Hello

Hi everyone -- I'm currently beginning my fourth month of a planned direct taper off of clonazepam, which I have been taking every day for roughly 4.5 years (at daily doses ranging between 0.5 and 1mg) as treatment for a panic disorder. I stepped down from 1mg to 0.75mg in mid-Feb; two weeks later, I stepped down from 0.75 to 0.5mg; then, in the fifth week, I stepped down to 0.375. I stepped down to 0.25mg in my sixth week, a little ahead of schedule, because a delay in my prescription meant I might run out before the refill arrived.

Stepping down from 1mg to 0.75 to 0.5 and then to 0.375 was, in general, very difficult but manageable. I felt rebound symptoms for 4-7 days, then felt ok until the next step down. But ever since I've been at 0.25mg, my withdrawal symptoms have been much more difficult -- every day I experience constant parasthesia of varying severity, nausea, muscle pains and twitching, anxiety, stress, etc. My symptoms have been present non-stop for the entire eight weeks that I have remained at my 0.25mg daily dose.

This Saturday, I woke up feeling worse symtpoms than I have in weeks, and my dose of clonazepam (which I take in the morning) did not help very much. I decided to visit urgent care, in case some other medical issue were compounding my withdrawal -- they haven't found anything, and I appear to be in good health, in general. I am joining this forum because I am very discouraged, scared, and confused. I don't understand why I'm still suffering non-stop, day after day, after two months at 0.25mg. Hopefully, you folks can help me to better understand what is happening, and help me decide what my next steps should be. Thank you.

Hello DeaconBlues, Welcome to BenzoBuddies!

You've done a great job of tapering and explaining your timeline and symptoms, I'm glad to know your trip to the ER didn't involve any other medical issues.  It's very common for members to run into issues the lower in dose they get, it sounds like you've hit your wall. 

You have three choices which I'm sure you're aware of.  You can go up in dose a tad to see if that will help stabilize you, you could hold this dose a little while longer in hopes of feeling better or you can begin to taper again. 

Your taper has been fairly rapid by our standards, we typically suggest cutting your dose by about 5-10% every couple of weeks but this should be driven by your symptoms and you stated yours were manageable during this time. 

There is much healing to be done even after a taper is completed with the last little bit of the drug is usually the most difficult.  We don't have all the answers but you'll find the support and resources you need to make the most informed decision about the best way forward.

I feel you'd benefit from talking to other members who have experience with tapering which I don't because I quit cold turkey so if you'd like, please start a thread on the  Withdrawal Support (during your taper) board, you'll find lots of experience there which can help you figure this out.

We're glad you found us, please keep asking questions.

Pamster

Welcome to BB DeaconBlues,

Goodness, tapering from a benzo really is a scary and confusing process ... I do understand as I'm there myself.  When I feel stuck, I do what Pamster lined out and I review all my options.  And I sit with them for a while.  Pamster is right, the end of the taper gets harder for most so going slower is usually necessary.  I fought that idea but I finally came to terms with it.

So, no taper advice from me.  The best thought I have it so take the pressure off about having to "arrive" somewhere, and in a certain length of time in terms of cutting/tapering and let things be a lit longer.  Your answers will come if you let them.

Best,

Kate 

Hi deacon

I’m tapering clonazepam.

I cut from .5 to .25 my first reduction.  That was August 2019.  Huge cut.  I felt fine.  For 2 months.  Then I got hit with withdrawal symptoms.  Maybe I had developed tolerance withdrawal to the .25.  Maybe I was having delayed onset withdrawals.  I’m unsure.  But there it was.  I also went to ER a few times, a walk in clinic twice.  After a month I realized I had to make a decision.  I didn’t want to increase my dose.  In fact, the various doctors gave me opposite opinions on that.  No matter if it was tolerance or delayed onset, I obviously had to get stable and then decrease more. 

You’ve decreased a lot in 4 months.  My thoughts are you need to wait.  Have you any days where symptoms are less?  Your brain is playing catch up to your reductions.  If you can handle the symptoms, don’t increase dose.  I understand it’s frustrating to hit a wall like this.  But let your brain catch up.  If it’s truly unbearable, speak to your doctor, and perhaps increase your dose.  Is it unbearable?  Updosing can help briefly, but there’s no guarantee it will help.  Then you have to reduce again anyway, but less. 

You are in charge of your taper.  You get to decide. 

You’ll get past this wall.  And this doesn’t mean you’ll struggle all the way.  Lower doses can be more challenging.  But that was by far my worst wall.  I’ve had one more since.

