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gotta say though, after dealing with this for 27 years and thinking i was all alone, its kinda uplifting to know that you guys have ups and downs with it too. been dealing with the worst symptoms have been in 7 years...the cycles come and go, kinda like having to ride out the waves in a storm. But seeing your lights out there too, going through the same storm...what we have is rare and not very well understood, but we arent alone in this. Raise your heads folks, you've made a difference in My life.

wishing the best for you there will be better days. Keep on pushing brother

hey friends!! its been awhile since i have logged in and posted, but i wanted to give an update on my hppd and my life. thinking back a few years when i first noticed my symptoms and how incredibly depressed i was, compared to where i am now is night and day. i have since transitioned and been sober for 6 years and i couldn’t imagine the joy and happiness i feel now. i still deal with some symptoms when i’m exhausted, slight static and maybe some shifts in shapes in my vision in the dark. otherwise though everything else is gone, and it all feels like a bad dream looking back. i’m thankful my attempt on my life was unsuccessful, i’m thankful everyday i stuck it out knowing things will get better. if you’re like past me in the depths of depression and anxiety and you feel like there is no way for things to get better, they will!! stay strong and be kind to yourself in your weakest moments. i am immensely thankful to jay1 for talking to me early on and giving me strength to keep going. I may not be active posting but i do read (serial lurker). stay strong everyone, things do get better. Take Care, Holly idea_10-20.wav

None of us are ok... I've had severe, life crippling HPPD since 1995. But there is a way of speaking to each other that just encourages conversation. Jumping onto a small, well intention post about not giving up to shout your agenda is just not the way the world works. As you can see, i haven't banned you and you are welcome to post whatever you want on here as long as it's not spam or causing extreme problems for others. I think creating your own post is the better approach. BTW - I have sent every bulk email request i've ever received via PM here... If it was emailed or sent to reddit, then it is more likely it went through the cracks, so always PM me here. Also note that people are actively doing things... lots of things... Damn, this forum costs me $45 a month and that's come out of my pocket for maybe the last 10 years now... That's $5k+ right there, just because I feel we need a "home" that is not as frenzied as social media. There are people here doing various things for various societies and research groups... I struggle to keep track of which is which, but people are actively trying to do things.

If that's what you got from my post, you're an idiot.

Hello everyone, it's been a long time since i've logged in, i was focused on organizing the world's first hppd brain study I have finished my meeting with the French Professor, head of the unit of the most famous hospital in Paris. He was sensitive to your suffering, and he decided to do the first research in the world on hppd brains, he has relations and links with great French and European neuroscientists. The Paris research center is the most high-tech research center in the world (Magnetoencephalography, Fmri 7 Teslas, Diffusion-weighted magnetic resonance imaging, they received the most powerful MRI in the world 11.7 Teslas) for the common good, the French professor wanted to integrate people from all over the world and expand the recruitment with Americans, Europeans, Australians and other people from all over the world. As I told a McConnell board member, The Professor requested and sent an email to Pr McConnell asking him to organize the research together, to merge and collaborate. Unfortunately for the Hppders of the world Professor McConnell did not answer and the study will be reserved for the French. As you know, my family is linked to the French government. This morning, we therefore decided that we were going to write a letter to the French Minister of Health (my cousin knows him) and ask him to have access to the research center in Paris to carry out the study. I am proud to announce that the first Hppd neuroimaging study will be done (Magnetoencephalography, Fmri 7 Teslas, Diffusion-weighted magnetic resonance imaging)

Hang in there my friend.

Yea, keep on fighting... I know you've been through the ringer lately, but you are a very strong person and will get through this

I've just been reading this article and, although unconnected to HPPD, it is a great example of never giving up hope for a cure. https://www.wired.com/story/brain-implants-that-help-paralyzed-people-speak-just-broke-new-records/ Imagine having the disorders discussed in the article. They must have felt all the same frustrations we do of having an uncommon, understudied disorder. Then a leap of faith and a technical leap cured both of them. Amazing! Keep the faith, you never know what is around the corner.

