rollingregret

Hey everyone, Just had a consult in Boston (well Lexington) with Dr. Abraham. The trip was well worth it. As many have posted before, it is a great experience because for the first time you are not explaining to a Dr. what your disorder/disease is! He is extremely knowledgeable and I find his perspective on it to not be sugar coated, but at the same time we were able to discuss it from various persepctives; possibly etiology, neurological basis, likelihood that it is genetically encoded, prognosis for recovery, methods of treatment. I am in research myself and he recognized that, thus our discussion was more fruitful than any one I've had in 6+ years in academia. Seriously. Dr. Abraham does not claim to know the absolute reason for anything, but like a keen scientist has made inferrential observations, both from experiements and the subjective data he has collected from patients. Recently I had been having some problems with my doctor at home who did not validate the existence of HPPD. Well, that's taken care of. Plus, wherever I move to, I will have a note from him that will help me with whatever treatment path is deemed best for treating HPPD (if at all) as well as documenting that I am not a paranoid hypochondriac. He believes in collaborative efforts with health care professionals and I couldn't agree more with that since for many of us, we know more about HPPD than the doctor treating us. Being able to encourage them to educate themselves on the matter is critical. FTR, I did the drug trial. I do have visuals and recently I've been on a bad/rapid/too large drop WD (bad doctor imposed) from clon so they've been quite noticeable. I can say it had no significant benefit to me although I did "feel" better for a good 2 hours. I think in my case, clonazepam treats my symptoms better and I did realize that the drug does in fact reduce my visuals. I think, however, since everyone's HPPD is different and responsive to different receptor-specific interactions that the drug has potential, even just from a theorhetical perspective. It's totally optional, but I just wanted to see if it did anything. I think it's very important that those of us in the HPPD community spread the word as much as possible. Obviously David and others have done wonders. It's time for the next generation of HPPD-afflicted people to do our part in making it part of the medical lexicon. Collecting as much medical literature on the subject as well as coherent anectodal material will go a long way. The sticky on this board is a great achievement! The biggest things that oppose HPPD being validated by the common doctor are IMO: - stigma of drug use - other drug users dismissing it (when they have an extremely/insignificant/temporary or FTM not technically valid case of HPPD) - the opposition of the use of benzos by the medical community. This is a point where I think it's best to avoid them if you can, but for many people, myself included, they have helped. As long as you know what you're in for (and tbh I've not had a bad experience with them aside from my clinic doctor dropping me 30% in 20 days). - DSM IV needs to be updated. There's so much more information that should be included so that doctors don't distort what it currently says. - There should be a discussion of the grades of HPPD. Some of us have it so bad we can't function, some of us can get through our lives with the acceptance of a few discomforting symptoms, etc. - We should include the discussion that HPPD is visual but often presents with comorbid symptoms. For me the visuals are not the worst part, it's the muscle tension, dissociation, dizziness, which (as Dr. A and I discussed) are somato-physical manifestations of anxiety (I have no psychological anxiety). Thus it is often an anxiety-linked disorder There have been a lot of HPPD warriors and there are to be a great number of HPPD sufferers in the future. In order for us not to require going to see Dr. Abraham, who will one day not be able to help us as he is now, we need to push the agenda. As for those who think he's doing nothing about advancing research in the area, I strongly disagree. He made me aware of some very interesting findings that I think are kernels for future discoveries in treatment. He really is a very kind, knowledgeable and FWIW cool guy in the way he approaches medical science. Being close to that field, I really appreciate his method. BTW there is no placebo in this trial and he fully admits this is a flaw in the experimental design. Still, I think those who do it either notice a difference or don't. For the rigours of a scientific study, one can't claim anything, but you can see trends.

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. 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?

