gobigorgohome

I think when you're first hit with HPPD it's totally understandable to give yourself a little "break"--to take time off, to be seen if you want to, to rest and eat well and do a bit of research and find support so that you can understand and get your feet underneath you. After that, I think it's best to live! If that means taking maybe one less class, do so. That's perfectly understandable. Take three classes a semester instead of four. It will feel so good to stick in it, and use that extra time to do art, to take yoga classes, to be with friends, to work--don't use it to sit around and feel sorry for yourself. The more you disengage from your life--from the things you really, really want--the less your life is going to look and feel like your own. If you have a college you love, and major/course you want to pursue, then by God do it! And adapt a little bit for a while--as I mentioned, less classes, or maybe you sleep a bit more, or maybe you sober cab your friends for a while (they will love you for this.) I know the school stuff can be really, really tough, because you feel like so much "less." But try putting those thoughts aside for a second and just trying. When reading, instead of panicking when you lose your place, just take a breath and try again. Try easing back into things--maybe start small with one class somewhere while working. You might be completely surprised with how well you do! While I can feel a bit weird at times, I find that if I stop and take a breath, I can still complete an assignment beautifully. The fact the I feel this way doesn't reflect in my work, and that grows my confidence. We always think we're doing worse than we are. HPPD can be--and this sounds so odd-- a great chance to reevaluate. When I was hit, I was working a job I hated, and supremely lonely, and in horrible living circumstances. So when the HPPD came around, it completely floored me. But after struggling for a while, I realized how good it still feels to live life. Yes, I had to fake it for a long while--force myself out to do things, force myself to apply for things, force myself to be around friends. But guess what? Life has some good forward motion when you lean into it. Suddenly things did start falling into place, and I found myself 'faking it' less. While I still have HPPD, I also have an awesome life while the HPPD gets better (and it is/will get better). But sitting at home is like sitting and staring at your broken leg while it heals. Hey, it's going to take a while. In the meantime grab some crutches and head out to your favorite bar/coffee shop/restaurant to see a friend. Time will pass quicker, and sweeter, and other things will start to matter again.

