Alex123 Posted November 5, 2024 Report Posted November 5, 2024 Hello everyone, My name is Alex and I consider myself recovered, or at least sure of being recovered in the near future from a set of symptoms that would be characterized as HPPD under the official DSM-5 manual. I hope everyone is well and is doing their best to find hope in the challenging position they find themselves in. Once I started being serious about my recovery I told myself I would never come back on this site until I felt recovered/confident enough that I had overcome this and could tell others a bit about my healing journey to offer hope and help to people who are struggling like I did. In March-June of 2022 I experimented with mushrooms a few times. I had taken acid a couple times in the past and smoked weed and drank heavily for a few years of my life. I’m also pretty sure that I had accidentally smoked spice on a couple of occasions. I am now of the firm belief that whichever substances you took, how much of them you took, how long after you took them, etc. is not of any importance as to whether you can recover or not from HPPD but when I was really struggling the onset and what caused everything was something I definitely obsessed over. Anyways, a few weeks after I took the mushrooms (it was an anxiety-filled, but not overwhelmingly horrible trip) in early August 2022 I started getting symptoms very quickly and in full force. Within a day or two, I went from normal and seemingly happy with life to having - Visual symptoms of HPPD (visual snow, floaters, bizarre color saturation of things in my visual field, the world looking like it was made of plastic, unreality, insane closed eye hallucinations that scared me beyond belief (spirals/colors/weird shapes and forms), everything just generally looking oversaturated/different/strange/scary, vision altered in ways that difficult to describe, etc. etc.) - Severe psychosomatic pain in the body (foot pain, severe headaches, feeling like a knife was stuck in my chest all day) - Extreme fatigue and insomnia - A constant sense of doom, fear, helplessness, and being trapped - Severe anxiety and suicidal depression, with frequent panic attacks - Others that I’ve probably forgotten After a few weeks of these symptoms I truly believed my life was completely over and there was no way out of my suffering. Based on all of the online “research” I did on HPPD I had concluded that my brain receptors/function was irreparably damaged by the drugs and there was no hope of fixing it. I was attending a prestigious professional school at the time but due to COVID constraints luckily my workload was no more than 2-3 hours a day but I was barely making it through. I would barely sleep most nights laying in bed surrounded by crazy visuals and intense pain and fear. My parents and girlfriend were taking turns watching over me at night in case I tried to end my own life. In a word, it was completely fucked. I had a psychiatrist caring for me who prescribed me Prozac, then Klonopin, then Gabapentin, then Hydroxyzine (to induce drowsiness before sleep), told me to take high doses of ibuprofen for the pain in my body, then quietapine when all the other drugs were barely working and I was getting more and more hopeless. After a few months of this and my own research I came to the conclusion that Western medicine, psychiatry/neurology, even psychology will not ever solve my issues and I completely gave up on them and stopped trusting them hereafter, which may have been the best decision I made. The truth is the brain is the most complicated structure in the universe and even the most intelligent scientists are nowhere near understanding how it functions on a molecular level – to think that we are anywhere close to having drugs that can “target the receptors” that are responsible for HPPD in the brain is such a laughable preposition I can’t believe credentialed people who received advanced education and degrees truly believe in this kind of stuff. Luckily, as I discovered that there are alternative routes to fix yourself without relying on anything external to yourself. After I went to my PCP, got my blood tests and they came back clean, and I got an MRI with a neurologist of my brain to ensure everything is structurally sound I left western medicine and stopped seeking answers from them entirely. I strongly suggest that if you are cleared by a doctor on these fronts you should stop looking from answers from them as it will only feed your anxiety. Well, after a few weeks/months of this I realized that it couldn’t go on, and that living that way was no way to live, and that the choice was either end it at all or get better so I swallowed my pride and accepted that I would have to make a serious attempt to get better no matter how long it took. The choice is obvious so I started seriously researching how to get out of this instead of doomscrolling, self-diagnosing, and trying to prove to everyone and myself how unlucky and hopeless my situation was for hours on end. For everyone who is still in that place I do not mean for this post to sound harsh or judgemental – trust me I was there myself and I completely understand how isolating and scary it can be – I just mean to say that in order to put yourself on the right track you have to take a stand and let all of your unhelpful behaviors go. Letting go doesn’t happen overnight but you can always start right now. There were so many stages in my recovery that I can’t possibly give all of the stages and helpful information here, especially as each person’s recovery is very personal. This is not to say that recovery is complicated – it is actually so much more simple than I was making it and most people think, but it just takes a while and multiple ways of understanding/saying the principles before it finally clicks and you begin to trust you can get better. Please give yourself as much time as you need to recover and do not put any pressure on yourself. The weird thing about the mind is that the more you want to recover and the more you insist on it the more stress you generate and the more you prolong your recovery. Be gentle with yourself and treat yourself with a lot of love, but be firm with yourself when you notice yourself