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Tried to lower dosage, haven't "stabilized" in over 8 weeks...what to do?

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So for everyone who doesn't know my recent story:


It pretty much chronicles how I've gone from thinking my taper was going ok, to where I am now - not stabilized at a lower dose and out of my mind

Cliff notes:

was on a stable dose of 4mg/day for the better part of 3 years (tried a lower dose the first year, but only helped about 60-75%)

In March 2011, cut from 4 to 3.5, experienced WD, came back to baseline (i.e. feeling great) within 10 days

Doctor told me to cut in December 2011, 0.25 every so often.

I cut from 3.5 to 3.25, had WD but by day 10 thought I had recovered

Cut from 3.25 to 3, had WD but by day 10 thought I had recovered

Cut from 3 to 2.75. Stayed at this dose and waited for the expected return to baseline. It's been over 8 weeks and I feel totally out of it, spaced out, dizzy, head pressure, "pain" when I try to concentrate, balance issues when I chance my point of focus. I guess these are dissociative symptoms and I feel like (as described by 1998) like I'm on a dose of acid (although never tried it). I don't care much about my visuals as I've gotten used to them but the physical symptpoms are simply unbearable. FTR these are the hallmark features of my original HPPD which were completely cured by clonazepam at 4 and even 3.5mg/day.

I should say that the muscle tension that I experience during the first 4-9 days of a cut are at the level of my original HPPD. Then it just fades into this head craziness. I've waited and waited and waited. No return to baseline. My intention was to lower my dose, but now I'm thinking I've crossed the point where 2.75 just isn't doing it for me anymore. The other possibility was that my HPPD was pretty much gone (or manageable) and that I just needed to get through clonazepam withdrawal on the way down.

What should I do? If I just try to get off clon (and in the process screw up my life...I'm at a VERY important juncture right now), what if I still have this unbearable HPPD that was being treated very effectively without tolerance at 3.5 (and MAYBE 3.25 or 3)?

How do I know whether what I'm feeling is clonazepam WD or simply my HPPD resurfacing? I know many on this board have been proponents of clon working for them for a number of years without tolerance (as was the case for me). I just need to know whether I still have HPPD or not (is it the WD, or is it relapse).

1998 has been super helpful in being able to relate to me and he went through something similar from his 3.5 to 3.25 jump wherein he stabilized after a month (stabilize = return to baseline). People on benzo buddies suggest that going on 9 weeks is a long time to require your GABA receptors to catch up and that you'd have to get off completely to heal. They, however mostly (actually I think maybe one other person) do not have HPPD, thus when they are getting off the drug, they are doing it cuz od tolerance or they have bad side effects (neither the case with me). Thus them coming off the drug WILL get rid of the symtoms i have now because they don't have HPPD, they have anxiety mostly.

Many people have given me their input in the thread above, but now it's pushing on, as I said, week 9 and I'm wondering what everyone thinks now about my situation. Thank you so much for your help, I really need some good HPPD-based advice. David, I know you've had your experiences with klonopin, your take would also really help.


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  • 4 weeks later...

Hey again guys, hopefully you can help me, I'm really having a bad time.

My taper from 3.5mg to 2.75mg/day has not gone well. Since then I dose corrected to 3 to see if it would be enough. That was 3 weeks ago. I should mention that this entire taper was enforced by a clinic doctor who took over my file last March and has (and still does not) no understanding of HPPD.

I went to see her this morning to tell her that I'm still feeling like crap after increasing to 3 and because I have an important academic event coming up, I can't afford to needlessly be going through hell (it's been since December).

She told me she did an internet search on HPPD and "discovered" that HPPD never lasts for more than 2 years so what I'm feeling now is 100% benzo WD and not the continuation of my HPPD, which was previously treated perfectly with 3.5mg.

a) even if it was WD, which it's not, given the MONTHS (read 4!) that I've waited to stabilize, it's clear that to properly taper I would have to correct to a comfortable dose and go from there. Not acc. to her as she is truly clueless.

B) WTF kind of half-ass doctoring is that to claim that HPPD apparently goes away within 2 years max! I have it pretty bad and I only got on clon after 1.5years of having it, pretty close to the "2year rule"!

Anyway, I'm 0.5mg below my known stable dose of 3.5 and after a taper that has scrambled me (so the cumulative drop could still be more than 0.5mg). She said she's going to refer my to another psych who can decide to prescribe me clon, but she won't do it. What is THIS psych going to know. I've already seen enough to know most of them do not respect HPPD and I cannot understand the logic of these people. I myself would rather be on the lowest effective dose, but it's clear after 4 months that 3mg is not it. The longer I go not being "contained", the greater chance I'll develop tolerance. Basically, I'm screwed.

Do you think that there is any way that my brain will adjust to this 3mg dose given it's been 3 weeks already since the dose correct from 2.75? I really feel like it's plateaud and I'm still not quite where I should be.

There is one glimmer of hope: I am going to see Dr. A at the beg of April (doing the trial as well). Now I know some individuals have strong opinions regarding his ethics and what not. Personally I don't care that I have to pay that much IF he's able to give me a diagnosis that convinces these quacks that HPPD can be a chronic disorder. Whether they then chose to act accordingly is a different story. Of course the doctor never read his papers on how 50% of people recover. It's in a freakin' journal. Doctors, can't live with 'em, can't get a script without 'em!

please help.

'98 I know you said coming down you've taken 5 weeks to stabilize and we've discussed what might be going on with me. Is there a chance going UP might take 5 weeks?

David, you have experience with this. Advice?

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  • 2 weeks later...

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