Hall89

Yeah, it's horrible on Reddit, especially with the new moderator Sophie, that for example have banned any talk about Clonazepam, even though it's the most effective treatment. Yes, it comes with risks, but it should still be allowed to be talked about and people should then be able to make up their own minds. I believe that the temporary worsening i felt wasn't because of Clonazepam tolerance, but me trying to decrease my SSRI dose a few days prior (from 5 mg to 4,5 mg of my Citalopram). But since i've been on it for 14 years i doubt that i ever will be able to come off it, atleast not with severe long lasting withdrawal symptoms and possibly worsening of my HPPD. I've read about quite a few in SSRI withdrawal groups were they have actually gotten HPPD visuals after coming off it. I started tapering from 20 mg just two months after i got my HPPD, but i've decided to just stay on the 5 mg for the rest of my life, the risks are too great, and it's not certain that those receptors ever could function normally again, especially with HPPD, were atleast the 5HT2-a already seem to be messed up. I talked with a guy just yesterday that jumped on an SSRI when getting his HPPD, it didn't have much affect on it, if any, but now he has weaned off it and his HPPD is the worst that it's ever been. Anyways, after ~6 weeks on 1.5 mg i dropped to 1.25 mg 5 days ago without any withdrawals or any worsening of HPPD symptoms, so i will drop to 1 mg in a week and just stay there and maybe try the 5 on and 2 off, but if i'm going to do something fun, like going on a weeks vacation, i will temporarily up it to 2 mg the first 5 days, then jump back down to 1 mg. But that it's effect on my regular/normal anxiety is pretty much gone and the sedating feeling, but still keeps 90% of the non-visuals gone i see as a good sign, because that means that i've already built up a tolerance for what it's usually prescribed for, but it still does the job for those HPPD symptoms, too bad that it doesn't do anything for the static though, but after 2 years and 4 months with them, i've somewhat gotten used to them, even if they're in the back of my head all the time, but i'm grateful as long as i don't have the non-visual symptoms, because it's those that would drive me to suicide, or well, unmedicated i barely have any functioning peripheral sight either/tunnel vision, which is horrible. Anyways, now at 1.25 mg i feel like i did when Lamotrigine had it's best effect, that is, all non-visuals gone, except som mild derealization (10-15%) and anxiety, but i do believe that it has some affect on my BFEP and it definitelly decreases the time that afterimages stays around, the tracing has improved as well. PS, do you split your dose up and take it twice a day, or all at once?

You're right Jay, thanks! I'm on week 7 now and it do still have a pretty good effect and keeps like 85-90% of the non-visuals away (except after exercise, like 70% then), but the sedating feeling and effect that it had on my general anxiety is pretty much gone, so i quess that can be a good sign? I mean, i've reached a tolerance for it's main purpose, which is to kill anxiety, but it still works for the HPPD. anyways, i will go down to 1 mg and see how it is there, and then maybe start 3 on and 3 off, but i'm having a meet with my doc in 3 weeks, and maybe she want's me to increase the dosage. I'm grateful btw, because after two years i've finally gotten a doctor that's taken an interest in HPPD and is open to prescribe meds off label, so there's more to try if Clona goes to hell, like Lyrica, Valproate, Keppra and Brivaracetam, but also Topamax, which shares many of the mechanisms that Lamotrigine has. So i will fight on for my loved ones and keep trying different meds if clona fails, but i have a feeling that it will be a rough road with potential withdrawals and side effects. I haven't started to taper of my 300 mg of Lamo yet, but my gut feeling tells me that it will get pretty rough in the lower dosages and will probably aggrovate my HPPD temporarily, like how benzos seem to do it. But Clona seems to work a long time for many. I talked with an old member here that's been on 1 to 1.5 mg daily for 11 years, and it still keeps his dpdr and brainfog away, also slight improvements to his visuals. Which is lucky asf! PS, it's so sad that this forum isn't more active, it used to be back in the day, right?

A small update, after ~5-6 weeks on 1 to 1.5 mg my body is already building a tolerance and the non-visual symptoms and small improvements that it did to my vision is slowly coming back. So now i have a tolerance to both Lamotrigine and Clonazepam... The last card i have up my sleeve is Keppra. If that doesn't work i've atleast try to do everything i can for my close ones, because there's no life to be lived with the severity of my HPPD.

