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alisa
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I guess I just would like to know how others lives are effected by Hppd. I've had it for about a year and I'm still adjusting. Very glad this site is up again, because it's the only place I have found people who understand. The biggest change has been not being able to drive whatsoever. That is due to perceptual as well as visual stuff. But the hardest part is people have no idea what this stuff is like and I've stopped trying to explain, which works out a lot better. I have such a hard time connecting with people, but I'll never stop trying. I've discovered that hugs and some physical contact helps. I can no longer tolerate loud and angry people or a lot of drama so my circle of friends is getting smaller, but that's ok. I have a sadness too for friends I've had in the past who I'm sure had this, but were misdiagnosed and there lives were ruined as they were given a severe diagnosis like schizophrenia and became institutionalized. So while this is very hard I'm still grateful for the science that has identified this problem and may very well figure this out. I would love to hear from anyone about their experience living life with Hppd. Alisa

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i don't drive either. never have been able to. i had to drop out of school when my HPPD started, i'm currently applying to go back. (fine arts major) i can't get up and do something every day, and i take a lot of rest breaks through out my day. i've lost a lot of friends, because of less time to spend with them, and understanding them less as of lately.. a lot of things in life change because of HPPD. don't dwell on the things that have changed. keep going towards what seems familiar.

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Alisa - speaking as someone who got this in 1981 I think you've got exactly the right idea. When I focused on things beyond myself and obsessing about 'what are these sqiggly things shooting about?' I think I started to heal. The social aspects were undoubtedly the hardest. I was convinced everyone I met thought I was weird and insane and so I guess that's how I came across. But in the end, after feeling sorry for myself for a couple of years I decided to fight and slowly but surely regained my self respect.

Cassandra - I'm a painter and got a BA and MA in fine art. The visuals drove me mad but I found the process of objective drawing especially, to be very rewarding in regards to the symptoms. It's a very philosophical process - to attain what metaphysically is in front of you. Looking back on it things started to get better after 4 or 5 years and the progress went hand in hand with competing with other 'normal' people in the world and achieving ambitions and goals. I've still got VS and floaters but most of the other stuff has calmed down and most of the time I rarely notice it. Lastly, if I look back at my life before the onset of this - it wasn't some utopian paradise. I had my fears, worries and self-doubt. If you look around there are plenty of people who are fit and healthy who squander their lives and seem to need prozac and xanax to get by. One of my mistakes early on was to see my life as 'before' and 'after' and really romanticised the former. I am what I am and HPPD has been a hurdle but also a spur to not let it beat me. I used to have terrible panic attacks and social anxiety out the yang. I am primarily an art teacher these days and lecture to large classes in art history etc....I would have been amazed if I could have seen that 30 years ago. It really, really gets better. And you're lucky to have a forum like this. I only discovered what this was a month or so ago. I was completely amazed that I am not alone. Best of luck.

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  • 9 months later...

I'm another long termer (got hppd in 1995)... as Year 2 said.... If you can get into the right way of thinking, life really does improve.

since getting this, I have finished school, university, set up a business, got married, travelled the world, now live in a foreign country and have friends from all over the world. How you cope is all about determination to not let this illness ruin your life and getting your mindset in the right place.... If you fight it with all the will you would fight, say, cancer... you have a great chance to live a sucessful life.

in social situations... that is where the real fight begins.. it is so easy to hide away, but if, day by day, you try and do a little more to interact with everyone around you.. it soon becomes second nature again.

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  • 7 months later...

Odysseus, Sorry I'm just getting back to you. Just saw your question about friends. It was back in the 70's. And I love to talk about these 2 guys. They were normal, but considered somewhat eccentric, shy, artistic. They loved acid and MDA and it was plentiful back then and super strong and they loved it. When everyone else had quit taking it, they kept on. They started being irritating at parties and never seemed to come down from their trips. Sounds a little like me, but I pretty much stopped after a few years. Paranoid delusions, actually seeing people, unpredictable were some of there symptoms. They also had mental illness in their families. Sadly they spent the rest of their lives living at home or in institutions.

I believe there is some kind of genetic predisposition to this. Just like in my family several of us have a type of high cholesterol that can't be helped with diet and exercise. HPPDers may have a more fragile neurotransmitter system. I just think my friends could have possibly been helped early on. Even messed up my friends were really special people.

This has all just been speculation on my part. I mean who am I, just a mere speck upon this planet. Or maybe we have been touched by God and are here to lead our miserable fellowman to the truth. Please know I have a weird sense of humor. That came before the HPPD.

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if mine worsens and i couldnt drive id pretty much have nothing to live for, its already pretty bad as it is not being able to socialise. i try to think positive and look ahead but theres no denying it, hppd has ruined my life. im reclusive, lost most of my friends, lonely, scared. im 19 years old and i spend my weekends quietly sitting at home going to bed at 10:30 wondering if il ever be able to have a beer again. its also made me sorta, resentful in a way of my friends who are sitting up the whole weekend banging out lines of special K raving it up having a great time. my lifes spiralled pretty wildly downhill and every time i try to do something right it falls through my fingers further so this hppd has just been the cherry on the cake so its kinda hard to think positively. but then again this has been a bad week. im never usually so negative.

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Alisa - speaking as someone who got this in 1981 I think you've got exactly the right idea. When I focused on things beyond myself and obsessing about 'what are these sqiggly things shooting about?' I think I started to heal. The social aspects were undoubtedly the hardest. I was convinced everyone I met thought I was weird and insane and so I guess that's how I came across. But in the end, after feeling sorry for myself for a couple of years I decided to fight and slowly but surely regained my self respect.

