So the time has come...

[vivienne]

Oh btw, 1998, I've been doing as much reading as I can regarding others getting off klonopin. It is SO strange how different it is for different people. I read one person was at the toxic level of 20mg a day because of a serious automobile accident and this person tapered rather quickly, a matter of weeks. I would be totally incapacitated. Then others just have a hard time from a far smaller dose. It's rough for me, too. Some of the doses I've read about people taking makes me stop and think, "Is that a typo?" LOL.

I may use neurontin to help the process. For me it's far less addictive, does help initially with visuals and anxiety, and also because I have indeed had seizures before during periods of illness so I can't just stop too quickly either and ride out the withdrawal asap. It's tempting just to do it and get it over with but I'm not that stupid!

[VisualDude]

I also use Gabapentin and find it similar to Klonopin. Have never taken more that 1mg / day of Klonopin. Both have minimal effect on visuals.

[zukov]

Thanks for the answers.

This monday i started to low the dose from 0.50 to 0.3,8. The next week i hope be capable of low at 0.25, now the true is i dont see changes but im a little paranoic and angry (im sure is my mind and the fear of losing control again).

Is a very low dose 0.5 for day, but like Uknowme said every person are different.

[mbellamy09]

yea ive been on .5mg/ twice a day for a 2-3 years not sure my memory is a little fuzzy. neurologist app. on monday, really looking forward to trying Sinemet and maybe try and taper off klonopin. i tried once not knowing how addictive Klono is and the doc apparently didnt and recommended .5/mg just once a day and i almost went insane. so dont know how long the taper would take or if i wanna drop of it eventually or just go down in dosage and see.

but it is weird how everyone is so diff. with how far they can drop.

[rollingregret]

Hey Merkan, how are things going with you now? Are you still on 1.5mg/day?

Was just wondering if this is what you did:

originally @ 2.25

dropped 0.25...felt pretty bad for about a week and change

then dropped 0.5 from that new stabilized point (so not really a one time 0.75 cut, but still HUGE) and didn't experience ANY WD?

If that's the case, do you think

1) the original 0.25 taper primed your body for GABA changes so that the subsequent drop (which was much much larger) already had the repair machinery going?

OR

2) Have you felt worse since your last post? I ask because on benzo.org.uk, they mention WD symptoms catching up (i.e. your 0.5 cut never fully expressed itself a week after the initial cut).

I'm trying to devise a taper schedule as I've posted in this forum. I too want to get to something like 1.5 which seems small to me after being on 3.5 for the better part of 4 years. I'm currently on a cut from 3.25 to 3 (~30hours in).

[VisualDude]

Rollingregret,

So you've been on 3.5mg for a long time. Did this fix your visuals? Or was it for anxiety?

[rollingregret]

Rollingregret,

So you've been on 3.5mg for a long time. Did this fix your visuals? Or was it for anxiety?

Never had anxiety in the panic sense, but my muscle tension and head buzz/fog/vice grip seems to be related to anxiety pathways. The clonazepam completely rid me of this + made my visuals barely noticeable. It is very true that when you don't care about the visuals, you just don't care. I couldn't understand what that meant until all the other symptoms were removed. If the visuals are associated with some other feeling, then they bother you, if they are just around, no big deal, honestly. Then again, my visuals were/are visual snow and static and floaters (after imaging to some degree, but mostly flashes and LEDs, etc.). They were vastly improved by the clonazepam.

Now that I'm tapering off, I don't know what to expect in terms of these all returning. This morning they were pretty bad, right now they're lessened. I truly wonder if my HPPD is reduced to a level such that IF I manage to come off this benzo, I will feel the way I've felt the last few years while gaining back some cognitive function (mind you it hasn't affected me that noticeably, I'd just like to think I'm smarter).

I will say this, Visual, the dose of clon (for me) did have an effect on the degree to which my visuals have been reduced. I was on 1.5 initially (4 years ago), then went up to 2, then 4 and I've been on 3.5 for the better part of 2 years and it's gotten me where I want to be. Are visuals your only symptom? I ask because if 1mg/day didn't do much for you, if 2 (hypothetically) DID get rid of your other symptoms, I'm inclined to believe that you'd perceive your visuals to be lessened.

[VisualDude]

Yes, I'm considering upping Klonopin as a test. Currently working with Keppra with very mixed results and several problems.

Actually started Klonopin 3 years ago as a 'failed' attempt to work with doctors for more accurate diagnosis. In brief (lol), the story is this: Have always had bad anxiety for whole life - so much so I didn't know I had anxiety since had never NOT had anxiety. About 10 years ago had a mild panic attack (first time) and doc gave Xanax prescription. This med was a revelation since it was the first time never suffering this kind of pain ... and it only took 1/2 pill. Throughout the years used it judiciously (about 30 pills a year) so as not to develop resistance. Also tried Valium which did nothing at all.

It was 5 years ago that I began developing symptoms, mostly visual, very much what you read on HPPD forums but not CEVs or color distortions. It was over a year later that I got dopamine agonists (Sinemet the best one) and within hours of a very low dose, symptoms began reversing. Even when cycling off for a few weeks, symptoms deteriorated only some - it seems to somehow instigate actual permanent repair.

