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  1. 11 points
    Several months ago I mentioned in the introduction forum that I had dealt with HPPD since about 1974 and have for the most part come through it all successfully, though not unscathed by any means. I said I'd share the list of thing that I feel helped me, with the hope that others can find some help too. ---- * Intro: My HPPD started after I'd taken many acid and other hallucinogen trips, smoked a ton of weed, and done lots of other regrettable things over the course of a few years starting at age 14 or 15. This was way before hppd was on anyone's radar. We heard stories of people who tripped and never came down, but didn't believe them. A couple weeks after a particularly unpleasant, anxious acid trip, I started to feel like I was tripping, had visual snow, trails, a feeling of impending disaster, depersonlization, all the classic symptoms. My HPPD had started. * First stop, psychiatrist: I was prescribed antipsychotics, possibly Thorazine at first, then finally settled on Stelzine, with Artane to prevent tardive dyskenisia. For the next several weeks to couple of months, I suffered terribly with the symptoms, which the drugs did nothing to alleviate, as well as the effects of the drugs themselves. Then, on a followup visit to the Dr., he cruelly and dismissively said words to the effect that I was way more fucked up than I thought I was. * Second, fighting back: That catalyzed me - I was going to beat this! THIS WAS THE FIRST STEP TOWARDS HEALING. I vowed that I was going to clean up, get off the antipsychotics, and get my act together. I started with all the usual "good lifestyle" choices: eat right! rest! exercise! And I think this cannot be overemphasized. * Third, refusing to give in: So now I started a long process of simply forcing myself back to normalcy as best I could. I tried various supplements and so forth: even put eggshells in my omelettes because I thought the calcium would help. I don't think anything really did, outside the fundamentals - again: eat right, rest, exercise. I found that walking, hiking, biking was excellent therapy. These basic motor skills are unharmed by the drug effects, unlike things like reading and driving, so were a good basic fallback. Plus the release of endorphins is helpful. Do it. Do it as much as you can. When I would have bad acid trips, walking was about all that I could do, and it was helpful dealing with the HPPD. * Fourth, getting involved: As difficult as it was, I forced myself to be in the world. I went to junior college. I got a girlfriend. The intellectual activity, and the emotional attachment were really helpful. I eventually felt that I was recovering, even though I still felt depersonalization, and still had visual artifacts, and I was able to function quite highly. I had simply given myself no other choice. There weren't any other treatment options, so I determined that if I was going to be on my own with this, I was going to just plug and plug away. * Fifth, staying clean: All this time, I assiduously stayed away from any sort of substances. I have to emphasize this to fellow HPPD sufferers: you cannot afford to put any more psychoactive material in your system. When I got too overconfident in my recovery, I started doing cocaine ... and relapsed. After a night of partying, I looked down at my hand and it had the far-away look of depersonalization, the dawn sky was fully speckled with snow, and I cried my eyes out when I crashed into bed. It was back. DON'T DO ANY SUBSTANCES. I had to regroup, get back with my program, go clean again, and work really damned hard to regain my lost ground. * Sixth, valium when it got bad: Eventjually developed a type of vertigo somewhere along the line, which may or may not have been related to the HPPD. It was like my peripheral vision was out of synch with my body, and it was a chronic feeling of being off balance and of the world moving. It was particularly horrible. So, I saw a vision perception specialist, and took valium - the only drug that ever helped any of my HPPD symptoms. I mention it here because even if the vertigo was not related, I assumed it meant that together with the HPPD it meant I was brain damaged. The valium definitely helped calm the panic about that. Still and all, through this I was able to complete college and live a quite reasonable existence in New York City. * Seventh, vision therapy: because the vertigo seemed vision related I went to a vision therapy specialist, but I think it was helpful with taking my focus away from HPPD visual symptoms. Search on the web for vision therapy modalities; I just briefly looked at http://www.visiontherapyrocks.com, and it looked like it had some good links. * BREAKDOWN * Then I had a psychotic depression. I have no doubt that the HPPD had made me susceptible. But the short version is that I ended up hospitalized, then underwent ECT and was put on an antidepressant. * Eighth, recovering all over again, antidepressant therapy: I believe the ECT helped, as well as the medications. I have been taking carbamzepine and SSRI's (Prozac and Zoloft), and for the most part have been completely unbothered by my HPPD for many years now. Coming out of the depression was a slow road, and I'm sure it was related, but once recovered, my symptoms of HPPD no longer bother me, even when I am aware of trails, afterimages, or snow. The vertigo disappeared too! * Ninth, PTSD treatment: after several trying years, and some unrelated traumas, I decided to look into PTSD treatment. The treatment modality was hypnosis plus EMDR (look it up). In treatment, I realized how traumatic the experience of the drug use and the resulting HPPD had been. The trauma treament I underwent made a huge difference for me in reducing the intensity of my memories of the horror of those times, and helping me integrate more fully. * Tenth, ongoing work on my Self: I continue to work all the time on understanding my mind and feelings. My current work is around Focusing (http://www.focusing.org/newcomers.htm) and it is a useful tool for opening up to exploration of feeling impressions, and guiding one's travel through one's experience. We have worked on my history of HPPD symptoms and it has really helped me feel relief from some of the superstitious and irrational thoughts that were an unconscious burden I carried after all those years of trauma. ----- So that's my success story - I never got totally over the HPPD, and I continue to have personality difficulties that I think are related to all the drug use at such a young age. I still can see more prominent after-images than I like, I see visual snow, I can see faint trails. But I am free of the feelings of dread, free from the depersonalization, have had several long-lasting relationships, have several kids, a BA degree, six-figure income, and am here if I can help any of you! Recap: 1. Antipsychotics, probably not useful. 