K.B.Fante

Sugar does the same to me. It used to give me absolutely horrific brain fog but ever since cleaning up my diet and eliminating excess sugar my brain fog has almost entirely disappeared. I've been eating lots of fruit lately and have noticed my body is not handling it well at all. Though I don't have brain fog anymore I'm really lethargic in the morning after I eat and I almost fall asleep during the day afterwords. Sugar doesn't increase my visual symptoms but what little psychological symptoms I have seem to get exacerbated quite a bit, which is the same thing that happens when I ingest caffeine.

Jay is right on. I was actually thinking about the idea of "pre-HPPD" last night because we were talking about it in the Caffeine thread. In the article Sara links to the doctor mentions if you have visual snow to stay away from drugs. Well, I had visual snow in high school (which I also may have contracted from drugs), but I kept doing drugs and then I got full-blown HPPD and DP. If someone had told me about this I never would have taken acid and never would have gotten to where I am now! So yeah, just don't do drugs ever again and you'll probably be fine. Also, working out, eating healthy and perhaps finding a therapist will help you a lot.

If you have HPPD you'll definitely notice it. If all you have is visual snow consider yourself extremely lucky.

This is the thing: Whether you have Visual Snow Syndrome, HPPD, Depersonalization or any other cognitive disorder with similar symptoms, it's abundantly clear these disorders all overlap with many shared experiences and yet each have different ways of arriving at these conditions. HPPD is obviously triggered by hallucinogens but many people with DP are triggered by weed or panic attacks while some people are simply born with Visual Snow -- and yet the symptoms are the same. Just in terms of HPPD, it's worth noting people end up here after taking all sorts of different drugs that have different effects on different brain regions and neurotransmitters, and yet again they share the same symptoms. If HPPD was exclusively the result of some sort of serotonin dysfunction then why do people who take benzos (GABA) amphetamines (dopamine, norepinephrine) ketamine (NMDA) and pot (cannabinoids) also end up with the same symptoms? Genes play a role in everything, but then again so does your environment. For people who seem to be born with this condition perhaps, as you suggest, there's a genetic disposition but what about those who take hundreds of drugs before getting the same set of symptoms? If it was just genetic they would have gotten HPPD from the very start, no?

I guess I was just repeating what I heard on the radio. The challenge raised over $100 million in the U.S. so I imagine all that money has done something to help get research where it's at today with all their new breakthroughs. I didn't realize Visual Snow Syndrome had so many overlapping symptoms as HPPD. I always just thought it was snow and that was it, but reading Jen Ambrose's Go Fund Me page she even mentions depersonalization-derealization symptoms. Clearly there's a connection between VSS, HPPD and DP-DR. They're all basically a list of the same overlapping symptoms with variances depending on severity and drug use. Therefore any research into any one of these conditions will likely prove beneficial to the others. On a side note, the visual snow study Ambrose links to at one point mentions how there's noticeable hypermetabolism in the lingual gyrus and cerebellum -- in fact, those are the only differences they note when compared to the control group. Hypermetabolism is often the result of injury and the cerebellum is particularly lined with Purkinje cells which are GABA-related neurons (and in a roundabout way we're again back to GABA). The study also mentions how cerebellar disease is linked to difficulty with depth perception and vertigo that can be caused by "infarct," which is a small localized area of dead tissue due to loss of blood supply. I guess I just find this interesting because my poor depth perception is probably the most severe of all my HPPD symptoms and the neurologist I saw a few months ago also mentioned I had symptoms of a stroke. When I was on the acid that gave me HPPD I distinctly remember the feeling of being on the verge of a bad trip, being completely overcome by a sense of childhood fear and feeling a sudden jolt as if I were being sucked to the back of my mind. It was the weirdest feeling ever, but it only lasted about 10 minutes or so and then I was able to come out of it. Nevertheless, I've since been convinced it was that 10 minutes where I contracted HPPD, I'm just not sure how or what happened. But given all the connections to strokes I keep coming across, knowing how bloodflow in the brain changes during hallucinogenic drug use and the role anxiety and nutrition plays in brain health (I had terrible anxiety and diet in the months leading up to HPPD), I don't think it's far fetched to imagine a temporary loss of bloodflow could have caused brain damage -- at least in my case.

