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The quest to acquire Keppra


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Why don't you consult with Dr Abraham?  If you flew to Boston, you could do the drug trial as well (if he is still doing it).  But most important is his diagnosis ... then you flag under their noses that he has a Nobel Prize (never mind it is a peace prize, not in medicine).  Another member here consulted with him by phone (from UK).

 

Once someone of "distinction" makes the diagnosis, then there is more cooperation.  He can suggest meds to try and your doctor can work with the referral.

 

But in the end, aside from trying Klonopin, Keppra, and/or Sinemet, what will they do for you?

 

Since they want to rule out other possibilities, what are these other possibilities?  Possible diagnosis?  And, in the end, treatment?  Is it possible to get a diagnosis that allows for a broader range of meds to try?

 

 

As far as your own bio-feedback/eeg thingy, the voltage/ampage you report is harmless.  Don't see any coil in your picture that might be used to boost voltage.  Case in point, take a 9-volt battery and stick it anywhere on your skin (hands, face or foreskin (oops) forehead) ... at best (worst) you'll only get an irritating little tingle.  Anyway, its a fun project and I'd be interested if you can actually pick up brainwaves.  If so, I got an old oscilloscope I'll pull out and play with....

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I'd rather keep flying to Boston as a last resort. Tolcapone I'd rather not take for various reasons; first I wouldn't know whether I have the correct polymorphism, second it can be hepatoxic and third it's unsustainable.

 

I don't know really what other possibilities to be honest.. My interpretation is that they haven't the first clue what HPPD is, and they'd rather have it be something else so they can "work with it" (read: make money). In any case, they want to rule out all known psychiatric and neurological disorders before concluding that maybe possibly and differentially there could be a chance that I have HPPD.

But there's good news. I just came off the phone with aforementioned specialist. Aside from possibly being irritated by my constant interruptions, he seemed to be very willing to help, and I have to call back tonight to make an appointment. This will be in 2 weeks.

From our brief discussion I understood treatment options included SSRI's (told him I wanted to skip that, seemed ok with it), Clonidine, Clonazepam, Lamotrigine, and something else I forgot. When he said "anti-epileptics", I jumped in with "levetiracetam?!", and he said that they used Lamotrigine. Wish I had inquired further about the possibility of implementing Keppra in my treatment, but I felt perhaps it would be best to discuss that in person. From what I can collect, he'd probably be willing to give it a try, but I won't get my hopes up. Just seems to me that someone so experienced with HPPD would be easier to convince to try Keppra, than any other doctor. I'll be sure to bring the relevant studies and testimonials along. All I need to do now is get a referral from the addiction clinic, and charge some money to my public transport card.

 

And my Frankenstein project isn't really biofeedback. It's tDCS. But yeah same neurological niché I suppose. It isn't meant for brainwave detection/entrainment. It is solely for altering the excitability of different areas in a (semi)focal manner. So far effects are above what I had anticipated, and I'm pleased to experience this.

As stated before, I'll be putting off this project for the time being. Perhaps I'll use it as an adjunct to Keppra, be it that I get it. Seems to be very transient.. Upon further reading I found that for depression the standard treatment is twice daily with 2mA intensity (higher than what I've been able to achieve so far). Thus perhaps with that regime, effects will be longer lasting. Studies indicate that with frequent sessions,  duration of effect is extended after each session (as if the brain is primed to receive the effects). Note: not in an exponential way. U-curvature seems to be a prominent factor in science. As with many things, too much of a good thing ain't good. Anecdotally, overstimulation causes adverse effects (feeling retarded). However that was a guy who did 5 sessions a day for like a year.

 

My next trial will probably include cathodal stimulate of the visual cortex, and perhaps effecting the sensorimotor cortex (need further referance for stimulation type), and also ventromedial PFC stimulation (again, need further research regarding + or - stimulation favorability). Any ideas are welcome, I'd be happy to test other people's theories :) In the meantime I'll entertain myself with researching to what extent calcium transmission is involved (think flunarizine, clonidine, etc. effects). Visual if you'd like a copy of my (incomplete) research, send me a message.

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Just a quick update:
I received the Tenoten today. Took two initally, felt suuuuuper tired. So I guess sedatives are inherently anxiolytic, but a clear mind was largely absent.
However I did notice less paranoia when having dinner in a jam packed restaurant, which was very nice. However I really just wanted to lay down on the couch I was sitting on, and it took me a hell of a lot of willpower to stay upright (2 hours of all-you-can-eat).
I just took one an hour ago, any feeling less overwhelmed by the effects. Just tired really. Which is nice, cause I need to sleep early tonight.
So if this stuff doesn't help clearing my mind, at least it could help with sleep.
 

One of the people I initially discussed Tenoten with reports having some visual quirks from it, but he said it could just as well be the other supplement he started taking. Interestingly, I don't think my visuals can get much worse than this, so I'm not all that afraid of that. Rather have more visuals with a sharper mind.
I did notice some intermittent broadening of my perceptions.. how to put it. You know when you feel you don't really take in everything around you at once?
Well that was a bit less with Tenoten, but like I said, it fluctuated. Anyway too early to really appoint any concrete effects, I'll take it for the following week and see what happens.

I've given tDCS a rest (allthough I made several alterations and have fooled around a bit.. but I will try not to touch it) for the time being, so as to asses the effects of Tenoten. For those of you interested, the Foc.Us is available for pre-order. I still need to scavenge some money together for it, but I'll buy it soon.
Cheers.