2. Fight Back! Make a committment that you are going to beat this. 3. Refuse to give up, stay on a program of eat right, rest, exercise, exercise, exercise. I found that sugary crap made symptoms worse. Do veggies! Lots. 4. Get involved. Even though you are in a bad state, try to force yourself to engage in any way you can. Chat up the grocery clerk if nothing else. Try to read, study, do things you (used to) enjoy. 5. Stay clean. Don't even think about doing a little of this or that. Even though coke is not a hallucinagen, doing it set me back years. 6. Try diazepam and related. I found no shame in relief through valium. Do it through your doctor. 7. Try various vision therapies. You can learn to change the focus of your attention, and a sympathetic vision therapist could be really helpful. 8. I underwent hard-core depression therapy, it's not something you can ask for at your Dr.'s office. But I wonder if ECT helped my HPPD! It's possible that the SSRI's and the Tegretol have helped. I just don't have clean data here, for obvious reasons. 9. Try PTSD/EMDR treatment. You are undergoing a traumatic experience, and the trauma just reinforces the HPPD as well. I believe that the PTSD nad EMDR treatments could be excellent help. If you contact me, I will provide a link to a specific practitioner who has MP3 recordings you can buy which may be helpful to you as they have been to me. If there is enough interest, I would contact this person and request a series of custom-made recordings for alleviating the stress, anxiety, and traumatic feelings that go with HPPD. 10. Try Focusing. "Clear a Space. Feel the feelings. See how you would characterise, describe the feeling. Find resonance with how you describe it. Ask yourself what makes it feel the way it does? What does the answer say about it? What does it need, and what is in the way of it feeling better?" This is somewhat like the line of thought that goes into a focusing session, but check the website at focusing.org I hope this helps, even a little. Please let me know if you have any other questions, if you want to find out about the MP3's, or Focusing. Hang in there. Don't Give Up!
  2. 11 points
    Here is my success story. I really hope this helps people because when I first got HPPD almost 4 years ago at age 23 I was a total train wreck and thought I would never get my life back. I am certain that this forum played a huge role in saving my life because for a long time I was seriously worried that I would have no other way out than to take my own life. This was definitely my darkest time and it makes me a little sick to think about it but I feel like I owe it to all the kids out there who are suffering. I'll get to the point. I took mushrooms for the first time ever and I flipped out. There seems to be a pretty standard story to this...total fear, a feeling that the trip will never end, it was a feeling I had never felt before. In my mind, I went to hell if it does exist. I woke up the next day feeling wierd, just off, sort of empty. I didnt think it anything serious until a week later, on new years day, I woke up after a night of partying in Las Vegas, and I knew something was wrong, I was sick, I was throwing up, and I was terrified, my vision was changing before my very eyes, everything was moving, and I knew something was wrong, the first thing I thought when I got up...the mushrooms were coming back to get me. I tried to tell myself it would be ok, that I was just sick from drinking, but it didn't stop. I didn't eat for almost a week, and I went to the hospital to get an I.V. to rehydrate me. In the ER, there was a true psychotic woman having an episode, It terrified me, because I felt I could somehow relate to her. I thought I had really lost it and I would never be the same. I'd heard of people "freaking out" and stories from the 60s, musicians like Brian Wilson going nuts on acid ect. and I starting thinking I was one of them now. I went home and felt so empty, but I couldn't even cry. My parents came back from a trip they were on, and it was like I didn't even know them, I was in my own little world. Things that were familiar were foreign to me, nothing was the same. As I worried more, things got worse, I started having panic attacks daily, I couldn't sleep, and my visual symptoms got worse. I had horrible headaches, nausea, paranoia, depression, visuals, the whole nine yards. At this point I think i was pre depersonalized, the panic was very strong, and it drove me deeper into a state of numbness. I was having terrible nightmares when I did sleep, finally, I think my mental anguish drove me into a state of numbness, where I couldn't feel anything around me, just like a zombie. I would say this was about 4-6 months into it. I started seeing therapists, and it helped a bit to have someone I could talk to because I didnt have anyone. None of my friends got it, and I was scared to tell my parents. At that point I wasn't even sure if they were real. I started reading on the forums, and this was a real game changer. I started to learn about some of the things that were happening, like the depersonalization/derealization, anxiety, ect. But more than that, I learned that there were people just like me, that I could talk to and would understand me, and even better that some people had survived it. This gave me what I needed, a little hope. Something to AIM for, a light at the end of the tunnel. Of course I was unsure and skeptical that I would get better, but at this point, in what seems like a rather odd reasoning, I decided that I couldn't be any worse off, and that the only choice I had was to get better, I really had nothing to lose. I knew it wouldn't happen soon but I thought, hell, I've survived this long (it was probably a year in) I can keep going, so I kinda just put my life on autopilot. I bought myself some time, I said, hey I'm just gonna deal with this day to day, not try to push myself too hard, and maybe in a few years I'll at least be able to function. That was a big deal, I accepted my situation, that it was gonna suck now, and that it would be a long time before I got better. During this time I had a lot of bad days, I also had some good ones. But every time that I had a good day, I kinda put that in my mental bank. Like saving pennies at a time. They add up. I made habit of doing things that would promote overall well being. That meant regular exercise programs, eating better, meditation, and yoga. I began to make steady improvements, I started having more good days, and things looked better for me. Someone once described HPPD as sort of like throwing a stone into the water, a huge splash, then lots of waves, ups and downs, and the slowly get less and less intense and I would totally agree. There was a long period