maybe 500 dollars of items. I never wanted to miss doctor appointments, meetings with anyone, classes including when the Final Exam would be. ADHD was not understood or on the minds of teachers during my educational development. I was called lazy, self-endulgent and my parents would punish me and judge me for not completing a basic chore or remembering a time. Never, did I get in trouble or disciplined for an action where I flagrantly attempted to make another person's life more difficult or harm or do harm to anyone. I was the gold star behavior student, but I would have teacher's in tears yelling at me for not completing assignments that they knew "I could do." Well, at the same time my self-esteem was destroyed at its heart. It has been for so long. Having started this message board and knowing it has helped so many is the only comfort I have when I start to think that my life has been pointless. I have been without health insurance for three years and living a chaotic life during them. I ended up in Iceland in a tent for 3 months, which was an amazing experience but everything I intended to do never materialized. I have yet to finish even a computer game to completion, but like Flight Simulators or a game with a 10-minute goal to win or lose. I master skills to create something, but implementing them is where I struggle every day. Every day, I punish myself further and finally had to be very forward with people about my condition and my attempts to work on them behaviorally in an intensive way and also with medication. I recently decided to reduce my klonopin dose, which cascaded into a disaster of monthly withdrawls, days where I would fear opening my computer because hearing the sounds of the emails that are there would bring me to a full panic. I have 30 phone calls I have not answered, but would love to, but fear that my delay in actions or missed appointments would be on the other end. Yet, I can't go foward with what I know I can do, what I have already done that to a normal person would be completed in a few days. I have a research study for Characterizing all of the vision disorders that was approved by Harvard's IRB, and not executed for different reasons, and it would help so many to be used but putting it in a program desite the benefits even I would selfishly get still make it a challenge. It took me 7 months, two of those months consisted mostly of anxiety over writing my HPPD story for a major British Journal. My girlfriend at the time was very understanding, but I could see how it upset her to see me struggle over something that I literally completed in less than 30 minutes when I was asked to do it against after I passed my deadline and removed myself from a short description of my HPPD. So much wasted time worrying and the anxiety over such small tasks that I can do, but just need to work with professionals and friends and family, but most importantly myself to find ways to work and live up to my potential. I have done it once, when I began medication and had a four person professional support group at college that let me read my first book and worked around my challenges, learnined cognitve ways to get past issues and have students actually say they wish they had my work ethic, which is a statement that brought me to tears when I first heard it. So, I have 10k emails. I am going to have someone assist me on deleting the mass of it (anything from companies/etc) and to reduce it down to about 5 emails that are really important. I am going to ask for help to put the survey together with Limesurvey for us to get it ready. I have put together so many articles on volunteer management, the laws both domestic and internation, to the point of nausea including having the system to let people volunteer even if as simple as saying, "Hey You, could you take my 130 article database of HPPD papers already in a word document and look for new ones on medline and post them?" I now have Medicaid because of an extension and because of "Obamacare" it comes with a health plan like everyone else and it begin the first of next month. Specialists in ADHD advised I would qualify for Social Security Disability, but I know when I had the write treatments and if I can just delete this garbage without fear and simplify life that I can excel for sustained times with medication and a lot of effort on the skills and letting others help me. I am going to send this out, and ask nothing from anyone but help explain my biggest challenge and