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Haha yes indeed, but it was a couple of hours before dinner, and maybe half an hour after Tenoten, that I started getting so tired.
Hmm I did have some strange dreams, but that could've been unrelated. I'll spare the details, but it involved being tortured in a Russian tower?

Weird, disgusting and vivid. But I slept pretty good nonetheless.

 

Haven't done any double dosing today, only single doses. Honestly I haven't slep very long (perhaps 5 hours), so being tired would be attributed to that.
Not much anxiety, just extremely bored.

 

Nothing else going on really, besides having a friend over today. Hopefully he'll help me break out of this routine of looking at the calender most of the day.
Weather hasn't been to forgiving lately either.. Had to cancel a trip to Belgium.

At least my cabin fever isn't totally self-induced! Anyway my next update will be next week, have some appointments scattered out over that week.

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A little update:
I quit taking Tenoten, because I've been using all kinds of substances lately, and it would be unfair to attribute any effects to Tenoten.
Anyway I've thrown away said substances, because they were making things worse. 

Now I'll abstain for a week at least, to return to baseline. By that time there's a good chance I'll have a prescription for Keppra, so who knows I might never use Tenoten again.

Recently I read that Bacopa Monnieri can potentiate Calcium Channel Blockers.. I wonder if Keppra falls under those, with its presynaptic calcium transmission inhibition (IIRC).. In any case I'd like to know whether it is contraindicated with Keppra, because it look like a very decent nootropic anxiolytic adjunct, with sufficient studies supporting the claimed effects.

 

No updates on the tDCS.. really dropped that for the time being. Besides, my new component hasn't arrived yet.

 

Went to the shrink today with a really bad hangover. I could barely hold a conversation with the guy. I think it was the weed I smoked the previous night (I know, unwise) which caused my visuals and anxiety to go through the roof. I even had phosphenes ever other second, covering my entire vision. Normally it's very light (mellow) and localized. Suffice to say I can't remember a single thing we discussed, but I believe we came to the conclusion that we're both very stubborn people, and that we'll make one more appointment after which we'll cease seeing eachother. (hallelujah)

 

Anyway, when I came home, I was still feeling very anxious, and wondered whether Melatonin would help me fall asleep. I took 5mg (instead of the 0.3mg I usually take, if any) after reading some studies on its anxiolytic effect. Worked/works like a charm, albeit tired, I have calmed down and no longer feel like I'm on the verge of breaking into a psychosis. I've posted another very promising study on Melatonin in the "Research Articles" section, for those of you interested (I recommend you read it).

 

Lastly, before my meeting with the shrink, I passed by the doctor, and he agreed to give me a referral to the HPPD specialist. Free treatment, hurrah.


Finally things seem to be getting into gear, all I gotta do now is wait. But the waiting itself is a lot less tedious, because hey, the guy's a HPPD specialist, not some unknowing doctor who has no clue what I'm talking about.

 

Other than that, the Melatonin made me quite tired, so I'm gonna lay back and watch a movie, drift off etc. I'll update on Wednesday, if my appointment with the addiction clinic yields anything significant.

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Fascinating thread. Perhaps you already mentioned, but since you're willing to conduct your own experiments, why didn't you order some Keppra online? Because you want to be supervised by a professional?

Also - what do you do for work/study/whatever blah blah..? Did you start enquiries into neuroscience after HPPD came on or have you studied in this area 'formally' (whatever that means)? I assume you were probably into reading about drugs + their effects before/when you started taking them..

I ask just because it's lovely to read your findings (as with many other members), you clearly know your shit.. and I'm curious as to how you came to the shit, ja?

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Thanks Syntheso!


I have considered that many times; ordering Keppra online. However I had a few reasons not to do so: If the Keppra had been fake, and it didn't work, I would've never known whether it was Keppra that didn't work for me, or the lack of Keppra. And seeing the many good experiences with Keppra, I wanted to be absolutely certain I was getting the real stuff, so as to ascertain whether it worked for me or not. Also considering it can takes months before Keppra works with some people, so I would have to run 2 trials if the first hadn't worked. And yeah, getting supervised is just a bonus I suppose.. Safety isn't really the priority in this dilemma, effectiveness and speed are (in that order).

 

Regarding the neuroscience.. Nope, your assumption is incorrect. My former profession was sailing, as I have the salt in my blood. Thus my screenname wasn't meant in any metaphorical way ;) I didn't know a single thing about the brain before acquiring HPPD. Didn't even know what Serotonin was, aside from knowing it was somehow involved with XTC.


However one of my first thoughts after the catalyst trip, was: "This has got to be something neurological.. sh*t, I'm in for a long ride."
I just became determined to recover from this, and have spent most of previous year glued to my laptop screening through endless texts of neurology and pharmacology, hoping to find some answers. Subsequently I became very interested, because let's face it: neurology is awesome. Also very complex at times, which can make it a lengthy journey.

Sadly, my cognition does not permit me to study and comprehend at the level I'm used to, otherwise I would definitely have picked up on my biology and started "formally" studying neurology. Nonetheless I like to think I have some logical reasoning left in me, and just kind of gathered my knowledge from various sources. Alas, this also means it could all be wishful conjecture. Nonetheless I hope to regain my cognition, and consider studying Neurology if I can handle it, concurrently getting my Captain's license. It's an ironic paradox: I used to be able to do anything, but I didn't want to. Now it's vice versa. But I would very much like to devote a part of my life to studying HPPD, if I ever can deem myself capable.. Wouldn't want anyone else to have to through all this.

