Matt

Figure I'm about do for an update.. I'm still on Keppra (500mg twice daily) and take Klonopin more often than I'd like (.75mg /day). The visual aspects are more than manageable, but it's the DP that gets the better of me sometimes. If I take the Klonopin, life is good. No idea if the Keppra is doing anything, had some noticeable effects in the beginning but could've been placebo. No negative side effects, so I'm plan on continuing with it for the time being. Totally cut out smoking weed and don't seem to notice any long term difference (when I did smoke, I was fine while stoned but DP symptoms definitely flared the day after), still figure it's not worth it and just stopped altogether. Trying to work on my alcohol consumption - I'm not a heavy drinker, but do probably average 12 drinks a week. Would like to stop for a while and see if this has any long term effect (plus yes, I know it's not good with Klonopin). Other than that, not too much to report. I eat healthy and exercise regularly, get plenty of sun, moved in with a girl I've been dating for 1 1/2 years, teach music 5 days a week, read, drink tea, just trying to live healthy and go day to day with this shit. Almost 6 years and things have gotten a little better. Here's my generic "life list"... in addition I plan to taper down on the Klonopin after the holidays (but man, it does make life bearable). Don't drink coffee Don't smoke weed Drink less alcohol Exercise more Eat Healthier Meditate Read Write Practice Record Be a good boyfriend Spend less money Make more money Take up watercolor painting Improve culinary skills Spend less time on social media Wear sunscreen Wear earplugs Anybody out there have any new years resolutions they'd like to share?

Final Update: Not too much of a difference from last post, but figured I'd do one more since there are some slight changes in dosages. Keppra: Didn't notice a significant difference in switching from 1500mg to 2000mg, besides slightly more drowsy. So, recently dropped back down to 1500mg a day (500mg in the morning and 1000mg at night). Been on Keppra now for almost 6 months and would say I notice a 30% reduction in symptoms - mainly Brain Fog, Anxiety and DP/DR (don't notice visuals as much either and when I do, could really care less). Klonopin: Have been taking as needed like I did with Xanax the previous 3 years, and will continue to do so. On average, this comes out to about 7 .5mg pills 3x a week but obsiously varies depending on my activities for the week. Calculated this because I go through 30 a month and really try to limit to 3x a week. May have a 5 day period (because of work, travel, etc.) where I take 2 .5mg pills a day, but won't take any the following week (notice some rebound anxiety and increased DP/DR at about day 3, but nothing worse than what I experienced when I first noticed symptoms of HPPD, before I started any medication). On days where I take Klonopin, I notice a 70%-100% reduction in symptoms. Other: Completely stopped smoking weed (been a month now) and can say it's for the better. I excerices regularly (mostly surfing, walking long distances, and occasinal backpacking trips) and this always makes me feel better. I eat pretty healthy (pescetarian diet - lots of fish, vegetables, tofu, etc. and almost no junk food). Plan on getting back into mediation, as I remember it greatly improving my quality of mind when I did so heavily 10 years ago. Also, I still like drinking but try to limit to 3x a week (not a heavy drinker, may have 2-3 at a time, unless I'm at a party in which case I may have 5 or so) Conclusion: I've found the combo of meds that works for me and feel pretty normal on a day to day basis, so plan on continuing this long-term. I'm completely open with my neurologist and he's extremley supportive (although he thinks I should take Klonopin everyday). The other stuff is pretty obvious and you see it all over these boards (stop all pyschoactive drugs including weed, eat healthy, exercise, meditate, play music, read, socialize, keep yourself occupied with healthy activity!) Once again, cheers and good luck!!