of about 1 1/2- 3 years into HPPD that I began to get frustrated because I would feel great and think I finally beat it, then relapse again, I just wanted to be better, but again, time heals. This coming New Years day will be my 4 year anniversary of the day HPPD and I can say that this is behind me. In fact, I look back on it and I almost don't believe myself. It's almost like it was just a terrible nightmare. Which is how I had hoped I would look back on it some day. I want to put it behind me and never look back. But at the same time I want to help the kids that are on here because I know how terrible they feel and they need help just like I did. I owe it to someone because I survived and I want people to know that you can beat it but it takes work and commitment. I still feel a little lost, like I'm not sure who I am as a person, but I at least feel like I know where I am (haha). I just spent 4 years in a nightmare and now I'm awake. So I will try to offer some advice. The forums are great for helping you out, but don't spend too much time here. Don't spend hours on hours reading about peoples problems, about mental disorders. Education is good but at some point it will only make you more obsessive. Also, there is a lot of negativity here that will bring you down, because people that are on here are mostly here because they are having problems, not because they are doing great. For every 1 success story you will read about 20 horror stories. It's like watching the news, they only report on the bad stuff, you will never turn it on and have the reporter say "hey, everything is great." Again, do stuff that promotes good health, a healthy body is a healthy mind. Get outside and enjoy nature. I found it easier to connect with natural objects. Try to feel the sun, or the breeze on your face, little things like that. They can help you feel alive. Stop doing drugs, alcohol, tobacco, or limit your intake if you can. Smoking weed really made things worse for me. Talk to someone that can offer something positive and will understand your situation. If anyone ever wants to talk, on the phone, email, whatever, hit me up. Believe you can get better.
  3. 7 points
    I have been putting the time and effort in the development of the website, changing the layout a bit, adding content. Could really use some feedback and advice. I'm not scientifically inclined about this condition but reading up as much as I can and trying to articulate it in a manner that would educate the layperson as well as generate interest from the scientific community. The goal right now is to optimize the website and then send a pitch letter of invitation to put that board together. I really could use a hand. www.neurogroup.org
  4. 6 points
    The Visual Snow Syndrome study carried out by Dr Goadsby is close to starting a treatment phase of research . Yesterday Jen Ambrose posted an update ongofundme : https://www.gofundme.com/visual-snow '' Hello Eye on Vision Supporters!I'm sorry that there was such a long delay in hearing from me, but I sustained an eye injury in Feb and am only recently returning to limited computer use. I do have an update from London to share with you. Patients have begun to be qualified and scheduled for testing. Scans are scheduled for May and June at King's College. This is an important phase of research, because what is learned from these scans will determine how we enter into a treatment phase of research. Without this phase of research, we will not be able to proceed to medication testing. With that being said, I've been approached about funding for Dr. Puledda's salary for another year. Dr. Puledda works under Prof. Goadsby and is the primary doctor assigned to the Visual Snow research at King's college. As stated in previous updates we need approximately $70,000 USD per year to employ her. Currently we have only raised $20,000 USD which is a far off sum from what is actually needed to secure her. Almost all of you reading this who have VS have likely undergone an MRI. You have likely seen the very high bill to your insurance, or you have paid out of pocket. It's not uncommon to see bills over $1000. We are very fortunate that King's College covers all of these costs towards VS research. We need to assist them though by being able to pay Dr. Puledda for her time and efforts on our behalf. We would love for you to become a monthly donor and help us achieve our research funding goals. You can sign-up as a monthly donor here:http://eyeonvision.org/donate-to-the-eye-on-vision-foundation.htmlThank you, Jen Ambrose Please everyone make donations!! I know you guys got visual snow syndrome from drugs ( just as the forum info section itself says : drug induced visual snow syndrome ) but the symptoms are the same . A cure could be on the horizon if we start making donations!!! I've posted links about few other rare diseases that have found cures( or are close to finding one) purely by making large donations and not giving up . This is what patient determination and donations can do : https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/ there are some other articles I came across a while back but I don't have the time to search for all of them again . However I hope that the above articles will inspire you to make donations for the visual snow syndrome research. It's the only option we all have left now !!!
  5. 6 points
    recovery is subjective.. i mean physically we can never be the person we were before becoming the way we are. just by virtue of the constant changing off the cells/particles/memories/stomach contents/brain chemistry/synaptic connections/environmental factors.... the me of this second is never going to be the same as the me of even 5 minutes ago. I'd count a full recovery for myself is being able to perceive the color black again. to not know what it means to see the colors redblue and greenorange and cosmic purple all the time. (if you know what i mean then you know... you know...) everything else i take as consequence for my actions and are part of who i am today whether i like it or not. at least if i could see black again and not have a 100% always on electric current running through my visual field... maybe i could sleep.. maybe i wouldnt suffer as many headaches.. maybe my stress levels would decrease and my stomach would calm down.... so if i can recover black at least.. i could call myself a success story
  6. 3 points
    Guys, let's calm it down a bit... @TheMythos let's see less swearing and personal attacks. I haven't had a chance to keep up with this article, but it is clearly marked as "a bit of an idea"... It's not claiming to be a science paper. Let's all try and pull in the right direction. If something doesn't ring true, politely put across your counter point or just leave it alone, unless you think it is damaging to the people who might try it.
