onedayillsailagain

Chris: I see, I understand why you're moving on to other agents. I'd imagine Sinemet is easier to get prescribed, as L-dopa itself is OTC. Acetazolamide sounds interesting, as it's also used for epilepsy.. Also sounds like a long shot though, but then again I think keeping an open mind with experimentation is key to finding something that helps you, so good going there. As for the EEG: good thing I shaved my head last month. Visual: I read a qEEG is more precise, and that the "mini-seizures" going on would be easier to find. Any comments on that?

No, not at all. Here's the wiki.

Visual: toxic encephalopathy sure sounds more convincing than HPPD. Is this diagnosed by a neurologist through the EEG testing? My main worry is that if my EEG shows no abnormalities, it would only make it even harder to convince the doctors. 415_STYLEE: Years? Wow.. sounds depressing to be honest. Yep, persistance is key here I suppose. I'm not sure, but I think the institute I am seeing next also has a neurologist on staff, so perhaps that will make things easier. Once again, I'll know more in a few days.. I'll report back by then. I just read up on your post, that's great! Happy it works so well for you! When did you start noticing the positive changes? In a matter of days, or weeks? Hope they keep accumulating for you

Thanks for sharing, sorry to hear it doesn't do the job for you. I can see why you advized not to be too hopeful, I too would be disappointed if it doesn't work after a month. However, some people don't notice any benefits up till a year of use. And yeah I guess it sure beats sliding through a giant machine. I almost forgot to press "post", I got sidetracked EEG helicopter control and the like. Back on-topic: seeing as Keppra has anxiety listed as a potential side-effect, I wondered what I could add for anxiolysis. There aren't many anxiolytics which don't interact with anti-convulsants. A few ponders later, I remembered a novel Russian anxiolytic I was once interested in: Tenoten, which has proved not to interact with anti-convulsants in a study, and it's actually used for epileptic patients with anxiety. I have ordered some, and will start a topic soon with information, experience, etc. One person I correspond with on another forum has used it, and it seems to work very well for DP/DR and anxiety. Albeit not having HPPD, this guy also has his share of polydrug use, which he says contributed/caused his cognitive issues. So seeing as that is all similar ground, I'm going to give it a shot. Chris, any ideas on what you're gonna try next?

Hehe my doctor wasn't particularly fond of that decision either. Also, do some intensive research on dosing. Sublingual doses equate to way higher bloodplasma levels than oral, and that might cause a cheese-reaction with wrong calculation. Personally, the whole remembering what you can't eat thing, just doesn't work when your cognition is muck. That's also part of the reason why I discontinued. Allthough there is a balance between MAO-B and MAO-A inhibition, dosage wise, I just hate to screw around with it. I can't recall that well what it did for me. I didn't take it for more than a few days. I was in a particularly anxious phase at the time, and I just couldn't stand the constent "Maybe the amphetamine metabolites will throw me into a psychosis (I've had an amphetamine psychosis once before, worst experience of my life), or perhaps I'll eat some cheese and die" thoughts. However, after the first few days that somewhat subsided, and I remember sitting on the couch and being quite content with things. And somehow, I was able to focus more on playing guitar. Less derealization I suppose. I was more absorbed in what I was doing, came up with some random new tune, it flowed better, etc. It did nothing for the visual aspects though. If you are interested in Selegiline, there is a newer (better) version. Rasagiline does not metabolize into either enantiomers of Amphetamine, and poses more neuroprotective potential. Sadly it is also more expensive, about 150% of Selegiline's (Jumex) price. Partly the reason why I never gave it a shot. Nuvigil has been reported to exhibit more anxiogenesis than Modafinil. Maybe one of these days I'll try Modafinil+Phenibut combo, see what that does. Armodafinil has been reported to be slightly "cleaner". Either way, if your anxiety-prone, you're gonna notice. I do remember just going through Khan Academy Math in light speed, and I felt great about it. Also, when I'm feeling particularly spaced out, or my mind is stuck in gears, low-dose Phenibut does allow me to do a task that might otherwise be a mission. Anyways, trying to stay on-topic here: in your off-time, do some research on nootropics, see what appeals to you. Depending on the severity of you issues, some might help with the lethargic headspace. *cranks the skull* Sulbutiamine is one I haven't tried myself, but I believe it is good as a shortterm treatment for lethargy. Good luck

bpl: I'll do a google for it, sounds good Actually, my first Kava was Kona Kava. Not very potent. I read it was the worst Kava available right after ordering it >.< But it did the trick. Also, Dutch regulations on Kava... So much irony there. I have to order abroad to get the stuff, and recent finances haven't been in my favor. Limits my choice as well, as many companies don't ship to the Netherlands. Let me have a glance at Amazon's international regulations. cs1234: I used it almost everyday for a month, maybe more. But I ran out, so yeah. By the way, Erowid has some good reports on Kava. There's also plenty of Kava communities online. Hmm all this kava talk makes me feel like having a shell. I'm gonna order some.