wavering. However, I would like to offer everyone a list of things that is important to keep in mind: 1. You are not a special snowflake. It doesn’t matter what exact symptoms you have, whether you’ve labeled yourself as having HPPD Type 1 or 2, or visual snow, or palinopsia, or whatever other fancy name you’ve come up with for you set of symptoms, whether someone else on a forum has the same symptoms as you, what triggered your symptoms, how many drugs you took and which drugs they were, how long you have had your symptoms, etc. Recovery doesn’t happen by ruminating on the past, or by labeling what’s going on endlessly, it happens right now in the present. If you have some mixture of anxiety/depression around things you have in your visual field or feel in your body you must let go of the storylines you have built up about what symptoms you have and why they are worse than other people’s, etc. and trust that if other people have recovered, so can you 2. HPPD is not a real “condition” like cancer or heart disease. Everything about your body is structurally sound so long as your PCP has cleared you and you have even gotten a brain image like an MRI (even this can be overkill, but if you can afford it I would do it just to assure yourself. Any imaging further than this would be a waste of time and would feed your anxiety) You must let go of the label of “having HPPD” if you hope to make a recovery. It is not a real condition but only a set of psychosomatic symptoms that is kept alive by obsessing over them and feeding your depression and anxiety over them 3. HPPD is not caused by psychedelic drugs, psychedelic drugs can be a powerful experience that triggers latent emotions, fears, obsessions that you have been avoiding for your whole life. Do not blame drugs for causing the emotions you have built up inside of you throughout the course of your life and trust that you have the capability to face, feel, and overcome the power of these emotions 4. In essence once you work on recovering from your depression and anxiety your “HPPD” visual symptoms will either go away or not bother you any more 5. You must understand that fear is a choice, and in each and every moment you have the choice to choose something other than fear. Do not concern yourself with past moments in which you remember suffering and being scared and also do not concern yourself with the possibility that you may not recover or that you will suffer in the future. The truth of the matter is that when you are struggling with a condition like this it has become automatic for you to choose fear moment by moment and you will have to make a conscious effort in each moment to choose something else. 6. Conditions like HPPD, Chronic Fatigue Syndrome, Long Covid, PTSD, OCD, Anxiety/Depression, and “chronic illness” (when used to describe psychological disorders) are all much more similar, and more simple than “experts” make them out to be and they are kept alive because you are afraid of discomfort. This is obviously completely normal and not something to fault yourself for, but, paradoxically, to recover you must stop obsessing over how you feel and continuously trying to make yourself feel better. Surrender is key. This condition can be an enormous source of personal and even spiritual growth so instead of being jealous of others who are living “normal lives” you can be grateful that you have an opportunity to become a far better person than you ever were before this happened to you. One aspect of this is becoming comfortable with discomfort. In fact, a very simple practice that helped me immeasurably was checking in with myself throughout the day with a simple question “Where do I feel discomfort right now in my body?” or “What in my visual field is bothering me right now?” or “what am I avoiding/wanting to go away right now?”. Then, instead of thinking about how terrible my situation was, I would ignore my catastrophical thoughts and put my attention right on the discomfort, or right on the visual experience that was unpleasant, just for a few moments. This can be seen as an act of love – giving attention to sensations, feelings, visual experiences that you have been actively avoiding, hating, or resisting for a long period of time. You can see your visuals and your bodily discomforts as little children who have been left crying and need love in the form of your attention and acceptance. If practiced for a bit this can bring a lot of relief. 7. In line with the above point, so long as your physical health is cleared by your doctor, stop seeing pain/discomfort as an alarm signal to run away from. Change your orientation – from now discomfort will be a signal that is telling you: “look here”. You may not have control over whether your symptoms are there, but you do have control over how you respond 8. Start watching what your thoughts say throughout the day, and stop believing what your thoughts say. This may be the most important skill to learn. During my worst times with this condition, I would have hundreds of thoughts a day that said “I am suffering unbearably for no reason”, “I am the unluckiest person in the world”, “I can’t bear my visual changes any longer”, “What if this goes on forever” etc. etc. Stop believing all of this nonsense. Learn to create some distance between yourself and what your thoughts are always telling you. It takes practice but it can be done. After a few minutes of approaching your discomfort, and ignoring what your catastrophic thoughts are telling you, you will start to get thoughts that are more sneaky. “This will never work”. “Nothing is happening”. “I’m still suffering”. Ignore those too and continue to build your faith in your recovery. Do it again and again until it begins happening. 