What to do? Help needed.

[[po...]]

Yes, he was the one who suggested progressively updosing from 6 to 7.5mg.

[[Pa...]]

That's right, I remember reading that when I was going over your previous posts to refresh my memory, my apologies.  I can see you're conflicted about what to do and I wish we could be more helpful. 

[[Li...]]

Based on what you’ve shared, it sounds like underdosing may be a possibility in your case.

 

You might find the last two paragraphs in the Miscellaneous Notes section of the web page linked below of interest.  The page is from Dr. Reg Peart’s Benzodiazepine Withdrawal Support website.  Peart was a benzodiazepine withdrawal survivor who then dedicated himself to helping other individuals who wished to discontinue their benzodiazepines. He died in 2009 but his work lives on via his website.

 

Link:

Crossover Schedules

http://www.benzosupport.org/crossover_schedules.htm

[[Ta...]]

Hi, it sounds by your history that you reach tolerance WD fast. I have found by microcutting, this keeps my body mostly out of tolerance. I held for three weeks once and felt awful so the only way out is off.

[[po...]]

Based on what you’ve shared, it sounds like underdosing may be a possibility in your case.

 

You might find the last two paragraphs in the Miscellaneous Notes section of the web page linked below of interest.  The page is from Dr. Reg Peart’s Benzodiazepine Withdrawal Support website.  Peart was a benzodiazepine withdrawal survivor who then dedicated himself to helping other individuals who wished to discontinue their benzodiazepines. He died in 2009 but his work lives on via his website.

 

Link:

Crossover Schedules

http://www.benzosupport.org/crossover_schedules.htm

Thank you Libertas, this is interesting.

 

I did not know that a rapid crossover was preferable, but it makes sense that the longer one takes to cross over, the more likely tolerance is to happen. If I do updose, I will do it faster than the schedule I wrote in my previous post, as Dr Peart advises.

 

That said, Dr Peart also advises:

3. After the changeover, wait about 4 weeks before attempting to reduce the dose slowly. If you feel very comfortable after 2 to 3 weeks, go ahead with the next step.

 

So it seems to me that I have in fact followed what he advises — I switched over rapidly from zolpidem from Valium (I went cold turkey with zolpidem, then 10 days after immediately went to 5mg Valium), and then I have been waiting for 4 weeks. Now, though, if I am following along correctly, this means that I fall under Dr Peart’s category of people who have “hit the wall” holding at their current dose for a while and who should consider updosing.

[[po...]]

Hi, it sounds by your history that you reach tolerance WD fast. I have found by microcutting, this keeps my body mostly out of tolerance. I held for three weeks once and felt awful so the only way out is off.

 

Indeed, I seem to reach tolerance quickly. The therapeutic effects of zolpidem had vanished by day 10-11 and those of Valium (when I crossed over) by day 7-8. Thankfully my tolerance WD symptoms do not seem to have increased much even though I have been holding for 5 weeks.

[[Li...]]

Thank you Libertas. This is interesting.

 

I did not know that a rapid crossover was preferable, but it makes sense that the longer one takes to cross over, the more likely tolerance is to happen. If I do updose, I will do it faster than the schedule I wrote in my previous post, as Dr Peart advises.

 

You’re welcome, potatosaur.  To my knowledge, we do not have credible evidence to support the claim that Dr. Peart’s rapid crossover was/is preferable to Dr. Ashton’s approach.  He simply had a different opinion based on his interpretation of the literature and experience.  Per his web page cited above:

 

Dr. Peart is not suggesting a new ‘method’ of tapering that contradicts Dr. Heather Ashton.  Roche’s drug literature advises a more rapid crossover.  And Dr. Ashton has always said that each person should adjust the sample schedules as tolerated.

 

Many lay people advise slowing down the crossover when one feels worse.  Dr. Peart does not agree with this and in fact believes that it keeps the person in high tolerance w/d even longer and for no medical reason. 

 

As I know you recognize, you are the only one who can decide how to proceed (i.e. continue to hold, updose, begin tapering).  Have you considered constructing a pro/con (risk/benefit) list for each of your possible courses of action to aid your decision-making?

 

Addendum:  I agree with your latest analysis of Peart.

 

[[po...]]

