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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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rollingregret last won the day on December 29 2012

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  1. Just wanted to bump this thread to give everyone an update on my situation should it be of help to others: Saw my pdoc today. We were potentially going to start me on Keppra (it's all the...rage...these days) . We decided not to, based on the fact that at 1 month out and change, Gabapentin is REALLY helping me. I'm about to kick it up to 400mg TID and although I've had some concerns about weight gain, to some extent it could be in my head and if I really start gaining weight, then we can start considering Keppra or alternatives (I've actually been pretty much the same, maybe a harder time shedding excess fat...but I've also been way more sedentary over the past 6 months since graduating and looking for a job.) 1998, not sure if you're around these days. Last you posted, you were going through some tough times and since we've really had VERY similar paths, I would think that it must be helping (I vaguely recall you giving it a try, not sure what your dose was or longevity of treatment). It could very well be that this benefit does not continue long-term, but I'll cross that bridge when I come to it. I'm still only at 80%, but no skin crawling, very little muscle tension, all that's left is a bit of body buzz and over-caffeinated feeling in my head. Visually neutral FTR.
  2. Seems like a bunch of people starting/recently started Keppra with mixed success so far. I'm seeing my pdoc tomorrow, might be starting it as well although all this uncertainty has given me pause. I'm not sure if there's any conclusive anecdotal evidence on this board that Keppra helps visuals significantly or even to some degree in everyone. I guess it's one of those trial and error things. Personally I think if there are fewer drugs that could help you overall, it's the best route. Ocham's razor and all. That said, if you need Concerta, the only meds that I have heard (experienced one) reduce visuals are klonopin (reduced them for me) and Keppra.
  3. Absolutely it can + worse withdrawal due to short half life as you mentioned. Problem is that she takes the absolute view that long term benzo use is impossible when that's patently untrue. Just strikes me as unscientific to not even mention the possibility. With proper management and supervision, it can be done. +1 re:covering their asses (most of them, and mostly the least educated to make a decision) I've had 2 doctors who essentially saved my life and one GP who undid all their help. Thankfully I've got a terrific new one. Not out of the woods yet, but it feels nice for someone to have your back.
  4. Great post Visual, very informative as always. As you said, I have to treat both. The complicating matter is that my HPPD and anxiety are linked in two ways: 1) my visuals and physical symptoms started simultaneously (so it wasn't exactly apparent until recently that I actually had an anxiety-related problem -- just "HPPD") 2) the physical symptoms, which I lump under chronic anxiety have really come about after my attempted benzo reduction so they're at least in part a result of benzo wd (which artificially causes anxiety symptoms if you know what I mean) Anyway, as I'm trying new meds, just went up to 900mg TID Gabapentin today. You say it's best as an adjunct. Quite right and even though my klonopin dose seemed to have reached a plateau in efficacy (for whatever reason), gabapentin seems to be potentiating it or getting it to work again (so in essence acting as an adjunctive therapy). My questions, which you answered, regarding SSRIs were of course trying to explore alternative treatments so that I can circumvent the weight (fat) gain I've notice even with a super strict diet and lotssss of exercise. As for diet, since I do mostly resistance training (with cardio in the way of hockey, soccer), I already have a protein heavy diet. Since I've been very health conscious and active (off and on...we all slack a little) for a decade (since my adolescent metabolism abandoned me), I know exactly how to lose a certain amount of fat in a certain time frame. The equation has changed now with this altered metabolism so I find even that even eating a low % of carbs, the only solution to curb the cravings or even just keep the fat gain at bay is with thermogenic stimulants, which goes COMPLETELY contrary to my efforts to fix my mental health issue. Catch-22. I guess you're also suggesting that Zoloft is likely to cause weight gain (and it is mentioned as a possible side effect although for some reason I get the impression it's the least offending of the ADs). I wonder why MDMA causes a complete if not extreme loss of appetite if it increases (massively) serotonin. Perhaps because it also enhances dopamine release, but I thought that was secondary. I think my best best is with Keppra IF it works for me. I know your particular set of circumstances prevented a positive outcome. Perhaps I will have Rene's response to the med. Apparently it's not prescribed much in Canada. My new pdoc (who has finally been helping me get my life back) had never prescribed it and wasn't very familiar with it when I mentioned it as an alternative, yesterday. I would have thought that to treat bi-polar, seizures, etc., it would be quite common. Thankfully she's giving it a look see (can't tell you what a relief it is to be seeing a real open-minded professional). I also spoke to a pharmacist and my M.D. friend who's been on rotation for a year (one of my MD friends who I think is deserving of the title...there are some who I worked with in academia who I am frightened to know have a medical degree). They said the same about Keppra -- not often prescribed outpatient as far as they were aware/hadn't heard much about it. It also might not be available as leviteracetam, only branded, which could suck big time. Anyway, that all depends on how my gabapentin treatment progresses and whether my new psychiatrist is in favour of it. It would be sweet to be on a drug that treats the anxiety, reduces visuals AND suppresses appetite.