9. Put your trust, or faith in yourself, and the universe that your natural state of being is happy. It takes time to build this trust or faith but the more you trust your body, the world, and life the easier and easier your recovery becomes. Your body is endlessly intelligent and can and will heal itself- you just need to get out of its way 10. Stop measuring how far along you are in your recovery, constantly checking in to see if you’re making progress, etc. Just focus on the principles, on responding properly and not catastrophizing, and let your body do the rest without your input and analysis The above points were truly cornerstones of my recovery. By practicing, acknowledging, and reminding myself of the above, along with many other resources I finally convinced myself that I could recover and am well on my way to. I went from utter and complete hopelessness, suicidality and pain to now 2 years later living a “normal” life, treating patients at work and spending time with family friends but with a far greater sense of gratitude for even mundane situations in life. I still have mild symptoms at times but the amount I spend thinking or even acknowledging them throughout the day totals less than a few minutes. There is a lot more I can say about this topic but there is too much for one forum post. I would just like everyone to take away that I truly believe that recovery from this is possible for each and every one of you and I truly believe that once you learn the right principles about how this condition and your mind/thoughts in general work it is only a matter of time before you recover, although you certainly must have a bit of patience because it doesn’t happen overnight. I truly hope that this post can help some of you who are currently in a dark place and tell you that you can live a normal life again and that you are closer than you think. I also want to point out that my recovery has taken on a very meditation-heavy and spiritual side which I think can be very beneficial, but is certainly not necessary to make a recovery. I found that meditation helps focus the mind and helps you not be as swept up with catastrophic thinking and obsessing over your symptoms. I would definitely recommend starting a meditation practice for anyone looking to recover from something like this. Lastly, please don’t be discouraged and think that this is too much for you to do, or that you can’t do this because it’s too difficult or complicated. This is truly a process, and often a life changing one and give yourself as much time and space as you need to undergo it. It won’t happen overnight but nothing good or worth having ever will. You always have the choice to begin right now. Some of the following are some Youtube videos/channels and books that were of immense help to me: - The Brain’s Way of Healing by Norman Doidge - The Power of Now by Eckhart Tolle - Awake: It’s Your Turn by Angelo Dillulo*** - this book especially is very useful for learning how to deal with difficult thoughts and emotions - The Mindbody Prescription by John Sarno - Illumination by Rebecca Li https://www.youtube.com/@twopaths – Two Paths is a channel from a man named Jay who actually was diagnosed with HPPD but proceeded to find a way out of the condition https://www.youtube.com/watch?v=zCT3wcoZ9ds – Sadghuru has a lot of good content on regulating your mind and emotional state https://www.youtube.com/@cfsrecovery – Miguel Bautista’s Youtube channel in which he talks about recovering from Chronic Fatigue Syndrome but every single one of the principles apply for HPPD, simply substitute “HPPD” for “CFS” when he talks https://www.youtube.com/@RaelanAgle – Raelan Agle recovered from CFS and posts success stories from people who did as well. Once again, HPPD recovery is pretty much exactly the same as CFS recovery so don’t let these arbitrary labels and “differing symptoms” stop you from using this resource https://www.youtube.com/@life.withkyle – Kyle is a guy who recovered from Long Covid and shares his experience, which is on the spiritual side but very helpful Good luck everyone and I am wishing you all of the best in your difficult and disorienting time.
Jay1 Posted November 5, 2024 Report Posted November 5, 2024 I can't say I agree with much of your post, HPPD is neurological, not psychological... but I appreciate the sentiment and some of your tips will work, regardless.
Alex123 Posted November 5, 2024 Author Report Posted November 5, 2024 Hey Jay, I hope you’re doing well. I certainly don’t mean to start an argument about this because that’s not helpful to anyone but I just want to share that a key element for me was letting go of viewing this condition from a neurological standpoint. I believed HPPD was a neurological disease for a few months and I felt nothing but hopelessness and doom. If the psychedelics damaged my brain, and now there was a “neurological” problem, I had no power to fix this myself, and none of the doctors have a clue either since research about this disease is in its infancy. I was doomed to suffer, and be mentally crippled for life, or so I thought. Once I began exploring the possibility that this disease is more strongly psychological than I was assuming, despite the crazy symptoms that I believed just “had to be” caused by a neurological problem, was when I began to take my own power back over my healing and make progress. This was especially difficult as I have a hard sciences (engineering) education and letting go of my physics/math oriented view of the brain and the world was difficult. What I discovered is that “neurology” and “psychology” are more closely related than many people suppose. All of the emotions you experience over the course of a day are actively changing the “neurology” or physical structure of your brain. One can even continue to view HPPD as neurological, but I believe you must understand that you have a lot more power over changing the “neurology” of your brain moment by moment by actively regulating/lifting your emotional state throughout the day. Again, I don’t mean to dismiss anyone’s viewpoint I am just sharing what worked for me to get to a point where I feel 100 times better than I did 2 years ago. In reading a lot of recovery stories from conditions like this alot of similar themes to this play out as well. I also remember you posting on the post I made 2 years ago when I first got sick, I hope you’re doing well! Wishing you all the best Alex