Hey all- Thought I'd come back on for a hot sec to let you all know how things have been. Brief synopsis of my tale (which of course, is quite similar to many of yours.) I took LSD Aug 2011 and was hit full on with HPPD a couple months later. Before and after I was smoking, drinking, with MDMA thrown in once every couple of months. I'm 24 and female (one of the few, it seems!) My visual symptoms are apparently minimal- I've got static snow, and things move and breath a bit (I like to sing "I'm on a boat, motherfucker!" to myself whenever I notice this, because it honest to God feels like I'm on a boat sometimes.) My HPPD is more of the DR/DP/brain fog variety, or at least that's the half of it that hit me hardest/got me on this site in the first place. As an update: I tried sobriety for a while (as in no drinking alcohol or caffeine), and definitely felt an improvement. Better mood, less visuals, unless I was tired or stressed. As I started feeling better, I started sneaking in a beer or two or even (gasp!) a cup of coffee, although the latter would get me feeling pretty darn weird. And then a couple weeks ago I 'went out'- I'm talking maybe three beers and a shot-- and it put me back a bit. Stronger brain fog, and some oh so lovely experiences with sleep paralysis (talk about weird shit, but this site helped me deal: http://www.world-of-lucid-dreaming.com/sleep-paralysis.html Last time it happened, I simply relaxed into it, wiggled my fingers, and it went away without anything scary happening). So I fell off the sober band wagon, and am trying to get back on, but damn do I love my stouts and teas. But anyway, despite the ups and downs with HPPD, I am doing a whole lot better. For a couple of reasons, which I will list below. 1.) Hope and forgiveness. This was really hard for me. Whenever I would notice the HPPD, I would immediately start beating myself up. "How could you take such risks?" "You were so bright, and had such a promising future, and now you've ruined it." (Not to toot my own horn.) I would get stuck in these beliefs for days, weeks, and months. And then one day I said, fuck it. And I decided that it just was. In the same way I have brown hair, or like to run, or am a certain age. When I used, I was acting in accordance to who I was at the time- adventuresome, young, social, trusting- and my actions aligned and reflected that reality. Accepting this as my current reality really helped, and other thoughts/beliefs started filtering in, such as, "If anyone can deal with this weird shit, it's me." "A lot of people have had 100% improvement, and lived full awesome lives--why can't I?" Also, I've taken the heaviness out of it. This isn't a death sentence. I have no reason to give myself a worst case scenario diagnosis. I saw something Rene wrote about just getting on with your life, and that is such sweet advice. No one's telling you you'll suffer forever, just that you have to deal with it for now. I do have hope for a full recovery- either naturally, or with some medical intervention--and in the meantime, I mean to live fully, which leads me to... 2.) Living fully. When I first got HPPD, I kept going for a while. But I was living a sort of a half life--foot half in, half out. And living half-assedly reflected in how I felt about myself, and fed into the "You suck" type thinking. Now, while I'm far from where I'd 'like to be,' (pretty common phrase), I'm taking concrete steps towards the life I'd like to have. That means pushing HPPD aside to just get on living. I'm starting my own photography business, pursuing my hobbies (rock climbing and frisbee, to name two), investing in friends and really loving and feeding into them (and allowing them to do the same for me, even those who don't know these silly things my brain is currently doing.) I'm ignoring it, and my quality of life is thus much higher. I also take less crap- I've cut out people and activities that make me feel shitty. 3.) Therapy. Alright, you can all stop rolling your eyes. I'm not talking about somebody holding your hand and asking you how you're feeling. I'm talking about finding someone who really understands behavior & emotional intelligence. The brilliant women I meet with has simply made life easier by helping with some basic stuff that wasn't a go even before HPPD. 4.) Work. For a while I told myself, "You can't work like this!" I used that as an excuse to avoid finding a job, apply ingfor graduate schools, for putting my life on hold. But life doesn't wait, and it feels so much better to stay in it's current. Have something you want to do/would do without HPPD- go to a certain school, live in a certain city, work a certain job--but are afraid you can't because of HPPD? Do it anyway. Live life while you work things out. Of course, still pursue treatment options--and yes, give yourself whatever window you need to do that, to readjust lifestyle, whatever--but after you've caught your breath, get on with it! I just backpacked for a full week, and enjoyed a few theme parties, and finished a couple of beautiful books, and have dated and taken classes and applied for stuff--and it feels much better than lying in a ball and practicing avoidance behaviors--sleep, tv, video games (even though I'm really bad gamer). These things are really good breaks in moderation--IN MODERATION--but are not a way to live. I keep thinking--if the DR/brain fog completely lifts, I want to wake up into a life I actually want to live. Which feeds into itself, and makes the DR better (brain fog still sucks dick, but so it goes. I got a job serving, and it's fine-it requires a hell of a lot of short term memory, but I can do a lot more than I thought. From what I read on here--I think we/you're all a lot smarter than you think.) I think I got unlucky--that we all got a bit unlucky with the chemical russian roulette. Doesn't mean life is over, and enough time has passed that I'm not the same person I was, I can't go back there. Obviously, this advice isn't ground breaking. But if you could have seen me a few months ago compared to now--I'm like a new person. Anyway, overall, I would say I'm on an upward trend. Good days far outweigh bad, and especially when I'm well rested and fed, I can feel pretty dang normal. Things creep back up when I'm stressed, or not sleeping well, or drink too much. But I'm forcing myself to do things that scare me--like read and write, even though the short term memory trips me up. Oh well! Better to push it, and practice it, than ignore it. And as for relationships- for the people I'm around a lot, and who notice the spacey stuff past just joking about it--I've been able to simply share what's going on, and that takes some pressure off. I still own it ("I'm sorry that me being spacey has affected you,")--but I don't own it as some integral part of my personality-- ("It's a symptom of this weird thing I have going on, and I find it annoying too.") Anyway, keep up the good fight, everybody. Thanks for the support, and start living! Life is still a whole hell of a lot of fun, and surprising, when you're able to keep going, to keep going after it. And yes, I do think we'll get better. Think of all the good stories on here, or maybe even more importantly, all the people not on here. I'm still weighing trying a couple of meds for a while, but haven't, simply because I do feel good, because my life is slowly starting to feel like my own again. PS: And I must add! For all of my fellow HPPD ladies out there--I was able to realize that my DR/brain fog gets much, much worse right before my period (eh deal with it, men). Noticing this pattern took a lot of the fear out of it. It helped to acknowledge the link, and not take it as something more serious (it would suck to feel so much better, only to have things get super bad for seemingly no reason.) Not sure if this is the case for others, but there it is. Alright, that's all I got.

I couldn't get a prescription for Keppra, but was prescribed lamictal instead. Are they similar, do you know?

I know! It was such a frustrating experience. All she said was, "We know Keppra can have nasty side effects, so won't be prescribing it." AKA, "Although this may help you, we need to protect ourselves first, even though you are telling us you are in a safe environment where side effects will be monitored." So yeah, sweet. I have another appointment end of the month- I set up appointments back to back in case the first psychiatrist isn't interested in giving it a trial. What these people seem to be missing is that despite my current quality of life, I'm am not suicidal, and if some med had that effect on me, I would recognize it as a side effect, and discontinue immediately. Grrr. Also finally got my neuro-pysch results back. And guess what? I was spot on. While I was spot on/above average across the board, my working memory was ridiculously low, which didn't match up with my other results. So, great. Difficulties learning for me. Yippee.

(And yeah, I'm trying to get a prescription for Keppra, the 'wonder drug' around here at the moment! But I went to a neuro today and they gave me the run around- told me I needed to be seen by a psych. Great.)

Hmmm...does the Neuro PS really help? One of those supplements I could see people pushing at finals time to earn an extra buck . But if it works for you, I'll take your word for it!

Awesome, Boogres, glad to hear it! I had a long awaited appointment with a neuro today- brought my big stack of papers to push for keppra, and they basically said I needed to go to psychiatrist instead. Pushes me back another month until I'm seen. But with all of the positive keppra trials, trying to keep my head up. Keep us posted, good luck!