that an unanswered email was not because I did not care and in order to move forward I will need to set aside the massive amount of data and thousands of files in folders lost to me and reduce to the basic goal right now of a executing all of the things I have learned and prepared for to let others join in making the Society of Perception Disorders a reality and not fear help and let others decide how they will judge or perceive me. Thanks for reading this far, I could not have done it. I started writing this at 11:30 and now I am sending it. I am returning to my normal klonopin dose, because this increased anxiety is unmanagable and a horrible decision that I made to do at this point (reduce from 3mg to 2mg) which I have tried off and on and i have been taking 3-4mg of Klonpin daily since 1998. This is not the time to stop. I will be in a few day radio silence, but will contact key individuals that I have promised to be in touch with and move forward. Sincerely, David Kozin Here is my internet browsing history during that time: 2:26 PM theta power adhd severity - Google Search www.google.com 2:26 PM theta power adhd severity - Google Search www.google.com 2:06 PM file:///Users/thunderbolth/Downloads/d912f50858005f3c01.pdf file: 2:06 PM A meta-analysis of quantitative EEG power associated with attention-deficit hyperactivity disorder. - Google Search www.google.com 2:05 PM A meta-analysis of quantitative EEG powe... [J Clin Neurophysiol. 2006] - PubMed - NCBI www.ncbi.nlm.nih.gov 2:05 PM Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update www.ncbi.nlm.nih.gov 2:02 PM Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update www.ncbi.nlm.nih.gov 2:01 PM Clinical utility of EEG in attention-defic... [Neurotherapeutics. 2012] - PubMed - NCBI www.ncbi.nlm.nih.gov 2:01 PM Specificity of quantitative EEG analysis in a... [Psychiatry Res. 2002] - PubMed - NCBI www.ncbi.nlm.nih.gov 2:00 PM Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update www.ncbi.nlm.nih.gov 1:58 PM theta eeg Standard deviation to be significant - Google Search www.google.com 1:58 PM theta eeg Standard deviation to be significant - Google Search www.google.com 1:58 PM Understanding Brainwaves | Center for Attention Deficit and Learning Disorders centerforadd-az.com 1:58 PM Understanding qEEG Brain Mapping | Center for Attention Deficit and Learning Disorders centerforadd-az.com 1:58 PM ADD and ADHD in Adults | Center for Attention Deficit and Learning Disorders centerforadd-az.com 1:57 PM ADD/ADHD Explained by Dr. Silverman | Center for Attention Deficit and Learning Disorders centerforadd-az.com 1:55 PM theta eeg Standard deviation to be significant - Google Search www.google.com 1:54 PM Case Studies in Applied Psychophysiology: Neurofeedback and Biofeedback ... - Google Books books.google.com 1:54 PM theta eeg Standard deviation - Google Search www.google.com 1:54 PM theta eeg Standard deviation - Google Search www.google.com 1:54 PM Variability of EEG Theta Power Modulation in Type 1 Diabetics Increases during Hypo-glycaemia - Springer link.springer.com 1:54 PM http://link.springer.com/chapter/10.1007%2F978-3-319-00846-2_133#page-1 link.springer.com 1:53 PM theta eeg SD - Google Search www.google.com 1:52 PM Introduction to Quantitative EEG and Neurofeedback: Advanced Theory and ... - Google Books books.google.com 1:52 PM http://books.google.com/books?id=PigKJuOSvbMC&pg=PA124&lpg=PA124&dq=theta+eeg+Standard+deviation&source=bl&ots=Ah4cIsVJEl&sig=qPdTTyL94Jahre-dFHl2crca-I8&hl=en&sa=X&ei=ndGhU6uhBufL8wHWqYHoCA&ved=0CDoQ6AEwBQ books.google.com 1:51 PM Lab #9 Quiz flashcards | Quizlet quizlet.com 1:50 PM theta eeg SD - Google Search www.google.com 1:50 PM http://journals.psychiatryonline.org/data/Journals/AJP/3732/109.pdf journals.psychiatryonline.org 1:46 PM http://cdn.intechopen.com/pdfs-wm/40099.pdf cdn.intechopen.com 1:46 PM theta eeg SD - Google Search www.google.com 1:45 PM theta eeg SD - Google Search www.google.com 1:43 PM theta eeg SD - Google Search www.google.com 1:43 PM theta eeg - Google Search www.google.com 1:35 PM Daubert and Frye Admissibility of QEEG www.appliedneuroscience.com 1:35 PM theta eeg SD chart - Google Search www.google.com 1:34 PM https://www.google.com/search?q=theta+eeg&es_sm=91&source=lnms&tbm=isch&sa=X&ei=Qs2hU_HWO82UyASSo4DICQ&sqi=2&ved=0CAYQ_AUoAQ&biw=1157&bih=603#q=theta+eeg+SD+chart&tbm=isch&facrc=_&imgdii=_&imgrc=tffD2T0wJc9v0M%253A%3BTjZUAIJzXvDHtM%3Bhttp%253A%252F%252Fwww.plosone.org%252Farticle%252Finfo%253Adoi%252F10.1371%252Fjournal.pone.0034789.t006%252Flargerimage%3Bhttp%253A%252F%252Fwww.plosone.org%252Farticle%252Finfo%25253Adoi%25252F10.1371%25252Fjournal.pone.0034789%3B1964%3B1610 