Benzo wd syndrome -- psych questioning its validity

[rollingregret]

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.

[1998]

I haven't had a good phone for a while, so I was happy that day to get one of the best phone's out there lol. That's all

Tomorrow I'm going cold turkey off tramadol that I've been taking for a year. HIgh dosage as well, I prob won't be around for a while.

For some reason my body is so fucking addicted to this med. sucks. I even have to work one day when I'll be at the worse parts of the w/d's and I can't call in nomatter what. IDK, I never took meds before hppd. Now I'm just in a constant w/d stage and most of the time I don't even know what it's caused by. I upped my klonopin to 4 mg. a day and believe it or not it's been causing more panic attacks.

How the hell can klonopin cause more panic attacks when I upped it wtf. I'm just not feeling good take care all!

[rollingregret]

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

[1998]

my phone is a samsung lmao 4g gallaxy, anyways I'll prob return it for newest I-phone.

So back to benzo's......They are as confusing as can be????? I just don't think about it and go w/ the flow (or atleast try).

Have to take off to work right now and get my mind off this shit. Later bro, you're a good person! When I feel like hell you really do help me out, can't tell you how much I appreciate having an online hppd/benzo counselor

[mikethemerc1]

Honestly in plain English, fuck dr a, yeah I know he's our only hope and blah blah, but he also didn't believe derealization was a part of hppd. That's real bs if there ever was any as we all know. Benzo protracted withrawal is real as day and worse than any wd out there. I support dr a and his research but as a person he sucks and won't even answer a phone call question unless you throw him 300 bucks. I have gone through benzo wd but never got to that high a dose. I wd from 2 mg of ativan cold turkey with hppd, it was hell for the next 2 months hell I can't even remember anything I did during them I was a walking corpse, not to mention my derealization was 10 times worse. You should consult another doc about it and when I talked to Abraham he hated the use of benzos for hppd, that was a couple years ago. Anyway to the op, you said he's your psych, are you from Boston? I am and I am trying to get a support group together with people with the disorder.

[rollingregret]

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.

[mikethemerc1]

Dr a is pompous but we gotta deal until more docs get on the hppd band wagon. As for the benzo problem have you tried seeking a drug rehab center? I went to one for benzo detox and they warned me about benzo protracted wd they didn't even want me to leave as soon as I did. If you can talk with them they may have more experience. As for meds to help, Neurontin was something I heard but honestly I wouldn't add anything. Is there any reason you want to stop the benzos in particular? I only stopped because I react badly to them, ie voices in my head and hot flashes, hell I could've been allergic. But good luck it's possible my friends daughter got off Xanax 3mgs and oc's 40mg at the same time and she was 15! But don't push it if you need it, you need it no shame there

[rollingregret]

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.

[mgrade]

Right now Rolling, you are doing a tight-rope act----but actually you sound good so i am guessing you have basically stabilized. Listen if you gonna taper, do it like 1/4 a month. You are obviously sensitive to tapering, but you are have developed a tolerance (hmmm........?). But the idea of Gabapentin seems good for you. Benzos are helping GABA bind, because Benzos bind to the Benzo-receptors at Benzo/GABA coupled receptors. Gabapentin is just raising concentration of GABA. I think adding the Gabapentin will help make the whole circuit less excitatory.

For me, such a large dose of Klonopin, the side effects would be too much for me and i would barely be able to stay awake. But if the side effects are not bad for you, that's ok. But if you wanted to go off Klonopin some, it seems to me, on a scientific basis, that Gabapentin would make it easier.

******you could also consider the actions of quinidine (or even pepper) on drug resistance and maybe incorporate pepper and simple gaba-supplements together cause i don't know the effectiveness of gaga-supplements in terms of the BBB.

[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!

[mgrade]

Gabapentin is actually a GABA-analogue. So I'm guessing it would bind to the GABA receptors and cause the same or similar actions when binding to these receptors. In terms of actions similar to GABA within the synapse itself, I have no idea. ......As opposed to GABA supplements, I would say that Gabapentin goes past the BBB.

Using Quinidine is a totally shady thing for letting things past the BBB, because i don't truly know the repercussions. But i do know that pepper (black?) is a very weak Pgp inhibitor and Quinidine is a less-weak Pgp inhibitor ('n therefore some drugs and other things are able to enter cells and cross the BBB.

