Benzo wd syndrome -- psych questioning its validity

[mgrade]

Put this on an Intel chip and we can all cut out our brains. Good pictures.

[rollingregret]

Ha! Nice, Visual. Imagine our doctors even attempting to consider that HPPD is a complex disorder or even that the therapeutic approach must be an effort of great dedication and understanding.

98, Don't feel bad about the k for life thing. There are sooooo many people who do that. I think for you, just like for me, the frustration is that we had pretty acceptable doses and our systems got messed either by other medications or by stupid medical advice/coercion. It's one thing to get over the fact that we have HPPD, it's harder to get over the fact that we had effectively cured it (and it's associated symptoms) only to have the cure demolished by circumstances that IMO are not subject to the concept of inevitable tolerance, etc. Certainly our GABA systems are in states similar to that, but not due to an eventual time element, rather ill-advised medical interventions.

I'm going to see my doc tomorrow where she'll ask me, "How do you feel?" I don't know how to answer that. Has 5 been better than 4 or 3 or when she cut me down to 2.75. Yeah. Do I feel "normal" like I did at 3.5. No. Do I know whether it is better to stay at a constant dose rather than to increase the dose (I think going to 5.5 or 6 would depress me just due to the stigma). For that matter, should I add on gabapentin? Keppra? No idea where to go from here. I've been fairly functional, but not back to where I was and I still get episodes where my symptoms go nuts. They're less frequent. Does that mean I'm healing or that it'll stay at this pace at this dose? No idea. And if I make the wrong decision, it has great ramifications (perhaps staying at 5 for several "uncomfortable" months might return me to normal, perhaps it'll be several wasted months).

The problem with trial and error in these cases, and it certainly is the root to take since, as Visual points out, there is diversity in Gaba function, is that is could make things WAYYYY worse. For rtrudeau, keppra was her klonopin (magic bullet). For Visual, it's causing problems. Gabapentin helps some, but again, makes it worse for others.

The other day I was in the car trying to assess whether I was approaching normalcy. It has been so long (December) since I was last in a good place that I can't really gauge how good I'm supposed to feel (although I know I've repeated many times prior that klonopin has effectively cured my HPPD). Anyway, I just had to consider one thought - "Do you feel like you're so sober that either drinking or popping a pill would alter your conscious state?" And the answer is a resounding NO. I realized just how much I felt like I was low level tripping. Will this low level dissipate to nothing (as it feels after I finish a workout)? No answers. No plan. And the irony of this all is that the same doctor who tried to force me off the benzos now has me on 5mg that isn't even working as well as the 3.5 she was so terrified of initially.

[Jay1]

haha, cool image... but where is the "factory reset" button?

[VisualDude]

Put this on an Intel chip and we can all cut out our brains. Good pictures.

The above lyrics are the top secret code that makes the chip so very powerful

Ha! Nice, Visual. Imagine our doctors even attempting to consider that HPPD is a complex disorder or even that the therapeutic approach must be an effort of great dedication and understanding.

Reductionism is a tool, not an endpoint. It is a weakness in our scientific system for guys to try to prove something, when in fact, the very definition of science is that you can only disprove.

Yes it all comes down to Electrons, Protons, and Neutrons (and stuff even smaller) ... but the superstructures are massively complex.

I'm going to see my doc tomorrow where she'll ask me, "How do you feel?" I don't know how to answer that. Has 5 been better than 4 or 3 or when she cut me down to 2.75. Yeah. Do I feel "normal" like I did at 3.5. No. Do I know whether it is better to stay at a constant dose rather than to increase the dose (I think going to 5.5 or 6 would depress me just due to the stigma). For that matter, should I add on gabapentin? Keppra? No idea where to go from here. I've been fairly functional, but not back to where I was and I still get episodes where my symptoms go nuts. They're less frequent. Does that mean I'm healing or that it'll stay at this pace at this dose? No idea. And if I make the wrong decision, it has great ramifications (perhaps staying at 5 for several "uncomfortable" months might return me to normal, perhaps it'll be several wasted months).

Sometimes you just got to hate that "How do you feel" question. If you say, "I'm managing" then they say, "So then why are you here?" If you say, "Poorly", the say, "Oh, then Klonopin isn't working ... try some Prozac [for at least 3 months]..."

It takes time developing a working relationship with docs. Too bad she jerked you around. At least your Dr A visit reopened the door.

It is hard to choose the next med. And often it is best to wait until you are stabilized, which hasn't quite got you there next. But make good use of the visit and at least get 1 new med to try ... eni meni mini mo ... then try at your discretion once you actually get your hands on it. [ Seems easier to get street drugs than 'legitimate' ones ].

