A mild success story, but looking for more

[buccosfan2004]

Hey guys --

 

My story, real quick --

 

- "Good" kid, didn't do a lot of drugs -- basically none beyond pot

- When I was 20, junior year of college, my roommates got real into LCD -- I tried it a few times -- the first time I did it, I took three hits because I was an idiot -- started tripping balls, the whole thing

- And then - DUN DUN DUN! - it never went away. Trails, severe/crippling depression, visuals all fucked up, etc. I spent a little time online, discovered I had HPPD, read stories about people going insane and I had a breakdown, basically

- But, I NEVER told anyone. I was embarrassed and ashamed. I white-knuckled it through class, around family, around friends. 

- After graduation, I moved to NYC and started drinking heavily. Soon after, cocaine heavily. Booze eased the anxiety, cocaine made me talkative and feel alive again. This is around 2006.

 

Now, 2013, my life is not terrible.

 

I'm a successful writer. I write children's fiction and non-fiction. I have an absolutely wonderful fiance (who knows nothing of my HPPD). My family knows nothing of my HPPD. I had one girlfriend who I told in 2008 or so, she got me to a doctor, she got my brain examined, I found out there was nothing wrong with my brain (what a relief!) etc.

 

I take clonazepan - 1mg daily. I took prozac for a while, but stopped -- I was sick of the weight I put on, sick of not knowing why I was feeling what I was feeling, sick of feeling sort of numb.

 

So I wanted to say this -- I HAVE HPPD, I STRUGGLED HORRIBLY, I WHITE-KNUCKLED IT, AND NOW I LIVE A RELATIVELY NORMAL LIFE, I HAVE MY DREAM JOB - THIS SHIT DOESN'T HAVE TO END YOU!

 

Here is where I struggle though, and I struggle everyday:

- My life would have been better. It should have been better. It should have been a wonderful life -- instead, it's a passable life. And I have no one to blame but myself and the unlucky brain chemistry that lead to this situation.

- I miss smoking pot. I miss it everyday. I LOVED pot. As a writer, it made me creative. It gave me a social circle of buddies -- I was so happy smoking pot and playing videogames and watching movies -- not being lazy and useless all day, but doing that for two hours a day -- that was something I loved.

 

My question for you guys?

- How do you deal with the knowledge - the daily knowledge -- that you are basically wounded. That you fucked yourself.

- Is there ANYWAY that I can smoke pot again? Whenever I try now, I just feel weird. Like - not exactly paranoid - but weak, shaky, just want this to end. I miss laughing, I miss thinking bad movies are hilarious, etc. 

 

Anyway -- that's all -- if anyone has questions about my experiences, I'll answer. And would love to hear your reactions on the pot thing

[disguyhere]

i smoke daily.. throughout a day.. but in limited quantities... i dont smoke to get blazed i smoke to equalize. It never made my symptoms worse (they didnt need any help for that) ... and it helps me calm down the millions of thought strings i have going at any one time allowing me to slow down enough to work. 

 

i smoke from a bat before going to work.. then before coming home from work.. then throughout the night lil here lil there. granted the amounts i smoke would probably down a lightweight. but they dont really make me high high... just ....good.

 

i know there seems to be a majority on the site that can't go anywhere near it but herbs always been a friend to me and i think without it i probably would have offed myself long ago. nowadays if i get in a funk i just lay down.. burn a bit. and then do my meditation and i'm good

 

 

as for dealing with the daily knowledge of it... i went from promising career in bio-medical engineering, to working a dairy box at a pathmark... to finally getting my shit in gear and all but running reporting operations for a gigantic corporation. I've already learned long ago that if you own your mistakes and accept them as part of your life, then you can deal with the pain the waves of guilt can cause your a lot more quickly, and move on. a good manly cry every once in a while isnt a bad thing either .. and telling yourself that no matter how bad it is and how much damage you did to yourself.. you still survived it.. survived it for a few years at least in your case, 14 in mine. 

 

also.. another thing that makes it easier for me personally is that nobody has it together. even the people who will never in their lives understand what life is like for someone with hppd.. not one of them sees reality for what it is to begin with. the more science shows us the more we realize everything we see is kinda bs to begin with.. so the only difference between us and them, is we dont have a choice but to accept that our world is fucked up... while most people go through a denial about theres on a daily basis thats gotta give you at least some measure of relief  

[buccosfan2004]

Thanks! 

