Hall89

A bit more on it: https://pharmatimes.com/news/neurona-secures-120m-to-advance-lead-cell-therapy-candidate-for-epilepsy/ But sadly only 30-35% get past phase 3 trials, and this is a loooong process, we're talking a minimum of 5+ years. https://g.co/gemini/share/a5bfbd1240f9

You didn't get derealization, depersonalization, decreased cognition, or as it says in the litterature: "acquired dyslexia and a not withstanding normal intelligence" with your HPPD right? Also, the constant uncontrollable anxiety and most of the visuals? For us that got all of this, there's no "not thinking about it", it's impossible, because the dpdr and anxiety is so crippling and robs you of pretty much all quality of life.

Doesn't seem to do much, if anything. I quess that they've, like most of us, have realized that getting some real research done on HPPD, like VSS, just ain't going to happen. Only some surveys here and there, but no more comple neuroimaging studies. There is the protocol at Mcquarie University, but McConnell is asking for $800 000 dollars for it, which is absurd, so pure greed from his part, that's never going to happen.

I've been on Clonazepam for 4 months now and i got this as a side effect from it. I already had it prior to it, since it's two of my many visual disturbances that i got with my HPPD, but Clonazepam increased my ghosting by ~50% and also caused diplopia. It has slightly improved the other visuals though, but no more than what Lamotrigine did for me, which i sadly built a tolerance to after two years. The first 4-5 weeks on 1.5 mg Clonazepam was awesome though, hadn't felt that good since getting HPPD and my visuals improved with 20-30% and kept the non-visual symptoms away as well, but then the good old tolerance came knocking at the door and i've had to increase it twice since (at 2.25 mg now), but the vision is no better than what it was on Lamotrigine now,which is a 5-10% improvement, but even though my vision is crap, i primarily medicate to keep the non-visual symptoms away (dpdr, decreased cognition, dyslexia, foggy mind, anxiety etc), which are the most debilitating ones with this disorder, and for that, it still does the job with the new dosages. Will soon try Keppra though, and with some lucl that will be my savior and i can slowly get of Clonazepam, which most likely will be hell.

You're real lucky that you've been able to treat it long term with it! Very few can, because of how fast most people builds up a tolerance to benzos and have to constantly increase the dosage for a maintained effect, which eventually ends up in extreme suffering. So it really should be the last resort. Imo people should try Keppra, Lamotrigine, Valporat etc first.

Don't think you have to worry about not getting Klonopin anymore, in worst case scenario there's Dr. Steven Locke in the US that definitely will prescribe it to you if you become his patient and tell him about your success with it. But the list of withdrawals is a list of POTENTIAL withdrawals that one can experience, so it doesn't mean that one will get them all. A slow taper with a cross-over to Diazepam doesn't have to be very hard at all, but it's different for everyone. Those that get real severe withdrawals are usually the ones that have abused it for years and then go cold turkey or wean of it way too fast. Below is a quote from the manual that you might've missed: "It is sometimes claimed that very slow withdrawal from benzodiazepines “merely prolongs the agony” and it is better to get it over with as quickly as possible. However, the experience of most patients is that slow withdrawal is greatly preferable, especially when the subject dictates the pace. Indeed, many patients find that there is little or no “agony” involved." But yes, having HPPD will make it harder, since the withdrawals will results in more excitatory neurotransmittors, primarily glutamate, and that will temorarily worsen the HPPD. So yeah, going of a benzo with HPPD will be tough, and i'm certainly not looking forward to it if Keppra works (will be prescribed early next month), because then i will have to start to wean off it. But for now the Clonazepam is the only thing keeping me alive, sadly i have to up the dose around every 6th week though because of it losing effect. I started at 1.5 mg at the end of May, and now i'm at 2.25 mg. It means that 90% of her patients became benzo free, and i quess that the other 10% gave up and continued taking their benzos. I hear you! But i envy you, because i wish that my Clonazepame could continue working for 10+ years against my HPPD without having to up the dose like it has for you, which quite frankly is a miracle, and i'm certain that many with severe HPPD would as well. Personally i'm not functional without some med taking the worst symptoms away, so for me it's literally between life or death.