I think that if you took Quinidine for a long period of time, you could get a bad disease, or certain drugs will take "forever" to "metabolize", or it may influence your heart negatively.

GABA is an inhibitory agent and so by increasing concentrations available to "reptile-brain" neurons, or exciting GABA, you are inhibiting the circuit and therefore treating anxiety.

.....I am interested that you are not one of those "only-visual" people who just see a little static. Because I have had anxiety and DP really bad, for long periods of time. It is important for people to know that this disorder does not only involve the low-level visual disturbances, but hallucinations, DP, anxiety, panic and perhaps delusions. These may be "co-morbid" but eventually should be absolutely included in this disorder as symptoms, IMO.

What type of research do you do?

[mgrade]

This is what i have learned today: That eating Chinese food can do all sorts of weird things to you. (by the way i love chinese food).

1. MSG (related to one of the two main neurotransmitters, glutamate)

2. Black Pepper (Pgp inhibitor)

3. Sesame Oil (contains sesamin which inhibits PXR reception and therefore inhibits Pgp) ["]http://www.hindawi.c...m/2012/242810/]

4. Immodium ----finally when you are all done, and the spicy food catches up with you, and your GI system doesn't feel right,

you take an Immodium which is a opioid agonist which does not pass the BBB, but with the Pgp and PXR inhibitors, it may pass the BBB). Then you get the "high" of Immodium crossing the BBB. And the anxiety and headaches from increased glutamate.

[*BTW---i would not take St. John's wort and eat Chinese food]

[rollingregret]

Interesting insights on the Chinese food solution. I've never quite experienced an immodium "high".

I would say that there are a LOTTTTT of us with not-just-visual comorbid symptoms ranging from psychological ones (anxiety, depression) to DP/DR to muscular/head pressure/dizziness. A lot of these are linked and I think mainly through an anxiety-related pathway. Yeah, I really don't care about the visuals. It's really just the feeling normal and the symptoms that are synonymous with benzo wd (which complicates things) that bug me.

My research has been in the identifying factors involved in cell division and consequently cancer. Also involving discovering novel biomarkers and targets for therapeutics.

I am, however, much more interested in the brain, for obvious reasons. Really wish studying HPPD mechanisms was a mainstream field or at least got some real research attention. I'm so sure that it's linked to "normal" neurological disorders.

[mgrade]

rollingregret------i've really been keeping your case in mind recently. I believe that in doing research the road will end up for a treatment of something, whether it's cancer or other disorders.

But in terms of the matter at hand, I've really had a real up-and-down relationship with benzodiazepines. For me the best benzo was Ativan. Short half-life and less addictive and dangerous than Xanax.

I felt like a million bucks aside from some very slight agitation today. Stupid me I ruined it with 1/64 of a mg of Klonopin. Now I feel like someone hit me in the head with a black-jack.

I empathize with your situation. And i was wondering how well you have been tolerating your meds?

[VisualDude]

Guys, be very careful with gabapentin, i used it only for 4 times, each time i"ve noticed almost total loss of visual disturbnaces, which lasted for 2-3 days, but after all, my visuals became a great deal stronger. No other drugs except klono and occasional buzz were used at that time, so that i guess it was the trigger for worsening of symptomps, mental and body load as well =/ Had to increase klono significantly, i"m not even capable of reading texts without it..

Visual, what is your gabapentin dosage and how long do you on it?

Gabapentin has mixed effects on my visuals. It helps night vision (lack-of-black) at times (unless 'inflammation is too high'). However too much or sudden changes in doses can aggrivate 'movement of stationary objects'.

I started 2 years ago at 1800mg per day for suspected seizure reasons - it was a lifesaver. Currently take 300mg once a day in the morning.

[rollingregret]

-mg : I have tolerated klonopin extremely well when it comes to side effects. I've not had any aside from mild cognitive impairment. Can't think as quickly, but I can cope. The problem for me is that I tried to reduce my dosage, got slammed with WD and my doc didn't let me correct it for 5 months. By that time I think my system went through a whole reorganization, possibly leading to tolerance or a time-dependent recovery delay (sort of like shaking up a snow globe).

How does klonopin affect you? 1/64th of a mg! I can't tell the difference if I take 1mg more than I already do. How are you dispensing such small dosages?