www.google.com 1:34 PM theta eeg SD chart standard - Google Search www.google.com 1:34 PM https://www.google.com/search?q=theta+eeg&es_sm=91&source=lnms&tbm=isch&sa=X&ei=Qs2hU_HWO82UyASSo4DICQ&sqi=2&ved=0CAYQ_AUoAQ&biw=1157&bih=603#q=theta+eeg+SD+chart+standard&tbm=isch&facrc=_&imgdii=_&imgrc=HQEd9az8lVM4WM%253A%3BWqiw9F-Z5cFRBM%3Bhttp%253A%252F%252Fjn.physiology.org%252Fcontent%252Fjn%252F104%252F3%252F1825%252FF5.large.jpg%3Bhttp%253A%252F%252Fjn.physiology.org%252Fcontent%252F104%252F3%252F1825%3B896%3B1280 www.google.com 1:34 PM theta eeg SD chart standard - Google Search www.google.com 1:33 PM theta eeg SD - Google Search www.google.com 1:32 PM theta eeg SD - Google Search www.google.com 1:32 PM theta eeg SD - Google Search www.google.com 1:32 PM theta eeg SD - Google Search www.google.com 1:32 PM theta eeg - Google Search www.google.com 1:32 PM theta eeg - Google Search www.google.com 1:32 PM Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Google Search www.google.com 1:30 PM http://www.noropsikiyatriarsivi.com/sayilar/382/buyuk/19-27.pdf www.noropsikiyatriarsivi.com 1:29 PM Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Psychiatry Research www.psy-journal.com 1:29 PM Redirecting linkinghub.elsevier.com 1:27 PM consistently excessive fronto-central theta - Google Search www.google.com 1:27 PM onsistently excessive fronto-central theta - Google Search www.google.com 1:27 PM http://books.google.com/books?id=w1YrFypvmn8C&pg=PA391&lpg=PA391&dq=consistently+excessive+fronto-central+theta&source=bl&ots=J-lS9YZBxY&sig=RpviaDPTvwEcLPb542XUwcZuqOQ&hl=en&sa=X&ei=EcuhU8nXKseLyASfuIGYBg&ved=0CE8Q6AEwBw#v=onepage&q=consistently%20excessive%20fronto-central%20theta&f=false books.google.com 1:26 PM Handbook of Clinical Child Neuropsychology - Cecil Reynolds, Elaine Fletcher-Janzen - Google Books books.google.com 1:23 PM ADHD www.qeeg.com 1:23 PM consistently excessive fronto-central theta - Google Search www.google.com 1:23 PM Depressie www.brainclinics.com 1:21 PM ADHD www.brainclinics.com 1:21 PM ADHD www.brainclinics.com 1:06 PM QEEG and EEG Biofeedback Fact Sheet www.qeeg.com 1:06 PM https://www.google.com/search?q=theta+Standard+deviation&oq=theta+Standard+deviation&aqs=chrome..69i57j0.10915j0j4&sourceid=chrome&es_sm=91&ie=UTF-8#q=theta+Standard+deviation+eeg+database www.google.com 1:06 PM theta Standard deviation - Google Search www.google.com 1:04 PM Behavioral and Brain Functions | Full text | On the analysis of EEG power, frequency and asymmetry in Parkinson’s disease during emotion processing www.behavioralandbrainfunctions.com 1:04 PM fronto-central theta SD eeg - Google Search www.google.com 1:03 PM fronto-central theta SD eeg - Google Search www.google.com 1:03 PM fronto-central theta SD qeeg - Google Search www.google.com 1:03 PM Theta rhythm - Wikipedia, the free encyclopedia en.wikipedia.org 1:03 PM Theta rhythm - Wikipedia, the free encyclopedia en.wikipedia.org 1:00 PM Electroencephalography - Wikipedia, the free encyclopedia en.wikipedia.org 12:58 PM Electroencephalogram (EEG) | Johns Hopkins Medicine Health Library www.hopkinsmedicine.org 12:58 PM anesthetic_theta www.stanford.edu 12:48 PM http://sccn.ucsd.edu/~scott/pdf/LooMakeig_Neurotherapeutics12_share.pdf sccn.ucsd.edu 12:48 PM qeeg adhdh - Google Search www.google.com 12:48 PM New EEG Based Test Helps Diagnose ADHD with Greater Confidence www.medgadget.com 12:48 PM Press Announcements > FDA permits marketing of first brain wave test to help assess children and teens for ADHD www.fda.gov 12:48 PM CDC - Attention Deficit Hyperactivity Disorders (ADHD) Homepage - NCBDDD www.cdc.gov 12:48 PM CDC - ADHD, Research - NCBDDD www.cdc.gov 12:48 PM CDC - ADHD, Symptoms and Diagnosis - NCBDDD www.cdc.gov 12:47 PM CDC - ADHD, Articles - NCBDDD www.cdc.gov 12:47 PM CDC - NCBDDD Publications Home www2.cdc.gov 12:47 PM Search Results: adhd qeeg www.cdc.gov 12:11 PM http://www.bcbsnc.com/assets/services/public/pdfs/medicalpolicy/quantitative_electroencephalography_as_a_diagnostic_aid_for_ADHD.pdf www.bcbsnc.com 12:10 PM Neuropsychiatric EEG-Based Assessment Aid (NEBA) System - Google Search www.google.com 11:32 AM Lifting the Fog: A specific guide to inattentive ADHD in adults www.scribd.com 11:31 AM Scribd www.scribd.com 11:24 AM Google www.google.com Yesterday - Tuesday, June 17, 2014