sami

Mornings are the worst for me too, in addition because I've had to deal with rough anxiety in the mornings since I've been a kid, that with HPPD got 10 times worse. Then as the day goes by it usually gets better. Until a few weeks ago I had for the past 5 months been waking up with that bad anxiety because I constantly worried, obsessed about all the symptoms. I changed my diet, stopped with all sugar and most carbs (started with keto and intermittent fasting), I stopped with all meds, started to focus on my health, forced myself even though I did not want to to start doing things I used to have interest for before everything bad started, and slowly it has gotten better (even though my most of my visuals are worse). Before going to sleep, in bed, I listen to audio books, which has been helping me a lot with not focusing on my visuals and falling asleep. Now I sleep better than I've done in a long time, even before HPPD. I wake up with almost no anxiety and that makes it so much easier to deal with negative thoughts and the obsession with the symptoms. I do notice though sometimes when I take cigarette number 4 or 5 during the day that same anxiety comes back. So completely quitting smoking is a must for me. Try to find your triggers. What makes you feel worse. Food, smokes, activities, other things and avoid them. I still have bad days, and I accept that. There will be bad days, but there will also be... better days. Never done any other supplement than CBD oil.

You have to give it time. You have no idea where you are gonna be or how you are gonna feel in one week, or one month, or one year. I've had the exact same thoughts as you are having. How will I be able to do my job, how will I be able to take care of myself. I can only speak for myself but 2 months ago I managed to do 10 hours of work per week - I had severe dr/dp - comparing with half a year ago 40 hours. Now I am back at about 20-25 hours per week. How long will it last? No idea. But it can get better. And who will take care of me? No idea. My parents are elderly too, so I can't expect on them forever. Or my sister who has her own family. I have to push that thought away, because it's really destructive. Regarding dp/dr, I've experienced it long before I ever got HPPD, or even had done any drugs. First time when I was in the mid 20s, because of anxiety and panic attacks. Then it's come on and off for the past 15 yrs. There is an extremely strong correlation between anxiety, panic attacks and dp/dr. When you then add visual disturbances to the mix, it makes it even worse. There is a real possibility that could be the case for you, that it is actually your anxiety and panic attacks that are the driving force behind the dp/dr, not necessarily the HPPD. So you need to relax, try to put your mind other things, try to avoid obsessing about it. I know, it sounds like impossible and I though it was impossible just three weeks ago, but I am actually writing this now, and it can get better. Most people don't seem to have HPPD for life, remember that. But anxiety, different meds, unhealthy lifestyle seem to worsen it. Try to focus on good things for you, and try to not decide now how your entire future is gonna be. Fact is, you don't know. The only medication I would suggest you could try right now, temporarly, is some sort of benzodiazepine to help you get the anxiety in check and just see if that would then help you with the dp/dr. A lot of people also get help with their visuals from benzo.

I use THC free CBD. It helps me relax and my PTSD. I did try some CBD with low amounts of THC (0.2%) a few months ago and it triggered CEVs for me, so it seems I am super sensitive now (and for other substances too, same with Zopiclone). I stopped caffeine completely a few months ago and it has made more stable. Nicotine seems to affect my visual in a bad way, so I am trying to get off the tobacco. 2-3 cigarettes a day is okay, but as soon as I smoke more I get issues with my eyes, difficulty focusing and slightly more disturbances. It's great you have your family and that they know what you are going through. I have the same support from my sister. Food is a great distraction. I try to cook a lot because it affects other senses, smell, taste and that makes me think less on the visuals. I do low carb/keto, and it makes me feel better about myself and is supposedly good out of a neurological perspective.

I would recommend you to get off all drugs, all meds, be healthy and stay like that for a few months - find your baseline - before starting to experiment with medications. For a lot of people the dp/dr seems to get better after a while. Mine is a lot better now than a few months ago. My synptoms started when I was prescribed Lamictal last year. But I don't know if it was the trigger, or it was a combination of things (quitting Effexor same time after 4 yrs, starting (again) with Zopiclone, smoking a lot of weed past 7 yrs, bad anxiety + PTSD all my life, deep depression at that time, and loads of different drugs back in 2016). Olanzapine is like Lamictal used for bipolar disorder but is also an anti-psychotic (so maybe heavier therefore). Lamictal is used to treat VSS and HPPD. Some react well on it, other don't. Everyone is different, so it's difficult to say how you may react. I avoid everything at the moment. Best advice I've got from this website is to just try to keep myself occupied with other things, no matter how difficult it is. Me focusing in my symptoms is what's been ruining my life, not the symptoms itself, even though they do make a lot of things in life more difficult. Hang in there - it can get worse before it gets better (but if it's meds/drugs making it worse, then I would avoid it. IMHO it's a bad sign). Some of my symptoms are getting progressively worse but I am hoping it will turn around sooner or later. Until then I will do my best to not let it drag me down. So: 1. Yes. 2. Impossible to say. 3. I haven't seen anyone with HPPD say something made them first worse and then better. DM me if you need to talk. I check in here regularly.