Anyone here that's been on Clonazepam daily for years with maintained effect? Also, no way that Lamotrigine and Keppra has "cured" HPPD, or not type 2 HPPD. Sure, they can reduce the symptoms, but from what we know, there's no cure. If this has happened for some, my quess is that it healed out on it's own during the treatment, but not because of it, and that these people had a mild form of it.

That's wierd, have you tried Lamotrigine? Which symptoms do you hsve now? Visual and non-visual ones? Have you tried Clonazepam now when you have it full-blown?

Which symptoms increased?

I've been on it for a month now and it has saved my life. At first i did Jay's regimen, but after a couple of weeks i said f**k it and started taking it everyday, some days 1 mg and others 1.5 mg. It removes 90% of the dpdr, brainfog, uncontrollable anxiety and all of the head pressure, tunnel vision, hallucinations and vivid dreams, it also has a small effect (~10-15%) on the vs, bfep and tracing, not the other visuals though (afterimages, ghosting, floaters, halos and starbursts). I'm certain that they would improve more at a higher dosage though, but i'm ok at my current, so i'll stick to it. Prior to Clonazepam i was on Lamotrigine, and it had pretty much the same effect on the non-visual symptoms above, tunnel vision and hallucinations, it didn't do anything for the rest though, or maybe ~5%. So if the non-visual symptoms are the worst for you, try Lamotrigine first, since it isn't near as addictive, and some have actually had some decent visual improvements with it as well. The reason i had to start Clonazepam was because my body built up a tolerance to my Lamotrigine, so it was either that or suicide. So i really pray for myself and my close ones that it doesn't stop working as well, because then i'm fu**ed!

I don't know how severe your HPPD is or if helps you as much as it does for me, but if it's anything near mine and it does, i don't get why you would want to get off it?

Damn! How long have you been on klonopin and such a high dose? Anyways, i hope that you get the help that you need!

It is! Yeah, it's crazy! But it happened to the people in the study as well. But this will be my last resort, i still have Keppra Gabapentin, etc to try. But living a life with all the visual symptoms, which are at a 10/10 for me on top of all the non-visual ones is a death sentence for me, since every day is pure torture.

I don't believe, or i'm certain, that severe type 2 HPPD can't go away, nor does Abraham if you look at his site. Maybe mild cases were the person don't get any non-visual symptoms, but for us that got severe visuals, head pressure, brainfog etc i'm 100% certain there's no hope.

Has anyone here had success with Clonazepam and been on it for years with the effect remaining? I am well aware of the risks with benzos, so no need to warn me. It's just that i've come across a few people saying that they've been on 1.5-2 mg a day for years, and that it still keeps most of the symptoms away. So i'd love to hear from more doing it before taking this risk myself. I still have Keppra to try, but if that doesn't work i'm left with no other choice if i want to be functional and not endure an absolute torture every day. And no, it's highly unlikely that their HPPD had "healed" with time and that it just occured when they were on it. Severe type 2 HPPD is afterall permanent, or atleast according to Abraham and from what i have gathered, or stleast most of the symptoms.

And another reply! I talked with a guy from Australia a couple of days ago, he got severe HPPD ~11 years ago, but he had no idea what had happened to him, he even tried ECT treatment, but then he met with a psychiatrist that diagnosed him with HPPD and prescribed him Clonazepam based on the study discussed here. After 3 days on 4 mg 95% of his symptoms were gone and he stayed on that dose for 10 years without them coming back, so then he weaned of it over 1½ years and the HPPD didn't come back. Later on he smoked a joint though and everything came back, so now he's back on Clonazepam with the same effect. If Brivaracetam doesn't help me as Lamotrigine did, i will give the Clonazepame treatment a go, because i don't have anything left to lose.

As some of you might have read, i got on Lamictal 2 years ago and it saved my life, because it took away all the non-visual symptoms and hallucinations, except the mild dr. But now my body is building up a tolerance to it, and since i responded so well to this, do you guys believe that i will do that to another anticonvulsant like Keppra? They both inhibit glutamate, but through different mechanisms, also has an affect on GABA, but different mechanisms there as well. Or maybe brivaracetam, which is the newer version of Keppra would be a better choice? It's apparently much more potent.

