How many are using clonazepam / klonopin successfully? & for how long have you been using it? What dosage? Do you have to up the dosage every now and then?

[MIZU]

Would really appreciate some answers  

[Jay1]

I think around 15 years now.

I generally take between 0.75-1.5mg 3 or 4 consecutive days a week, then have 3-4 consecutive days off. I occasionally have a week on if i'm on vacation. I occasionally also have 2 weeks off, to clean the system. I once had 6 weeks off during lock down to really test any signs of addiction/withdrawal... all was ok. 

So far, no withdrawals and no noticeable tolerance 

[joegives]

I really wish I tried the 4 on/3 off method...but I went on it fulltime and now my withdrawals are hectic when I try to drop down. On 1 mg. Still on it after about 9 months, feel a bit trapped.

[Hall89]

On 6/8/2023 at 3:53 AM, joegives said:

I really wish I tried the 4 on/3 off method...but I went on it fulltime and now my withdrawals are hectic when I try to drop down. On 1 mg. Still on it after about 9 months, feel a bit trapped.

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?

[Hall89]

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!

Edited June 13, 2023 by Hall89

[JH Psychedelic]

Hi all

Just a plug for our survey study which includes thorough analysis of treatment efficacy. We would very much appreciate your participation if you have feedback to share on efficacy or lack thereof of different treatments. Info below!

With gratitude,

N

Johns Hopkins survey on HPPD: Help us uncover new insights into the condition and its treatment

Researchers at Johns Hopkins are conducting a survey to better understand the experiences of people with HPPD (Hallucinogen Persisting Perception Disorder). HPPD is a condition where people who have used hallucinogenic drugs experience ongoing visual disturbances, such as seeing halos around objects or seeing colors more vividly. This survey will ask about risk factors, symptoms, treatment experiences, and how HPPD has impacted your life. Your participation in this research study can help improve our understanding of HPPD and lead to better treatment options for those who are affected by it.

www.HopkinsPsychedelic.org/hppdsurvey

Protocol: IRB00384491, Principal Investigator: Natalie Gukasyan, M.D.

[brake]

3 hours ago, JH Psychedelic said:

Hi all

Just a plug for our survey study which includes thorough analysis of treatment efficacy. We would very much appreciate your participation if you have feedback to share on efficacy or lack thereof of different treatments. Info below!

With gratitude,

N

Johns Hopkins survey on HPPD: Help us uncover new insights into the condition and its treatment

Researchers at Johns Hopkins are conducting a survey to better understand the experiences of people with HPPD (Hallucinogen Persisting Perception Disorder). HPPD is a condition where people who have used hallucinogenic drugs experience ongoing visual disturbances, such as seeing halos around objects or seeing colors more vividly. This survey will ask about risk factors, symptoms, treatment experiences, and how HPPD has impacted your life. Your participation in this research study can help improve our understanding of HPPD and lead to better treatment options for those who are affected by it.

www.HopkinsPsychedelic.org/hppdsurvey

Protocol: IRB00384491, Principal Investigator: Natalie Gukasyan, M.D.

I took this survey. It was a good survey. When will the results be released?

[help123]

I m taking 2 mg of clonazepam everyday for a few months,it helped me with some of the symptoms but some symptoms increased

[joegives]

On 6/14/2023 at 3:30 AM, Hall89 said:

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?

Mainly because it has paradoxical effects for me. It helps some symptoms while giving me new symptoms. But when I tried to go off it (only after one month) it increased my symptoms to much higher than they were before I started taking it. Now I'm like 9 months in and I'm like...I just don't want to be on a hectic drug like this my whole life - it's fucking shit for my memory and makes me depressed as well...

[Hall89]

On 6/19/2023 at 10:29 AM, help123 said:

I m taking 2 mg of clonazepam everyday for a few months,it helped me with some of the symptoms but some symptoms increased

Which symptoms increased?

[joegives]

4 hours ago, Hall89 said:

Which symptoms increased?