  7. 3 points
    The non profit is up and running. Starting a seperate post with clinical tirals and donate information. Took me long enough but I'm a persistent bastard. www.neurogroup.org
  8. 3 points
    Great advice. I know months can feel like decades in that early stage. I vividly remember it myself... But it is essential to give yourself the best possible chance to recover... Try and remove as much stress from your life as possible. If you need to take time off, do it... If you need to lock yourself in your room, do it... Whatever helps with stress... You can quickly get your life back on track once you recover or learn to deal with this. I would also add that self blame/self loathing is great fuel for stress and anxiety. If at all possible, forgive yourself for taking risks with drugs and realise that no amount of wishing you hadn't done something will ever make it so... It's wasted energy and added stress, so just forgive yourself for doing something that millions of others do, learn and move on. (easy said than done, i know!).
  9. 3 points
    Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:
  10. 3 points
    I forgot one really helpful strategy too: my vision therapist suggested that I use tinted glass to reduce light sensitivity, and since I seemed more sensitive to blue spectrum for afterimages and trails, I got yellow-tinted glasses. It definitely helped!
  11. 2 points
    I've seen some threads on this forum decompose into insults and shouting matches. We all have opinions, perspectives, experiences, and information we've obtained from various sources. If someone posts something you don't agree with, pisses you off, or seems like misinformation, please reply in a constructive and courteous manner. Before you post, think about what you might say if you were talking to the person face to face, and don't forget to be kind. We're all struggling with a difficult disorder. Remember, we all have the goal of being well. Let's help each other get there. Thank you.
  12. 2 points
    When I was a mere thirteen years old and 1 year into full blown HPPD, two ex drug users came and gave a lecture at school and showed a film of what can go wrong with hitting up intrevenously. It was rather graphic, showing users whose veins came stringing out of their arm and infected ulcers. It scared me terribly, though I was never a drug needle user. I had already scared myself away from drugs because of HPPD that basically ruined my life as far as I was concerned then. But the fear element was a powerful teacher too late for me. At the age of 12 in 1969, drugs, especially psychedelics were glorified in the Rock music world. Teachers, parents, law enforcement all warned us of the dangers of using LSD especially. This was when little was yet known about long term harmful effects. We were warned but encouraged through a youthful rebellious culture. Had there been the long term experiences we now know of, perhaps some of us would have heeded the warning. The warning label should read, if you take this drug there is a real chance you will stay high for the rest of your life! And so...I would like to see such a warning for the younger generation now. When I go back in time and think of my responses back then when I was warned, I thought that there is always a remedy, always a fix. But this is not always true. This is the reality warning that folks need to hear before they consider using psychedelics. It seems that these mind altering drugs open pathways that may never close again. It is like a lost innocence. I think the most important thing I can do is to warn others not to take drugs, especially psychedelics. Can you recover with strict diet and lifestyle? Perhaps so, after time and much effort. But perhaps not. All this being said, I think it would be very worthy to find ways to warn others. Perhaps to go into schools or even make ads online via social media. Were we tricked by the offer of cheap thrills so drug pushers could make money? Were we encouraged by musicians who made us feel we belonged to something new happening? There are many very serious questions. Why we follow harmful trends. Why we gample our one and only life for a few hours of pleasure. I don't think I can answer without taking serious responsibility. Back in the day I introduced others to drugs too. I'm sorry. It was foolish. Many in my high school have suffered terrible fates due to drug use, including suicide. If you are using psychedelics...., I would like to scare you with reality. There is a huge risk and some of us were so very young to take such stupid risks! I'm wanting to speak out and speak plainly. Maybe some young soul will be forewarned enough to never experiment. Experiment? Our youth became the world's guinea pigs? Love and peace to all. Any ideas in how to warn our youth?
  13. 2 points
    Danjoking, you're right. I apologize for my behavior. The above response by mane isn't worthy of a response. He's clearly on a tear. I pray for his, mine, and all of our healing. Good night. Hope you guys get over this illness in due time.
  14. 2 points
    There's no question, it does get better. Never underestimate your ability to heal and to adapt. Life is weird, all we can do is the best we can do.
  15. 2 points
    Hi! Welcome here edguy. Sorry for hear that. In my experience, since I've been sober for one year now. (I tried to smoke ago one year, and I relapsed so bad), all my symptoms are really better, to the point I can't notice them. I hate the fact I've forgotten how I used to ''see'', but I love to get fun and be happy again, since I've accepted my new ''reality". Give it time, and stay away from drugs! I'm 99 % better, I promise I'm not liying. Only tracers. No dp/dr or anxiety anymore! Cheers & bless. Give it time to see how things can going withouth any meds and withoung put more chemicals on your brain First, try to let the body recover on its own. Then, you could see for any meds help, if you need it. Try yet to don't put any more chemicals in your brain first and try to stay away from drugs, please! it's the best advice I can give you, from my own experience. You'll be better. Take care, and cheers it up.