As I know you recognize, you are the only one who can decide how to proceed (i.e. continue to hold, updose, begin tapering).  Have you considered constructing a pro/con (risk/benefit) list for each of your possible courses of action to aid your decision-making?

I have. Continuing to hold is not an option I want to pursue. It is either tapering down from 5mg now or updose to 7.5mg.

 

If I start tapering now, given that I still have tolerance withdrawal symptoms, I might simply not be able to bear the increase in symptoms (including those that are gone but will return, e.g. insomnia, anxiety, agitation) as they act in synergy with/potentiate those of my chronic illness. I quit zolpidem cold turkey for 10 days, but my chronic illness worsened from the toll it took on my body — even after 5 weeks I have not recovered from it.

 

If I updose, I may start from a less symptomatic point and this would probably make the beginning of the taper easier. However, I have no guarantee that 1) it will ease the current symptoms, 2) make the whole taper easier and 3) the taper will take longer. Also, as I will take more time to taper, tolerance might be a problem — what if I have worse symptoms at 5mg if I taper down from 7.5mg than I do now?

[[Ha...]]

As I know you recognize, you are the only one who can decide how to proceed (i.e. continue to hold, updose, begin tapering).  Have you considered constructing a pro/con (risk/benefit) list for each of your possible courses of action to aid your decision-making?

I have. Continuing to hold is not an option I want to pursue. It is either tapering down from 5mg now or updose to 7.5mg.

 

If I start tapering now, given that I still have tolerance withdrawal symptoms, I might simply not be able to bear the increase in symptoms (including those that are gone but will return, e.g. insomnia, anxiety, agitation) as they act in synergy with/potentiate those of my chronic illness. I quit zolpidem cold turkey for 10 days, but my chronic illness worsened from the toll it took on my body — even after 5 weeks I have not recovered from it.

 

If I updose, I may start from a less symptomatic point and this would probably make the beginning of the taper easier. However, I have no guarantee that 1) it will ease the current symptoms, 2) make the whole taper easier and 3) the taper will take longer. Also, as I will take more time to taper, tolerance might be a problem — what if I have worse symptoms at 5mg if I taper down from 7.5mg than I do now?

 

Sorry to hear you're still not stabilizing

 

Just my 2 cents worth. You have held at 5mg for a while now, and you aren't feeling the benefits, so I would personally updose to the 7.5mg. I know it's difficult not to worry, but you must remember your anxiety is heightened at the moment. You're already in WD and facing possibly a long taper. At least if you can find relief at 7.5mg it will give you some breathing room. Things will look different once stable and you can plan getting off with a clearer head. I'm sure the anxiety and stress WD is causing is causing difficulty with your other health issues.

[[po...]]

Thank you for your advice, Having a mare. Yes, the anxiety of thinking about the taper is messing with my chronic illness.

 

I have held back on updosing principally because of what is stated on the BenzoBuddies page about tolerance withdrawal:

 

“If you experience withdrawal symptoms before starting your taper - that is to say, Relative Withdrawal symptoms - all you can do is withdraw at a sensible taper rate. (…)

If you experience no relief after stabilising your dose for some time, you have probably developed Relative Withdrawal symptoms. In this unfortunate situation, all you can do is continue to taper off at a reasonable and tolerable rate.” http://www.benzobuddies.org/benzodiazepine-information/tolerance-and-dependency/

 

But I am not sure this takes the case of potential underdosing when crossing over. It seems to be aimed more generally at people who are either already tapering, or who have been on benzos but have not started tapering or haven’t crossed over.

[[Ha...]]

Thank you for your advice, Having a mare. Yes, the anxiety of thinking about the taper is messing with my chronic illness.

 

I have held back on updosing principally because of what is stated on the BenzoBuddies page about tolerance withdrawal:

 

“If you experience withdrawal symptoms before starting your taper - that is to say, Relative Withdrawal symptoms - all you can do is withdraw at a sensible taper rate. (…)

If you experience no relief after stabilising your dose for some time, you have probably developed Relative Withdrawal symptoms. In this unfortunate situation, all you can do is continue to taper off at a reasonable and tolerable rate.” http://www.benzobuddies.org/benzodiazepine-information/tolerance-and-dependency/

 

But I am not sure this takes the case of potential underdosing when crossing over. It seems to be aimed more generally at people who are either already tapering, or who have been on benzos but have not started tapering or haven’t crossed over.

