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  1. SaraSara

    Important Research News !

    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 !!!
    5 Points
  2. Jay1

    Pre hppd

    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.
    3 Points
  3. Ghormeh Sabzi

    In the news

    There's absolutely no reason to be so aggressive and rude. You have a history of it on here, but that's not what this forum is about. If you have a particular opinion, fine, but there's a way of expressing yourself and that's not it. Furthermore, a failure to understand the importance of this study is a failure to understand the scientific process. It is not as simplistic as you make out. I suspect you haven't even read the study, merely the media headline. Science doesn't work by people saying 'based on my experience with LSD, it induces a higher state of consciousness'. No study has ever previously directly demonstrated a 'higher level of consciousness', and indeed the present study also focuses on how this higher level occurs in the psychedelic state. Using one particular scale, they were able to show that if, for example, being asleep is a lowered state of consciousness; being awake is a normal state of consciousness - then based on their measure of brain activity in scans, the psychedelic state is a higher level of consciousness. When we are under anaesthesia / vegetative, our brain signal is relatively most predictable; when we are asleep, our brain signal is relatively less predictable; when we are awake it is even less predictable; and when in the psychedelic state it is least predictable. This holds true for psychedelic states induced by psilocybin, ketamine and LSD - and based on their differing pharmacology, ketamine in particular, it is somewhat surprising they correspond to the same mathematical measure. We still don't understand what consciousness truly is, and this study clearly will aid in that understanding. This study shows that the psychedelic state is a distinct state of consciousness, as is being awake or being asleep, because of the global changes in brain activity observed (i.e. not linked to a particular region e.g. the visual cortex). We did not know this previously. The study helps to quantify what is going on in the brain following intake of psychedelics, and this will help further our understanding of how these kinds of drugs can be therapeutically effective, and will aid progress in being able to use these drugs to treat mentally ill individuals.The study also helps us to understand the level of our consciousness and what we are conscious of. In the study, the greater the subjective psychedelic experience, the greater the observed change in the state of consciousness using their measure. Our awake conscious experience is probably only about 5% of what we are (the rest being subconscious), so them demonstrating an increase in that conscious experience is exciting (although the study needs to be replicated using other measures). Their stated intention is now to see how differing information flow in the psychedelic state leads to different psychedelic experiences e.g. hallucinations, something that's clearly going to be more of interest to our community. Overall, this study supplements our understanding of how hallucinogens work to produce the experiences that they do. I think it says something that this study has initiated significant excitement for world-leading researchers who work in the area of consciousness and/or psychedelics. I should also say that study used recycled data from the brain scans carried out by Dr Cahart-Harris, Prof Nutt, et al at Imperial. That study was crowdfunded with assistance from the Beckley Foundation, who some members on here were in contact with previously.
    3 Points
  4. Jay1

    I need answers

    I'd say you have what I refer to as pre-hppd... If you have to force it on, then it is in a mild form and will very likely go completely if you stay sober, get healthy, eat well etc. At the very worst, you will just stop looking for it (I have a feeling alot of these visual issues were always there, we just filter them out perfectly, pre-drugs) I went through this stage and ignored it (this was before the internet!)... It can become hellish, but only by pouring fuel on the fire... No point getting stressed about it now though, I'd suggest not even bothering reading further until you try the sober/healthy approach and see what is really going on... but the most important thing is to stay sober. Your body/mind is ringing out alarm bells, you have to listen.
    3 Points
  5. K.B.Fante

    Constant open eye CEVs, panic, anxiety

    I was in a similar place as you for a long time. I remember when I first got HPPD it was like being transported into another world because my DP-DR symptoms were so severe. I literally thought I was dreaming this all at one point. Everything looked like a cartoon, people looked like they were sculpted from clay and my visual-spacial recognition system was so completely destroyed I couldn't move my eyes anywhere or track anything across my field of vision without a gigantic and long-lasting smear that persisted for sometimes minutes after I took my eyes away from it. I've made tremendous progress since that time and I attribute most all of it to abstaining from drugs and living a healthy lifestyle, especially with regards to eating habits. I don't know what to tell you other than you're not alone, many people here have suffered from intense HPPD and DP-DR and that 1.5 years is nothing in terms of recovering from HPPD. Also, I've been to so many dark places and thought I'd never make it out alive. I don't know how many times I've contemplated suicide, but I've always pulled through, always somehow found a way out and kept on pushing. After two years I'm so happy I did. Though I still have HPPD it's gotten so much better, especially after transforming my diet, and I'm finally in a place where I'm OK from day to day, which I never could say until now. HPPD is a very long road and a very strenuous fight, but as others have already pointed out life is worth living even if difficult. You just need to give yourself time.
    3 Points
  6. dukkha

