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Developed symptoms in 1989, only found out about HPPD yesterday. The Long and Rambling Post...


sob317

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I will apologize upfront for what is sure to be a long and sort of free form post. As mentioned in the title I developed symptoms in 1989 of what is now being called HPPD. I came across a posting about HPPD by chance yesterday and have been reading ever since. I was looking at some of these posts from people and felt compelled to put some of my own experience in words. Maybe they will help someone but I'm hoping finally being able to talk about this to someone who knows what was going on will help me as well. I'm feeling sort of overwhelmed as I've been remembering what the onset of this was like and how it turned my life upside down. I'll break this into 3 parts: what was going on pre-HPPD, the onset and trying deal with it and finally how things are now, 25 years later. This is the first time I've ever really talked to anyone about this and the strange mix of feelings is overwhelming. So as promised, The Long and Rambling Post...

 

1) And So It Begins...

 

My history with drug use began in Grade 8 at 13. A friend had a joint, I took a few puffs and didn't get much of anything from it. About 6 months later, on my 14th birthday, I smoked some hash and got seriously high and liked it. Over that summer I pretty much turned into a pothead. I was getting high several times a day, as many days a week as I could. By the time I entered Grade 9 I was a full time stoner. I would get high before school, during school and after school. By the end of Grade 9 I had tried pot, hash, oil, cocaine, mushrooms and LSD. Grade 10 was the year I started getting into psychedelics use with more frequency. LSD was readily available and was cheap. I tripped on average maybe once or twice a month. I have always had anxiety when taking psychedelics, it's just been part of the trip for me. Most trips were very similar: mild to moderate anxiety, followed by movement and breathing visuals, weird shit in the clouds, patterns, etc. Your standard trip. I had one trip that was several times more powerful. I was unable to leave the house and had extreme visuals just 10 minutes after ingesting. It wasn't a "bad" trip per se, just extremely intense. I remember at one point looking down the hallway toward the bathroom and seeing the funhouse mirror effect going on and even though I knew I was just high and it wasn't real I had this feeling that I had wrecked our house and would be in trouble later when my mom got home. I knew it was fake but had this lingering sensation that I had really broken something this time.

 

My final LSD trip would be a few months later. A friend had a sheet of acid he was cutting up and there were a few leftover scraps that I ate. I went home not expecting much of anything and an hour later I was completely fucked. I think maybe it was because I wasn't prepared that it hit me so hard or maybe I just ate too much. Whatever it was I started heading down the bad trip corridor. I was home alone and my mind was on fire. This was probably the closest that I had ever come to freaking out. It was 3 in the morning, I was alone and I felt like I was watching an infinite amount of TV screens that were blasting information at me and I couldn't keep up. I was barely able to keep it together by slowly counting down time watching a digital clock that I had and counting the dashes that made up the time on the screen. For example a 1 would have two dashes and a 0 would have 6, an 8 would have 7, etc. I would count these over and over until a minute would go by and then I would start again. At one point I actually wrote myself a note that said NO MORE SQUARES as a reminder that I didn't want to do LSD ever again. And I didn't. It may be worth mentioning that I had also done mushrooms a few times but they were definitely not as hard-core for me as doing LSD. Looking back the mushroom trips seemed almost enjoyable while the LSD experiences were always much more intense and anxiety prone. Whether one or the other or both triggered my HPPD I don't know but for me the HPPD seemed to mirror the heavy anxiety of my LSD trips.

 

2) Back down the rabbit hole...

 

I'm not sure how much time passed between my last trip and the onset of HPPD. I think it was several months but am not sure. It was at least a couple of months and definitely less than a year. At any rate it had been a while. I kept my NO MORE SQUARES note and had no interest in doing any more psychedelics. I didn't feel weird or disjointed or anxious just that I had gotten what I needed (and a bit of what I didn't) from the chemicals. All that would change with the onset of HPPD.