yarkadin Posted November 5, 2024 Report Posted November 5, 2024 (edited) Not only do I disagree with the opinions of this post, the opinions expressed are simply objectively wrong and misleading. HPPD is not a set of "psychosomatic symptoms that is kept alive by obsessing over them". Writing like this trivializes the gravity of what most people on this board and with HPPD overall are experiencing and suffering. I also take offense at the "special snowflake" comment. This is not a game of personal pity or attention seeking. Over the 25 years I have had this disorder or disease or however one may choose to call it (I personally think "disorder" is inaccurate), I have seen much similar self-important writing of various people abandoning Western medicine and going into some Zen and New Age alternative path of self-illumination, deceiving themselves into believing they are fully cured of the core symptoms. This is followed by requisite proselytizing and condescension of others having not similarly made it to the top of the Mountain of Enlightenment. While I do agree there is a remarkable level of plasticity to the brain and the placebo effect is extremely powerful and should not be denied or trivialized, there is only so much plasticity between the (crudely stated) hardware and software components of the brain. Damaged goods or entrenched neurological anomaly whether it be hereditary or imposed upon the organism in life from without (as in our cases), does not necessarily improve with changes in "orientation" or "focus". Schizophrenia, to give the typical R.D. Laing example I like to use, is not a "normal psychological adjustment to a dysfunctional society". I think we've gone past that point as a collective society and have learned to call it for what it is: a physical illness. Having said that, I do agree with your skepticism about curing HPPD by "targeting the neuroreceptors" that are responsible for HPPD. We don't even know exactly what those neuroreceptors are, nor in fact do we know whether they are at the core of this, or whether it is a complicated network of problems scattered across the entire brain, maybe even on a lower level (glial cells?) than the neurons themselves. I've stated this in this forum on different occasions that this may well go beyond the thalamus and visual cortex as evidenced by problems many us experience with tinnitus and depersonalization/derealization. Artificial intelligence may play a role in solving the problem, and I do think there is a concrete etiological process taking place since certain drugs help, but I'm also not optimistic. And second, I do agree with Jay that your approach of reading your psychology and alternative new age books could be helpful for a certain subset of people as aid in dealing with the purely PSYCHOLOGICAL problems associated with HPPD. If religious faith, prayer, New Age, and so on, helps make you FEEL better living with HPPD, then that is great for you, but let's not conflate facts or prop our noses up in the air in the belief that something that helps us cope will necessarily help others cope the same or more to the point -- resolve the underlying issue itself directly leading to all of these problems in the first place. Edited November 5, 2024 by yarkadin
Alex123 Posted November 5, 2024 Author Report Posted November 5, 2024 Hey Yarakdin, Thank you for the thoughtful reply. I do want to apologize if you took offense at the opinions I expressed or if my post came across as too prideful, although I do feel proud of myself for having gotten better I would never intend to judge others who are struggling in circumstances other than mine nor insist that my opinions are the only ones that could help someone make progress. I didn't intend to speak as if giving directions to anyone, or condescending anyone, I simply wrote down the concepts and points I wish someone had told me during my darkest days because in my own personal experience they are what helped me get better. To the extent I came on here at all it was to share some information that helped me, in the hopes that it could help someone else in case they hadn't come across information like it just yet, not to pound my chest and tell everyone on here how great I am, and again I apologize if the tone of my writing came across that way. As I am speaking from personal experience, I do not mean to trivialize the gravity of what people on here are going through. As I mentioned, at my worst with my symptoms I felt like I was in a living hell of intense suffering, I truly felt my life as I knew it was over and that I was crippled forever. I am also speaking for myself when I say that there was a lot of personal pity-seeking involved on my part as I angrily pleaded for my family and friends to understand how I now have this rare condition and I am suffering unbearably now. And just because I believe HPPD is a set of psychosomatic symptoms that is kept alive by obsessing over them does not mean that I am trivializing the condition. As I know firsthand the pain and terror someone feels in this position is very real. Psychosomatic symptoms are extremely powerful and it took me a lot of time to even begin to confront them and deal with them to the point where they began subsiding. Regarding the last two paragraphs of your post, it seems that you admit that there is plasticity to the brain but you are of the belief that it is limited. Genetic factors or imposed neurological anomalies can be improved, but not fully overcome. Where is the "scientific" evidence for this belief? This question is nowhere near settled. All I'm saying is, if you have a choice between believing that the brain is plastic enough to heal itself from something like HPPD, or believing that it cannot, why would you not believe the former? Especially when there are plenty of personal stories pointing to the fact that choosing the former belief has helped people alleviate their suffering? I do believe there is a etiologic process taking place, but that it is impossibly difficult to discover with the tools we have at present. And regarding the resolving of the underlying issue - my suggestion is that the UNDERLYING ISSUE itself is not a biochemical imbalance, but rather a lack of faith, trust, acceptance, trust, etc. or whatever you want to call it. Science is a very powerful tool, and I respect its applications in the realms where it has real power, but I don't believe it has any place in the healing of the underlying issues causing conditions like this, and it won't have the power for quite a bit of time.