Hello! I'm making this post mainly because I want to help people who just found out they have HPPD and are struggling to find hope, mainly because most people who recover don't remeber to come back to say so (like i did haha) But yeah here we go: I did mushrooms for the first and only time 5 years ago, when I was 16. I had never used any other drug besides weed twice. The trip was awesome, one of the best days of my life, but things started getting strange 4 days after that, when I started feeling extremely sad and depressed for no reason. Then in the next day, a strong head tingling came along with some tinnitus, photosensitivity, after images, visual snow and an extreme anxiety and panic which I have never felt in my life. Those were so strong that I couldn't concentrate in anything and I all did for two weeks was laying on the bed horrified of what the heck was happening and researching about it (when I found out about HPPD). In the thrid week, the head tingling and anxiety started going away, but on the other hand I started getting some DPDR and more intense visual snow, and the first month was basically it. Then, I wasn't thinking I could ever go back to normal and I just stood 100% sober, tried to stay as healthy as I could and things did not get better, but I kept doing it anyway. Three months after the beggining of the symptoms, they started diminishing to the point I could make through some days without thinking about them, and 4-5 months after I got it I still had the symptoms, less intense, and I was already living my life totally ignoring it, and they were still there but not affecting me at all. It is hard to tell when exactly the symptoms went away 100%, probably between 7-8 months after I got them, but it was so gradual that I wasn't paying attention to them anymore. But basically that's it, I was talking to some friends some days ago about drugs and I remembered about when I had HPPD and how this forum helped me to feel better in a way that I was not the only one suffering from this condition, and I really hope you all can get through it. And also, I know that my case was absolutely not a severe case, more like a mid case, but I think a really important step in my journey was to stop waiting for the symptoms to go away and try to accept them and keep living my life. It is not always possible, but if it is for you, its worth it trying. So yeah, just wanted to share my story and that it's totally possible to recover.

You shouldn't speak for everyone. I have had a few positives from severe HPPD, namely it stopped me taking drugs when other friends moved on to heroin, they are dead, went to prison or living miserable lives now. Not many got out to a place of contentment. I also feel like I am more empathetic and in touch with nature and my surroundings. Probably more creative too, as I use creativity as a way to escape. HPPD is fucking shit, no doubt... but you can still have a positive mindset that benefits you. Don't let HPPD drown you.

This post has touched my heart. Honestly I felt way better knowing that there are official articles about this disorder and many people on this forum.

Hopefully gene editing will be our salvation.... Maybe AI can help with these more niche illnesses. I'm trying to arrange a qEEG in the next few months, so hopefully that will show something.

I don't know where you are based, but fuck that health care system. It's just such common knowledge that you cannot go from 6mg to zero that you may even have a legal case against them. Hope you are getting the correct help in the hospital. Keep fighting, Jay

My HPPD has defiantly decreased since getting it back in 2020 and I believe it still very slowly improves. As it improves in very small increments, it can be difficult to notice progress.

