Hall89

This is probably what gave you the rest of the symptoms since THC alone is a cause for HPPD, so in other words, you were throwing wood on the fire. But yeah, Lamotrigine takes away the dpdr, head pressure and brainfog.

The title pretty much says it all. I've had some real bad insomnia the past months and that combined with the HPPD is a next level of hell to be in, so i'm thinking about trying alimemazine since i've heard and read that it's good for insomnia, but before i dare to try it i want to hear of other HPPD sufferers experience with it. Did it make it make the visual snow worse?

I'm certain that the head pressure and brain fog, maybe even the DP/DR is the result of an excessive amount of glutamate, wich seems to be a part of the etiology. This is neurotoxic and can cause the two first mentioned symptoms. These subsided for me just a couple of weeks after going on Lamotrigine, wich gives strength to this theory since one of it's properties is to stabilize the levels of glutamate. So i would have given that a try insted if i were you.

Since they in rare cases can cause HPPD by themselves i feel that i have to warn about it. Many with HPPD that goes on them have their symptoms worsen as well, wich isn't wierd since they, like psychedelics and THC, have hallucinogetic properties and act on the 5HT2a receptors.

The last thing you should do is to take any drug with hallucinogetic properties. That clinic is a bunch of voodoo doctors that will mess you up even more. If you want any hope of this getting better stay away from cannabis, psychedelics, antidepresants and other psychoactive drugs. But to answer your question, yes, with abstinence many gets better and from what i've read it's usually the visual hallucinations that subside for some, same with the anxiety and dpdr. What seems to be permanent though is the typical VSS symptoms, i.e. the static, halos, starbursts, light sensitivity, ghosting etc, probably because we've fried our brains ability to filter out unnecessary visual stimuli.

Yes, you got a mild form of HPPD. Stay away from cannabis, psychedelics, antidepressants and other serotonin attacking drugs if you don't want to risk it getting much worse.

I have a hard time believing this since it was the Visual snow initiative that told me about the PRF when i asked them if there was any research going on about HPPD 6-7 months ago. Then they told me about the PRF and that they were working hard to get on their fett and do what they do and that their site would go live in the end of the year.

This sure is good news, thank you so much for starting this! I hope that everyone here that reads this is taking 10-15 minutes to do that questionnaire!

Jesus christ, if that's "mild" compared to your "old" HPPD you're one of the strongest persons that i've talked to. That you've managed to get an education with such severe HPPD is beyond me, i almost killed myself and mine is much milder than yours. I presume that you got depersonalization and derealization on top of all your visuals? Did you get the head pressure and tinnitus as well? And would you really not have changed a thing if you could go back with the knowledge and experiences that you have today? Surely you would? I mean, who doesn't want to have a clear vision and good mental health? Personally i would gladly have sacrificed a leg and my ability to speak to go back in time and prevent this from happening. I really hope that you're right, but i'm preparing for the worst; that it wont. So did really all of your symptoms go away? It must have been such a relief for you if so! I quess that it happened gradually or did some just vanish over night?

Thanks for answering, it appreciate it alot, because having the visual snow actually going away and not just getting used to it seems VERY rare, and it is without a doubt my worst symptom today, so you gave me some hope! What were all your other symptoms that went? Oh trust me, i'm never touching any drugs again, but my case is a bit ironic, because i got this hell of a disorder after the fourth time that i tried cannabis, prior to that i had never tried anything else than alcohol 4-6 times a year, caffeine daily, opioids for a week after a surgery a few years back and zopiclone a dozen of times last year against insomnia. Or well, i have been on an SSRI for 13 years, wich i'm certain drastically increased the risk of getting this since they act on the same receptors. Many of those that i've talked to with HPPD have actually been on antidepressants, so i hope that both HPPD and this severe interaction becomes more known in the future so that people know the severe consequences that these drugs and meds can have. I hope that you make a full recovery again mate!

Thank you for sharing! I'm real sorry to hear about your struggles and that it has flaired up for you. I can't even imagine how horrible it must've been to get this disgusting disorder at such a young age. I'm curious, did your visual snow actually go away with the years or did you just get used to it?

