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Klonopin taper- when do I jump?


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Hi everyone, I hope someone can help me. I started my Klonopin taper last Oct. Was taking 1 mg 15 years. My doc thought I should taper off and I really didn't think it would be a big deal, but of course it was.

 

He advised to cut the dose 50%  everyday for 2 weeks then go to every other day for 2 weeks, then just quit.

 

HA! Of course I failed miserably but started cutting a dose in half every couple days. It took 2 months to get to .5 mg a day but I did it.

 

Next step was cut that dose. Took another 2 months to get to  .25 a day which brought us to March.

 

In March I cut another 50% to get us to .125mg. a day which is where I'm at now. Unfortunately it has been extremely difficult and the symptoms are the worse then they have been the whole taper. I just am not able to stabilize. My worse symptom is tinnitus and insomnia. I feel like I'm losing my hearing it's so bad.

 

My doc says hang in there I'm doing well and to remember it will stop eventually.

 

Anyway my next appt is beginning of July and he expects me to have quit entirely by then.

 

So...I need to make another cut even though I am having symptoms. I'm so scared..this is a nightmare. Do you think my symptoms will get worse at .06 mg? I don't even know how to cut my pills so small and I can't concentrate well enough to figure out the math to do a liquid taper.

Thank you for listening.

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Most members say it gets more difficult to make reductions the lower in dose they get and it appears you're dealing with the same, I'm sorry to hear how miserable you are.  My suggestion would be to hold until your body can stabilize but your taper has been so rapid I don't know how long that will take or even if it will.  We suggest letting your symptoms guide your taper in order to stay functional and yours are saying a big no.

 

Are you aware that getting off of the drug is just the first step, recovery is the next and that can take a long time so using the drug to mitigate your symptom severity as you taper is the purpose of a taper because once you're drug free, you'll be on your own.

 

Would your doctor agree to letting you hold your dose or are you determined to keep going?  If you want to keep going we can help you figure out a way to get smaller reductions, here is some information about titration. Titration FAQ's

 

One last thing, if your doctor is unwilling to let you, the patient lead your own taper you might show him this.  Colorado Consortium Benzodiazepine Deprescribing Guidelines

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Thank you for responding. I'm not entirely sure what you meant by that second paragraph. My thinking skills aren't the best right  now. In fact, today was my worse day. I have no support and am so scared. I think even my vision is being effected now.

 

I do think my doctor will let me go at my own pace. I had to take a second dose today because I was twitching a lot and scared of having a seizure. I wish I could go back to .25  and go a lot slower. So are you saying you aren't sure I can stabilize at .125? I'm sorry I'm just not thinking clearly.

 

 

 

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Its unlikely you'll have a seizure while tapering, they're rare unless you have a history of them and vision problems are common so try not to go to worst case scenario's although this is what our brain does while we're going through this, fear is a huge withdrawal symptom. 

 

You're suffering and you've held this dose since March so I feel it makes sense to go back to .25 mgs but even doing that, it will take some time to stabilize.  I need to help you understand what we mean by stable, it doesn't mean feeling good, it means being able to carry out your daily tasks, in others words functional.  This is the gauge members use to determine when it's time to reduce again, their symptoms level off and they feel they can face another reduction.

 

I didn't taper but members say they make a reduction, typically with Klonopin their symptoms show up around day 3 but begin to level off around day 10 and depending on how they're feeling or what they have coming up in their life, they make another reduction.  This is a patient led, symptom based taper that makes the taper work for the person, not the person working for the taper or an arbitrary timeline determined by someone else.  This is your life and you need to be able to live it while withdrawing and recovering from this drug.

 

Please don't be scared, we're here to help and if it's your wish to go back to .25 mgs then you might want to consider it as long as your doctor will keep you supplied with enough medication to taper at your own pace.

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Thank you Pamster. I'm calling my doc today. I feel like I blew my taper because I backslid and took .25 mg this morning but at least I am now able to function. I hope my doc will understand because if he doesn't I don't know will happen to me.

 

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Tapers are all about experimentation with you as the subject unfortunately so you didn't blow anything, you went down one path and it didn't work so you'll make adjustments and try another path.  We're all so different, no two people or tapers are alike so when doctors try to make us follow a set guideline it doesn't always work for each individual.

 

Recording your reductions and your symptom severity will help you make informed decisions about when and how much to reduce so keep a journal.  I'm told by members that approaching your doctor without emotion about your situation is best, keeping calm but laying out your difficulties with a clear idea of how you'd like to proceed is best.  Its also not a good idea to mention online support groups, they tend to dismiss us but we've been in the trenches with members for almost 20 years so we understand this process better than some if not most doctors who's only information comes from their small practice.  The trouble is, not everyone will suffer like we do so we tend to be labeled or misdiagnosed.

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You are amazing in that you make me feel heard! I can't thank you enough. I have a call in to him so will let you know what he says. It's so strange its only the past week the symptoms became unmanageable.
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Benzodiazepine withdrawal is all about uncertainty and pain, we never know when we'll get hit with horrific symptoms, but we do know that stress is a huge contributor to increased symptom severity, have you had recent stress, new medications or supplements?  We can't always figure out why things get worse for us but these are some culprits. 