I just came back from the HPPD specialist, who also checks this website from time to time. So in that case: Hello, thank you!
Won't go into too much detail, but I felt he was very understanding. We discussed Keppra, and it seems highly likely that I will be able to receive the treatment very soon. Just have to send him some info on Keppra, which I will do shortly.

I was very surprised, and satisfied, to hear that there was also a person using rTMS with marginal succes, and that he himself (specialist) was also looking into the matter. I say satisfied, because this means my research is actually based on logic. Huzzah! Lastly I was informed that there are also other medications available, should I not find amelioration in my initial treatment, and that we would do anything conceivably possible to better my situation. Suffice to say I'm very content and grateful. I kind of suck at judging the borders of confidentiality at the moment, so I'll leave it at that for now. Oh, and on my way back I got a 30 euro fine (freaking scanner thing doesn't show you whether you're checking in or out at the destination).

I'll know more by Monday. Aside from that.. not much too add really. Melatonin in large doses have definitely helped with sleep. Also with vision at times. Sadly not with cognition. I've experienced intermittent anxiolysis from it though. Also, someone gave me a strip of Oxazepam. I haven't used it yet, and don't really plan to unless necessary. I am tempted to try it though, and might do so tomorrow. It is a metabolite of Prazepam, which was too strong for my taste. So who knows, might do the trick. Lets see.. what else..

Ohh almost forgot: Also had some Sulbutiamine in the mail earlier this week. What can I say? Dosed 200mgs, with another 200mgs 2 hours later. No effects on visuals. I'd say subtle stimulation lacking anxiogenesis, which I can appreciate. Actually I managed to relax on the stuff, which tends to be a rare thing nowadays. A mood lift, not euphoric however. Very, very subtle, which is what I like about it. It could've just been the amazing sunshine outside, but usually I have trouble even enjoying that, and with Sulbutiamine I was more capable of immersing myself in experiencing the warmth and the silence. Cognitively.. mehh it's not like I tried some braingames or anything. I'd say best cognitive enhancement I've had so far are still Modafinil and tDCS.

Thursday I have an appointment with the shrink. I'm still thinking of a way to say "thanks for nothing" without conveying ingratitude. Hope to somehow tie an end to those meetings, which seemed to be the mutual goal of this appointment. Tomorrow I'll contact the addiction clinic to update them on my situation. I don't know whether I should sever my ties there yet, but I'll see. They were definitely kind people.

When I was a kid, my brother and I used to pretend that if you could hold your breath while driving through a tunnel, you could make a wish.
No matter how blue in the face we got, we'd never gasp for air untill there was sky above our heads. Hell, even in a traffic jam we'd usually hold out.
You can imagine the sufficating feelings build up with time. However, once I could see the light at the end of the tunnel, they would reduce in severity, and I would suddenly feel as if I could hold my breath for another minute if I had to.

I hate cliché's as much as the next person, but I make an exception in this case, considering the aforementioned memory. I guess the past few months in particular have been like that peak of sufficating feelings, right before turning the corner and seeing the light. It seemed to take forever (factually it took a year, which is close enough) Finally, now 'the end is in sight' (as the Dutch put it).

 

Seeing as I just drew the oldest analogy ever, I should probably call it quits for this post. I'll update with conclusive news if applicable.

EDIT: Wow.. this was an abnormally long post. My apologies.

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Thanks Syntheso!

I have considered that many times; ordering Keppra online. However I had a few reasons not to do so: If the Keppra had been fake, and it didn't work, I would've never known whether it was Keppra that didn't work for me, or the lack of Keppra. And seeing the many good experiences with Keppra, I wanted to be absolutely certain I was getting the real stuff, so as to ascertain whether it worked for me or not. Also considering it can takes months before Keppra works with some people, so I would have to run 2 trials if the first hadn't worked. And yeah, getting supervised is just a bonus I suppose.. Safety isn't really the priority in this dilemma, effectiveness and speed are (in that order).

 

Regarding the neuroscience.. Nope, your assumption is incorrect. My former profession was sailing, as I have the salt in my blood. Thus my screenname wasn't meant in any metaphorical way ;) I didn't know a single thing about the brain before acquiring HPPD. Didn't even know what Serotonin was, aside from knowing it was somehow involved with XTC.

However one of my first thoughts after the catalyst trip, was: "This has got to be something neurological.. sh*t, I'm in for a long ride."

I just became determined to recover from this, and have spent most of previous year glued to my laptop screening through endless texts of neurology and pharmacology, hoping to find some answers. Subsequently I became very interested, because let's face it: neurology is awesome. Also very complex at times, which can make it a lengthy journey.

Sadly, my cognition does not permit me to study and comprehend at the level I'm used to, otherwise I would definitely have picked up on my biology and started "formally" studying neurology. Nonetheless I like to think I have some logical reasoning left in me, and just kind of gathered my knowledge from various sources. Alas, this also means it could all be wishful conjecture. Nonetheless I hope to regain my cognition, and consider studying Neurology if I can handle it, concurrently getting my Captain's license. It's an ironic paradox: I used to be able to do anything, but I didn't want to. Now it's vice versa. But I would very much like to devote a part of my life to studying HPPD, if I ever can deem myself capable.. Wouldn't want anyone else to have to through all this.

I just came back from the HPPD specialist, who also checks this website from time to time. So in that case: Hello, thank you!