Cassandra - I'm a painter and got a BA and MA in fine art. The visuals drove me mad but I found the process of objective drawing especially, to be very rewarding in regards to the symptoms. It's a very philosophical process - to attain what metaphysically is in front of you. Looking back on it things started to get better after 4 or 5 years and the progress went hand in hand with competing with other 'normal' people in the world and achieving ambitions and goals. I've still got VS and floaters but most of the other stuff has calmed down and most of the time I rarely notice it. Lastly, if I look back at my life before the onset of this - it wasn't some utopian paradise. I had my fears, worries and self-doubt. If you look around there are plenty of people who are fit and healthy who squander their lives and seem to need prozac and xanax to get by. One of my mistakes early on was to see my life as 'before' and 'after' and really romanticised the former. I am what I am and HPPD has been a hurdle but also a spur to not let it beat me. I used to have terrible panic attacks and social anxiety out the yang. I am primarily an art teacher these days and lecture to large classes in art history etc....I would have been amazed if I could have seen that 30 years ago. It really, really gets better. And you're lucky to have a forum like this. I only discovered what this was a month or so ago. I was completely amazed that I am not alone. Best of luck.

That really describes me. I haven't had it anyhwere near as long, just around 1 1/2 years........but like you said I used to think people hated me and thought I was acting pretty crazy/eccentric but I've recently started to get over all these paranoid thoughts. I also used to imagine my life before HPPD as some badass constant party, which I went out a lot but it wasn't like that. I still do this to an extent and I've been trying lately to try and stop worrying so much about the past and the way I used to be and try harder on working on who I am now.

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I'm so glad I'm finally figuring how this sight works. There is so much good information and encouragement. I am better because I'm driving again. I just don't drive at night or on busy highways. I go out a lot more, but I still feel safest when I get home.

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For some reason even when my visual snow was really bad I never noticed it while driving, even at night. Unfortunatley I don't have a car anymore because of a blown head-gasket.

HPPD hasn't effeted me that much in what I do it just makes everything less enjoyable and sometimes I am really miserable. I went to school and played sports even when my anxiety was so bad that I was shaking all day and had trouble understanding what others were saying, but not that many people seemed to notice and I explained what was happening to those that did so they wouldn't tink that I was just losing it.

When my DR was real bad I would actually leave school during free periods to rub snow on my face just so I could feel something. Before HPPD I enjoyed idle time and could easily relax anytime, now I get really nervous anytime I have enough time to think about HPPD which is hard for me because I ussualy think alot about my problems. But I am slowly finding myself able to relax more and more in durring free time so hopefully that will trend will continue.

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Odysseus and alisa -

Something very similar happened to me too. A distant relative really got into MDMA and LSD when he was a teen and from what I heard he did both of them quite frequently. Shortly after getting into these he apparently became depressed and later committed suicide. Everybody always just thinks that he was depressed but the situation kind of begs me to wonder if he also developed hppd. This all happened in the 90s, too. What if he was tormented by hppd and he didn't know what was happening to him? I never even met him but this story has started to haunt me eve since I developed hppd.

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I saw a documentary in which a young teen commited suicide. Apparently he had taken a legal high, maybe mxe the same one that gave me hppd. He was acting paranoid as hell, then slashed his.throat. His dad was there and got him to hospital to get stitches. Then the next day when he got home he shot himself. The only thing I can think of that he too had gotten hppd

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if mine worsens and i couldnt drive id pretty much have nothing to live for, its already pretty bad as it is not being able to socialise. i try to think positive and look ahead but theres no denying it, hppd has ruined my life. im reclusive, lost most of my friends, lonely, scared. im 19 years old and i spend my weekends quietly sitting at home going to bed at 10:30 wondering if il ever be able to have a beer again. its also made me sorta, resentful in a way of my friends who are sitting up the whole weekend banging out lines of special K raving it up having a great time. my lifes spiralled pretty wildly downhill and every time i try to do something right it falls through my fingers further so this hppd has just been the cherry on the cake so its kinda hard to think positively. but then again this has been a bad week. im never usually so negative.

I hear what you're sayin man. This whole thing has really takin a lot out of me, mostly the DP. I don't really go out unless I have to. My friends still hit me up to go out but I usually make up excuses to stay in. I really only like hanging out with my buddy that I play guitar with these days.

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I hear what you're sayin man. This whole thing has really takin a lot out of me, mostly the DP. I don't really go out unless I have to. My friends still hit me up to go out but I usually make up excuses to stay in. I really only like hanging out with my buddy that I play guitar with these days.

I need to keep busy now. I get real bad anxiety if i'm alone doing nothing for a while. Maybe you should try doing more. It might suck at first because you will feel disconected from the people that you are with but hopefully after a while you will start to be yourself and it will be a good distraction from hppd/dr.

If I got HPPD in summer when I didn't really have to be around others I think I would have gone completely crazy in a week, I might have killed myself. Distractions are what have allowed me to heal. I have found that none of my symptoms improve unless I adress my anxiety first.

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Nothing in particular, it's just a gnawing feeling in my stomach... Didn't get much sleep tonight either and that usually puts me in a mood of anxiety and distress :P That and a major heartache but i always get that while i'm hungover.

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Yeah same here, it'll be gone tomorrow when im well rested and not hungover :P no booze for me for a while!

I'm also thinking of trying to get klonopin prescribed, read somewhere that it actually can help to repair damaged 5ht2 and 5ht-receptors which lies behind much of hppd (so i've also read) and it reduces anxiety and visuals... The pros outweigh the cons imo but i know that quitting benzos can be a real bitch.

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