sami

Mine started 3-4 years ago. Today what bothers me most is visual snow and tinnitus. I have some ghosting, floaters and diplopia still but they are worse or better from day to day. Stress always makes things worse. I used to have the full list of HPPD symptoms plus some, but most of them are gone, like afterimages/palinopsia, BFEP, hardly ever happens anymore. I've come to acceptance of my situation, found philosophy/Stocisim in my life which has given me a lot of peace. I don't anymore expect to be fully rid of my symptoms and that's okay. It's what fate has given me and nothing can change that. My depression and anxiety is at all time low, and I don't have dp/dr anymore, or at least nothing I take notice of. I was healing even more about 2 years ago, tinnitus was almost gone, visual snow was 50% reduced, but then I got exposed to black mold for two months in a new home I had moved to, and then it all came back worse, so I'm still convinced that HPPD has a lot to do with our immune system, and that there is a casuality with mold/infections (Lyme, etc)/heavy metals and suppressed immune system, so I make sure to take care of myself by living healthy. I do carnivore diet, eat different herbs and supplements, and think I'm on a pretty good path in life. Another case of that it has something to do with the immune system is that when I got Covid (Delta) last year, my tinnitus got worse after that and I had to increase my medication. Zopiclone helps me considerably with my tinnitus, and Clonazepam helps me with both visual symptoms and tinnitus. This summer I'm gonna do a taper for a while, to prevent dependency. Zopiclone I have already tapered from 7.5mg daily to 1mg (I was down to 0.5mg before Covid), and it seems to keep it in check. I've had a deteriorating form of HPPD/VSS since it started, and then only thing has kept on getting worse is tinnitus and visual snow. Visual snow seems to have stopped getting worse, or at least I don't notice it getting worse anymore. Tinnitus is really the condition that is most difficult to deal with, and it gets worse every fall, when there's a lot of mycotoxins in the air. I know you didn't want to hear about acceptance but it has been the biggest part of my way to a better life, and today I would say even a good life.

I've noticed there are substantial differences on the improvement of the visuals even when it comes to minor changes of dose. 0.75mg makes me less tired, easier to get some work done but definitely not as effective when it comes to improving visuals. 1mg gives more relief. Today I took abt 0.8mg in the morning, and 1mg now in the evening and wow, major improvement. I have to try 2mg some day - when I don't have anything important to do - to see what happens, just because I am curious.

Migraine?

Forgot to mention that CZ also reduces my pattern glare/motion substantially.

Sometimes I notice a minimal reduction of visual snow, like 10% less. I just startes Clonazepam though and that changed everything. 50% reduction, don't see it day time at all. Also no after-images. So I am gonna taper off from Zopiclone now. Already started. Still doing it carefully. I noticed an increase of symptoms today in the morning because of it (and it was a minimal dosage change, from 6.5mg to 6mg), but Clonazepam solved that. Gonna stay on 6mg for a week, then go to 5.5mg. I did cold turkey 10 months ago and that's when my HPPD exploded. It was terrible. So, Zopiclone is fine, but id you have been on it for a while and become dependent - I have - you need to kick it extremely slow. It might still increase some symptoms, but they seem to calm down after a while. I was completely off Zopiclone for 5 months last spring, and my HPPD was terrible in the beginning, especially light sensitivity and dp/dr.

Thanks Jay. I've lowered my dose to 0.25mg in the evening and 0.75mg in the morning now. Seems to work fine. I still get a lot of relief from the visuals, but it doesn't help much with my anxiety, but enough so I don't freak out about the tinnitus all the time. I think that's because I've been on benzos on and off for the past 20 yrs in, and my tolerance is just sky high in regards to anxiety. (I am also kicking Mirtazapine and that causes some insane levels of anxiety, so once I've done that it might get better.) I find it interesting it still helps with my visuals. Still experimenting with the dosage, trying to find the perfect fit. It makes me quite tired, and 0.75mg in the morning instead of 1mg seemed to benefit a lot in that regard. I've heard several people mention that taking the full dose in the morning is beneficial, currently though I don't think I can do it because of the fatigue. Maybe that will improve. The less I need the better it is. I am just so amazed how the visual snow is reduced this much. It's like I am getting my life back.

I use Zopiclone, and have used for a while. Just be careful if you taper off. It can make it worse. Do it very slow.