    A small piece of heart advice

    Hi all, I haven't been on the boards in a year or three. I find that the less I think about HPPD the less it affects me. And, similarly, the more I'm on the boards, the more the conversations and discussions here loop through my head, and the more frequently HPPD dominates my thoughts. But today I decided to stop by. Why? I wanted to share a small piece of advice. Honestly, I had been thinking of doing this for a while but for some reason, it was so incredibly hard for me to open this forum and log in. Anyways, here I am now. What I want to share is what has worked for me and is what continues to help me. I speak to you from experience. I've found that the less I think of HPPD as a "thing" and the less that I see myself as a "victim" the less I suffer. What that means, is that the less you let this thing called "HPPD" be what identifies you, the less power it has to affect you. I know what this sounds like. It sounds like I'm saying "don't make a big deal out of it." And yes, that actually is what I'm basically saying. And I also know how most people are going to react. "It IS a big deal" or "that's f***ing easy for you to say" and so on. And you're right. HPPD is a big fucking deal and words come easy. However, I'm also a sufferer of HPPD and I know where you are coming from. Your symptoms may be far worse than mine. Or they might not. You don't really know. There are a lot of people suffering in the world. In fact, let me retract that statement--everyone in the world is suffering. You might not be able to perceive it, but there is a not a single breathing creature on this blue planet of ours that doesn't have a considerable dose of suffering. Some people's suffering has to worn on the outside. Do you think it's easy being physically deformed? Others, those like you and me, have to bear our suffering the inside. We may look "normal" and "just fine" to others in the street, or even to family and friends around us, but the amount of suffering we have inside of us is incredible. Indeed, it's mind boggling. And similarly, when we go out in the streets, on the subway, or for a drive and see all the other people going about their lives, you don't know--their suffering may be absolute nothing compared to yours. Or, it may not. Maybe you're is but a bit of spare change compared theirs. You just don't know. A person who has a toothache thinks that is theirs is the most painful type of suffering that can happen to you and the person who has a headache thinks that's theirs is the most painful type of suffering that can happen to you. That's whats called being human. We are all so incredibly self-centered and absorbed in ourselves. So naturally, us HPPDers think that HPPD is the most awful thing that can happen to someone. And maybe that's true. Or maybe it's not. All I know is that I wouldn't wish HPPD on even my worst enemy. But let me get back to my point about not letting HPPD become your identity. Once that happens, once HPPD becomes you and you become HPPD, it's over. Game over. You've started a cycle where you continually feed HPPD and it's ceaselessly grows in power over you. The more you think about it, the more it becomes real. The more you obsess over it, the most it becomes solid. Of course, it's hard not to think about it when the room is melting and and the anxiety feels like it literally about to give you a heart attack. But have you ever wondered why Xanax is so effective. I've noticed that after coming off a panic attack due to xanax my mind is completely clear, like a blue sky without a single cloud. The drug cuts through the snowball effect between the visuals and your anxious thoughts and suddenly you're back to neutral. And after pure hell, what a beautiful place that is to find yourself. And that is the state we have to cultivate. That is the state of mind that we have to start trying to inhabit if we want to live again. And that is where I am now, to be quite honest. I used to be in the deepest reaches of hell and thought I'd never come back. And I'm not cured today either. Hell no. HPPD visuals are always there and will always be there with me for the rest of my life. That is one thing I know for certain. However I consider myself cured because, except for the occasional anxiety attack, I can live and I can be happy. Of course, the visuals are always there if I chose to look for them. But for the most part, I don't pay them any mind. Sorry, visauls, but I'm not going to give you the time of day. So that is how I don't let myself become a HPPD victim. I don't let myself think that I'm the unluckiest person on earth who had to get this terrible disorder when all my friends didn't and still trip all the time. I just see myself as a average guy, just another human being, who happens to have screwy vision and anxiety. Nothing more. If you can start to think of yourself like that, that is exactly what you will become. Likewise, if you think about of yourself as the person on earth with the most suffering, that is EXACTLY what you will be. A guy who seems himself as just another fucked-up guy can go out in to the world. He may be a little awkward, but he can still enjoy the joys and sorrows of life. A guy who see himself as a HPPD Victim has to stay inside his tiny room and suffer as the walls close in upon him. So you have a choice. My choice, and my advice to you, is to not think of yourself as the worst, the unluckiest, or most miserable person out there--even if that is exactly how you feel. When you start to change your mind, you start to change your experience. And hey, you might not be at the bottom anyways. There are a million different ways we can suffer in this crazy world and HPPD is but just one of them. I've been on these boards for ... damn... is it almost eight years now? Maybe more. And there haven't been that many people who killed themselves or died. The only I can remember is Andy, the UK fellow who was a Buddhist. I'm sure there might have been more but compare that with the teenage girl who got blackmailed until her nude photos got leaked online and she committed suicide. Or the people recently in India who lost their life savings when the 500 and 1,000 rupee notes got canceled over night and their family founds them dead the next day. In fact, I have heard a lot more success stories on this board than deaths. So, please, all I want to say is be gentle with yourself. Everyone is suffering too so don't think you're so damn special for having HPPD. You don't know. Maybe one day you'll be like a lot of others on this board who are back to living again. Maybe not. But I think a lot of that depends on you. I'm sorry for my blabbering but this is what has made a serious, long-term improvement in my quality of life, more than drugs or anything else could. I felt terribly guilty not trying to at least say something that might even just help one person even in the tiniest way. I doubt that it has but still I'm glad I finally got up the confidence to log on today and write whatever came to mind. Feel free to take my advice but also feel free to call it bullshit and chuck it out as you see fit. That's all up to you and it honestly don't make one bit of difference to me what you do. You're the one who has to bear the results. I'll make my choices and bear their results. Anways, I'll be back in some time. Please know that I pray for each and every one of your on the boards daily. I'm not sure if helps relieve your suffering but its the best I can do. -Dukkha
    3 Points
  7. K.B.Fante