Ok, at .25 I added gabapentin.  I didn’t want to.  But I could not handle the panic and I refused to updose.  This was after almost 6 weeks of continuous panic.  The more recent time, I updosed to my most recent amount that I was stable.  That was after only 2 days of rolling panic attacks.  I stabilized, now 2 weeks later I’m tapering again by much smaller amounts.  It’s been fine.

I’m not advising either of these options.  Know that gabapentin also has to be tapered.  Updosing doesn’t always work. 

Take care

Thank you everyone for your thoughtful responses!

It's very helpful knowing that other people have experienced similar situations to mine, though I'm also sorry to hear that you've all suffered as a part of the withdrawal process. I hope things continue to improve for all of you!

At a GP's advice this Saturday, I updosed to 0.375mg klonopin for both Saturday and Sunday. This morning I took my 'normal' dose of 0.25mg, and based on your feedback I intend to hold at this dose indefinitely.

Healing64 -- I do have days where the symptoms are less. In fact, last Wednesday I was taking a very long hike and I said to my partner, "I've had a few days now where the symptoms have been pretty tolerable... if this continues for a few more days I might step down again." And of course, right on cue, I had an uptick in the severity of my symptoms that evening, which continued getting worse until Saturday morning (which prompted me to head to urgent care). I've been reading around on the forum, and it seems like this back-and-forth, one step forward and one step back dance is very familiar to folks in this community. It's reassuring to know this is normal.

Kate08 -- I appreciate your perspective about wanting/expecting to 'arrive' somewhere. This is something I've been struggling with, since I've now been at 0.25mg for over eight weeks and continue to feel pronounced symptoms. As I'm sure you know, it's frustrating and disheartening to suffer all day, every day and have no idea when things might improve -- and for how long that improvement will last! It seems like there's nothing to do but try and wait patiently while your body does the necessary healing.

Pamster -- Now that I've 'hit my wall', I'm having a very difficult time knowing how long I should remain at 0.25mg. How do I know when it is safe to step down again? How do I know that my brain and body have healed enough to allow me to step down? I don't want to go too fast, but I've largely been unable to work (and to be a good partner) during this process and I can't continue to shirk my responsibilities -- I'm sure this is something many people deal with, and I'm not sure how to taper off while still being a productive, loving person on a daily basis. That said, I do not want to risk the more dangerous side effects that people experience, so I am happy to go as slowly as is required. I just don't know what it means to feel 'good enough' to step down again...

(Also: I read the post in your signature, Pamster, about how the brain works, and I found this information very helpful!)

I'm interested in learning more about how folks taper at smaller doses -- my understanding at this point is that you get a special prescription from your doctor, who knows you're going to be tapering in this slower manner, and then you take it to a special pharmacy and they... make special pills or something? Apologies, it's not clear to me how this works -- is there a guide or some other informational post here on the forum toward which you could direct me?

Thanks again to all three of you for taking the time to help me -- I really appreciate it!

Yes, a compound pharmacy can prepare your prescription in a form that is much easier to taper in smaller doses.  This can be liquid or capsules.  Mine is a liquid suspension.  This saves me the confusion of trying to cut inaccurate doses, measure prepare etc.  Some people prepare their own at home.  I don’t trust my math on that.  Just be sure your doctor understands your goal.  Ask for a compound that clearly explains 10% reductions, and remember these reductions are 10% of your current dose at the time.  Not the start dose. 

As to when you know to reduce..this is both physical and mental.  When your symptoms have settled, and you feel mentally prepared ..  timelines are less important than symptoms.  10 days is usually good time to wait.  2 weeks is ok, if you’re unsure.  You may not be entirely free of symptoms.  Some people are, but many aren’t.  If it’s manageable and you feel like this is improving, then go for it.

When you make smaller reductions, you are much better off and can continue your taper more successfully.

So the compounding pharmacy will prepare the pills for you to take, in accordance with the tapering schedule? (Sorry, I'm not sure what you mean by liquid suspension. Either way, I would love to be able to simply take a pill in the morning, as I've been doing, for ease and peace of mind.)

Thank you, Healing64!

DeaconBlues,

I had a pretty rough week last week and the weekend wasn't much better.  I, too, was getting frustrated and worried and considering trying something new ... wasn't sure what but I was weighing my options like we talked about above.  Anyway, yesterday I woke up feeling better and I wound up having the best day I've had in a long time.  Goes to show how unpredictable this process can be ...

Best,

Kate 

Kate08,

Sorry to hear that last week and the weekend were rough, but I'm glad to hear that yesterday was better -- I'm starting to understand that this see-saw effect is very common for folks who are tapering. It's reassuring to know this is part of the process.

Thanks!

D.