Year2

Me? Yes, I 'got' HPPD in 1981. I had bad DPDR for two years or so, but honestly I was still taking drugs far longer than I should have. After a few years it reduced to nothing and steadily improved. These days I'm of the opinion that I always had issues with depression, anxiety and probably OCD. I should never have taken drugs. If I hadn't got HPPD I think I'd be dead. It was a wake up call. My advice is to exercise, get healthy and treat symptoms individually. If you're anxious treat that. I'm also of the opinion that there's something masochistic about the condition. I'm a terrible worrier and if you obsess about the condition it makes it worse. Having said that, the DPDR combined with panic attacks and sudden social anxiety was awful. But I worked on myself in the end, and took myself, as I was at that time as a starting point. I mourned my previous self but it's self-defeating. Positive thinking is an amazing thing.

The DPDR goes away.

My advice is to forget the HPPD title and recognize that you are depressed and anxious. A huge swath of the population has similar stuff. If it's any consolation I had this for about 25 years before I found the name for it online. Pre internet, I had no idea if I was schizophrenic or brain damaged or whatever. I was amazed to find there were others with the same symptoms. The best cure for depression and anxiety is activity. Get on with your life, exercise and the panic etc WILL subside. Accept your present self and work on that.

I've had it for 36 years. The first couple of years were really bad but it does get better. I've said this before elsewhere, but I imagine we all get this at a very young age and it's hard to determine how much of the early angst is HPPD or just growing up, which is hard on most people. Also, despite my mourning of my previous self early on, if I'm honest I had suffered from depression and anxiety before drugs. For me things started to get better when I accepted my present self as myself. We all have growing up to do and, as a 55 year old I'm still growing and facing up to my behavior. Excercise is the best remedy in my opinion. And anything else that gives you a feeling of self respect and pushing on with your life. Everyone has their issues. The visuals become barely noticable. It's the obsessing over this and the past that's damaging. Treat the symptoms individually, not as a whole. If you're anxious, treat the anxiety. Don't kid yourself that a pill will cure this. That's how you got here in the first place. Get healthy. Good luck.

Hello mate. I would say you've definitely got HPPD. Like you I had it a long time before putting a name on it. I've had it for 35 years. There are good times and bad times. It is a curse but I've survived and it's a strange consolation that I see so many 'normal' people on SSRIs and drinking themselves to death. PM me if you'd like to compare war stories.

At the onset of HPPD (1981) I tried excercise and particularly running. After about 5 minutes I'd get a blinding headache in my temples accompanied by a throbbing black blindspot in the centre of my vision. I took up running about 10 years later which was fine, though the blindspot sometimes reappeared. About 5 years ago I was working out at the gym with an instructor. I got the blindspot, told her I needed a rest. I told her what was happening and the blindspot grew and grew until her whole face disappeared. The next thing I knew I was in an ambulance. Someone who was there who has a sister with epilepsy said I had a grand mal seizure. I'm very careful now when I excercise but this has been persistant. The throbbing in the blindspot moves with my heartbeat.

Well I'm in my 50s and I object a bit to being classified by someone here as 'old' However, having had this thing a long time, I can say that one of the positives is mental strength. I've never read of anyone who gets completely lost in the condition to the point they're roaming the streets ranting. Aren't we all aware that the symptoms are unnaturally imposed? One of the annoyingly persistent traits for me is a weird innability to talk properly that I get for a week or two about once a year. I realize now that it'll just pass and that I have to tough it out and it'll pass. Those with dementia are unaware of it. I have become somewhat absent minded the last couple of years but everyone my own age that I know has. As far as worrying about it goes, it certainly isn't worth it. Worry has been another lasting curse but fuck knows if it's HPPD or if I just have general anxiety. It runs in my family.

I'm guessing that you're both fairly young. I was 19 when I got this (I'm 54 now). One of the hardest things is that we change a lot as we grow older and the transition from teen to adult is difficult anyway. I think most of our hearts harden as we grow up but, to be honest, I see lots of fake empathy from people every day. 90% of it actually. I saw this girl recently go "Oh no! That's so awful for you!" when someone told her about the death of a relative. The girl never looked up from her cellphone. So don't feel too bad. But, I do think it's important to feel a sense of right and wrong. One thing I only recently recognized in myself (and I think due to HPPD) is my highly developed bullshit detector. I can spot pretention from a hundred yards and it's weird that I kind of know what games people are playing. Whenever I express these opinions to others it often sounds overly negative or paranoid, so I tend to shut up about it. But I've come to recognize it as a kind of unfortunate skill. Thus, I actively like, or love very few people. But those I do are well within my heart.