 

I suspect I'm one of the one that just can't go near herbs. But that depresses the hell out of me. I mean, I've had this for about 10 years now -- and I STILL miss the herb every single day. It's like, shit, if I could just get that back -- I'd be damn near as good as new.

 

Appreciate your thoughts on the daily knowledge -- it's tough. I try to read about mindfulness, insight into oneself, all that -- sometimes it gets to be too much and I remember that too much insight into this can sort of freak me out -- but for the most part it helps.

 

The other thing I remind myself is that goddamn -- I have been through hell and back. And no one that I know - NO ONE - knows it. No one one understands that white-knuckle pain of thinking you're losing your mind. That you had so much promise, and one dumb mistake took it all -- not just your freedom or something, but your fucking sanity. It's crazy.

 

But still -- every day is new. Everyday I work to get myself back to whole.

[onedayillsailagain]

1) I tell myself that not only was it my mistake, it was also an environmental factor which played a role (the lack of drug education, nothing warned about HPPD, and the well-known inadequacy of society). I mean, how the hell was I supposed to know this shit was gonna happen? I don't think there's a single person on this forum that knew about HPPD and how much it sucked and just went "Ahh that won't happen to me, I'll just drop some -insert psychedelic here- anyway despite these stories of ruined lives". It's not like they give you neuroscience 101 in high-school either (they fucking should). So keeping the environmental influences in mind, it's not "all my fault".

Other than that I eventually decided: "Well fuck. This is how it's gonna be now, and it's unacceptable." So I research the hell out of it, hoping to make a contribution to finding a proper treatment or cure some day. I mean if I can't live a happy life, I might as well live a useful life. Besides, many people hurt themselves in other ways and get passed it as well. I didn't blame myself when I abused myself with a cocaine addiction. I just moved the fuck on and never looked back, and was very happy for a long time thereafter. Only difference was that I could, because I didn't have any long-lasting effects after discontinuation, unlike now. As you say, your life is a "passable life". The only way to deal with the knowledge that you've royally fucked yourself (IMO) is to not settle for anything less than being unfucked and feeling normal. In that way, the knowledge that you're doing the best you can in this situation to recover from your mistake, cancels out the knowledge that you fucked up and are living with the consequences. Or that's how I live with it.

2) That really depends man. For me, I can't take 2 puffs without going totally paranoid and pre-psychotic-ish (few months ago I saw fucking deer-shaped shadows jumping over the bridge). If you're like me and can't stand pot anymore (I used to be a chronic smoker when I was young, freaking loved the herb), then find an alternative.
Safe things like Kava Kava for example (idk about interactions with Clonazepam though). Just you know, do some research before trying stuff (i.e. don't just go "Hey, Salvia! I've heard of this stuff, let me try it!" only to afterwards find out it can worsen HPPD). Try finding other ways to boost your creativity. There are plenty of supplements and nootropics reported to do so, and IIRC even tDCS has been used to boost creativity.

Like you said yourself: "Damn, I've been through hell and back". Well for me at least I've been through hell and back to the heavens, beyond, and whatever you can think of, back to hell again. Yet of all the worst things I've experienced in my life, the most tedious battles have been within my own mind; something few people can understand. I've been homeless, broke, sick, near-death etc. yet all those things combined couldn't even get close to how hard HPPD can be. Well being homeless was actually quite fun whilst it lasted, but nonetheless. I think we can all agree here that anyone who survives or endures HPPD has an exceptionally strong spirit (unlike what many ignorant fools may comment about HPPD). What keeps me going often is just thinking about how I'll feel about myself when I fully recover from this, be it tomorrow or in 20 years. I can't imagine anything worse than HPPD, so once I'm free I can't help but think of how everything will be such less of a drama in comparison. Hell, I'd probably think torture would be a walk in the park if it were ever to happen to me post-HPPD (hehe might be exaggerating there).

Not to say that I have everything in perspective though. Many days I feel like I'd be better of dead, but I just think about the above and how I've come to far to give up now, and it helps.

Well that may have just all been excessive rambling, but hopefully you can comprise something useful out of that.