 

Yes, this is more for people that have been at a certain dose for a while, be it months or years. It's not always the case, but for some interdose WD can happen when they reach tolerance.

 

Your case is different IMHO, you are still in WD from the CT, and reinstating to 5mg hasn't been enough to help with symptoms. Valium is a long acting Benzo, so you shouldn't be getting interdose WD if your dose was correct. With some people it could be best to just pull the bandaid off and taper. But you have other health issues you need to be thinking of. At the end of the day, you will have to slowly taper, and I personally think it would be beneficial to you and your other health issues to stabilise. It may take you a little longer, but there's more chance of an easier time starting from a stable point.

 

I understand your concerns, but I don't think staying at 5mg is helping your WD or other health issues. So updosing seems to be the best option from where I'm standing

[[Li...]]

Tip of the hat for your pro/con analysis and for making a decision (i.e. continuing to hold is not an option).  Generally speaking, it’s preferable to begin a taper from a point of stability.  Given the case history you’ve shared with us, it seems unlikely that initiating a taper will help you stabilize; in contrast, updosing might.

[[po...]]

One of the primary features of my disease is its relapsing-remitting nature, with violent flares of symptoms or “crashes” that follow overexertion and that take at least a few days to recover from. These crashes also intensify the withdrawal symptoms significantly.

 

So far, I had not given enough thought to what being “stable” with regards to the benzo situation means in this context. I now believe that it should mean that even when I am in a crash, the withdrawal symptoms should 1) remain tolerable and 2) not stopping me entirely from functioning. This is hardly the case with the 5mg dose.

 

Updosing to 7.5mg to attempt stabilization seems like the most reasonable and bearable way to handle the situation.

 

Unfortunately, it seems that having been at 5mg for 5 weeks, some withdrawal symptoms have intensified (auditory hallucinations and tinnitus) and two previously gone havd slightly returned (muscle twitches and dizziness). I think I may be experiencing some degree of tolerance withdrawal now on top of the underdosing in the first place, and I am concerned that it will happen again after being at 7.5mg for a few weeks. However, having had two successive crashes in 2 weeks, it is hard to tell what is what (or both).

[[Li...]]

It sounds like you are literally in between a rock and a hard place with respect to your chronic illness and benzodiazepine withdrawal. :'(

 

Are you taking medications for your chronic illness?  Is there any chance one or more of them may be interacting with the diazepam?

[[po...]]

I am between a rock and a hard place. A fellow patient who weaned off of diazepam after 20 years of usage and now additionally suffers from post-withdrawal syndrome told me to get used to being in hell.

 

No interaction that I know of - propanolol, montelukast (tapering currently, no apparent withdrawal symptoms), ebastine, hydroxyzine, famotidine (hours before diazepam), low dose doxepin (20mg).

[[po...]]

I have begun updosing to 7.5mg. If the tinnitus, auditory hallucinations and visual flashes do not improve enough within 10 days, I may have to consider updosing again to 10mg. Unfortunately this would indicate I’m in tolerance withdrawal, which I believe I may be, and should instead start tapering.

[[po...]]

I am now getting anxiety attacks (not full blown panic, but still). Is this expected from updosing?

[[Pa...]]

I have begun updosing to 7.5mg. If the tinnitus, auditory hallucinations and visual flashes do not improve enough within 10 days, I may have to consider updosing again to 10mg. Unfortunately this would indicate I’m in tolerance withdrawal, which I believe I may be, and should instead start tapering.

 

I think going up to 7.5 is a good idea but instead of thinking about what might happen in the next 10 days, it would be better to proceed as if this is going to work.  I know this is really difficult because we have so much fear and uncertainty but living in tomorrow is certain to bring on more anxiety.  I feel too that trying to figure out if you're experiencing tolerance withdrawal is causing you some distress and it doesn't need to, putting a label on what you're experiencing isn't really necessary, you know how you're feeling and you're taking steps to correct the situation. 

 

Lets take one step at a time and keep our focus on what you're doing to help yourself and that's upping your dose to 7.5.  And another suggestion if I may, I know we seek out others who are going through this or have gone through it, but try not to make their story yours.  I'm sure your fellow patient meant well but a positive attitude can be an aid to your recovery.