Hey guys. Just another update since I've been on 1000mg x2 day for a month now. Really no negative side effects, except for maybe slightly more drowsy than I've always been. I pay $40 for a month and a half supply (without insurance), so don't plan on stopping. On average I'd say I have about a 35% reduction in symptoms of Brain Fog, Anxiety, and DP/DR - this varies day to day though and some days I feel completley normal. The days when I feel really shitty are few and far between. Haven't experienced a panic attack in months, when before it was a few times per month. Thinking and focus is definitley more clear and overall, I just feel more comfotable in my own body. Also, I take Klonopin 3x a week (anywhere between .5-1.5mg, depending on the situation(s) of the day). On these days I would say I'm 70% back to my normal self. Also worth mentioning I drink a few times a week (usually 3-4 drinks) and still smoke weed on occasion (maybe 2-3 times a month). As for visuals, they're still there if I look for them but not bothersome. As I've told many of my friends, I feel like I'm coming out of a 4 year personal hell. That's all. In anything changes I'll be sure to let you know. Cheers, good luck, and try Keppra if you can!!

I was just open and honest about everything with him - showed him "the" keppra / hppd study and he was willing to let me try. Just bumped dose up to 1000mg x2 a day starting today. Will continue with updates!

Update: Been on Keppra for roughly 2.5 months. First 7 weeks - 250mg x2 a day (didn't really notice any difference) 2 weeks - upped to 500mg x2 a day Past week - upped to 750mg x2 a day All I can say for sure is I've been having way more good days than shitty! Brain Fog - This seems to be the symptom that's improving the most. Varies day to day but overall, I'd say about a 50% reduction as of now. Focus is sharper, my speech has improved, clearer thinking, etc... Panic / Anxiety - About 30% reduction as of now. No benzos today and was pretty fine acting like a normal human in social situations. DPDR / Visuals - Doesn't seem to have too much of an effect on either, but with Brain Fog and Anxiety reduction neither really bother me. Side Effects - Mild drowsiniess any irratibility. Seems to be getting better though and was never that bad to begin with. Will definitely not be giving up on this medication any time soon.

Not sure about that, but will probably decrease your caring about the snow for a little while.

Always appreciate the responses guys! Was feeling very guilty last week after a weekend of partying. Smoked no weed in the past week, took benzos 3x (but never at the same time as alcohol), and had a few beers over the weekend. Anyway, small steps! Trying out klonopin as opposed to xanax on days where I typically need it, in hopes of getting through the day on a single .5mg dose. Also increased Keppra dosage. Been feeling good these past few days and hope the trend continues!

Just an update on my Keppra treatment... Been on 250mg x2 daily for 2 months and can't say I feel too different. Saw my neuro again and we upped it to 500mg x2 daily for these next two weeks and then he wants me to up it again to 1000mg x2 daily in another 2 weeks. I may actually stick with the 500mg x2 daily dose for 2 months or so before increasing (mainly for cost reasons). Also, got perscribed klonopin which I'm happy about. Have been on xanax for almost 4 years, and on days where I do use it (about 3x a week) I find myself taking it twice througout the day, since it's effects only seem to last about 4 hours for me. Even if klonopin isn't as strong, I'm excited that I can maybe get through an entire day with only taking a single .5mg dose. I know medication can't be relied on soley for recovery, but crossing my fingers my DP/DR and brain fog reduces by 50% or so as other members here have described. These are by far my worst symptoms.

Fair enough. Thanks for your reply.

Okay, here's a typical scenario... I take 1 or 2 .5mg xanax before playing a show or at work earlier in the day, then have a few drinks and feel really good, then have even more drinks, then end up smoking a bunch of weed (which is usally always around), and end up saying/doing shit I end up regretting in the morning... I ended up doing this exact thing the past 3 nights. I really want to cut out weed for good. I've been dealing with HPPD for 4 years now and did do a 7 month stint of not smoking in the beginning but can't say I felt any better at the time so have been doing it occasionally since (always when I'm drunk about 1-2 times a week). It's a direct correlation between getting drunk and smoking weed so I really need to cut back on my drinking. Posting this here because I keep telling myself I'm going to cut out weed and cut back on booze, but I never do. Maybe having it in writing on here will give me more incentive? Ideal scenario would be to limit myself to 3 drinks, 3 times a week. It's usually when I go over that where shit kind of goes down hill. Like I said, I'm also on Xanax which I would hope to cut out someday (currently take 1 or 2 .5mg 3-4 times a week, but would ideally like to limit myself to 3 times a week for that). I'm also on Keppra 250mg x2 a day. Thanks guys.