 

I had been working as a painter with a friend who was a few years older and lived in the same building as me. I was still smoking ridiculous amounts of weed but had given up the LSD, mushrooms, cocaine, etc. I would drink occasionally, maybe once a month or so. Anyway, we had come back to the building for lunch and went outside to smoke a joint. I had a bit of a headache and took a couple of regular Tylenol for it. I don't think there was anything wrong with them or that I took something else, it was just a coincidence that my symptoms started soon after. So we are smoking this joint and almost immediately I begin to feel off. Within a minute or two I am having strange visuals and I can see the knots in the wood on his balcony spinning in circles and I'm having this sensation of having just dropped LSD. About a half hour later the effects sort of subsided but I was still feeling a bit sickish. I got home later that night and went to have a hit of some different weed. Almost instantly I was back tripping with moderate visuals and extremely high anxiety. After nearly 4 years of daily pot smoking I quit that night but the HPPD was just getting ready to go.

 

Over the next few days things went from bad to worse. The first couple of days I kept trying to convince myself this wasn't happening but the evidence was overwhelming. Weird visuals and I felt like I was always of the verge of tripping hard, like I was seconds away from being sucked down some unknown hole. The anxiety was over the top. What had I done? Was this permanent? Did I smoke some bad weed? What about those Tylenol? We had been spraying oil paints recently which can give you a stoned sensation. Had I inhaled too many fumes? I had a few really bad concussions in the previous years, what this related? My mind raced as I attempted to reconcile things. I still hadn't equated this with psychedelic use even though the similarities were striking. I just thought it was everything. The drugs, the lifestyle, my diet, the paint fumes, the concussions, my personal life anxiety. It had all rolled into one ball and I had finally broke my brain. Was this what being crazy was like? Was I crazy? Do crazy people know they are crazy? I had no idea what to do or who to talk to or anything at all. This was 1989, there were no message boards or internet to speak of. I couldn't run to the comfort of weed like I had before as it compounded my symptoms immensely. This bothered me a lot as I had always enjoyed smoking. I had sort of a rough childhood and found that weed helped (in my mind anyway) me think about things and sort of mentally rearrange them so that I could cope better. Still sort of broken but at least useable. I no longer had that oasis.

 

About a week in I started to get really scared. I now realized that something was way wrong. How far would this go? Every hour seemed worse than the last. If I had 3 episodes one day now I was having 5 or 6. Then 10. I could feel my head breaking inside and was terrified. I WAS crazy. That was confirmed. Non-crazy people didn't feel like this. But I couldn't let anyone know. They locked up crazy people. How long could I cope with this before I had a breakdown? Surely it had to go away sometime. Or would it? Would it just get worse until eventually all reality faded away? I had heard the cautionary tales of people going crazy on LSD and mushrooms but always figured those people would be babbling lunatics, not able to fully analyze and describe what was going on with them. I had never heard of someone who could, by most signs, appear fine and was cognizant of being caught in a never ending trip. By now the anxiety was full-time. It had gone from severe panic attack situations to just always being on. I felt exhausted. My symptoms had amped up considerably. The visuals were constant now, the edges of my periphery were wobbly, I couldn't look at anything with a pattern without seeing subtle and not so subtle movement. Perspectives would randomly shift and the borders of objects meant nothing anymore. Pictures on the wall would seem to move and morph around, never finding a constant home. I could seemingly hallucinate and induce patterns at will simply by setting my mind to it. A set of window blinds would look like a waterfall with the bottom constantly dropping into the unknown and new slats appearing at the top to take their place. Everything is slightly off kilter and I am having dizzy spells. Seeing weird geometric patterns at night now, the darkness is full of weirdness. There are no words to describe it. I have to move a white shirt in my room as I can see it reflecting and warping into different shapes and faces in the dark. I feel like it's watching me. The walls of the room ebb and flow as if I'm in a bubble. I don't see the breathing of the walls as much as I feel it in the darkness. My body and the walls twist and breathe together not in a beautiful harmony but like an iron lung. Cold, impersonal, unrelenting. Anxiety is through the roof. It's feeding on the visuals and vice versa. I'm counting hours until I finally go crazy or this goes away. Something has to give. I don't feel suicidal but I can't go on like this.