Visual, as you might have noticed from my posts, I'm giving Gabapentin serious consideration. I don't care much about the visuals, but the potential alleviation of my muscle tension and dizziness. I know dizziness is a side effect, but it is for klonopin too, which I don't get. More concerned with what the state of my GABA system. would increasing GABA really help if my receptors are in a state of shock after an apparently unwelcome cut?

[VisualDude]

Don't know how you would respond with it. Gabapentin is actually not quite GABA. From Wiki http://en.wikipedia.org/wiki/Gabapentin :

"Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors. The mechanism of action that leads to its rapid analgesic effect is simply unknown.

Some of its activity may involve interaction with voltage-gated calcium channels. Gabapentin binds to the α2δ subunit (1 and 2) and has been found to reduce calcium currents after chronic but not acute application via an effect on trafficking of voltage-dependent calcium channels in the central nervous system. Another possible mechanism of action, reported by Ben Barres and colleagues in Cell in 2009, is that gabapentin halts the formation of new synapses."

Like most meds ... sounds scary that they don't even know how it works. Guess we just live in a crazy world of chaos...

Sinemet and Imipramine (only med that is anticholergenic I've tried) reduce muscle tension the most. Are there areas that are worse for you? Calves? Neck?

Basically I've had chronic pain much of my life. Not so bad as to prevent functioning ... even got so used to it I didn't know it was there. But when taking certain meds (Sinemet, Gabapentin, Keppra, opiods) there is relief and I go, "Wow, didn't know I hurt that much". When the meds wear off it hurts again and I know until I get used to it again. Perhaps that is part of lack of energy. Kind of crazy but you can get used to almost anything.

Don't be afraid to try Gabapentin. Just the same old, 'start low and slow'. As for dizziness, didn't used to have any. Now larger doses do have that problem.

[rollingregret]

From the description you quoted, it sounds like it acts similarly to benzos -- I think benzos affect voltage-dependent chloride gating, essentially reducing the action potential and inhibiting the excitatory activity of given neurons. Sounds like Gabapentin does it, just using another method of diminishing action potential.

The muscle tension and dizziness are closely linked -- I attribute them to physical aspects of anxiety. When people are anxious acutely, they experience these acutely. Due to altered brain chemistry, and a permanently hyper-excited state, I get these symptoms constantly (or less frequently due to the klonopin, although when it was working, eliminated them completely). For me, it's all about calming the brain. Klonopin did that wonderfully and I'm most annoyed at the fact that prior to cutting I was lucky in that I had barely any side effects. Now I seem to be straddling a line where at the best of times I feel like there's a buzz going through my body and at the worst, I have spells of dizziness, the associated neck/back/shoulder/head tension and pressure and now (perhaps just because I've lost hope and am frustrated) emotional aspects of anxiety and slight depression. No neuropathic pain (calves, arms, etc.). All anxiety area muscle tension.

Perhaps I'm mistaken, but isn't Sinemet a drug that was used in Dr. A's trial. It was that or Levadopa or something. I think they work in the same manner - regulating dopamine. I did the trial and it had no effect, though I read many people having Sinemet as part of their cocktail. This is the problem, I really don't know about many alternatives to treating physical HPPD other than Klonopin, the efficacy of which has been diminished by my cut.

If I were to start Gabapentin, would I have to ramp up to the point where, like you, I would get the dizziness? Also, isn't weight gain a likely side effect? One aspect of the past year's trauma has been that I haven't been able to diet (although I work out like crazy) properly, since eating is a coping mechanism. One can only really eat right (IMO) when relaxed. As a result I've gained two inches to my waistline that really bother me. When the klonopin saved my life, for those ~4 years, I watched what I ate and kept myself in the physical condition that I felt good about (not saying I had a six pack or anything, just normal lean physique). Having returned to the "anxious" state, that's all gone out the window. It's also why I'm wary of things like keppra or other anti-epileptics since they calm the brain to the extent that your metabolism slows. I really wish my doctor had followed the principle "If it ain't broke, don't fix it!"

Again, I have no personal experience with these other options. What's your take on the side effects, also notably cognition. One thing that HAS taken a beating with klonopin is the quickness of my math skills and to some extent vocabulary, but I think they are at levels that I can overcome. Well worth the benefit it provides (providED).