  5. I believe it's supposed to take at least two weeks to start working. (Rene, how quickly for you?) Are you thinking of adding lamictal. Aren't they supposed to go together, one potentiating the other's effect? I'm thinking of starting it to treat my anxiety disorder since klonopin has stopped working. Would be an added benefit if it clears up the HPPD visuals and cognition issues as it seems to have for Rene. Anyway, good luck and I hope that you only have a few more days until it starts kicking in.
  6. So now that I've started on Gapabentin to deal with the muscle tension and heightened physical anxiety (combination of benzo wd and my original HPPD constellation), I've found it to have promise (still at a low dose - 600 TID). Nevertheless, I am both skeptical about whether it can cause a total return to my pre-klonopin cutting experiment state (i.e. effective "curing" of my symptoms) as well as leery of the weight gain side effect. It's too soon to really assess the latter, but I've been working out and dieting like a mad man for the three weeks I've been on it and whereas this would have resulted in a significant body fat reduction previously, I have either stayed the same or gained a bit. I can only imagine what would happen if I hadn't been rabid about my habits. I know some people will say "what do a few lbs matter", but klonopin didn't cause me any weight gain and so I'm used to a solution where I'm comfortable "being me" both mentally and physically. Anyway, to the point: I'm debating alternatives already (even though I'll give this at least 6 weeks). There's an SSRI and Keppra. My clinic doc says that SSRIs, specifically Zoloft is the top choice for anxiety and has the least weight gain potential. Why is anxiety important? Cuz my symptoms are muscle tension and a hyper-excited CNS. I'm pretty used to my visuals, don't really care at this point, although for the record, klonopin vastly reduced them. I then read online (maybe not the best way to get definitive stats) that many people gain weight on Zoloft -- more than I would expect based on my doctor's claims. For example, if you saw that people were gaining 40 lbs on Keppra, you'd be surprised that a large % of people on boards were reporting that given it's just not know for weight gain (perhaps the opposite). Ok, so now I'm doubting both the efficacy, appropriateness and side effects aspects of Zoloft. Keppra -- Lot of positives on the boards lately about it. Like gabapentin, may work, may not, I have no idea what the stats are there, although many people get at least decent relief from gabapentin (anecdotally). Back to Zoloft. Why is an SSRI bad for HPPD (as stated in this thread)? I'm guessing because it causes more serotonergic activity and HPPD is related to a class of these receptors. My impression was that there is LESS serotonergic firing amongst a group of inhibitory neurons causing the "noise" blocking mechanism to diminish. Anyway, I'm well aware that there are different types of the same receptor, in different parts of the brain, doing different things, so it's complex. Thus, the rationale for why SSRIs are bad must be experiential, right? Also, to Visual's point, we're all dealing with overlapping issues. I think the majority here have visuals without physical symptoms (the DSM IV definition of HPPD). Some though have anxiety (psychologica), DP/DR and a mixed bag. So different meds are going to work/not work as they're treating different things. Overall klonopin seems to work best because it's the best storm calmer out there. I figure