Hmm it depends I guess. Just spaced-out in a different way. Haven't used it in a while so I can't really say. One thing I did notice, is that Selegiline somehow made my guitarplaying better. But that's a long shot. Besides, Selegiline has Amphetamine metabolites, one of the reasons I quit using it.

Series: The Pretender (a lot of episodes there) Terra Nova (1 season, but pretty good) House M.D. (if you haven't seen that already) Lie To Me (also got cancelled, but what the hey) The Mentalist (still active) Californication (keeps you busy) Movies: Seven Years In Tibet Kundun Charlie Bartlett Detachment Fear and Loathing in Las Vegas Ferris Bueller Good WIll Hunting Into The Wild (exclamation mark) Limitless Robinson Crusoe The Descendants The Wackness Water For Elephants White Squall (one of my personal favorites) Wild Target Y tú mama tambien I had a lot more, but I forgot them, or deleted them. Just scavenge IMDB and Moviefone, or whatever website, and check the toprated list etc. Also, when you like a serie, look it up on IMDB, and at the bottom there's some similar stuff suggested. Should keep you busy for a while.

Thanks for the replies, quite helpful ideas there. Chris, as far as I know, there aren't any doctors in the Netherlands that are experienced with HPPD. I'll check some Dutch psychonaut forums however. Money is not an issue, I was even offered a ticket to Boston to see if I could meet Dr. Abraham. But I rather keep that as a last resort, and try less radical means first. I'm well aware there's a chance that Keppra might not work at all, I just rather not think of that. I mean, aside from Keppra, what else is there really? Lamictal, Sinemet, and Klonopin? Perhaps Flunarizine? I rather stay clear of Klonopin, with all the cognitive side effects. Lamictal doesn't sound to welcoming either. I have also read a great number of reports of people for who Keppra didn't work, or the side-effects were too severe. But the study does indicate 85% of people benefit from it, which are good odds. Ludwig, unfortunately all medical files in this country are interlinked on some massive filing system. I could go to a dermatologist, and they could see I had the sniffles when I was 3 for example. I suppose my best bet is to wait until the neurological testing, and ask for an EEG. Damn that looks creepy though. Also, there is a slight chance they actually know what HPPD is. Guess I'll just have to wait and see, and go from there. Perhaps they're already planning to do an EEG, who knows. Would you guys mind sharing your experience with Keppra?

If only I had the chance to read that when I was younger. From the description it seems like it's a good book. Especially how he says that the youth is told that drugs are bad, but never really believe it because they are told too little. When I asked my parents why drugs are bad, they told me: "just, because, it's unhealthy". Yeah well so is fastfood, that never killed me! Ahh the invincible mindset of a teenager. What also aided was that I was told pot would cause braindamage. Come on, seriously? WIth misinformation, distrust comes. Kind of like the boy who cried wolf. "Weed is dangerous!" And then when it comes down to hard drugs, you just think: Well, they where full of BS when it came down to weed, surely harddrugs aren't as dangerous as they tell me. If I ever get over this HPPD, and deem it responsible to have children, I'd definitely find it a good investment to buy this book.

I'm fresh out of Kava But indeed it's a harmless anxiolytic. I've even read anecdotal reports of people using it to attain clarity in meditation. I find at times it helps me find contentment. And there's all kind of varieties, which keeps it interesting. Kava honey is amazing! Kava candy is useful for on the road. I use it when I ride with public transport, to take the edge off of the anxiety. There's a spray called 1hourbreak which is also useful, I got a free sample from them. There's instant Kava-Coco drink, and other flavors. Personally I like to take 2-3 glasses of the traditional drink, and 2 dabs of Kava Honey. Definitely better than weed and alcohol in my opinion. Doesn't come with the fogginess those do. Also some evidence suggests it upregulates some of your GABA receptors, in other words, making it easier for you to relax, even when not using it. And yes indeed, doing alot can make you feel a bit spacey, but it does no harm. It's also great for sleep. I love the stuff