  16. 2 points
    Did you shoot your load into your eye?
  17. 2 points
    I'm here to bring you hope. After 4 years, my dp/dr has almost completely gone. Anxiety is gone. I'm fighting with depression (because I've lost lot of time and have family problems.) and OCD. I'm good, because, before HPPD, I wasn't so good either. I mean, of course I wish I hadn't had hppd, but I wasn'tt a particularly mentally healthy boy before I had my HDPD. Take care and cheers.
  18. 2 points
    I don't know when I actually aquired hppd because once I started dosing there was rarely a week that went by that I didn't dose. I had some suspicious symptoms after my first dose so let's say it started there. That's roughly 45 years ago. However, I didn't realize it wasn't going away until I stopped dosing. That was roughly 39 years ago. I'm saying all this because I have a simple message. Even though I have this disability, life is wonderful and I feel like every day I get to live is a gift. I've always felt that checking out wasn't an option. Life with hppd can be difficult but we have this incredible opportunity to experience life. We're the matter that woke up to experience whatever "this" is. I realize I've said this before, but I thought it might be worth repeating.
  19. 2 points
    I've had it for 36 years. The first couple of years were really bad but it does get better. I've said this before elsewhere, but I imagine we all get this at a very young age and it's hard to determine how much of the early angst is HPPD or just growing up, which is hard on most people. Also, despite my mourning of my previous self early on, if I'm honest I had suffered from depression and anxiety before drugs. For me things started to get better when I accepted my present self as myself. We all have growing up to do and, as a 55 year old I'm still growing and facing up to my behavior. Excercise is the best remedy in my opinion. And anything else that gives you a feeling of self respect and pushing on with your life. Everyone has their issues. The visuals become barely noticable. It's the obsessing over this and the past that's damaging. Treat the symptoms individually, not as a whole. If you're anxious, treat the anxiety. Don't kid yourself that a pill will cure this. That's how you got here in the first place. Get healthy. Good luck.
  20. 1 point
    ^ That. My HPPD didn't start after a single dose. I dosed up to ~200ugs. It settled in once I started microdosing once a week, and smoking a joint each microdose day before going to bed. At first, I found the VS cool, and thought it was just a side effect. After about a month, I realised it would not go away and stopped all drugs. HPPD stayed with me ever since. It is the repeated dosing that made me develop this disorder rather than the dosage itself.
  21. 1 point
    As far as I remember, studies from Dr. A. suggested that people experiencing a bad trip will have more chances having HPPD. But you don't need a bad trip to have HPPD. If we don't include flashbacks which are more PTSD oriented imo, I would say it is a chemical imbalance, as some PET scans showed.
  22. 1 point
    I'm afraid we can't really scare anyone away from psychedelics using HPPD as a reason. The problem is that you can't see HPPD nor experience it if you don't have it. It's easy to show H users having ulcers and overdoses and such, because it can be recorded and used to scare people away from these drugs. But with HPPD, if you say you have tracers and VS and after images, most people will think it's cool. If we can prove that HPPD damages our brains and be like Alzheimer's where basically you just wait for your neurons to die, that might change the public opinion. Me as an example, I heard about HPPD and flashbacks when I started using acid, did this stop me from using it ? Of course not ! I thought that this only happens to others, mainly people that are predisposed to schizophrenia and whatnot. The other problem is, as you said, the glorification of the drug. Famous youtuber PsychedSubstance makes videos on psychedelics. He keeps talking about harm reduction, test your drugs, 25i-NBOMe etc etc, but he underestimates the risks psychedelics involve. He says that flashbacks are very rare and just PTSD, while he says HPPD is something claimed by attention-whores but nothing to be worried about. In fact, it might not even exist. Harm reduction ? Yeah right. So if we want people to take HPPD (and psychedelics) seriously, we should focus on proving HPPD damages our brains in a serious way and let the public know that LSD and similar drugs are not safe. As Dr. A. said, LSD is like russian roulette, but with drugs. When I heard LSD was physically safe, I told myself : Well it's probably mentally safe for me as well since I'm not crazy ! And all these youtube channels should stop glorifying drugs. Because in the end, you can call it a tool, an eye opener, a mind expander or whatever, it's still just a drug. It won't put food on the table at the end of the day, and won't pay your bills at the end of the month (but will make them more difficult to pay !).
  23. 1 point
    Hello. So, you only took MDMA that one time? Do you have a history of taking psychedelics? If that's the only time you dosed, then that's good news. Some of your symptoms sound hppd like and some of them sound like normal visual imperfections (star like shape when looking at lights). You may just be noticing the after effects of your chemical experience which should resolve fairly quickly. I would stop taking psychoactive drugs including cannabis for a while, several months at least, six would be better. After being clean for a while, see how you're doing. Try to keep focused and don't spend lots of time examining each possible symptom. Of course, the best way to avoid hppd or to keep it from getting worse is to avoid chemical entertainment altogether. Please understand that I have no medical training and I'm not an expert on this disorder. I'm just an old guy who's had it for a long time. Take care.
