advice about dose correction following a rough dose reduction

[[ro...]]

Hi all,

 

I've posted about my situation in another thread, but it was more dealing with the ordeal of another Benz warrior, ld1 who is having a tough time of it. Instead of hijacking her thread, here's one that I hope you can all help me with.

 

I've been on clon for a little over 4 years for a chronic condition called HPPD. It's symptoms are identical to acute benzo withdrawal which makes distinguishing between them very difficult.

 

My stable dose for most of the 4 years was 4mg and I never developed any tolerance. It really kept my disorder in check and has worked wonderfully for me.

 

March of 2011: A new doctor who took over my file didn't really get the whole HPPD thing, didn't think I need to be on the benzo and said I should start cutting. I cut from 4 to 3.5mg and although I experienced some pretty acute wd, it settled within 10 days. I was fully "stabilized" and I use that term to mean that I felt good, as much as I did on 4 and that my condition was being effectively treated.

 

December 2011: She wanted me to cut more despite my hesitation. Because it was around the holidays, I decided to try and cut as much as I could within the prescribed guidelines.

 

As you can see in my sig, I cut less than 10% three times, the cuts spaced 10 days apart (overall, about 20 days of tapering).

 

I was then at 2.75mg and I wanted to hold because the symptoms seemed to be getting quite pronounced. During the previous cuts, I felt bad on day 4 through day 9 and seemed to come back to a stable point by day 10. Not understanding that waves are a part of this and that one's wd oscillates, I assumed I was fine at the end of each of the 10 days, thus justifying my next cut and preventing me from truly knowing whether I had stabilized (I had one good day, thought all was gravy, cut again).

 

As a result of stopping at 2.75 on around christmas and waiting to stabilize (i.e. to return to the baseline that I had experienced dropping from 4 to 3.5mg), my acute symptoms of muscle tension and blurry vision (which are major symptoms of my disorder) have been replaced by another category of symptoms - light headedness, tension headaches, dizziness, dissociation, brain buzz and generally not feeling like I'm "there". These are also symptoms of HPPD that were well-treated by my 3.5 dose, but after waiting for 9 weeks to stabilize at 2.75 I finally went back to my doc and told her that this doesn't seem to be a good situation and she allowed me to dose correct back to 3mg. This still represents a drop of 0.5 from 3.5 (my initial dose before this taper).

 

I should state that my goal is not to completely taper off clonazepam as it is for most, since the medication does work for me and the condition is far worse than any symptoms clonazepam can cause through side effects (which were unnoticeable to me) or wd.

 

So...it's obvious that 2.75 is not able to contain my symptoms, but it could also be that my taper was too rapid for me, personally and my previous successful drop from 4 had given me false hopes of recovering so easily.

 

It has been 10 days since I dose corrected from 2.75 to 3mg and I have not had any noticeable relief. Maybe one of those days was better, but it was two days ago and I am again plunged into feeling like crap. While I know most don't believe in the concept of being on a "stable" dose (as I defined it), just a bearable one, my goal is to return to a dose that manages the symptoms of my disorder.

 

Some of my concerns after reading a lot of stuff on these boards:

 

1) dose correction should occur within 2-3 weeks of acute symptoms (in my case it was 9). I should point out that Ashton talks about this type of correction citing the example of doing so after two months of not finding any relief through stabilization and it ostensibly working.

 

2) 3mg might not be enough to return to my baseline even after giving my system enough time to activate more endogenous GABA activity. Presumable, since I've been tapering, my receptors have been trying to upregulate their drug-independent activity. Thus, one would hope that they've produced enough to make 3 sufficient. Then again, maybe 3.25 or even 3.5 (my last truly stable dose)is what my brain requires. Not waiting after dropping from 3.5 to 3.25 for more than 10 days has prevented me from getting a good read on that.

 

The questions I have (although any insight is appreciated) revolves around what my next steps should be to get back to a stable dose. I know I'll hear "you never really stabilize", which in my case has proven to be untrue for the better part of 4 years and also after a greater than 10% cut to 3.5 (I did stabilize just fine then). Should I try to wait longer to see if 3 does the trick? Is this a possibility, that it takes awhile to adjust to your new dose despite the fact that within 3 days one should feel it?

 

Have I dose corrected too little? My intention was to increase the smallest amount possible although perhaps increasing so little is not likely to be effective at improving my symptoms.

 

In the end, once my underlying condition lessens in severity, whenever that may be, I want to taper off, but for the time being I think I've learned a lesson about being too eager to reduce -- it can seriously mess with your GABA system. Getting off the drug will do nothing to help my condition and unlike a lot of other ailments, this is the only proven treatment for mine. I'd just like to get an idea from people who have had similar experiences in dose correcting after a rough taper or hitting a wall.

