rollingregret

Good points -mg, you have a sound understanding of my predicament. The last week has been a lot better. haven't had any depression or heart clenching anxiety -- more or less the dizziness. I haven't really even had that much muscle tension, so really it's just the weird feeling in your head and not feeling relaxed like a normal person. That said, who knows what next week will bring. Is it that Gabapentin increases GABA (the raw material) or that it binds to GABA-B receptor sites and modulates them allosterically? I've read that just increasing GABA doesn't do much to help the situation as increasing the amount of power to a blown fuse is pretty useless. Could be wrong. I would say as it relates to tapering, the first goal is to get back to a normal quality of life (fully stabilize). Yes, I'm functional, but it's below where I need to be to be both effective in life and happy. Lingering symptoms are so hard to deal with. Add that to the fact that one doesn't feel like socializing due to discomfort (the head swirls are a major pain) and that thinking intensely can aggravate symptoms, and it should be apparent why I'm really hoping to get to a stable place. I am certainly going to look into Gabapentin. A big problem I face (and it may sound strange) is that I think my job prospects are finally turning the corner after many months of sending out resumes and making contacts. I might have an influx of offers soon and I am so terrified of returning to a high paced, intense environment which makes the regulars take Xanax PRN! FIrst I've heard of quinidine. I guess you're saying it helps all the gaga supplements cross the BBB more efficiently? Being in research myself, what I would give to have the opportunity (and massive funding) to investigate the mechanisms of receptor dowregulation and develop methods to combat it/promote upregulation or expression of additionally injected receptors. Stem cells could be involved, but also things as simple as transcription factors (essentially proteins) being used as switches to control the regulation of the receptors. There are already documented mechanisms of tolerance, but not so much in the way of treating it or actually detecting it in individual patients. Not to get too political, but a republican victory (purchased of course) could be disastrous for all medical research (I remember doing research during Bush's days). Forward!

I'm actually just trying to stabilize after cutting from 3.5 to 2.75 in 30 days (0.25/10 days). This was Dec2011. My symptoms got really bad by the end of december and then my doctor (who was forcing me to cut) didn't believe in HPPD so she wouldn't let me "correct"/updose until I got a diagnosis from Dr. A (in April). It was too late and my system has not been able to stabilize ever since despite going back up and now even above the original dose. I'm at 5mg now. The wd is protracted, but usually when one talks of that it refers to a situation when someone has gotten off completely, not someone who tried to cut, got symptoms, stopped cutting and never stabilized. My hope is not really to get off klonopin. If I'm able to get it to work the way it did before cutting that 0.75, then I'm fine to take it for life. Obviously my system has changed since then and tolerance may have developed by messing with my receptors. For this, I am infinitely pissed with my doctor since the drug worked perfectly for me for years. She was just benzo-phobic. So, to address your question - i don't want to stop them at all, I just want to stabilize, but it's been 10 months of either holding or increasing from the point when my taper went bad. 5mg is quite a lot BUT if I need 6 or 7 and that will hold me for good (so long as I don't get forced into a rapid taper again), then I'd do it. Unfortunately, my doctor's actions seem to have made my system insensitive to klonopin or more tolerant + higher doses increase the chances of side effects like depression. Very disheartening not to know what to do.

Hey Mike, Dr. A isn't my pdoc, I visited him (twice now) in the last year -- the first time to give me an official diagnosis of HPPD so my new doctor back home (who had forced me to cut my benzos cuz she didn't believe in HPPD), the second time to ask his advice about why I was stuck in wd even though I stopped cutting when it got bad. As I mention in my OP, he said that he's never heard of benzo wd and that what I was experiencing had no basis in it. As you pointed out, his views on the matter are very questionable (to put it lightly). The benefit of seeing him the first time was that with the official diagnosis, my doctor stopped trying to cut my benzos since I needed them to treat HPPD. I had no reason for cutting them except that she didn't believe in HPPD. Talk about being between a rock and a hard place! Right now I have no idea what to do. My symptoms aren't as bad as they were when I was in full out wd, but a) I am nowhere near ok and i've developed anxiety and bouts of depression which I never had. My system is screwed beyond belief. I don't know whether time will settle my system down or whether I need a new higher dose to treat my "aggravated" HPPD+benzo-wd mediated GABA receptor irritation. I don't think any pdoc would know what to do in this situation and my doctor isn't even a pdoc, just a GP. So many unknowns. Some people just get better 4-5 months after returning to their original dose, some people never get relief when trying to updose after a bad benzo cut, some people add on more drugs to help. I wish I knew how to see a pdoc who really did "get" everything. Neither Dr. A nor my current doc fit that category and in general pdocs don't seem to have a good idea of what to do/push drugs/are phobic of certain drugs. Huge mess. Just want my life back. I do kind of agree with the 300 bucks for help thing. There's so much you can cover in a session with him asking you questions and dictating the pace and when it results in "You're obsessed with benzo wd, but it's not real", it's pretty frustrating when that's EXACTLY what's happening. He said regarding benzos "I know more than you do", which really shook my faith in him because to make that statement and deny that cutting a benzo and the direct result being wd symptoms that you've never felt, is not connected...well...I don't know about the knowing more aspect.