I've been on 1mg Klonopin for 5-6 years now and my psychiatrist gave me no choice but to star tapering me off, she cut my dose in half to 0.5 mg on day 6 I noticed pressure on my chest / anxiety for no apparent reason except withdrawal was starting and on day 8 I could no longer tolerate it and my VSS / HPPD came back full force and caused me even more destress as I had seemed to forget / not see in my face symptoms for years and now they are back, talk about flashbacks to the worst part of my life. So, I immediately increased my dose back to 1mg and my VSS /HPPD is still here a month later. I started doing research on day 7 and found out 50% taper was way too fast and dangerous and I no longer trusted my psychiatrist so I found the "Benzodiazepine Information Correlation" online and there was a Chemical Dependency Doctor here in Sacramento California and I went to see her and she is an angel and will work with me to slow taper off if that's what I want to do, and can take a year or two to taper somewhat comfortably in comparison to most taper programs , its patient led tapering program and she advised to me because of my withdrawal symptoms and VSS/ HPPD that I increase my dose to 1.25mg spread at .75mg in the morning and .5 in the evening to help me stabilize as I was feeling like I was dyeing and I felt like I was going to lose all the progress I've made in my life and I now have a family of my own worry about and take care of and I've been at that dose for two weeks now and my anxiety is stabilizing but my visuals remain the same except I just realized yesterday that I have stopped using my eyedrops that I have always used when I have VSS/HPPD symptoms because of extreme dry eyes I always used eye drops in the past when my symptoms were extreme before the Klonopin helped ad all of the sudden my eyes aren't dry anymore "hoping things will get better". while ok Klonopin for those 5-6 year my symptoms started to fade but they were still there but hardly noticeable to a point I just didn't care and I feel that if this Trama didn't just happen I would be able to stay on the Klonopin 1mg for the rest of my life because I used the same dose at the same time every day and never really noticed any kind of high from them after a couple months and I was not seeking to increase my dose because I felt I didn't need to because everything seemed to be manageable during that time . Klonopin helped me with VSS /HPPD , daily headaches and Migraines along with my agoraphobia, panic disorder, GAD, social phobia/anxiety. If I can stabilize and my visuals go back to hardly noticeable than I will do anything I can to stay on Klonopin because I have to be functional not only for me but for my Family. I had no symptoms or any bad side effects from Klonopin except some memory issues that were manageable and worth it for me.

So, I've stumbled onto something that seems to help...at least for me. My therapist suggested color therapy to help with ocular migraines from visuals. We have tried glasses with different color lenses. So far, we have tried: blue, green, rose, yellow, purple and a dark violet. Been wearing them for 1 month now and i have noticed some difference. Colors and objects seem to keep their shape better (less of the bleed over effect if that makes sense), and my family have said my mood seems lighter. I know it's a small thing, but small things add up. Just wanted to toss this out and see if anyone else has given this a shot. Opinions? Comments?

I’m in the same boat. I’m a little over 3 years into it and some days I feel like it’s almost over and others I feel like it’s hopeless. It happens in such small increments that it’s hard to notice, but I’ve noticed that sobriety makes the increments a little larger. Drinking is the least harmful in my opinion, but it’s still something I barely do as being hungover with HPPD is hell. I believe you’ll find peace and be rid of the symptoms soon, just take it a day at a time.

Hello,my story began one year ago.I still have strong symptoms,some decreased and some increased.My advice for you is stay strong,try to avoid alcohol when is possible,do sport,avoid caffeine and please search for other conditios because except this I have cavernous sinus thrombosis that they didn t see for one year and many symptoms are because of this.STAY STRONG.

I’m not a bro, I am a 45 year old woman and you actually made me lol. No kidding

.. I don't need the stress. Hopefully people still come here...

Case in point

Congratulations Holly. Hope is important.

Siren001, This is the first time I have read your posts and they literally make no sense to me. Like word salad. What are you even talking about? Also, stop being rude because it just makes you look like an idiot.

That is awesome. Massive congratulations!!!

Thanks for the post, it's great to hear these success stories! It really does seem like a lot of people who join do get better, to one degree or another, but having actual posts to back that up will really help any new sufferers that arrive here.

We have recently submitted our first work on HPPD to The Australian & New Zealand Journal of Psychiatry. An early preprint (already downloaded over 500 times) acknowledging the contributions of the foundation is available here: https://osf.io/preprints/psyarxiv/xeg96/ There are several other outputs in the works.

Yea, so sorry... Your way is working amazingly... I bet you've helped sign up £100,000s in research grants using the patented cunt approach.

I hope one day all our symptoms will be gone away

My general goal is to do what I can to help new people who visit here and try my best to stop very concerned people from killing themselves (dozens upon dozens in my years here, via PM). That's what I'M, doing with it... and hope plays a huge part in that and there is valid reason for people to be hopeful, especially new visitors who often recover. Btw - I'm not in charge of shit... I just help keep it running and help remove spammers.

