K.B.Fante

Was listening to Sam Harris' podcast today and he started talking about Elon Musk's venture into brain science and how he's trying to develop technology that would supposedly assist those with brain damage who haven't been helped by traditional medical routes. Sounded pretty promising from an HPPD standpoint. Here's a link with a basic rundown: http://www.wired.co.uk/article/elon-musk-neuralink

I had this really bad and still do to some extent. My eyes felt frozen inside my head and could barely move to track anything that moved fast. I don't think there's anything that helps other than time and the healing process, although I always felt better after working out.

I used to go a lot when I was in school and just remember times where the whole place was covered in smoke. Obviously I'm a bit nervous about that scenario now. I think it depends on the concert but I'm pretty sure there's gonna be a decent number of stoners at Tom Petty!

Be careful with taking too many supplements, especially if you're already on other pharmaceuticals. Often times even one supplement can make your symptoms worse, but combining a lot is almost guaranteed to exacerbate your symptoms to some degree.

It's easy to be pessimistic but there's lots of reason to believe HPPD will gain traction in the public eye soon and therefore generate funding, research and a possible cure. First off, the number of people who have HPPD is likely much larger than any of us think and as Visual Snow Syndrome comes into the public conscious many more will likely come out and share their stories. Also, with the renewed interest in studying LSD and other drugs for scientific purposes there will be more awareness of its dangers, including HPPD, which could lead to more interest from the scientific community. And finally, there's just way more awareness of mental health problems in general these days and with an increasing number of states in the U.S. legalizing weed it's only a matter of time before people report more cases of panic attacks leading to DP-DR and HPPD symptoms as well. The biggest problem right now, as I've stated before, is that there's no unity between the Visual Snow Syndrome community, the HPPD community and the DP-DR community. These disorders all overlap and to some extent seem to be cut from the same cloth yet because they're fragmented there's no real opportunity to gain momentum, awareness and funding. It would be greatly beneficial if these communities could somehow come together, acknowledge their similarities and work together to bring awareness to our struggles. There are so many smart and capable people, but unfortunately these conditions are so crippling I think people are often hesitant to try and make stuff happen.

I just got to a breaking point about this time last year where I decided I was gonna do whatever experimentation I could to see if it would help my symptoms and diet is one of the areas I tried to focus on. I did some studying and arrived at paleo probably because I'm more into natural health and thought it was the diet that best corresponded with that belief system. Truth is, I knew nothing of dieting or health at the time and just thought, based on everything I read, that it sounded like it could help me the most. I've since realized that all diets are pretty much fads and that healthy eating is not complicated: eat mostly vegetables, fruits and whole foods; eliminate excess added sugar; and take it easy on dairy, gluten and meat -- at least this is what works for me. In terms of carbs, I wouldn't say I'm deficient but I also don't go out of my way to eat starchy foods. I eat lots of fruit, which of course helps, as well as beans, healthy grains and starchy veggies here and there, but I've honestly eased up lately because I have a hard time processing lots of carbs due to additional health concerns. In terms of keto, I've heard of it working for epileptics, so given how well some of us respond to anti-epileptic medication I guess I could see the connection there as well. Wouldn't that mostly be due to high fat which feeds the brain? Also, I thought fire was what helped our brains grow abnormally large?

Yeah, I thought of that too, I just don't know of any such studies that verify the existence of lids in other drugs. If so, then perhaps there could be something to it. But then again, how could this account for Visual Snow Syndrome, wherein people get the same set of symptoms without the use of drugs? And the same goes for benzodiazepine withdrawal and other neurotoxic chemicals that can induce HPPD-like symptoms. If I remember correctly in the recent brain imaging studies from LSD there are certain parts of the brain that become more active and others that diminish, which is part of what alters consciousness during the trip. The links above therefore make me wonder if those parts that become less active just never properly reboot, which could account for why the symptoms of HPPD so closely resemble those of the actual trip.

Tom Petty at Red Rocks. There's always massive amounts of pot floating about no matter who's playing so I'm just not sure that's the best environment to be in even though it is outside. I really just don't think I could handle a set back after how hard I've worked for the last two years to get where I'm at.