That's sadly not true, even on his own homepage he states that HPPD is permanent. See below: "The patients that I was studying, on the other hand, described continuing visual disturbances that had lasted for many years from their last use of LSD. Either this was a condition that could slowly reverse in time, or HPPD, which had yet to be named, was permanent." https://www.henryabrahammd.com/the

Does anyone know if the patients had type 1 or type 2 HPPD?

Sure! I had been struggling with chronic pain for a few years and insomnia a year before the HPPD, so i ended up trying to self medicate with cannabis (homegrown royal cheese strain). I got a but tired, went to bed and the day after i woke up with full blown HPPD, that is: * Strong head pressure. * DPDR. * Greatly affected cognition/brainfog. * Regular panic attacks and 8-10 anxiety all the time. * Extremely vivid dreams, every night was like a horror movie. * Tinnitus (2 weeks after onset) * Regularly seeing visual pseudohallucinations (around 4-5 days after onset) * All the typical VSS visuals, that is, real bad vs, halos, starburats, palinopsia, floaters, bfep and ghosting. First three months i was bedridden 90% of the time, then i was prescribed Lamotrigine by a psychiatrist and it took away the hallucinations and non-visual symptoms except the tinnitus, so i became functional again. And no, i could barely eat with all those symptoms, so if they were to come back i'm done, because that's no worthy life. Yes, most people have problems, but in the vast majority they PALE compared to full blown HPPD, they don't even come close. So as said, i might as well had gotten an untreatable cancer diagnosis, the outcome will be the same if i can't continue to treat this. PS, i had never done any other recreational drug than alcohol and weed prior to that

Yeah! I increased the lano dosage by 50% around 5 days ago after consultation with my doc, it feels like it's having a small effect,so hopefully it will go bsck to how it was in the coming days, but the problem is that the body will build up a tolerance to that as well, so no matter how you look at it,my life is coming to an end. My last try will be going on 2 mg of Clonazepam at a daily basis and see if that can cause some miracle. But i've literally lost EVERYTHING in my life to this, the love of my life and fisnceé for 6 years, our dogs, job, interests, mental health and i'm now living in a room at my moms which is kind of sad since i'm 33 years old. God this world is unfair, how a few hits of weed can lay waste to an entire life is crazy.

Sadly full blown HPPD is anythinh but just a shitty vision, it's the non-visual symptoms that's the worst, like dpdr, crippling anxiety, head pressure and brainfog. When Lamo took those away and i "only" had the static, halos, starbursts, palinopsia, floaters, bfep, ghosting and tinnitus i did ok, but living with the others on top of that is no life, it's a daily suffering that's hard to put in words.

May i ask what symptoms you have?

It saved my life because it kept the dpdr, head pressure, decreased cognition, visual hallucinations and tunnel vision away, also decreased the vs some. And yes, to me it is life threatening, because i rather be dead than living like a half blind vegetable with uncontrollable crippling anxiety every day, that's outright torture. So this diagnosis is for me as bad as an untreatable cancer diagnosis, and right now i don't know how long i have left until it's all back, and then there's benzos and alcohol until the body give out.

The chances of getting that is lower than 1%.

What makes you think i take any drugs? I haven't even touched alcohol since getting this, and before that i only tried cannabis a few times, which is what gave me HPPD. And quit Lamotrigine? Did you even read the thread? It's the only thing that's kept me alive because of the symptoms that it took away.

So, got on Lamotrigine about 2 months after my onset and it saved my life, because it took away the non-visual symptoms, hallucinations, tunnel vision and stabilized the others some. The past two months these have started to surface again and i see my life coming to an end. I'm in the process of increasing from 200 mg to 300 mg in hope of buying me some more time, i also take some benzo to temporarily help me. Anyways, since i responded so well to Lamotrigine, do you guys believe that i will do it to Keppra as well? I'm dead serious when i say that i will not live a life with full blown HPPD, every day was torture with it, especially because of the out of control 10/10 anxiety.

I read some about it and it has some neuroprotective effects, inhibits glutamate and increases GABA, so has anyone tried it for HPPD? https://psychopharmacologyinstitute.com/publication/lithiums-mechanism-of-action-an-illustrated-review-2212