Glad you've not disappeared, 98. Ipadgirl, what he said is right about benzo boards (as in the anit-benzo ones). They sent me into an unenviable spiral so be careful with them. The good: You went back on within four days. It'll take your system some time to get back up to how you felt before, but not long. As for your plan, it seems like you're cutting by 33%, then 50% and then jumping from a reasonable dose, each time and with only two weeks in between. Take it from me, don't rush it! Take 3 months if you can. Curious as to why you want off so quickly? Are you having negative side effects? I tried to get to a lower dosage at a rate of 7% every 10 days for 30 days and it f'd me up (that was 10 months ago). Are you getting the generic or the brand? I know in Canada, klonopin = rivotril. Oxazepam I think has the same name (generic to brand). BTW, how is your doctor acting regarding your benzo use? What province do you live in. It's a bitch in Ontario after the new regulations (which caused a new doctor to force me off). Don't let that happen to you. Go slowly and you won't have any problems. Also, since you still don't feel like you stabilized after getting back on, I would suggest not cutting until you feel perfectly fine for at least 2 weeks. Let us know how it goes. RR

really sorry to hear that 98 (if you read this). Don't forget that when things were going bad for me (as they still are), you always gave me hope that things would stabilize. As you know, since the horrible cuts and protracted wd, I've been going up to no avail. I can tell you that I also experienced paradoxical reactions, symptoms that I'd never had (anxiety and depression), but I think it's more of a response of the GABA system. They aren't persistent and many have gone away. Even though you're getting more panic attacks right now, it doesn't mean it will stay that way. Give it a few weeks and I think you'll see a positive result. I'm still not sure what to do since I think I de-stabilized myself with those drinks a few weeks ago, just when things looked like they had turned around. I COULD increase, but I've found that the more time you give even an INCREASE in dose to work, the better chance it can have as opposed to increasing. Let your system get used to the new dose. I know nothing of Tramadol, but having additional drugs complicates things (the reason I don't want to add Gabapentin or SSRIs). There must be a dose for both of us (and it's fair to say we've had pretty similar experiences) that works. Yes, tolerance is considered unavoidable, but I do also think that for those of us who have severe issues (that require high doses), going up doesn't necessarily indicate that we are a lost cause. As long as you can be functional on it. Waiting to stabilize is torture. Right know I have dizziness and muscle tension, but yesterday I had none, rather semi-depression. Things are changing, I'm just going to give it time. Please don't feel so down, we will both get better. Enjoy your new phone. Gonna assume it wasn't a Samsung

Forgive my ignorance 98, what did you mean by Top? You mean you posted from your phone but without seeing a screen (or you mean a smartphone). I think since my idiotic consumption of alcohol ~2.5 weeks ago, I've been getting slightly better, but nothing awesome. I know it only affects you for 2 days, 98, but I think with my case my GABA system is raging and it takes long for it to take a chill pill...or should I say, to respond to a chill pill. Mikezero: I know this may sound pedantic, but I truly believe your symptom will disappear/you won't notice them. This does take a certain attitude, but it's like a switch. Of course it they are super intense, it's hard to ignore, but for example, my visuals have always stayed, but once I got rid of the physical, the visuals didn't matter at all. They absolutely became part of my normal reality. Many people before me told me the same thing and I couldn't fathom it, but it's true. The fact that it's purely visual leads me to believe that you don't have a super serious case (but def HPPD nonetheless) and that recovery will occur. As far as visuals go, not paying attention to them 100% makes them go away. Takes practice and time. All you need to know is that you'll be fine, but to stop waiting for it. The sooner you can adopt that philosophy, the sooner they'll go away.

Interesting, a_postal, this is why I wonder about adding more meds to my script. What's your klon dosage now? The one thing about your situation that I think might be different for me if I used it (and is for those who do currently) is that it's meant to be taken every day, not sporadically with the effects lasting a few days after a dose. I wonder if what you experienced was some sort of GABA-type withdrawal every time you took the gapapentin and then stopped. That said, thanks for the warning, cuz I would hate to add something that has a large dependency issue in addition to my already faltering klon/messed up receptors.

