Please tell me this clonazepam nightmare will end
October 13, 2021 6:15 PM   Subscribe

I have been on clonazepam for many years, prescribed by a doctor and knowing it was a good fit for what I need. I was sick of the weird side effects so, with my doctor's support, I started tapering off slowly in July. I'm still not done tapering, and I am miserable.

I've known clonazepam is addictive since I started taking it, but given my anxiety and my doctor's recommendation, I never really regretted taking it. Earlier this year I realized that this was the specific prescription giving me unpleasant withdrawal symptoms a little (or a lot) before it was time to take it every evening. So with my doctor's support I started tapering off. I started at 1 mg pre-taper. My doctor recommended dropping .25 mg each month. I'm taking it slow because I know how awful (and dangerous) it would be to go faster.

I am miserable. I've always had trouble falling asleep quickly, but now I have insomnia for days at a time. I get bad headaches. I often feel super out of it, probably because of the lack of sleep, but also because I'm getting intense anxiety attacks for seemingly no reason. The anxiety comes from nowhere, based on nothing, and makes my chest feel so tight that I worried I had covid. (I did not.) I'm worried about my heart health.

I am currently trying to go from .5 mg to .25 mg daily but the past few days have been so bad that I decided to go back to .5mg for now. I feel like a failure, but I don't know what else to do.

Oh god. Please tell me this isn't going to be forever. I know benzos are terrible to withdraw from. I know tapering slowly is the way to go, but I never expected this to take so long or be so awful along the way. My doctor prescribed a non-addictive anxiety med - buspar - to help, but it has not done anything (would I even be able to tell??). I don't want to play around with any other prescriptions at this point.

This can't be forever, right? I know, I know...exercise will help, diet will help, avoiding blue light and listening to meditation podcasts will help. My motivation is poor because I feel so shitty.

Have you been in this position? How did you successfully get down to zero mg after so many years of taking this drug? Is this...normal??? Any advice for managing the misery and getting into the mindset that this will actually ever work? What got you through this?

posted by violetish to Health & Fitness (20 answers total) 8 users marked this as a favorite
Can you go down by increments smaller than .25mg, and taper every week or two?

A friend suggested the Ashton manual which substitutes Valium for part of the dose.
posted by lloquat at 6:30 PM on October 13 [3 favorites]

I know you said you don't want to mess around with any other prescriptions, but maybe consider clonidine. It was originally invented as a blood pressure medication, so it's not psychoactive. It basically just calms your autonomic nervous system down. It was originally prescribed to me to help with getting off alcohol/benzos. I've taken it for years to help me sleep.

It's not going to knock you out, but it just makes it so that all the good sleep hygiene stuff actually works. I've taken the same dose for years without any tolerance or anything.

Because it does serve to lower your blood pressure, there can be some rebound hypertension if you go off of it, but I haven't tested that out personally.

Also, maybe try melatonin? I haven't personally tried, but I know a lot of people find it helpful.

Most recently, I've found taking Magnesium Glycinate before bed helps relax me and make it easier to go to sleep. I take a low dose (100 mg). Also helps with muscle tension. I'm not usually into the whole supplements/alternative medicine thing but I've been pleasantly surprised.
posted by litera scripta manet at 6:34 PM on October 13 [5 favorites]

But if you really don't want to go down the meds route, one thing to look into is maybe see if you can work with a compounding pharmacy to help you decrease in much smaller increments. Like, as small as possible.
posted by litera scripta manet at 6:35 PM on October 13 [4 favorites]

IANYD, and this is not medical advice, but the tail end of a clonazepam taper will be harder than the beginning part. What you are experiencing is normal and very challenging. -0.25 mg per month is doable but ambitious; I've had people take over nine months to go down from that dose. I do not want to talk about medication substitutes here but I have had patients successfully taper by alternating dosages (0.5 mg one day, 0.25 mg the other, repeat until you feel ready to make the next decrement in dosage - write it out on a calendar so you have a visual representation of your plan) since the half life of clonazepam is on the longer side. I would recommend the Ashton manual as well. Would also recommend concurrent CBT or some sort of supportive psychotherapy.
posted by gemutlichkeit at 7:42 PM on October 13 [13 favorites]

If you don't feel like you're getting the support you need from your doctor, there are specialists who help with benzo withdrawal and coping skills. I have a family member who is addicted to benzos and pretty sure we're going to have to send them to a specialist. The person that was recommended to us was Jennifer Leigh PsyD, she is based in the SF Bay Area but looks like there are virtual options. She also has a blog that might have some good information.
posted by radioamy at 9:07 PM on October 13 [1 favorite]

Response by poster: Thank you all so much! Super helpful info. I'm a little overwhelmed by the Ashton manual and will need to review it more. It looks like it'll help a lot.