Three years ago, got more brain injury [ doctors have explained that the immune system in my brain is damaged and cannot properly clear out toxins that people are normally exposed to in industrialized nations ]. This is when I got something like anxiety but quite unique. It had me curled in a ball 20 hours a day. Xanax was like water - 2 mg was like water. However the combination of 10 mg Valium and 150 mg tramadol enabled me to get up for a couple hours. Curious swap between effectiveness of Xanax and Valium.

In this state I literally begged doctors for 4 weeks for an anti-seizure med but they had it in mind it was just major depression and anxiety. Gave me Lexapro, which doubled the need for Sinemet and caused some nervous system damage to one pupil (mild Adie syndrome). Finally a merciful doc reluctantly gave a Gabapentin 300 mg prescription. In 12 hours (2nd dose) was stabilized, and soon was on 6 doses a day. There was no sedation at all - it gave energy.

Since Xanax is not anti-seizure, Gabapentin was specifically developed for seizure, and Valium is for both - wanted doctors to try various meds that work only with one or the other to further verify the nature of the problem. However was given Klonopin 0.5 mg twice a day (Klonopin was developed specifically for seizure though it is commonly used for anxiety - rather a wash for diagnosis purposes). Its effect was to smooth-out/complete the benefit of Gabapentin.

Four years ago asked a doctor about HPPD but was told it couldn't be since have never used recreational drugs (one doctor joked that my problem is I need to smoke some pot). Only last spring a DP forum member recommended some HPPD sites and the symptom list is too close to ignore. Furthermore, Dr Abraham says on his site that, though rare, people can get HPPD outside of drug use.

As far as what Klonopin and Gabapentin have done for visuals, it is limited to mainly reduced 'visual pain' and being startled by movement in peripheral visual field. It also reduces a white-out effect (lack of black), which at times is taken care for by Sinemet. Ironically, muscle pain and tension throughout my body is helped more with Sinemet than with these other two - even though Gabapentin is specifically for nerve pain in the body. Your post caught my attention in this regard.

So this is the history of Klonopin - it was never given as treatment for HPPD. Nor in high amounts. So taking more is a new consideration for me. In general all meds that I've taken have worked so well that less is needed, not more. (Sorry this is so long winded but it is hard to put meaning into a post without some details)

In order to help other members, am hoping over the next few years to isolate which symptoms are largely dopamine related and those that are other. It is clear that some of HPPD symptoms are brain overactivity - the domain of anti-seizure meds. It is also clear that some symptoms are problems with dopaminergic neurons. Likely, in time, other meds will show their hallmarks for this brain disorder.

Since Klonopin has worked for you so well, why discontinue? Is it just that you feel cognitive reduction?

[rollingregret]

Yes, it indeed sounds like you have non-drug induced HPPD. I don't see why what's perceived to be rare since many people develop anxiety and depression on their own, while recreational substances cause deregulation of the same systems. As yet, we have not yet identified the markers that make us susceptible to HPPD or if it's purely situational and random so I can completely see why your serotonin system (responsible for HPPD) has been altered to cause these symptoms. I've been reading withdrawal boards for about two weeks now, so often I read posts in ALL CAPS PLZ GET OFF THIS DEVIL DRUG ITLL KILL U and other ones that make the same point. I therefore am wary to ever speak good of clonazepam even though for me it HAS been a saviour and I was able to get to a dose at which I didn't develop tolerance.

At this point I have a general question: When we assume that our brains are healing from the HPPD insult, which can take months to years, is it blocked by the presence of clonazepam? I would think not since the system is being returned to it's pre-HPPD level of activity (reduction in hyperactivity of serotonin receptors), but perhaps there's some other insight. What I'm wondering is whether over the course of being on clonazepam, whether my brain was able to plastically repair the damage that had been caused, leading to my previous question of whether I'll be HPPD-free (or maybe 80-90% reduced) once I come off, 4 years later.

Visual, I'm purely coming off because my doctor doesn't want to prescribe it anymore and the government is being more strict about the administration of benzos.I don't really see WHY this is a problem, but doctors are often more concerned about themselves than what's best for their patient. Thankfully, I'm not completely opposed to it since I'd like to get to a lower dose with the hope of one day not having to take these. I don't like the idea of being dependent on them but ONLY if they aren't doing anything for me anymore. I can't tell whether that is, in fact the case. Maybe I still need them. My cognitive reduction is, again, subjective and to the point where I can certainly carry out complex mental tasks BUT one always wants more of their mental faculties, so even if it's slowing my thought processes down by a small %, I'd like to reclaim that. Again, ONLY if the benzo is not doing anything for me. Big ? there.

I would cautiously advise trying an increased dose on klonopin if you can rid yourself of the other drugs. I found a big difference when I doubled it and your symptoms sound a lot like mine. Let's hope your doc agrees if you decide to do so. "Should have smoked pot"....the HPPD-ignorant never fail to amaze me. It shows just how modern medicine is taught out a textbook and does not integrate dynamically with actual patients and complex disorders. Well, at least the ones with the drug stigma attached to them.