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Visual, what you said just above is right. If i need 5mg the rest of my life, so be it. I have no problem with that. That's why when I was on 4mg for 3 years, I didn't think twice about it and I was actually able to lower the dose to 3.5 with little issue. The problem has been this new facet of the benzo - i.e., it not working after the cuts and subsequent updosing. That was my main concern, that I couldn't find a dose to get me back to the place I need to be the rest of my life. It has been a weird feeling since klonopin has worked perfectly until trying to reduce it. It introduced me to the concept of benzo wd, which I didn't even really know much about after 4+ years of use since I had such good results AND reprieve from HPPD. Anyway, here's an update. I went up to 5mg on the 24th of July. By the next week, I felt muchhh better than I had in 9 months. As if I had reached the stability point. I wasn't getting any muscle tension, head fuckedupness, dizziness. It all kind of cleared, but not in a flash, sort of gradually. Then last Friday I was like, man, this is great, I finally feel like going out with friends, socializing, not obsessing. Then I did the STUPIDEST fucking thing I could do. I had a few beers when out with some friends who I hadn't seen in ages. why? 1) I honestly felt like I had stabilized. No other dose had made me feel so different and "back" 2) It had been 9 months since last drinking and I'm just going to be honest, it SUCKS not being able to drink. It has had a major effect on my lifestyle. Friends were literally counting down til the day I could. Anyway, just to say that I had been waiting a lonnnng time to stabilize so that I could enjoy some brews with my friends. It was more of an impulse decision and I never would have if I wasn't feeling great. 3) I'm a total f'ing moron (biggest reason) Anyway, it's 8 days later and since day 3 I've had a rebound of symptoms as is customary when trying to stabilize. I think 1998 has warned people a million times not to drink any alcohol until stable, but that's the mistake I made. Those 2 weeks of perceived stability after almost a year of feeling like crap fooled me into thinking I could get away with it because I had achieved stability (of course you need to wait at least 2 months until considering it). Anyway, the dizziness is back, head buzz and other symptoms. They're mild, but present, so a huge failure in my grand plan to recover and find a stable dose. I'm hoping that it's just a flare up and temporary, but I've read that people can be screwed permanently by this kind of indiscretion. Only time will tell. I feel so depressed (is it a symptoms or a natural reaction?) and angry at myself because I have only myself to blame. In the long run though, there's the realization that maybe I'll never reach that point where I can have a casual drink the way I used to (remember alcohol never affected me during my 4+ years of positive benzo use before the cuts) and that's going to be brutal. This past year of going out sometimes (usually tried to not even go out) and being faced with people getting shitfaced or even enjoying wine or scotch, it's been tough. It's in no way an alcoholism thing, that I'm sure of, merely a quality of life thing. Anybody else make this stupid mistake when trying to stabilize? Most of the posts I read are from people who have been benzo free, have gone through wd and now when they drink it brings it back. I'm in a different boat I guess since I've actually been upping my dose to stabilize. Back to the original issue, Visual - when you said that Dr. A is trying to get me to give myself the best treatment, I think that's totally a valid point. The thing that's actually worrisome is that he flat out denied the existence of benzodiazepine withdrawal. He said there is no evidence for it and you can pull someone off and put them back on with no effects. People say he's human and all that, but if Einstein couldn't solve the root of 4, I think we'd all be questioning this whole relativity thing. He of all people should know of the severity of the wd syndrome, let alone the fact it occurs at all even for brief periods when tapering (hence the point of tapering). That's the only thing that makes me wonder if throwing everything but the kitchen sink at my problem is good medical advice. The fact that you, 98 and others have had positive results with Gabapentin does allow me to consider it. For now though, I think the goal is trying to rid myself of this alcohol-induced return (albeit I was only feeling good for 2 weeks!) of symptoms. Lesson learned the very hard way.

Merkan and Jay, I feel like half of me sides with each of you on the subject. I think what needs to be considered is what the symptoms of your hppd are. I would guess that most of us don't really care about visuals as much as the physical symptoms and associated anxiety-related issues that arise concomitantly with hppd onset (such that they are inseparable). My hppd is largely physical and after years of klonopin use (successful until a nasty taper attempt), it has become very hard to determine if I still have physical hppd or if reducing my benzos is pure benzo WD. How can one determine this? Benzo WD without hppd induces the exact symptoms one uses klonopin to eradicate. So now that I've gone through this process of reducing (unsuccessfully), I don't know if it's due to the inability of my GABA system to recover (as in a normal benzo withdrawal situation), or if it is that I have reached a dose (by lowering) where the original symptoms remain and are not not being treated (Akin to an epileptic reducing meds below their threshold). A few things I've learned from personal experience: - tolerance doesnt occur for everyone and honestly I don't even think it's leaning one way or another by any statistical measure (lack of evidence). People don't post much about not developing tolerance. Before my cuts, I was happy and didn't even consider that the benzo was a problem. That said, people do develop tolerance although I think it's a very complex issue as I've found from my tapering. - tapering a benzo that has worked terrifically for you for many years just might be the worst decision you can make if not done properly. This is my situation. I cut according to Ashton's guidelines with the intent of seeing if i could reduce and it has f'd me up good (month 9 now). I've had to increase my original dose from 4 to 5 (after going from 4 to 2.75) to feel somewhat normal and I can tell you I still don't feel completely normal (but hopefully getting there). This is DEF a benzo problem. Can't stress enough how even if benzos work great for you, be very careful reducing them. My system is in such disarray from the cuts and from not correcting them soon enough that my whole response to klonopin (previously amazing) has been changed for the worse. I'm not sure I'll ever get back to where I used to be in terms of them effectively eliminating my hppd with no dose escalation. - so on one hand I initially had a great response to klonopin for years. No tolerance. Great drug. On the other hand, upon my doctor trying to reduce me (IMO too fast), I have now developed a horrible battle with the drug that could have been avoided by just sticking to the dose that was working for me. Again the question arises: If you decide to taper your benzo and you develop horrible hppd symptoms, what do you conclude- is it benzo WD, the fact that your original hppd is not being treated or a bit of both? My wish: if I stabilized and felt great like I had all those years before an then was able to (maybe over the course of a year) taper down to ~2mg. Yep, for me that would be a success. All has to do with the sensitivity of your receptors and that's an individual thing I guess. I could stay on them long term and I don't think I would develop tolerance. Bad benzo management, however, is a recipe for disaster. Now, I don't know how to plan the rest of my life knowing that I may have cooked my goose with the only drug that allowed me to live after getting HPPD + inducing benzo WD. How do I plan a career? Can I ever have a relationship, get married, have kids? Again, all this due to a taper gone wrong (and ftr nothing drastic by Ashton stds), not the inevitability of tolerance. Just FTR: klonopin DID save my life. I was suicidal (1 year with debilitating hppd before I got on it and my life fell apart). Once I was prescribed, completed a phd in medical bioscience (though the tail end was spent in this taper mess spiral). Couldn't be where I am without it, just hoping to return to a stable point. Also, previously (after testing, not reckless abandon), I could drink on klonopin with ZERO extra effect. It didn't get me drunker not give me terrible hangovers. Klonopin was literally like a silent angel. Of course this is not the norm for most people (and isnt advised), but again, individual responses. Also i wasnt abusing it or anything, just drinking like an average (?) person. Now, don't think I should ever drink again and won't barring a miracle recovery. GABA system fried.