 

Still no way I'm talking to anyone about it or going to a doctor. Getting worse every day to the point where I no longer have anxiety free moments. I'm caught here in this web now and am stuck in my fucked up head forever. I'm 17 and am fucked for life. The amount of shame and regret I'm feeling is enormous. One week turns into two turns into three and so on. I am coping but feel awful. My mind is broken and exhausted. I am learning to live with the visuals but the anxiety is harder to deal with. The feeling of being swept away is constant. Like I'm a sandcastle with the waves slowly taking pieces away. Then after a month something changed. It's not getting better but it's not getting worse. Things have seemed to level out which after a month of going up is a welcome relief. Had I walked into this at first my mind probably would have snapped but after a few steps at a time this is my reality and I have become accustomed to it. I feel like I have taken a tiny step back from the cliff. It's a small difference but it is there. Two weeks later I have almost convinced myself that I have plateaued. I have found that having a couple of drinks helps me relax. I've never been a drinker but am having a few shots daily which seems to be working as a nerve tonic. The anxiety has taken its hand off the throttle. 6 weeks after it started I'm feeling like this is as bad as it will get. It's horrible but it's now 99% horrible which is a whole lot better than 100%. 42 days after I quit smoking pot I feel like I am going to test the waters and smoke again.

 

I end up smoking some hash and immediately my visuals are crazy. Everything is looking very cartoony. Not the usual acid trip look but very strange animation. I remember watching The People's Court and watching Judge Wapner's face morph into a caricature of itself. With the amped up visuals comes the anxiety full bore. I am regretting smoking weed now big time. My heart is racing and the room is almost spinning. I contemplate phoning an ambulance, my heart is going faster than it ever has before. I try to count it and I stop when I hit 200 beats before a minute is up. Am I imagining this or will my heart give out eventually? I'm drenched in sweat. It's real and I keep going up. 2 hours goes by where I have been on a mini-trip when I can start to feel the pot wearing off. I come down off the weed but instead of going back to 99% I am at 98.9.% A miniscule amount but something has changed.

 

A week later, I'm at 98%, the simple fact that I can feel that not only is this not getting worse but it's getting slightly better does wonders for me. The anxiety is slowing down and while the visuals are still there certain things are getting better. I start smoking VERY small amounts of pot again and while the visuals and anxiety do get intense for about a half hour afterwards I'm finding that I'm feeling less anxiety overall afterward which is a trade-off I'm willing to make. 3 months go by and every week is an improvement. Sometimes the days would get worse but overall I could feel a very slow weekly change. 6 months and the normal anxiety is ebbed considerably. I still feel weird occasionally but it's not always there. The visuals have decreased and seem to only be there if I stare too long at a pattern like the rug or ceiling. Wood grain is especially prone to moving around. Everything is more peripheral now, like I'll get a shimmer in the corner of my vision but if I look at it things stay stationary for the most part. Every week shows improvement. I can smoke a small amount of weed and enjoy it although I'm still not smoking socially as I'm afraid of getting too weirded out with other people around. Only at home with a tiny, tiny, pinch of pot.

 

9 months later and I feel like a different person, the standing on a cliff/ waiting to get sucked into the void feeling has gone. I find it hard to imagine what that even felt like now that it is no longer there. The visuals are very minor, almost gone unless I concentrate on it. Certain things like striped wall paper or shirts with the lines close together look weird but it really doesn't bother me. My symptoms are maybe 5% max of what they were and the worst part, which was the panic attacks, are now gone. After living with what I had in the last bit 5% is a walk in the park. My head and brain feel almost normal now. I go to a Rolling Stones concert and have a couple hits of a joint with a friend and don't freak out. The first time I have smoked socially in almost a year. To me this is a mini success. Finally a year has gone by and I feel I am 99.9% fixed. I will never be 100%, the battle was too much to walk away unscathed. I literally feel blessed and like I have accomplished something great. Like I came face to face with a giant and took it down. But also that I got lucky and that the giant could come back one day much more fierce.

 

3) Aftermath...