Rather than coming on this post pissing on everyone's chips... Why not make a post about all the amazing things you are obviously doing to help the cause, maybe you'll inspire people into action.

Hey everyone, I'm doing just fine. I don't think of HPPD at all. Dreaming/sleeping is probably my only issue. I sleep fine for the most part, but have periods where I have lucid dreams and don't sleep well. I also feel like I wake up not feeling very rested, but hard to say if it's still some remnants of the mushrooms/thc. I will say I did buy an oz of weed months ago (too tempted) and tried it multiple times. It wasn't a great experience, and if I took more than two hits I would have very bad anxiety and felt loopy. So I got rid of it and don't have any desire to smoke again. Doesn't hit the same, for the best. So I had mild HPPD, it was terrible first couple weeks and I had to take off from work. I went crazy trying to find a psychiatrist to see. Never had visuals. I recovered pretty fully after two months. I assume recovery would be even faster/better with regular exercise. Didn't take any supplements. Just some time, keeping my self distracted from it, and quitting my THC addiction immediately. I'm probably more effected by stress now. There's hope all, if you are going through an unexpected hppd / psychosis, it'll pass in time. Keep yourself busy and don't think about it. I'm doing great and living a normal great life. Wish you all the best!

Was on lamotrigine 50mg and just after 3 days noticed a visual reduction of around 30-40%. Unfortunately I had to get off of it because I developed a rash, but this medication can be worth it to anyone else:)

Risperidone is an antipsychotic, and antipsychotics are generally bad for HPPD, so i wouldn't touch it. Antipsychotics are btw some of the worst psychiatric drugs there is, the list of potential side effects are almost as long as the bible and it's been seen that they with time actually decrease the amount of grey matter in the brain. Imo, any doc that prescribes antipsychotics for anything else than psychosis/schizophrenia, and in some cases bipolar disorder, should get their license pulled.

I believe that severe HPPD is the most agonizing non-lethal neurological disorder there is. It's pure torture, no quality of life what so ever.

They really are creating new patients... I don't want to imagine what would they tell to the subjects that got HPPD after the official session with psychedelics... I bet they would tell them that it's just anxiety.

Hi Alain, this does indeed sound like HPPD. It's good to hear that you have now stopped taking drugs, this is the most important step on the road to recovery. It also sounds like the support network in Netherlands is good. Finding people who know what HPPD is must be reassuring. Cosmic's advice is very good, so I don't have much to add.... but I hope your treatment goes well and just know that a lot of people do recover from this! Please keep us updated. Regards, Jay

Hi Alain, I'm sorry to hear about your struggles (your English is fine by the way, very clear). I would try and remain calm and know that you're doing everything you can to get better. Try to minimize the time spent researching on the internet as I have found this to be primarily a creator of anxiety. If you do have HPPD the best solution in my opinion is to learn the most effective way of managing your anxiety because as you probably have experienced, anxiety and HPPD symptoms are very much connected. There are very practical ways to manage anxiety on your own and I tell everyone the same remedy that worked for me: Stop all drugs, even alcohol for a while. Take it one day at a time, try not to think about the past or future just be here now. Keep yourself busy with healthy, productive things; hobbies, work, etc... Exercise even if it makes your symptoms worse Do the best you can to not focus on HPPD; minimize time spent online looking into it and time thinking about it (this tends to generate anxiety which is not helpful for us) Try not to feel guilty, you didn't ask for this. Try learning to meditate, even if it's just for a minute or two. We all have the ability to go inward for strength and healing. For example, you can spend 30 seconds or a minute sitting and noticing your breath and thinking the following: when I breath in I notice I am breathing in when I breath out I notice that I am breathing out and I smile because I am alive. It's that simple! Try and get as much sleep as you can. If you're open to it, pray to God in whatever way you think is appropriate. You don't even have to believe in anything, just ask for help and see what happens. I personally believe that we all possess a spring of internal strength that we can call upon. Your life is not over and recovery is always possible we just have to let it happen. Over time, things will get better but try not to ask yourself daily "am I better or worse today?". You'll find that recovery happens over the span of months and is hard to notice day to day; think of physical growth when you were a child. Hang in there. If you'd like to chat on WhatsApp send me a DM. Take Care, Nick

