K.B.Fante

Wow, thanks guys. Great information here. I do feel enlightened. It's interesting... I first started taking one pill of Lorazepam every other night or so about a week ago because I had anxiety and couldn't sleep. Then towards the end of the week one wasn't putting me to sleep so I upped the dosage to two. That worked great and I felt great during the daytime but realized I couldn't keep up on this pace with how many pills my doctor allows, plus I don't have anxiety anymore, so last night I tried to go without any and was wide awake at about 2:30 a.m. and couldn't go back to sleep -- even without anxiety. Just goes to show how quickly the brain adapts. I almost had mini withdrawals today. It's pretty painful recovering the natural way but I'm gonna keep trying. Thanks again for the info and sorry to seem so naive on this issue. I'm fairly new to medication at this point.

So I've been prescribed Lorazepam for anxiety and for HPPD, however my doctor only wants me to use it as a last resort because it's a controlled substance and people get hooked, therefore he won't prescribe me very many pills at one time. This has been fine for the most part, but I've been having trouble sleeping lately so I've been taking a lot of my benzos and am therefore running out. The other problem is that Lorazepam really works for me. It really helps my symptoms and has no negative side effects. It would certainly make my life a hell of a lot easier if I could take a bit more but of course I can't because too many people out there abuse them when they don't need them and people like me who really do need them end up paying the price. My real question, however, is how people even get addicted in the first place. Even when I take two pills, which is more than my doctor recommends, I still don't feel anything except a little bit of warmth inside my chest -- that's it. So how is this that great? What is it that makes people addicted? I understand alcohol, weed, cocaine, yada yada yada, because you can actually feel those, but I can't really feel the benzos that much, so I'm a little bit confused here. Perhaps someone can enlighten me. I'm sure there's a logical answer -- I just can't see it right now.

Sounds like you have HPPD for sure. All the symptoms match up. The real test should be time. If you still have these after another few months then you can know for sure. But I'd say it sounds like you do.

As far as I understand most people get HPPD within a few days to a week after taking the drugs. It took me about three days before it kicked in. And I definitely knew it. I just woke up one morning and everything in my room was moving like I was still tripping. Your case seems a bit different. I don't know about neurological damage. Perhaps you should consult a neurologist.

Totally agree Lance. Free time is a killer -- quite literally. Whenever I've had free time since getting HPPD I've often obsessed about the symptoms to the point of contemplating suicide. You have to stay busy to make it through.

I'm with Jay. We all wonder. It's only natural. But you'll never know. Maybe life would have been great. Maybe you would have won the Lottery. Maybe you would have been hit by a train after partying too hard one night. Life is nothing more than a series of infinite possibilities. To speculate about one is pointless. Why not make the most out of what you've been given, and all the infinite possibilities that await you every day of your life?

For a while I had really back neck pain as well. I think it just has something to do with our vision being so messed up and in turn our sense of balance. Exercise made mine go away completely. I haven't had a drink in six months and don't plan to have one anytime soon. Once I'm fully healed I'll tip a few back and see what happens. My best advice would be to go sober. Dizziness is pretty common. Seems to go hand in hand with the neck pain, sense of balance being thrown off by all the swirling and moving objects in our vision. A few weeks ago I actually had to pull over while driving because I was so dizzy. Sugar, caffeine, junk food and of course alcohol and sleep deprivation all play a big role in this as well. As long as you eat healthy you should keep your dizziness at bay.

Does anybody keep a diary? I would suggest considering it. Writing is proven to be very therapeutic. It can help us cope during tough times and put life into perspective as we progress in age. Perfect example: I'm rummaging through past notes that I started taking a few months after getting HPPD and it's quite startling how bad I was and how much I've forgotten about the severity of the mental state I was in. I have lots of notes but one that caught my eye says, "There is something comforting about lying on the floor when in the throes of an altered mental state -- gravity is the collector of the dead." Though I'd be lying if I said after seven months I still don't have suicidal ideation, what's also true is that the difference between the person I am now and the person who wrote the above note is immense. Just five months ago I was so distraught that was lying on the floor of my room thinking about nothing but dying. I now have two jobs, an apartment, I'm going on dates and I'm physically in the best shape I've been in for years. HPPD recovery is extremely slow and extremely painful. But I urge everyone to keep fighting. As long as you stay healthy I truly believe you will get better. It just takes a lot of time. Though I have a long ways to go it's moments like these that make me realize that life is worth living and that I can never give up -- all thanks to a diary.