  24. 1 point
    Success story After 4 years; my hppd is finally gone for real this time. Will post more on this later
  25. 1 point
    I'm already effed up enough because of HPPD and my many other disorders. Now the last thing I want is some guy on a forum insulting people saying they're wrong when, in fact, that same person has nothing to offer apart from insults to back up his "claims". There are ways of defending your ideas, and sure, go defend them. This is a forum after all, you're welcome to do that. But shitstorming, especially on a forum like this one, is childish.
  26. 1 point
    I first dosed shortly before my 14th birthday. I've also wondered if dosing so young might contribute to getting this disorder. The thing is, the "kids" I dosed with didn't seem to contract hppd. I believe they see the world through a stranger lense than most even as adults, but no hppd. Granted, the "people i dosed with" is rather a small sample size and not statistically relevant. I did have one friend who became very depressed and checked out early. I'll never know if dosing/hppd contributed to her depression or prompted her early departure. I'm just happy to be here today.
  27. 1 point
    I was listening to a podcast yesterday where someone with a brain injury was talking about how suicidal ideation is a common symptom or outcome of brain damage and I thought it was interesting given I had severe ideation through about the first year and a half of dealing with HPPD. It was also remarkable how similar her symptoms and story were to mine, which is often the case when I hear or read about brain injuries. I've long held HPPD is a brain injury but of course I can't prove it and neither can anyone here until more research is conducted, which unfortunately isn't likely anytime soon. That said, here are some similarities between common brain injury symptoms and my experience with HPPD: -- A "normal" life that abruptly changes after the occurrence of an incident resulting in complete life upheaval (state of abnormality if you will) -- Painstakingly slow recovery over the course of years following a balance of mostly rest with some mental and physical exercise (this would explain why stimulant substances and sometime even exercise often exacerbate HPPD symptoms; a damaged body needs rest, not stimulation) -- Compromised brain cell metabolism and glucose (explains brain fog head pain from sugary foods) -- Headache and head pain -- Difficulty with balance -- Blurred vision -- Visual disturbances -- Fatigue -- Changes in sensory perception (DP-DR could certainly qualify) -- Memory loss and forgetfulness -- Delayed mental processing -- Trouble speaking -- Disoriented sleep patterns -- Poor attention -- Depression and anxiety -- Light and sound sensitivity -- Nausea -- Irritability and mood changes --Inappropriate behavior -- Difficulty with reason, logic or focus -- Personality changes -- Normal MRIs As my condition has improved so have all my symptoms, however what I find striking about the list above is how many of these symptoms I had when I first got HPPD. In fact, I don't know that there's any I did not have, outside of perhaps nausea. I also never got around to taking my MRI but given the normality of those who have and the fact mild brain injuries don't show up in the scans it's also another similarity that shouldn't be overlooked. Part of the problem with identifying HPPD as a "brain injury" is that most of us have seen doctors who aren't trained in identifying subtle injuries outside the pervasive "Traumatic Brain Injury (TBI)" category which is mostly defined as injuries sustained through force. However, there are other forms of brain injuries, including mild brain injuries, that break down into many different categories and classifications which could very well correlate with HPPD. The most likely I've found is what's called "toxic anoxia," which is when the brain doesn't get enough oxygen due to toxic chemical interference. According to the Honor Society of Nursing, illegal street drugs are considered culprits of toxic anoxia. Another interesting field of study involving brain injury is that of impaired cellular function and metabolism in the immediate aftermath of the sustained injury. Regardless of what exactly leads to HPPD there can be little doubt that our brains are underperforming, which could be a result of abnormal and impaired cellular metabolism -- essentially, the normal processes of healthy cellular functioning have been interrupted for whatever reason. If you're someone who takes issue with the idea of necrosis then perhaps you will be more comfortable with the idea that the cells in our brains still exist but are simply shocked and unable to perform in high-potency environments. I'm enjoying reading about this stuff so I'm going to continue to see what I can find and will post here if anything piques my interest, however I do think it's important to plant this seed and get the HPPD community open to thinking about brain injuries specifically. If we continue to maintain the attitude HPPD is a beyond our understanding simply because we don't understand it then we likely won't make any progress in getting the medical attention we deserve. I think if we can at least adopt a general acceptance of some from of brain injury it would at least help push us in the right direction medically and away from the much stigmatized psychiatric route we've often pursued. If we push the narrative that toxic drugs lead to brain injury by talking with neurologists rather than that hallucinogens unlock some form of deep-seeded emotional imbalance by seeking out psychiatrists I think we'll have more luck in at least getting some attention to be honest. I really do think the way we phrase our condition can have an affect on how soon we're treated or whether we're treated at all.
  28. 1 point
    Ibuprofen doesn't do anything HPPD wise as far as I'm concerned.
  29. 1 point
    That's interesting. Ibuprofen gives me a calmness and makes me forget about the symptoms for a while
  30. 1 point
    Mythos, I'm really having trouble putting together how the study you posted applies to the theories you have. All I can gather is that you believe that because there aren't increases in internal heat, that there is no neuronal loss? Do you believe that that is the only potential circumstance for neuronal loss? lmao. Also, I dont think you completely understand the condition of PTSD, which based on your posts, doesn't surprise me. I dont think you understand that study either. I think its really offense to try to demotivate people working hard trying to find the cause and cure for this detrimental and very real disease. I'm glad you'll never be a physician, because the best advice I can see you giving cancer patients, is to ignore whats happening to them. Its not real if we dont acknowledge it correct? Lmao but those patients will still die. Honestly your theories are so profoundly flawed that all I can assume is that you wake up every morning believing its not real to FEEL better, not actually become better. Which if that is your way of handling it, thats fine with me, but dont go around trying to criticize people trying to help themselves and others in a REAL way in a REAL world for a very REAL condition. Also you should not speak of your "theory" as definitive, when in fact you have literally zero proof for anything you have said.