Won't go into too much detail, but I felt he was very understanding. We discussed Keppra, and it seems highly likely that I will be able to receive the treatment very soon. Just have to send him some info on Keppra, which I will do shortly.

I was very surprised, and satisfied, to hear that there was also a person using rTMS with marginal succes, and that he himself (specialist) was also looking into the matter. I say satisfied, because this means my research is actually based on logic. Huzzah! Lastly I was informed that there are also other medications available, should I not find amelioration in my initial treatment, and that we would do anything conceivably possible to better my situation. Suffice to say I'm very content and grateful. I kind of suck at judging the borders of confidentiality at the moment, so I'll leave it at that for now. Oh, and on my way back I got a 30 euro fine (freaking scanner thing doesn't show you whether you're checking in or out at the destination).

I'll know more by Monday. Aside from that.. not much too add really. Melatonin in large doses have definitely helped with sleep. Also with vision at times. Sadly not with cognition. I've experienced intermittent anxiolysis from it though. Also, someone gave me a strip of Oxazepam. I haven't used it yet, and don't really plan to unless necessary. I am tempted to try it though, and might do so tomorrow. It is a metabolite of Prazepam, which was too strong for my taste. So who knows, might do the trick. Lets see.. what else..

Ohh almost forgot: Also had some Sulbutiamine in the mail earlier this week. What can I say? Dosed 200mgs, with another 200mgs 2 hours later. No effects on visuals. I'd say subtle stimulation lacking anxiogenesis, which I can appreciate. Actually I managed to relax on the stuff, which tends to be a rare thing nowadays. A mood lift, not euphoric however. Very, very subtle, which is what I like about it. It could've just been the amazing sunshine outside, but usually I have trouble even enjoying that, and with Sulbutiamine I was more capable of immersing myself in experiencing the warmth and the silence. Cognitively.. mehh it's not like I tried some braingames or anything. I'd say best cognitive enhancement I've had so far are still Modafinil and tDCS.

Thursday I have an appointment with the shrink. I'm still thinking of a way to say "thanks for nothing" without conveying ingratitude. Hope to somehow tie an end to those meetings, which seemed to be the mutual goal of this appointment. Tomorrow I'll contact the addiction clinic to update them on my situation. I don't know whether I should sever my ties there yet, but I'll see. They were definitely kind people.

When I was a kid, my brother and I used to pretend that if you could hold your breath while driving through a tunnel, you could make a wish.

No matter how blue in the face we got, we'd never gasp for air untill there was sky above our heads. Hell, even in a traffic jam we'd usually hold out.

You can imagine the sufficating feelings build up with time. However, once I could see the light at the end of the tunnel, they would reduce in severity, and I would suddenly feel as if I could hold my breath for another minute if I had to.

I hate cliché's as much as the next person, but I make an exception in this case, considering the aforementioned memory. I guess the past few months in particular have been like that peak of sufficating feelings, right before turning the corner and seeing the light. It seemed to take forever (factually it took a year, which is close enough) Finally, now 'the end is in sight' (as the Dutch put it).

 

Seeing as I just drew the oldest analogy ever, I should probably call it quits for this post. I'll update with conclusive news if applicable.

EDIT: Wow.. this was an abnormally long post. My apologies.

No need to apologise for the long post.. whilst being concise is usually held highly in intellectual dialogue, thoroughness is necessary (if possible)!

Modafinil for me too, has been the first thing that has been able to kick my ass into gear and cognitively function remarkably more than usual (for fecking ages). But it doesn't quite cut it when anxiety comes into play (and only really helps my concentration/hypersomnia)... not quite all there though (still a bit spaced out)!

What's the deal with you and the addiction clinic? Are you suffering some sort of addiction? Or is it just that they're 'drug guys' and understand that niche of psychiatry better than a generic neurologic/psychiatrist?

I have my first psychiatry appt next week with drugs people and am really hopeful about it, the guy I have been talking to (another psychiatrist) has highly recommended the person I am going to see.. and they all seem to know about HPPD.. though from what I gather they seem to think the whole thing's largely to do with anxiety causing all these other symptoms and seem to be suggesting SSRI's, citalopram etc.. also Lyrica (I haven't really looked into).. I haven't read much about them but I am sceptical of their potential based on anecdotal reports here.. and I was on citaporam for 2-3 weeks and if anything didn't really affect me other than making me feel less anxious (but almost affecting a different sort of anxiety than the one I associate with HPPD, if that makes sense).. although, my lack of success with this could be because I wasn't on it for very long and apparently it lowers dopamine levels temporarily.. maybe you have to stick at it. Still not sure about the route though. From what I've read from people's experience with SSRI's.. and I think it's more than just an anxiety routed issue issue, not for me at least. I certainly perceive that anxiety can worsen the other symptoms, but I don't think it's solely an issue of anxiety.. for me anyway.. just based on that I generally don't feel anxious in myself (only very mildly, certainly compared to what other people have reported here).. yet my cognitive abilities are up the spout... I still speculate low dopamine (and possibly/probably seretonin levels). It is interesting that benzos really do seem to help my cognitive function... and have been known to really reduce my visual symptons when I took high doses with no tolerance (20mg of Lorazepam to be precise). 

Sinemet + Keppra is what I want to give a try. And perhaps a (apparently unique!) benzo like Tofisopam you mentioned.

Like you I have an assortment of different things that I try at different times, under a control to see what works best for me.

