K.B.Fante

You're going to find what you're looking for if you look hard enough. I didn't read anything in that article that was convincing, and of course that's only one person, so I'm not sure it's wise to jump to conclusions based on a single article on the Internet. Many here know SSRIs aren't as safe as they're marketed to be. I have anisocoria from a week on Lexapro. It's gotten better over time but it's still there. I imagine in a few years it might not be noticeable at all. We all have scars of some sort from this terrorizing disease. Until scientific studies are conducted on visual snow and it's relation to the retina I have no reason to believe there's a substantial link. All current evidence still points to this being a brain problem and I firmly believe that as well given everything you can read on this forum and others, in addition to studies and the opinions of those who know much more about HPPD and the brain than most of us.

I don't think anything can help with withdrawals but there's all sorts of information on this site about ways to cope. I think just as long as you do it slow you should be OK.

Also, here's that study about tinnitus and TCD: http://journal.frontiersin.org/article/10.3389/fneur.2015.00124/full The second sentence states, "TCD is characterized by a slowing down of resting state alpha to theta activity." According to BrainWorksNeurotherapy.com, "Theta brainwaves occur most often in sleep but are also dominant in deep meditation. It acts as our gateway to learning and memory. In theta, our senses are withdrawn from the external world and focused on signals originating from within. It is that twilight state which we normally only experience fleetingly as we wake or drift off to sleep. In theta we are in a dream; vivid imagery, intuition and information beyond our normal conscious awareness. It’s where we hold our ‘stuff’, our fears, troubled history, and nightmares." Learning and memory problems, withdrawn senses, disconnection from the external world, focused on signals from within, feeling like you're in a dream, the place where we hold our troubled fears and nightmares -- sounds an awful lot like DP to me.

Man, that's one hell of a run-on sentence. Sounds like you're struggling. Why won't your doctors just let you remain on Clonazepam? What's been their reaction when you tell them how bad your symptoms are? If I were you I'd try and stay on since it sounds like it's been a life saver but if you have to taper off just remember to do it really slowly and have a backup plan like a therapist, exercise routine, healthy diet and so on to make you feel good.

Curious if anybody's had success, not only with HPPD but their health in general, through the practice of "earthing." Basically earthing supposes that our bodies have evolved over millions of years to be connected with the earth and that our sudden disconnection through rubber shoes, indoor flooring, sidewalks, sleeping on beds, etc., has led to a disconnection from this natural electrical field and is causing all sorts of potential problems, including inflammation which is at the root of many modern diseases. Here's an NCBI study from about five years back that gives a pretty informative overview: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265077/ I guess I just figure with the potential connection to thalamocortical dysrhythmia and tinnitus, the connection between tinnitus and HPPD and the fact neuro-electric brain waves are already proven to be malfunctioning in people suffering from a wide range of mental illnesses, that perhaps earthing could provide some sort of reset for our brains. I've been trying to spend at least half an hour a day outside on the grass and have definitely felt an improvement in my symptoms, but then again I'm doing lots of stuff that could be attributed to my recovery so it's hard to say. Has anybody spent lots of time outdoors, camping, on the beach or waling without shoes and noticed any sort of improvements?

Nice! Let us know if you need help with anything or have any paid positions as research assistants.

"XEN1101 acts as a neuronal Kv7 voltage-gated potassium channel opener, which has been developed to stabilize nerve cells, control action potential burst firing, and reduce brain hyperexcitability as a treatment for seizures." All three of these targeted areas have potential links to HPPD so this is encouraging. Plus, anticonvulsants seem to have a pretty good track record in this community so even if it's not perfect perhaps it can at least provide some relief here or there.

I recovered from visual snow earlier and I have great faith I'll recover again. People with HPPD recover all the time, and that includes visual snow and other symptoms that are even more severe. It just takes time. This isn't something you wake up from. It takes years in most cases. As long as you live a healthy lifestyle, eliminate anxiety and give yourself time you'll stand a good chance at recovering someday.

