onedayillsailagain

Hey Kellen, welcome! Yes there are a few cases where people didn't know what they had for over a decade.. I believe some of us here can relate to that. Sorry to hear you've had to go so long without knowing what you had! Personally I can't imagine what that would be like.. I guess the internet wasn't really around at that time, which would've made it very hard to find out. It took me some creative googling as well before I could find out what HPPD was. Important thing is that you did though I look forward to helping you out in any way I can, as I'm sure we all do here! Cheers, Odisa

To me it sounds like your dealing with a bout of depersonalization/derealization. Which sucks, because.. well DP/DR just sucks. 5 months is a long time to walk around with this.. sometimes the visual distortions can linger after a trip, but clear up within days to weeks. In the case that it says longer, it's probably a case of HPPD. How have you been doing cognitively? Is your memory still decent, and how's your focus? Could you hold a job or education? Any other parts of your life being affected negatively? Can you still partake in traffic? Needless to say, quitting all drug use would be best (if not essential) to recover. Stress and anxiety management (anxiolysis) is also a key factor to allow for healing. Living a healthy, stress-free lifestyle will increase your chances significantly of this subsiding. Interestingly, my visuals also spike with orthostatic hypotension. Going to the doctor is a good first step, but be prepared for the possibility that he'll have no clue what to do about it, and might not even acknowledge it. One thing that might help, is to print out the DSM page on HPPD. It's official, which doctors like. How has Sertraline been working for you in the past? Perhaps consider switching to another antidepressant, as some seem to be more efficacious than others in HPPD cases. Maybe someone else might be able to suggest one, because personally I just don't like SSRI's, and also seem to have forgotten which are used in HPPD. Ahh I just remembered; there have been some cases where Venlafaxine was used successfully. And there are more options. Some medications (like Risperidone) have been reported to aggravate HPPD, and as such I suggest that you return to the forum to inquire about any new prescriptions you may have gotten. Most of it is just advice from experience, but some scientific studies exist as well. Have a look over at the Downloads section for some scientific studies. Either way, I'm sure we'd all be happy to give you support. Let us know how your doctor's appointment went. Also, depending on your location, some may be able to suggest a specialist. From what I know, there are specialists in Australia, The Netherlands, the US, and the UK. If you have any other questions, don't hesitate to ask. Good luck with the doctor, and in the meantime try to find a way to relax a little

Hey bpl, so sorry to hear that! Seriously though, blocked all self-help sites? What the hell?! I don't know how old you are mate.. My parents used to be a bit like that, but thankfully I somewhat 'tamed' them before I acquired HPPD. They take out the router? I take their phones. They put a timer on the internet? I hack into the router and block their PC's. I was a sly little mongrel though, and that was years ago. Can't imagine what it would be like having your parents treat you like this when your an adult (16+). I'd say the best thing to do would be to apply for a "unfit to work" kind of status, and pull money from your country for now. In any case, you'll be living away from your family. Which should give you some well needed relief. I forgot: have you been officially diagnosed yet? That could definitely help, especially when applying for free money/free living programs. Until then.. yeah I don't really have advise there.. sounds like you have some stubborn old-school parents there.. Those are hard to deal with, usually they're best left behind. Or so is my opinion really, I'm quite biased on this. Obviously it's up to you what to do about the situation. Getting a diagnosis / competent professional is arguably the hardest and the best thing to do. Good luck man.. Really hope you manage to keep it mellow. Having too much stress (like being extremely pissed the F off at your parents for being idiots) will likely contribute to it taking longer to heal. Yeah, not the most inspiring words. But being as stress-free as possible is one of the best things you can do for you to heal, and as such pursuing alternate living options is well within the scope of what can be considered healthy in your case. Best wishes!

Hey Visual, it's kind of late so I'll keep this short for now. Thanks for responding! I'll have a look into the LC tomorrow.. I'm aware that the brain is infinitely complex, hence I'm always weary of drawing any conclusions at all, for there's always a "Yes, but" lurking around the corner. Which is fine, makes it all the more interesting. Anyway, tomorrow I'll also be doing some info-gathering of Guanfacine, an apha 2a adrenergic agonist. So I'm sure I'll also refresh my (nor)epinephrine knowledge. I'd appreciate it if you could comment on that once it's finished, as I might consider it as an adjunct for in the future. Seems superior to Clonidine so far. If your referring to the Val/Val - Val/Met polymorphisms.. I thought those were just models used to prove a point, but that they weren't intrinsically involved with the pathogenesis of HPPD.. Only that a COMT disruption may worsen HPPD symptoms, or so I could imagine. Hmm, I covered COMT way too long ago to remember properly. If you say hyper-vigilance causes hyper-excitability/pre-seizural activity... then just out of curiosity, would you say PTSD has seizural activity involved? Yeah I make sure to Ctrl+C the hell out of the things I write.. One wrong move and all is lost. Frustrating, cause even then sometimes your computer may randomly decide to reboot itself for an unauthorized update.. Screw Microsoft though, go for Linux! Hmm I'm gonna continue reading "Why Zebras Don't Have Ulcers".. Or actually I'm reading "Waarom krijgen zebra's geen maagzweer?"... Dutch is arguably the worst language to discuss science in. But hey, at least it covers some basic autonomic nervous system stuff, which gives for a light read (as opposed to the usual "damnit this crap is too complicated for my damaged brain, nevermind"). I'll might add some thoughts on this tomorrow, for now I'm quite tired. Cheers.