Also-sure this would have been asked before. A final point to my post and something I wonder about quite a bit... whilst some of these treatments we are looking into seem to be effective in the short term.. I haven't yet read research to suggest their long term effects (except for that the levdopa/Sinemet approach could higher the risk of parkinson's disease in the future, which already runs in my family, as it happen.. and I do seem to have restless legs syndrome...hmmm!).

What I mean is.. whilst certain meds/supps may seem to help things for the time being, I wonder if some in the long run actually make things worse and perhaps there is a sense in that we should hack it (as unbearable as it can get sometimes) and let our brains try and recover naturally. Otherwise it might be a case of having to stick with and alternate with meds long term to keep regulating and balancing different chemical levels in our brain.. do you know what I mean ? By more immediately + continuously altering chemicals in our brain, we might be interrupting natural gradual permeant reparation that the brain could independently achieve...  which in the long run might truly improve things more efficiently. I very much need to do stuff NOW in my life, so I feel if I waited years for everything to naturally go away it could waste a lot of valuable time in my younger life and so have a tendency to what to treat things immediately. But I wonder if that prolongs the condition in the long run, essentially forcing us to constantly need to control our brain chemically with medication.

Not sure if I'm making sense. 

Thoughts?

 

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Ghormeh: I know what treatments are offered. However, as stated before, I really don't know where the boundries of confidentiality lie, and would hate to overstep these. I'll discuss whether I can disclose these things upon next contact. Would hate to "advertize" here without permission, if you get my drift. Even though I really want to help you guys out. For now, all I'll say is that there are multiple options available already known to be effective. Again, Monday I'll ask whether it's ok to go into detail here. I'll also ask whether foreigners are accepted, something I forgot to ask yesterday. Alternatively, you could call them yourself, as most Dutchies speak English to some extent.


Syntheso: No worries, I'm glad to discuss other things as well.

Modafinil can have a light anxiogenic effect in some people, especially those already experiencing anxiety. This is why many people take a mild anxiolytic concurrently.


Nope, no addictions other than tobacco here. I was initially referred to them because they would have more knowledge about drugs. Which reminds me, let me call them in a minute. But anyway, they're just very friendly people. They don't .. well I don't know the English term, but in Dutch they call it "screwing ants". Ahh, "nitpicking" in English apparantly. So yeah, these people don't nitpick as much as the shrink, which is nice. Still wondering whether I should terminate actions with them, because I don't really have an addiction. I just prefer them over the shrink, who just throws cryptic riddles at me.


Personally I think SSRI's won't really help much. They did squat for me at least.. Hell I'm biased on that subject.. If you want SSRI's, consider Venlafaxine, which has been used in HPPD before. And yes, many SSRI's require 6 weeks incubation. Preferably just avoid them.

Regarding sustainability.. It's a tough one. Benzo's certainly are not, albeit having the ability to allow short-term relief. I didn't know that about Sinemet though.. interesting. But as with most things, there are more ways than one to skin a cat. Enhancing DA signalling can be done in a number of ways, so perhaps research a little more into safer ways of doing so. As far as I know, Keppra is the most sustainable treatment available, which is one of my main reasons of choice. 

The whole "brain healing itself thing" is a bit ambiguous. I strongly suggest you read this article, and then reasses that theory. Stress severely diminishes the brain's ability to heal, and strongly contributes to cognitive dysfunction. Let's face it, whilst you don't have anxiety in the severe forms others (including myself) here describe, you probably do experience this all as stressful. Glutaminergic transmission also plays a large role here. The novel anti-depressant GLYX-13 is a partial agonist at the NMDA receptor, exhibiting anxiolytic, anti-depressant and nootropic effects. But you'll read about that in the aforementioned article as well.

Personally I believe that unless *some* compotent is altered in the pathogenic circle of HPPD, the brain cannot begin to heal. This is presuming the HPPD is of the disabling flavor. Obviously for those with mild HPPD, chances are way better for natural healing. Let me rephrase what I think could happen: Keppra->Less symptoms->Less stress->Restoring of neurological homeostasis->Improved ability to relax and focus->Exercise these abilities->Greater ability to endogonously handle stress->Quit Keppra->Problem solved.
 It's basically a matter of striking the hammer while the iron is hot. Medication is just heating the iron.

However, this is a rough estimation subject to many factors. However the visual cortex might not be as actively involved in relaxation exercises as, say, the PFC. This raises questions to as whether any localized morphological changes could occur there. On the flipside, the same study that proposed disinhibition of the visual apparatus as a pathogenesis of HPPD, also reported that there was a widespread inhibition of cortical signalling upon eye closure, in HPPD patients. Now have a look at exhibit A (always wanted to say that):
brain_stress.jpg

 

Now aside from the fact that enhanced PFC DA signalling contributes to mitigating sensory gating deficits, there is also the above. If long term morphological changes were to be induced in the PFC et al by exercises, than route B could become the new (obviously preferred) route. I mean, with inhibition of the PFC, route B could perhaps still be functioning, but at a much lower level. In other words: the long term morphological changes in the PFC, that would be induced by exercises (which were possible by heating the iron), could lead to a solid enhanced ability of processing visual stimuli, at the very least in a stress-related manner. I just noticed the schematic is a bit off, but who cares.

Well this was just something I threw together real quick, I'm sure there are many flaws in the design of this theory, and could use some expanding in a scientific sense. But it does provide the possibility that lifelong medication (alterations) needn't be a concern, and that perhaps even one day medication could be ceased without having to experience any HPPD.