3.5mg was my optimal dose and I felt great, basically HPPD free (no tolerance after 4 years). This included largely physical symptoms (head pressure, dizziness, brain fog, muscle tension, dissociation) which were the worst. I don't care about visuals any more. The poll would be improved by adding a "helped physical symptoms" option because I have had 0 anxiety from it, but the physical symptoms probably underlie an anxiety-related pathway. just started cutting though and my brain was really not happy at 2.75 so recently uppsed to 3 and waiting to start feeling better. I think if you find the right dose it can be very helpful. Messing around with doses can cause havoc even though one is trying to reduce to a lower dose. Ideally, I'd like to go back to 3.5 but no way my doc will let me, so word of caution, if you find a dose that works and you're not developing tolerance, only cut if you do it very slowly and make sure you wait to see the effects (at least 2 weeks). Sometimes the cut only hits you much later, after you already think you've stabilized.

both but as OliverW said, it's more or less masking everything. The positive about clonazepam in my case specifically is that it taught me to not be freaked out by my visuals so even as I'm tapering (I've hit a brick wall, probably my limit) and my visuals are perhaps intensifying, I'm not really noticing it since I've gotten used to them being part of my vision over the past few years. My real problem is the return of the physical symptoms which you can just ignore like you can the visuals. When they occur together, I think people new to HPPD feel as though their visuals hurt whereas it's more the physical symptoms associated with them that are causing that perception. If you don't have physical symptoms, the visuals will fade. I never thought I could get used to them, but I absolutely did. I wonder how many of us have just visual symptoms or visual + physical.

Good point Brendan, there are lots of overlaps with HPPD and the "kosher" brain ailments. I also suspect that we have very different gene expression profiles that give us HPPD, thus the different symptoms and severities. From what I've read over the years, as an example, klonopin works great for lots of sufferers (including me) and does nothing for others. I think HBB was pretty sold on Keppra. Again, targeted therapy is so important for HPPD. The only problem I see with piggy-backing is if a pathway seems to be related when it is actually antagonistic. The poor souls who were prescribed risperadal before it became known to us that it's counterindicated for HPPD!

So for everyone who doesn't know my recent story: http://hppdonline.com/index.php?/topic/578-peoples-benzo-experiences/ 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. RR

I think a comparative genomic hybridization analysis would go a long way in determining genes involved. It's the same for targeted therapeutics. The genetic profile determines the efficacy and choice of treatment. And yup, methylation patterns are indeed heritable so these facets are quite hardwired. That being said, that means better drugs may be developed without going the circuitous route that things like benzos do, i.e. calming the entire system down rather that up-regulating a gene product (which can be done...good luck to us of Pfizer even thinking about its worth...in time, in time)

David, how do you know if cutting your klonopin is withdrawal vs HPPD not being treated? If you have time, could you shed light on my current problem : http://hppdonline.com/index.php?/topic/578-peoples-benzo-experiences/page__st__40 Artvandelay, first of all, I LOL'd when I read your name. At least you've still got your sense of humour. I can tell you this, it is absolutely true that when you've accepted that you see things differently and that's the way it's going to be, and I mean TRULY accept it, they WILL stop bothering you. The anxiety will fade if you stop drinking. It's not surprising at all that you have anxiety right now (or when you posted). It will fade. As for having HPPD at the level you do, I promise you, if you don't have any really physically debilitating symptoms and it's more worry-based, you are in a good territory, it's completely up to you. I've had HPPD since 2006 and although I am on clonazepam (trying to taper, not going so well), it is more for the head pressure and dizziness and other physical things that prevent me from living a normal life. Otherwise I have gotten completely used to the visuals and I do not spend any time staring at things to see whether they will move. I don't remember what a straight line looks like, and that's ok (T-shirt slogan?). Just take care of your health, exercise a lot and know that you will heal. Try not to expect it each day, that's counterproductive. Just concentrate on other things and live healthy. You'll be as good as new soon. RR

