WuWei

I wanted to start this as an open topic for hear people's opinions on this subject. I got really involved in Buddhism and whatever else I could get my hands on after I got HPPD. It's helped me a lot. In a way, I feel like I got HPPD to push me in the direction of things that really matter. I can say for a fact if I hadn't gotten it I would probably died a hopeless drug addict. I've been really into this guy, and after getting into anything and everything I thought might alleviate my suffering (including living at a meditation center with a Buddhist monk and reading volumes on Zen, Buddhism, Advaita Vedanta, and other religions) I found this guy. I only post it here that it might help someone to feel better and see things differently- I'm not being evangelical or anything. Robert Adams is an American Advaita Vedanta master under Ramana Maharshi. He passed away in the 90s but you can find all of his recorded talks here: http://robert-adams.info/ I hope it brings someone some peace. Please share your experiences!

Yeah, I've had that. It goes away... try not to worry about it buddy. Have you recently started or stopped any SSRI antidepressants by chance?

I fumble my words around, can't find the right ones some times (luckily i have a big vocabulary and can substitute other words). Some times I stammer over sentences or slur certain words. I think anxiety has a lot to do with it, and how medicated I am (or aren't). I would suggest working on your anxiety to deal with it.

The E did it... the coke didn't help. You name it I've done it... pharm opiates, Ketamine, DXM once or twice, shrooms, LSD a couple of times, lots of cocaine, a little meth... even heroin once or twice. And of course weed and booze.

The guy on the bus has schizophrenia. If you think you might be crazy you're not. Crazy people don't know they're crazy. I will chime in that when my visuals are really bad closing my eyes in a relaxed way and focusing them in and out while they're closed (if that makes any sense) "resets" the ghost images. At least temporarily. The "coke bugs" (swarming points of light) are always there, especially when looking at a neutral background... and the "technicolor" effect I think a lot of us experience (some people refer to it as "cartoony") also isn't effected IME. Honestly, if the DP/DR and brain fog would go away I would be a happy camper. I've grown accustomed to the visuals and I usually don't even think about them unless they accompany the other stuff.

Yeah, I tried eating less and more often today and it seems to have helped a lot. Healthy foods and eating lighter seems to be the way to go. I've been thinking of doing one of those food allergy blood tests- it's the last thing I can do short of doing a round of Keppra. Insurance doesn't cover the test, but the way I feel after eating almost makes me think in my hypersensitive state I get worse with certain foods. Maybe not... not sure if it's worth the $200 or so for the test and doctor's visit.

Had a great day today... felt horrible last night and took a mg of klonopin... seems to have kind of gotten me out of my funk. No DP/DR tonight and HPPD symptoms were pretty minimal. I feel very grateful for the good days. Thanks for everyone's support.

Just wondering if anyone else experiences this... I don't eat before work usually (I work 3-11) and after I eat at 5pm I get "dizzy" with brain fog and the DP/DR kicks in really bad. It usually subsides around 9 or 10pm... then lately it's been getting worse when I get home- around midnight. Any input? Maybe I just eat too much in a sitting and I should go with lighter foods and smaller portions more often..?? Also I notice if I force fluids (water, gatorade) even though I'm not thirsty it seems to help after a while.

Well, started to feel better for a while there... now things are getting scary again. I'm going to call my doctor on Tuesday to see if she can put me back on the non-generic Lexapro and see if that helps. I hope I don't get any worse... I don't think I'll be able to work. Anyone had any success with Keppra for DP/DR symptoms? I don't really care about the HPPD anymore... but the brainfog and DP and DR makes my life really hard...

I hear you bro... hang in there. I've been having some really bad DP/DR stuff going on recently. You're not losing it or going crazy.

I take Lexapro. I took it before I had HPPD and have taken it since. For me it's a balancing act between too high a dose and too low a dose. Don't discount SSRI's without trying them because they make some people's symptoms worse. If you're depressed you should give them a try. I can't function without it personally. Relapsing is a symptom of depression and anxiety, and to be expected along the way. We all are doing the best we can. It doesn't make you a bad person. Just don't let them put you on an antipsychotic like they seem to be fond of doing nowadays. This might come up especially if you mention "hallucinatory" phenomena. The average GP doesn't have a clue what HPPD is (a neurologist I was referred to hadn't even heard of it). Antipsychotics are a no-no for HPPD from what I understand, and will intensify symptoms.

Yeah, we really didn't talk about it too much, but basically I said I had this thing that was caused by drug use (and now I know by a genetic predisposition to it too). He told me not to worry about it and that he had the same thing for about 10 years and that it would go away. He said he didn't worry about it because he knew what it was from. He told me he used to have after images and trailers and movement out of his peripheral vision, etc. Pretty typical mild HPPD sounding stuff. It was LSD induced... he used to do a lot of acid back in the 60's, along with the occasional other "head drug".