Very true Sara. I've thought about this a lot. A big reason why there's not a stronger push to discover treatment or even a cure for HPPD is due to lack of awareness. I know one member (hope1, I believe) set up a website recently to try and push funding and awareness but I'm not sure if he got very far. Here's an interesting news story I heard the other day on the radio: http://kuer.org/post/university-researchers-take-step-forward-treating-neurological-diseases#stream/0 Essentially the "Ice Bucket Challenge" from a few years ago that went viral and helped raised millions for ALS research actually had a huge impact to the point where scientists are closing in on a possible cure. The same could be done for HPPD or any other disorder, it just takes some effort!

This is what I find so interesting about it. Normally, even though I still have most of many of my HPPD symptoms and even though I know it's gonna take a while before I'm completely healed, I'm OK knowing this because I've already made so much progress and I'm finally in a good place with my condition. I also generally have no problem ignoring my symptoms most of the day. But when I have caffeine it's like my entire perception changes, my personality, everything, and all I do all day long is obsess over my symptoms and how I still have HPPD after two years. Again, it's not just that my symptoms appear to worsen, it's a total transformation of my psyche and perception, which I find fascinating considering there are people out there who can drink two cups of coffee and fall asleep an hour later, wake up refreshed and feel no change in their personality whatsoever. The article above mentions how caffeine essentially binds to adenosine receptors, therefore preventing the those calming neurotransmitter byproducts from permeating the brain and allowing glutamate and dopamine to run wild. Clearly there's some sort of connection there, but is it due to the prevention of adenosine -- which has an inhibitory effect on the central nervous system -- or the increase in availability of glutamate and dopamine which have the opposite effect?

Also, found this article about caffeine's effect on the brain: http://lifehacker.com/5585217/what-caffeine-actually-does-to-your-brain I think it's interesting the part about GABA and glutamate, which are intricately connected and suspected of playing a large role in HPPD by many members of the community here.

Does anybody else have really bad reactions to caffeine? I know many of us here have hypersensitivity to substances, but for me caffeine is a whole different subject. Even very small amounts of caffeine completely destroy me. And I'm not even talking coffee. In the past I've eaten small amounts of dark chocolate, which has caffeine, but I'm at the point where I'm just gonna totally go without chocolate altogether because of how crazy it makes me feel. For example, I had a small piece of dark chocolate two days ago and I still feel the effects. But it's crazy because it's not just as if my symptoms worsen -- they do, but it's more than that. I sorta feel psychotic, a bit out of control, very unstable mentally, and I absolutely obsess over my symptoms all day long and become melodramatically negative about everything in my life, but especially HPPD. I guess I haven't done other drugs since getting HPPD so I don't know how I would react, but man caffeine really does a number on me.

I was also wondering about this recently. I haven't drank it two years since getting HPPD and I don't have plans to start anytime soon, but I was curious if anybody's heard about someone who's healed from HPPD then relapsed after just drinking...

MadDoc is correct about the pathways. I had terrible anxiety off and on for most of my adult life, but ever since I made a concentrated and holistic effort to address it I've basically seen those pathways fall by the wayside. Like HPPD there's no cure for anxiety, but there are many different treatments that work and if you combine them all you can really begin to make a difference. For me, I'd say the most important has been diet. I eat a loosely-based paleo diet, no gluten (increases anxiety), potatoes (increases anxiety), excess sugar (increases anxiety) and junk food (increases anxiety). This has worked wonders for me and on days when I don't eat well I can tell. Eating changes your gut and hence your neurotransmitters so there's really no better way to alter your brain chemistry than through eating. Yoga is also great. It trains your brain and body to handle stress, therefore when stressful situations occur you're more ready to tackle them without worry. Meditation is also 1A behind food. It's worked wonders for me over the last few years. I really think it's transformed my brain after practicing nearly ever day before bed. I think half the battle of anxiety is not understanding what's happening inside your mind, not being able to take a step back and really examine your thought process. Meditation totally changes this and has entirely rewired my brain for as far as I can tell. I literally don't even think the same way I used to after meditating for two years. I'm much more at peace with myself and my thoughts and am finally an expert at watching things from afar, which I never could do before. As far as supplements go, I think a B-complex vitamin, magnesium, passion flower, fish oil, and lavender tea have really helped me out. I also hear taurine is good for anxiety as it promotes GABA. The combination of all these has really helped me transform my brain. I haven't had anxiety in about a year now and I think it's largely due to a combination of all this stuff.