David, thank you very much! And that App sounds like an great idea! It'll definitely help in speeding up the process for people seeking treatment.

This is a typical situation of "Re-inventing the wheel". Choline supplementation has long been known to improve cognition, and there are numerous other, more efficacious forms of choline supplementation (such as Alpha GPC and CDP Choline, or even Choline Bitartrate if you must). Also, the article is biased and poorly investigated. Moreover, most (perhaps all, I didn't click every single link) studies provided link to other forms of choline supplementation, rather than phosphatidylcholine itself. Phosphatidylserine shows far greater potential in mitigating HPPD. In any case, taking a (soy) lecithin supplement would be better than taking solely phosphatidylcholine, as it contains other phospholipids as well. Supplementing (possibly along with lecithin) extra Phosphatidylserine will probably be even better. But no, I haven't tried this supplement.

I don't really have any concrete/specific evidence of calcium's role in HPPD.. So that makes for a flawed start. However, of note is that many Calcium Blockers (like Keppra, yet Keppra is unique from other CCB's) seem to be very helpful in treating HPPD. Furthermore, excess calcium causes excitotoxicity, and some believe HPPD is a form of Toxic Encephalitis. Also see this theory. Anyways, recently I was reading a bit about Cortisol, which lead me to this: source Which was based on this: source So perhaps there's a link here between anxiety, cognitive dysfunction, and HPPD? I know this is very inconclusive, and I'd like to portray it more concretely, but not much springs to mind at the moment. Basically, Cortisol production is regulated by ACTH, which mediates through calcium, where excess calcium would cause an increase in cortisol levels, and calcium inhibition would then cause a decrease in cortisol levels, ultimately altering stress/anxiety and cognition, which when altered, have a better chance of returning to homeostasis, for we all know stress can cause stress. Any thoughts to add here? I'll add more later if I think of a way to clarify.

I can relate to this. Today my mother complained rather endlessly about my lack of efforts in the household. Firstly, I literally cannot see any dust or residue, so to me everything looks pretty clean. Combined with a lack of perception, (and a contrast between my higher threshold of chaos, and her, in my eyes suspected, OCD), that leads to me not noticing the state the apartment is in. Thirdly, my memory is such crap, that she can ask me in the morning to clean something up, and in 5 minutes I'll have forgotten it. Lastly, shopping for groceries just seems like a needless torture, and thus I avoid it. Somehow it is really hard for people to empathize with HPPD, despite claims that they do. Alas, this leaves you portrayed as a lazy delicate flower, and can make you feel like so, if not more incompetent. Ultimately, with me at least, this leads to utter annoyance and an even greater distancing to people.. Suddenly the lack of insight of the majority of people is emphasized, along with the tendency of most people to blame and degrade others for things they dislike. Makes you feel very unwanted at times. Just one of those things to add to the list of what must be endured, I guess. The occasional (semi-)morbid portrayals of daily annoyances, I find, is warranted. Sure beats vandalism or other similar outings EDIT: I guess you can say, that HPPD is almost like survival.. Main goal is to eat, sleep, and live another day. Sounds pessimistic perhaps, but I experience it as such.

Being determined to cure this? Refusing to live dead, and wanting to die alive? I just made a pact with myself: either I cure this, or suffer while trying. Despite the praisable efforts already employed, I find it unacceptable that there's so little known about HPPD, and that those afflicted with it are left to fend for themselves. However rare it may be, HPPD has been the worst thing that ever happened to me, and I have been through a lot in my few years. I can't let this happen to other people. That, with faint faded memories of joy and love, keep me going. And knowing that nothing lasts forever.

Sorry mate, can't help you there However I remember looking up that melatonin issue, cause I had the same concern. I remember the answer being "no", but don't quote me on that. It should be safe to take those amounts without down-regulating Melatonin receptors or production, but again, don't know for sure. I think it's quite harmless though.

Yeah I think you're not alone in being extremely pissed off (seriously, that BS got me furious to the point of almost breaking an elevator.. long story) about that. I think you'd do best in getting a second opinion.. But I don't know what country you are though (might've forgotten). Syntheso posted a good UK referral recently, and I myself found an actual HPPD specialist in the Netherlands (who's been amazingly helpful). But it's hard both logistically and financially if you're not already in the country. Some European insurances cover foreign treatment however, so who knows. As for the US, well there's always Boston I believe. Australia seems to be the hardest to get help (strict pharmaceutical laws), but there might be some recommendations swimming around here as well. Anyway hope you can endure the "how the hell is it, that my damaged brain works better than your healthy one?" phase with the psychiatrist(s). If you could post your country, people might be able to recommend professionals. No worries about replying, I haven't been all that disciplined about that either. Again, best of luck!