So to address a couple of things: Gill - I had absolutely no reason to start cutting, I was doing great on it for 4 years. Clinic doctor changed, new one didn't believe in HPPD, forced me to start cutting. She also wasn't aware of how carefully one should wd from benzos, HPPD or not. I never had a single side effect even at doses of 4 and 3.5mg. Since our receptor responses vary so much, I think comparing doses is also not an exact science. No dopey feeling, minimal cognitive effects. It really was working just great. 98 - I definitely have been angry with myself for going above what I was at before considering I had years of stability on one dose, but when your life is flipped upside down, and I'm talking about being at month 9 (as you know), dose starts to matter less than the opportunity of reaching stability. I remember actually that my cut in March 2011 from 4 to 3.5 took about 6 days to stabilize whereas you, as you mentioned were having trouble with getting down from 3.5 to 3.25 for 5 weeks, but you did stabilize then. Just shows how complex this is. The big factor IMO during my cuts of death in December were that they came so close together. I think if I had just made a cut from 3.5 to 3.25, I would have been ok. The extra two cuts (although less than 10% each time) had not allowed my system to stabilize truly from the original cut. So the weaning process needs to be really slow. My doctor pushed me and I was also fooled my my own system that took too long to tell me something was wrong. Cautionary tale. You've been cutting correctly, keep that up. Definitely don't race towards a certain goal even if you feel ok after a cut. And LOL @ rollinggreat! cs1234 - As I said above, I think our comparison of doses doesn't give a good picture since we all differ in terms of the drug's pharmacodynamics and pharmacokinetics. That and add on our individualized forms of HPPD and what 0.5 is to one person is 2 to someone else. It's all about getting that same baseline level of GABA activity. You're lucky that something like 0.5 (I'm guessing) works well for you. I hope it stays that way. That being said, at the end of the day, coming off even 0.025 (notice the decimal point) can be hellish for people (just check out benzobuddies...actually, don't, it'll freak you out). I'm actually not planning on wd at all. I don't think I developed the typical type of tolerance that causes dose escalation. My problem is that my system was shaken up by the cut and it just needs to settle down (which could take very long). Withdrawing was what caused the problem in the first place, not building a tolerance. If I have to wd, it would be 3 years of utter hell given that at this moment I'm still messed up on a high dose. The goal now is to find stability and then see how I respond from there. I think if I finally gained stability at 4.5, then found that in 3 months I needed more, then that would be an indication that I had developed tolerance. Moral of the story - if you're doing well on klonopin, only reduce with extreme caution and very very slowly (give it at least a month between cuts and try to make them between 10% or even 5%). As for the doc willing to give me 4.5 a day, the irony is that I was on 3.5 and she was like WTF get off the benzo! So she tried to taper me too fast. Then I lost my mind. Then 5 months later she accepted that I had HPPD (after Dr. A's note) and that I needed clon. Since then it's just been an attempt to get me back to stability, which hasn't worked at 3, 3.25, 3.5, 4 or 4.5. Upon the advice of a few, there's the suggestion that it might just take some time to reach homeostasis at 4 or 4.5 (i.e. that I'm high enough, I just need to re-adapt). mgrade - I agree with you completely. At the top of the problem is the primary condition itself. Wouldn't we all wish that we didn't have HPPD in the first place. I could live the rest of my life with the visuals, no problem. The physical stuff, which I'm learning is a facet of the anxiety syndromes associates with HPPD, that's the thing that's gripped my life. Going back to your suggestion of seeing if I could get along without the high dose of benzo -- well that was what landed me in this place, i.e. trying to reduce from 3.5mg. I would note that in that situation, it's not even clear whether the result was due to HPPD or due to the inherent difficulty in reducing a benzo. Maybe a bit of both. Biggest regret is not going slow enough, but then again, I was forced into it. Sigh.

Hey mgrade, thanks for your response! I should say that I'm not faulting Dr. A for suggesting I use other medications or increase dose of K. I'm just surprised at how he is unaware (or more correctly, doubting) of the effects of benzo reduction given it's a VERY well-documented area. It's almost like denying gravity. The fact that I made some pretty rapid cuts acc. to doctor's orders that resulted in the typical w/d effects removes the mystery of why I started to feel like crap. It's textbook. The real question is how to remedy it. I've begun to think it's more a benzo problem than it is an HPPD problem since a vast majority of people who reduce it too quickly develop the same situation. Take a look at benzobuddies. While I disagree with their philosophy of "benzos are poison, get off NOW!", one can't really deny that thousands, maybe millions of people are suffering from trying to reduce their benzo (some even off of 0.25). The last stable dose that I was on (back last December before I started those cuts) was 3.5mg/day. It could be considered high, but as you say, everyone reacts differently. I didn't get to that amount by escalation. It was basically like a starting dose that treated my symptoms completely. I know some people are on 6 or even 9! Obviously this is not an enviable situation. By comedown, I assume you mean withdrawal symptoms and you are quite right about that. As for the coming down -- herein lies the big problem: The reduction has screwed my GABA system royally. Coming down CAUSED this problem in the first place. I realize you mean wean slowly, even microtaper, but I'm afraid it wouldn't ameliorate my situation, in fact would likely make it worse. The last thing I need is less GABA activity. I'm trying to find a way to get my receptors to react just as they had before, which is a problem faced by people trying to get off benzos, who go too fast and get trapped with symptoms that don't seem to fade. The big question then is "does updosing work?" to which the general consensus is 50/50. Again, it could require more time at a constant dose to allow my CNS to reach homeostasis. At the same time, I've been going through this hell for 8 months now and badly need an out. If I knew 6mg would do the trick, honestly I would do it just to stabilize. Sadly, I don't know that. I think adding ADs to the mix is dangerous because I don't see the upside, only the side effects and additional problems of more medications. To the best of my knowledge ADs don't wipe out prolonged w/d. The only thing that does is tapering off (would take 2 years min. for me) very very slowly (like you mentioned), while suffering and then possibly suffering for several more years until your receptors recover. Then, you're still left with the physical HPPD symptoms (which I think are anxiety linked) and nothing to help. Also, there is no way I could get to 1mg in 2 months considering I'm already in w/d and it was caused by reducing less than 10% every 10 days three times. I am open to Gabapentin since it seems to have helped others, including 1998, who posted about it above. If you don't mind me asking, what was your timeline for Klonopin (dose, how long you took it, how you got off it)? You're extremely correct about the trial and error thing. I'm struggling now with what to try next (giving 4.5 more time vs. increasing dose vs. adding gabapentin). These could all work, but I don't think doing two or more simultaneously would help identify the problem (I feel like dose increases also shake up your receptors).