Man, that's crazy. I didn't think an over-the-counter drug could cause full blown HPPD. Sounds like it's a nervous-system stimulant that acts on dopamine and serotonin, which certainly isn't something I imagine is great for our condition. I just can't believe it had such a severely negative effect. You should definitely talk to your doctor and let them know this happened, maybe even get in contact with the manufacturers if possible. There are a lot of stories from people who've relapsed so maybe you can read their posts and see what they said. I imagine if you healed once you can heal again.

My personal opinion is that you're probably better off trying to get healthy the natural way and seeing if you have improvements before going on meds. Though meds are a tremendous help to many in this community I also think a lot of those people would prefer to be off meds if they could. In other words, my belief is meds should be a last resort, not a first. There are all sorts of natural antidepressants out there with less side effects. I've taken turmeric, bacopa and passionflower off and on for the last year with great success in treating my anxiety and depression. Food has helped me the most though. Either way, you might just give yourself a bit more time to see what your progress is like before you make a decision on anything.

Yeah, I'm no doctor but it sure sounds like a bad case of Depersonlization-Derealization with perhaps a little Alice in Wonderland Syndrome mixed in. I've had horrendous macropsia since getting HPPD, so I know how you feel.

I've only had floaters since my hormones got out of whack and since anxiety can screw with your hormones it's not surprising you see them now that you're anxious. I imagine if you can get your anxiety down you might see a reduction in your floaters as well.

Sure, why not. I won't be able to tell much but perhaps others will be able to.

I've tried over a hundred supplements, pharmaceuticals, herbal remedies, you name it -- not to mention a complete and ongoing transformation of my diet and health habits -- and if there's one thing I've become an expert at over the last few years it's monitoring my emotions, my thoughts, my anxiety and asking myself what I took or ate that could be contributing to the way I feel. I've had other health issues that have required this constant inventory too and so I'm essentially at the point where I just watch myself all day long, constantly taking stock of my body chemistry, and if there's one thing I've learned throughout this process it's that everything happens for a reason -- at least in terms of your body chemistry. I'd really encourage you to try and examine what time of day you feel best, worst, when you have anxiety, when you don't, and so on, even writing this all down in a journal if you have to, and then evaluating what you ate, what pills you took, how much you exercised and seeing if there's any correlation with how you feel. I'd be willing to bet you could figure out at least one common bond that's contributing to the way you feel. A perfect example from my life: About a week ago I started buying potatoes because they're high in iodine and I need to be on a high iodine diet for my health. I haven't really bought potatoes in over a year, however, since I started eating a more paleo-centric diet. So one night I cook up a potato for dinner, then about three in the morning I wake up completely wide awake, heart beating, with absolutely no explanation as to why I'm feeling this way. I haven't had bad anxiety in over a year, there's nothing on my mind that could be keeping my awake, I just suddenly popped up and couldn't go back to sleep. In the morning I did what I usually do when something like this happens and analyzed my diet the day before. I knew I didn't have lots of sugar before bed, and I ate mostly everything I usually do -- except for the potatoes. I then do a little research online and come across several articles that talk about how potatoes are high in carbs and one of the worst foods for people with anxiety and adrenal issues. And there I had it! I was so not used to consuming lots of carbs that when I did it took a huge toll on my sleep and gave me anxiety for the first time in over a year! And all just because of the food I ate. All I'm saying is there's reasons behind the way we feel and it's worth it to try and ask why. Maybe HPPD brains are a bit more haywire than others, but I do think in general you can get to the bottom of your emotions and anxiety by really taking a good hard look at everything you're doing, eating and thinking throughout the day.