Hey all- So, finally starting to be seen. My most annoying/troubling symptoms have to do with my working memory/recall/general ability to think clearly (brain fog). Pre-HPPD, I was a bit of an annoyingly focused student; currently, I have trouble following through with even the simplest of tasks (especially anything requiring abstract thinking or sustained focus). Lower than normal energy levels certainly don't help. Got some neuro-pychological testing done recently, and am eagerly awaiting the results. Some tests were freakishly easy (when it came to noticing minute differences in visual details, I was spot on), while others brought tears to my eyes (trying to remember a list of letters after counting backwards in threes). I'll be sure to share my results with y'all as soon as I have 'em- should pinpoint precisely where my specific weaknesses reside. Anyway. My question is- has anyone had any improvement with cognitive dysfunction using the likes of adderall, wellbutrin, or sinemet? Pre-HPPD, adderall made me feel too focused/speedy; however, given my unwelcome new brain wiring/ deficiencies, perhaps it would bring me back to my much missed baseline? Wanted to check if anyone had experienced any worsening of symptoms, or unwanted side effects? Cheers- gobig.

Hurray for HPPD online. I hope any new sufferers find this site IMMEDIATELY so they can get right on track to coping/recovery.

Better memory and recall...that sounds like a dream! Still trying to get in to be seen. Just got some neuro-pychological testing done- will be curious to see what the results are. I plan on going on keppra/meds, and then re-testing, so can see if actually helps with the cognitive dysfunction. Good luck! Keep us posted!

Eh, just got off my first phone call trying to schedule an appointment to be seen. Incredibly painful. After explaining/describing the situation: "...So you want to be checked into our drug rehabilitation/ substance abuse program?" "No, no, I'm not addicted and I don't abuse drugs. Never have. I mean, I've used drugs, but only a handful of times, and I was never addicted or anything..." Irritated silence. "Okay, so you're hallucinating?" "No, like I said before, it's not hallucinations...just visual disturbances. I repeat, I do not have, and have never had delusions or symptoms of pychosis. Anxiety and depression, yes, but they are ancillary to the other symptoms." Irritated silence. "Um, I'll leave a note, but I don't think anyone will be able to see you without a recommendation/consultation..." And so it begins! So looking forward to this. Any 'interesting' doctor horror stories to share? Or, on the positive flip side, support/success stories?

(sorry, know nothing about that vendor, just wanted to get a shot of the book cover- here it is just on it's own: http://ecx.images-amazon.com/images/I/41eEIqbM9PL._SL500_AA300_.jpg)

Short-term memory problems are the most frustrating for me, along with delayed/messed up verbal recall. DPDR suck too. I have come to peace with the snow. I'm not crazy about the closed eyed visuals, but if they are here to stay, I can live with those as well (or at least become very good at ignoring them.) As with the impending feeling of doom/dread- that's anxiety. I know the feeling because I had anxiety/those feelings looooong before I ever even had HPPD, even long before I started drinking/experimenting with drugs. It's cascading adrenaline, and while it feels 'dangerous' or like 'madness,' it is probably the most manageable/ non-permanent symptom. I know all symptoms are jumbled up together, but just because you can't treat one (e.g., visual snow) doesn't mean you can't try to pin point and treat another, perhaps somewhat separate sensation. I'd recommend this book: (When Panic Attacks, by Aine Tubridy)- http://www.valorebooks.com/textbooks/when-panic-attacks/9780717144297?utm_medium=referral&utm_campaign=Froogle&utm_source=Froogle&date=10/28/12&buy=3&gclid=CMjG8bimpbMCFQmCQgodm2UAjQ Helps explain what your body is doing when you panic, along with natural techniques to counteract the physiological process taking place.

That's shit your doctors can't help you out, Sammy. I think we definitely have a problem with over prescribing here in the U.S., but for stuff like this, there needs to be more support. Might be a while before I can try it myself- have to figure out insurance, find a doc, etc. In those who have tried it, how long did it take for side effects to mellow out? Definitely have a history with depression, so do not want to aggravate that (obviously that's an issue right now, due to my current quality of life). What I am really seeking relief from our the cognitive problems (short-term memory, processing information, attention/focus) and the DR (not sure how much longer I can stand feeling like I'm being tossed around in a dreamy boat). The snow and what not I can definitely learn to live with, as long as I have a sharper mind with which to do so.

Ah, Blue Moon is the best! Anyway, I think I used to have a bit of social anxiety. Definitely had generalized anxiety growing up, and this filtered into my social interactions. Truth is, you're still very young. In my early twenties I just naturally became a bit more genuinely confident, comfortable in my own skin. Even in the bowels of HPPD despair, I still have the tools I gradually learned to handle social situations. Maybe just give it a bit of time, don't be too hard on yourself (as in, going over everything you did after a social encounter. Say, "That was a good practice run!" and let it go. People really don't notice if you're uncomfortable, and if it's not a great connection, that says just as much about them as it does about you.) Just give it a bit of time/practice/patience. And yes, I keep telling myself, "Once this DR shit clears up, life with be a piece of cake!" Although I know all of my old fears/insecurities are waiting for me on the other side (should the other side prove attainable for me )