GABA's inhibitory effects > inhibiting whatever channels Keppra and Gabapentin inhibit. I think Gill has a similar situation to me in that the biggest thing klonopin did for me was to immediately eliminate all the ancillary symptoms (I would classify them as physical, post-hoc). This removes the association of discomfort with visuals and they become, as the people who naturally adapt to HPPD suggest, part of your reality. I can't say that my attention has been shit more easily though . So, the fact that Zoloft helped him leads me to the question of whether it is effective against anxiety and anxiety-related pathways. It is, of course, used for this, but the question lies in identifying what exactly is causing my hyper-excited CNS (to the point where I have head pressure, muscle tension, panick-attackish tunnel vision). If I had psychological anxiety, it would be pretty evident, but I don't. This is an unusual case of having the physical without the psychological. Sorry to make this long-winded, but given the aforementioned doctor's view re: Zoloft -- why is it not discussed here as an effective solution to HPPD-related symptoms since many of us suffer from anxiety-based pathologies? Is it simply cuz Zoloft sucks at anxiety itself or that most HPPDers just don't have anxiety? If Klonopin works so well and doesn't exacerbate the visuals (at the very least), while affecting serotonin to some degree (as well as dopamine, glutamate through GABA), why aren't SSRIs a popular choice? Thanks for the info -- seeing my pdoc in 2 days and would love to have some HPPD perspective! rollin
  7. Amazing video. Thanks for the contribution! Not sure what you meant about your speech, because you are exceedingly coherent and lucid. This is exactly the content that we all want to yell to everyone who doesn't get it (doctors and otherwise). Progress comes from awareness, so again, thank you! Are your symptoms purely visual or do you have any anxiety-related or physical symptoms? Tried any meds for it (not suggesting you do, just wondering)? -mg, you're right, more videos are better. Unfortunately, I don't have the confidence (and perhaps justifiably so) that going public online won't be detrimental to my career/public life (wouldn't be great for a potential employer to hear me talking about this given we aren't afforded the same moral equity as cancer, Alzheimer's, cystic fibrosis or anything non-illicit drug related). We're a stigmatized disorder that I doubt will ever fade. People (maybe the majority) will always misunderstand drugs that could easily be or that previously were legal. That's why the utmost props from me to fin01 and others who've done the same.
  8. What's the skinny on how it affects things like muscle tension and head pressure? Rene, you mentioned to me in a PM that you had some of that and that it got rid of everything (kind of how Klonopin worked for me). Were visuals your main problem (i.e. the canonical definition of HPPD) or were there other symptoms that Keppra really helped with/eradicated? My impression is that things like anxiety and DP/DR have overlapping physical and pseudo-physical symptoms that would benefit from inhibitory neuronal signalling (e.g. how GABA works in the case of benzos). I finally have the opportunity to try meds with a new pdoc and we've been doing gabapentin for the last 3 weeks (still at a low dose). It has lots of potential IMO, but the weight gain aspect is really off-putting. If I can get the same with Keppra with it being at worst weight neutral, I'd rather go down that route.