I remember your story because I was in Australia not too long ago as well. When I first got HPPD I kept thinking I was getting a lot better, over and over and over. After two weeks I thought I was getting better. After a month I thought I was getting better. And so on and so on. The problem with HPPD is that it's so painful and miserable that you can actually convince yourself you're better off than you really are. I did this for six months before finally realizing how slow the process of recovery is. My advice: Don't trick yourself into believing your doing good. Rather, be very aware of all your symptoms and accept them for what they are with the knowledge that if you stay healthy you will improve. Don't do anymore drugs. You can still have fun but drugs will make your HPPD worse. You should just try and get outside everyday and enjoy the rest of your time on vacation then focus on getting better when you get home.

1. Don't have that and haven't heard of it either but HPPD has a huge spectrum of symptoms so I wouldn't worry about being "out of place" with just one. Everyone seems to have some sort of symptom that's more rare than the others. 2. Join the club; welcome to HPPD! It sucks. It really, really, really, really sucks. And it's incredibly painful almost all the time. The key to making it through is just to live for tomorrow. Don't live for now, or the past, but for the hope of the future. No matter how crappy your day is, it's always going to be better. Try and keep the big picture in mind. If you take all the right steps towards recover and ever fully recover then this will be nothing but a memory. You have to always live with the idea that one day you will recover. 3. Everybody is different. But it seems like there's a clear pattern between cutting out drugs and improving. Exercise is a big one too since it's scientifically proven to be one of the best things you can do for reforming your brain. But the biggest thing is eliminating substances that make your HPPD worse. Once you do that, in combination with time, you should see some improvements. But again, it could take a while -- as in years. HPPD doesn't just up and leave one day. It's a long road to recovery. But if you eliminate substances and live a healthy lifestyle I'd say you'll probably be feeling pretty good within a year or two and after a couple years you might even consider yourself back to normal. But again, everyone's different.

I've wondered this too. I don't drink and don't plan on drinking until I feel my HPPD has gotten to a place where I feel is somewhat back to normal, but I would like to drink one day. I just worry it could cause my symptoms to flare up again or that it could cause longterm damage.

Yeah, I think I'm gonna hold off for now but I'm really interested to see the progress you guys make so be sure to keep us updated.

Thanks, really appreciate the advice. I totally agree about acceptance. I think part of the problem is I've never had any idea how long it would take to recover, so I just assumed it'd be a matter of months, perhaps a year at the very most. So over and over I kept telling myself I'd be recovered by a certain date and over and over I'd be devastated when that date came and passed and I wasn't where I wanted to be. Just recently I think I came to accept that I'm gonna have this for AT LEAST a year, and most likely much longer. I don't have a timetable for recovery. I've finally accepted who I am now and it's been a huge relief. I know I'll be better one day -- I just don't have any idea when that will be. But like I said, as long as I can get my brain fog under control I think I'll be alright. That's the thing that kills me most.

Encouraging stuff. So what symptoms do you still have? And how noticeable are they on a daily basis? I feel if I can just get to a point where I can enjoy life again that I'll be happy. But I need my symptoms to decrease enough to allow that to happen. I feel after seven months that I'm getting there, but it's still a long road to recovery. Once I can read and have long conversations without getting brain fog, I think I'll be pretty content.

Hey Jay, can you keep us updated on this? Just in terms of when this is all happening and who's participating and how it's going. I'd love to hear. Thanks.

Oh I see. Well then my answer would be yes. There are people who are probably way more qualified to talk about this than I, but from everything I gather it sounds like HPPD is somewhat hereditary. This is why people get it after only a few times on drugs while other people can do drugs their entire lifetime and have bad trips galore and never get HPPD. The crazy thing is, I've done lots of different types of drugs, smoke tons of weed, went through a brief stage of alcoholism and yet it was acid that did the trick for me. There were times in my life where I was tripping my ass off on mushrooms, where I did cocaine all night long, where I took so much molly I was hallucinating and didn't know where I was, and yet all it took for me to get HPPD was one single hit of acid after I'd only done acid a few times before. For me, I just think acid was the magic recipe. For other people, I'm sure their HPPD drug was different. My point is, you should raise your kids to value education and stay away from drugs. Every parent should. But you also have to be realistic. Your kids are gonna do whatever they want eventually. Your best to be honest with them, explain how they might be genetically exposed to HPPD, and tell them to absolutely stay away from whatever drugs you got your HPPD from. I know if I have kids I'm making it crystal clear they can't do acid. That's the one thing I just don't trust. That's my best advice. If you raise your kids right, make them aware and tell them how bad it is, they'll probably stay away.