Risperidone is an antipsychotic, and antipsychotics are generally bad for HPPD, so i wouldn't touch it. Antipsychotics are btw some of the worst psychiatric drugs there is, the list of potential side effects are almost as long as the bible and it's been seen that they with time actually decrease the amount of grey matter in the brain. Imo, any doc that prescribes antipsychotics for anything else than psychosis/schizophrenia, and in some cases bipolar disorder, should get their license pulled.

I believe that severe HPPD is the most agonizing non-lethal neurological disorder there is. It's pure torture, no quality of life what so ever.

Sure wish that they could've thrown in a few HPPD patients in the study.

Sadly it doesn't for everyone, especially not long term because of tolerance (vast majority from what i've gathered). It's a real slippery slope. I so regret not fighting harder for Keppra before trying long term treatment with Klonopin when my Lamotrigine gave out after two years, but my doc looked at the side effects on both of them and read some in the HPPD litterature and wanted me to try Klonopin first. But now, 3½ months later i'm physically dependant to it. So if Keppra works, which i soon will be prescribed, i have a long time weaning of it ahead of me with the Ashton method. Hopefully it won't be too painful with it. PS, i've been talking to a guy on FB that has as bad HPPD as one can get it, and for him neither Lamotrigine, Keppra or Klonopin had any effect, but Xanax takes away 70-80% of his symptoms, which is real wierd. He's been on it 10 years now, but because of tolerance, it only works for like 3 hours now, and the doc doesn't want to increase his dosage, so he can only take it 3 times a day, so he basically has crippling HPPD 50% of the day and the other 50% relief.

Well, seeing what benzos does to the brain long term, in most cases loses it's effect rather quickly, causes physical dependance fast and real nasty withdrawals for most, it's not that strange. And looking to the studies that has been done on microdoses of psilocybin in a clinical setting si far, one can't deny it's efficacy and safety profile, or as long as one doesn't mix it with other 5HT2-a acting drugs, which most definitely increases the chances for this hell of disorder, dpdr etc. From what we know so far, it's a much safer alternative than antidepressants, which imo is poison. But i feel your frustration mate and i can't imagine the hell you're going through now. But did Klonopin even do much for your symptoms? I remember you saying that it only took the edge off.

Yep, SSRI withdrawals can be a nightmare, so just like benzos, it should be done slowly. But when it comes to SSRI's, a study showed that it's the lowest therapeutic dose that gives 70-90% of the effect, depending on which one it is. So it has to be done real slow when coming down to the lower doses, a method that many uses is to decrease 10% of their current dose every 3-4th week, which is best/easiest done with a liquid form. As said, i had been on Celexa (20 mg) for 13 years when i got my HPPD, and when i a couple of months after the onset read that it generally worsens HPPD, and in very rare cases can cause it, i started weaning of it, cutting pieces of and using a precision scale that can weigh mg. Today i'm at 5 mg, but i feel that i could've dropped the first 10 mg over two months, because it was when i got below 10 mg i started to get real rough. I actually paused it in december, because the drop from 5 to 4.5 mg was HORRIBLE, so i backed up. But this was all done during the time that Lamotrigine kept my worst HPPD symptoms away and i was functional. So for now i won't touch it. If Keppra works, which my life kinda depends on, i will have to wean off the Klonopin, and then i'll continue the SSRI taper, but as said, it all hangs in the balance on Keppra - that it can give me a similar symptom relief that Lamotrigine did. God it's frustrating that my body built a tolerance to it, and now gradually doing it against Klonopin as well, so you're lucky there. Jesus! When it comes to docs and psychiatric meds, it's like >90% of them don'teven have basic knowledge about them. It literally takes a few min to check the interactions at drugs.com, and thanks to internet and our access to pubmed, we can learn more about it than what many of those know, ChatGPT 4 is also a godsend. Yeah, you should really just be on Lamo and Klono, the rest is definitely affectingbyour cognition. But remember that Klonopin has an affect on this as well, but in your case it's better than the alternative, because the impaired cognition/brainfog that you, i and many others get with it, makes one feel as dumb as a fish. I could literally not ecen get through the alphabet in my mind before i got on Lamotrigine, and pre-HPPD i was a straight A student. I enjoy talking to you to, i will answer your DM later!

To put it short, one gradually do a cross-over to Diazepam instead, then decrease 5-10% of ones dose every 3-4th week, ofc depending on withdrawals, if one isn't stable after that, go even slower.