yarkadin Posted November 5, 2024 Report Posted November 5, 2024 Hi Alex, I'm sorry myself if I painted a straw man of who you are as a person and/or of your intentions in my response. I'm glad that you wrote back and clarified... and sure, I think you have every right to be proud of your achievement ascending from what appears to have been suicidal depression to a state of transcendence and personal empowerment. You found solutions that worked for you personally and consequently feel a desire to share them with the community. Everyone has their own story of coming to terms with HPPD and dealing with its presence and for some people your path to acceptance of the fact may work better than other solutions... I get that and I respect that. Our big disagreement seems to be in the nature of HPPD where you are making bold claims that it can be fully controlled, almost turned on and off at will, and that it is not a "real condition". I think it's safe to say that this contradicts the experiences of most people with HPPD on this site and does indeed trivialize it. You are claiming that reading some books, or controlling one's focus or beliefs, can cure HPPD. And what's interesting to me is that it seems you implicitly acknowledge that this isn't the case, as you write above, I quote, "You may not have control over whether your symptoms are there, but you do have control over how you respond". This suggests (correct me if I am wrong) you accept that HPPD may still be "there", with the qualifier "may", denoting possibility, just that you can control your responses to them (which I agree), but then also you write, "In essence once you work on recovering from your depression and anxiety, your HPPD visual symptoms will either go away or not bother you any more", which no longer has any qualifier "may", but rather "will". I'm going to give you the benefit of the doubt outside of all of these semantics that you don't mean that everyone has this ability to heal, and that you are only talking about reactions to HPPD, the suffering associated with HPPD, and not the HPPD itself. But it's hard to get that from reading your text... you seem to be suggesting instead that both things are tied together, like the suffering and the HPPD are one and the same thing. Let me give you a little personal story... I haven't visited this forum in years and only decided to return back this year because the tinnitus has gotten worse for me all of a sudden. The worsening of the tinnitus could have other underlying issues, I concede... I could be genetically predisposed to it, who knows, I could have gotten it even without HPPD, but I clearly didn't "will it" into existence; it emerged into my consciousness without any deliberation on my part. This same phenomena of events coming into consciousness, coming into existence, can be extrapolated easily to the many other symptoms of HPPD, except we know for a fact (outside of epilepsy, brain lesions, etc) that they don't occur in normal people who haven't taken hallucinogens in the past. There are days, for example, and I think many others here will say the same, where depersonalization, palinopsia, after images, entoptic phenomena, are worse, due to lack of sleep or illness or even changes in the weather. I can almost predict when it will be worse as it follows a line of causation, like LED headlights on cars in the evening leaving long trails. You just know it's going to happen. It's clearly not a matter of choice, but you're claiming that it is. That's where I'm having difficulty with what you are saying above. You seem to be suggesting that floaters, visual snow, and so forth, everything I mentioned, are all voluntary. This means that the VSS, for example, are wasting hundreds of thousands of dollars, when all people need to to do is read Eckhart Tolle's book to be cured of visual snow. Is that an exaggeration? You tell me. Or that pseudoephedrine, or tetrahydrocannabinol, or antipsychotics, all of which demonstrably worsen HPPD, are actually all part of a voluntary psychosomatic response, that these are reactions we can control, but are choosing not to control? I find all of that quite spectacular, if that's what you really believe. But hey, again, I don't want to put any words in your mouth. If anything I wrote is a misrepresentation, please let me know... we could be talking at cross purposes because when I talk about HPPD, I talk about the symptoms of HPPD, not the suffering or emotional reaction... whereas for you, it may be vice versa.
Jay1 Posted November 6, 2024 Report Posted November 6, 2024 19 hours ago, Alex123 said: Hey Jay, I hope you’re doing well. I certainly don’t mean to start an argument about this because that’s not helpful to anyone but I just want to share that a key element for me was letting go of viewing this condition from a neurological standpoint. I believed HPPD was a neurological disease for a few months and I felt nothing but hopelessness and doom. If the psychedelics damaged my brain, and now there was a “neurological” problem, I had no power to fix this myself, and none of the doctors have a clue either since research about this disease is in its infancy. I was doomed to suffer, and be mentally crippled for life, or so I thought. Once I began exploring the possibility that this disease is more strongly psychological than I was assuming, despite the crazy symptoms that I believed just “had to be” caused by a neurological problem, was when I began to take my own power back over my healing and make progress. This was especially difficult as I have a hard sciences (engineering) education and letting go of my physics/math oriented view of the brain and the world was difficult. What I discovered is that “neurology” and “psychology” are more closely related than many people suppose. All of the emotions you experience over the course of a day are actively changing the “neurology” or physical structure of your brain. One can even continue to view HPPD as neurological, but I believe you must understand that you have a lot more power over changing the “neurology” of your brain moment by moment by actively regulating/lifting your emotional state throughout the day. Again, I don’t mean to dismiss anyone’s viewpoint I am just sharing what worked for me to get to a point where I feel 100 times better than I did 2 years ago. In reading a lot of recovery stories from conditions like this alot of similar themes to this play out as well. I also remember you posting on the post I made 2 years ago when I first got sick, I hope you’re doing well! Wishing you all the best Alex I'm doing ok thanks... Keeping up the fight! There's certainly a cycle of the psychological feeding the neurological, and vice versa... But as someone who gets DM'd with many, many cases that never get discussed here, I hear of 100s, maybe 1000s of cases of visual issues without any anxiety or dpdr, so neurology must play a part. The fact that it shows up clearly on qEEG suggest the same. Anyway, I think the overall advice is solid and we should focus on the messaging of trying to avoid self blame and self loathing while trying to frame life in a more positive way. It 100% helps. I have a hippy mantra! "If there's a choice between love and empathy or hate and fear, navigate towards the positive". It serves me well.