Didn't mean to sound negative with my first comment. Everything is worth trying - I mean, I try some weird stuff too so, not better than anyone else! Have to just be careful so it doesn't get worse. Always a risk associated when it comes to using psychedelics to treat HPPD - there are a few people who say their HPPD has become better thanks to psychedelics, I wouldn't dare to risk it.

Homeopathy is unscientific. There is no science that backs it up in any way.

Alcohol is the only thing that doesn't seem to make my symptoms worse. Everything else does, even caffeine, nicotine, etc. Maybe it has to do with how alcohol affects the glutamate and GABA receptors. Still, I avoid drinking, anything to not mess my brain up more than it already is, but sometimes I feel the need to take a break from life and empty a bottle of red wine anyway.

My issues started when I stopped with Effexor last year quite quickly and started with Lamictal (for bipolar disorder). My issues got worse when I stopped Zopiclone cold turkey this winter. Done a bunch of drugs a few years ago and smoked weed for several years but never experienced any issues from them. Issues started when I changed medications. But then again, psychedelics can trigger things years after they've been tried. So personally I have no idea what actually triggered my symptoms but I have a feeling it has a lot to do with all the pharmaceuticals I've been eating for years in combination with psychedelics and weed.

I think anything that sharpens the eyes helps. When I wear reading glasses my ghosting/diplopia becomes less noticeable. I do have slight astigmatism that has never been an issue until I started having issues with HPPD. It's like the brain can't correct something anymore that it used to correct before. These glasses can be ordered with a prescription, which is something I am thinking of doing.

This is the Youtube video I found on it. Might as well try and just see what happens. I am also seeing a specialist in London in a few weeks that will check my jaw for TMJD issues. Read about several people that have had visual snow, lack of 3d perception, palinopsia, etc. because of TMJD. Seems like all of this is somehow interconnected, HPPD, VSS, anxiety, stress, etc.

I've worked as a web developer/programmer for the past 20 yrs, and a couple of months ago my light sensitivity went up the roof, about the same time as my other symptoms exploded (vs, palinopsia, floaters, ghosting, CEVs, etc.), which lead to me having major difficulties sitting in front of computer screens and TVs because of the bright light. I found out about a company that makes special pink tinted glasses for migraine patients on Twitter - someone who had visual snow had benefited from them - so I thought why not just try. So I ordered them and got them about 5 weeks ago. I put them on and suddenly I was able to focus on my work, watch TV and play games without feeling like getting a migraine every time - things I used to do before this brain mess started. It helps a lot, not just with the light sensitivity but the palinopsia seems calmer - seem to get less positive after images. Even my ghosting doesn't disturb me as much. Generally my eyes feel less strained and even though it doesn't do much to stop the progressively worsening of my symptoms, they do help. Check them out here: https://www.theraspecs.com/ Quite expensive, especially if you live outside the US but totally worth it.

I've seen many recommend it in these forums and other places, like Reddit. Though there are also examples of people getting worse symptoms from clonazepam.

I've had a acupuncturer for several years, long before I developed any symptoms. Now that my symptoms have gone from bad to worse past months I've had a couple of interesting experiences with physical stimulation and my visual disturbances. Beginning of Mars I had pretty bad photophobia. During a treatment at my acupuncturer my eyes started flashing. I don't normally have this flashing but the treatment triggered it. He also noticed my third vertebrae was slightly out of place and recommended me to go see a chiropractor. So week after I saw one that gave me a treatment on the vertebrae. Later the same day my photophobia improved by 50 %. In comparison, the day before I was unable to do work in front of my laptop in the evening, the next day I was able to. After a few more treatments my photophobia has improved with 90 %. It could though also be correlated with me stopping with my pharmaceuticals about the same time but the change was so noticeable and closely correlated with the treatment. During my third chiropractor treatment I also saw glowing worms in my eye sight. Not something I've seen otherwise either. The treatments haven't helped me with any other symptoms (VS, palinopsia, floaters, tinnitus) this far but I still find it worth trying, because of the correlation. (I have a layman's theory on this, neck issues, TMJD, VS, CEVs that I'll post about in the forum in a day or two.)