It also sounds like adding a prescription is helpful if it's the right one. I was only thinking about another anxiety med and hadn't realized there was stuff out there that could help in a specific way like what you describe. I'm going to reach out to my doctor about it. And you're right, when I spell it out like this, I don't feel like my doctor is doing as much as I need. I'll reach out to him again but will also look into who else is available to help with this specific issue.

I also never thought about getting smaller pills so I can taper more slowly. Given how hard this jump has been, that sounds like a really great option.
posted by violetish at 9:10 PM on October 13 [1 favorite]

I’ve been having terrible migraine headaches and medication overuse and after a lot of suffering I started working with a medicinal cannabis doctor. Basically it got to the point that I was using up all my triptans and painkillers etc. (I could only use them 10 days a month) and suffering the other 20 days.

Anyway, I never liked cannabis in my youth but the doctor explained that in the right balance of thc and cbd you don’t have really any psychoactive effects!!!!! And it’s been really good for me to have as a back up. Anyway- in my research I’ve read studies that it’s been very helpful for people going through acute opioid withdrawal so if you live somewhere where you can get advice easily that may be one option.
posted by pairofshades at 9:17 PM on October 13 [3 favorites]

Just wanted to say I had a similar experience with a different drug (amitriptyline). I felt horrible the entire taper, and then for a month or so after my last dose as well. I too thought it would be like that forever, but it was not. I’ve been off it for many years now. What got me through at the time was thinking about every time I had missed my med and gotten horrible withdrawal symptoms—at least this time it was under my control and not because I forgot to refill or there was a med shortage. I did a lot of playing mindless phone games and eating takeout. Reached out to family and friends for support.

It is so rough but it’s not forever. Definitely check out the above suggestions for making it easier, but know that it will get better eventually even if it doesn’t feel like it right now. From the obsessive research I did at the time, this is pretty normal and it sucks but there is a light at the end of the tunnel.
posted by brook horse at 9:59 PM on October 13 [4 favorites]

I tapered off a similar dose of clonazepam a few years ago after daily use for 3 years. I tapered down over about 6 months, maybe a bit longer. I don’t remember the exact details, but I was cutting my pills into eights, not quarters, and alternating doses as gemutlichkeit suggested above.
The last few steps down were surprisingly hard, so I slowed down even more and timed my final taper over a work vacation.

For about a year afterwards, every time I had a headache, a bit of nausea, or chills I immediately assumed I’d missed a dose, even once I was well out of the taper phase. It’s a reflex that’s hard to break, but eventually you’ll recalibrate.

Good luck, you can do it.
posted by third word on a random page at 4:33 AM on October 14

I am currently tapering off of a prescription benzo (not clonazepam) as well, and the only thing that has made it survivable for me is the fact that my current physician also prescribed me gabapentin. (Obligatory note that YMMV/IANAD and this is just me sharing my experience; obviously talk to your doctor about whether or not this would be an option for you.)

The withdrawal symptoms I get from benzo tapering tend to be: intense aching and stiffness/swelling in my joints, insomnia, increased anxiety (further contributing to aforementioned insomnia), and headaches. The gabapentin reduces all of these symptoms by 90%. Of course, it has its side effects too: drowsiness (this hasn't been too much of a problem for me, and it helps with the insomnia so I can sleep in peace) and, in my case, acne/skin oiliness and increased appetite. Not everyone has these side effects but this has been my experience.

I have been tapering off at a rate of 0.5mg (again, different benzo than yours) and with the gabapentin it takes about a month for me to reach a place where I don't feel I need the gabapentin anymore. Then I try to stay at that dosage for a month before tapering down again- just to give me some stability so that I don't feel like I am always withdrawing. It sucks that it takes this long to withdraw so the only way I can deal with it, personally, is to accept the long withdrawal process and break it up into manageable chunks of time with intervals of stability.

I also agree with others that the Ashton manual is another excellent route to go and is worth bringing up with your doctor.

Don't beat up on yourself for switching back to the higher dose; stuff like this is really hard, and isn't always a linear path.
posted by nightrecordings at 7:39 AM on October 14

I am familiar with this process. If you would like any information beyond what the other folks have said, or would like to talk, PM me.
posted by jpziller at 8:02 AM on October 14

I have had to do this too. Clonazepam is commonly used for the chronic illness I have, and I was on a trial of it and up to 2 mg when it "turned" on me and I realized what was happening pointed to a history of paradoxical reactions to benzodiazepines - anxiety and agitation. I tapered the first 1 mg in a month and then crashed. With the guidance of the immensely helpful Benzo Buddies forum, I did a much slower water titration of the second milligram over six months. Because I continued to have intense paradoxical reactions that entire time, it was one of the hardest things I've ever had to do, and I'm saying that as someone who has been bedridden since 2008. Please go by Benzo Buddies - there is so much knowledge there and so much reassurance that you're not alone and can do this.
posted by jocelmeow at 9:08 AM on October 14 [1 favorite]

I don’t know anything about clonazepam, but I can tell you my husband just tried to start taking Buspar and he had such bad nausea, headaches, and insomnia that he had to quit. Could be causing some of your issues.
posted by something something at 10:07 AM on October 14

Buspar is one of those drug where it either works for you or it doesn't. There doesn't seem to be much inbetween. It didn't work for me. I took propranolol for anxiety for a while. It too is a blood pressure med that's useful for anxiety.