Ah I see. I know this might sound patronizing, cuz I'm sure you know what you're doing, but just a word of caution. If you see pretty much all my posts in the past year, they're about what happens when one reduces clon too fast, even without having developed prior tolerance. How fast are you talking? My plan was to go from 3.5 to 2 (after a successful 4 to 3.5) and I got stalled at 2.75 about 30 days in cuz it hit me like a wall (it catches up). I'm still messed (since December). Maybe you're going slower or just react better. I hope that's the case. Last thing I want is for all your hard work and successful recovery to be thwarted by the benzo drop. I can see the DP/DR returning after a few weeks if you don't space it out enough. Like I said, it took awhile for it to present itself so I thought everything was going fine until whammo!

That's great Swartz! Extremely happy for you and hope you make the most of this rebirth. Did you end up recovering completely medication free (you alluded to failed clonazepam and keppra treatments)? Must have been tough getting of those meds in addition to your HPPD going into remission.

Much appreciated, 98, I know you've gone through your fair share of f'd up klonopin reductions (are you at 3.25 or 3 these days?). If I decided to take the med, I wouldn't put it all on your experience, but it certainly helps inform me that it is a possible solution. The things that worry me are: - side effects of other drugs - since all I'm trying to do is reverse the effects of the rapid cut and remain on klonopin, I would rather get a clear brain "on klonopin" than one suffering from messed up receptor sites but covered up with another drug I've been reading up on gabapentin and it sounds like in addition to the side effects, it's just as hard to withdraw from. If I got on it, it might mean that I would have to have both klonopin and gabapentin in my arsenal. I was under the impression that you had stabilized on your last cut from K a long time ago (when you came down from 3.5 to 3.25 even before I started cutting). What w/ds are you referring to that gabapentin seemed to help with? As it stands, my symptoms are mainly muscular and dizziness. I really wonder if they'll just fade over time or if I do need to add this to my regimen. I'm having such a crap day today, as if I'm never going to get out of this. I guess I should first ask my doctor if she's willing to even try it out. Dr. A recommended it, but he can't prescribe it to me himself. Glad to know that it's working for you, though. Also Jay, yes that is indeed extremely strange re: no addition for epileptics. I do know that in that situation it's framed more as "patients don't tend to be susceptible to dose escalation, and the benefits of taking benzos outweigh the costs". I think again the words addition and dependence get mixed up for those doctors. As you might have read in my first post, I'm very surprised that Dr. Abraham is dismissive of protracted benzo w/d symptoms. I think it's problematic because it doesn't address what the root problem is (IMO receptor adaptation/modification).

Thanks Jay. I hope I see even just a momentary beam of light as well. It's hard not knowing which direction to go in. You're quite correct about the benzo struggle. I should point out, however that for those of us that do choose this route either because we have debilitating symptoms or because we want to give it a try, IMO it's not a problem due to the inherent addictive nature of the benzos (although tolerance for many is a problem). It can also be the mismanagement of them by a doctor who doesn't know what they're doing (e.g. new doctor not recognizing HPPD and making you cut your K rapidly). Nevermind the HPPD aspect of it, some doctors don't know how to properly deal with benzos alone. Anyone else who can chime in, please do!

Bump. Nobody has any advice regarding adding additional meds? As I mentioned, what I'm experiencing is pure and simple benzo withdrawal (note: not due to complete discontinuation of klonopin, just a rapid cut from 3.5 to 2.75) that won't go away, possibly due to increased tolerance, possibly due to a CNS shock. The question is, would adding anything like anti-depressants, Gabapentin, etc. alleviate my symptoms? My guess is no because essentially my issue is with a deregulation of the GABA system due to one of many possible mechanisms of GABA-A receptor alteration. Mayyyyybe Gabapentin, but isn't that just adding more fuel to the fire? Should I increase my dose or ride it out for a few months? Would reallllly appreciate some input, I'm at wits end. Thanks!