In my experience (6 week trial) Prozac didn't help the slightest bit. Was like taking a sugar pill. After reading a bunch of convincing studies that Prozac is basically a placebo pill, I decided to discontinue. I did have slight improvements (mainly with anxiety) in when using Tianeptine. It was however not even close to a full recovery, and I wanted to try a new agent, so I discontinued out of precaution for interactions. Tianeptine is basically the opposite of Prozac, it's an SSRE (Selective Serotonin Reuptake Enhancer). Also it is reported stop and possibly reverse neurodegeneration caused by stress and anxiety, in other words, slightly Nootropic. If you are going down the Anti-Depressant lane, it's best to do your own research. Most first-line AD's are generally considered useless. http://www.biopsychiatry.com/ < Has extensive research on most anti-depressants. I find it quite resourceful. Nonetheless I hope it works for you

Modafinil helps me with lethargy, but I rarely use it as it makes me anxious sometimes. Also seems to make math easier. It helps me with motivation. Remember, always do your own pharmacological research and make choices based on your own findings However, discuss it with your doctor first. IME they rarely like it when you start using novel medications unknown to them.

Hello everyone. For the past 3 months I've been trying to get my hands on Keppra. Amazing how I could walk across the street and score some heroïn (not that I ever would), yet getting a medication seems almost impossible. I just came back from my doctor whom I showed the DSM pages that cover HPPD, and the study on the efficacy of Levitiracetam (Keppra) on HPPD. Neither my doctor, nor my psychiatrist, deem themselves competent enough to deal with HPPD, let alone prescribe me Keppra. Subsequently I have an appointment with a "addiction doctor", who "might have more experience in the area". I can't stop thinking: "This summer is going to pass without me ever being able to enjoy a single ray of sunshine". I was told the "addiction doctor" will perform a series of neuropsychological testing. Not knowing exactly what that entails, I presume it consists of CAT scans and the like. Judging from my experience with professionals, merely calling them can take up to a week to come through. Between calling, appointments, and tests, I can almost certainly estimate that this obsolete procedure will take several months. This I conveyed to my doctor, who would consult with my psychiatrist, whom I will see next week. And thus the circle completes itself once more. My doctor also told me that Keppra has to be prescribed by a Neurologist. And there comes the gap: HPPD cannot be diagnosed by a Neurologist or a doctor, and Keppra can't (?) be prescribed by a psychiatrist or a doctor. Have any of you been caught up in such a fruitless pursuit as well? If so, how did you get out of it? Is it merely dependant on whether or not you'll find someone for whom helping others precedes the fear of losing their job? I really don't see why acquiring a simple medicine has to be so tiring and demoralizing. Perhaps I'm missing something. I've contemplated ordering online, but taken into account the various risks involved, that seems like a bad idea. Ironically, I no longer have the cognitive skill to do a crash course in chemistry to synthesize the stuff myself. I'd be grateful for any suggestions which could facilitate this tedious progress. Feel free to PM me if necessary. I hope to be able to share my experience with Keppra here in the near future. Many thanks in advance!

Wake up Eat Shower etc Watch tv series Eat Sleep ^^^ been doing that for the past year or so. I really tried to keep life as normal as possible, but it wouldn't take hold. In the beginning I went running a lot, ate healthy. Hell I even tried going to school. Nothing ameliorated my situation so I slowly degraded to this rockbodem lifestyle. Between waiting for doctor appointments, getting referred to another incompetent person, and the occasional "fine, I'll go see a friend", watching series just kind of numbs my brain far enough so it all seems bearable. Still awful, but bearable. I've been trying for months now to get ahold of Keppra, in my eyes my only possibility to get out of this mess. In the meantime I try endure the best I can. What a vegetable I have become.

Hey there! No, currently I am located in the Netherlands. Planning to leave as soon as I fix this though

Hey bpl, I have the same issue. Ever since HPPD my articulation is freaking horrible! I used to give 15 minute speaches 3 times a day before an audience of up to 30 people, and once a week before 200 people without any problems. I was always loud and clear, never even had the slightest anxiety whilst doing it. Nowadays when I buy tobacco, I ask for a "plack of smigarettes". It's like my mouth and tongue feel different, and my control of it is diminished. Everything is slurred. Eventually I gave up trying to sound like I used to, and then I learned how to talk with my "new voice". Sure, I sound strange, but I'm audible. I think it's also anxiety-related though. Personally I hope this will ameliorate itself with Keppra, if I ever get the stuff. Also, seeing as forming thought becomes a strange task with HPPD, perhaps it is because of the lack of clarity with your "thought-voice". Visualizing what you are going to do and say becomes difficult and blurred, so the actual action inherits those qualities. For that same reason, I frequently spill a drink 'cause I take to big of a gulp. Getting off-topic though. Anecdotal evidence suggests Wellbutrin could help with speech. Good luck with it