Nope, it was homegrown. I've come in contact with quite a few that got it from weed alone, and it's established in the litterature. THC rich strains can actually cause psychedelic experiences. Also, i barely got any high when i smoked it, just a few puffs to help me sleep.

And i'm curious, does it still give you as good effect as the first months, that is, keeping your mind clear, head pressure away, dpdr etc, except when you have the "flare ups"? And which symptoms do you het with these flare ups? Sorry for all the questipns

Yeah, they really should, their list of side effects is almost as long as the bible and being on it long term actually decrease the amount of grey brain matter in the brain. Heck, 1 in 10 gets diabetes from Abilify, it really is poison. I have a brother that's schizofrenic, and i see first hand all the side effects he's struggling with, but it's better than the alternative, which is being in a psychosis. Yeah, i'm sure that you won't have to worry about being cut off, you've been on it for so long, so doing that would be malpractice on the doctors part. I'm no doc, but if i were you i would cut them all except the Lamo, Klono and maybe Wellbutrin, depending on how it affects your HPPD the coming months. But combining Buspar and Sertralin, is not good, since they both affe t the serotonin receptors, which increases the chances of getting serotonin syndrome, hppd and even medically induces psychosis. And since you're already on Klonopin and Lamotrigine, i see no reason to why you should be on Depakote/valproate, i mean, being on 3 antiepileptic drugs when you don't have epilepsy makes no sense. Imo, the less psychiatric meds thay you have in your body, the better, especially antiepileptics because of thei affect on memory etc. Sorry to hear about the abusive asshole you got in to a relationship with, but i'm glad that you have such a supporting husband as you do now! My case is kind of ironic, because i got my HPPD (same severity as yours) from cannabis alone, which i turned to for self medicating chronic back pain and insomnia. No history with any other drugs than alcohol a few times a year. I was however on an SSRI, which i believe increased the chances of getting this debilitating nightmare of a disorder. But it's ironic, since i only did it like 8 times, so i must've had a real vulnerability for it, since there's people regularly using psychs, smoking weed and are on psychiatric drugs as well for years and don't get it. But i quess that some of us has to draw the very short straw. Honestly, i would rather have taken my chances with cancer than this or be paralyzed from my waist down and no ability to speak. Severe HPPD is imo without a doubt one of the most agonizing non-lethal neurological disorders there is. PS, i'm a 33 year old male, got this february 21 2021, a date that i never will forget.

It's crazy that it had such a good effect on your visuals, snd god do i envy that it still works for you! Consider yourself EXTREMELY lucky when it comes to that. And yeah, antipsychotics is poison, they really are some of the worst psychiatric drugs there is, and in my opinion,any doc that prescribes them for anything but psychosis/schizophrenia and sometimes bipolar should lose their license. I live in Sweden and i won't have to worry about getting my Klonopin, because my doc is great! It is however extremely difficult to get it prescribed here, but since she's aware off that i will check out the day that this can't be medicated anymore, she did some reading and asked me if me if i wanted to try it and see if it might work long term, sadly it didn't and now i'm dependant off it, so if Keppra works, i will have to wean of it. I wish that i was on your kind of borrowed time instead, because i have no problems getting legit pharmacy Klonopin in blisters from the black market if i for some reason couldn't get it the legit way anymore. I'm curious, are you still on Sertralin? If not, how long were you on it? Or are you only on Wellbutrin and Klono now? Have the symptoms that flared up when you got on Wellbutrin gone away?

I'm curious, which symptoms did you get with your HPPD? Did you get the common non-visual ones, like dpdr, head pressure, brainfog/impaired cognition (feeling dumb), visual snow, ghosting etc? Also, you're EXTREMELY lucky that Klonopin still has an effect, it's very rare to not build up a tolerance rather fast to benzos. If you got said symptoms, how much has it helped them? Lamotrigine took away my occational hallucinations and 90% of my non-visual symptoms, also improved my static, palinopsia etc with like 10%. But after two years i built up a tolerance and it lost it's effect, increasing the dosage did nothing either. Anyways, i got prescribed Klonopin by my doc (1.5 mg) and it worked as well as Lamo, even improved the visuals like 10% more than it, but after only 6 weeks i felt how it gradually were losing it's effect, so at week 8 i upped it to 2 mg, and now i've been on it for 4 weeks and once again gradually feel how this dosage is losing it's effect, so i'm living on borrowed time. But i will soon get an appointment to my doc and we will try Keppra instead, since quite a few here has had some success with it, and since Lamo worked so well for me, hopefully it will as well. If it does work, i don't look forward to weaning of the Clonazepam though, but from what i've gathered it doesn't have to be very painful if one decrease 5-10% around every 3-4th week, especially when one hasn't been on it long term. Anyways, you could try to add Lamotrigine to your mix, a low dose might improve your symptoms even more. Also, did you start at 3 mg right of the bat or?