Most likely scenario is your family doctor will refer to to a psychiatrist (who will evaluate you and either give it to you or not). This is where the whole supporting information for HPPD comes in. Hopefully your doctor understands your condition and that you aren't a drug user (or abuser ftm...they are always concerned about that), that you just want treatment for HPPD. This would be the straight up way to be prescribed the klonopin. If you're in the states, I don't see it being a problem. You could even put it under generalized anxiety disorder, although I can't imagine them giving you more that 1mg for it. With HPPD, which sometimes requires more (hopefully not for you), you have to make them understand that you need as much K as you need to treat it. It's sad that one must jump through such hoops, but that's how I originally got a script for it, and this was before seeing Dr. A. Key: find good doctors!

So it's month 8 since my hppd/klonopin debacle. It was early last December that my clinic doc unwisely made me cut my clonazepam too quickly and for no reason. All that info is in the other threads I've posted in and members here have helped me a lot by posting and PMing. I'm now on 4.5mg of klonopin and I switched from generic to brand. It's been exactly 4 weeks since increasing to that dose from 4 (and a month before was on 3.5 and so on). My symptoms of the initial benzo wd have since 2.75mg (which I held for 2 months) improved slightly but I have residual muscle tension, dizziness and a feeling of skin crawling. These are sort of compounded into "attacks" so I first get the dizziness/balance issue, then the muscle tension and then the skin crawling. Based on the advice of at least two members of this board who had their K dropped too quickly, I think waiting on a stable dose may be more effective than constantly increasing to find a dose at which my symptoms come completely under control. The "attacks" have become less frequent at 4.5 than 4 and 3.5, but they're still there and I'm still not back to baseline. My assessment of the situation is that the prolonged wd (staying at 2.75 for many months hoping to stabilize) has put me in this situation and even if I had immediately updosed upon experiencing wd symtoms during the cuts, it still may have taken me some time to stabilize (again, based on similar stories). Of course, I waited over 2 months to increase to 3 (which was still below my original dose) and only crept up to my original stable dose 5 months later, which I believe has seriously set me back in terms of the K being effective either due to induced tolerance or a general disruption of the homeostasis. Anyway, getting to the good part. I recently had a second visit with a psychiatrist who is well informed about my situation. I explained what my thoughts were on the whole benzo cutting, resultant wd, delayed updose, GABA disruption, failure to remedy even by going above my previous stable dose, etc. I was advised to either keep upping the K, but also if I thought time was a factor, staying at the same dose for however long I thought was useful. More importantly, I was advised to throw additional medications into the mix such as gabapentin as well as SSRIs. Why? Because I should be treating the way I feel and not the hypothetical effects of benzo withdrawal. In other words, the concept of these symptoms occurring as a result of my recent history was foreign, i.e. the psychiatrist didn't believe in benzo withdrawal, prolonged withdrawal, the syndrome or anything that we all are acutely aware of. Yes, the anti-benzo sites are a bit much and they are in many ways harmful, but it seems strange to not even be aware that reducing klonopin too much or too fast can cause such effects. The Ashton work was dismissed as being anecdotal, although any study on benzos is just that -- anecdotal (in that they ask the patient how they feel after whatever treatment). So the subjective is converted to the objective. In any case, I'm troubled because: a) I don't think adding drugs to this problem is going to solve it this is clearly the effects of a rapid cut (the solution to which I have no clear answer...time or dose or both, but certainly not other drugs to mask benzo wd) c) this psychiatrist is someone who I hold in high regard, but I can't fathom that they are unaware of the reason benzos are vilified so much d) this psychiatrist is Dr. Abraham! Just to be clear, I have the utmost respect for Dr. A. He has helped me with an official diagnosis for HPPD. The issue is that we're talking about something that every psych in the world (or so I thought) is aware of and in fact guides the policy of NOT prescribing benzos. The whole addiction, tolerance, dependence matter is based on the mechanisms that are involved in my problem so it just seems strange that he would suggest that I ignore the fact that this is the result of having altered my response to klonopin via the cut (even though it's a direct result of it, not a loose correlation). Anyway, any advice or comments regarding this? Perhaps adding another drug would help, but I believe it would be covering up this benzo problem, which itself is covering up the HPPD. My goal is to get back to a point (now that my original doctor has accepted that I need klonopin to treat HPPD) where the drug is working for me sans residual effects. I think that adding more to the equation muddies the interpretation of what's going on. The best advice I've been given is that my system just needs time to re-calibrate and that even increasing my dose shakes up the GABA receptor relationship. In other words, waiting for a few months at 4.5 is more likely to work than updosing until the symptoms disappear (which they never have since the original idiotic cuts).

Just to give you my perspective on the drug(s): Dr. A said they were intended for use in an acute situation, sort of like how people might use Xanax. He gave me the example of when someone had a lot of reading to do and needed their vision improved for a couple of hours or for driving. Personally I felt barely anything from it, but perhaps the fact that I've been suffering from a messed up klonopin cut (part of the reason I went to see him -- to validate to my doc that I had HPPD so she would stop trying to get me off) had something to do with it. I don't think the drug is intended as a longterm "solution" like klonopin, rather as something to temporarily alleviate symptoms. The only thing that would be promising immediately would be possible mechanisms for targeting different systems (Dopamine in this case) as opposed to blanket GABA bombing. The subtype issue is an interesting one. I'm certain we suffer from different degrees and categories of not only visual but also somatoform (physical) symptoms. Ghormeh, did you just call him up to ask him about the study? I'm still waiting on his reply to my email. I'm assuming that's not gonna happen.