Hey guys and girls, Question for you: So it's ~6 weeks since my taper from 3 to 2.75 and I still feel like crap. 1998, you gave me some hope that it takes longer to stabilize, but I'm starting to fear that I've approached my limit (i.e. I require more than 2.75mg/day for the HPPD that hasn't left me even after 6 years). It's been off and on. Today was horrible. Head buzz started 3 hours into my day then just a huge amount of dizziness, head pressure, dissociation. Dunno how it can suddenly just spike like that (yesterday and the day before were low level symptoms, but still symptoms). any insight into whether this is the withdrawal or simply the relapse? 98 I know you said sometimes 2 months, but for less than 10% too? It's definitely how you described your monthlong WD as feeling like you were on a small dose of acid. What should I be doing? FTR, no alcohol, no caffeine. --- After having gone over some posts at Benzo buddies, I am a little freaked out. This is what the majority of people have written in threads: - when lowering your dose, you may experience relative withdrawal symtptoms, that is to say that at your lower dose, you are tolerant to that dose of benzo (as was probably the reason for you increasing it in the first place) - the sticky on this says that cutting faster won't get rid of your tolerance wd on the way down, and that going slowly will improve your chance of successfully coming off - this will, however prolong the WD since it will take longer to come off - maximum amount of time to "hold" is 3 weeks, otherwise you just start to experience tolerance wd -- so saying that if you haven't stabilised in 3 weeks, it ain't gonna happen, and you have to get all the way down and you're never going to be symptom-free at any point during that period + however long after you quit I just don't understand this. What is the point of holding or even reducing your dose if it is definitely going to harm your std of living. I was doing quite fine on 3.5 and thought perhaps i don't NEED that much, so I'd go lower. Now it seems I'm forever stuck on this slide until I get off and then perhaps who knows how long to recover. Also, these are people that don't have underlying HPPD, which again, I'm starting to really think it hasn't even been halved for me, that my HPPD continues to stay where it is the whole time, thus I NEED 3.5 mg, or maybe 3.25 or 3. For people withdrawing, is it because you just want to get off due to negative side effects or like me, want to reduce your dose where possible? 98, sorry to bug you, but when you say you stabilized at 3.25 from 3.5, do you mean you felt pretty much 90-100% (i.e. you obviously had HPPD, but it was barely noticeable and you were effectively "cured" of its effect on your life)? This is what I'm trying to do by reducing, but I'm wellll past 3 weeks and have lost hope for stabilizing at 2.75mg/day. As is mentioned often, up-dosing is not likely to return me to my previous "happy" state and overall is a step in the wrong direction even IF I could get a doctor to approve of it. So...IS there any chance of stabilzing at 2.75? I thought that the reason it was taking so long was due to the rapidity of my first three cuts (1week-10 days apart), as if I wasn't fully stabilized, but the one good day when I thought I was indicated that I should cut and now I'm paying for those, but that I'll eventually catch up and stabilize. HELP!

It reduced my visuals to the point where I didn't care anymore, which honestly, is basically reducing them to 0. When what you see doesn't seem odd to you, it doesn't bother you. Then again, I didn't have huge tracers or after images for 5 seconds, but the usual stuff, extremely bad visual snow, certainly some afterimaging, floaters galore, it was bad. Used to be on 2mg/day, then went up to 4, now am on 2.75 (been trying to taper). edit: Sorry Nedd, I forgot I had already replied to you. I guess you want a greater sample size. Just from my own knowledge, a lot of people who were on clon (before I got on it) from the HPPD board reported improvement of symptoms, sometimes to 90%, sometimes their perceived 100% and it wasn't rare.