I've read that Henry Abraham said that about half of the people with HPPD will fully recover within five years, and i'm curious, do you believe this is accurate? Personally i don't, but i do know that some of the symptoms fade for some people, were the hallucinations seems to be the most common,but i've never heard of a full recovery and sadly the static seems to be permanent for most, if not all. What makes me question this statement is the interview with him below were he says: "for some, not a ton, but some, the symptoms can fade over a long period of time". That doesn't sound like any 50% to me. Or maybe the full recovery he's talking about is just mentally and not symptoms actually going away?

It started to fade when i got up to 50 mg after one month and i'm still on it, but 125 mg. It's taken away the head pressure, brainfog, hallucinations and a big part of my derealization, but sadly it hasn't done anything about the rest, like visual snow, light sensitivity, astigmatism like vision etc. I can't say for certain that it was the Lamotrigine, maybe they would've subsided without it, but i doubt it since a part of the pathofysiology is that the dysfunction or destruction of GABA interneurons causes an excessive amount of glutamate, which i believe is the cause for the head pressure and brainfog, and Lamotrigine stabilizes the levels of this.

I really hope that this happens and that they atleast can find out the etilogy and update the very outdated and wrong DMS-V criteria that prevents people from getting the diagnosis today. With it being wrong i'm talking about the first critera which says: "A. Reexperiencing one or more of the perceptual symptoms that were experienced while intoxicated with hallucinogens." This couldn't be more wrong since most people i've talked to have gotten visual disturbances that they haven't seen when being under the influence of the drug, this was also shown in a survey with 19 HPPD patients were they all reported symptoms that didn’t match their drug experience. Personally i had no visuals when i tried the weed that caused mine, but still i got most of them. Another thing that's missing in the criteria is some of the most common symptoms, like visual snow, palinopsia, photophobia, well, pretty much all the symptoms that comes with visual snow syndrome. Does anyone here know how it can be so inaccruate? Is it because it was made when HPPD was just discovered and only linked to LSD?

The head pressure and brainfog is completely gone, most likely thanks to Lamotrigine. My worst symptom today is the disgusting visual snow and derealization that varies in intensity day to day. God i hate this shit.

41-42 years with this shit? I feel for you man, atleast i got 31 years with a clear vision and no derealization.

Yeah, the spectrum of severity seems to be big, but visual disturbances is a must for it to be classified as HPPD, or well, HPP, since it's so mild for some that it doesn't cause them any suffering. I've read about some that only got some intensified colors and mild tracers, others only visual snow and then there's those like me and others here that got it real bad. I'm glad to hear that your VS went away, it's my worst symptom today. Wich remained?

Hard to say, but if i were you i would stay away from drugs for the rest of your life.

As the title says, have anyone here tried Brivaracetam - the newer version of Keppra? I talked with a guy that have VSS and he said that it decreased his VS quite alot; around 50%.

Have anyone here except Onemorestep tried this?

Studies actually proving that HPPD visuals, like vs, can go away? If so, pleasr share.

I wonder how accurate this is and what he means with recovery. Is it symptoms actually going away or people recovering mentally? I hate him for not being more specific.

It seems like all hallucinogens and psychedelics can cause it. "A vast list of psychoactive substances has been identified and linked with the development of this condition, including Magic Mushrooms (psilocybin) [21] and muscimol (Amanita muscaria (L.) Lam.) [22]; San Pedro cactus and Peyote (mescaline) [16,23]; ketamine [24]; dextromethorphan [25]; MDMA and MDA [26]; and cannabis and synthetic cannabinoids [27,28,29,30,31,32,33]. This condition has also been associated with the consumption of Ayahuasca, Datura stramonium L., Salvia divinorum Epling & Játiva, and Tabernanthe iboga (L.) Nutt., which contains ibogaine [17,18]. It is, therefore, clear that HPPD is not strictly associated with psychedelic consumption, but a number of hallucinogen-inducing substances may be correlated with its arising. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5870365/"

In what way have Lamotrigine helped you? What dose are you on and when did you notice the improvements?

I just recently talked to a guy that got HPPD with a loads of visual hallucinations, visual snow, dpdr etc about 10 years ago. He thought that he had destroyed his brain permanently, so he said "fuck it" and started using benzos and alcohol at a daily basis. Anyways, after a few years all his visual hallucinations went away and today his visual snow has decreased alot, he said that his HPPD is 95% gone. He did stop with the benzos and alcohol about 4 years ago and these improvements remained, his dpdr is still there though. The benzo withdrawals were so bad that he had to put himself in though.