  9. Interesting to see her read from her bible. I have a love/hate relationship with Ashton. Certainly she is important for bringing the phenomenon of dependence, tolerance and the harsh withdrawal process to the public sphere. Incidentally, I haven't met one doctor who has been involved in my treatment with benzos (total 4, including Dr. Abraham) who has any clue who Heather Ashton is, or about her protocol. She makes so many good points that go so effortlessly overlooked or ignored by most doctors, namely - don't push a patient into a taper - let the patient control the rate The problem I have with her is that she spawned the anti-benzo community, which became far too rabid and led to legislation in the UK and Canada that made doctors leery of prescribing benzos. This lead to a new doctor (as I have chronicled in many threads) taking over my case, wherein I had found my miracle cure to unbearable symptoms for 4+ years with zero side effects, and forcing me into a rapid reduction, resulting in me (one year later) stuck in protracted wd at an even higher dose! Did my doctor listen when I said I wasn't ready for my next cut? No. Did she believe me when I said that the wd was too intense and that my underlying condition wasn't being treated? Nope (had to go see Dr. A to validate that HPPD was real, even though I was already being treated for it officially prior to her taking over my case). I had no problems with the only drug that really worked and tbh I probably could have reduced without this life ruination if I had been allowed to go slower. The irony is that the medical community has come down hard on benzos and benzo-using patients and then forced them into wayyyy too rapid tapers and sometimes CTs! Utterly amazing and horrific. It's like they only got half of the memo. In addition, many people take benzos long term with no problems (I'm talking 20+ years). The blanket assessment that benzos can't help in the long run is a medical fallacy. Yes, probably for many, tolerance is an issue (which should be dealt with delicately), but for so many people, it has saved their lives, including mine. Then the rug has been pulled out from under us. Absolutely benzos cause dependence, but not always tolerance and little incidence of addiction (using the word in the correct sense). The one thing that Ashton just brushes off is that thousands of people on benzos are leading normal lives and the idea that one MUST come off them, no matter how slow ignores the fact that we have jobs, school, lives that get obliterated by benzo tapering when it just is not necessary. She seems to understate just how brutal the syndrome can be even if done slowly. That said, she's completely right about the fact that they're awful to come off of, but that doesn't justify them not being prescribed or more to the point, them having to be withdrawn from when they're working perfectly fine. The medical community is woefully disconnected from the helpful things she preaches and the seeming overall message that benzos are bad and one must get off them. Now I'm on 5mg/day, which does nothing but prevent further wd (who knows, maybe 7 is my lucky number, but we're in cuckoo territory here), trying all sorts of other meds with horrible side effects when my original stable dose should have never been tampered with by a GP. The truth is that people on benzos don't have "rights" to say "no, I don't want to taper and you can't make me". Had I known it was going to do this to my life (tapering too fast, not getting on benzos), I would have found a way to get them prescribed by another doctor. I think we only learn about who this woman is once something bad happens in our benzo experience. And the docs? They never learn.
  10. Hey David, Thanks for your reply. Hopefully you'll have the time to give me some more insight. It's been 22 days on gabapentin and 8 days @ 600mg TID. It certainly seems to have potential in treating my physical HPPD-related symptoms, which I think are together basically a co-morbid somatoform anxiety state (note: I don't have and never have had psychological anxiety). Still, it hasn't gotten me back to baseline, i.e., when my 3.5mg/day of klonopin was working wonders for me (for many years and without dose escalation). The side effects, as you alluded to, have worn off even at a higher dose. I am very active and don't feel any sedation. Unfortunately I have suddenly gained 5 lbs and it's visible around my abdomen. (*double facepalm*) I know the net is a bad place to find bad side effects, but in a very large sample size, more than half of the people just talking about gabapentin (not necessarily complaining about it, and often saying how it helped) report massive weight gain. I don't think I can mentally deal with this since I'm naturally reasonably fit (no six pack, but good BMI, flat stomach when dieting and eating right, which I am). You mentioned that it would only be useful for social anxiety and more mood related stuff, but would not have the same anti-anxiety potential as klonopin. I'm confused by what you mean. To be clear, I have no social anxiety although trying to cut my klonopin dose from 3.5 to 2.75 in 30 days last December resulted in a protracted state of wd, persisting even after going back up and above (on 5mg K and still no return to baseline) -- which has resulted