one way in no way out

[Guest]

Every little bit helps but it's not restoration.

There's the "you" pre hppd and the "you" post hppd and I'm convinced that there is research directly applicable to this condition that isn't being applied because the vast majority of people in neuroscience don't know much about it. If they did real headway could be made. Use Dr.Abraham and David Kozin as a unit of measure and gauge their progress in the amount of time and effort they've invested and the results are tremendous but they're just two people. Multiply their work by 50 or 100; can you imagine the possibilities? It would be tremendous! This is simply a problem way too complicated and complex for two people to tackle. There have been others but the research stops when the grant money runs out. A case has to be built in support for this condition with a well thought plan detailing the theories behind the dysfunction, treatment/curative approaches and the time + materials to realize these goals. If a team of professionals was on the case around the clock much in the same way other conditions do it's safe to say hppd could be an afterthought and not a life sentence!

[VisualDude]

Have you tried CBT ?

 

Dr A says it is the most effective treatment for HPPD.

 

However, CBT requires one to be willing to change their approach and thinking.

 

 

 If a team of professionals was on the case around the clock much in the same way other conditions do it's safe to say hppd could be an afterthought and not a life sentence!

 

Just like they have cured cancer and AIDS ...

 

One does well to accept management.  And sometimes managements really does correct a problem.

[Guest]

Actually Viz, aids and cancer are contenders for functional cures in our lifetime. If your position and that of others is to remain and accept things as they are then you can expect one thing...

[keep positive]

Wow. There is hope.

 

I'm going on 8 years. My life is good. I take Keppra 500mg daily. I'm finishing up grad school, got married, became a father, am a social person again, have progressed in my career and I've given up drugs. All positives. My mind doesn't live with HPPD anymore. I've freed myself from the shackles of worry and regret and I live my new life with acceptance and accountability. It is what you choose it to be.

[Guest]

I pretty much accomplished the same without meds until year 8 when my body started to breakdown. It's one thing having hppd, it's another getting old with hppd.

[LethargicAcid]

Hope1 your name is hope and your making me depressed... Can u please like erase ur comments... I'm trying to get some sleep and I came here for hope and ......... I guess I have to rely on myself to calm me down. At least I have valerian root I guess.. Bandaid for .. Can u please erase it

[onelovez]

Everybody is entitled to their own opinion LethargicAcid.. the truth is we are fucked, but different people have a diffrent view about it.

I refuse to accept life as it is right now. Maybe if I did enjoy life in any way at all, maybe there would be a chance for me to accept this condition/life.

Accepting it is totally against my personality - something that I don't think can change a lot.. and against my philosophy.

I compare it to be getting raped or something and having to smile at the same time, where smile stands for acceptance.

Would that ease your pain? I do not think so. Even if it did would you smile knowing that it will take even more of your dignity, than already has been taken, away from you? Now its more like a trade off. I feel being raped by god in a metaphorical sense, i Just can't cheer to that.. and im not saying this to make it sound cool. I mean it. I don't think we are any miracolous beings, we are more like viruses or actually medium for the virus(dna), that happens to be conscious of it.

 

I dont expect anybody to understand me or agree with me.

Then as well.. imagine if every sports man accepted their failures, would he ever be able to reach the top? In my view the answer is no.

And im a born rock'n'rolla.. (that can't takes drugs no more, or socialize.. lol anyway..) im either on the top of the world or id rather not be here at all.

So.. I will still give few things a shot and try to get out of this situation.. Am I gonna accept my condition? I hope not. Maybe if I do, I will not stay motivated enough to find a cure - and never reach the top of the world? what kind of rock'n'rolla would i be then?

So please people who say they accept their condition - erase their posts lol.. LethargicAcid just joking

[Guest]

You know what?

Give me 10k and I could turn it into 10 mil for the sole purpose of research into this condition.

I graduated with a degree in communications and if given a modicum of funding I can out this condition in the damn map. We will have to turn away researchers....

[onelovez]

You know what?

Give me 10k and I could turn it into 10 mil for the sole purpose of research into this condition.

I graduated with a degree in communications and if given a modicum of funding I can out this condition in the damn map. We will have to turn away researchers....

 

shit if you had asked me about it few months ago.. im after loosing my stock, due to stupid decisions (didn't cash out investments in a good moment)

im hoping to make this cash back, but it will take maybe a year..

 

what do you mean - turn it into 10 mil?

Either way - don't you wanna do it in your free time, for free/for yourself? Im thinking of doing the same sooner or later, but its hard when your brain feels like a jelly. There is a lot of knowledge to be learnt about neurochemistry of brain in a first place.. It kind of scares me to even start, but I hope to that I will steadily get into it soon.

Maybe we should try do some research together - get as much data into one place/website, then gather some thoughts.. We could do it even few hours a week, but in few months time we would have a good bit done.