Old post, but were floaters and tracers the only visuals you got? No static, ghosting/blurry texts etc? What about brainfog/impaired cognition?

So, i did some digging around, and from what i've gathered long term use of benzodiazepines, like Clonazepam, downregulates the GABA receptors, which in turn results in less GABA, and because of that too much glutamate, which is neurotoxic. But if this really is the case, how the heck can some people use Clonazepam for decades with a maintained effect? I know of two members on this forum and two in the HPPD group on FB were it has done miracles for their HPPD and they've been on it for 8+ years. When i read this i got scared asf, because in my case all of the non-visual symptoms (dpdr, head pressure, anxiety, vivid dreams, impaired cognition/brainfog etc) and the hallucinations seem to be caused by some glutamate dysfuction, since Lamotrigine took away those symptoms for me, or well, still had like 10% dr left. So since i built a tolerance to Lamo, i've had to be on 1.5-2 mg Clona for three months to be functional by keeping those previously mentioned symptoms away (building tolerance to this as well). But if this is correct, my HPPD will get worse because of the excessive amount of glutamate that awaits me the more the GABA receptors becomes downregulated? Anyways, i will soon try Keppra, and with some luck that will work as well as Lamo did and i can slowly wean of the clona. God i hate this disorder! I would rather have taken my chances with cancer than having this.

Wtf?! How can they do that, can't that cause a lethal seizure? And from what i've gathered, tapering off benzo too fast, usually causes withdrawals like severe HPPD, only that they're temporary. So one could say that you have HPPD x 2.