 

It has now been 25 years since I had my HPPD experience and as I mentioned yesterday was the first time I actually heard anything approaching a clinical discussion of this. I feel like I fought a battle and came out on the other side with a few scars. I could go into a long discussion of how I feel like this might have affected me long term, goals and ambitions and how I view life in general but that will be a post for another day. I feel like I have pondered enough on this for the last 24 hours and now need to let some of this soak in. Simply knowing that this has a name and face has done wonders. I feel like a weight has been lifted. Knowing (or assuming heavily) that I had a disorder based on my psychedelic usage is much easier to digest than feeling like I had a more serious mental problem that went undiagnosed and that I ignored. I am happy for the most part, I work and own a house, have a great wife and kids and feel like I have most of my mental housekeeping in order. Yes, occasionally I will have a quick shimmer of weirdness but it comes and goes so quickly it's almost gone before I realize what it is. It doesn't bother me and on a scale of 1 to 10 is about a .001. Not sure if it's even related or just another sign of getting older and systems starting to break down or maybe related to years of pot smoking which I still partake in. I don't regret decisions I've made because I think that everything I did has lead me here and I'm OK with where I am at in life. I don't recommend ANY of what I posted here as a remedy or anything other than what it is: An observation of what happened to me and how I dealt with it. I'm not sure if anyone will bother reading this entire post but I feel just typing this out has helped me rationalize things a bit. Hopefully someone else reading this and realizing that for some people there is an end to what's going on in your head will help.

 

If you have ANY questions, comments or anything please feel free to post them or send me a PM. I'd be happy to answer anything or just listen to what's going on. This can be some seriously scary shit to go through alone. I did it and it was awful. Just having something like this message board would have gone a long way to helping me realize what was happening and that there are other people out there suffering. Thanks for listening and again sorry for the long post that is probably full of spelling and grammatical errors. I just wanted to get this out as quick as possible to let others know that a (99.9%) recovery is possible for some people.

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Wow you went through a lot I felt dread reading your story did you have static/snow 24/7 or walls breathing there scary for me I've also just started getting vertigo and a weird light thing when I move my eyes side to side also the horrible feeling of not bring me and wanting to die to be at peace just wish there was a cure or for there to be more recognisation of hppd/ visual disturbance being a true illness and being researched like cancer does thanks for sharing ur storie it really does help knowing other people like us

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Hey, thanks for reading.

I have never had the static/snow thing as either a part of HPPD or when tripping. A bubbling sensation would be more accurate for what I generally felt or saw.

The breathing on the other hand, yes. That was always a part of my trips and later a part of the HPPD symptoms. Although during the HPPD episodes it seemed to manifrest itself as more of a feeling than a visual. I would feel it at night when laying down that the room had become fluid and would shift and breathe with me. I updated my original post to mention this and how it didn't seem like a harmonic breathing but a cold, robotic one similar to an iron lung.

 

I understand the "not being me" reference. These were most prevelent for me during the first month or so and was always accompanied by extreme paranoia and anxiety. I guess I would describe it as walking on thin ice or on a slippery slope. I felt like I was a step away from sliding out of myself and not being able to get back in. I never really felt suicidal but if I had to have dealt with this for years rather than months maybe I would have a different opinion. I think I felt like if I died feeling like this I would be stuck that way forever, like dying wouldn't fix things but rather send them into eternity.

 

For me, the anxiety was key. Once I (sort of) got used to what was going on visually and realized it wasn't getting worse was when I started to get better. I looked for any sign, no matter how small, that I was improving and jumped on it. Once I got the anxiety under control, the visuals would mellow. Mellowed visuals brought less anxiety until neither were an issue. They seemed to chip away at each other until neither was a force and although the visuals continued after the anxiety issue cooled down, the lack of anxiety made the visuals seem fairly minimal. In time, they were gone to a point where I hardly thought about or noticed it.

 

How long has this been going on for you? After reading some of the stories here I am counting myself lucky that this was intense for only a few months and pretty much gone after a year. At the time it seemed like forever but I'm realizing that everything could have been a lot worse.

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