Hall89

The frustration and suffering is mutual mate. The reason there's barely been any research done about HPPD is because it's a disorder that's caused by illicit drugs and because most people that get it don't seek medical care because of the stigma around drugs and because they through internet quickly finds out that there is no cure or good treatment, and most of those that do seek care gets misdiagnosed because of the lack of knowledge within the medical community. Because of these reasons i believe that this disorder in varying degrees is way more common than what we know, same with visual snow syndrome.

Instead of killing yourself, start dedicating a big part of your life to spread awarness about this awful disorder, contact medias, write on forums and facebook groups, heck, even hold lectures if you're up for it! I really think it's our responsibility to do this and if all those with HPPD would the way to a potential cure or treatment sure would go faster.

Sure wish that i lived in Australia so that i could help out. If i were you i would have joined the visual snow group on facebook and ask, because there's several HPPD sufferers from Australia in it.

13 hours ago, SomebodySomewhere said:

I used to have trails, geometric patterns in wood-grain/various surfaces, vision that looked very "fluid", micropsia, visual snow (this hasn't gone away, but it's never bothered me), and a visual that I think is DP/DR related and not related to HPPD, where people under flourscenet light looked demonic/dead-looking (could also be a PTSD response, the trip that gave me HPPD was a really bad trip where dying was a big theme).

I can't give a precise amount of time that my HPPD has been gone because I started taking Klonopin within a year of getting the disorder, which masks the symptoms. I do not believe the Klonopin cured me, I think it just went away on it's own.

I'm glad to hear that atleast they're gone! Were your trails and micropsia bad? I wish i felt the same regarding the snow, it's my worst visual, absolutely hate it.
 

13 hours ago, SomebodySomewhere said:

I met another person once and by chance he mentioned he used to have HPPD as well, he didn't take anything for it, and after 10 years it went away on it's own.

Damn! That's a long time! But atleast it's hope. I've been like 90% convinced the last couple of weeks that it's permanent and that those that say otherwise just have learned to cope with it, because pretty much everyone i've asked that's claimed that they've healed say that the key is to stop thinking about it. But that's not really a physical healing that's taken place, only ignoring the symptoms.

10 hours ago, NRFAdmin said:

@Hall89 Yes, that is the link to the study. Details have not been released as it is still pending approval from the IRB. How did you find that link?

Ah, so it hasn't begun yet? Someone on reddit said that Macquarie University was doing a study on HPPD, so i just Googled it.

On 12/18/2020 at 3:20 PM, SomebodySomewhere said:

I'm also not going to go back on them if I do still have HPPD. 

You don't have any HPPD symptoms any longer? What did they use to be?

37 minutes ago, Jacob Lesley said:

@Hall89 I live in the Netherlands and you? To be honest I really think you will recover because you used Weed, just takes some time with this disorder! I will recover too but I think you have a greater chance because of the weed! 

Ah ok! Sweden here. I don't know, it seems to be able to cause it just as bad as other psychedelics. I've talked to several others that got it from weed alone and they still have their visuas 6+ years later.

25 minutes ago, Jacob Lesley said:

@Hall89 @cosmiccharlie sorry to hear this brother!! I get all your frustration and I know this is hell but we need to get through it!!! Can I maybe have your number so we can stay in touch of each other because we will get better believe me maybe not this year or next year but eventually we will! Maybe we can also keep contact about doctor appointments and other things thats helped. Keep up the fight, Believe me with all of the symptoms we have we are real warriors don’t forget it!! You are extremely strong because you are fighting everyday most people can’t even imagine the pain we go through.. but believe me we will get better I mean 95% - 100% it is my only goal and I know we will succeed! For ourselves and the people we love! Just believe and I am going to get all medical help I can so if I have a breakthrough I will let you know!

keep up the fight brother! You are strong and we will get through this just like me!

in a few years we will say this was all a big nightmare and just get our normal lifes back!

 

 

Thanks mate! I really hope you're right! In what country do you live mate? 

21 minutes ago, Jacob Lesley said:

@Hall89how long do you have the symptoms and from what did you get it? How many times you used?

I'm only 9 weeks in, but i was struggling with alot of other debilitating things before this, and with the HPPD on top of them it's just become too much.

Here's the ironic thing in my case, i got it after trying a small amount of cannabis for the first time in many years just in hope off getting some relief from the problems i mentioned above. Last time i did it was about 6 years ago and in total i've done it about five times in my life. Other than that i haven't tried any other drugs than alcohol, caffeine and some anti-anxiety meds. So all in all i've lived a very sober and healthy life.

-------------

What visuals did you have that actually decreased or vanished back in the day? Did you have VS? Hope you recover again! And yes, it doesn't require much THC to cause this, i got it from such a small amount that it didn't even make me high, just a little bit relaxed.

Might it be this study?

https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo

18 hours ago, Fawkinchit said:

Never will I understand why so many people want to do hallucinogens after getting HPPD.