 

Thanks in advance for your help, I'm really struggling here!

 

Rollin

[[Be...]]

Hi, rollingregret.

 

First, I really sympathize with your situation.  I know that benzos certainly have a place in medical treatment although I do think that over time they can become a liability.  As you probably already know, they are intended to be taken for 2-4 weeks max. 

 

I really don't know how to advise you about going back up in dose.  All I could find in The Ashton Manual talked about stabilizing was this: "The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not."

 

I guess you could try going back up the way you came down, waiting a week to 10 days between increases.  Is your doctor no help at all on this?

[[ro...]]

My doctor knows as much about benzos as anyone who reads the stickies on this board, probably less, cuz this board is packed with actual real-life information.

 

She's the one who basically made me start cutting from a point of complete stability. There was no need to cut except to try to see if a lower dose would be able to treat my symptoms. It seems this experiment has failed. She let me go back 1 step out of 3, but I don't think she's in favour of going back to the stable dose even though I'm not asking for an actual updose, just the same dose I've always been on (actually I've been on a higher dose for most of the time). The issue really is that if I am to taper, I have to do it slowly, but from a point of comfort. I really don't buy into the whole "nobody truly stabilizes thing", which I have read from Ashton, only because I and several other people I've spoken to, even someone who has my condition did stabilize after a period of time post cutting. This is obviously going in the reverse direction, but one would imagine that if I had not developed tolerance then, that I should be able to go back to an old dose, or even one a little bit lower (going back 2/3 of the way).

 

The problem is that I get the idea that the longer you hold for to wait for your brain to catch up, at a certain point it just changes your GABA system altogether. 1 month, mayybe 2 months of holding fine. I went 1 week more than that and I feel as though it has caused some damage to a previously responsive system, treated well with clonazepam.

 

Again, my intention are still in keeping with the idea of this board: not to go above your original dose, but to find the RIGHT dose so that you can taper. Really at this point I'm trying to get an idea of how whether dose correction itself takes awhile to take effect although logic tells me it should resolve within a few days. Then again, I only increased it by 1/3 (of the amount I've tapered since I was last A OK), so might it take longer? I'm actually trying to hold OFF on increasing to 3.25 rather than just doing it. I'll be going back to see her in 2 weeks because acc. to her (and this is completely out of thin air, not based on anything)  it takes 2-3 weeks to see an effect (again, a fact to which my pharmacist was like http://30.media.tumblr.com/tumblr_lujcm8Ee3G1qhpehmo3_500.gif to.

 

 

anyone know if it takes awhile to see a change? Beeper, you said 10 days. Is it safer to go up before my system just becomes (paradoxically) more tolerant by waiting too long? I feel like swamping it with more benzo will get it back to that place it needs to be to re-start the taper (still from a dose lower than original). Thanks again,

 

Rollin

[[Be...]]

I'm sorry, I really don't know how advise you on this.  I wish I could think of someone else here who has "dose corrected" back several weeks or more but I just can't.  A lot of this is trial and error anyway so if you can't get any solid information/advice for the best way to do this, I'd say follow your instincts and hope. 

[[ro...]]

Thanks Beeper, I know you'd only give me advice if you were sure of it, which would be the responsible thing to do.

 

Hopefully some others who have backtracked on their way down can speak to this. Anyone else?

[[bl...]]

RR

 

I was put on benzos for DP/DR as we have previously discussed. Rather like you I was OK on the drug which was 20mg V. My Dr however wanted me to come off rather like you and yes as I tapered symptoms appeared they could also be benzo withdrawal symptoms who knows. I got to a point at about 6 mg V where I became disfunctional and as I needed to carry on working talked about increasing the dose. I went all the way back to 16mg and it did nothing so I was caught on a much higher dose with the same symptoms. I took the decision to get off and face whatever problems I was left with. I am now at 4mg of V doing a turtle taper and feeling terrible. With outrageous noises in my head.

My take for what it is worth is that benzos are fine if you remain on a stable dose which may need to be inched up due to tolerance, however once you start to reduce the whole picture changes and I am not sure that you can increase and eradicate symptoms that have emerged. Let me know how you get on, because I am with you that in hindsight I should have stayed on the dose that was somehow masking my symptoms.

 

Take Care

 

B

[[ro...]]