Also, Visual, if you don't mind me asking, are you currently in a state where you feel you are treating you HPPD such that you are essentially cured? Of course, when on medication, cured only means bandaid, but IMO it's the same thing. We have brain injuries (to receptor function) that may or may not be corrected over time, so quality of life is what I consider to be "cured". Is you QOL as it was or close to what it was before HPPD?

[VisualDude]

Surprisingly (or perhaps not), not all GABA receptors are the same. Take tetanus. The toxin permanently binds on only certain GABA sights. In severe cases the hospital tries to keep you alive long enough for you to grow new GABA synapses. Not all muscles are affected even though they have basically the same neurotransmitter ... just subtle differences. So selective muscle tightness usually happens.

Gabapentin is definitely benzo like. But as with all benzos, each is a little different.

Yea, most of us hate to get fat, lol. Typically antiseizure tend to suppress appetite. Of course eating is a famous comfort mechanism.

QOL ... why do I feel bitter about that? No, I haven't cured HPPD. A few symptoms (such as 1 sec delayed motion) are resolved even without meds. And some QOL issues are actually better from the Sinemet ... so clearly at least my dopamine issues date way back.

But I accept that I am a lifer. I get very tired of tweaking meds ... but the condition requires it. Right now am working with Keppra and frankly feel like hell on it.

It helps a lot do understand why there are certain problems. With toxic encephalitis, I've been told I cannot recover. Ironically some things did get better and that just confused some docs. Also ironic is that I was glad to hear them say it because one gets sick of being shuffled off as anxiety/depressive disorder [ people don't see in frames, have CEVs or whatever from depression, lol ]. I knew from the start it wasn’t a temp thing … it literally felt like parts of me age 20 years in just 3 weeks.

Like your comment, "Well worth the benefit" - that is what happens when you find a med that improves QOL. Sinemet has been the best for me. Klonopin only slightly useful. Gabapentin actually helps me to breathe when hot (go figure that one) so have to say that is a good one. More than 1 dose in the morning gives me bad headaches now, so, as is typical, the brain has shifted some.

IMO brain injuries partially heal, but the end is not as in the beginning. But life is so dynamic that most of us have a lot left. It is a bloody shame when a doc freaks out and changes your med like what happened to you. But you will find a leveling point.

I actually take lower doses than 2 years ago. But am in an ‘awkward’ stage – more side effects (except Sinemet) without knowing good alternatives yet.

[mgrade]

hmm........i'm a little confused ......but I am very interested in your Keppra and Gabapentin advice. .......Who first proposed Keppra and Gabapentin for our disorder?

[1998]

I'm just tired and venting. But what really pisses me off is I was feeling great on 2mg of klonopin daily after 6 yrs. of use. Not much tolerance no side effects, and then I met opiates. After messing around with those and upping my klonopin to 8mg daily at times just to get high, I could never make it back down to 2mg of klono daily. I'm current on 4mg and not taking the other drugs and just don't feel nearly as happy and def not as energetic as I used to. I'm not sure what has happened to me, but eventually I'm going to quit my job and go through very bad w/d's for a year or two so I feel normal again. I need to figure out what to do about getting off klonopin or atleast down to 1 or 2 mg. daily and I'm fcking scared. Especially knowing my wife will have to watch me and the last thing I want to do is lash out at her for no reason except wd's. IDK, I have a good life, but I could make it a lot better if I went through some serious wd's sorry i just don't know who else to vent to, Hppd has beaten the fuck outta me

[1998]

Reading this guys post has made me feel much better about taking klonopin longterm.

"The length of time one has been dealing with anxiety/panic, and the severity of the condition, surely must play a part in medication decisions. i was anxious for much of my life, had had severe panic disorder for 10 years, and tried numerous antidepressants and a couple of benzos, before a new pdoc put me on 1mg klonopin 3x/day. changed my life.

if someone is just going through some relatively short rough patch, or is in an unusual crisis that won't be lifelong, then more short-term medication trials are no doubt in order. me, i'd had 14 years of therapy before being put on klonopin (therapy was extremely helpful, by the way, and i don't regret a minute or a dollar of it, but it did nothing to prevent or cure panic disorder once it hit), and klonopin was a godsend. i started at 3mg/day and have stayed at that dose for 15 years (attempts to lower the dose send me back to where i was pre-klonopin).