I was in a similar place as you for a long time. I remember when I first got HPPD it was like being transported into another world because my DP-DR symptoms were so severe. I literally thought I was dreaming this all at one point. Everything looked like a cartoon, people looked like they were sculpted from clay and my visual-spacial recognition system was so completely destroyed I couldn't move my eyes anywhere or track anything across my field of vision without a gigantic and long-lasting smear that persisted for sometimes minutes after I took my eyes away from it. I've made tremendous progress since that time and I attribute most all of it to abstaining from drugs and living a healthy lifestyle, especially with regards to eating habits. I don't know what to tell you other than you're not alone, many people here have suffered from intense HPPD and DP-DR and that 1.5 years is nothing in terms of recovering from HPPD. Also, I've been to so many dark places and thought I'd never make it out alive. I don't know how many times I've contemplated suicide, but I've always pulled through, always somehow found a way out and kept on pushing. After two years I'm so happy I did. Though I still have HPPD it's gotten so much better, especially after transforming my diet, and I'm finally in a place where I'm OK from day to day, which I never could say until now. HPPD is a very long road and a very strenuous fight, but as others have already pointed out life is worth living even if difficult. You just need to give yourself time.

That's great drugs have enabled you to see the world differently but if you don't stop them now you might be that way permanently! Only you can decide what's best for yourself in the longrun but I'd urge you to at least give yourself a break for a while to see if your symptoms persist and to see how much you enjoy it. If you think life is pleasurable with 24-7 visual snow, patterns, headaches, etc., then by all means continue doing drugs. If not, then you might want to steer clear of the drug scene until you're completely healthy, or better yet, forever! You only get one life and one body. You might want to think twice before potentially damaging both forever!

Food. I'm telling you, I tried EVERYTHING. Nothing has worked as well as food has for me. I also haven't done any drugs whatsoever since I got HPPD so I think that's played a big role in helping me recover, but nothing has changed my life for the better more than totally going natural, eating nothing but whole foods and of course getting a bit of exercise in every other day. I made a post recently about my routine. Check it out. Might be helpful.

That's what it sounds like. Do you know why?

Seems like nothing shows up, so I'm not sure I should even get one. I've searched the site for "MRI" and pretty much all anybody's said is that they don't show anything for HPPD. Just curious if it's even worth it and if anybody has had first-hand experience with this.

Just stumbled on this video and thought it was very germane to the conversation here. A little bit of rosemary is good for the brain, but too much can be bad. Just goes to show you're always better starting off slow and never better off overdoing it.

There have been more than a few users who've had their symptoms worsen due to second-hand weed fumes so that's definitely a possibility. It sounds like you could just be hyper sensitive to substances. I'm the same way and have had many small flare ups throughout this process but I always go back to baseline relatively soon. Sleep could definitely be a problem, and overworking your brain. Have you tried any stress-relieving practices? Meditation or massage? You should also closely examine if you've changed anything in your diet over the last few months. In my experience, because I'm so sensitive, even the slightest alterations in what I eat can make a huge difference in my mood and perception. A few nights ago I ate a potato right before bed and woke up at 2 a.m. with extreme anxiety because of carb overload. No matter the case, as long as you really keep an eye on what you're eating, how much you're sleeping and your general level of stress you should be OK.

I don't know that taking more throughout the day is necessarily a good idea. Your brain will then be expecting medication at those points rather than just twice a day or however many times you were taking it before, which creates another mini-addiction problem. I think you're much better off sticking to taking them the same time of day but just decreasing the dosage by a very small amount, perhaps by grinding up your pills, removing a small bit each time and putting the rest of the powder into a drink. Each day you can then remove a little bit more. You're doing it the smart way but whatever you do I'd recommend decreasing dosage as gradual as possible. I went through benzo withdrawal last year and it was probably the worst month of my life and created insomnia for three more months after that. I think as long as you just go really gradual you should be OK.