Also check this out - I think it could be essential for what you want to do: http://hppdonline.com/index.php?/topic/4459-i-have-an-idea-for-a-website-that-could-help-us-in-finding-solutions/

 

come on guys lets fucking unite and work this out.. nobody is going to do it for us..

my idea would be: lets get all we know into one place, like google sheet or whatever . lets make a skype group chat so we can echange info and improve our understanding on the subject (and we get to chat about some bulshit on the side) and then we can make some solid "database" on what we know, that anybody then could comment and verify and so on...

hope1 i put my hope in you

[Guest]

There's been a lot of talk about doing a documentary on hppd. It's a novel idea and one that can help spur interest but people by and large have a short attention span which is why a tailored approach in outreach and education must be made in vignettes tied to a non profit that takes donations as well as apply for grants for research with a competent management at the helm coupled by an accompshed, credentialed advisory board. Spoon feeding this condition in short, professionally done clips which end in diverting the audience to the non profit's website encouraging donations is what I think could be a sound approach. We don't need to reveal our identities necessarily and at the same time reach a mass audience that is bound to cause a swell of interest in hppd. Ideally I'd like to see a donate button on this site anyway but people tend to give when there's a plan leading to a goal. I get that this site's primary focus is support, to save lives but to what end? Living with hppd is not living. You're alive but not experiencing life at all to its fullest. I want to help, in all sincerity I want to give hope by moving beyond a shoulder to cry on. I've been there, had people to lend me moral support and have limped by with this horrible affliction since 1997. 18 years without the possibility of parole. Let's please work together, conspire on a way to help ourselves. Maybe my idea isn't the right way to go about it but it's a start. There's got to be a way out notwithstanding being buried six feet under.

[onelovez]

hmmm... that would be some sad documentary - I can picture some people talking "I feel like a zombie, my life is hell" and so on... It could be even somehow interesting for an ordinary man.. The documentary would be good, but at later stage I belive. Its gonna take a lot of work and probably bit of cash to do it (traveling around to do interviews etc.) especially if you want it to be done well.

I suggest - first organize ourselfs (on the forum as well as some kind of chat like skype), collect some ideas, everybody can do what they like/do best, start some research collectively, build the website - which would also spread awareness and include all the information on HPPD, causes, ways of dealing with it. There is like thousands of people affected and they don't know who to talk to anymore cause they can't get diagnosed and the ones that did - still don't know how to go about it. Every HPPD patient has to bring his own research to the doctor to get something right prescribed. The website would be all the info on a plate, for anybody who needs it: patients, doctors, researches.. It would be also a good source of info, for the documentary itself at later stage.
Donations also could be an option on the website.

if anybody wants to text/chat about it live, send me a priv message with your skype nickname

[LethargicAcid]

onelovez, just because were "fucked" doesnt mean we have to let it affect us. I can still derive pleasure and emotions from life just like a healthy person, so i am actually loving my life. 

 

Thanks for helping me realize that I cant rely on this site for hope. 

[onelovez]

Im happy for you man. Im not so lucky - but either way.. my life as well as your life can be improved, always. Im here for this reason, not to be whining about how bad my life is.

Its always good to feel better aint it? So, LethargicAcid, don't rely on the website, but it would be great if we unite and do some work. If one has not much time to do it - even an hour a week of some kind of help to the "hppd ultimate project" - lets call it .

Many great things in life happen by accident, (new people, inventions, hobbies etc.), maybe accidentaly within that hour somebody could come across something thats really important, even if its only a small clue, but leading to some bigger idea.

I don't know what about you guys. I am dedicating my life to looking for solutions for HPPD. And you know what.. im fucking excited about it. This project is like the most positive thing that I can think of within last 2 years.. it would be great if any of you come along!

I will be making a group chat soon - come by and see if you like it.

[LethargicAcid]

 onelovez. what do u mean, not so lucky? sorry. my hppd could always get worse i guess so im counting my blessings. never smoking weed again or drinking. 

 

hey , i am planning on making a youtube video for hppd help. putting a lot of thoght into it. i theorize that the anxiety and depression are beatable, besides im pretty sure that the visuals in themselves are harmless. its just getting over the fears etc. fears cant do anything to you guys. remember that. your mind is just playing tricks on you. thats why i am trying to get better at transcendental meditation. which is all about transcending the ego- realizing that you are not your thoughts . realizing that the world isnt what it seems. realizing that fear cant hurt you. its about humility. realizing that we arent as special as we may think and that we can always be wrong - including fear. I am seeking a therapist and getting CPT. which step by step gets over ptsd-like anxiety. which i think that we are suffering from. 