Just wanted to share that I've had a very rough time past few weeks. Since I have deteriorating HPPD that started 1.5 yrs I was coming to a point now that I had started to lose all hope, and suicidal thoughts started to plague me, especially because of the increase my tinnitus past month, which made life unbearable. So yesterday I gave up, visited my psychiatric MD, and said I am ready to give up. Clonazepam has been the last thing on my list to try since I have had issues with a benzodiazepine addiction a few years ago, but I asked for it. We spoke about setting up a schedule. During weekdays, when I work, I take a dose in the morning and one in the evening. Started with 0.5mg yesterday evening and felt nothing. I took another 0.5mg before bed. Nothing. Took 1mg today in the morning and a few hours later, major change. 50% reduction of VS and pattern glare/motion. Unless I really focus I can't see it at all when there are lights or during day light. Afterimages seem completely gone. Palinopsia is a lot better too. Slight improvment on ghosting. No change with tinnitus, floaters. I took another 1mg now in the evening, and that turned out to be too much. Now I am dizzy and tired. Feel a bit drunk. My plan is to have it on a schedule. Four weekdays when I work, then be off them for the weekends. Then have a full week off every now and then. I hope it to be a temporary solution. Trying some other meds too. Tried Diamox. No change. Keppra is on the list but gonna try something called Topimax first. It's my neurologist who decides. How does the schedule sound? What kind of schedules do you do to deal with addiction and tolerance increase?

No risperidone. I've also been on Mirtazapine (4 yrs) and Zopiclone (6 months). Quit everything back in Jan-Feb after my symptoms turned to worse. Withdrawal from bith meds definitely exaggerated symptoms for a while, and I was off them completely for 5 months. Some symptoms improved after a while, like I mentioned (light sensitivity, dp/dr, also palinopsia got slightly better, was having constant positive afterimages but it was reduced by 50%) but the others have kept on deteriorating (visual snow, tinnitus, halos, starbursts, bfep, pattern glare). I got sleeping issues again after five months (in July) and have since then been back on Zopiclone, lower dose though, and my psychiatrist convinced I should get back on a low dose of Mirtazapine too, and I hate myself that I've done that, because it feels like symptoms have progressed faster since then. But it could just be correlation. Not sure of anything anymore. Now I am trying to get off Mz again, and it may be the cause of some symptoms getting a lot worse past two weeks. I started tapering off 17 days ago, when my tinnitus had already gotten worse. Now it's a lot worse plus the hyperacusis, and today I also started to notice increased palinopsia and diplopia, which hasn't happened since January. Personally I suspect there are a lot of reasons for my deteriorating condition. It's not only drugs, since I've been off them before I even got visual snow. I suspect it is a combination of drugs, pharmaceuticals and infection, and the neuro borreliosis back in 2008 has been the main kicker.

I was put on 200mg Lamotrigine beginning of 2018, when I was diagnosed with bipolar disorder. It was shortly after that that I saw visual snow for the first time. I even brought this up with the prescribing doctor. At this point I had no idea even what visual snow was. Visual snow got worse during the year, end of 2018 I also had tinnitus and diplopia. Jan 2019 I started to see the visual snow in day time, and I also got palinopsia, light sensitivity, floaters, starbursts, halos, etc. I quit the treatment with Lamitrogine in February. No change. Instead most of my symptoms (except light sensitivity and dp/dr) have been progressing and getting worse since then, and this far nothing I've done has changed that. Quitting all drugs and pharmaceuticals, caffeine, nicotine has had zero effect. Ketogenic diet during six months and intermittent fasting during five months has had zero effect. Living healthy, excercise, meditation has made no change in the progression of the symptoms. I am ready to try keppra and clonazepam on top of the infection approach, since I am far from convinced infection is the cause, but I got to try something, because as it is... I am slowly deteriorating.

I use Ashwagandha since a few weeks back. Really helps me with both falling asleep and deep sleep, but will probably have to agree with the above statement, slight increase in withdrawal symptoms (I am tapering off Zopiclone currently). Haven't noticed any change in other HPPD symptoms.

Keep us updated!

My dad has tinnitus. My mom has anxiety and depression. They've never done drugs. My sister gets visual snow when rubbing her eyes (but I guess that's not completely unnormal after psychedelics use).

And a lot of people that seem to get better from HPPD are those that live a healthier life. They stop with drugs, alcohol, nicotine, they eat healthier, they excercise, meditate, etc. What could be going on is that the immune system actually gets a boost, and symptoms start to dissipate.