Hey Nedd, thanks for your kind support. Tbh, I noticed the visuals being decreased pretty much concomitantly with the decrease in my muscle tension, dizziness et al. As I said before, it's not that my visuals went away, it's that I just didn't care about them. I think that if your non-visual symptoms have dissipated, you should try (and believe me I know how hard this is) to just accept that your vision is what it is, but that you are now free of the truly debilitating features that are often the result of HPPD. At no point in the past 4-5 years (since I've been on clon) have my visuals "gone away". It's a lot like what people say about perception. The thing is, and I really do mean this, once you stop caring about floaters and static and seeing a straight line, it won't bother you. Now, there are different degrees. My visuals definitely decreased. Was this a function of not "linking" the feeling to the other symptoms or to their actual decrease. If I compare it to my current withdrawal, my visuals have increased in intensity proportional to the dizziness and muscle tension. I really think they're linked, and not so much independent. If the clon brings down your visuals by 50% and your other symptoms by 90%, you are lucky and it means it's working for you. Again, I'm trying to describe the phenomenon that the visuals "hurt" because other parts of your body and "brain" hurt. Focussing on visuals makes them worse. You probably know that. Clon allows you to forget about them. What does the 2mg dose do for your other symptoms if you have any? Is it just visuals or are there other aspects to your HPPD that you would consider deviating from your normal state? If those haven't abated at this dose, you might require a higher one. This doesn't mean you are worse off than other people. I was on 4 for awhile with NO problems. It's just the dose you need (if it's the case). At 4 and even 3.5, my visuals were barely noticeable. Before, when I couldn't concentrate on a presentation at work because of all the crazy visuals going on, it was maddening. Now, no problems whatsoever (although during the WD, they've increased again). The hard thing here is that your doctor is using an arbitrary metric of efficacy to determine your dosage. It's an unfortunate situation that you may want to address. If you can show your doctor anecdotal evidence (like this) that visuals CAN be controlled by clonazepam, but sometimes at higher doses, it might help. I strongly believe it is moronic for them to give you a dose like 2mg for 2 months for no specific reason. If they are worried about addiction, well that's already too long and too much. Like I said, it's so arbitrary, but if your doc is willing to work you up to the RIGHT dose, it would be the ideal situation for you IF you think clonazepam is something you want to take on. You will probably already have withdrawal coming off it now, but if that's what you chose to do, all the power to you. As for Vipassana, I'll just be blunt and say it did NOT work for me, but I can imagine that for others who have a better coordination between their body's state of relaxation and HPPD, I can see the merit. Just trying to give you my POV/what worked, etc. BTW, I should say that going from 2mg to 4 mg after the first year and a half did significantly ameliorate my symptoms. Decide whether you're able to deal with the visuals or not. If you want to just live with them as you are now, probably get off the clon if it isn't helping. If you do want to reduce them further, my guess is that even 3mg might help. If it hasn't helped yet, it probably won't get better unless the underlying cause of your HPPD gets "solved" on 2mg. Keep me updated and good luck! RR

Thanks 98, that's very encouraging. I remember back last spring you were making that jump and I was coming down from 4 to 3.5 (at the time, knew very little about WD, just followed doctor's orders). At that same time someone spiked me with MDMA (it's all in another thread from back then, but you got me through the experience). Tomorrow will mark 1 month on this taper and right now, my neck muscles are pretty tight and I'm pretty spacey. Also, I have that body buzz. It's good to know that it just might take longer to fully stabilize. It's odd that sometimes I don't really feel it. I was at a club the other night and felt completely normal, no symptoms and I just had to keep telling myself, "you haven't stabilize, do not touch alcohol, you'll regret it". Then, of course, the next day (after correctly abstaining) I felt the WD start to creep up. Is the oscillatory nature of mild WD symptoms an indication that I'm healing (as Ashton would say) or that I'm very close to my tolerance withdrawal level (suggesting I still do have a "2.75mg's worth" of HPPD)? I'm also trying to minimize any serum level fluctuations by getting pills of whole dose so that I don't have to dry cut, just add up the right amount.

Hey David, good to see you around here. I'd like to post the links, but hasn't the website been fundamentally altered (just like us) since 2007? I'll try to remember which link I used but Alice, if you want some sure hits, google stuff concerning Dr. Abraham's studies with clonazepam and HPPD. I think he had a website back in the day that showed the fMRI images of HPPD patients. Also, print out journal article (even just abstracts) for ones discussing the contraindication of seroquel for HPPD. I brought that to a pdoc (lousy one) and he didn't even bother to read it. The one who helped me, took a good look at all of it. Also, just printing out threads from the "what works for you" sections gives good anecdotal evidence. I have to think that 5 years later, there's even more concrete evidence that clonazepam greatly improves HPPD symtpms. FTR, my opinion is the same as 1998's, I need clon, it doesn't do me any harm, my life would have crashed and burned had I not been saved by it. I'm in the process of trying to get off and while difficult, it's better than going stark raving mad. I got my life back. That being said, I've been on a taper from 3 to 2.75 for over 3 weeks and I haven't stabilized. I'm really worried that my HPPD hasn't abated over the years and that I still require a holding dose and that I can't come off clonazepam. What do you guys think? 3 weeks still with symptoms? I did go through the typical 10 days of hell when I reached a peak and it gradually abated, but I have low level symptoms such as dissociation, dizziness, mild head pressure. They go away with exercise, but I definitely won't be able to permanently deal with them (i.e. I'm praying my stabilization to this dose is just taking very long). Haven't had a drop of alcohol or caffeine at any point since I started my taper from 3.5 in mid december.