Having a job will force you to come up with the goods. I find it the best therapy. I'm a teacher and I just can't be anxious or depressed to teach. The worst symptom I still get about once a year, is periods of not being able to talk without slurring my words. No idea what that's about. I used to lecture in art history and a couple of times I got minor panic attacks wondering how I'd get through it. But I always did and it's satisfying to know that you can tough it out. The dp/dr goes away which is a good thing as it's the pits. Depression is rooted in going over the past, anxiety is fear of the future. Live in the present, stay off all drugs and learn to love and respect yourself. The latter is not a magic wand and every person has to do it. As a university teacher I've had dozens of kids come to me with sob stories of bi-polarity, depression etc. The hard fact is, that the world moves on and we can't expect people to feel sorry for us. Mental health has come a long way in some respects since I got HPPD. I went to my local GP 30 years ago and told him of my anxiety, depression and sense of hopelessness sometimes. He basically told me to grow up and get over it. I wanted to scream at him at the time, but basically it's sound advice. He was of a generation that came back from WWII, possibly suffered from PTSD in silence and had to live with it. My greatest fear was people thinking I was 'mental', which becomes a self-fulfilling prophesy. I believe that I have a very self-destructive streak which I'm aware of and have to temper. I think I did before HPPD and I think that's part of what brought it on. I wonder how true that is for others? Another thing to consider is how many millions of 'straight' people are medicating themselves on drink and a whole host of pills. Why are their lives so awful? It amazes me on these forums the amount of people looking for a cure, or relief in more drugs, legal and otherwise. You can't put something in without taking something away. Clean living and self-respect are the only way. I hope this doesn't come across as a lecture. Just my musings after all this time.

Hi Zandzager. My advice is to get a job and tough it out. To me, the worst mentality is to put your life on hold until you're 'better'. I've had this thing for 35 years, though I don't think about it much anymore and the symptoms are barely noticable. Like it or not, it's now part of 'you' so you have to move forward. It sounds like your symptoms may well disappear but be strong and be ambitious. Most of us (all of us?) get this when we're very young. I was 19. I mourned my previous life too much at first, but the fact is, we all have to grow as adults and adulthood is hard for everyone, especially those who have been living a hedonistic (some would say selfish) lifestyle. The person you want to be lies ahead of you, not behind you. Much luck mate.

You're welcome.

Hello there. I rarely come here but I'm 54 years old and have had HPPD since I was 19. The first 2 years were hell. I'm not sure if the visuals/dp etc improved or I just decided I wasn't going to let it beat me and I had things to do in life. The visuals are still there whenever I want to look for them but you know, it's me. I took too many drugs and I was unlucky. After 2 years of having it and suffering unbearable panic attacks I decided to change my attitude. Probably the worst thing was the feeling of loss. Of looking at a clear blue sky. Of liking myself. But I decided that the person I had become after HPPD was the person I'd have to live with and work on. And that helped. I'm a teacher, good public speaker, visual artist, musician. I'm proud of my achievements. And the person I grieved for initially got me into the mess so I'm glad I'm not him anymore. The most lasting things have been depression and anxiety. But honestly, I think they were there before the onset and probably caused the fucking thing. I've always been very, very obsessive. I hate to sound like an old fart but...I lived with this without knowing if anyone else had it, or being able to put a name to it until 6 or 7 years ago. Thanks to the internet I now realise that the symptoms are uncannily similar in everyone. If anyone wants my advice, get on with your life and do the things you want to do. Don't wait until you're 'better'. Think of yourself as an anxiety sufferer and a depressive. Millions get these. The visuals are annoying but they don't get worse. Excercise. Do things to make yourself proud. At my very worst 35 years ago I couldn't form sentances and sounded like a stuttering drunk. These days I can lecture to packed classrooms. I couldn't have dreamed of this. Good luck on your journey. Remember that life is difficult for everyone.

This may be old news but this was published in the magazine back in May 2013. http://www.newyorker.com/online/blogs/elements/2013/05/a-trip-that-lasts-forever.html

As I said, that's admirable but if you see your life in a negative light until that happens, you may waste much of it.