In the end, my doctor came around to Dr. A's advice. Last time I saw her (~two weeks ago) she said "I have now determined that you have HPPD and should be treated with clonazepam". Unfortunately, probably wayyyyyyyy too late. Dunno if anyone has any info about this, but given I basically waited 5 months to (be allowed to) go back to my original dose after some significant cutting, have I permanently lost the ability for klonopin to work for me? It's exactly 13 days since I got back to 4mg. Improvement but still symptomatic. Having Dr. Abraham's note and diagnosis and even advice is worth it IMO. The one thing that is somewhat problematic right now is that after these 6 months of going through the motions and suffering and trying to get my doctor to realize that my HPPD is still around and that I require K to treat it, I have potentially developed some sort of tolerancer/resistance/prolonged wd, whatever you want to call it (maybe it's a flar up of my symptoms such that I need an even higher dose than 4). I've been in touch with Dr. A since to ask him about his thoughts on what's going on with me and while when we met he was of the opinion that tolerance generally doesn't happen, he replied saying there are numerous mechanisms for neural adaptation. He did suggest that increasing the dose could remedy the situation. The benzo boards have a lot of people (if not all) who make cuts that thow them off big time and can never recover due to some adaptation. Updosing doesn't seem to help in their cases. I have no idea what to do and while it would really help if he could help me figure things out, I think I've overstepped my number of questions, given that if you see him, you pay for his services and I'm not sure that means emails down the road. He hasn't replied to my last one, whereas he's a very rapid responder in different situations. I totally understand and I'd even pay more if he could help me (which I suggested in my last email), but I'm not sure what he can do beyond telling you that you have HPPD and that klonopin is currently the best treatment. If you haven't taken K before, my bet is that seeing him and getting a script will do wonders. If you're in a crazy bind like me, even getting a doctor to get you back up to your original dose might not help and then there's not much he (so far) seems to be willing to advise on. Go see him if you can though. It could save your life.

I know Visual posted the link to Dr. A's website. Just an extra detail, go to the contact form and even though it seems like you're entering a public testimonial, you're not. He will get the message and reply promtly to you. If you're able to go see him, definitely do it. He's such an awesome person, practictioner and scientist, I really enjoyed meeting him and despite the fact most of the other doctors in world suck balls, your conversation with him will undoubtedly give you a level of inner confidence that we will all be able to live great lives whether by medical intervention (done properly) or by natural time-based healing and coping methods. I wish you the best. FTR, I read the stuff about your spiritual connection and let's just say it's in my cultural wheelhouse. This is my opinion if you care to hear it -- meditation and spirituality CAN work, but IMO it's really just initiating a physiological response. I really don't like all the misleading mumbo jumbo that goes along with it, cuz often it's just not honest. It exists for a reason and like I said, it is not by any means something foreign to me, I have a good understanding of why it it presented in this form (not unlike most religion, although it's fairly harmless, perhaps why it's absolved of any fierce opposition and leads to stuff like hot yoga...sigh). Point is, if it works for you, that really great and I think what you're doing is (to simplify it) basically a form of CBT. I've studied brain plasticity and associated topics and I am very encouraged by the potential for what we can do just by thought. Ultimately it comes down to a form of appliying scientific principles (that have yet to be completely fleshed out). It's harder to explain certain natural phenomenon than to derive benefit from them. there is a way to heal. Good luck mate!

Oh almost forgot: definitely stop the alcohol , as 98 pointed out. I'm amazed you're getting better while still drinking it OR you're not really getting better at all-- it's the alcohol. Been 6 months since my taper started and no alcohol for me. In the beginning it SUCCCCKED cuz I love beer but I promise you now I dont really even miss it. When you return to your normal, then maybe re-evaluate but certainly not now.

Sounds to me like a classic case of cold turkey protracted WD. 98, if he hadnt quit so suddenly, I'd say perhaps wait it out and even maybe then reinstate to lower dose and taper slow but ct usually means the GABA receptors aren't going to heal in a normal linear fashion. One would have to get back on them, restore activity and thn slowly wean off so that proper healing occurs. 3 weeks is actually enough time on clon (not compared to us obviously) to ct from. It's not surprising that Recovery is going so slowly or not at all. My advice would be reinstate to a dose that controls your symptoms and taper VERY slowly. There's one caveat: if you've been completely off them for longer than 4 months (which you haven't been, so that's good), many say reinstatement is not as successful. Then again these are anti-benzo people and there are many who have proven this wrong, gotten stable and come off slowly and successfully. You're in the window where reinstating will likely work well for you although my experiences make that conclusion not absolute. Just to give you an idea where I'm at (98 you'll be interested to know how a prolonged "doctor not listening to you" situation can result in making a tapering situation worse): I've had to go back to my last stable dose of clonazepam (3.5, yep, 98, had to go back) after months and months of my doctor not listening to me that I had a chronic condition. Once I got a note from dr. A, doctor let me go back to 3.5 from a much lower dose. The time that it took her to accept that I needed to re-stabilize cost me a lot of GABA function so that even now I don't feel like my old self. Essentially she desensitized my receptors by keeping me at too low a dose for too long. The longer you don't reinstate and (eventually) start a proper taper, the less likely IMO you will be able to reinstate at a low dose fairly quickly. There ARE people, however who have gone cold turkey and got back to normal, some within the time frame you give but MOST within years if at all. The biggest question you need to ask yourself is: is my doctor competent and does he/she understand the problem. It will require a personalized response to how you react. I've dropped my clon dose before without much problem and in the last half hear it's caused LOTS of problems so I know both sides of the tapering story. It is indeed hard to taper off benzos and IMO in many cases if they work for hppd without tolerance issues, there can be a benefit to sayin on them. If you want to get off though: must be slow taper. I sympathize with you completely cuz I'm going through some level of hell still but I know now how my body reacts and the nature of my hppd. Waiting too long can cause problems (my case), waiting it out (if symptoms are bearable) has a small but real chance of working. Keep posting about how you feel, everyone is ere to help you get to where you want to be. RR 98, you at 3.25?