  31. 1 point
    No sorry man , I meant it’s happened because weed and alcohol, I have been sober when I noticed i got hppd 2 month and half
  32. 1 point
    The NSRF is moving swiftly towards world domination !!
  33. 1 point
    You guys ever think that maybe sitting around on this forum talking about this receptor or that receptor or that brain region could be contributing to the problem? I'm so glad I don't sit around and read this shit anymore. You don't have brain damage. You have anxiety.
  34. 1 point
    Wow this is incredible. I’ve suffered from hppd for almost 4 years now and I’ve just discovered I have antibodies to my GABA-B receptors. This means I have autoimmune encephalitis and there is treatment for it. I had a suspicion if others with hppd also had a form of autoimmune encephalitis and this confirms at least some others do. Having anti achr antibodies means you have autoimmune encephalitis and it could be paraneoplastic. Please look on Autoimmuneencephalitis.net and look under the antibodies of autoimmune encephalitis section. It talks about all of them. To treat I’ve started doing IVIG therapy and will move onto a therapy called Rituximab which is an immunosuppressant. I’ve noticed some slight improvements from the IVIG but I have just started treating so nothing major yet. How did you hppd begin?
  35. 1 point
    Just an update on this: Due to some health issues I've had recently I've been somewhat required to eat gluten again in large amounts for the first time in about two years. I'm talking three times or more daily, with the vast majority of my calories coming from gluten products, mostly breads. It's interesting because at first I actually felt better than before (likely due to the fact my body can't handle a lot of the other healthier foods I normally eat and the fact breads are infused with B-vitamins which always seem to help), but after about two weeks I noticed I my health started to deteriorate like crazy. My body just started to feel clogged and lethargic, especially my eyes, but the biggest issue I've had has been mentally. My depersonalization symptoms have shot through the roof (visual symptoms not so much, however). I just feel completely mentally unstable, like the volume has been turned up to 10 inside my head, I feel anxious and on edge, almost schizophrenic, highly sensitive, and just like I'm stuck inside my brain rather than my body. It's crazy because I've eaten TONS of gluten in the last few weeks and as I said, at first I didn't noticed a difference, but as time went on it seems the accumulation of glutamate began to take it's toll. This same sort of pattern has occurred with other foods in my diet including nutmeg, nightshades and caffeine. I've posted about them here, but I find it interesting I can now add glutamate to the mix. All of these substances share a common bond in that they're essentially hyperactive drugs when taken in large amounts. I know there's a study (at least one that I know of) where gluten was removed from the diet of schizophrenics and many showed tremendous improvements to their condition. I also know there's a lot of cases where people from third-world countries without much access to gluten are suddenly introduced to the Western diet in the U.S. and elsewhere and immediately develop mental instability and in some cases have to be hospitalized. Anyway, this is just another in the growing list of foods that I would recommend people limit for the benefit of HPPD. It's not that you can't enjoy some pizza or bread or baked goods every now and then, but clearly if you make these foods a foundational pillar of your diet you're probably not giving yourself any chance at healing or even coping with HPPD.
  36. 1 point
    Back in the early 70s it was referred to simply as "burnout". Most recovered from burnout, some didn't. Strangely enough, out of all the people I knew who used acid heavily for a long time, I was the only one who reported hallucinations that never went away. Go figure. Then again, a friend of mine who just seemed burned out became dysfunctional and passed away quite young. I suspect he had hppd symptoms.
  37. 1 point
    I’m doing subcutaneous injections right on the front part of my hip. I find there’s very few nerve endings there. This stuff passes the bbb and if I’m being honest has a much broader effect than just localized. You can take it orally too but I figured injections would be more efficacious. Probably not necessary though!
  38. 1 point
    Broo pls xd u are fine you started recognizing symptoms after reading abiut hppd, right?
  39. 1 point
    That's excellent news! Having the visuals almost gone and CEVs reduced is huge. It took me a long time for my CEVs to vanish but they did. I'm not sure if my visuals are better of if they're just an integral part of me. Great to hear that you're doing better. It gives folks hope.
  40. 1 point
    Visuals are the same DP/DR is the same Anxiety is a little better Depression is all but gone (thank god) My coping mechanisms are well honed now... I can't say I ever have good days, but I do have ways to minimise really bad days.
  41. 1 point
    Had it for 6-7 years now. Definitely isn't as bad as it used to be. It definitely improves. My visual snow even went away. Does it still affect me daily? Yes, absolutely. Definitely not the same person that I used to be.
  42. 1 point
    Jesus man 48 years?? I dont think I even plan on sticking around if I cant find a cure for this.
  43. 1 point
    http://www.tandfonline.com/doi/abs/10.1080/15569527.2018.1423620 This could certainly explain mydriasis and a lot of the visual aspects of HPPD, but not all of course. What about DP, anxiety and all the other crazy mental stuff that goes along with it? I wonder if the nerve damage is widespread, effectively running from the eye to the back of the brain where other visual processing occurs. This could certainly explain the DP feeling of viewing the world from the far back of your head I guess...