    Hello HPPD onilne !

    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.
    2 Points
  8. Jay1

    Need medicine but scared to worsen my pre hppd

    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.
    2 Points
  9. K.B.Fante

    Important Research News !

    Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:
    2 Points
  10. K.B.Fante

    Old article about the brain and LSD

    Was just browsing Google for LSD-related articles when I stumbled upon this from about five years ago: https://blogs.scientificamerican.com/scicurious-brain/httpblogsscientificamericancomscicurious-brain20110802sciam-chemistry-day-lsd-a-drug-only-as-good-as-its-receptors/ Pretty interesting summary of the brain on LSD. I'm not sure if there's been more in depth studies since then but I feel this is a good starting point for those who don't understand what happens inside the brain on acid.
    2 Points
  11. Jay1

    In the news

    It's definitely interesting for our group... If we can start to pinpoint areas of overactivity, we can then look to target them with meds, magnets, electrics etc
    2 Points
  12. fruitgun

    Klonopin

    Never took Klonopin but Jay1 posted his Klonopin routine in another thread. I hope it is still up to date and he does not mind if I post it here: Monday - off Tuesday - off Wednesday - off Thursday 6pm - 1mg Friday 9am - 1.5mg Saturday 9am - 1.5mg Sunday 9am - 1.5mg
    2 Points
  13. MadDoc

    Constant open eye CEVs, panic, anxiety

    Life is hard and it's tough being human. That's reality. However, life is such a miracle (note, I'm an atheist if that's relevant). We're the matter that woke up to bear witness to whatever "this" is. I've learned that perhaps my hppd gives me some insight that others may lack. I understand that day to day life can be difficult with this disorder. I'll be in a meeting at work, holding it together, while all the little dots are grouping into shapes on the table in front of me. It's hard to be normal and I often feel like an alien trying to fit in. But I feel so lucky to be here. The best thing for me was to get focused. When I'm really focused my hppd seems to vanish and I accomplish something that gives me an endorphin bump. It might be something to try. I don't know if what I've written sounds like nonsense but it's what gets me through the grind. I am very grateful for each day I get to wake up and do it again even with the constant hallucinations I experience. We're not lesser human beings because of hppd and we're not bad people for taking drugs to experience non-ordinary reality. We're simply injured. Like someone who has lost a leg or gets cancer we need to adapt and move forward.
    2 Points
  14. MadDoc

    Another one

    I do my meditation practice almost every day and have been doing so for a long time. It helps with mental focus and my hppd is much less pronounced when I'm focused. But that's me. I doubt it can do any harm. You mentioned being 40 years older. It goes by in a flash. Time is strange stuff!
    2 Points
  15. K.B.Fante

    Another one

    That's great drugs have enabled you to see the world differently but if you don't stop them now you might be that way permanently! Only you can decide what's best for yourself in the longrun but I'd urge you to at least give yourself a break for a while to see if your symptoms persist and to see how much you enjoy it. If you think life is pleasurable with 24-7 visual snow, patterns, headaches, etc., then by all means continue doing drugs. If not, then you might want to steer clear of the drug scene until you're completely healthy, or better yet, forever! You only get one life and one body. You might want to think twice before potentially damaging both forever!
    2 Points
  16. Ghormeh Sabzi

    Should I get an MRI?