Welcome to the forum,
Odisa

P.S. What kind of brain-scan did you get? MRI's for example can't show abnormalities that are usually present in HPPD, afaik. Ohh and to put things in perspective: Not finding any brain abnormalities was a relief for you? Wouldn't it be more relieving to find brain abnormalities instead? Cause then you know it has a chance of being fixed. Or so I think about it.

[disguyhere]

Odisa... aint that the bitch of it... praying to actually have something bad turn up in a diagnosis just to have something  show up? ... i went through fucking years where every doctor i saw couldnt tell me shit about why my skin erupting in legions at 0 provocation.. no doctor could tell me why a few years ago my throat was completely ravaged by gigantic lesions... and why i went through 103-104 degree fever for 2 weeks straight , lost 60 lbs and couldnt get anything more down my throat then water... all i wanted was someone to say you have cancer or aids or some shit.. just cause anything would have been better then ... "well damn. we have no idea whats wrong with you. aint that a bitch."

[onedayillsailagain]

Yep.. I feel ya.

A few years ago I woke up in a hospital, not knowing how the hell I got there. And instead of telling me how I got there, the doctors tried to push me back into the bed (which freaked me out) and wouldn't let me go outside for a smoke, nor tell me what had happened. Apparently I almost punched a doctor and knocked another over, and walked into a sliding door trying to get out of there. I just wanted to have a smoke and get my head straight man! Turned out that the previous night, my brother and I were messing around outside a bar and we both slipped and hit our heads on the curb and we both had a concussion. And never did they think of that maybe I'd realize it would be best to lie down if I knew I had a concussion. Instead they scolded me for not cooperating, tried to force me back to bed, and ended up having to search for me. Well finally my brother found me outside, and he told me what happened and we both laughed our asses off and went back inside to get stitches.

Well, totally different situation. But the not knowing part is what freaked me out then. After I knew, I just calmed down and we called a cab and went home.

[Sam93]

Hey man,

It's good to hear you still have managed to get your dream job and obviously hold down a successful relationship.

Can I ask if you still / ever did suffer with DP/DR (Dissociation)?

[lemondrop]

Dude!! This is what I have been doing. I have quit telling people of my HPPD, because they think I'm full of shit. It has almost helped in a way, I'm starting to believe its all not real. It's just my "migraines."

 

But I'm sitting here about to achieve a pretty intense degree.. and I'm not going to let a little self induced mental retardation stop me!! I'm still the same as before.. just different. woops.

[mikemeas]

On 7/22/2013 at 5:28 AM, buccosfan2004 said:

Thanks! 

 

I suspect I'm one of the one that just can't go near herbs. But that depresses the hell out of me. I mean, I've had this for about 10 years now -- and I STILL miss the herb every single day. It's like, shit, if I could just get that back -- I'd be damn near as good as new.

 

Appreciate your thoughts on the daily knowledge -- it's tough. I try to read about mindfulness, insight into oneself, all that -- sometimes it gets to be too much and I remember that too much insight into this can sort of freak me out -- but for the most part it helps.

 

The other thing I remind myself is that goddamn -- I have been through hell and back. And no one that I know - NO ONE - knows it. No one one understands that white-knuckle pain of thinking you're losing your mind. That you had so much promise, and one dumb mistake took it all -- not just your freedom or something, but your fucking sanity. It's crazy.

 

But still -- every day is new. Everyday I work to get myself back to whole.

this is to real lol

[AF44]

On 7/22/2013 at 5:18 PM, disguyhere said:

Odisa... aint that the bitch of it... praying to actually have something bad turn up in a diagnosis just to have something  show up? ... i went through fucking years where every doctor i saw couldnt tell me shit about why my skin erupting in legions at 0 provocation.. no doctor could tell me why a few years ago my throat was completely ravaged by gigantic lesions... and why i went through 103-104 degree fever for 2 weeks straight , lost 60 lbs and couldnt get anything more down my throat then water... all i wanted was someone to say you have cancer or aids or some shit.. just cause anything would have been better then ... "well damn. we have no idea whats wrong with you. aint that a bitch."

Omggg so true. I was actually praying I had a brain tumor when I first got HPPD. (Even though I knew in my heart that it was the LSD.)