With the Tocapone+Sinemet trial you said, "Personally I felt barely anything from it". Can you tell us what you felt? At least side effects?

haha, cool image... but where is the "factory reset" button?

It is encased in lead, hidden at a top secret facility in the Canadian Rockies. There are many road blocks, detours, and distractions to keep out the most ardent searcher. Even 007 failed to retrieve it ... perhaps because by now he is in nursing home.

[mgrade]

I think having her would be a good step toward reseting my button....lol

[VisualDude]

I think having her would be a good step toward reseting my button....lol

Nothing wrong with your vision then.

Definitely a case where it is good that the guards bear arms ... and sometimes a little bit more

[mgrade]

Talk about nice hips...........F-this, I'm moving to Canada .....lol

I think i'd be seeing auras without HPPD.....lol

[rollingregret]

Talk about nice hips...........F-this, I'm moving to Canada .....lol

I think i'd be seeing auras without HPPD.....lol

Well, it is awesome here, EXCEPT if you want a choice of psychs!

So I saw my doc today. I posited three options that I saw for possible treatment:

1) increase from 5mg klonopin (or Rivotril as we call it here) to 5.5 or 6 (whatever we thought might be the magic number)

2) do nothing, hope that the protracted nature of these symptoms will settle after several months at a stable dose

3) incorporate any one of the meds we (in this thread) discussed. I was leaning toward gabapentin.

She said that despite my incremental improvements with each dose increase, she felt underqualified to prescribe higher than 5mg or alternative meds. She is a GP and I do actually empathize with that viewpoint, although this whole thing started by her executive decision to cut my benzo when it had been treating a condition foreign to her for 4 years prior. Go figure.

The worst news today was in a report from Dr. Abraham. This is particularly relevant to this thread. So when I saw him last, it was month 6 of being in protracted withdrawal from the benzo cuts (enforced by aforementioned GP in December). He didn't want to talk about benzos at all. As I mentioned in the OP, he denied that benzo withdrawal even exists and the idea of protracted withdrawal or lasting effects from cutting too fast or too much were mythical. He actually asked me to provide him with evidence for this unknown phenomenon and when I cited Ashton, he dismissed it.

Anyway, this is how clear things are:

- HPPD contracted in 2006, consisting of visual disturbances, muscle tension in neck, back, forehead; dizziness, head pressure.

- Late 2007 - finally found a psych willing to prescribe klonopin after a year of abject suffering (to the point of considering suicide)

- Klonopin treatment removed all physical symptoms and I didn't care much about visuals. Perfect.

4 years later...

- New doctor takes over file, doesn't believe HPPD can last this long (after doing google search), forces cuts from 4 to 3.5 to 3.25 to 3 to 2.75. The last three cuts were in ~30 days.

- All original symptoms return, do not stabilize for over 8 weeks. GP dismisses symptoms, stating that it's still withdrawal and to keep waiting.

- Another 2 months, get progressively worse.

- Go see Dr. A to get official diagnosis

- GP now believes in HPPD and agrees to return to original dose. Surprise surprise, it's been 5 months and 3.5 doesn't work anymore. GABA system screwed royally.

- Been climbing every month by 0.5mg/day. Now at 5mg. Clearly it's a combination of still having the original condition + violently disrupting GABA system = protracted symptoms.

- Dr. A's letter of our last report comes in. He had concluded that since my debilitating symptoms were the physical, muscle tension, head pressure, dizziness type, the are NOT part of HPPD and that I have a migraine problem. No mention of role benzos have played. Suggests SSRIs and anti-migraine meds!

It's the last part that REALLY bothers me. Seriously? This is not-HPPD related? My original symptoms are the exact ones I have today and that were remedied by klonopin and returned after reducing klonopin. Whether one considers HPPD to be purely visual (in the technical sense) or a combination of that with secondary linked symptoms (usually anxiety related and often manifesting as the ones I have), the point is that the treatment got botched and the SAME problem has returned with a vengeance. Not saying it has to be a klonopin solution alone, but MIGRAINES!!!?? Classic benzo wd = migraines.

I remember the visit too. I was trying to describe (as hard as it is to express) what I was feeling and even though I was talking about an anxiety-based tension headache+DP/DR type dizziness, he kept saying that I am experiencing headaches, which is not the case.

So now, no meds to help, no Dr. A to recognize that this is HPPD + bad benzo taper reaction, no answers. Just have to stay like this. The GP said she was referring me to a local psych who would take over my case. It will take min. 2-3 weeks if I'm lucky. I cannot WAIT to introduce this new one to the wonderful world of HPPD and hear his views on how either I must get off klonopin altogether or how I have migraines.