in what is essentially chronic discomfort and pain and very little desire to socialize (akin to having a cold...when you're sick, you don't really feel like hanging out). Thus the gabapentin is not to ameliorate any social or psychological aspect, but rather the moderate levels of head pressure, tension headaches, etc. (which I think are part and parcel of the whole "feeling wired"/tunnel vision thing -- it's a lack of calm due to a hyper-excited CNS). So the real issue is that my purely physical symptoms (I don't care about the visuals, they're just part of reality at this point) persist and are a) not reacting effectively to klonopin (I hypothesize by some mechanism of induced tolerance by an attempt at a reduction that was too drastic) b ) the benzo withdrawal may have exacerbated this The issue now remains: how do I treat my symptoms? Klonopin seems to have been rendered useless, although perhaps my threshold has just been raised so that I require a very high dose (not unheard of). It's noteworthy that I was at 4mg for around 4 years (basically just off the bat, not due to escalation) with no side effects. I was able to reduce to 3.5 in one shot with little trouble. It's only when I was forced into a compressed reduction some months later that all hell broke loose. If you're suggesting that gabapentin won't work (and I'm already very unimpressed with what it's done to my metabolism), what other choices do I have? Let's assume that my underlying condition persists. Getting off klonopin (which was stupid to attempt in the first place since I was doing fine on it) is not going to do anything to help this. Thoughts? Suggestions of other meds to try? Any chance that I'll eventually stabilize on the klonopin or have I just rendered it useless? FTR, Dr. A suggested gabapentin as well as SSRIs. Also, do you have an account of your struggles and accomplishments related to your reduction of benzos. I know from being a board member since 2006 that you've had your war with them. Is there a blog where you've chronicled why you stopped, how you tapered (or CTd), what the result was, how you've come to be in the place you are, etc.? I've long admired your dedication to this community (you're pretty much the leader IMO) and your ability to be coherent and productive in the face of such terrible trauma. I'm a scientist (mol. bio and some neuroscience) and I've been really impressed with the effort you've put into making this an academic subject. As I told Dr. A (and, of course, he agreed), we really need so much more research down to the individual genotyping. Different drugs work so variably. I see the future of psychiatry involving highly personalized treatment. In addition, I think one thing that is lacking from the understanding/definition of HPPD (in the DSM IV), amongst other things, is the mention of it's coincidence with anxiety disorders, DP/DR, etc. Anyway, that's all tangential. Need help. Please and thank you!
  11. I know what you mean '98, I too feel like after all we've been through, our life situations are so similar that we do know each other in ways that other people can't fully grasp. Got a new pdoc. She's awesome. She's committed to giving me all the support I need to lead a normal life. This means trying different strategies to get out of this mess. Only problem is that these is no obvious solution to fix this very strange problem. She's even open to high doses of klonopin and mentioned it's not inconceivable that this cut has just required it, unfortunately. Anyway, for the time being, and upon your advice and that of others in these threads, I started 300mg Gabapentin TID. First impressions: - (consider I can tolerate 5mg klon with no side effects) EXTREME drowsiness the first day (day before yesterday) and for the most part it's persisting. Initially the sedation effect removed some of my uncomfortable benzo wd symptoms. - It's day 3 now and I'd say it's partially alleviated some symptoms, particularly the muscular tightness ones, but today, even with the drowsiness and feeling of relaxation (closer to normal), I feel like my tunnel vision/inability to focus is still there. Add to the fact that I feel so lethargic, I'm not getting any more productive. Just feel like lying down and doing nothing. Skin crawling largely gone. - I know it's a starting dose and perhaps at 900 I'll feel a more benzo-like effect, so we'll see. I'm going to be seeing her again in 13 days. I really need this drowsiness to normalize, otherwise I won't be able to stay on it. - Very scared about this supposed weight gain. Is it perhaps overblown on the internet? I know I should probably start a new thread about this experiment or add it to my previous one, but I feel pretty guilty about starting so many threads. It feels like there have only been like 3 or 4 of us on these boards on a pretty regular basis for the past 7-8 months. I've sent David PMs in the past, but never got a reply. Anyone know if he's around? '98 -- LOL at your suggestive use of emoticon. While sometimes the board does remind me of my troubles, I will admit that you have all also given me support when I really needed it so compared to a militant and ironically very negative board like benzobuddies, I actually get solace from talking to you guys about HPPD and our courses of action to right our respective ships.