I understand your pain man. Most of us do. We've all been there. I had some bad thoughts the other day. And I don't blame you for wanting to get drunk and forget about it. I'd actually encourage you to drink a bit and have fun as long as you're 100 percent positive it won't make your symptoms worse long term. BUT, taking a semester off just to drink is a terrible idea. You can do that when you're going to classes. You should try and work on something, strive towards something, do something significant, something that will make you feel good about yourself, like volunteering for different humanitarian causes or something along those lines. It doesn't have to be anything crazy or expensive but ample free time mixed with HPPD is not a good recipe for success -- trust me on that one. And if you're depressed, drinking is only gonna make you even more depressed. Then you're gonna be even worse off than you are right now. I don't think that sounds like a good idea. You have a choice. You can either give in or you can keep fighting. It sounds like you're close to giving in. Again, I've been there... many times. But you just have to find a way to make it through. If you want to drink a few days and get it all out of your system, please be my guest. But doing that for months on end is just an absolutely terrible idea.

I've never heard of anybody with HPPD giving it to offspring. It sounds like people who get HPPD might be genetically exposed but you still need to do the drugs to get it. Doesn't seem logical that your children would be born with this without having done the drugs themselves.

I'm going to add to this list two things: the unrelenting nature of HPPD (I'd say this coincides with the lengthy time element -- just never feeling like you can escape) and the general sense of unreality. One of the absolute worst parts of HPPD is that it feels like you're constantly being hunted. You can never stop for a rest or reset or just step back into reality briefly for a day to gain composure and breathe. Every single waking moment of your life is like you're being cornered by some giant hungry beast that won't leave until you've been totally devoured. I think this is part of why suicide seems so appealing to those suffering with HPPD. You know death is the only escape. There's no other way out than death, no pills or treatment or anything else in the natural world. And so it feels like death is really your only option if you decide you can't take it any longer. Also, with regards to the unreality -- how are you supposed to live when you can never look at yourself in the mirror and feel it's you looking back, when you can't look at your hands and feel they're your own, when you can't look into someone's eyes and feel your true soul reflecting back rather than some dark twisted version of yourself. Reality is what keeps us level headed throughout all the crazy everyday emotional occurrences; it's our home base to check in on when we feel we're straying away from ourselves. But when you never have access to that place, as is the case with HPPD, it's impossible to ever know true safety or peace or even yourself. It's just this intense and perpetual sense of being out of your own shoes, not entirely someone else but neither yourself either, almost like a ghost.

I've noticed this too, how as you go on certain symptoms die off while others take longer and linger around. For me, trailers following moving objects, brain fog, visual snow, macropsia and a slow frame rate are the five that still affect me more than anything. I notice these pretty much every day still, but not too much and as long as I stay busy then hardly at all. I also still have small traces of paranoia, depression, etc., but these are rare and only once every few weeks or so. I figure in a few months I'll be down to three or four, then just a few and sometime within the new year I'll be fully back to normal, just judging by the rate at which my symptoms are improving. It's still a struggle but I'm very grateful to see as much improvement as I have. No drugs, hardcore exercise, staying busy, meditating and eating right has been my recipe for success.

Wow, this sounds interesting. The second option where they ship the equipment to you is obviously a lot cheaper and more convenient. But I don't really know the details and what would work best. I'm sure actually being in London and doing this face to face with these specialists would also pay dividends as well. I'm doing pretty good in terms of my recovery so I think it'd be best if someone else who has severe HPPD and has had it for a while gets in on this. I'd be willing to help out a bit financially if people needed. I can't contribute much but I figure if everyone gave a little it would really help.

Honestly, I can't imagine weed helped. Like mg says, it's a low-level hallucinogen. Smoke enough and you'll get minor HPPD symptoms even temporarily. I remember when I smoked weed a lot I'd get DP/DR and see patterns. So my guess is that if you've smoked a lot of weed since getting HPPD it probably contributed somewhat to your symptoms, however that's just a guess and there's no telling how much. The fact is, drugs and HPPD is one cocktail that doesn't mix well. I've heard plenty of people talk about their HPPD getting terribly worse after doing drugs; I've heard nobody say their HPPD has improved after doing drugs. Pretty easy to see a pattern there.

Yeah, from the sounds of it cocaine is pretty bad for HPPD. I'd probably stay away from that. I don't think marijuana is too good either. There's a lot of people on this forum who still smoke weed, I just don't know how many still have HPPD or what they can say about how it's hurt their symptoms. You're probably best to stop doing drugs unless you think you can't cope without any. And I don't think it's ever too late to improve as long as you're dedicated enough.

I actually decided to postpone for five months until I felt me HPPD was better. I don't think there's anything that could make it worse but there are a lot of different tests that include electricity and sleep monitoring that I just wasn't sure about. If anybody has anymore information on whether certain medical testing equipment has exacerbated symptoms please feel free to post here!

There's a study going on at my university about traumatic experiences on the brain. I figured I was a prime candidate so I thought I'd volunteer. But I did want to check in with the community to see if this would be safe with HPPD. Are there any known brain tests that can worsen HPPD? I know for sure there's going to be an fMRI but there will be other things as well. Any precautions I should take? Should I pass on doing this altogether? Thanks.