I have 'had' HPPD for 32 years and I completely agree with this poster. I don't come to this forum very often - about 3 or 4 times a year, mainly to see if there's been any progress and also to lend support to anyone who may have just 'got' this often confusing thing. For the first 2 years I did the usual round of eye doctors with the same results you've all had. I tried dozens of homeopathic medicines. For anxiety a doctor gave me Valium. Getting out of it on further chemicals isn't going to do it. In the end I realized that this was now 'me'. You can't go back to the 'real you'. I had a tendency to look back on my glory days as a late teen with rose colored specs, but the period I was looking at, I was usually out of it all the time on various substances. And why exactly was I self medicating anyway? The only way through is forward. Do what you want in life and face it down. It's really not easy for anyone and a large percentage of the 'normal' population are miserable and hopped up on anxiety/depression meds and/or drinking every night. Society offers us very little. Marriage/house/cars etc...are the carrots most people chase endlessly without getting anywhere. The poster who said 'you don't want to end up middle aged and grey with HPPD' is part of the reason I avoid this place. I'm not making light of his problems but hey...I'm just going through divorce, have lost full time custody of my beloved son and I'm 51 years of age. I'm still looking to the future, have a wonderful girlfriend who appreciates me for who I am and what I do and I look forward to the next 32 years. My ex, hasn't got HPPD and never did too many drugs but does have a miserable drink problem and is constantly unhappy despite a fairly privaleged upbringing and many opportunities. Don't waste your life waiting for a cure and accept yourself for who you are, not who you were. I think it's admirable that people are putting their heads together here and asking questions but it's the negative obsessing that drags you down. As the above poster said, pretend you're ok and eventually you will be. I still get black/white microbe like specs if I look for them (I rarely do) but the awful DP/DR stopped after a couple of years. I am prone to stress (but maybe I always was). I teach and the worst symptom that comes back occasionally is an inability to form words without slurring or stuttering. I saw one other post regarding this. As I have to lecture classes this can be difficult at times (happens once or twice a year) but experience has told me to soldier on and it goes away after a few days. Do yoga. Excercise. Meditate. Fall in love. Be fascinated in the world. Confront your worst social fears and you'll be ok. I embarrassed myself with my weirdness for years but it gets better. One interesting thing is that I never remember HPPD as part of any life events or experiences after the first couple of years. The first two I remember as a bad trip. But I decided to move on. Good luck.

Very true. We used to go to my ex's sister's house every Christmas. Her and her husband are very respectable, straight people living respectable, straight lives in a great big house in a nice neighborhood. Her husband'd get back from his job, drink 2 huge tumblers of 15 year old malt and pass out from 8.00pm til around 3.00am. She'd hit the wine. Difficult as hppd has been to live with at times, it did teach me that self medication and endless hedonism was not the answer. I think it's important for us all to realize that much of the US drowns their anxiety in drink and prescription drugs. And I'm not talking about the obvious druggie culprits. I'm talking about the middle class who've gone through the mill and have found a total dead end waiting for them. I saw Dr Abraham a few years ago. As well as having the satisfaction of being able to name this weird thing I've had since 1981, I realized I am at times an anxious person. So are millions of others. Excercise, nutrition and knowing what you need to do with your life are the answer.

I agree with you. It gets very philosophical but I think hppd encourages this naturally. You do start to question the validity of your senses. My big mistake when I first got this was the yearning to get back to my 'real' self. The fact is you've been reborn as a somewhat different individual and you have to work with that. For me the worst was the panic and DP but that disappeared after a few years. I'd like to explore the spiritual aspects of this condition more. I'm sure there must be a hightened awareness of certain energies.

I just watched this last night on Netflix. Somewhat different from what we've all been through but I found it relatable nonetheless. It's about this guy whose best friend died in a motorcycle accident and afterwards he developed the ability to see ghosts, balls of colored light and auras of energy around people. I've had hppd for 32 years now. It's not something I think about a lot and I tend to discount the theories that suggest this is an advanced kind of vision. However, I seperated from my wife over 2 years ago. On one of the last nights in the house I was sitting greiving in the living room in the dark when a ball of green light appeared at the other end of the room. It wasn't frightening. I looked down then up after about a minute and it had gone. My girlfriend practices yoga and says it was my heart chakra. The guy in the doc saw a ball of light come out of his friend's chest a couple of days before he died. He didn't specify the color. I avoid new age things like the plague in general but I do wonder. My 'bullshit detector' developed at an alarming rate after I got hppd too. I thought I was paranoid about people for a long time but I'm almost always correct about sneaky, underhand people. It's a curse. I'm not a nut and I retain a healthy skepticism about this but...anyone else have similar experiences?

