Hall89

On 2/21/2022 at 7:06 PM, ManwithHope said:

Mind you, I was using marijuana the entire time which I know is not good, but it helped me cope.

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?

On 12/2/2021 at 5:46 PM, ManwithHope said:

Hello everyone, I finally have got my hands on a keppra prescription after spending hours reading about other people’s success with the drug. I struggle with DP/DR, brain fog, and head pressure (forehead). I don’t really have any visuals other then visual snow and floaters. No warping or moving objects. I will keep everyone posted on my progress. 

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.

8 hours ago, cosmiccharlie said:

Please don't tell people to stay away from antidepressants.  They have been a huge help for me and could help someone else.  

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.

On 11/16/2021 at 3:08 PM, NRFAdmin said:

PRF which basically is a carbon copy of the NRF. Amazing how one individual, a patient no less infiltrated our organization, refused to sign an NDA, stole contacts, materials that took over a decade to create. That’s the PRF.

This is how that announcement should read…

https://www.neurogroup.org/2017/01/25/peter-goadsby-needs-our-help/

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!

12 hours ago, Lucca said:

The hppd I experience is vast. My current spike that I’m going through is nothing compared to my DMT & Acid days 11 years ago. Right now I’m experiencing visual snow, halos, tracers, the colors i see look all like a japanses cartoon. I don’t know how to describe it better.. small things can look big and big things can look very small. Judgment and interpretation can be difficult at times. Hard to distinguish what an objects actual size is. It’s hard to signify things sometimes. All static patterns are constantly warping and moving. Like the spots on my carpet look like there is constantly a sea of ants swimming over it. Symmetrical patterns like cub boards and doors vibrate and flash colors. I don’t have the words to describe what it looks like when I look at a light. Nighttime hppd is always worse. Especially when I’m tired after a hard day at my work. 
but all subtle enough for me to ignore it most of the day and get on with life. Where as 10 years ago it was bad. Really bad. I had developed a strong speech impediment. I struggled to hold a conversation with another person in the worst of it. The visuals were so strong and so out of this world that i became alienated from everything. I struggled to look at my own parents because I hated seeing them that way through my eyes. It got to the point where i lost that feeling of connection with them, and everybody else I knew or met. Was some very scary times which at the time i never realized how bad it was and how seriously I was frying my brain by ignoring the hppd and always taking the trip to the next level. There was a time where I believed i was some sort of shaman and i had this gift of the third eye (i still did not know that it was hppd then). But in reality i was just cooking my brain like an egg. It wasn’t until the one day I overdosed on magic mushrooms and had an epileptic fit, tongue locked and foaming from the mouth, did I only then catch a wake up call and get my shit together. Quitting all drugs and venturing onto the road of recovery. I still drink sociably, occasionally, but don’t touch anything else and for years now. I quit cigarettes along with the drugs back then so don’t smoke either or even drink coffee. I’m living a relatively healthy lifestyle. Exercise daily, watch what i eat. I’m a Chef by profession and love my work. I’ve been running my own business since Covid hit and have been surviving successfully with it. Now just had my vaccination and finally about to get back in the kitchen. So I’m happy to admit that things worked out for me in the end and if I could I wouldn’t change a thing from my past or my hppd because it’s what has made me the person I am today. Which I am happy to be.

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.
 

12 hours ago, Lucca said:

So don’t worry about it, your visual snow. If you’ve just smoked weed a couple of times, believe me, the visual snow will heal. For me weed is what always targeted in worsening my visual snow. Where as acid and shrooms were allot more on about colors, tracers, halos, vibrations and creating friction on static objects. Like optical illusions etc.. 

So basically don’t stress. It will take a long time (roughly 5/6 years for me) but you will eventually recover. There will still be times in your day like when you look at the sky or when in a really dark room that you may notice it but ultimately it gets pretty close to a full recovery. At least from my experience it did.
just learn to tolerate it and work on a way to getting used to it. Life becomes much easier once you get ahold of that. And then you’ll one day recognize it getting slowly better. But the less you focus on it’s recovery, the faster your recovery will progress. If that makes any sense? 

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?

 

9 hours ago, Lucca said:

Hi. My visual snow was bad in the beginning. From 13 to about 23 I had visual snow. I must admit that from 13 to 17 I was just making it worse from all the smoking, herb. But from 17 to 23 I did see improvement after I stopped all smoking weed and taking psychedelics. Where it got to the point that I could barely even see it by 24 years of age. 

I found though that once I became more comfortable with the Visual Snow and tried paying less attention to it that it slowly started going away. It takes a really long time so watching it and waiting for it makes it seem like an endless journey. So I’d say just try and work out a coping mechanism and accept it for what it is and just know that one day it will go away. Just don’t do anymore narcotics (even avoiding alcohol would help, but absolutely stay away from psychedelics & herb). 
it took me just under 6 years (clean of all psychedelics & herb) to make a full recovery from the visual snow. And i tell you it gets to a point where it won’t be gone yet but it really won’t bother you either. You eventually stop getting anxious about it and find it doesn’t really effect your coordination & concentration anymore and then eventually you start struggling to see it before one day it just stops showing up. 

ive just had mine come back now after 3 years since my first and only full recovery. As mentioned above I took some adhd/antidepressant medication for 10 days and it totally reversed my recovered state of mind. It’s been just over a month now and the visuals are up and running again. But already I have seen an improvement in them just vs 4 weeks ago. I’m feeling confident that in another 4 more weeks I should be at that point where the visuals don’t bother me anymore and then just a matter of time before they eventually subside completely again (I’m optimistically hoping for) 

I hope this has given you some kind of reassurance or hope. Just remember it takes time and work. You got to try develop ways to live with it. Accept and tolerate it. And then you’ll find everything will start working itself out. 

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?

On 8/9/2021 at 6:57 PM, Lucas said:

For how long did you suffer from brainfog and headpressure before taking lamotrigine ? 

And how long did you take it and what dosage to see this effect ? 

Please answer as I am desperate to find somethign to relieve head pressure I would be willing to give lamotrigine another try...

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?
 

Quote

Ehave, Inc. (OTC Pink: EHVVF) (the “Company”), a provider of digital therapeutics for the psychedelic and mental health sectors, announced plans to launch a series of studies to determine the cause and possible cure for hallucinogen-persisting perception disorder (HPPD). 

https://ehave.com/post/hallucinogen-persisting-perception-disorder-hppd-research-initiated-by-ehave-gcYwlcmD

On 6/27/2021 at 10:18 PM, Lucas said:

These are my worst symptoms too, they've been gradually getting better.

I'm 4 years in and very much still impaired but it's still way better than the first year when it was really extreme.

How long have you had the pressure and fog ? 

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.

On 6/30/2021 at 4:13 PM, Fawkinchit said:

This may not be entirely accurate, I do believe there are rare cases that do not present much for visual disturbances. For myself in fact I didn't develop visual snow for a couple weeks, and eventually the visual snow went away, however other symptoms remained.

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?

22 hours ago, rlopes said:

Hey man. I've seen your posts on Reddit, and that you think visual recovery is impossible. Please note that there are indeed scientific studies that use Visual Scales to measure this, and they show that improvement in this regard is possible. I can make another thread to post this later.

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

11 hours ago, neffbull said:

According to Abraham about half of those with HPPD will fully recover over five years. 

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/"

On 5/12/2021 at 1:36 PM, rlopes said:

Now, 7 months after, I feel like I am getting back on my feet. Lamotrigine has been of a great help, along with all the lifestyle changes that people mention here.

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.