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