  12. Holy Shit. Apparently there are far more concerning matters at hand than mine and 98's withdrawals. GET THAT DOUCHE A FACE! That is seriously creepy, still not sure if real.
  13. 98, as we've talked about, there doesn't be any reason that you or I should be coming off them as they aren't making us worse, only for the moment not making us better (you due to the opiat fiasco and me due to rapi cutting). I think if we stabilize and do really slow tapers, it might be ok. Statistically, what does 65-100% mean? That's a HUGE margin of error on one study or they're using one study for the lower bound and apparently Dr. Abraham's POV for the upper bound. 100%...ok.... Very true, it's what makes figuring out a course of action so difficult. LOL at fratboy tolerance and small-horse dosage. I've never thought of this range as being high before having to creep up to it since I was at 4mg and then able to cut to 3.5 before this whole thing started. I never really thought about the quantity, 4mg, as being ridiculous. All I knew is that I found this medication and 4mg got rid of all the debilitating symptoms. It's only after the cutting and running into problems that I even looked into benzo wd as a problem and saw that people are usually on 1.5mg with HPPD and often just 0.5-1mg with GAD and consider it to be huge. I do think my dose had to be higher because naturally my initial "tolerance" (not ramped up over time) was higher than most (possibly due to the difference in the efficacy of allosteric modulation on my system + I mainly used it as an anticonvulsant or to treat extreme excitation of my anxiety pathways). As you said, even on the label it says to reduce with caution. To say you can go on and off and there are no withdrawal symptoms...for a benzo... Sure, very aware of the plastic nature. I guess what I meant is that the receptors have changed after 4 years of being in a particular state, brought on my a mechanism where the absence of adequate levels of GABA-A activation cause downregulation. It's not so much a re-organzation of function as it is a gene/molecular regulatory response. I WISH there was some positive plasticity where the hyper-excited neurons would form synapses with inhibitory neurons. That would be an instance of restoring function to a normal state and some positive plasticity (as in the case with recovery from stroke, brain injury, etc.). That's good to hear that I don't need to be a frat boy when it comes to Gabapentin either, and I think you're right -- it's my best bet. Going to have to wait several weeks to even propose it, maybe longer. I do think Klonopin by itself reduced my visuals (including peripherally-based ones) but also I believe that once you decouple the physical sensations that go along with experiencing the altered visual state, visuals aren't so bothersome. I think what we experience are "painful visuals", but once you remove the pain, they are, like during any sort of drug-induced state (apart from a bad trip), not a bothersome event.
  14. Assuming one does get off benzos. Then one is left with...untreated HPPD (which is pretty much the same thing as abject benzo withdrawal). Catch f'in 22. Slow benzo wd is often successful, but it would probably take 2 years not devoid of "mild" symptoms. Again, that's assuming the only problem one has is that they are in a benzo and not that they have a chronic disorder. In some ways (and this may just be wishful thinking), I don't think I've become benzo tolerant, just GABA messed, if that makes any sense. I only experienced problems when I dropped my klon in successive cuts that were probably too close together. I still wonder why GABA receptors supposedly upregulate to their original levels or near when one reaches 0, but not during either the reduction (which supports why slow tapers work) or even when holding at a dose after a cut for a long time due to the severity of the cut. They say the shock of cutting causes downregulation of the receptor or uncoupling of the benzo from the GABA site. I want to believe that this can be reversed over time (span of 3-6 months). If no klonopin to treat HPPD, then what??? Sinemet didn't work in the trial for me. Gabapentin and keppra are variable in results. Oh wait, never mind, I forgot, I have migraines!
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