Then we're two. I don't even understand how people that don't have it - but know about it, dare to take the risk. There really is no high, trip or amount of money in the world risking this over. Honestly, i would rather have lost both of my legs and ability to speak than this, and if this is permanent for me i would rather have taken my chances with cancer, because if i haven't seen any reduction in symptoms in 1-2 years i'm done. I admire people that can go on living with this, but i wont.

On 3/27/2021 at 4:21 AM, chase3438 said:

I have microdosed many times and I drink and smoke pot often. These things have never worsened my symptoms. 

They have without a doubt removed your chances of actually recovering though. Afterall, cannabis is a known cause for HPPD and it's what caused it for me. So with it you've most likely kept the fire burning so to speak.

On 4/22/2021 at 8:02 AM, Gonich said:

Sertraline will worsen symptoms for the first month. But after that many people said, that their HPPD is basically gone.

Yea, it's really interesting. I read a post on reddit about it yesterday were a girl said that it saved her life, still some visuals though, like vs.

On 4/18/2021 at 1:49 PM, cosmiccharlie said:

The afterimages went away over the course of a few months I believe and no I am not pulling your chain about my symptoms getting better.  They really have and I am extremely grateful for that.  As for the weed, I found myself in an emotional hole about 1.5 months ago with deep depression and high anxiety.  When talking to a therapist, she mentioned that I may have PTSD from various childhood and military events.  I live in a state in the US where medical marijuana is legal and it's pretty easy to get a prescription so I did.  Weed had helped me out of funks in the past and at this point I had been fully sober from all drugs and alcohol for over 2.5 years so I said let's try it.  I ended up eating edibles 4 times over the course of one month.  I think it did something spiritual for me but ultimately it made me realize that at my core I am an addict and if I want to have a happy, successful life I cannot have drugs alcohol in it.  As for the symptoms, like I said for me I have always had some level of visual distortion in the form of trails and undulating surfaces (again I at 15 hits of acid in one night 13 years ago plus many other trips).  The weed seems to have slightly increased the intensity of these visuals and made me feel a little spacey and less sharp.  I believe this will go away with time as it has in the past.  Overall, it was probably a reckless experiment but when one is desperate you get to the point in which you are willing to try anything.  

Hang in there, you'll be okay just give it 6 months and see where you're at then.  I think you have a good shot at a full recovery. 

I'm glad to hear mate, it would be a dream come true if just my VS would go away, i really don't want to open my eyes in the morning because the flickering everywhere drives me nuts.

Ok, i hope that it calms down for you again and i'm happy you didn't get your afterimages or VS back! 

I will mate, thanks!

44 minutes ago, Reflector said:

I get some peripheral vision motion occasionally but that's about it. 

Then you're "lucky" in a way, visual snow and ghosting really sucks.

Sorry to hear that this happened to you, but don't you have any other visual disturbances than the trailing?

Do you think it can go away naturally? But i will look in to ibudilast! I can't buy it here in Sweden though and i can't find it on drugs.com to check if it has any interactions with Citalopram and Lamotrogine.

Can you guys relate to this? before i got this i had energy like i was on cocaine, i literally flew out of the bed in the mornings and was pretty much always alert (except for a period were i suffered from insomnia). But since this started it have never felt fully awake, it feels like i'm walking around drowsy in a mist and my head feels heavy. Besides the visual snow this is actually one of my worst symptoms and i wonder if anyone can relate to this here? If so, how long did it take for it to clear up? Because i'm really having a hard time seeing that i would be able to live with this for the rest of my life on top of the visual disturbances. They would have been so much easier to deal with if i only felt clear in my head again.

If you have no visual disturbances you don't have HPPD, which you should feel very thankful for! A tip is that you stay away from all drugs that are known to cause it for the rest of your life, which are all hallucinogens (including cannabis), but even MDMA has been proven to cause HPPD. I've also talked to people that have gotten visual snow from cocain. So the best thing is just to stay away from all drugs.

1 hour ago, Reflector said:

Thanks, @Hall89, I'm ramping down from almost daily use for 35 years (with some periods of abstinence here and there) so this is progress for me. 

Keep it up mate! When did you get your HPPD and was it weed that caused it?

14 hours ago, cosmiccharlie said:

Things can always get worse unfortunately, and sometimes we don't realize how much we have until it's gone (cliche but seemingly true). 

As for my VS, today it is gone but when I did have it it was very scary and made me feel extremely guilty.  I think it was the first thing to go and I'm not sure it ever came back.  This was about 12 years ago when I was at the tail end of my first round of psychedelic adventures.  It was a gradual reduction that was difficult to notice until a few months into recovery.  When I did have it, it was definitely bad.  Now when I look at a white wall, I see swirling colors and minor surface vibration.  It's not very intense and I can manage it.  One of the symptoms that bothered me the most was afterimages.  If I looked at a stop sign for example then looked away I would see a very clear image of the shape, the letters which would change! Even when I kept my eyes fixed at the different point. It would sometimes grow in size, change color and do other things.  Thankfully, nothing like that is a part of my life any more.  Even the effects of my recent experiment with weed are dissipating (two weeks sober now).  