yarkadin Posted November 6, 2024 Report Posted November 6, 2024 Yeah, what Jay wrote above. Thanks for crushing it down My HPPD stuff was over-the-top yesterday I think in part because of my anxiety over the election. The feedback loop between the psychological, i.e. anxiety feeding the neurological can't be denied, I've been dealing with this for decades and I see the pattern. But like I said and as Jay said, the visuals don't just disappear when we are doing fine and dandy. There is a level of plasticity that only goes so far, only reaches a certain threshold.
brake Posted November 12, 2024 Report Posted November 12, 2024 (edited) On 11/4/2024 at 10:32 PM, Alex123 said: Hello everyone, My name is Alex and I consider myself recovered, or at least sure of being recovered in the near future from a set of symptoms that would be characterized as HPPD under the official DSM-5 manual. I hope everyone is well and is doing their best to find hope in the challenging position they find themselves in. Once I started being serious about my recovery I told myself I would never come back on this site until I felt recovered/confident enough that I had overcome this and could tell others a bit about my healing journey to offer hope and help to people who are struggling like I did. In March-June of 2022 I experimented with mushrooms a few times. I had taken acid a couple times in the past and smoked weed and drank heavily for a few years of my life. I’m also pretty sure that I had accidentally smoked spice on a couple of occasions. I am now of the firm belief that whichever substances you took, how much of them you took, how long after you took them, etc. is not of any importance as to whether you can recover or not from HPPD but when I was really struggling the onset and what caused everything was something I definitely obsessed over. Anyways, a few weeks after I took the mushrooms (it was an anxiety-filled, but not overwhelmingly horrible trip) in early August 2022 I started getting symptoms very quickly and in full force. Within a day or two, I went from normal and seemingly happy with life to having - Visual symptoms of HPPD (visual snow, floaters, bizarre color saturation of things in my visual field, the world looking like it was made of plastic, unreality, insane closed eye hallucinations that scared me beyond belief (spirals/colors/weird shapes and forms), everything just generally looking oversaturated/different/strange/scary, vision altered in ways that difficult to describe, etc. etc.) - Severe psychosomatic pain in the body (foot pain, severe headaches, feeling like a knife was stuck in my chest all day) - Extreme fatigue and insomnia - A constant sense of doom, fear, helplessness, and being trapped - Severe anxiety and suicidal depression, with frequent panic attacks - Others that I’ve probably forgotten After a few weeks of these symptoms I truly believed my life was completely over and there was no way out of my suffering. Based on all of the online “research” I did on HPPD I had concluded that my brain receptors/function was irreparably damaged by the drugs and there was no hope of fixing it. I was attending a prestigious professional school at the time but due to COVID constraints luckily my workload was no more than 2-3 hours a day but I was barely making it through. I would barely sleep most nights laying in bed surrounded by crazy visuals and intense pain and fear. My parents and girlfriend were taking turns watching over me at night in case I tried to end my own life. In a word, it was completely fucked. I had a psychiatrist caring for me who prescribed me Prozac, then Klonopin, then Gabapentin, then Hydroxyzine (to induce drowsiness before sleep), told me to take high doses of ibuprofen for the pain in my body, then quietapine when all the other drugs were barely working and I was getting more and more hopeless. After a few months of this and my own research I came to the conclusion that Western medicine, psychiatry/neurology, even psychology will not ever solve my issues and I completely gave up on them and stopped trusting them hereafter, which may have been the best decision I made. The truth is the brain is the most complicated structure in the universe and even the most intelligent scientists are nowhere near understanding how it functions on a molecular level – to think that we are anywhere close to having drugs that can “target the receptors” that are responsible for HPPD in the brain is such a laughable preposition I can’t believe credentialed people who received advanced education and degrees truly believe in this kind of stuff. Luckily, as I discovered that there are alternative routes to fix yourself without relying on anything external to yourself. After I went to my PCP, got my blood tests and they came back clean, and I got an MRI with a neurologist of my brain to ensure everything is structurally sound I left western medicine and stopped seeking answers from them entirely. I strongly suggest that if you are cleared by a doctor on these fronts you should stop looking from answers from them as it will only feed your anxiety. Well, after a few weeks/months of this I realized that it couldn’t go on, and that living that way was no way to live, and that the choice was either end it at all or get better so I swallowed my pride and accepted that I would have to make a serious attempt to get better no matter how long it took. The choice is obvious so I started seriously researching how to get out of this instead of doomscrolling, self-diagnosing, and trying to prove to everyone and myself how unlucky and hopeless my situation was for hours on end. For everyone who is still in that place I do not mean for this post to sound harsh or judgemental – trust me I was there myself and I completely understand how isolating and scary it can be – I just mean to say that in order to put yourself on the right track you have to take a stand and let all of your unhelpful behaviors go. Letting go doesn’t happen overnight but you can always start right now. There were so many stages in my recovery that I can’t possibly give all of the stages and helpful information