 

yeah im planning on making a youtube video. its gonna have a video of me, as well as editing with words on the screen and graphs and probably hppdonline and you guys can be in it if you want!! whatever you guys have learned to cope with it, no mtter what it is. we can all be in the same video and spread hope and advice to fellow hppd sufferer's. or visual snow sufferers. lets make this shit go viral ! spread awareness so that people wont get hppd as much, government can notice, and hppd sufferers can learn. 

 

we can make a thread about this. tell youtuber's the challenges we faced and what weve learned. i want to do this onelovez, and everyone else. we all suffer from the same condition and we all realize how hard life can be so we can cooperate! not in this for the money or fame but for love and helping people. 

[Guest]

I'm going back to chasing my own tail.

This was a place for hope when its founder was doing some amazing work both with the support given by this website AND making headway in research. The formula for progress and hope doesn't work with just one of the two covered.

[onelovez]

 onelovez. what do u mean, not so lucky? sorry. my hppd could always get worse i guess so im counting my blessings. never smoking weed again or drinking. 

 

hey , i am planning on making a youtube video for hppd help. putting a lot of thoght into it. i theorize that the anxiety and depression are beatable, besides im pretty sure that the visuals in themselves are harmless. its just getting over the fears etc. fears cant do anything to you guys. remember that. your mind is just playing tricks on you. thats why i am trying to get better at transcendental meditation. which is all about transcending the ego- realizing that you are not your thoughts . realizing that the world isnt what it seems. realizing that fear cant hurt you. its about humility. realizing that we arent as special as we may think and that we can always be wrong - including fear. I am seeking a therapist and getting CPT. which step by step gets over ptsd-like anxiety. which i think that we are suffering from. 

 

yeah im planning on making a youtube video. its gonna have a video of me, as well as editing with words on the screen and graphs and probably hppdonline and you guys can be in it if you want!! whatever you guys have learned to cope with it, no mtter what it is. we can all be in the same video and spread hope and advice to fellow hppd sufferer's. or visual snow sufferers. lets make this shit go viral ! spread awareness so that people wont get hppd as much, government can notice, and hppd sufferers can learn. 

 

we can make a thread about this. tell youtuber's the challenges we faced and what weve learned. i want to do this onelovez, and everyone else. we all suffer from the same condition and we all realize how hard life can be so we can cooperate! not in this for the money or fame but for love and helping people. 

 

LethargicAcid, I dont know if thats that you are asking me about, neither I don't know if anybody here really wants to listen to it, but since you asked.. All i will say is that things that were most important to me, that made me a little happy in this nasty thing called life are gone. The source of my happiness was being able to understand things around me, people, thoughts, ideas.. being able to share them and even more importantly interacting with the world, the people, exploring things, learning, experiencing, creating and so on. Now I don't feel like doing any of those. My abilities to do those things feel massively limited. Maybe I can still do some of those things - but why would I if they are not pleasurable anymore, instead they are painfull as fuck. Interaction with other people is a big deal to me (its also needed in most things I ever wanted to do). Now I try to avoid people as much as I can. I have bearly anything to tell them anymore except for my problems, or nothing at all.. (I hate me being talking about problems and I guess its not what other people want to hear constantly..).. I can't even focus on what other people have to say to me, I catch myself not listening at all..) Because of this most of my wonderful friends and family feel like they were dead to me. I could write more but fuck it man. Everything important/relevant to my happines, is gone. I will never be happy if I don't get this back. I was really rich for few moments, got really lucky with a certain investment. I wasted it all on life and other really risky investments (rock n rolla style).. I learnt my lesson, but anyway - I know I gonna make this money again within 2-3 years. But again. the process of making it has become annoying rather enjoyable and even the thought of having so much money isn't enjoyable anymore. Instead of having this money Id prefer to feel ok on everyday basis and be able to enjoy any of the things I like - whoever has that is the richest guy in the world. I look at the drunks in the street that "their life is fucked". Some of them tend to laugh. Sometimes I look into their face when they do and I can see joy. I envy them.

 

I'm going back to chasing my own tail.

This was a place for hope when its founder was doing some amazing work both with the support given by this website AND making headway in research. The formula for progress and hope doesn't work with just one of the two covered.

The project I wanna do, is covering both of the aspects you are talkin about. You can't count on just one one person (or give up just cause one other person did) especially when we are dealing with such a complex problem. Now you will be able to count on many, cause there is more people interested in this project. They are excited as me. I hope we will be able to provide the support that you talk about, apart from the research. so don't go and stay tuned

[tomsk8]

After 12 years of this shit I think the best option is suicide, honestly. Sorry

[onelovez]

No need to be sorry I totally understand you.

[Guest]

I created a website www.neurogroup.org.
Its just a page right now but I can easily add more however I'm not doing the work myself simply becuase I don't know how. This is a group effort so I'll take input from others and content that they'd like to see uploaded. I can add a donate button to an account that will be set up with a non proft sponsor when we all feel comfortable with it. I can be emailed at neurogen00@gmail.com