I use this stuff once a week. I get some good relief from it. The visuals don't decrease, in fact at times they might even increase while on it. But it's like I take less notice of it. EIther way, DP and DR decreases a good bit with it, and anxiety definitely goes down as well. It dims down the chaos in my head. For one day a week, I can feel like I'm not just a bundle of randomnly firing neurons. Kind of like my day off from HPPD. It's good in social situations as well. And some more positive effects, but I don't want to go advertising this stuff, as it can be dangerous with misuse. If you do use it, us it wisely and keep disciplined with it. I've read the withdrawals from daily use are hell.

Hi everyone! First off, I'm glad to be accepted here. I was going to post a couple of weeks ago. But I got caught in watching all episodes of a tv-show back to back trying to push out how awful I feel. And then I just don't do anything but that. Anyways, here I am! I could give you the long story, but I think it's all pretty similar to your experiences. Over a year ago I had a single experience with XTC, and after that my life was never the same. I was 17 at the time. First thing I noticed was a different feeling in my head. Found it very strange, but presumed it would pass in time. Thought process had changed immensely, memory became deficited, attention even worse. Overall cognitive vigilance which I held so dearly, I had lost, along with my self-confidence. Anxiety set in, and so the journey began in finding out what the hell happened to me. Months passed, different theories, brain-damage etc. etc. Sure you guys all had the same phase. Tried nootropics, supplements, healthy living, the whole 9-yards. Nothing seemed to ameliorate my affliction. As time passed, the initial anxiety smoothed out a bit, not much, but enough to start noticing the visual effects. Now they where there from the start, but the cognitive aspect was more prominently present for me. I had this "thoughts can influence your perception of reality" idea, and presumed the changes in thought caused this diminished perception. Then after more searches I read about HPPD. That night I was lying on the couch, paying attention to the ceiling, and hell indeed I had HPPD! Flickering lights swirling and crawling around the ceiling where the first of many symptoms I noticed. I started noticing more: objects would disappear sometimes, nothing would stand still, it all swayed and morphed, colors would changes (hues), visual snow was pretty evident as well, depth perception was off, sometimes clouds and stripes of shadow would appear, float, and disappear whilst changing color. Bright dots would appear and connect lines between them. I might be missing some things here, but you get the picture. I read up more on HPPD, and got pretty demoralized when I read of the rarity of the matter, and the little information available on the subject. And that there was no established cure. I gave up for a time, thought I had screwed my brain for good now, that I would never return back to reality. My memory recall was altered: all bad memories long forgotten came back to me, all good ones faded drastically and the sensual recall of the activity was nowhere to be found. Visual recall was so vague. My fondest memories were reduced to a mere intellectual "knowing" that it had happened. Often I found my only motivation to persist, to lie in this "knowing" that I had once been who I was, and that I had been content and happy for long periods of my life. That, and humor. Anyway I started trying anti-depressants, some from friends, some ordered online. Fluoxetine, Tianeptine, Selegiline, nothing really helped. Only thing I find so far is that Modafinil makes me better at math, but not nearly the same level as I used to be. Somewhere inbetween all that I also tried Tabernanthe Iboga. That's a story for another day. Finally decided to go to the doctor, which referred me to a psychiatrist. After finding out about the 3 month waiting list, I tore the refferal letter to pieces, and forgot about it. Two months later I decided I had done everything I could possibly do to help myself in my knowledge, and that I had to make an appointment. In the meantime I had read about Levetiractam/Keppra, and found some inspiring stories. I went to the doctor, said I couldn't live like this any longer and needed help a.s.a.p. Couple of days later I was at the crisis service where they had never heard of HPPD. Great. I'm sure you all know how hard it is to describe HPPD to someone, let alone have them understand what you are going through. Now I got referred to the addiction clinic, on the presumption they would know more about drug related disorders. And behold, I must wait another 4 weeks before being able to talk to them, let alone actually persuade them into prescribing me Keppra. What a long and tedious trail of scared self-proclaimed professionals one must travel to get the help they need. Well that was pretty lengthly after all, my apologies. It doesn't describe my entire experience with HPPD, yet it paints a basic picture. Anyhow, this is where I stand now. Once more I have to wait. In the meantime I hope to be able to contribute to this forum. I have found it a great source of information. I hope to be able to add some experience with Keppra in the future, for those who could use a succes story (which I am ofcourse hoping, my story shall be). Enough rambling Thanks to r.trudeau and HBB for helping me out!