here, especially as each person’s recovery is very personal. This is not to say that recovery is complicated – it is actually so much more simple than I was making it and most people think, but it just takes a while and multiple ways of understanding/saying the principles before it finally clicks and you begin to trust you can get better. Please give yourself as much time as you need to recover and do not put any pressure on yourself. The weird thing about the mind is that the more you want to recover and the more you insist on it the more stress you generate and the more you prolong your recovery. Be gentle with yourself and treat yourself with a lot of love, but be firm with yourself when you notice yourself wavering. However, I would like to offer everyone a list of things that is important to keep in mind: 1. You are not a special snowflake. It doesn’t matter what exact symptoms you have, whether you’ve labeled yourself as having HPPD Type 1 or 2, or visual snow, or palinopsia, or whatever other fancy name you’ve come up with for you set of symptoms, whether someone else on a forum has the same symptoms as you, what triggered your symptoms, how many drugs you took and which drugs they were, how long you have had your symptoms, etc. Recovery doesn’t happen by ruminating on the past, or by labeling what’s going on endlessly, it happens right now in the present. If you have some mixture of anxiety/depression around things you have in your visual field or feel in your body you must let go of the storylines you have built up about what symptoms you have and why they are worse than other people’s, etc. and trust that if other people have recovered, so can you 2. HPPD is not a real “condition” like cancer or heart disease. Everything about your body is structurally sound so long as your PCP has cleared you and you have even gotten a brain image like an MRI (even this can be overkill, but if you can afford it I would do it just to assure yourself. Any imaging further than this would be a waste of time and would feed your anxiety) You must let go of the label of “having HPPD” if you hope to make a recovery. It is not a real condition but only a set of psychosomatic symptoms that is kept alive by obsessing over them and feeding your depression and anxiety over them 3. HPPD is not caused by psychedelic drugs, psychedelic drugs can be a powerful experience that triggers latent emotions, fears, obsessions that you have been avoiding for your whole life. Do not blame drugs for causing the emotions you have built up inside of you throughout the course of your life and trust that you have the capability to face, feel, and overcome the power of these emotions 4. In essence once you work on recovering from your depression and anxiety your “HPPD” visual symptoms will either go away or not bother you any more 5. You must understand that fear is a choice, and in each and every moment you have the choice to choose something other than fear. Do not concern yourself with past moments in which you remember suffering and being scared and also do not concern yourself with the possibility that you may not recover or that you will suffer in the future. The truth of the matter is that when you are struggling with a condition like this it has become automatic for you to choose fear moment by moment and you will have to make a conscious effort in each moment to choose something else. 6. Conditions like HPPD, Chronic Fatigue Syndrome, Long Covid, PTSD, OCD, Anxiety/Depression, and “chronic illness” (when used to describe psychological disorders) are all much more similar, and more simple than “experts” make them out to be and they are kept alive because you are afraid of discomfort. This is obviously completely normal and not something to fault yourself for, but, paradoxically, to recover you must stop obsessing over how you feel and continuously trying to make yourself feel better. Surrender is key. This condition can be an enormous source of personal and even spiritual growth so instead of being jealous of others who are living “normal lives” you can be grateful that you have an opportunity to become a far better person than you ever were before this happened to you. One aspect of this is becoming comfortable with discomfort. In fact, a very simple practice that helped me immeasurably was checking in with myself throughout the day with a simple question “Where do I feel discomfort right now in my body?” or “What in my visual field is bothering me right now?” or “what am I avoiding/wanting to go away right now?”. Then, instead of thinking about how terrible my situation was, I would ignore my catastrophical thoughts and put my attention right on the discomfort, or right on the visual experience that was unpleasant, just for a few moments. This can be seen as an act of love – giving attention to sensations, feelings, visual experiences that you have been actively avoiding, hating, or resisting for a long period of time. You can see your visuals and your bodily discomforts as little children who have been left crying and need love in the form of your attention and acceptance. If practiced for a bit this can bring a lot of relief. 7. In line with the above point, so long as your physical health is cleared by your doctor, stop seeing pain/discomfort as an alarm signal to run away from. Change your orientation – from now discomfort will be a signal that is telling you: “look here”. You may not have control over whether your symptoms are there, but you do have control over how you respond 8. Start watching what your thoughts say throughout the day, and stop believing what your thoughts say. This may be the most important skill to learn. During my worst times with this condition, I would have hundreds of thoughts a day that said “I am suffering unbearably for no reason”, “I am the unluckiest person in the world”, “I can’t bear my visual changes any longer”, “What if this goes on forever” etc. etc. Stop believing all of this nonsense. Learn to create some distance between yourself and what your thoughts are always telling you. It takes practice but it can be done. After a few minutes of approaching your discomfort, and ignoring what your catastrophic thoughts are telling you, you will start to get thoughts that are more sneaky. “This will never work”. “Nothing is happening”. “I’m still suffering”. Ignore those too and continue to build your faith in your recovery. Do it again and again until it begins happening. 