Sobriety (especially all pychoactives), is key if you're interested in getting better! I too see purple streaks of light (mostly at night while driving) and faces in tree bark. Weird, I'm not sure I've seen anybody else mention those things on here...

Thanks for the responses. I'll probably stick with the doctor's recommend dose for now and wait until my next appointment before increasing. Are you guys both long-term hppd'ers?

I've been taking Keppra now for one week, 250mg twice a day. Can't really say I notice any difference. I know it's a really low dose, but can anyone out there provide a timeline for it's effectiveness? I don't have another nereuologist appointment until a month from now, but was thinking of increasing my dose by another 250mg/day if I still don't feel anything by next week. Oh, and as Shadowplay mentioned (maybe because of the low dose), a few drinks even with a low dose benzo didn't feel any different than usual. Not giving up hope for this drug yet!! Not excepecting a miracle cure, but a small reduction in anxiety / DP/DR / brain fog would be awesome!!!!

Going on 4 years. No real improvements, except for the fact that I've kind of gotten used to all the visual distortions, brain fog, anxiety, DP/DR, etc. Just got perscribed Keppra and hoping to see even just a minor reduction in symtoms!

Saw my neurologist today and he perscribed me Keppra 250mg twice a day. I'm also perscribed .5mg xanax to use as needed and my doc said I can still go on using that as I usually do. Anybody out there have experience with low dose keppra + low dose benzo + a few drinks? Sometimes if I go out or have a show, I'll take a xanax and have a few beers and feel normal. Anyway, I'll keep you guys updated on my Keppra trial. This seems to be the one medication (besides benzos) where more people than not benefit, even if just a minor reduction in symptoms.

I'm not going to lie... I do this a couple times a week. 1 or 2 .5mg xanax and 2 or 3 beers and goodbye anxiety. But yes, be careful!!!!!! For me, if I exceed 1 mg xanax and 4 drinks it's blackout time for me. It's only happened a couple times but to be on the safe side, like Jay said, try to avoid if you can.

Do you feel like your cognitive function increased with the decrease of your anxiety? My cognitive skills seem fucked compared to how they once were. That plus DP/DR, anxiety, and brain fog (which I attribute to my cognitive skills being fucked) makes this shit a nightmare. The visuals don't really bother me. Also, how long did you have HPPD prior to eating the acid and recovering? It was really like a flick of a switch and you were better? Ha sorry for asking alot of questions... just intrigued. Anyways, congrats dude!! Can't say I'll do the same, but I do strongly believe that meditation and generally being more spiritual can do wonders.

Another topic I'm curious about... I've had this shit for 4 years now and have just told my parents. Thought it would be a weight off my shoulders, which I guess in some ways it was, but I feel like my mom thinks I'm exaggerating just general anxiety. My stepdad on the other hand, I think can sympathize a little more since he did a bunch of acid back in the day and knows people who've "changed" from it (both good and bad). But I just don't think they get how much of a burden on your life HPPD really is. Anyway, one good thing that came out of it is they're going to help out with the cost of seeing a neruologist and meds if I'm perscribed them. Other than that (and doctors), I've told some close friends, but left out the part about DP/DR and that this shit majorly impacts my life. One of my best friends has it, and in fact his visuals are much more pronounced than mine, but the lucky bastard doesn't have a hint of anixiety or DP/DR from it. I guess my main fear about being more open with friends is that they'll look at me as some sort of drug casualty, which in fact I am. By not telling people, I felt as if I could more easily deny this fact to myself, but it is what it is and there's denying it anymore. I do feel like I should be more open with a few close friends, so if I start acting strange and am thrown into a panic for no apparent reason, at least someone will somewhat understand and cover for me. But another fear in telling even a few close friends is that word will get out in my larger circle and I'll be seen as the crazy dude who did way too many drugs... Do you guys have any particular positive / negative experiences from telling parents, friends, etc.. about your HPPD or do you hide it from everybody?