I agree with Jay. I know 12 people who've died from drugs and I probably would have been on the list. I saw a TV movie shortly after getting HPPD about a female gymnast who lost her leg in an accident. She was depressed (obviously) and wouldn't face it. Her trainer got her to touch her stump, clean it, get used to it. It was probably a fairly cheesy film but the message stuck. After that I figured 'well this is me, now'. Living with this can make you really strong. Go beyond it. Navel gazing will make things worse. There isn't a magic pill so be positive and move 2 steps forward, 1 step back and eventually you'll forget about it most of the time.

I work out every other day - running and weights. I often get a pulsing blind spot which usually goes away within an hour. In November the trainer took me through a more vigorous workout and after about 15 minutes the blindspot appeared and got bigger and bigger. It looked very like optical migrane symptoms. She was talking to me and the last thing I remember was saying to her 'your whole lower face has disappeared. She told me to sit down and the next thing I knew I was in an ambulance. Apparently I had a grand mal seizure. I don't know if it's HPPD related. I turned 50 last year so I'm no spring chicken but it's a worry and I've never had this before. Not had a reoccurance since though.

Ah celebs with HPPD. Somebody posted an excerpt from Kurt Cobain's diary where he described VS. Anyone ever estimate how many people worldwide have it?

I understood that Gmo and I was talking about the DP etc.... Good luck.

Hmmmm...that's a tough question. It was much of the time for about two years and then I'd have episodes where it'd come back. I'd say it completely disappeared after about five years. One of the hard things with all this is it's difficult to know how much is self-imposed and, if there's a way of minimising it through positive thinking. Looking back, I think I was very masochistic in that I could sometimes wake up in a positive mood and I'd almost impose this negative, self obsession onto what should have been happy experiences. I think this may be an unfortunate natural disorder with me. But, also looking back, the DP and nervousness disappeared in direct proportion to my sucesses in life with relationships and my career etc.... You can't expect self-confidence to come out of nowhere and sitting at home on sedatives doing nothing won't change a thing. I think I reached a point of acceptance where I said "OK...it's a pain in the arse but, like or not, this IS me and I have to deal with it and work on myself". I would not reccomend telling people about it. As a teacher, I often get students telling me at the end of a course that they're bi-polar or depressed or some other excuse. I have to look at their work with the same criteria as everyone else and no one in this world has an excuse. I saw Dr Abrams a couple of years ago and he confirmed that I had HPPD. It's great to put a name to this but he also thought I had/have anxiety disorder too. So, I need to treat that individually (without medication) as well as any other symptoms. I'm not expecting a cure for this thing. I like myself and know that I can exist sucessfully in the world. My memories of important events over the last 30 years do not include visual snow or floaters etc....but they were there. Life is for living and I think it's important to go beyond this condition...not to fight it.

I've had this for 30 years but the DP went away a long, long time ago. It gets better. I'm guessing you guys are young (I was 19 when I first got symptoms). One thing to realize is that we all change as we get older anyway. I used to mourn my old self but, if I think about it, a lot of that was my old self on drugs. I DID become much more serious and my personality DID change to an extent. But probably for the better. I would say go with the flow and accept it. I was so nervous I couldn't talk to people after I got HPPD. This, going from someone who was very outgoing, liked making everyone laugh etc.... But, I'm now a teacher and am fine with public speaking and crowds and all the rest. You will come back but I read of a lot of people hiding away. Confront your fears and try not to obsess. Get involved in stuff...positive stuff. The first 2 years were the worst and...I had no idea anyone else had this until two years ago when I googled it. At least you can put a name to it and know it's not madness or brain tumors.

Having had HPPD for 30+ years I think you're correct. The answer is to get involved with a positive obsessive pursuit. I'm an artist/musician and both are obsessive, though positive occupations. You could spend the rest of your life obsessing about specks flitting about on a wall. The choice is yours.