neither. Muscle tension, headpressure, restlessness. Visual symptoms increased too.

ha! well, as long as you're not regretting it today, all's well. Right now I'm finishing 7 days into a taper from 3 to 2.75 (my original dose at the start of the year was 4mg/day which I've been on for ~2 years, before that it was 2mg/day for 2 years...HPPD "disappeared"). I was going to cut another 0.25 tomorrow night, but after some sage advice I've decided to wait another 3-4 days, maybe a week before taking another plunge. Haven't had a drink besides water in over 3 weeks and hung out with friends last night who were partaking in alcohol (obviously) amongst other things. Got through it. That's not to mention the other friends who reaaally went partying at clubs. Oh HPPD, why'd you have to chose me? Not that I'm advocating drinking on benzos, but I have also read other stories of people who like me were not affected by alcohol differently while on a pretty high dose. Withdrawing is a different story. Not going near it. I should say though that yesterday and the day before were really bad WD-wise and today I'm feeling good, which is an encouraging sign, I think universally in terms of WD symptoms being temporary. Just wondering...does your HPPD get any worse permanently (or just return to baseline) after..oh say, a night like last night (I'm making a very big assumption)?

I never had anxiety from HPPD. Not in the conventional sense. No panic attacks. Just the consequential mental torture of knowing my life was ruined. It wasn't anxiety though. The interesting thing is that my symptoms were IMO physical manifestations of an anxiety-related syndrome. My head pressure was through the roof (I can try to clarify head pressure, but I'm assuming you've already heard about it). I was dizzy, nothing seemed to be in the right place and I suppose (although I didn't really call it this) it was some form of dissociation, as if their was a veil thrown over my perception of the world. Crazy visual snow. All sorts of visuals, but perhaps not AS bad as some people. It was mostly the inability to see straight lines (I still can't). The thing that clonazepam did was to firstly remove all the muscular tension and head pressure. This was a breath of air after being suffocated for a year. I could think, be happy, do things, enjoy life after a year of pure torture. Once that was gone, everything seemed quite minor. My visuals also decreased in severity. They were the same, but less intense and/or I didn't notice them much. I think HPPD has a lot to do with your state of mind and being in a better one helped to ignore some of the factors that seem more prescient when your entire world of perception is altered. Again, this is probably anxiety related: when everything is messed up, every little thing is associated with that state. The newness of the awful symptoms is what I would describe the anxiety as (astutely put in your post). That being said, my HPPD was unbearable, just 24/7 pain, pain, pain. I've come to understand a lot about the different forms it can take and for us HPPD-afflicted people, I think we know that pain from "within" the brain is the worst, but again, never any actual anxiety. I should also add that (touchwood) during my current taper (it's been 3 weeks, cutting 10% every week) I've experienced my HPPD symptoms (muscle tension, head pressure, dizziness) and no anxiety or insomnia (which is what people take clon for in the first place). Thus, I think it's quite true that one experiences WD as the affliction for which one originally took the benzo. My visuals have also increased in severity but I've become used to them and the knowledge that WD are just that helps me to know that I can ignore my visuals sicne I'll return to baseline. The other factors are very hard to ignore. Yesterday was day 5 in my current taper and it was bad. I was really feeling hopeless, as if I wasn't going to reach baseline for awhile. I've only been awake for 5 hours today and so far it seems like nothing huge...yet, so I'm more optimistic, but hopefully it stays that way (it'll probably get bad around night time). Visual, I know you are looking into it due to, well, visuals and I'm guessing you're wondering whether clon saved my life because it rid me of visuals. If that's the case I'll say that effectively it DID remove me of visuals AND the underlying feelings that were associated with reacting badly to the visuals. PS. Anybody doing anything interesting tonight? I'm assuming at least on the benzo withdrawal side nobody is drinking and on the overall HPPD front, nobody is "partying". I'll just be nursing my WD.