Yeah, I have no choice but to just put myself out there. Luckily I'm perscribed xanax, which will help while I'm interviewing / getting started out with a new job, but hopefully won't turn into a regular thing. Currently looking for a more long-term med... My doc perscribed me Wellbutrin which I'm hesitant to take, but I have neuro appt this Thursday and am hoping to get Keppra. If they don't perscribe me the Keppra I'm going to give Wellbutrin a go. I know there's no magic bullet for this shit, but if I can reduce my DP/DR and anxiety by even a little then I'll take it

hmm... i find this bass player / hppd correlation intriguing!

Just wondering... I was a guitar/bass teacher throughout college then managed a music school for years. HPPD hit right in the middle of that, but I was already comfortable enough in my position to still be productive. Anyway, I recently moved but the thought of job hunting makes me sick to my stomach. I have what I would call an extreme case of social anxiety. To give you an idea of how bad, sometimes panic will strike while having a conversation with someone I know well (I think it's the pressure of having to carry on talking). Something where I don't have to deal with people on a regular basis would be great... haha.... Maybe if you guys responded with what you do I could get some ideas. Thanks!

I agree, deinitely a must see for anyone dealing with DP/DR! Also, here's a streaming link http://www.tubeplus.me/player/390424/Numb/

Hey Guys, Long time lurker, but figured it was time to officially join the community. Have had HPPD for about 3.75 years. Fairly occasional user of hallucinagens from ages 17-24 (LSD/Mushrooms/MDMA). Should also mention I'm a lightweight when it comes to pyschoactives. Was 1 week about 4 years ago that did me in... Ate about 1.5 grams of really strong mushrooms one night (pretty good trip actually) and then a couple nights later ate some MDMA, stupidly on an empty stomach (insanley intense night of rolling) - felt pretty weird for the next couple days. Then very stupidly, not thinking anything of it, decided to eat a thick mushroom stem about 2 days after the MDMA. An intense feeling of impending doom and panic came over me which lasted about 45 minutes - I have not been the same ever since... At first, I experienced what I would describe as intense episodes of DP/DR and panic (flashbacks? during 1 "episode" I was convinced somebody at McDonalds had slipped me acid), lasting about 1-2 hours. After a couple months of these I was in a constant state of DP/DR and developed (or first noticed) symptoms of HPPD. I experience all the usual suspects - Visual Disturbances (Floaters, Flashers, Halos, Starbursting, Afterimages, Visual Snow, Trails), Brain Fog (have trouble talking and not losing train of thought in the middle of a sentence, paying attention in general), DP/DR (constant "trippy" feeling, emotionless, blank inside), and really bad social anxiety (get's so bad sometimes that I actually vomit / dry heave when in uncomfortable social situation). Also, I have very vivid dreams, which seem to last the entire night - I wake up exhausted every morning from "over-dreaming". Took 7 month break from smoking weed at the beginning but didn't notice any difference, so have occasionaly smoked since, but trying to stop for good. Still drink 8-16 drinks a week. And I'm perscribed Xanax to take as needed, which is usually about 5 .5mg pills a week (take 4-7 day long breaks fairly often). I eat healthy (lots a fish and veggies) and get lots of exercise (surfing, long walks, bike rides) on a regualr basis. Seeing a neurologist soon and am hoping to get perscribed Keppra, as it seems to have diminished Brain Fog and DP/DR for many members of this site. If it does the same for me, I'll consider it a victory of sorts. My doctor has been pushing Wellbutrin, which I have denied, but if Keppra doesn't do the trick then I plan on giving that a shot. Anway like I said, I've been lurking around here for years now and felt it was finally time to join! Told my Stepdad about HPPD today and he told me his brother had a bad trip in high school and was in a weird state for nearly ten years, but slowly came out of it. I was stunned! There's many more of us out there than we'll ever know.