Hey Puppeteer! I planned to respond earlier as I said, but you know, withdrawing behavior and such. I'll skip commenting at length to your post about your psych appointment, but it sounded like it went very well! Well, aside from the fact that he told you you might be pre-psychotic. When I shaved my head to do my tDCS experiments, my shrink told me that many psychotic patients shave their heads. He wasn't really the re-assuring type. Come to think of it, he was a downright fool. Even though it may feel like a prodrome (thought they called that a "fugue state"), I sincerely doubt you're in one. Anyway, one thing to know is that time totally screws up when you're psychotic (e.g. you look at the clock, it's 3:30, you blink twice and it's 4:15). At least, so it was IME. Anyway, regarding the nootropics: probably a bad-ass combo you got going there. Melatonin can be upped if you feel the need; there's no lethal dose. Ashwagandha can take a while to have effect, and you might consider altering dosage (schedule) if no effects are apparent after a while. By the way, Citrate is not the most preferable form. Malate is. But either way it's better than Oxide. I wouldn't know how well all of those combine with Cymbalta though. And not all spice has synthetic cannabinioids in them, so no reason to worry that much. Unless you're absolutely sure it was Kronic. Besides, some people just sell grindings as well. Anyway, unless your symptoms took a long-lasting turn for the worst, there's little to worry about. I think most, if not all, of us can relate to this in numerous ways. I for one sure do. And it can be very frustrating to sit there knowing that all that person has to do is sign a little paper and you're good to go for Keppra. Makes you feel very... dependent. Anyway man, hope you get it prescribed today! Let us know how your follow-up appointment went. Best wishes.

source (Press Ctrl+F and search for "B6" to find it among the dozens of abstracts)

By the way: Should Clonidine not work out for you (hope it does of course), perhaps consider Guanfacine. It's also an α2 receptor agonist like Clonidine, yet slightly different of course. The stuff sounds pretty amazing to me, have a look at it if you like. However it does have some potential visual effects, but I guess all drugs carry some potential side effects that needn't happen per sé. Edit: found a study of the effects of both Clonidine and Guanfacine on Prepulse Inhibition: http://ww.andp.org/skins/main/pdf/chapter_abstracts/PTTA09Abstract_Alsene.pdf

Good luck mate! Hope it works like a charm for you! Let us know how it progresses.

LarryC: You can find my comments on Mirtazapine over here. Ghormeh: There's a slight delay in getting the questionnaire.. Perhaps by tomorrow I'll have it.

Levetiracetam suppresses neuronal network dysfunction and reverses synaptic and cognitive deficits in an Alzheimer's disease model Reduction of Hippocampal Hyperactivity Improves Cognition in Amnestic Mild Cognitive Impairment [PDF] Levetiracetam improves verbal memory in high-grade glioma patients Effect of levetiracetam monotherapy on background EEG activity and cognition in drug-naïve epilepsy patients A long-term open-label extension study assessing cognition and behavior, tolerability, safety, and efficacy of adjunctive levetiracetam in children aged 4 to 16 years with partial-onset seizures Disfluent speech in patients with partial epilepsy: beneficial effect of levetiracetam I'll add more if I find more later.

Nice one Syntheso! Yes, it is true that the latest experiments and inventions have been targeting gutamatergic transmission. I think someone her thought that a cyclical glutamergic excitotoxicity might be what was perpetuating HPPD, but don't quote me on that. However, there's a difference between glutamine and glutamate! Yes: it is dizzying. Fun fact: high doses of L-Glutamine are anxiolytic. Basically though, glutamate is the most important excitatory neurotransmitter. From wiki: Well hey there, did that just say mitochondrial and excitotoxic damage from excess intracellular Calcium?? Awesome, didn't know that! So mitochondrial support (Resveratrol) could definitely aid in the mitigation thereof. Anyway; it appears glutamate, calcium and seizural activity are all interrelated. So there's some food for thought Thanks Syntheso!

Hmm I guess you can forgive them seeing as it was an emergency! But it doesn't surprise me that Scopolamine would worsen symptoms, being an anticholinergic and all... Perhaps it is possible to have your doctor alter your medical record to state that you don't want this in the future. Thanks for sharing though!

I suppose it could be that your visual cortex is trying to compensate for the loss of vision (occurring by closing your left eye), and in the process doing so overcompensates? Honestly I wouldn't know, just throwing out a possibility to consider. When you say your right eye is just fine, but the processing isn't as good as your left.. Then there was already something going in your visual cortex maybe, and thus since HPPD it could have gotten worse? Another thing to consider is that in a study in HPPD, when pressure was applied to the left eye, visuals worsened in the right eye, and vice versa. Now I haven't really given you any answer.. but just some possibilities to consider to come to your answer I think other members might have more insight on this.

Isn't there something less invasive (e.g. ginger) that could do the trick? Just something to consider

uknowme: What.... They gave you scopolamine? Hell I'd rather have the worst nausea ever, than to put that in my body. Aren't you able to deny these things?