Thanks, Yeah, I don't know if I'll ever have it "beat", but hopefully I can get to a point where it's a non-issue. It runs in my family. My dad has some of the features and my uncle had it for 10 years and it went away. That would be great! I'm rounding the 10 year mark, but I think my case is more severe than his was.

On a side note, a low Lexapro blood level seems to be the issue. I've been increasing my dose and today I feel much better . I even feel good enough to go to my martial arts training that I've had to skip the last few times due to the sleep deprivation I have to endure to go (it's early in the morning and a pretty good ways away). Anyway, I thank god to be coming out of the hell I was in, and that there's light at the end of the tunnel. I get scared that I will end up in this horribly "wrong" place, where there's nothing but anxiety and a misfiring brain... And, worse case scenario, to have to be hospitalized with a bunch of doctors who have no idea what HPPD even is and make me worse by using drugs I'm overly sensitive to and antipsychotics I don't need and that will (from what I've read) make things even worse.

It's hard to describe... sort of like when your brain misinterprets information and makes it into something else. The trashcan becomes a person until the brain rights itself... the visuals create a branch over your head that isn't there... it can be extreme at times... like I'm driving down the road and a truck is along side of me and my brain interprets the forward movement of the truck to me moving backwards. Stuff like that is really scary. Also, it can be "body image" related, like I think my arm is in a certain place in my head and it's really somewhere else... make any sense? Things also move and shift a lot for me, especially out of my peripheral vision.

Hey guys.... been a while since I checked in. I try not to prowl the site for too long at a time, as I tend to get obsessive about stuff. I'm checking in for a while for a little solidarity though . My symptoms have been really bad lately. DP/DR and weird perceptual glitches I don't think there is a name for... and of course the visuals (which don't really bother me anymore). I'm increasing my Lexapro dose (which is a constant balancing act for me) in hopes of feeling better... it's a slippery slope though... too much and the brain fog gets really bad. Anyway, just having a hard time lately. Thanks for reading, my friends. I hope all of you are well, and to those of you that have this thing really bad, I feel your pain. It's a hard thing to live with, and it's good to know we aren't alone in this. Stay strong. WW

Bump. No one has any input on this? I also notice my DP/DR symptoms are worse after I eat. Anyone else experience this?

Merkan- So the positive effects of Keppra have stayed even when you quit taking it? Are you still on it? I have to get my thyroid checked soon anyway, so I thought I'd broach the subject of a script of Keppra with my doc while I'm there.

Yeah, getting it may be an issue, although my GP is basically a doc-in-the-box and doesn't really remember me or my situation most of the times I go in there. Maybe that will work in my favor... maybe not. I've had HPPD for 6-8 years, can't remember exactly. The DP/DR stuff is a fairly new development, only in the last year or two. I think a bout of panic attacks I had might have triggered it. The HPPD I can handle, but the depersonalization is hard. I just wondered if Keppra was something I could try for a while and get off of and would have lasting positive effects (I think I remember reading that here) or if it was something I'd have to stay on. If it has made anyone worse is also a concern. I"m very sensitive to anything I put into my body, like most people with these issues, and I don't want to take anything that will eliminate the possibility of me being able to support myself. As far as the klonopin goes I can't really function without it, and I take anywhere from .25 to .75 mg daily, so as I said a pretty small dose. Klonopin and Lexapro seem to be the two meds I need to hold a job and function in the world, and I'm OK with that. I just don't want to bother with Keppra if it's something I will have to take indefinetly.

Sorry to jack the thread, but I didn't want to start an almost identical one while this one was still active. My DP/DR symptoms are the worst they've ever been... so bad so I've had to dip into my Xanax stash (which I normally only take for panic attacks) to make due. I'm really scared I won't get any better, and have considered giving Keppra a try as well. I don't know if my GP will be onboard though, and my "neurologist" who was a dismissive flake when I went in for my my blood work/ MRI /EEG a few months ago had never even heard of HPPD. My main question is: is this something I'll have to stay on indefinetly or will I be able to take it for a few months and get off of it? I really don't want to add another med to my roster (currently only on a small dose of Lexapro and Klonopin and some multivitamins), but I don't know what else to do. Living this way is hell. I don't mind the visual symptoms but the brain fog and DP/DR stuff is way too intense. Any input would be appreciated. Also: has anyone gotten worse from taking this drug? Thanks, Seth

Anyone notice a pattern as to when your HPPD and or DP/DR symptoms become worse? For me it seems to be around 6-9pm. For some reason these are the worst hours for me. I'm just trying to find out if anyone else sees a pattern. One thing that is different during that time is that it is usually the busiest time for me at work and it's after I eat a big meal... around that time I usually pop a .25 of klonopin and once it "runs it's course" an hour or so later I feel less derealized and less brain fog. I'm selecting "mid-day" as my choice as I'm a second shifter and usually wake up around noon. If you select other please explain the circumstances. Thanks for participating!