Please somebody tell me I'm going to find a way out of this mess.

[mgrade]

You will........but firstly, you must listen to me. I have one friend a doctor and the other a nurse. I have had this disorder on/off for 15 years. I have/have had the co-morbid inflictions as well.

Doctors basically treat symptoms. .......Just as I thought, Dr. A is pointing towards anti-depressants and headache meds. ........My neuropsychiatrist (while nobody is near perfect) pretty much wrote the book, and his colleague basically discovered the first antipsychotic. .....Nevertheless, keep in mind as for me I have zero credentials. .........The doc told me to look into two things: Buspar and Seroquel. ....Of course I'm not on either of those.......But i see where he is going. ........For you, I think Buspar is a route you should look into. Also, for me, I have been much helped by Lexapro and Wellburtin extended-release. .................I don't know how it would be done, but under the advisement of doctors i think the way to go is getting you on some combination of these meds, so that you get stabilized enough to tapering off some of your Klonopin. ........Of course, the other option is stay on the Klonopin for life, but that does not seem to satisfy you ( ..and with good reason).

[Lastly while i know nothing of this med, it seems that Gabapentin is something to look at too, because it has been found to be a very safe drug and maybe Imitrex for the head.]

...Nevertheless, the other drugs i was talking about: take note of them and my strong feelings about them. Thanx

[mgrade]

A Study of Buspar and Melatonin having an effect on the hippocampus/dentate gyrus/neurogenesis and subsequently MDD:

A Pilot Study of a Novel Drug Combination in Major Depressive Disorder

Maurizio Fava, M.D.

Massachusetts General Hospital, Boston

BCI-952 is a novel combination drug therapy, discovered using a proprietary pre-clinical neurogenesis platform

(developed by BrainCells Inc., San Diego) that seeks to enhance the neurogenic profile of candidate drugs. We are

reporting the first study to evaluate the clinical application of this unique drug development platform in a patient

population. One hundred forty-two patients meeting DSM-IV criteria for Major Depressive Disorder (MDD) consented

to participate in a 6-week double-blind, placebo-controlled, randomized study of BCI-952. Efficacy measures

included the Clinical Global Impressions Scales for severity and improvement (CGI-S and CGI-I respectively), the

Inventory of Depressive Symptoms (IDS-C30), and the patient-rated QIDS-SR16. Spontaneously reported adverse

events were recorded.

Patients receiving BCI-952 achieved statistically significant improvement compared to the placebo on multiple

measures of efficacy. For example, in a preliminary analysis, 39 of 67 (58%) BCI-952 patients achieved CGI-I scores

<2 in contrast to only 12 of 33 (36%) placebo patients (Fisher’s exact test; p<0.05). Patients in the BCI-952 group

revealed significantly greater improvement on the IDS-C30 than placebo patients (p<0.05). Side effects were

minimal and not different between any group.

We believe that this pilot study represents the first demonstration that rational drug discovery utilizing a pre-clinical

neurogenesis platform can be applied to the treatment of MDD.

Learning Objectives:

• Learn the results of a placebo-controlled study of a novel combination therapy for depression

• Learn about the tolerability of this combination therapy in depression

Literature References:

Santarelli L, et al. Requirement of hippocampal neurogenesis for the behavioral effects of antidepressants. Science

2003;301:805–59.

Malberg J, et al. Chronic antidepressant treatment increases neurogenesis in adult rat hippocampus. J Neurosci

2000;20:9104–10.

(somewhat negligible results)

[*****Let me also add (as an edit): Buspar doesn't work with GABA like benzos and it is found not to help in benzo w/d]

[rollingregret]

This post has been promoted to an article

[mgrade]

In 40 years, my friend would never prescribe more than 3 mg. Now the drug does "nothing" for you, because you have this huge tolerance.

...........12 years of generalized anxiety disorder, 12 years of depression, 6 years of panic attacks, 6 years of dr/dp (on and off). Trails, Photosensitivity, cognitive dysfunction, hallucinations, aura, headaches, starbursts, etc.

[VisualDude]

He had concluded that since my debilitating symptoms were the physical, muscle tension, head pressure, dizziness type, the are NOT part of HPPD and that I have a migraine problem ... It's the last part that REALLY bothers me. Seriously? This is not-HPPD related?