RR

 

I was put on benzos for DP/DR as we have previously discussed. Rather like you I was OK on the drug which was 20mg V. My Dr however wanted me to come off rather like you and yes as I tapered symptoms appeared they could also be benzo withdrawal symptoms who knows. I got to a point at about 6 mg V where I became disfunctional and as I needed to carry on working talked about increasing the dose. I went all the way back to 16mg and it did nothing so I was caught on a much higher dose with the same symptoms. I took the decision to get off and face whatever problems I was left with. I am now at 4mg of V doing a turtle taper and feeling terrible. With outrageous noises in my head.

My take for what it is worth is that benzos are fine if you remain on a stable dose which may need to be inched up due to tolerance, however once you start to reduce the whole picture changes and I am not sure that you can increase and eradicate symptoms that have emerged. Let me know how you get on, because I am with you that in hindsight I should have stayed on the dose that was somehow masking my symptoms.

 

Take Care

 

B

 

Hey Blower,

 

I've been off the boards for awhile due to a being crazy busy with trying to see the right docs as well as completing school, sorry for the late reply. It was determined, finally by an expert, that my condition is (as I knew it was before) chronic so I require benzo and FWIW clon has always worked for me. Seems like you had a similar situation to me so I'll just cut to the chase.

 

Since my first post in this thread I've been increasing by 0.25mg/day every 2-3 weeks. I've now reached my original dose (3.5mg/day) which I started exactly 2 weeks ago. My symptoms HAVE improved, but I'm certainly not out of the woods. I'll say this though, last week I actually felt for a good number of days (~5) like I was returning to 95%. It was thankfully on the day of a huge oral exam so good timing. Bad news, in the last few days, that feeling has faded. Now I optimistically think this could be due to two things (not mutually exclusive)

 

1) symptoms oscillate before reaching a point where you feel the way you should. The fact I felt good last week, I hope indicates that I'll feel like that again, I don't think tolerance can build within 2 days.

 

2) the more I've been reading, apparently it takes 10 days to 2 weeks (and in some cases 3 weeks) to reach a steady state level of a new dose, for clonazepam. For Valium this is more like a month - 6 weeks (depends on half life).

 

So my body is both recalibrating its GABA response and the level of the drug is not yet constant in my blood stream (although today it should be reaching it).

 

Reading your post, you said you only started noticing symptoms when you reached 16 from a drop from 20, however IMO it's possible that just like me, you might have started to drop below your tolerance level at 19 (for argument's sake), but you only felt the results weeks later (I really think it catches up to you after months), thus your actual stable dose was probably 20, which you never went up to and stayed at to see whether you'd get better.  Now, I suppose in the spirit of Benzobuddies, getting off is supposed to be a good thing, although I have reservations about that single-minded opinion because for many people they can help and are necessary (and in many cases, one doesn't need them -- point is it's specific to the individual). So you're suffering now and I guess I have to ask, do you think your original/underlying condition is gone? If it's not, getting off isn't going to help. If it is, getting off will help. I guess you've already come to that conclusion since you know your body and history well. Just saying, I think there's a reason I don't feel quite right just yet and why you didn't feel better at 16. I do also think all this mucking about with my benzos, when I never had a problem previously except an ignorant new doctor who was not benzo-friendly, has done a number on my GABA system and it's possible I need a higher dose to reach my baseline again. I'm going to wait this out for a month and then see what recourse I can take. I will keep you posted on whether I progress and I think it will give insights into adjusting to a dose correction as well as to a reduced dose as the issue ultimately here is: duration of time before the brain reaches a constant steady state -- which affects going down as well. I think if one is tapering and THINKS they feel ok and should keep cutting, they might not have actually given their brain enough time. Because the elimination and half life specifics vary from person to person, it could explain varying results with tapering and why some need to take longer. Will post again soon,

 

RR

[[Qu...]]

Hello I know this may come as a surprise...but I had HPPD since I was 5 years old I actaully had for 21 years in total It never really scared me or made me feel uncomfortable as it was something I thought everybody had because I was so young when it started, I noticed that it waxed and waned depending on my stress level, When I hit 26 my HPPD disappeared for 2 years and it made me kind of miss it as I was used to seeing the visuals and colors before I went to bed, but other than that life went on  then I experienced some panic attacks in August 2011 and was put on Benzo's, once I got off my benzo I started to experience Withdrawal which included DP/DR but no HPPD, now I'm 8 months out and the HPPD stated to come back for the first time in 2 years now normally it wouldn't bother me but because I'm still really sensitive mentally because of WD the HPPD freaks me out...Oh my what will my mind obsess over now... it's always something I just thought it was kind of refreshing to know that other people get HPPD even those in wd...I hope it has gotten better for you, I found that ignoring it when it gets really bad by using distraction really helps.

 

Hugs

Nicole 

[[ro...]]