 

Please let us know what your doctor says, we'll be here.  :smitten:

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Welp, my doctors office never called me back even though they said they were sending an "urgent" message. I do feel a lot better (except the tinnitus) so maybe I just did too fast. I'm going back to .125 tomorrow see what happens. The .25 was surprisingly sedating today.

 

 

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Hopefully you'll get a response from your doctor today but I think the fact that the .25 was sedating is a good sign.  A one off increase in dose won't typically affect a taper so going back to .125 sounds like a good idea.
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I heard from his nurse today. He's not in until next week. She was very empathetic and assured me he would be ok with slowing down the taper. She emphasized that I should taper what is right for me. Sooo...I feel pretty good today at .125 dose but understand it won't last for long. I'm wondering how to continue my taper. .125 is not sustainable at this time, and .25 is too much. Or maybe I should think of dosing in terms of weekly amounts since the half life is so long. I was taking .875 mg a week can't stabilize on that. Not sure how much to increase or if I should. I do not want to go through that again. My hearing is still pretty bad from the tinnitus.

 

 

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[cd...]

Hi Collie,

 

It's great to read that you contacted your doctor/nurse and they are supportive of your slower taper.  That's great news for you!

 

My taper below .125 was a completely different animal for me.  Much harder and I had to go a lot slower to function well enough.  Many members report the same experience and so it's good that you are reaching out for input. 

 

For me, I tried to hold at the lowest amount I could tolerate reasonably well.  For you, it sounds like that is .125.  There were times that I held for many weeks or even months and then started to taper again.  It worked really well for me.  Deciding when/how to taper is a very personal decision based on your tolerance to symptoms and other factors.

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Hi Rodgerthat, thank you for responding. I see it took you 8 months from a .25 to the end. How was that for you? How did you make the doses so small? Congrats on completing your taper! How are you doing?
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Thank you Pamster for the links. It looks so overwhelming since I'm not thinking correctly through all this

I don't I can figure all that out and hold tweezers to put powder in a capsule! I wish I could find someone to help me do this. Maybe a pharmacy?

 

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CollieB, I know it's overwhelming but you don't need to make your own pills, that's just one method, many will weigh their doses but don't bother with putting them into capsules.  Most will dry cut their pills and just eyeball the little piles, it's all about your comfort level, some need to be more precise, others accept that it all evens out.

 

You can ask your doctor for a script to take to a compounding pharmacy, it can get a little pricey but the peace of mind can be worth it.  Lets talk about this, okay?

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I'm glad you are talking to me about this. I had a very bad night. I started getting muscle jerks and couldn't sleep. Weird vision came back along with very dark thoughts. I ended up taking .25 this morning again which helped but it seems I am going backwards.  Why is this happening? It feels like my body is very sensitive to everything now. I think I have to stop drinking coffee. Yesterday I had some ice tea and that seemed to set me off.

 

So my current dose is .125 and .25 alternating days. Is this doable? I just want to be on a stable dose and start the slow taper.

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Most of our members have to give up caffeine for a time, I did, it amped me up too much.  Your are very sensitive right now, your central nervous system is under assault so things that never bothered you before will now.  Try not to change your routine, avoid adding any supplements but if you do, only add one at a time and start low.  Same with adding medications, we can't predict how we're going to react.

 

Once we go into withdrawal symptoms its very difficult to stabilize so it's important you find a steady dose that works for you.  Taking more of the drug every other day isn't a good idea, stable blood serum levels are the way to go, taking more one day and less the next could lead to a whiplash effect of symptoms. 

 

Please allow your body time to adjust to whatever dose you decide on, you may need to go up in dose but aim for the lowest possible one that leaves you stable.  This doesn't mean feeling good, it means able to carry out your daily tasks, this is our definition. 

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I'm happy to report I took 1/2 hydroxyzine and some of my anxiety has lightened up. Maybe this is doable!
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[cd...]

Hi Rodgerthat, thank you for responding. I see it took you 8 months from a .25 to the end. How was that for you? How did you make the doses so small? Congrats on completing your taper! How are you doing?

 

Collie this is very doable! It just takes a minute to wrap your head around how to do it and you will get better at it.  It is crazy that there is no real doctor support and we are on our own to cut and taper.  I've read some people use a compounding pharmacy but I'm not sure how that works. 

 

I was able to dry cut using just a scale until I got to a very low amount and my scale became inaccurate.  I used a file and my scale to dry cut every day.  It is a hassle but it worked well for me.  Once my amount got too low I used the capsule method by Bob7.  In retrospect, I would have used the capsules earlier in my taper because I liked having my pills batched so I didn't have to take the time to dry cut every day.

 

I finished my taper and so will you! The key is to listen to your body and to be patient with yourself as you go through.  It is not easy but is very doable!!

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Thank Rodgerthat, you give me so much hope. I guess I should just do the math and start my taper somewhere between. 25 and .125. Once I am stable on that dose I will make the pills. The hydroxyzine really is helping me today...it's still rough but at least I can function now.
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[cd...]
Collie, the goal with tapering is to be able to function.  For me, functioning meant that I had symptoms but that I could still do what I needed to do including work. 
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