It gave me some more psychedelic-type movements and shifting forms that I could see on the walls if I stared at them for a couple of seconds, while muting some of the annoying peripheral movements which is my main symptom. that was at 2mg. At 1mg, it simply reduces my peripheral movement mildly (but it's lost a lot of its effect, and it's certainly not reduced to a point where I'm not severely tormented by them). 

 

I'd say I'm not a typical case though - I have BFEP - but that's the only symptom that seems to fit in with everyone else's classic symptom list. Oh and afterimages - but they never really bothered me/I never noticed them as being that big of a deal, which is why I kept using drugs and eventually gave myself full-blown HPPD

Edited June 22, 2023 by joegives

[Hall89]

On 6/22/2023 at 2:24 PM, joegives said:

It gave me some more psychedelic-type movements and shifting forms that I could see on the walls if I stared at them for a couple of seconds, while muting some of the annoying peripheral movements which is my main symptom. that was at 2mg. At 1mg, it simply reduces my peripheral movement mildly (but it's lost a lot of its effect, and it's certainly not reduced to a point where I'm not severely tormented by them). 

 

I'd say I'm not a typical case though - I have BFEP - but that's the only symptom that seems to fit in with everyone else's classic symptom list. Oh and afterimages - but they never really bothered me/I never noticed them as being that big of a deal, which is why I kept using drugs and eventually gave myself full-blown HPPD

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?

[joegives]

6 hours ago, Hall89 said:

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?

All of these meds were started after I got full blown - I never needed them before.

I'm on lamotrigine - I don't think it does anything...or at least what it does is very minimal. I'm also on reboxetine and mirtazapine - both of which don't help my mood as much as exercise does. I'm in the process of coming off reboxetine and mirtazapine.

The clonazepam does something - or at least it did - at lower doses like 1mg which I'm currently on. But I want to come off it, because it gives me erectile dysfunction. Not nearly as badly as the reboxetine (it's so, so bad for that for me at least. Also gives me premature ejaculation). The clon also gives me memory issues.

[Hall89]

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.

Edited June 28, 2023 by Hall89

[Jay1]

On 6/28/2023 at 2:22 PM, Hall89 said:

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.

Why are you limiting yourself to three meds before giving up? The two meds you have tried have both had some success. Even if the third doesn't, there are a multitude of meds that have helped HPPD sufferers with some degree of success or other.

Please keep fighting, Jay. 

[Hall89]

12 hours ago, Jay1 said:

Why are you limiting yourself to three meds before giving up? The two meds you have tried have both had some success. Even if the third doesn't, there are a multitude of meds that have helped HPPD sufferers with some degree of success or other.

Please keep fighting, Jay. 

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?

[Jay1]

Yea, used to be 100s per day on here.. I guess they are mainly on Reddit now (Which I found to be a cesspit and had to leave). 

Glad to hear you still have the energy to keep on fighting and trying other meds, if needed. 

Would be interesting to see if the sedating effects of clono come back if you do move to a 3 on 3 off approach. I feel like even a 5 on 2 off might be enough of a gap to fend off the worst of the tolerance and withdrawal, as long as the 2 days are in a row and you take the next dose as late in the day as possible. That is purely hypothetical though, so obviously tread carefully if you do try.  

[Hall89]

On 7/1/2023 at 11:00 AM, Jay1 said:

Yea, used to be 100s per day on here.. I guess they are mainly on Reddit now (Which I found to be a cesspit and had to leave). 

Glad to hear you still have the energy to keep on fighting and trying other meds, if needed. 

Would be interesting to see if the sedating effects of clono come back if you do move to a 3 on 3 off approach. I feel like even a 5 on 2 off might be enough of a gap to fend off the worst of the tolerance and withdrawal, as long as the 2 days are in a row and you take the next dose as late in the day as possible. That is purely hypothetical though, so obviously tread carefully if you do try.  

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?

Edited July 3, 2023 by Hall89