    Because any structural changes in HPPD (if they even exist) are too small to see with the resolving power of an MRI, which cannot image or even make any indirect suggestions at the level of individual neurons, other cells or microstructures, which you would think might be more pertinent. An MRI can show atrophy/lesions if they are substantive enough to appear on a scan, but keep in mind practitioners assessing the images from the scan are known to occasionally miss something pertinent e.g. small tumours - this gives you an idea of the limitations of an MRI scan. If HPPD has caused physical damage or changes in the brain then those are too small to see with an MRI.
    2 Points
  17. K.B.Fante

    Threads everyone should read

    Seems like this site is more active after a period of latency with a lot of newer members, unfortunately. I thought it might be a good idea to cull some of the more comprehensive and informative threads into one place so people can browse them for information as needed. I'd suggest people add to this thread as they see fit. "Bit of an idea for possible CURE. Has some weight to it." http://hppdonline.com/index.php?/topic/1250-bit-of-an-idea-for-possible-cure-has-some-weight-to-it/& "Finding the cause. To find the cure we need to know the cause." A follow up to the above thread. http://hppdonline.com/index.php?/topic/1438-finding-the-cause-to-find-the-cure-we-need-to-know-the-cause/& "'THE HPPD Stack' - let's create one" http://hppdonline.com/index.php?/topic/3474-the-hppd-stack-lets-create-one/& "Medication Trial: Dr. Abraham" http://hppdonline.com/index.php?/topic/302-medication-trial-dr-abraham/& "Why NMDA antagonism?" http://hppdonline.com/index.php?/topic/2280-why-nmda-antagonism/& "Dear Readers from the Dana Foundation Story:" http://hppdonline.com/index.php?/topic/1921-dear-readers-from-the-dana-foundation-story/#comment-15227 "Has anyone tried Coluracetm" http://hppdonline.com/index.php?/topic/2118-has-aneyone-tried-coluracetam/& "Comprehensive Bibliography I am using" http://hppdonline.com/index.php?/topic/109-comprehensive-bibliography-i-am-using/#comment-409 "The thread about dopamine agonists and supportive agents (e.g. levodopa and reuptake inhibitors)" http://hppdonline.com/index.php?/topic/495-the-thread-about-dopamine-agonists-and-supportive-agents-eg-levodopa-and-reuptake-inhibitors/#comment-2944 "History of HPPD: Section 2 of 5. Available in PDF" http://hppdonline.com/index.php?/topic/306-history-of-hppd-section-2-of-5-available-in-pdf/ "What specifically caused your issues??" http://hppdonline.com/index.php?/topic/738-what-specifically-caused-your-issues/ "RELEASED: Initial Results of COMT-inhibition Study conducted by Dr. Abraham" http://hppdonline.com/index.php?/topic/1346-released-initial-results-of-comt-inhibition-study-conducted-by-dr-abraham/ "dna methylation/epigenetics" http://hppdonline.com/index.php?/topic/680-dna-methylationepigenetics/ "telling parents" http://hppdonline.com/index.php?/topic/241-telling-parents/ "AGGRESIVE ADVOCACY" http://hppdonline.com/index.php?/topic/1003-aggresive-advocacy/ "Success Stories" http://hppdonline.com/index.php?/topic/1267-success-stories/ "Hey! so who all has speech problems due to their HPPD" http://hppdonline.com/index.php?/topic/952-hey-so-who-all-has-speech-problems-due-to-their-hppd/ "before/after HPPD" http://hppdonline.com/index.php?/topic/874-beforeafter-hppd/ MASSIVE HPPD ARTICLE DOWNLOAD ACCESS (30 MOST IMPORTANT FREE) http://hppdonline.com/index.php?/topic/689-massive-hppd-article-download-access-30-most-important-free/ "Alcohol's effect on hppd" http://hppdonline.com/index.php?/topic/501-alcohols-effect-on-hppd/ "Movement" http://hppdonline.com/index.php?/forum/11-symptoms-descriptions-discussion-debate/&sortby=views&sortdirection=desc "Can't feel pleasure. Dopamine receptors destroyed?" http://hppdonline.com/index.php?/topic/1275-cant-feel-pleasure-dopamine-receptors-destroyed/ "Klonopin vs. Xanax vs. Valium - how do they compare?" http://hppdonline.com/index.php?/topic/989-klonopin-vs-xanax-vs-valium-how-do-they-compare/ "My profound experience with levodopa/carbidopa (Sinemet)" http://hppdonline.com/index.php?/topic/479-my-profound-experience-with-levodopacarbidopa-sinemet/ "The big 'if': Coluracetam trial" http://hppdonline.com/index.php?/topic/2236-the-big-if-coluracetam-trial/ "Thiamine Cocarboxylase" http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/ "people's benzo experiences" http://hppdonline.com/index.php?/topic/578-peoples-benzo-experiences/ "CBD Strains of Marijuana" http://hppdonline.com/index.php?/topic/1417-cbd-strains-of-marijuana/ "Keppra vs. Clonazepam" http://hppdonline.com/index.php?/topic/355-keppra-vs-clonazepam/ Benzo wd syndrome -- psych questioning its validity" http://hppdonline.com/index.php?/topic/1147-benzo-wd-syndrome-psych-questioning-its-validity/
    2 Points
  18. K.B.Fante