Thanks for sharing.

You have nothing to lose. Maybe contacting a doctor once you feel ready for it.

I don't want to make you more worried but I think it is important to always talk all plausible possibilities of certain symptoms so people with HPPD can get proper treatment. When I saw your pictures and also some of the things you said you experience actually made me think of schizophrenia. But there are also a lot of other symptoms related to schizophrenia so it really does not have to have anything to do with it but who knows what psychedelics might sometimes trigger. Maybe there could be something there for you to further investigate, and maybe even find something that could help you out with the violent imagery. Or maybe not. I am just a layman so take my feedback as it is.

And the guy showed up at the same time?

Panic attacks/anxiety can in return create dp/dr. I have a long history of it already before hppd.

What drugs triggered this? How did it start?

This seems to have been the case for me. Used a lot of Zopiclone last year, almost every night to be able to sleep because of bad stress and anxiety. It calmed me down and made it possible to sleep. My visual symptoms slowly got worse and towards end of last year I started getting CEVs in the mornings and decided go cold turkey. Until then I only had slowly progressing visual snow during night time, diplopia, pattern glare, and some tinnitus. Now it just exploded. Suddenly I got visual snow day time, constant diplopia, palinopsia - both positive and negative, floaters, photophobia, bad tinnitus, etc. A couple of months later my photohobia improved 95%, palinopsia improved - almost no positive after images, and the CEVs were gone. Some things definitely got better after being off Zopiclone completely, but the palinopsia has once again been getting worse and the CEVs have come back, even though it's more rare. Find your baseline. Get off everything, even caffeine and nicotine.

I always feel worse in the morning with my symptoms. If they actually are worse or that I am more aware of them is hard for me to say, but objectively I tend to think I have more static, after images in the morning, that then tend to get better later during the day. But, if I don't sleep enough it becomes worse the longer the day goes.

Since no one else has responded I'll give you my two cents. I am really a beginner in this myself but have read a lot so you'll just have to take it for what it is. I know one of the more frustrating things is the need to communicate with others that are going through this and not being able to, so that's why I am replying. My Visual Snow Syndrome/HPPD started about 14 months ago, with some minor visual distorsions. Hadn't done any other drugs but cannabis - been a heavy smoker for the past 4-5 years - for about a 6 months before that. Also been on different anti-depressants, benzos, sleeping pills. About 1.5 yrs before my symptoms started I had done loads of psychedelics, ketamine, speed, MDMA, etc. So it's impossible for me to say what has triggered my symptoms, since I've done so many different things, but the question was if meth and cannabis could trigger HPPD? I would say definitely. You might get VSS/HPPD. Cannabis use seems to be very common among those that have VSS, even though it supposedly is not a key indicator, while some research says it is. For me I just think it is a mix of a lot of different things. A lot of bad stress, bad mental health, drugs, pharmaceuticals, etc. 1. Staying of drugs and really any substances, like meds, nicotine, caffeine seems to heal some people up. 2. I drive. Have to be careful during low light conditions though. 3. Impossible to say. Stay clean, stay healthy, focus on activities, that's what helps me. Got a bit of OCD so keeping my mind off this is really hard, so I am thinking that the best thing for me is to try help others in a similar situation as me. Another good recommendation is to try to find your baseline. It motivates you to live healthy.

@Jay1 @you_are_worthy MDMA (and cannabis) defintely helped me overcome a lot of my issues with PTSD that I've had for 25 yrs but that the consequence has been VS/HPPD has impacted my life now even more negatively. There is a lot of potential in these drugs to treat different kind of mental health issues but obviously for some of us there are some major risks associated with it.

I used to eat Zopiclone and it makes my symptoms worse. Zolpidem is quite similar to Zopiclone.

I am a skilled web developer, 20+ yrs experience. I also run my own company, I am partner in another one and have some board experience. I've also worked a bit with harm reduction a few years ago, and was about to start an organization for that, but yeah... then life screwed me. I might be interested in helping out.