sometimes the possibility of being on a medication for life is worth worrying about. and many times it definitely isn't. i don't think it sucks when it's necessary. i mean, why hate being dependent on a substance to survive? (don't we depend on air, water, food, shelter? other people? is that weak or something?) i hate to see people looking at necessities so negatively. everyone has crap to deal with, for life. needing a psych med for life is no different from needing insulin for chronic diabetes, or a pacemaker for a bad heart, or a cast for a broken leg, or antibiotics for a bad infection, or glasses for blurry vision, or antacids for chronically painful heartburn, or orthotics for flat feet, or whatever.

the way i see klonopin, i'm damned lucky there is a medication likely to allow the rest of my life to be worth living, and lucky that someone finally had the good sense to try me on it. there were only so many more emergency room visits, bouts of smothering hyperventilation, and bow-outs from public events that i could have stood"

[VisualDude]

i mean, why hate being dependent on a substance to survive? (don't we depend on air, water, food, shelter? other people? is that weak or something?) i hate to see people looking at necessities so negatively...

Well stated. If Klonopin (or anything else) for life improves QOL, then be greatful.

hmm........i'm a little confused ......but I am very interested in your Keppra and Gabapentin advice. .......Who first proposed Keppra and Gabapentin for our disorder?

Don't know where the idea of Keppra came from ... perhaps a neurologist recommended it to someone (it's an antiseizure med) and it helped. Then got posted, etc...

Clearly there are post here with people getting help from it. And in general, it is considered a mild medicine. So it is on the list of things to try.

My problem is that I go through the equivalent of benzo withdrawal between each dose ... it has gradually beaten the snot out of me. No doubt a time release version would help. The first couple times I tried Keppra it cut DR way back for a brief time ... so the med clearly "touches" some areas involved. Have tried it yet again and made it a few weeks ... but had to stop 2 days ago and am slowly feeling better (QOL has doubled since).

The pharmacology involved is poorly known (as with most meds). Largely you read that it affects SV2 (Synaptic Vessel #2) proteins . If you dig a little you'll find that there is some action involving dopaminergic neurons, but not explained.

Like any med, just start low and see how it goes. I suspect it is a good adjunct med for combination with other. Would like to have better understood how it helped Merkan as he uses it in combination with others ... maybe when he visits sometime he will explain more.

Gabapentin is another antiseizure med - something that can quiet an "disinhibited brain". Not sure if it actually has been recommended for HPPD. On DPselfhelp.com there was a member who's DP resolves with just Gabapentin - so there is some relevance.

I started using it for what appeared to be continuous mild seizuring. Vision wise, one important thing is it reduced peripheral vision hypersensitivity. Even if I don't take it, this is another 'permanent' improvement now.

Don't know how or if others would benefit visually. You just have to try it. It has been agreeable with me, though now an evening dose tends to cause a headache in the morning ... don't know why.

[Jay1]

There was a white paper somewhere about Keppra used in a trial to treat "persistent flashbacks".... Someone posted it here a few years ago and everyone started trying it (me included). The white paper was lacking in detail and pretty unspecific.

I think in the desperation for a cure, we will jump on any glimmer of a chance.

[VisualDude]

lacking in detail and pretty unspecific ... seems to be an underlying theme in our lives

Thanks for the post - its good to have some history

And then there are those who go into details,

E-ze-kiel cried, "Dem dry bones!"

E-ze-kiel cried, "Dem dry bones!"

E-ze-kiel cried, "Dem dry bones!"

Oh hear the word of the Lord.

The foot bone con-nected to the (pause) leg-.bone,

The leg bone connected to the (') knee bone,

The knee bone connected to the (') thigh bone,

The thigh bone connected to the (') back bone,

The back bone connected to the (') neck bone

The neck bone connected to the (') head bone

Oh hear the word of the Lord!

Dem bones, dem bones gon-na walk a-roun'

Dem bones, dem bones gon-na walk a-roun'

Dem bones, dem bones gonna walk aroun'

Oh hear the word of the Lord.

The head-bone connected to the neck-bone,

the neck-bone connected to the back-bone

the backbone connected to the thigh-bone

the thighbone connected to the kee-bone

the kneebone connected to the leg bone

the leg bone connected to the foot bone

Oh hear the word of the Lord.