Ever since getting HPPD I've always wondered if that's what happened to Syd Barrett. I did a bit of research a while back and there's certainly some interesting parallels. For example, even though he was doing lots of drugs it sounds like Barrett had an instance where everything changed, where he came back from a long weekend of doing drugs and was just totally different, staring deeply into space and not really being tuned into reality. These patterns align with HPPD (I remember staring was a huge problem of mine when I first got HPPD, as I almost felt I could trip out when I just let myself go), however Barrett was clearly severely mentally ill in other ways that don't necessarily align with HPPD. He did stuff that everyone with HPPD would never do and seems more along the lines of schizophrenia -- same goes for Brain Wilson. Now, whether they had some aspects of HPPD is another story. I don't doubt for one minute plenty of people from that era came down with some form of HPPD symptoms they never recovered from.

May 8 will be my two-year anniversary of taking the LSD that gave me HPPD. I remember when I first got HPPD thinking the acid was just hanging around in my system, sorta like a hangover, and that I just needed to give it a few days and it'd be gone. Then days turned into weeks and after two weeks I started to get a bit concerned. I saw a local therapist who had no clue what to do with me and then I eventually saw a psychiatrist who tried to help me with meds which didn't work either. I remember, despite being in a completely surreal 2-D world that resembled a video game more than real life, that I was always hopeful. I thought even though meds didn't help me that there was no way I was going to let this condition beat me, that I'd recover by the end of the summer. Then the months just kept adding up, one after the other after the other. I thought at first six months would be more than enough time to heal, then nine and then a year passed, and now here I am at two years. And I just can't believe it. I truly look at the last 24 months and they seem more like a dream than real life. But perhaps this is because, thanks to DP-DR, it's as if I've been living in a dream every day. I even remember when I first got HPPD actually thinking I was dreaming when I was awake -- that's how bad it was. I've had classic HPPD symptoms this whole time: palinopsia, visual snow, DP-DR, brain fog, tinnitus, etc. Some symptoms, however, are far worse than others. Even though my snow is still fairly prominent I hardly care about it. It's the DP that's the worst, without question. Anybody who doesn't have DP symptoms should be thankful because I'm here to tell you it's a nightmare. I've also had terrible macropsia where objects that are closer appear bigger and my eyes can't really focus on them without getting double vision. Thankfully after two years I've made more than enough progress to be in a position where I can cope day to day, and in general I'm able to go about my day without thinking too much about my condition. When I first got HPPD I literally couldn't go a few minutes without noticing something. Human-to-human interaction was always the worst because not only did people appear lager and more surreal, but my brain couldn't handle back-and-fourth conversations, much less witty banter that I consider the foundation of my persona. I truly can't imagine anything more traumatic than going through severe HPPD. Trauma comes in many different shapes and sizes, but it's the severity and length of HPPD that makes it so unique. Even though I've recovered tremendously since first getting HPPD, even though I've run hundreds of miles, done everything in my power to stimulate my brain, entirely altered my diet and health, read numerous books on brain science and general health and recovery, and prayed to God even though I'm agnostic, it's just no match for HPPD -- not one single bit. And so I've often thought: This is not something we were ever meant to simply get over, to simply heal from after a given amount of time. This condition, whatever it is, is completely and entirely ruthless and stubborn and unrelenting. It just seems like a monstrous boulder that you can't move no matter how hard you push. Whatever it is that's gone wrong in our brains is really, really serious and really, really bad. Not knowing what's gone wrong inside your head and not having anybody to help you or tell you how to heal is a complete health nightmare, on top of the fact that it's so terribly difficult to cope with this condition on a day to day basis. I tip my hat to those veteran HPPDers who've dealt with this for decades. You poor souls are some tough sons a bitches and will likely never get the credit you deserve for having fought this day after day, month after month, year after year -- but I salute you, as do many on this forum. The phrase I keep repeating to myself right now is "I just can't believe it." I just can't believe this happened to me. I can't believe I'm still alive after everything I've been through. I can't believe this was possible in the first place. I can't believe, after two years, that I still have a long ways to go. But the good thing is I'm finally in a place where I can handle this condition. No, I'm not "recovered," but I've healed a lot and though I still have a ways to go I feel I'm finally over the hump, that it's mostly downhill from here even though I'll still struggle and have tough days. I guess after years of giving myself time to heal and understand what I'm dealing with I finally know. I'm one of those people who will take years to recover, maybe three, maybe five, maybe even more. But I still have faith, just as I did the first day I woke up in a totally different reality, that I'll one day be me again. In closing, I'd just like to say, to all those who are in the darkest place imaginable, darker than anything you ever even thought existed: keep fighting. Keep going. Don't stop. When you stop, you die, maybe not literally on a macro scale, but certainly inside, somewhere in your soul or deep inside your brain. I've been there, as have so many others with this condition, and I'm here to tell you life goes on. It gets better. And given the seemingly exponential development in brain science, you should have more hope than ever that someday soon we'll get treatment. Perhaps no cure for a while, but I have great faith we will be anonymous no more, that we will soon see our day in the sun. Sending love to all those who are in pain, Keep fighting and never give up, It will get better, It will get better, -- K.B.