One issue is that he has to diagnose you with something. And the exact technical definition of HPPD does not include the physical pains you experience. So he must either diagnose you with multiple things or with something broader. This is one reason I define HPPD as a type of toxic encephalopathy (mild brain injury from chemicals) -- and this type of diagnosis opens the door for docs to try different meds such as dopamine agonists or antiseizure.

However, was not aware that [persistent?] Migraine diagnosis included physical, body symptoms (other than headache) anymore than HPPD does ??? And how would Klonopin help migraine ... and it is the #1 for HPPD?

You list muscle tension in neck, back, forehead; dizziness, head pressure - these can cause very bad headaches. But aren't your visuals very HPPDish? Would you list them again (even though you say they are the least bothersome)?

Please somebody tell me I'm going to find a way out of this mess.

You will, but the path remains unknown until you do. Gosh, that almost sounds Hindu or something.

Last spring my responses to both Gabapentin and Klonopin changed. Don't know why. In short, there is less benefit and more sideeffects. This is irritating but typical of long term use of a med. Hence trying Keppra again. And then on to others.

Since you have physical pain, have you tried Tramadol or Vicoprofen? If so, what was your response.

Sometimes it is a shell game with meds. I can take a Vicoprofen tablet and cut into quarters. Take throughout the day and not need any Gabapentin. But in about 3 weeks, don't quite feel right and switch back to Gabapentin. So an opioid temporally replaced an antiseizure. However, could not discontinue Gabapentin while trying Keppra - an antiseizure with an antiseizure.

Perhaps introducing the idea of mild brain injury to the upcoming doc. Oddly psychiatrists are usually more useful than neurologists. They do train at the same schools, at least in US. Again, a doc familiar with the oddities (and treating) brain injury could be the most helpful.

[VisualDude]

Talk about nice hips...........F-this, I'm moving to Canada .....lol

I think i'd be seeing auras without HPPD.....lol

There is quite a history to the discovery of this RESET button.

Child prodigy, Orville P Vunder[bar], developed the first working model in his basement, utilizing parts left over from Eli Whitney’s Cotton Gin – note: you cannot drink Cotton Gin http://en.wikipedia....wiki/Cotton_gin

Immediately ensuing was one of mankind’s bloodiest eras as nations sought to gain control of this awesome new power!

O.P.Vunder quickly fled his country seeking refuge in Eastern Europe. And most cleverly hid his invention in open view…

[VisualDude]

Great violence engulfed this haven as subliminal, partial "resetting" occurred at random. Civil war ended the very day O.P.Vunder was captured and lady justice tore out the secret of the hiding place of the reset-button. Peace and celebration filled the land.

Later, at the war crimes tribunal in which O.P.Vunder was held accountable, his only defense was that "My dog ate my homework."

After examining the shattered remains of this former haven, the tribunal decided the best camouflage would be to grant custodial keeping of this device to the mountainous terrain of Canadian Territories where it could be more easily concealed. Hence the lovely lady guards. http://en.wikipedia...._Mounted_Police

[VisualDude]

No actual pictures were ever kept of this devastating device. Records were burnt and the scientists who carefully handled and evaluated it were quickly silenced. Those not to be detoured, persisted in trying to unlock its secret though being denied actual access to the genuine reset button.

One day upon close examination of O.P.Vunder’s hat, they found a micro-dot. Serendipitously, this lead to the first real attempts at documenting "Visual Snow", HPPD and OCD - all thanks to O.P.V.

So people of all nations can sleep safely at night knowing that nobody is going to "reset" them. Rouge countries have attempted to develop their own version. But all attempts have met with failure … so far …

[VisualDude]

To detract people from knowing about this weapon of mass destruction, propaganda has been spread to raise doubts that such a device ever existed. Detractors now include threats about how each nation will manage their budget problems (USA, PIIGS, and others) and other terrors such that most of the population has simply forgotten about the reset button. Further reports from United Press International have been supressed. http://www.upi.com/

[mgrade]

It took me a while to realize it's total BS.......lol

I feel like the bearded guy with the hammer .....lol

I'm into seeing some "mounted police".......lol

[VisualDude]

It took me a while to realize it's total BS

Shows how much cognitive damage we all suffer. Or perhaps, the whole reset discourse shows how much cognitive damage I have. Guess I got a little carried away into la la land - too many old news reels...