Hello I know this may come as a surprise...but I had HPPD since I was 5 years old I actaully had for 21 years in total It never really scared me or made me feel uncomfortable as it was something I thought everybody had because I was so young when it started, I noticed that it waxed and waned depending on my stress level, When I hit 26 my HPPD disappeared for 2 years and it made me kind of miss it as I was used to seeing the visuals and colors before I went to bed, but other than that life went on  then I experienced some panic attacks in August 2011 and was put on Benzo's, once I got off my benzo I started to experience Withdrawal which included DP/DR but no HPPD, now I'm 8 months out and the HPPD stated to come back for the first time in 2 years now normally it wouldn't bother me but because I'm still really sensitive mentally because of WD the HPPD freaks me out...Oh my what will my mind obsess over now... it's always something I just thought it was kind of refreshing to know that other people get HPPD even those in wd...I hope it has gotten better for you, I found that ignoring it when it gets really bad by using distraction really helps.

 

Hugs

Nicole 

 

Hey QB,

 

I am going to assume that you are one of the rarest of rare people who did not contract HPPD due to exposure to a drug (5 years old, not judging, but...).

 

One thing about HPPD that I've learned over the years is that there are hugggge gradations in spectrum of its effects. Some people get light visuals and call it HPPD, some get heavy visuals + DP/DR + anxiety, some get visuals + physical symptoms (like me). People on a lot of the "drug boards" like blulite are ridiculously misinformed about HPPD and just call it a cool trip and that one is lucky to have it. They don't realize that most people who have tried synthetic drugs or even weed/shrooms develop alterations to their vision. It's only technically HPPD if it impairs your quality of life. If one enjoys it or doesn't mind it, by definition in the DSM IV, it's not HPPD.

 

I suppose in your case, originally your "HPPD" was just visuals (correct me if I'm wrong) that didn't bother you (since you actually missed it!)

Later you started to experience panic attacks, which is where I think it starts actually being HPPD if they are linked. As is my case, the visuals have (over time) ceased to bother me, it's rather the comorbid physical symptoms that have been unbearable (and there's an anxiety link to them). It's possible that your anxiety came out of nowhere (not HPPD-linked), but then the WD of benzos caused the visuals that you HAD previously to emerge into real HPPD. I notice a lot of people's WD symptoms mimicking the symptoms of HPPD so there's certainly a link between the pathways governing GABA's calming effect and HPPD's excitation effect.

 

You're absolutely right that obsessing over it makes it SOO much worse. That's partly why klonopin works so well -- it takes away the majority of negative feelings (sometimes completely) so that the sparkles and pixelations and floaters don't matter at all. The problem is when that effect is removed, as has occurred by trying to cut my klonopin, when in fact I might need it at my original dose (that I just got back up to after 5 months). I hope things improve for both of us and I think it's better if you don't require pharmacological intervention to treat HPPD (but everyone is different). I guess your wd symptoms will include visuals (i.e. HPPD) because they previously were an underlying sensitivity. Hopefully you don't have any of the physical symptoms -- those are what are really preventing me from feeling ok although lately it's been somewhat better. I'm trying to be optimistic. I think I can reverse the taper and get back to baseline even though it goes against conventional wisdom around here. One topic that isn't discussed here that is one line in the Ashton manual is what to do when relapse of an underlying condition emerges (and that it's not withrawal). It says consult with your doctor to figure out further steps. Well...it might be too late at that point and I think she's somewhat careless in essentially suggesting that you can't use benzos therapeutically long term. There should be a section in her manual about not trying to get off (or doing it with a disclaimer) if you have had successful treatment of a rare disorder or at least knowing the risks (like permanent neural adaptation making you refractory to benzos).

 

Anyway, you're 8 months off, quite an achievement and since you were able to deal with your visuals without benzos, I think you'll recover just fine without them.

 

 

Rollin

[[Qu...]]

Thanks Rolling,

HPPD did scare me to a certain point when I was young but when I started to get upset about it, my father told me that he had it too ( even though he didn't) so for some reason that made me not afraid of it...I became an artist and often would recreate my designs that HPPD would give me... Yes I totally believe that wd made it return and no I wont be visiting my doctors about it....I know they have no answers for me anyways ..I was born that way to some degree, and it only happened when I would go to bed I would see geometric patterns colors and swirls on the walls and blankets and behind my eyes I knew if I was thinking hard about it it would make it worse so I have always embraced it like a meditation I know it's not real. I have noticed that since wd anything makes me afraid or obsessed even the most normal of bodily functions freak me out but regardless of all this It just seems to be the nature of w/d

 

Nicole