This is so interesting, especially considering I've been basically pushing this theory -- right or wrong -- the last few months. The way Dr. Teichberg explains it is exactly what I've been envisioning could happen -- again, right or wrong. The fact is, no matter if you have HPPD, DP or VS there are a few common bonds that absolutely cannot be ignored: 1) Anxiety. It's far too common to dismiss. It's not like a few people with HPPD and VS have anxiety -- it's the vast majority, far more than is common in the general population. 2) Trigger. Though there are reports of people who's VS symptoms come on slowly, these seem to be in the minority. In general people with HPPD, VS and DP have some form of incident (panic attacks) or agent (often times drugs) that acts as the damaging factor in giving them their condition. There is a clear before and after. 3) Healing. While some people do not "recover" it appears a vast number of people make their way back to a state of normalcy by a process of healthy living. Sometimes it takes many years, but what can't be denied is that a clear recovery is taking place. When you consider all of these factors I just can't get past the idea that we aren't experiencing some form of cerebral injury. I really firmly believe accepting this fact will go a long way in bringing about change to this community of sufferers. We are not people who are imagining these symptoms. We are not crazy. We were not always mildly schizophrenic and then became full-blown mad as the result of a few drugs. I really believe we have suffered some form of an injury and that what we're dealing with is far more neurological than a commonly cited DSM condition. If I leave one mark on this site and on this condition I really hope that this is it.

I'm convinced the limbic system is tied to HPPD one way or another. The posterior cingulate, insula, hippocampus, amygdala, thalmus -- they're all in close proximity to each other in the brain and seem to pop up repeatedly in HPPD, DP and Visual Snow studies. The brainstem is where the nervous system derives and given how many people with HPPD, DP and VS have trouble with anxiety I don't think it's crazy to imagine some sort of nervous dysfunction is the root cause of many of these issues. Recently I read up on the cranial nervous system and especially the optic nerve and oculomotor nerve, both of which have interesting ties to HPPD. Damage to these nerves can result in diplopia (double vision, which I and many DP sufferers have), mydriasis (pupil dilation, which is an incredibly common HPPD symptom), difficulty with accommodation reflex (being able to shift from near to far objects, which I have) and so on. Given what we know about LSD's ability to connect different, far-away regions of the brain but also to halt blood supply to others, I don't think it's too far fetched to suggest ischemic stroke in some part of the limbic brain as a possible culprit of HPPD. Of course, this is all just pure, random speculation. I think it's fun given nobody in the medical field seems to be particularly keen on figuring out what's wrong with us. Also, not sure if anybody's seen this yet but it's interesting and relevant: https://www.newscientist.com/article/2119397-how-lsd-affects-the-brain-and-creates-its-trippy-effect/ I'd be really interested to see how someone with HPPD reacts to ketanserin. Whether it be good or bad, it could tell us a lot about whether the 2A receptor is involved.

I honestly think one of the biggest problems in bringing awareness to this condition is that there's at least three different groups -- HPPD, Visual Snow Syndrome and Depersonalization-Derealization -- all of whom have very similar and overlapping symptoms yet all of whom are mostly unaware of the other and convene in different parts of the Internet. If you combined all these communities together there'd be a much larger, single group that could do a much more effective job of bringing about awareness and funding as everyone would be working together. There's some really smart people on the DP forum and same goes for here and I'm sure many other VS pages. It's just that everyone is so scattered, even within their own communities, and so it's difficult to have a movement or revolution when there is no unifying party.

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.

Usually HPPD is accompanied by a variety of visual disturbances so if you're just feeling cut off from the outside world, emotionally drained, empty, etc., then you might just be feeling the effects of all the drugs you've been taking. You should really try and cut back, even go as clean as you can for a month or so and see how you feel after that. If you're already feeling depersonalized I'd stay as far away from drugs as possible if I were you, especially hallucinogens. Your mind and body are telling you to lay off. It's best to listen in these circumstances.