This may be somewhat off topic but I think it's related. Given I've seen Dr. Abraham and it's been worth every penny, there are some hurdles that one might have to face afterwards. Since seeing him, he wrote an official letter giving a report of our meeting and suggested treatment (i.e. klonopin works for me, so continue treatment and in my case return to a stable dose -- I had been forced into a taper by a clinic doc who didn't believe in/care about HPPD). It's been two weeks since I was returned to the last dose I was stable at (3.5mg/day). I've improved, but I'm not back to baseline. I cannot emphasize how solid by baseline was before the taper. There was no tolerance, I was doing great (and I had previously been at 4). There are two possibilities (please PM me if you have any insight): 1) it takes longer than 2 weeks for the increase to reverse the damage of 5 months of a failed taper (lowest I went was 2.75). Note that steady state levels should be attained by 10 days max. 2) The trauma of the taper could have desensitized me such that I need a higher dose (which is a situation that royally pisses me off due to the irony). In any case, this is what my doctor is now coming up with to rule out possibly going back to my dose of 4mg/day if I don't stabilize here: - I'm feeling what I want to feel - you can't prescribe benzos long term (when she said "you can treat chronic disorders longterm with clonazepam", verbatim, before I got her Dr. A's note that HPPD can be chronic) - it's (STILL) in my head, I should do therapy instead - Dr. Abraham has a closed opinion and he only suggests what he thinks works and is narrow-minded The point of my post is underscored in the last point and how absolutely idiotic it is. This was the sequence of events: me: It's been 9 weeks since the taper, I'm going through hell, I think we can conclude that my underlying condition still exists strongly dr: the symtoms of WD overlap too much to say me: That's why I waited 9 weeks. That's long enough to stabilize from a reduction from 3.5 to 2.75. (0.25 every 10 days 3 times, not all at once) dr: I want you off clonazepam, that's my mission, your disorder is not chronic, I looked it up online me: (in utter disbelief) That's not factual. *Gave her lots of evidence to contradict*. Also, I have an appointment with the leading researcher in HPPD in Boston. He will be able to support the fact that HPPD is real, that I have it and evaluate my situation dr: Ok, go do that and come back to see me went, after a LOT of having to debate the issue, she returned me to 3.5. Now at this point I'm grateful that I'm even able to get to this point and this is two weeks ago. In the meantime, I came up to 3. So it's been over 2 weeks, I don't feel anywhere near normal (it's better ,but when you're not at baseline it's almost just as bad), but I'll give it time (again, advice on what I should expect timeframe-wise given I've increased to the last known working dose is appreciated, PM plz), I informed her of this and then she went on about the whole "my mission is for you to be on anything but benzos/Dr. Abraham's note is just a suggestion and if he believes in it, why didn't he prescribe you a year's supply?". Note I don't live close to Boston or even in the US. This is just an example of a situation one might face, i.e. even the opinion of the expert in a condition, a seasoned and highly lauded and vetted professional in the field of psychiatry can be dismissed by a simple clinic doctor just because they don't feel like putting themselves in an uncomfortable position (some Dr. overprescribe benzos, this is the opposite situation as I wouldn't be going through this 5 months later if her taper idea was never forced on me). If it stays this way for over a month, I guess I'll write to Dr. Abraham again to ask him what I should do in a situation where the doctor doesn't even take HIS advice. FTR, he's not someone who says klonopin is a must. HE evaluates on a case by case basis and in my case I never had any problems with it AND more importantly it works great for me (no side effects). Some may not need benzos at all. As I posted earlier, everyone's HPPD is different. Mine is a certain type such that I cannot live a normal life without pharmacological help. Dr. A and I even discussed the issue of Drs. who are against benzos and he mentioned what a crock it is to generalize that they are bad for everyone and that it's a big problem in the medical field. Overall I guess what I'm saying is that whatever your treatment option is, even after getting diagnosed by Dr. Abraham, make sure you have a doctor who will work with the advice Dr. A gives them. Some of them are incredibly self-righteous and stubborn, particularly when they aren't sure about what they're doing, that they won't even listen to him. It would really help to have a network of "HPPD-friendly" doctors and going back to a previous comment of mine after seeing Dr. Abraham -- the word on the street about HPPD is still not out and too many doctors are completely sheltered to it's existence and options for treatment. I can't think of it changing in any other way except unfortunately, the increase in the number of people reporting HPPD to their doctors and it being treated as a distinct and diverse disorder separate from psychosis or whatever else its swept into the same category as. It's not just about benzos, it's about whatever treatment YOU and Dr. A (if you get to see him) know is right for you and I've seen many of us chose different paths and have them work wonderfully. Unfortunately, not everyone has access to a pdoc or even multiple if one won't listen (I can't even get a pdoc referral for another 2-3 months, it's absurd). Still can't believe after all this work to go and see him, at the end of the day I have to hear from the only person who can help me -- "It's all in your head" At the same time, I'd be suffering a hell of a lot more if I hadn't made the trip to see Dr. A. I hope in the future a new doctor might not fail me so hard.