 

Let us know how the up-dosing goes, I'm hoping you feel some relief.

[[po...]]

Thank you for your helpful advice, Pamster. I have tried to think less about all of it while the updosing was setting in.

 

I’m on day 9 of updosing, and it is safe to say that it has definitely brought me relief. I am in a very tolerable state.

 

First of all, I must report that I did not experience therapeutic effects from updosing*, save for some sedation the first two days which did not stay longer than that. I have only had a reduction in what I now feel I can state are tolerance withdrawal symptoms.

 

The shrieking tinnitus is milder and not piercing my head anymore, although it is still “in the foreground”. I would say that it is as if the crickets decided to calm down.

 

Regarding my auditory hallucinations, most have been pushed “into the background”, except for the choir type voices (they sing “oh wow-wow-wow… oh wow-wow-wow”) which accompany the tinnitus at about the same noise level. For some reason, these two seem to be paired together. The auditory hallucinations in the background are very mild. I would not say they are imperceptible, and they are still present even if I don’t focus on them, but they are not loud at all (something like a 2 or 3/10). This is the case for the loud train horn that I used to get. Some sounds are no longer present, notably alarms/sirens and the loud “bangs” as if someone kicked into a door.

 

The blinking lights and visual flashes when my eyes are closed have become less frequent and much milder.

 

The few infrequent and mild muscle twitches that I had are gone for now.

 

The mild hot flushes / night sweats as I tried to fall asleep are gone too.

 

The mild trembling of the extremities (forearms and hands, calves and feet) and internal vibrations synchronized with my heartbeats (as if my heartbeat rippled through my body) are gone.

 

The mild pangs of anxiety that had seemed to come back the last 2 weeks of holding at 5mg are gone. I am not agitated or restless either.

 

I do not have dizziness/vertigo nor withdrawal-induced insomnia, though neither were present at 5mg. (I still experience bouts of insomnia from my disease.)

 

In hindsight, I am now confident that my symptoms did increase throughout the time that I was at 5mg (5 weeks total), especially in the last 2 weeks. That is because now that I am less symptomatic, I remember having felt as good / less symptomatic after the 5mg dose had settled in (1 week into it) than the weeks that followed. Unfortunately, I believe this is indicative of tolerance withdrawal.

 

Therefore, I will not be holding long at 7.5mg. I will be monitoring for the return or intensification of the aforementioned symptoms. I am waiting for the equipment needed for my liquid micro taper to arrive this week and I will start ASAP.

 

* Edit: I might be mistaken in saying this for two reasons.

 

1. Benzos are known to help reduce the severity of crashes and/or insomnia resulting from overexertion in people with my disease. For some of them, they also increase their tolerance to exertion. They are occasionally used to get through a tough crash or before special occasions which are expected to require overexertion.

 

While I have overexerted myself significantly throughout the first week of updosing, I have not crashed (yet). Crashes systematically kick in 24-72h after overexertion, but I am past this delay and it has not happened so far. This is extremely unusual.

 

2. I feel a general sense of calmness. I think this is my normal state of mind but it could be influenced positively by diazepam.

[[Pa...]]

Thank you for the update potatosaur, I'm pleased you've been able to detect some relief.  You did a calculated up-dose after giving it much thought and it appears you've discovered some important information.  This is a treacherous experiment and unfortunately, we're the subjects.

[[po...]]

And so it begins.

 

My progress log: http://www.benzobuddies.org/forum/index.php?topic=268079.msg3372011

[[po...]]

If I am in tolerance WD (not now but it should catch up soon as it did with 5mg), is 0.5mg a month too slow of a reduction?

 

I am planning/hoping to decrease by 0.5mg per month until 6mg, so between 6.7% and 8.3% per month.

[[Ha...]]

If I am in tolerance WD (not now but it should catch up soon as it did with 5mg), is 0.5mg a month too slow of a reduction?

 

I am planning/hoping to decrease by 0.5mg per month until 6mg, so between 6.7% and 8.3% per month.

 

I'm not really up on the tapering side of things, you may want to start a new thread in the tapering section. But I don't think there's such a thing as too slow, you need to make things as easy as possible IMHO. I've seen people mention the microtaper titration taper can work well, I wouldn't rush, ask plenty of questions on the relevant boards

 

Good Luck