    Need some light and comfort really

    I'd echo what Unlucky said. Don't do drugs, not in eight months, not ever. It's just not worth it. Think about it: You either get high for a few hours with friends or potentially spend a lifetime cognitively impaired, depressed, anxiety ridden, wishing you could just go back in time to that day you messed it all up forever. As many people on this forum will tell you, drugs have been the worst thing to ever happen to them.
    2 Points
  19. Unlucky

    Need some light and comfort really

    Look I'm going to blunt but it's needed in this situation. This advice could save your life. QUIT DRUGS or sooner or later you will end up on this site for a very long time. I was in a situation were I felt off after MDMA, passed it off as something that would pass, I smoked weed and I ended up in very very dark place. It's been 6 months and there is finally light at the end of the tunnel for me. You may not be so lucky. If you really want drugs wait at least a year. But keep it minimal.
    2 Points
  20. I'm also doing an Engineering and fucked up around your age. My first year, with HPPD, was pretty successful academically so I continued taking drugs... Second year was a total failure and it took me two years to recover and feel confident again in my capabilities. I should have finished last year but I'm finishing this one, not bad at all but certainly not what I was expecting. Continue abstaining and don't ever go back to using drugs. For me alcohol was a big problem and it messes my HPPD more than MDMA. Please, don't fuck up your future. Consider going to a psychologist or psychiatrist. Take a look at CBT if you don't want to go to a professional. I assure you that time and healthy habits is all you need. Meditation, CBT, healthy food, exercise, study, socialization.. Even if you don't feel confident, get out there and go for it. Good luck!! I'm starting again because I messed up and got totally into drugs for 4 months.
    2 Points
  21. I can relate to a lot of what you've been through. I also used to be very charismatic, well spoken, etc., only to become virtually mute for large stretches at a time while dealing with this. At first I didn't have problems with slurring or finding the right words, but now that my hormones are out of whack I also struggle with that as well. Speech problems are a common symptom of brain damage so it's not like you're experiencing anything abnormal. Honestly, I think you're actually in a good position in terms of trying to heal. At such a young age your brain is more malleable and eager to repair whatever went wrong, just as long as you stay away from drugs and stress, eat healthy, etc. School can give you something to focus on, trying to get good grades and learn. Don't worry too much about what's down the road as you have plenty of time to recover. Also, try not to be concerned with what other people think of you. That's common for young people but you'll quickly realize it's also pointless and more harmful to your own happiness and well being. That said, if you've already had this for seven months chances are you're gonna have it for a while longer. Just remember that time is a powerful healer of many things and don't ever give up even when you think you've lost all hope and can't take the pain any longer. I've been there far too many times and am very happy I haven't caved in!
    2 Points
  22. Onemorestep

    keppra safety?

    I was wondering if anyone here has experienced permanent negative changes from using Keppra. I have a prescription and the success stories give me such hope of recovering some semblance of a normal life.... But I'm worried. Specifically because keppra is a racetam and oxiracetam and coluracetam made my HPPD 10000x worse permanently after stopping them suddenly. (At first they seemed to cure? Static, warping gone. Old memory back and ability to feel positive emotions back) The question I'm asking myself is if I can afford to feel worse to which I answer no but... Can I afford to not feel better? It's been a year since I entered what I feel is the second tier of HPPD hell and I often feel like I shouldn't be alive. I'm not sure how much more my soul can take of this. Since the mechanism of action for both keppra and most racetams are pretty unknown does anyone have any advice or knowledge about their similarities or differences?
    2 Points
  23. boozebome

    Dating and HPPD

    I hate when they say that trying to minimize or negate your experiences. Maybe they have some small distortions like most people do (floaters or something) and they say.. "yeah, I have that too". Fuck off!
    2 Points
  24. Jay1

    Hello HPPD onilne !

    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.
    1 Points
  25. K.B.Fante

    Inositol

    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.
    1 Points
  26. TheMythos