I have thought about that. I think it's kind of a trade off. If I take the klonopin I'm less anxious so the fog isn't as bad. Then again the klonopin can bring it's own set of problems. To be fair I'm on a very low dose of klonopin. I take .25 mg at a time. Usually 2 to 4 times a day depending on the day, one dose of those is for sleep. I will play around with it and see if it improves at all. Thanks for the input bomber.

Thanks for your reply father, I'm glad to see you are open to the fact that the Love comes in many names and faces. I hope someday that Love envelopes me so much that there will be no one left over with HPPD. Only the Love. I hope we can dialog in the future, feel free to send me a PM anytime. WW

Like Jay said, it's a risk. I think if you're not having anxiety symptoms along with HPPD don't bother with klonopin. If you are though, I don't think a trial run with Klonopin is going to hurt anything. From what I've read it's a good thing on the onset of HPPD symptoms and could alleviate or even get rid of them. I've been on Klonopin for years on and off and my dose has not increased (.25 mg at a time, .5mg a day in general) and I find I need it to function at work, especially when the DP/DR symptoms get really bad. When you start taking more and more to mask anxiety and "get rid of" symptoms temporarily is where you run into a problem. Klonopin is the least addictive of all benzos (not to say it isn't though). Definitely stay away from valium (outdated and the reason for the term "benzodiazapine withdrawal syndrome") and Xanax, unless you're having panic attacks. These are meant to be used for 2 weeks or less, although most doctors don't bother with that. Klonopin is meant for long-term treatment. Can it be addictive? Sure. But it's a lot better than other options in benzos. Try it for a while and see if it helps while you settle into your new job. Then wean yourself off. See how it goes without it. It's better to not take it if you can get by without it, as previously stated. Light exercise, sunshine, vitamins, talk therapy (with a non-judgmental and open minded therapist) and meditation are also very good. I have also found L-Theanine, especially at night if you have sleep issues, to be very helpful. I'm a tea drinker as well, and Matcha (Japanese powdered green tea) has had some effect on brain fog symptoms for me (and is also loaded with Theanine). Be careful with it if you have a caffeine sensitivity though, as stimulants can exacerbate symptoms of HPPD. Hope any of this is helpful. Hang in there.

Very cool story! I have had a similar experience with my HPPD pushing me in a "spiritual" direction as well. I became interested in Shin Buddhism, which is very similar to Christianity at it's most subtle levels. I went to Chicago a few times to a temple there (a 2 hour drive) and soon realized a more local form of Buddhism might work out better. I started attending meditation groups around my town out of desperation and met a Buddhist monk (two actually) that became my primary teacher. I learned a great deal from him about how my own mind creates most of my suffering. I also had several Zen type awakening experiences (to the nature of Consciousness) while in his presence, and eventually moved in (almost by accident) with a guy who ran a meditation center out of his house. The monk stayed there for a couple of months out of the year giving me some very unique and cool experiences with him. I eventually became a Buddhist, taking lay ordination from another Zen monk who ran a temple nearby and was the brother monk of my main teacher. I received my Buddhist name from him and he became my Dharma teacher. I also seriously considered becoming a novice monk for a while, and traveling with my teacher. Then I met a girl.... that's another story....lol. I was good for a while. Then everything fell apart again. Re-cycled through the "I'm permanently F-ed up" crap again, complete with panic attacks, worsening symptoms, ect. I delved back into "spiritual" things, this time into Advaita Vedanta (and corresponded with a "Guru" of sorts to help me verify the awakening experiences I had and how to integrate them), and Shin Buddhism, coming full circle in my spiritual path but this time with the realization of the need for Compassion and Forgiveness in my own life and in my own experience. Wisdom without compassion is not real wisdom. Each brings the other about. I had become a very hard-hearted and angry person. And the same force I called out to in the depths of my despair pulled me through all of this. Not that it caused me to suffer- I did that myself- it transformed the scars of that suffering into a deepening of my humanity and a way to understand others. I realize now that from that first calling all the way to my kensho (awakening) experiences, back to intense suffering, and out again- I was "grasped, never to be abandoned" by this compassionate, salvific force. Whether you want to call that Jesus or Amida Buddha it really doesn't matter to me. Long story shorter- HPPD has brought me to a depth of compassion with other human beings that I don't think anything else could. Not "being nice to people", but real understanding of suffering and a shared connection and outflowing of goodwill towards others. I think this is really the end of it. What else in life could mean more than to have that connection with another human being? I find your story to be very inspiring, not because you "found Jesus", but because you found yourself... and what is important to you in your life. And you found it through HPPD.