If HPPD is caused by a virus antibotics won't of course help directly, but the virus may be active, or even more aggressive, because the immune system is suppressed. So by helping the immune system heal and fight bacterial infection, it might also get more resources to fight a virus infection. The Epstein Barr virus, a herpes virus most people have becomes latent after initial infection, can become active when the immune system is suppressed. Same could be for other viruses (and bacteria). LSD may act in an immune suppressive fashion. This post on reddit mentions a paper from 1994 bringing this up (haven't found the paper myself): https://www.reddit.com/r/LSD/comments/63mcno/lsds_effects_on_the_immune_system/ Other anecdotals: https://www.reddit.com/r/LSD/comments/bxdi6c/help_guys/ https://www.reddit.com/r/microdosing/comments/572x1t/negative_effects_of_lsd_on_the_immune_system/ So it's possible a latent virus become active which affects the same parts in the brain that hallucinogenics do. It might be even so that because LSD acts as immune suppresant in those specific parts in the brain where it also causes hallucinations, a virus becomes active in those parts. And that might be the reason some get HPPD after drug use and others don't - it's basically related to the state of our immune system. There is loads of evidence that lyme, mold, mercury, etc. can cause symptoms similar to HPPD/VSS.

This has been mentioned before but it seems like as soon as it is mentioned there is a backlash from several people in the HPPD community, like it is totally absurd to even bring up a possible connection. If we really want to find a "cure" for HPPD, we really need to dig into everything, even if it is unprobable, to make sure we haven't missed something.

I've read about several cases - anecdotal of course - where both mother and child have VSS. It could indicate a casuality to some sort of infection, that's been transferred at birth.

I am interested.

I am one of those nut cases that also suspect infection is the probable cause of HPPD, not maybe for everyone but for many. I had a positive ELISA spinal fluid test for Borreliosis burgdorfi back in 2008 and was diagnosed with neuro borreliosis. Back then I had a bunch of neurological disorders, like Bell's palsy, burning skin, etc. I was treated with two weeks of antibiotics and thought I was fine. Before the lyme infection I had never had tinnitus but started to develop it after the infection. It's has come in waves through the years, often in connection with some medication but also when not. (I've also since then got joint and nerve pain, increased mental disorders, been diagnosed with bipolar disorder, chronic fatigue syndrome, IBS, etc.) 2016 I did a lot of psychedelics. End of 2016 I started to notice some slight pattern glare/motion when I stared at certain surfaces with some pattern. Beginning 2018 I noticed visual snow for the first time. Very slight, only noticeable in the dark. It kept on slowly progressing until I got full blown HPPD January 2019. All the symptoms on the list, plus some more (like textual bombardment, hyperacutis, temporary dyslexia, etc.). Now today it's worse than ever. Tinnitus and hyperacutis is what's affecting me most, with a 50 % increase past three weeks. It's caused me to become suicidal. I did not get HPPD suddenly. It's been basically creeping up on me, and is slowly deteriorating. I have tests from this summer from a hospital in Germany that says I am positive for a persistant form of borreliosis plus a number of coinfections, a few which affects the CNS. This has made me question if I really have HPPD. Maybe I would have got visual snow syndrome even if I hadn't used drugs. Maybe the drugs acted as a trigger or enabled it. I don't know. I've done some herbal treatments this summer and I have responded positively to the treatment in some areas, like my joint/nerve pain has decreased by 90 %, my psoriasis is almost gone, light sensitivity is gone, dp/dr completely gone. Most neurological disorders have though remained unaffected, while visual snow, including tinnitus and hyperacusis has kept on getting worse. Next up is treating the persistent borreliosis and coinfections with antibiotics. I really hope it helps because otherwise I don't know how long I will be able to go on, not with the constant increase of symptoms, and especially with tinnitus reaching a level that makes life unbearable.

I got floaters same time I got palinopsia, photophobia, halos, starbursts and dp/dr, and same time vs, ghosting and tinnitus got worse. Never had floaters before that. This is my theory on why: https://www.reddit.com/r/visualsnow/comments/cqwkw2/why_do_you_get_floaters_with_vs/ex09m8h

There are a few of us active on discord. Join us if you want do chat: https://discord.gg/j7v2VKy

Sleep is good.

First: You have not ruined your life. The advice is the same as for everyone else: abstain from all drugs. Even avoid caffeine. Anxiety makes it worse. Thinking about it all the time makes it worse. Try to occupy yourself with things. Hobbies are great. I did around 650 ug my (2nd) last time, and then did a small amount, around 70 ug 8 months later. Haven't done anything since then, even stopped weed which I had smoked almost daily for 6 yrs. Started developing visual snow 6 months later, and then got the rest (palinopsia, floaters, dp/dr, tinnitus, etc.) a year after that. First there is a lot of anxiety because of it, and that definitely makes the dp/dr worse. It has now improved with 95 %. I also got a bad depression after the big trip, and it's also a lot better now. Visuals are still bad, but I definitely don't think as much about them anymore, and life goes on. Things will get better, especially with your attitude, which feels quite positive in the way your write. Most important thing is to keep your anxiety in check, and not let the different symptoms make it worse. You'll be alright.

@Jay1 How do I become a backer?

Can't get it. I have Zopiclone on an old prescription.