I mentioned this once before but just thought I'd make a post to bring awareness to this subject. Basically I went on a paleo diet about a year ago and long story short it certainly helped my overall health but didn't solve my HPPD as I had hoped (I was desperate, obviously). Part of the paleo diet is to cut out potatoes, refined carbs, along with all sorts of other foods we don't even think twice about eating -- which I did -- and I felt pretty good overall. But, as the months went by it was pretty clear it wasn't solving my HPPD and so I began to incorporate some of the forbidden paleo foods back into my diet, including potatoes. What I've noticed recently is that when I eat excess potatoes or any other vegetable from the nightshade family I sorta feel the same way I do when I drink caffeine. One night I woke up sweating with a racing heart and crazy anxiety for no reason at all after eating a lot of potatoes. And today after eating a whole bell pepper for lunch I felt almost as if I'd drank a small cup of coffee as my symptoms seemed to flare up and I just felt nervous and sorta crazy. Anyway, I just thought I'd post to see if anybody has experience with this. If not, perhaps it's something to consider keeping an eye on. Here's an article about how nightshades can cause anxiety in people with nerve sensitivities: https://www.psychologytoday.com/blog/diagnosis-diet/201607/these-5-foods-and-substances-can-cause-anxiety-and-insomnia

Huh, interesting. A lot of people have reported pupil dilation but I guess it just goes to show how wide ranging HPPD is and how it varies with each person in every case. Speaking of second-hand smoke, I have tickets to go to a concert next week but I'm starting to wonder if I should even go since I know there's gonna be tons of second-hand pot smoke. I just don't think it's worth it even though I've had the tickets for a year and paid a lot for them.

I also think the global workspace theory of consciousness is interesting in connection with DP-DR symptoms wherein people feel numb, like they're stuck in a dream and are generally disconnected. I'm a firm believer that we select words for a reason and that when we say we feel "disconnected" it's because we are.

I posted a link to an article that talked about the receptor lid a few weeks back and thought perhaps HPPD is a result of that lid staying permanently shut -- but then again, why do people get HPPD from all sorts of different drugs that don't have this same effect? That's what I keep coming back to. HPPD is obtained in so many different ways through so many different types of drugs that affect so many different receptors. I just think it's strange how the symptoms of HPPD are basically those of the actual trip. As the popular aphorism goes, it's a trip that never ends.

You're basically giving yourself two choices: Smoke weed so you can fit in and risk having severe stress and HPPD the rest of your life, or be open with your friends about your condition, how you're struggling and how you can't do any drugs, and recover and live a normal life again. Try and take a step back and realize how short sighted it would be to smoke again and risk damaging your brain forever.

What are your symptoms?

I've always noticed my pupils have been constantly dilated since getting HPPD but as my symptoms have improved they've shrunk correspondingly, so that essentially the worse my symptoms the more dilated my pupils are. So my question is: Does anybody have HPPD -- specifically more severe symptoms like morphing, DP-DR, long streamers, etc. -- and not have dilated pupils?

Valerian made some of my symptoms worse so I don't know that I'd recommend it. Others may feel differently though. I haven't tried NAC.

Absolutely not. There is no cure for HPPD. Benzos do a decent job of masking the symptoms but as far too many here will tell you (including Charlie above), benzos also come with all sorts of potential problems and sometimes can even make your HPPD worse if you ween off too fast. Everyone's situation is different. For long termers and those with great discipline benzos can be helpful. As someone who has had a very very painful experience due to benzos I'd recommend staying away from them and trying to heal naturally through healthy diet and lifestyle, but that's just me.

Of course, that's what happens when people fully recover. I think the problem is that some people have really bad HPPD and therefore really bad streamers and it just takes them a lot longer. There are many stories on here of people recovering after a year or two and many of those who've recovered after five-plus years. Clearly the disparity depends on how severe your symptoms are to begin with and how healthy of a lifestyle you live in order to get better. I know in my case my visuals have drastically decreased over the course of two years but are still very much there and given the severity of my HPPD I imagine it'll take another few years for them to completely disappear. The good news is I'm finally at a point where they don't bother me that much day to day -- and that's really the first time I've been able to say that in over 700 days since getting HPPD.