I've tried tyrosine, rhodiola and theanine, which I've read can increase dopamine, but this was a while back when I was throwing all sorts of different drugs at my body so I didn't get a good idea of whether they worked or not. Also, I think SAM-e might increase dopamine. That was the one med I actually felt pretty good on. I've just been so sensitive to drugs I haven't stuck with any aside from supplements. I'm much happier with going slow and recovering using nutrition.

I wish someone had told me how long this would take right off the bat, so I'll just advise you to not get too excited about it dissipating over the next month. The truth is if you've had it for seven months you'll probably have it for a long time. Maybe another year, maybe two or three, who knows. But this condition doesn't disappear overnight. Just stay away from drugs, eat healthy, exercise and you give yourself a great chance at recovery.

Hate to keep repeating it but this is yet another instance where HPPD and Visual Snow symptoms are tied to some sort of injury. This is without question a reoccurring theme in many of these studies. I've always felt better on substances that promote dopamine and it seems pretty popular in this community. If I remember correctly I think Dr. Abraham even suggested dopamine receptors could somehow get destroyed after ingestion of hallucinogens. I've taken a few supplements that supposedly boost dopamine, never any pharmaceuticals, and of course altered my diet to allow for more vitamin C which is an antioxidant especially beneficial to those with neurological disorders and one that helps promote the production of dopamine. Sometimes when I eat an orange I even get a little bit of a natural food high!

Honestly, I'm not sure what to tell you. It sounds like you have a severe form of HPPD (I had similar symptoms as you for the first few months before they started to fade) wherein CEVs are your strongest and most disturbing symptom except they occur when you're awake, from what I gather. You have to keep in mind that though there's a general list of common HPPD symptoms almost everyone has a different experience with this condition and many of us have symptoms that seem almost unique to our own personal brain malfunction, as appears to be the case in your scenario. For example, I have severe macropsia. Though there have been a few others who've reported this symptom I've yet to come across anybody who has it as bad as I do. I literally couldn't even see my hand (it was too blurry and big) if I put it a foot in front of my face when I first got HPPD because my macropsia was so bad, and to this day my hand appears completely blurry if I put it a few inches from my face. It sounds like you've seen quite a few doctors and been on your fair share of meds, so I'm not exactly sure trying out more medication is the best route. Is there anything that's made your symptoms better? Perhaps a time when you felt happier throughout all this? One thing that's helped me is to constantly take inventory of my emotions, HPPD symptoms and body in general to see what makes me feel better and worse. It's taken two years but I have a long, long list of things that help and things that don't. It really makes life easier to navigate when you know what to do and what not to do, especially with regards to eating.

Here are the links to the visual snow studies mentioned in the video above: 'Visual Snow' -- a disorder distinct from persistent migraine aura https://academic.oup.com/brain/article/137/5/1419/334357/Visual-snow-a-disorder-distinct-from-persistent Visual snow: A thalamocortical dysrhythmia of the visual pathway? http://www.jocn-journal.com/article/S0967-5868(15)00653-0/abstract Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography http://www.pnas.org/content/96/26/15222.full Thalamocortical Dysrhythmia: A Theoretical Update in Tinnitus https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4460809/

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.

Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:

I have negative afterimages too, but mostly I only see them when I look at bright objects (the sun is the worst) or high-contrast settings (like a black tire against a white wall for example). Thing is, these have gotten better at the same rate as all my other symptoms, so clearly they're all tied together, which would make me think they're more brain related rather than retinal. I know light sensitivity is a common symptom of quite a few neurological disorders.

Thanks for this Sara. I hope people donate. We can't all sit here and complain and then when we have an opportunity to do something just turn our heads the other way.

I always thought it weird how many of the symptoms you experience while tripping are the same ones we end up stuck with after getting HPPD. If you look at the questionnaire scores from that study they're basically a list of HPPD and DP symptoms, and yet they're also supposedly the feelings one gets while high on hallucinogens. Also, I find the graphics in that study showing electrical activity inside the brain while on LSD quite interesting. The occipital lobe seems to be most active and this is also where visual snow hypermetabolism occurs and where some people with DP have shown lesions. As I've mentioned in a few posts, I had a really intense sensation of being sucked to the back of my mind while tripping, and that's also a DP symptom as well (seeing the world from the back of your head). I dunno, just seems like there may be something there...