Besides, thought Jay might enjoy a few more details

[mgrade]

Listen Visual...........you know Hope1 ....right?......he's down on his luck big-time....................if you get to talk to him try to cheer him up [he's really fallen- (falling-) off]

[mgrade]

Visual and crew----->Check out Arnie Lerma, Morello/Moore, 10cent lemonade, and Father john:

http://hppdonline.com/index.php?/topic/723-new-to-the-site-is-there-hope/page__fromsearch__1

[rollingregret]

One issue is that he has to diagnose you with something. And the exact technical definition of HPPD does not include the physical pains you experience. So he must either diagnose you with multiple things or with something broader. This is one reason I define HPPD as a type of toxic encephalopathy (mild brain injury from chemicals) -- and this type of diagnosis opens the door for docs to try different meds such as dopamine agonists or antiseizure.

However, was not aware that [persistent?] Migraine diagnosis included physical, body symptoms (other than headache) anymore than HPPD does ??? And how would Klonopin help migraine ... and it is the #1 for HPPD?

You list muscle tension in neck, back, forehead; dizziness, head pressure - these can cause very bad headaches. But aren't your visuals very HPPDish? Would you list them again (even though you say they are the least bothersome)?

I don't think he really had to diagnose me (he had previously done so as having HPPD) as much as suggest alternative courses of action in the face of a benzo treatment failure. I went to him because the first time I saw him he talked about how tolerance doesn't exist, he could pull people off and on klonopin, no problems. So, given that I had been creeping back up and not getting the effects he so brazenly assured me I would get, I wanted to talk about how to get my GABA system back in order. I should note that I don't think I developed the canonical version of tolerance. This happens when people are on a stable dose that stops working for them. In my case, I was on a stable dose and the cutting is what led to a destabilization that was not rectified by increasing back to the original dose, 5 months later.

Anyway, as for my visual symptoms, they are evidence that my disorder is HPPD. Visual snow, slight after imaging (not as bad as to be trails), aeropsia, floaters, pixelation, movement in the visual field (Dr. A believes it to be a defect of the peripheral vision systems). So, fine, that might encompass the DSM IV definition of HPPD, BUT it is almost always accompanied by additional symptoms (not surprisingly) and most often they are anxiety based. I am certain that my physical symtoms related to HPPD work in an anxiety-related pathway. The only thing missing is the psychological anxiety. Many people with DP/DR experience these physical symptoms (along with psychological anxiety) and many strictly HPPDers do as well. I remember the number of posts about head pressure on the old boards. This is clearly something that is strongly correlated with HPPD (onset is simultaneous). Klonopin, as a calming agent, reduces the anxiety-related excitation and it makes perfect sense that it would very effective at removing them (hence its popularity with HPPD sufferers). I wouldn't call any of these symptoms headaches. They're more akin to tingling, band-around-the-head, tension headaches (which are not headaches). People who have mild anxiety experience these and can dispatch them using relaxation techniques. For me, it's a chemical imbalance keeping the "stress" permanent and strong. The shoulders, back, neck muscle tightness is also extensively documented to be a symptoms of anxiety (hence why stressed out people go for massage therapy). The difference here is that it's a permanent state versus a situation one. Anyway, just to explain that these are in no way headaches in the conventional sense and certainly NOT migraines. They also happen to be VERY common symptoms of benzo withdrawal. My problem with his migraines theory was that I was not describing any sort of headache, that I was describing typical somatoform (he COINED the term himself!, meaning physical) symptoms of anxiety and that since he couldn't conclude that I was still in benzo wd (since he doesn't believe in it ), he passed it off as something else.

While I'm sure klonopin is not the only solution (although it's the most effective), it's certainly hard to figure out what would help since one has to look for drugs that affect the anxiety pathways. Two members of the board made drastic cuts, had awful wd symptoms (benzo) that took 3-4 months to resolve. Big difference - they jumped back up to their original dose within 1-2 weeks. That is held as a general limit for the amount of time after which jumping back up will not likely help. For me it was 5 months (until I could convince my GP that I was not recovering from the cuts and that my original condition was real). I can only hope that the time element will help restore the effect of klonopin. I don't think I'm tolerant absolutely since increasing the dose has given me incremental success (but in no way proportional to what I would expect). My receptors sure have been altered. The question is whether they can return to a state where the drug does help more than it does now (as in those two cases).

If one takes the Gabapentin route, do you have to go from 300-900/day and increase up to 3600 or does do doses like 900/day work long term? I imagine the higher you go, the worse the side effects.

[mgrade]

You know what they use for benzodiazepine withdrawal: Valium......................What a joke!.......I guess it's like the benzo-equivalent to methadone (for heroin addiction).

[mgrade]

This is what they say about Benzo Detox: "This can lead to collapse of marriages, business failures, bankruptcy, committal to a hospital and the most serious adverse effect, suicide." --------Sounds positive.

...Anyway slow w/d is like 65-100% success supposedly.

[rollingregret]

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!