The way I eventually got prescribed clonazepam (as many doctors had refused to prescribe it) was to get an appointment at the top facility that deals with mental health. This was in 2007 when there was basically no exposure to HPPD. There still isn't very much, but online there are far more pages and accounts. The thing that helped was bringing in a boatload of peer-reviewed scientific literature on the subject, mainly stuff from Dr. Abraham who showed that clon was the way to go in treating the disorder. There are other papers that show that seroquel will in fact aggravate HPPD and I showed this to one of the first doctors who tried to prescribe it, but he was just useless and someone who had to see 20 patients a day and give a quick fix. That's how imprudent and terrible doctors can be (and I'm going to say MOST pdocs based on a lot of information). If you go to a special clinic that takes the time to listen to you and if you make a compelling case, I think you have a good chance. The most important factor is: They don't understand HPPD. Nobody really does. They just file it under drug-induced disorder and the meds for that are rarely clonazepam. The other issue is that of dependence and they don't want someone who has admitted to taking drugs to be entering the muddy waters of prescription drug abuse. I think almost everyone who has HPPD is actually more careful, aware and scared of abusing drugs so it's in fact a huge disconnect that these doctors have with normal people who had a bad trip (if that's what we want to call HPPD) and are suffering from an idiopathic disorder. A lot of David's (Kozin) links back around that time really helped me get the information I needed to show the doctors at the mental health clinic. I was suffering to no end, but I was still able to articulate the issue clearly and to show that it's not just the internet (although I printed many pages of pertinent threads from the previous form of this board for anecdotal support). Search Dr. Henry Abraham. He does work on HPPD and ever since I got my life back on clon, I haven't really checked up on that, but I hear it's getting more attention (again thanks to David and others).

It may just be the UK, because there's been a lot of negative press or rather caution probably stemming from Dr. Ashton's evaluation of benzos (as you postulated). It's not "easy" per say to get them in North America all the time, you do need a reason and now they're cracking down on it a bit more. It has nothing to do with it being free (I'll let you fill in the blank). My experience: 4 years (2 years @ 2mg/day, 2 years at ~3.5mg/day...came down from 4 pretty quickly). This is clonazepam, I should say. It saved my life. Reduced my HPPD to completely manageable. I've had no negative side effects that really affected my life negatively, but again I may not be aware of them. I'm now tapering off them and it's going decently well (4 days into a taper from 3.25 to 3 and no symptoms). I'm going to try and get to 2.5 by the end of the first week of Jan. To answer your question, for ME (and it differs), my experience was very positive and maybe I'll require staying at a lower dose if my HPPD is still present at a level it can control.

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.

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.

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).

Did the boards just come back up (glad I checked again)? I've been basically in the same boat as 1998 although for a shorter period. Most recently, for about a year, my HPPD has been kept in check with 3.5mg clon/day. My doctor told me she wants me to start tapering. I honestly didn't really feel the need to as I've not experienced any negative side effects (that I can register). It pretty much rid me of my HPPD which was mostly head pressure and muscle tension. I did have all the visuals BUT like the people with "mild" HPPD say, you just get used to them. So...my life for the past 4 years has been HPPD free, feeling good and on 3.5mg of clonazepam. I started to taper about 10 days ago and during that week it pretty much felt like HPPD coming back. It freaked the hell out of me. Muscle tension was back as was the head pressure. In any case, by day 7, I felt absolutely fine, i.e I guess I stabilized at 3.25. Yesterday I started my taper to 3 (1.5 morning and night) and I expect this week, or perhaps longer to go pretty much the same, but again, I'm new to this so I dunno. The original question is one that I haven't been able to address on all the other benzo boards because we, with HPPD do have slightly different reasons for using clon. I think what pennyarcade said above was the most refreshing thing to read because I feel that as bad of a week as it might of been, it wasn't THAT bad. Nothing compared to what I read other non-HPPD people going through. Maybe there is some truth to the fact that we're kind of used to the feeling. I should say my HPPD never consisted of actual anxiety, just pain, brain fog, dizziness, etc. I'm not sure whether this means I will experience anxiety with WD. I've noticed today that my visuals are more noticeable, but again, given the 8 years I've dealt with this, it doesn't bother me unless it comes with the head symptoms. 1998, what you said above about getting to the lowest manageable dose -- that's exactly how I feel. I highly doubt my HPPD is completely gone, but perhaps it can be maintained at a lower dose. Is there any benefit for being on 1mg/day vs 3mg/day? What do you all suggest as a tapering rate? I'm currently planning from here on out 0.25/2weeks, but I realize that once I hit 2.25, my next cut will be over 10%, so perhaps I'll change it then. It's been mentioned that you can't drink on WD and I totally understand why. I guess I'd just like to get to a dose where I can resume my life as it was at 3.5. I used to drink casually and honestly, absolutely no problems given the dosage of benzos. I know this post is getting long, but one more question: Has anyone come off klon/clon to find that their major HPPD symptoms had disappeared? I ask because as many know, the WD symptoms are going to be HPPD in reverse but once you stabilize, you should feel fine. In other words, could my experience/state/lack of symptoms at 3.5mg/day be the same once I carefully taper off clonazepam (allowing time for stabilization)? edit: '98, I just looked at my previous posts (from spring) and it seems we were having a discussion quite related to what I've just posted: http://hppdonline.com/index.php?/topic/106-poll-about-head-pressure-please-answer/page__p__571#entry571