    Massive migraine made visuals worse

    https://en.m.wikipedia.org/wiki/Acephalgic_migraine
    1 Points
  27. SaraSara

    Negative reaction to caffeine

    I honestly don't know . I'm not qualified to answer these questions but maybe benzo's , ssri's , lsd , xct ect all mess up with our receptors , synapses ect which damages the neurons or changes the way they function. Even so , our genes allow this damage/change . Majority of ppl don't end up in this mess . Hppd/vs is extremely rare or else it would have had attention from many academics ages ago. I think those who get it after heavy drug use probably have stronger genes but not strong/correct enough which eventually leads to damage/change(or death) in neuronal function . Whatever it is there probably is a common pathway and genetics play a huge role so we might need a combination of drug and gene therapy to reverse the visuals or a combination of gene and stem cell therapy. If the visual symptoms totally disappear dp/dr will go away too . But I don't know how or why some ppl have dp/dr without visual snow. I guess their case is more psychiatric and not neurological. Whereas in our case the psychological problems are brought on by the visual disturbances. I've never had dp/dr but vs is making me miserable. I had never experienced depression or anxiety until I got this horrible disease. Looking back I really regret that I took ssri's simply because I was down due to a messy relationship. I thought I was depressed but now I know I wasn't. It was just a normal phase . I really believe that if hppd and visual snow patients unite and start making monthly donations we will understand this disease and get closer to finding a cure . Dividing into different groups isn't a good idea at this stage . Usually researchers start with a common definition and after that they divide them into sub groups such as in epilepsy. A cure will only come if we fight together and get this disease officially recognised!
    1 Points
  28. umit

    Do you have regret?

    Took me 6 to 9 months to recover from dp/dr by 4 to 5 times training and switching with running, jogging and cycling, and long distance walking to reaching close to completely cure took me 1 year and few months
    1 Points
  29. K.B.Fante

    Start medication right now or just wait?

    My personal opinion is that you're probably better off trying to get healthy the natural way and seeing if you have improvements before going on meds. Though meds are a tremendous help to many in this community I also think a lot of those people would prefer to be off meds if they could. In other words, my belief is meds should be a last resort, not a first. There are all sorts of natural antidepressants out there with less side effects. I've taken turmeric, bacopa and passionflower off and on for the last year with great success in treating my anxiety and depression. Food has helped me the most though. Either way, you might just give yourself a bit more time to see what your progress is like before you make a decision on anything.
    1 Points
  30. K.B.Fante

    Constant open eye CEVs, panic, anxiety

    I've tried over a hundred supplements, pharmaceuticals, herbal remedies, you name it -- not to mention a complete and ongoing transformation of my diet and health habits -- and if there's one thing I've become an expert at over the last few years it's monitoring my emotions, my thoughts, my anxiety and asking myself what I took or ate that could be contributing to the way I feel. I've had other health issues that have required this constant inventory too and so I'm essentially at the point where I just watch myself all day long, constantly taking stock of my body chemistry, and if there's one thing I've learned throughout this process it's that everything happens for a reason -- at least in terms of your body chemistry. I'd really encourage you to try and examine what time of day you feel best, worst, when you have anxiety, when you don't, and so on, even writing this all down in a journal if you have to, and then evaluating what you ate, what pills you took, how much you exercised and seeing if there's any correlation with how you feel. I'd be willing to bet you could figure out at least one common bond that's contributing to the way you feel. A perfect example from my life: About a week ago I started buying potatoes because they're high in iodine and I need to be on a high iodine diet for my health. I haven't really bought potatoes in over a year, however, since I started eating a more paleo-centric diet. So one night I cook up a potato for dinner, then about three in the morning I wake up completely wide awake, heart beating, with absolutely no explanation as to why I'm feeling this way. I haven't had bad anxiety in over a year, there's nothing on my mind that could be keeping my awake, I just suddenly popped up and couldn't go back to sleep. In the morning I did what I usually do when something like this happens and analyzed my diet the day before. I knew I didn't have lots of sugar before bed, and I ate mostly everything I usually do -- except for the potatoes. I then do a little research online and come across several articles that talk about how potatoes are high in carbs and one of the worst foods for people with anxiety and adrenal issues. And there I had it! I was so not used to consuming lots of carbs that when I did it took a huge toll on my sleep and gave me anxiety for the first time in over a year! And all just because of the food I ate. All I'm saying is there's reasons behind the way we feel and it's worth it to try and ask why. Maybe HPPD brains are a bit more haywire than others, but I do think in general you can get to the bottom of your emotions and anxiety by really taking a good hard look at everything you're doing, eating and thinking throughout the day.
    1 Points
  31. MadDoc

    Constant open eye CEVs, panic, anxiety

    For many years I had totally indescribable moving images in my head when my eyes were closed. Like tripping but far more wierd. They were so bizarre I really can't describe it fully. That's the one part of my hppd that went away. I'm not saying my head has totally cleared but it's much better though it took quite a while to heal. Just as a point of reference, I dosed heavily for about 6 years. You are not as you said "fucked in the brain". The fact that you wrote such a coherent post proves you're all there and clearly intelligent . The brain is very elastic and can adapt. I think the best thing to is to stop dosing and refrain from weed to see if things improve. Also, even with this condition you can live a wonderful and productive life. I mean that! Hang in there!
    1 Points
  32. Murtra