Anyway, at least you got some things to ponder about now ;)
And to answer your wondering: Occasional use of Benzo's won't do much damage for the long run, as long as you give your brain enough time to reregulate its GABAmimetisism before redosing. I now how stressful it can be to not be able to get back on track immediately. Fact of the matter is, you don't want to rush into things. I mean don't get me wrong, the faster you get appropiate treatment, the better (physiologically and emotionally). Just consider that there's a good chance this'll stick around for a while untill you get said treatment. Hence, try to let go of the "sh*t I'm wasting my youth" thoughts. Sometimes in life you gotta take a step back, no matter how bad you want to go forward. Instead, focus more on what you can do to help you situation ;)

If I skipped anything, let me know. Melatonin from last night still has me in a cloud.

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Well everyone, I'm pleased to report that Keppra has been prescribed to me.
Moreover, I will be doing EEG testing and VEP testing before embarking on the Keppra journey, and after.
I don't know the exact details yet, but I think it'll be a qEEG. Perhaps both.
This could provide some valuable scientific data for future HPPD research. Or at the very least, to confirm the findings of Casa and Bosio, ultimately making it easier to convince doctors to prescribe Keppra. But let's not get ahead of ourselves.
Anyway, I'm not in my most eloquent mood, seeing as I went out to celebrate last night.

So I'll expand on this later today or tomorrow.

Lastly, for those of you who are foreign to the Netherlands: it is advized to check insurance coverage before contacting the HPPD specialist.

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Thank you!
I guess you already know this, but I'll point it out anyway: The study suggested Keppra can take quite the while to work, sometimes even up to a year.
Dosage might also be a thing to consider.
What works for one, might not work for the other. Moreover, my HPPD is MDMA related, whereas yours is (correct me if I'm wrong) LSD related.
This could make a difference to what works and what doesn't.

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The DANA foundation linked to a Keppra-HPPD study ... but since it required a fee to read, I didn't do so.

 

Taking up to a year to work sounds very suspect since most HPPDers actually get better over time anyway.  Obviously there are people here with 5, 10, 15, 20+ years ... so "even up to a year" might be worth a try.

 

 

My Keppra trial has been troublesome.  But I've persisted it what ways I can because, at least for me, it reduces DR.  Currently, I take ~188mg before bed.  Helps with sleep and slight DR improvement.

 

I have side effect issues that I'll report:

 

Even at this very low dose, anger/temper is raised (and requires self-restraint). B6 doesn't resolve this.

 

It also causes a strange positive(?) afterimage on digital TVs and projectors.  It only shows if there is big white wording on black background.  The '?' is because, on TV it is solid yellow and on projection, there are large blocks of 3 colors.  It isn't negative afterimage, but a flash of different colored image.  Normally, only in extreme lighting situation, my positive afterimages would be a flash of exact image.

 

When taking 1125mg:

 

I ended up feeling sick with puffy eyes and dark circles.  Even though I stopped, this persisted for months.  It took a controversial detox method to resolve this problem.

 

Horrible memory problems.

 

Actually began getting mild CEVs, an HPPD symptom that I don't have.

 

Could not reach 1500-2000mg recommendation.  I can't imagine other people having these strange affects.  The only ones I remember reported are 'rage' and memory issues.

 

 

All that said, hope it helps you.  However - here comes the nag part - stop celebrating with heavy drinking, weed, or whatever ... if your serious about getting rid of HPPD, then you know what you need to do.  Also, how can you evaluate what you are taking when the parameters keep changing?

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I paid for the full Keppra article over a year ago but received only an abstract (which is posted). I'm not sure a full one is available. It is not fully clear but it suggests that if you are going to receive benefit, this will usually happen within 90 days. Some members have reported it taking 2-3 months to see benefits from Keppra, which consistent with this. What is not clear is whether they are talking about HPPD in relation to flashback hallucinations of their experience of their high, or whether they are referring to flashbacks in the context of of the persistent visual disturbances / abnormalities (what HPPD is commonly thought as). This immediately highlights problems with the DSM diagnostic criteria and the confusion it can cause.

 

(edited due to terminology error)

 

1589
Levetiracetam efficacy in Hallucinogen Persisting Perception Disorders:
a prospective study
Casa, B 1, Bosio, A 2. JDrug Monitoring Service, New York NY; USA;
2Mater Dei Clinic, Rome, Italy
Background: The occurrence of flashbacks following use of drugs is a
recognised condition known as Hallucinogen Persisting Perception
Disorders (HPPD), therapy for wlffch is based on neuroleptic and
attticonvulsant medication. Tiffs prospective study assessed the efficacy
of the novel atttiepileptic drug levetiracetam (LEV) in treating patients
with HPPD over a 1-year period.
Method: Patients with HPPD were treated with LEV 1500 mg/day
(500 mg in the morning, 1000 mg in the evening) for 1 year. Daily
flashback frequency and electroencephalogram (EEG) assessments
were conducted at Day 0, 15, 30, 60, 90, 180 and 360. The incidence of
adverse events was monitored throughout the study.
Results: 27 patients (121 males, 6 females), with a mean age of 21.8
(range 18-26) years, were enrolled. At baseline, mean daily flashback
frequency was 9.3 (range 1-45) and EEG assessment demonstrated
temporal slow patterns in all patients. Over the 1-year treatment
period, 20/27 (74.1"/o) patients became flashback-free. After 15 days,
7/27 (25.9%) patients were already without clinical malfffestations,
with 6 patients demonstrating > 75% reduction in flashback frequency
and 1 demonstrating 50-75% reduction. EEG patterns normalised in
18/27 (66.7%) patients after 30 days and in 23/27 (85.2%) after
90 days. 3/27 (11.1%) patients continued to have flashbacks, despite
complete disappearance of EEG abnormalities. Side effects were
few in incidence and mild in severity. No patient discontinued
treatment.
Conclusions: This study demonstrated LEV to be highly efficacious in
the treatment of HPPD, with very good tolerability and ease of use.