Exercise is important but equally important is to not overdo it. If your brain doesn't handle lots of exercise then you should listen to it and take it easy. It sounds like you may have been overworking yourself before you got HPPD so that could be part of the problem. This is why yoga could be beneficial. I really think, as Fruitgun said, yoga is especially good for HPPD because it activates the parasympathetic nervous system which seems to be inaccessible for a lot of us with anxiety. I would recommend hot yoga if possible. I've always, always felt way better after doing hot yoga. I would say just remember to go slow with exercise. Start with light jogging, yoga, a bit of weights, and then steadily increase. If your brain is feeling overworked then listen to it and stop. You'll be able to work out hard again but you need to gradually work up to it. If you're not meditating already you should be. Meditating has helped me tremendously over the last few years since getting HPPD and has totally changed my life. Here's a post I made about food a while ago that's really helped me: http://hppdonline.com/index.php?/topic/5344-a-routine-thats-helping-for-newcomers-especially/ You said you drink tea, which is great. Tea had helped me a lot. Just watch out for caffeine. Green tea, black tea, oolong, etc., all have caffeine. I'd recommend chamomile, tulsi and especially hibiscus since it's one of the best antioxidants. You need to eat as many antioxidants as possible to help your brain. Cutting back drastically on sugar, refined carbs, alcohol, etc., will also help your brain a lot. Turmeric is a good one too. As far as friends go, you should definitely still hang out with them if you feel comfortable, but I know it can be really difficult. Just tell them what happened and that you can't do drugs and you need some time to yourself. They'll understand.

Agree with Fruitgun. The last thing you should do is panic. Three months is nothing. You really need to understand that you might have this for a long time but that if you're healthy and stay away from drugs you will likely recovery fully. Again, it may take a few years. I had very severe HPPD when I first got it. My brain could hardly function, everything looked completely 2-D, anything that moved ever so slightly blurred across my field of vision -- it honestly like living inside a video game and I had to deal with it every single day. I don't know how I've made it this far but after two years I've made tremendous progress. But I've been really healthy with my diet which has helped more than anything. I suggest you start eating as many whole foods as possible, cut back drastically on sugar and of course don't to any drugs whatsoever, including caffeine and alcohol. Like Fruitgun said, your brain is injured in some way. It needs time to heal. But as long as you give it time, rest and the proper nutrients it needs to regenerate you'll likely be back to full health again. There's lots of great information in this forum so I'd read it up and down if I were you. Stay positive!

Not sure it's that simple. There's all kinds of things that could go wrong with those receptors that wouldn't necessarily respond to stimulus.

Any news on the HPPD front in terms of funding for studies, awareness, anything at all? It's troublesome knowing so many feel helpless and that this condition is still so far from being addressed.

Me too. The brain in general is just fascinating. This article makes me wonder how much the 5HT2A receptors play a role in HPPD, but then again I always come back to the fact people get HPPD from all sorts of different drugs that don't affect 5-HT receptors, so it can't just be a serotonin receptor problem, right? At the same time I've also thought it so interesting how HPPD symptoms are so similar to the symptoms you get while tripping, which makes me think serotonin receptors are therefore the culprit. I just wish I knew...

I think I already posted this somewhere but I can't remember so I'll post it again. Pretty interesting read... http://blogs.discovermagazine.com/d-brief/2017/01/26/lsd-trips-science/#.WRqGRFPyv-Z

As someone who's had visual snow twice now, and both times as a result of drugs use, all I can say is stay away from drugs -- especially weed. It's a psychoactive substance and those have the worst track record in terms of HPPD. I remember my snow actually worsening in high school when I'd smoke, but I just thought nothing much of it back then because I didn't have all these other crazy HPPD symptoms that went along with it. I then stopped smoking in college and it cleared up, but once I took acid about five years later that's when I got full-blown HPPD which I wouldn't wish on anybody in the history of mankind. I think you're safe drinking but just be sure to ease into it, don't binge and make sure you monitor your vision the next day to see if you have any symptoms. If so, go clean again and consider never drinking. I know you're young but you need to take our advice when we say drugs aren't worth messing your brain up for your whole life. Again, I really think just as long as you consume alcohol in moderation you should be alright though.