    Another one

    Yeah, full abstinence seems as the most reasonable option. Didn't touched anything except green tea since that event happened (and I'm thinking about cutting this one too). It's just that I imagine future me, let's say 40 years older, with all the symptoms gone (maybe), and still abstaining from fear of getting HPPD back. Maybe I'll be able to get away with soft stuff like alcohol or marijuana then, dunno. Probably I shouldn't worry about that now. Anyway, I often forget that I'm not feeling normal, and it looks like I can function almost normally. Good for me that I always tried to focus on enjoying that "normal" feeling, and never did drugs often enough to rely on them, so it's not that hard to remain sober. I wonder if I can worsen my symptoms by meditation and inducing OBEs with music. Although I meditated a lot since HPPD arrival, sometimes I get extremely trippy experiences (feeling my body melt, float and expand, or feeling someone's presence), not sure how experiencing one would impact my mental health right now, and I didn't found anything about the second subject.
    1 Points
  33. K.B.Fante

    Anxiety or HPPD?

    You definitely have HPPD symptoms. When I first got this I also felt extreme exhaustion. I could hardly stay awake and even everyday tasks like completing a sentence and making lunch were difficult. I think that's the result of large-scale neurodegeneration to be honest. Looking back I also think I got my HPPD from a synthetic... The only thing you can do now is take all the steps possible to heal your brain. There's plenty of advise all over this forum, so you might wanna sit down and do some reading.
    1 Points
  34. K.B.Fante

    cold turkey?

    Seems like most people with mild HPPD say the same thing, that their symptoms are just bad enough to make them reassess their life and ask themselves what's truly important without having to go through a full on mental breakdown as is the case with more severe cases. I never had a problem with drug addiction so I had no problem going cold turkey, but I can say that I highly recommend it both for healing from HPPD and for experiencing life in general. You'll get used to it pretty quick and realize how great life can be without any substances. Maybe try doing some outdoors stuff too. That's always when I feel at my best.
    1 Points
  35. K.B.Fante

    New video on HPPD

    This was only posted a week ago: What always amazes me is the comments section, reading people who say HPPD is fun and they enjoy it. I'm happy to swap them their mild HPPD for my severe HPPD and DP-DR and see how much fun they have!
    1 Points
  36. Looks like you made great progress. I am also currently recovering from a bad mushroom trip but I am only 3,5 months in. Sometimes it feels like this is going to stay forever, sometimes it feels like I already improved a lot. Thanks for your motivating post and I hope your remaining symptoms will also diminish over time.
    1 Points
  37. K.B.Fante

    when it started - now

    Mild HPPD may sound fun enough but I can assure you the last thing you want is to get full blown HPPD with DP symptoms (which it sounds like you might have already) 24-7-365 and wish you were never born in the first place. If I were you I'd take it easy on hard drugs and even weed. Sounds like you're pretty embedded in the drug culture so it might be somewhat difficult but you need to ask yourself if you want to be messed up the rest of your life or if you'd like to maybe live happily here in another 10 years when you're not doing all this crap anymore. This isn't something to mess around with -- ask a lot of veteran members of this board. Like I said, this is something that can make you wish you were never born in the first place.
    1 Points
  38. Jay1

    Hppd help

    My vision flashes about 6 times a second, this creates a strobe like visual issue that affects the way I percieve motion. It's probably my most annoying symptom. I've not found anything that helps really, klonopin reduces it a bit, i guess
    1 Points
  39. Onemorestep

    Brivaracetam

    Hope you are well!
    1 Points
  40. Guyindubai

    Keppra Trial

    How's your DR/DP? Visuals? And anexity and deppression? Also how's the mood and emotions?
    1 Points
  41. umit

    How wil hppd when we 50 60 70 years old

    I am asking and saying i have a hole life with this shit How wil we doing when we geth old like you now the brain go back wards when we are 50 mayby where slowly recoverig buth when we geth old i hope we are dont easy victims for degenarative disease because are brains are already in bad condition I scare my ass of this
    1 Points
  42. So the buspirone helped a lot with the anxiety the most and even after being off it a week, the anxiety is still almost completely gone but I did have very minor moments. I stopped taking it because it almost completely stopped working. now I have other issues. Today, I randomly feel like I'm coming down off a cocaine high and it's really bad. My appetite is deteriorating again and so are my taste buds so I am guessing these are possible withdrawal symptoms. So I did take a triple dose of buspirone today and I am starting to feel a little better but I got caught doing it so my parents are freaking out because I took matters into my own hands when they refused to increase the dose. The struggle with my dad continues since he still dismisses my HPPD and depersonalization because he "doesn't see any physical signs of discomfort". So scary how severe my depersonalization/derealization is, yet I appear completely normal to most people. I haven't smoked weed in a few weeks and honestly I felt better when I started smoking weed again NOTE : I DO NOT RECOMEND DOING DRUGS AGAIN. Some people get lucky and others don't
    1 Points
  43. trip into hell