I would try and relax man, you will get better just try to let it happen.  When your body heals from a cold or other injury do you spend large amounts of time waiting for it to do its job or try to will it away?  Probably not, we just let our systems work and trust that they will take care of business.  A similar perspective can be adopted here. You are at the whim of your body, mind and this disorder.  Accepting that can be a huge victory and enable you to get past it while it's still a part of your life.  I know things seem hopeless but they really never truly are while we still have breath in our lungs.  Suffering comes with life and how we respond to it very much dictates how happy we are.  Fighting it in my experiences usually leads to more suffering.  For me, acceptance was the answer to many of the problems that I didn't have the power to solve.

Anyway, venting is good and this is the place for it. I wish the forum was as active as it used to be, hopefully it will return to normal at some point. 

Take Care 

Nick   

Yea, ain't that the truth! But besides going fully or partly blind this is on the top of the worst things that could've happened to me. I'm serious when i say that i would rather have lost both my legs than this because, because the top things that i love doing here in life is working in photoshop and gaming, now i can't do neither, or well, i "can", but it looks like shit, so it just makes me more depressed and reminds me of what i've lost. 

That's comforting to hear, that this actually can decrease or go away! Because you're not only saying it to make me and others feel better/give us hope right? But i'm glad that you got a clear vision back, because the VS is literally breaking my balls. Same with your afterimages, thankfully i don't have that! How long did it take for that to go away for you? What did the experiment with weed result in? And what in gods name drove you to try that again?

I will do my best mate, and that is very true! I have much experience with injuries, so one would quess that i'd be a pro at this by now. But this is different since there's so little research and so many question marks around it, so with an injury i 100% know that it will heal, but with this there's not that guarantee and many seem to be stuck with it for life, and the not knowing is a nightmare of it's own. But i know that acceptance and trying to not think about it is the only way i'll be able to go on while this hopefully do heal, but every part of my body is fighting it and i have such a hard time accepting that something so life ruining have happened because of two shitty puffs of cannabis. I'm not kidding, if i had the ability to vape every drug that can cause this of the face of the earth i would have done it in an instant, because no know should ever have to go through this shit.

Thanks for answering, i appreciate it!

 

1 hour ago, Reflector said:

Also backed off on the daily weed, limit to a few puffs on a saturday and a few beers. 

Two puffs is what caused my HPPD, so if i were you i wouldn't touch it if you hope to recover.

On 4/8/2021 at 3:08 PM, cosmiccharlie said:

I no longer have visual snow but I still have trails, and see moving patterns on surfaces.  

May i ask how your VS was when you had it? Did you see it pretty much everywhere when you were inside or if you looked at the sky? And if you look at a white wall now, is there really nothing? The VS is without a doubt my worst symptom along with not feeling completely awake/clear in my head. I was at the gym today and when i looked in the mirror that was about 10 meters away i couldn't see my face because it was so grainy/blurry, almlst made me cry. So the VS really has taken my ability to see things clear in the distance.

God i hate this fucking disorder, and what pisses me of the most is how unfair it is, i mean, i know people that have smoked cannabis on almost a daily basis for 5+ years with no consequences, and here i try it for the fourth time in my entire life (only two hits) and gets the worst god damn disorder one can get from psychedelics.

The funny thing is that i didn't think that things could get much worse in my life before getting this since i had been battling a fatigue syndrome for almost a year (insomnia, inability to handle stress, anxiety etc), two herniated discs for a couple of years that gives me chronic pain, the passing of a good friend a few months ago, a couple of muscle tears in november that robbed me of my training and made me unable to work and on top of that relationship problems with my fiancee and love of my life and an increased migraine frequency. All this shit was actually the reason for trying the weed; i wanted to get a small break from everything. It's like there's someone up there that has made it his or hers life goal to crack me!

Sorry, i just had to let that out. But seriously, fuck life! I really wish that i never had been born and now i'm to much of a coward to end this nightmare, i quess it's that small piece of hope that some do seem to get a reduction in symptoms or fully diminsh that keeps me from the noose. But there's so few success stories out there so i have a hard time believing that any of this actually can get any better and that those that claim it just have gotten used to their symptoms.

I woulf take Nicks advice, especially when it comes to staying away from all drugs and training.

If you don't have visual disturbances 24/7 and get like flashbacks then you have HPPD type 1, which is a much better diagnosis. But for it to not manifest to a type 2 i HIGHLY recommed that you stay away from ALL drugs, i wouldn't even dare to touch alcohol if i were in your shoes, neither would i start with SSRI's or any other anti depressant since i've read about several people that it seems to have triggered it for after their drug use. But who knows, maybe they would have gotten ut either way since HPPD can start months after the last use, but i wouldn't risk it i were you.

And yes, i would mention this for your psychiatrist.