Thanks Boogres, really appreciate that. I was thinking of coming to post today. Have been keeping track of my symptoms over the past two weeks. Certainly, physical exertion seems to calm my nervous system down to a level where I can then try to stay relaxed. Incidentally since the last time I posted and was "ok", my head pressure and neck tension came back, but I had also done some shoulder exercises. As weird as it sounds, I really think putting my traps in a stressed condition aggravates it THAT much. It didn't used to over the last 4 years, but I guess now I'm dealing with a renewed level of latent symptoms. Since my traps recovered I felt better, but certainly have not returned to baseline. '98 was right though, I am getting better each day and have been quite functional. Going to keep up the healthy living to try and rid myself of the extra bits (occasional dizziness, spacey feeling) and then try to get down to 3.25 like '98 when I've stabilized. I think when you are in my situation, the forcing yourself to just relax, take deep breaths really helps. When HPPD is very severe, that kind of advice is harder to believe, but once you KNOW that you can cause an effect by thinking your way into a different neurological state, makes a world of difference. support, support, support though, that has and always will be a key to helping people in the community and I can't thank everyone enough for their genuine and truly altruistic behaviour. RR

Hey man, so your advice about the gym really helped. It's only been about 16 hours, but ever since my workout, I've felt 80% better. It totally removed the head pressure and muscle tension on my back. I did a bicep/chest workout which I think drew the tension away from my back, pumping all the blood to the aforementioned. I'll keep you updated on how I feel throughout the day. The positive thing is that my symptoms seem to be really intense only when I'm sitting at a desk at work and doing some reading/writing on my laptop. Sitting down seems to aggravate it, although at the moment I feel ok. I'm not counting my chickens yet though. Good on you for continuing with your withdrawal. We are totally in this together so PM me and I'll send you my contact info. What do you think the prognosis is for recovery IF when we titrate, we are just returning to the condition that caused us to want to be on klon initiatially? Do you think we might be "over" HPPD, but we need to re-experience some of the bad stuff on the way back down off of klon? I do remember a lot of Lucid's posts. Been trying to find them, but a) hard to find old board stuff, I've been trying to ignore the boards except for what you've been giving me. Anyway, be strong and we'll get though this. Also thanks for your support, RR

cool '98, again, the fact that you've seen this pattern before is lifting my spirits. Still have a question though - although the people who tripped with hppd has a reversal of additional "temporary" symptoms, were any of them had pressure/muscle tightness? I feel like the visual aspects have a tendency to subside, but the way my hppd recovery went over the 4 years was the immediate cessation of the head pressure/tightness phenomenon, which then allowed a gradual, but significant decrease of everything else. Everyone's HPPD is a little different of course so I'd say mine emanated from everythign that was going on with my head, shoulders, face and upper back. Once that was removed, it was a sign that the anxiety loop had been cut (btw, I never actually experienced any anxiety, just the effects normally associated with it). So, when you say the other people came back to baseline, were they also suffering form an acute rise in this head pressure phenomenon? I know I'm really bugging you about it, and I am trying to take all your advice to heart - I'm heading to the gym now, although it's gonna be hard to focus on lifting with all this tension in my traps. Also, you mentioned that you still get head pressure. The 4 and now 3.5 on klon didn't remove it (as it did for me upon starting treatment)?