    Defenition of a cure

    ill start doing sports regulary because i want to smoke weed again when im cured XD
    1 Points
  44. Annnd Im back with some new information. One thing that I always noticed about HPPD is that it has an impact on flight or fight type response, and I was thinking that if there were a way to inhibit that, it would probably significantly reduce the stress and anxiety induced on the body/mind. Today I was reading and found this little bit. "Many sympathetic hormones and neurotransmitters are based on the phenethylamine skeleton, and function generally in "fight or flight" type responses, such as increasing heart rate, blood pressure, dilating the pupils, increased energy, drying of mucous membranes, increased sweating, and a significant number of additional effects." Theres a possibility that HPPD may be a condition that stimulates the production of specific neurotransmitters in this area related to phenethylamine. One way to test this theory, would be something that reduces phenethalamine production, take it, and see if symptoms are lessened. IF this is the case and can be observed, we would have a potential trigger mechanism for the cause of HPPD. It also would give route for a potential method of treatment.
    1 Points
  45. 256

    Dating and HPPD

    Do you guys also hate when people say "you seem fine to me" kindof a tangent but thats what friends and girls say to me when I tell them.
    1 Points
  46. Kellen

    VICE article on Visual snow

    http://www.vice.com/read/i-have-a-rare-visual-disorder-thats-like-being-on-psychedelics-all-the-time Amazing. This is probably the most exposure the condition has gotten to date. Check it out
    1 Points
  47. ftballkid016

    Success Stories

    Hi Everyone my name is Jon I got hppd a year and a half ago. I am completely free of hppd now. I got hppd after taking shrooms ,lsd , and mdma When I first got it I did not know and just figured it was a bad come down from the drugs but after a few days and I noticed I really had a serious problem. That was a year and a half ago and over the course of the year I took steps to better my health and mentalitly that i know where huge in my recovery process. I just put up a youtube video if you want to watch. youtube.com/watch?v=7S_tCq2WX0w.I think the hardest part about this disorder was the fear of having it and just constant worry about the future and having deep thoughts all the time about life. etc My advice to you would be try and get your mind off of the bizarre and deep thoughts about yourself the world and whatever it is that is making you so scared. I know it sounds alot harder than it can be. Just take very deep slow breath and take every moment as it comes. I good quote from good old abraham licolin " the best thing about the future is that it comes one day at a time" I also recommend taking all junk out of your diet because the reason you are here is from drugs that are obviously arent good for your body and brain. Just because some people or most people can handle these drugs not everybody can. You will also need time to let your brain heal and your body counts in months not days so it will need time. But if you stress about it the whole time its not good for you and can prolong the recovery process. If you have a very busy schudeule I would suggest if you can to give yourself the most down time you can to just releax and enjoy the things you love about life. Music,movies,tea. If you have a family that supports you tell them everything and that you need help because your experiencing a rough time and everyone has them. Just do not worry and enjoy the most you can throughout your day. Finally stop hanging out with people who are not understanding your problem and who do not care about you. These people can actually make your condition worse if they are encouraging you to take more drugs and do things you know deep down are bad for you. It comes down to you about how fast you get better. I know you can all do it though because if I CAN THEN ANYBODY CAN. Just to let you all know how bad my situation was. My symptoms incuded Visual distorions, thinking like i was going insane i literaly believed I had skitophrenia because I never had such bizzare thoughts and feelings. I could not connect to life or people I felt like an object in a room. But enough of the negative you can break these feelings like throwing a rock threw glass. Look the other way. Stop paying attention to the negative in the day. And be glad that you are ALIVE because as much as you do not feel it you are just as real and Alive as the pain you are feeling. TRUST ME FRIENDS YOU CAN DO IT!
    1 Points
  48. Heres a good write up/explination of whats going on when hallucinogens or neurotransmitters enter the synapse. The adjacent neuron’s postsynaptic membrane appears as an elaborate, thickened complex of interlinked proteins gathered on the surface of a dendrite, which is one of the many arborizing extensions of a neuron. Neurotransmitter receptor binding alters the electrical potential of the dendritic membrane, which processes spatially and temporally the incoming barrage of synaptic impulses to form a signal directed toward the cell body. The dendrite receives both excitatory and inhibitory synaptic inputs. Once a sufficient number of receptor binding events occurs and threshold is reached, the postsynaptic neuron then fires an action potential. That momentary electrochemical flux becomes one nod from one neuron among the brain’s hundred billion.1,2
    1 Points
  49. 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.
    1 Points
  50. mbellamy09

    Considering Anesthesia for an operation

    ive been under 6 times since HPPD no issues whatsoever with me.
    1 Points