9. Put your trust, or faith in yourself, and the universe that your natural state of being is happy. It takes time to build this trust or faith but the more you trust your body, the world, and life the easier and easier your recovery becomes. Your body is endlessly intelligent and can and will heal itself- you just need to get out of its way 10. Stop measuring how far along you are in your recovery, constantly checking in to see if you’re making progress, etc. Just focus on the principles, on responding properly and not catastrophizing, and let your body do the rest without your input and analysis The above points were truly cornerstones of my recovery. By practicing, acknowledging, and reminding myself of the above, along with many other resources I finally convinced myself that I could recover and am well on my way to. I went from utter and complete hopelessness, suicidality and pain to now 2 years later living a “normal” life, treating patients at work and spending time with family friends but with a far greater sense of gratitude for even mundane situations in life. I still have mild symptoms at times but the amount I spend thinking or even acknowledging them throughout the day totals less than a few minutes. There is a lot more I can say about this topic but there is too much for one forum post. I would just like everyone to take away that I truly believe that recovery from this is possible for each and every one of you and I truly believe that once you learn the right principles about how this condition and your mind/thoughts in general work it is only a matter of time before you recover, although you certainly must have a bit of patience because it doesn’t happen overnight. I truly hope that this post can help some of you who are currently in a dark place and tell you that you can live a normal life again and that you are closer than you think. I also want to point out that my recovery has taken on a very meditation-heavy and spiritual side which I think can be very beneficial, but is certainly not necessary to make a recovery. I found that meditation helps focus the mind and helps you not be as swept up with catastrophic thinking and obsessing over your symptoms. I would definitely recommend starting a meditation practice for anyone looking to recover from something like this. Lastly, please don’t be discouraged and think that this is too much for you to do, or that you can’t do this because it’s too difficult or complicated. This is truly a process, and often a life changing one and give yourself as much time and space as you need to undergo it. It won’t happen overnight but nothing good or worth having ever will. You always have the choice to begin right now. Some of the following are some Youtube videos/channels and books that were of immense help to me: - The Brain’s Way of Healing by Norman Doidge - The Power of Now by Eckhart Tolle - Awake: It’s Your Turn by Angelo Dillulo*** - this book especially is very useful for learning how to deal with difficult thoughts and emotions - The Mindbody Prescription by John Sarno - Illumination by Rebecca Li https://www.youtube.com/@twopaths – Two Paths is a channel from a man named Jay who actually was diagnosed with HPPD but proceeded to find a way out of the condition https://www.youtube.com/watch?v=zCT3wcoZ9ds – Sadghuru has a lot of good content on regulating your mind and emotional state https://www.youtube.com/@cfsrecovery – Miguel Bautista’s Youtube channel in which he talks about recovering from Chronic Fatigue Syndrome but every single one of the principles apply for HPPD, simply substitute “HPPD” for “CFS” when he talks https://www.youtube.com/@RaelanAgle – Raelan Agle recovered from CFS and posts success stories from people who did as well. Once again, HPPD recovery is pretty much exactly the same as CFS recovery so don’t let these arbitrary labels and “differing symptoms” stop you from using this resource https://www.youtube.com/@life.withkyle – Kyle is a guy who recovered from Long Covid and shares his experience, which is on the spiritual side but very helpful Good luck everyone and I am wishing you all of the best in your difficult and disorienting time. Very inspiring story and I agree, the first time I read Eckhart Tolle's stuff it changed my life for the better in the beginning. I believe that spiritual and religious experiences and things can positively change your outlook on life. But this was when I was like 20 years old and didn't have HPPD yet. Check these 2 scientific articles out. They prove that we have yet to discover more about the brain. They also prove that we found some physical evidence for visual snow syndrome in the brain: New brain scan study discovers possible biological basis of visual snow syndrome Researchers found that some brain activity remains “invisible” in traditional rsfMRI scans This leads me to believe that a lot of our brain activity continues to elude us while our technology is not that advanced yet. Edited November 12, 2024 by brake
brake Posted November 12, 2024 Report Posted November 12, 2024 "Using a new approach that was developed by researchers at the NIHR Maudsley BRC, the study combines information from positron emission tomography (PET) imaging information on the distribution of different chemical receptors in the brain with functional Magnetic Resonance Imaging (fMRI) analysis of the interaction of activity between different regions of the brain. Using this Receptor-Enriched Analysis of Functional Connectivity by Targets (REACT) approach researchers can extract a map of activity of brain chemicals across the different brain areas. The five brain chemicals examined in this study were noradrenaline, dopamine, serotonin, glutamate and GABA." This is the best we can do so far it seems ^
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