  44. 1 point
    Wow nice find. This information needs to get out there
  45. 1 point
    Not quite the 60s. I first dosed in 73, shortly before my 14th birthday. After that first dose I noticed I'd get visuals from weed. As you may recall, back then, weed wasn't all that strong but you could get a big bag for $15 I dosed for a solid six plus years and stopped in 1980. I've had visuals ever since. Good to hear from someone who's had this for the long haul.
  46. 1 point
    In short, mostly the same thing anyone should do with serious health problems: eat whole foods, eliminate fast food, cut way down on added sugar and sugar in general, drink more water, fast here and there (as you point out), eat a balanced diet, etc. There are foods that specifically benefit brain health (turmeric, wild salmon, berries, nuts, a little dark chocolate here and there, tea, etc.) but as long as you're eating whole foods that come from the earth and not a factory you're gonna be alright. It's also important to not overdo anything. I've learned this the hard way, but essentially you can eat too much of anything and cause yourself problems. This is especially true for HPPD. In my experience aiming for a light ketogenic or paleo diet has been beneficial too, but again, following these sorts of trends religiously will only get you in trouble. They're best used as a rough guideline.
  47. 1 point
    New website is up. Needs some minor edits that are being worked on. The donation button won't be up until we acquire non profit status. Don't know what to make of the future but we are working hard at having one with HPPD being resolved.
  48. 1 point
    I first noticed symptoms when I was 14. I'm now 57. My primary symptom is visuals. I gave a descriprion of the visuals I experience in the "introduction" forum. Many of my symptoms have gone away except for the visual patterns. I don't think I have more anxiety than most and I'm certainly not depressed though I used to struggle with both. My visuals really haven't reduced over the years but I'm so used to them that they're just a part of my reality. Have I been able to live with it? Yup, I'm still here. Has my life been "normal"? Yeah, I guess so. I went to college, got married, raised two amazing kids, and work in a profession (I hope I'm not coming off as a pompous bozo). Most importantly, I'm happy and feel fortunate for every day I'm here. Are there times when my visuals are distracting? Yes! Are there times I wish they would go away? Yes! But I suspect for as long as I'm alive I'll have them. All I can do is keep moving and enjoy life. I hope I answered your questions. You can't go back and you can't stand still, if the thunder don't get ya then the lightning will. Robert Hunter
  49. 1 point
    Hello. This is my first post. I'm sorry for the length but I didn't want to miss anything. I strongly urge you to read this because maybe I can't help everyone but I know I can help people with this information. I used to visit this website because I was absolutly sure I had hppd. I experienced a bad acid trip approximately 6 months ago. I essentially had a panic attack mixed with acid and I thought I was going to die. When I came out of it I felt as if I couldn't feel emotion anymore. However, the next day I woke up and felt ok so I never did acid again but I continued to smoke weed. Now My health I would say had been someone deterioating over the last two years. Nothing medical (doctors find nothing wrong) but I just felt shitty. Tired, lethargic, no libido and just no enthusiasm. Now I was at a families for dinner and was staying over night and ate a big meal (many courses and desert). I experienced what was essentially the same feeling as when I did acid and was I started panicking and thought I was having a heart attack, stroke, brain aneurism, something of that nature. My dad took me to the hospital and they found nothing wrong with me other than slightly low sodium levels and told me that I just had anxiety and was having all the signs of a panic attack. I had never been much of an anxious person and so this both surprised me and unerved me. Now when this happened I worried that I was perhaps contracting a mental disorder and this is what it was like to go crazy from drugs. I spent my days as alone as possible going to school (I go to university in Canada) and them coming home and staying in my room. The worst was the feelings of what this website calls depersonalization and deraelization. I felt like I was living in a dream and wasn't myself. I also experienced bad versions of visual snow (seeing little blue and red spots especially in the dark. Now what I began to notice is that when I ate alot of carbohydrates I had symptoms of the panic,,,, and this is when I found it. I don't know if this is the exact medical reason but I discovered something called candida. Essentially it is a gut disorder that many people experience to varying degrees and mine was bad. The reason it causes these symptoms is that it has no harmful affects other than your body must fight to kill the infection that food causes when you have an overgrowth of this stuff (candida). If your like me your body has been fighting these infections from years and your body is just getting exhausted, particularly your adrenals. From what I've learned is that candida feeds on carbohydrates and any form of sugar. I began the candida diet which consists of only non-starchy vegetables (broccoli, spinach, zhuccini etc.), meats (not processed, my favourite being ground beef due to its cheapness) and then you can also use oils( ie. olive oil). I highly recommend you visit websites and research it yourself. I've been eating this way for approximately 2 months. The symptoms don't lift immediately but from day 1 you feel them lessening in degree. I have begun to feel so light and happy. I can't describe how amazing I feel. If I can help even one person lift from this hell and into the real world I will be happy but I hope that I can help everyone. Atleast try the diet out. The body at least in my opinion is not meant to eat all the carbs, dairy and processed food we eat. I wish you all the best and please post if you experience favourable or even unfavourable results.
  50. 1 point
    Great I'm glad some people are taking this into account. I wish you all luck!