Edited by Ghormeh Sabzi
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Thanks for the abstract [ since you paid, they should provide the whole thing! ]

 

74% "flashback-free" sounds fantastic

26% within 15 days as well

 

This success rate seems incredible.

 

But there is confusion with the term "Flashback".  While plenty report fluxuations with intensity of symptoms, everyone seems to report HPPD as a constant feature.

 

Is "Flashback" meaning positive afterimaging?  And this is only one of many possible symptoms

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It is difficult to know what they mean without a full article explaining symptoms and providing other information. I did send an email of complaint but no one ever responded to me!

 

The success rate does seem incredible, which makes me wonder what symptoms the patients had and whether they are applicable to the majority on this forum. Whilst there has been some success with Keppra documented on this forum, the impression I get is that for every person who it does work, there are a few for who it does not work, which is not consistent with the study. Additionally, whilst some may experience benefit, not everyone becomes 'flashback free'.

 

The meaning and context of use of the term 'flashback' varies depending on who is writing the content.

 

In the case of drug-related flashbacks, the person usually re-experiences a visual or emotional hallucination previously seen or felt during a strong trip. This is defined by Grinspoon and Bakalaar as 'a transitory recurrence of emotions and perceptions originally experienced while under the influence of a psychedelic drug'.1 Flashbacks are usually associated with LSD, DOM and cannabis use. Studies generally show that roughly a quarter of LSD and cannabis users experience some kind of flashback.

Such flashbacks may or may not be triggered by a sight or sound. In the most extreme cases, strong visual hallucinations occur without warning, often causing alarm. Most flashbacks are episodes of visual distortion, time distortion, physical symptoms or relived intense emotion lasting a few seconds to a few minutes.

 

http://www.drugscope.org.uk/resources/drugsearch/drugsearchpages/flashbacks

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It would seem that if all the participants were "Episodic", then they had the milder (duration wise, not necessarily symptom wise) version of HPPD ... one that was resolving.  Anything borderline is much easier to fix/manage - thus the whole concept of early detection being important in treating disease.

 

I just made a brief poll to see what members on the forum experience http://hppdonline.com/index.php?/topic/1986-flashbacks-continuous-or-intermittent/

 

[ Ultimately it would be great to have the big questionnaire you are making ... but that will take a lot of time to create ]

 

 

Another observation of the study was the dosing: 500mg AM and 1000mg PM.  Perhaps that minimized fatigue?  Or let the brain rest at night to heal?  Or reduced side- effects?  It makes sense since it is sedative.

 

 

BTW, my response to Keppra improving DR was a matter of hours of the first dose.  And since trying higher dosing, it seems like it has stayed improved slightly.  Also, unlike the others, I am taking Sinemet and Gabapentin.  As far as emotions go, without Gabapentin, Keppra sends me all over the place.

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I think some people also consider flashbacks to mean vivid hallucinations as opposed to visual abnormalities.

 

There is also a lot of relevance to the borderline cases you mention.

 

My survey will probably be a couple of months away at least. I will try and complete before September as that is when I go back to my studies. It is a long process if I want to do it properly (I am going through the thousands of old threads on here and the visual snow forum for research). Obviously I have to work as well so time is limited.

 

I don't know their reasoning for dosage and times. I went up slowly (starting at 250mg and increments of this amount), and also took a vitamin-B complex at the beginning as well. I will post a thread when I am done but I have experienced minimal side-effects (or benefits).

 

Several general impressions emerge from our review.
First, the term ‘flashback’ has been defined in so many
ways that it has become virtually useless.
Some studies
describe specific recurrent perceptual phenomena, simi-
lar to those enumerated in DSM-IV criterion A for
HPPD, but most studies also include other psychiatric
symptoms, such as panic attacks, psychosis, mood
changes, depersonalization, dissociation, or experiences
of ‘unity’ and transcendence, under the heading of
‘flashbacks’.

 

http://www.neurosoup.com/pdf/halpern_hppd.pdf

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Visual, thank you for your elaborate response. First I'll adress the last bit. I agree, heavy drinking is indeed unwise.
I'm aware of my sometimes contradicting statements on alcohol. Hence I will try not to elaborate too much on it.
Next time I'll celebrate with oysters.


Moreover (maybe more importantly) it indeed does not allow for effective evaluation.
This is why as of today, I am completely (aside from tobacco) supplement and drug (and tDCS for that matter) free for the entire course of scanning and medication.
I don't expect this to be an issue, as I don't ever crave alcohol, and I know this will serve a (higher) purpose other than my personal health.
Tomorrow I will be doing the Cambridge DP survey, and again a day before starting Keppra.
Perhaps I will extend the washout period with a week, to be absolutely certain of parameters.
Just for fun, I'd like to get a complete blood panel done before and after.
I'll try to maintain somewhat the same sedentary lifestyle to not allow for sudden changes by exercise/endorphin spikes.
However, in the case that I do actually start to feel better, I might (most likely will not) not adhere to that latter statement.