Hello! My name is Amelia and I am a documentary producer. I am currently researching for a documentary about psychedelic substances and their impact. I am looking to speak to young people who have used psychedelics and have been impacted by HPPD - ideally in London but interested to hear from everyone. This is just for research purposes and all conversations are confidential. If you are happy to chat about your experience, please get in touch by direct message or WhatsApp me: 07974080445. Thanks so much! Amelia

My view is that is you have to sort of force it to happen by staring and zoning out, it's not hppd. But it does perhaps show you are susceptible to hppd in the future, if you take more drugs. Try not to live with regret about your drug taking... Regret is only useful to stop you doing something again, you've already come to that conclusion, so further regret is just hanging on to negative energy. Try to frame it in a positive way... You experimented with drugs, like most people, and came out of the other side without addiction and with a life lesson learnt.

I don't think you can even think about a baseline until you are out of withdrawals, tbh. Where you are at now is not your baseline, it's far worse. In many respects, this is probably as bad as it gets for you (hppd wise), which is gonna be tough and hellish for a while to come, but you are also now taking day by day steps to returning to your actual baseline, which should be quite a lot more comfortable and manageable than where you are right now.

I'd say that stress is second only to drugs in terms of making the symptoms permanently worse. People think of stress as just being over worked or whatever, but it comes in many forms and is chemical based. As a severe hppd sufferer, your body will be under more stress than the normal person, no matter what you do. Then when a stressful life event happens, we get even more overloaded with cortisol and adrenaline. Have you ever tried beta blockers? I find they take away some of the psychical symptoms of hppd (they do absolutly nothing for the mental side though).

Mate, calm the fuck down... This is not how we speak to each other on this forum, go to reddit if you wanna act like this. Question, have YOU tried it?

That's fucked up ... I can't even wrap my head around the situation. It's just outright negligence. I hope you are able to get some rest and tackle this again tomorrow.

Yes it's amazing! we will locate precisely the areas of the brain that are dysfunctional !

Yes i did, i will post the results !

Hang in there my friend.

Researchers at Johns Hopkins are conducting a survey to better understand the experiences of people with HPPD (Hallucinogen Persisting Perception Disorder). HPPD is a condition where people who have used hallucinogenic drugs experience ongoing visual disturbances, such as seeing halos around objects or seeing colors more vividly. This survey will ask about risk factors, symptoms, treatment experiences, and how HPPD has impacted your life. Your participation in this research study can help improve our understanding of HPPD and lead to better treatment options for those who are affected by it. www.HopkinsPsychedelic.org/hppdsurvey Protocol: IRB00384491, Principal Investigator: Natalie Gukasyan, M.D.

Thanks for checking in and letting us know the progress... Very happy to hear you are feeling better! I say this a lot, but it really does feel like most people who come to this forum tend to get a fair amount of the way back to a full recovery within 3 months of their first post. It gives a lot of hope for people. I hope you can stay away from smoking weed again... Trust me, there is nothing more boring than being mentally ill for years/decades. Hollywood makes it look interesting and glamorous , but that's so far from the truth. Not being able to do the simple things that people enjoy in life is very, very tedious.

This still going on? I think it's a great idea. Hell I would be thrilled if you made a ton of money because all I care about is getting this disorder in the public eye more. I think research into HPPD could be the key to understanding a wide variety of disorders and afflictions from alcoholism to autism to ADD to traumatic brain injury to post traumatic stress disorder.