Some of you may have read my posts here over the year, but here it is (long text) • I got severe type 2 HPPD february -21 from cannabis and was bedridden for about 8 weeks. Ironically i turned to it in hope of being able to self medicate insomnia. • Went to the psych ER after all scans and tests had been done and i found out on the web what i had gotten. I got prescribed Lamotrigine, which only after 5-6 days started to decrease the dpdr/dissociation, head pressure, brainfog/impaired cognition, vivid dreams, feeling of having cotton in my head, well, all the non visual symptoms. At 100 mg they were all gone, except ~20% of my DR and tinnitus. It also eliminated the regular pseudohallucinations, tunnel vision and improved and stabilized all the other visuals with like 10% (vs, halos, ghosting, palinopsia etc. So they never fluctuated. • I became functional again and finished my studies that i had to pause when i got it, then i started working 75%. But the remaining visuals and trauma of it all gave me a depression. So about 10 months in at 100 mg i tiltered it up to 150 mg to see if that would decrease them, but it didn't, so i gave it one last shot and upped it to 200 mg, but with no improvement. • Months went by and i gradually accepted them and my depression got better, so i saw a light in the end of the tunnel so to speak and i had gotten back to my old daily routines. • after 2 years on it i gradually started to feel some of the old symptoms, one day it could be the brainfog and having difficulties to even find words and putting sentences togeter, another the head pressure, and over just a few weeks it went real fast downhill, so my body had built up a tolerance. My doc told me to up it to 300 mg, but that did jack shit, so once again my life fell in to ruins, and the timing was horrible. Because as this was happening, me and my better half since 6½ years together we're moving apart (not breaking up), just getting our own places, since my depression had taken it's toll on pur relationship, so we wanted to give eachother a little space, since my depression affected how she felt as well. We also had a trip booked for a week to get away from everything, which we booked prior to deciding to move apart. • To be able to take this and not end up hospitalized, i in desperation got some Clonazepam from from the black market, and 1.5 mg of that eradicated all the non visual symptoms and even improved my bfep and tracers by ~30% and calmed my static down a little bit, and we made the trip and it did miracles for our relationship, it's like we we're newly in love again, and seeing how great the kpin worked and after reading alot of stories were it has worked for 10+ years with a daily use fof some, i got extremely hopeful. The thread/study about it being able to mlre or less cure it also gave me hope (turned out to be type 1 patients in it though...) • After about 4 weeks on it i got diplopia/ghosting as a side effect from it, i already had it, but this worsened it by like 40%. Sadly it's a potential side effect from most psychiatric drugs, but seeing how it kept everything else in check, i could accept that. • After about 6-7 weeks i felt the old symptoms slowly crawling back up on me again, so my piss body had started to build a tolerance here as well. • My doc/psychiatrist called a neurologist and they decided that they want to perform an EEG test on me, but to be able to do that they will have to cut my meds and hospitalize me for two weeks in the near future, since both Lamo and Clona will interfere with the results. Because of the risk of going CT of a benzo they will have me under close supervision. From what i've gathered they want to do this for a potential case report, but probably also out of curiosity, but when it's done they will immediately put me back on Clona and then slowly wean of it. I've only been on it for 10 weeks so far, so hopefully the withdrawals won't be to brutal and long lasting. So not only will i have to endure the withdrawals from these meds, my HPPD will come back in full force, and i'm so scared that Keppra, which probably will be the next med that they will try, won't work, because then my life is over and there's not much else to try. There really is nothing in this world that can make me want to live with the grade of HPPD that i have unmedicated, i could barely take care of my hygiene prior to Lamo or even eat, not watch TV because of the tracers, afterimages and ghosting, barely read on my phone, drive etc, and that to me is no life worth living, add the dpdr on this. So i'm as it says in the title scared shitless, my entire life hangs in the balance of a medicine being able to decrease my symptoms, and that my body builds up a tolerance to meds like how the bullets bounce of the terminator doesn't make it better. It's ironic how some weed can cause something so devestating and life ruining. The things i would do to be free of this, or i would settle with the affect that Lamotrigin had, then i could live a decent life with my better half. But unmedicated i won't be able to uphold our relationship, it would drag her down too much, so in would've had to break it off, and when i check out, it will traumatize her alot, even if we break up before it, same with my other close ones. But i'm certain that if they could've lived just one week in my body with this unmedicated, they would've understod why i want to chose that road, and maybe even have been able to accept it to spare me the suffering, just how you put a sick dog down, and afterall, we all die some day and around 70 000 people do it daily, it's as natural as living, not that i really want to, but it beats the alternative. Also, since 2009 i've been on the poision Celexa (20 mg a day), which i suspect increased the chances of getting this, since THC also binds to the 5HT2-a receptor, so there could've been a drug > drug interaction, but who knows, i've talked to plenty that got it from weed. But when i found out that antidepressants in rare cases can cause this, i started to slowly wean off it, and since march -21 to december -22 i went from 20 to 5, the first 12 mg were pretty easy, but after that the withdrawals became a nightmare, even with a reduction as low as 0.5 mg, i actually believe that they were up st the same level as the ones some get from benzo withdrawals, so after going from 5 to 4.5 i couldn't handle it after a few weeks and backed up to 5 mg, were i've been since. But i really have to get of this poison as well, since i'm certain that it worsens most peoples HPPD. So i'm in a real rough spot, i have three meda that i have to come off, were i believe the SSRI will be the worst, and all my hope lies in that Keppra can help me. Sorry for the long vent, but i wonder what you guys would've done in my situation (except the suicide part)? Maybe the smartest thing is to get rid of Lamotrigine first, since it's dead weight. I've already dropped it down to 200 mg. Then maybe do a CT of the last 5 mg of SSRI, beause since i get so severe withdrawals from doing it slow, it feels like i maybe just drag out the suffering and try to endure steonger withdrawals, but that hopefully only lasts for a few months. And when this is done, start weaning of the benzo and introduce the Keppra once the HPPD symptoms starts to become too much?

I wouldn't do it, because odds are that it will worsen your HPPD.

Lookingst the last sentence of the abstract, these patients seemed to have type 1 HPPD, which is a pussy disorder compared to type 2. "Given the benign nature of HPPD I, the use of benzodiazepines should be proposed only for severe cases, in the acute phase, and for the short term." There's also this: "Benzodiazepines may be useful and effective in eliminating benign HPPD I and ameliorating, but not completely eradicating, pervasive HPPD II symptoms" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5870365/

Quess i'm lucky, been on 1.5 mg for 6 weeks and it doesn't affect my memory.