Regarding your own experience with Keppra: if you felt sick at that dose, it is likely you were somewhat allergic to it. Hence it's not strange that you have marginal improvements. Have you tried other anticonvulsants? Lamotrigine seems to be the next choice.. Personally I rather not take it, for there have been some severe cognitive side effects reported. That said, you've experienced those with Keppra as well.
Could you tell me what CEV's are? I see this abbreviation a lot, but haven't been able to find out what it stands for.

Anyway, I figured I might as well point out that the Keppra study is available for download (internal link)
Regarding flashbacks... Last night I had a flashback/nightmare. I rarely have these (once a month perhaps, if I'm very unlucky.. I've had <10 so far), so I'm not that bothered by them. Thankfully, because they're extremely anxiety inducing.
Suffice to say, I slept pretty horrible. I think staying up late contributed to this. This is my secondary reason for why as of now I will do my utmost best to have a healthy, steady sleeping rhythm. Primary will be to try and keep my lifestyle as steady as possible, minimizing variables of outcome. Anyway, just to say.. How in the hell did anyone ever confuse this? A flashback is when there's a flash, back. Alas someone in history overlooked this. It would indeed be beneficial to come to acquire the full article. Perhaps it's possible to buy that specific journal on eBay or something? I'll bring this up next time I speak with the specialist.
Ghormeh: where did you buy the article? Straight at the Journal of Neurological Sciences' website?

I will also begin with a low dose. If no adverse effects occur, it'll be 2 x 125mg (+1 week) 1 x 250 & 1 x 125 (+1 week) 2 x 250 (+2 weeks) re-evaluation. If any adverse effects occur, vitamin B supplementation will be mutually considered. Goal is of course to find an effective dose. Some people have reported having experienced substantial improvement with low doses. Lowest reported is 50mg with 70% improvement of symptoms I believe.

Yes, I believe the dosing schedule can be an important factor.. I think Rene reported that a larger dose at night made things easier, but don't quote me on that.
Visual, how would you describe the improvements with DR? Because I find there's a difference between feeling less DR/DP'd out and feeling more like yourself.

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HPPD is also called 'flashbacks' in the official DSM diagnostic criteria.

 

Hallucinogen Persisting Perception Disorder Diagnostic Code: 292.89

The essential feature of Hallucinogen Persisting Perception Disorder (Flashbacks) is the transient recurrence of disturbances in perception that are reminiscent of those experienced during one or more earlier Hallucinogen Intoxications. The person must have had no recent Hallucinogen Intoxication and must show no current drug toxicity (Criterion A). This re-experiencing of perceptual symptoms causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (Criterion B). The symptoms are not due to a general medical condition (e.g., anatomical lesions and infections of the brain or visual epilepsies) and are not better accounted for by another mental disorder (e.g., delirium, dementia, or Schizophrenia) or by hypnopompic hallucinations (Criterion C). The perceptual disturbances may include geometric forms, peripheral field images, flashes of color, intensified colors, trailing images (images left suspended in the path of a moving object as seen in stroboscopic photography), perceptions of entire objects, afterimages (a same-colored or complementary-colored "shadow" of an object remaining after the removal of the object), halos around objects, macropsia, and micropsia. The abnormal perceptions that are associated with Hallucinogen Persisting Perception Disorder occur episodically and may be self-induced (e.g., by thinking about them) or triggered by entry into a dark environment, various drugs, anxiety or fatigue or other stressors. The episodes may abate after several months, but many persons report persisting episodes for 5 years or longer. Reality testing remains intact (i.e., the person realizes that the perception is a drug effect and does not represent external reality). In contrast, if the person has a delusional interpretation concerning the etiology of the perceptual disturbance, the appropriate diagnosis would be Psychotic Disorder Not Otherwise Specified.

Diagnostic criteria for Hallucinogen Persisting Perception Disorder

  1. The re-experiencing, following cessation of use of a hallucinogen, of one or more of the perceptual symptoms that were experienced while intoxicated with the hallucinogen (e.g., geometric hallucinations, false perceptions of movement in the peripheral visual fields, flashes of colors, intensified colors, trails of images of moving objects, positive afterimages, halos around objects, macropsia, and micropsia.
  2. The symptoms in Criterion A cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
  3. The symptoms are not due to a general medical condition (e.g., anatomical lesions and infections of the brain, visual epilepsies) and are not better accounted for another mental disorder (e.g., delirium, dementia, Schizophrenia) or hypnopompic hallucinations.

 

The flaws contained in the DSM diagnostic criteria is something I have mentioned before. Actually the DSM have been criticized in many quarters for their diagnostic criteria of other disorders as well.

 

The study available for download on this site is the same one I have. I purchased from www.elsevier.com or one of its subsidiary sites. It is possible that a full article was never published (only the abstract). Dr Abraham initially only released the abstract of his study before publishing the full article months later.

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So here's a quick update on my situation:

Monday I'll be contacting my doctor, to see whether I have been referred to the Neurologist. Hopefully things will go swift, and I'll be able to get tests done that very week.

I've inquired about the full Casa/Bosio article, and it is currently being dealt with. I'll see what I can do about obtaining and sharing it, with copyright nonsense and all that.

Ghormeh: I'll be receiving the questionnaire for HPPD symptoms shortly, and will translate it for you a.s.a.p.

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