For sleep, I take Trazodone. It's an old AD that isn't really good as an AD. But it is good as an insomnia treatment.
posted by kathrynm at 10:19 AM on October 14

If you look in my question history you will see that I've asked some questions about tapering off of a psychiatric medication. Feel free to PM me, I have been pretty successful so far, and I think my taper is going to take much, much longer than yours, if that makes you feel any better :)
posted by vocativecase at 10:43 AM on October 14

And adding: please do NOT feel like a failure. The idea that it is your fault that your body is dependent on a pharmaceutical drug that is known to be extremely, absurdly dependence-causing is ludicrous.

Maybe you can feel like a failure (I'm just kidding!) when you're going down by micrograms every month, but until then, don't beat yourself up for decreasing your dosage by a full 25% and having adverse reactions.
posted by vocativecase at 10:48 AM on October 14

This sounds SO miserable -- I'm sorry.

About 5 years ago, I took Ativan (another benzo) every day for a debilitating anxiety flare-up, then tapered off. I took 0.5 mg daily for about 3 months, then took roughly 6 months to taper down to 0. My psychiatrist thought I was NUTS -- that's a much, much slower taper than you probably need for 0.5 mg of Ativan, but I had minimal side effects, which was nice. I had heard so many horror stories about benzo tapering, so I took the most conservative approach possible.

I found the Equadose Pill Splitter helpful, as you can cut pills into very small pieces. Instead of going from 0.5 mg (one pill) down to 0.25 (half a pill) to 0 as my psychiatrist recommended, I went from 0.5 to 0.375 to 0.25 to 0.125. Then for a while, I took 0.125 every other night, then every third night, etc.

I don't know much about the dosing for clonazepam, but can you find ways to take VERY small steps down? Also, if you're a person who menstruates, try to time your step-down for the "best" part of the month where you're least likely to be influenced by hormonal stuff. I always reduced my dose once a month, around day 8 or 10 of my period.

Good luck!
posted by leftover_scrabble_rack at 10:49 AM on October 14 [2 favorites]

For years -- by which I mean decades -- clonazepam was all I had in the face of a pretty hefty nightmare manic depression. I tried about everything else that was available at the time, finally gave up late 90s, figured "OK, this is good as life gets, fuck it." and clonazepam was all I had. Then, come autumn 2002, the biggest monster manic-panic run yet, and sleep but a black dream -- I guess I'd go out a bit after taking however much clonazepam I had; as much an alcoholic / drug addict I am, I am still amazed I never got addicty about benzos, and I never drank. It's just that I know what a horrific black hole that bit it, somehow -- grace, is my take -- somehow I never got lefthanded behind it.

November 2002 beat the living shit out of me. Forced my hand, forced me into the local psych ward ER here in Austin. And onto the long road toward medicinal armistice with fkn manic depression.

Every shrink I've ever talked to told me that I was wiping my brain out, like taking a wet sponge to a white board, that benzo's would give me some kind of present but absolutely at the cost of my future. That increased after adding zolpidem (ambien) into the mix, and two years ago I found myself reaching around in my brain for what had been written on that white board. I got scared -- I am scared -- I got scared and knew I had to begin to face this son of a bitch down.

I started by dumping out of the zolpidem. How hard could that be, right? Jesus h christ. I had no idea that I had not been dreaming, but I found out as I began to dump out of that goddamned zolpidem. Vivid dreams, is what I called it at first, though by now I mostly sortof think that it's just dreams, is all. I don't know how long it took to get zolpidem behind me, I set no timeline, just was gonna go for it, and I did. But now, how the hell am I supposed to sleep?

White noise, a fan running most all the day, absolutely all of the night. And I found a ten hour long vid of heavy rain in a forest and swiped it from youtube, turn it on fairly loud on my laptop next to this couch I'm sleeping on at present. (For whatever reason, twice I fell out of bed when kicking zolpidem. It really is a fucker. Anyways, I sleep on this bitty love seat, and I'm lots taller than you are and I drape, legs festooned over there, arms up here sortof, I'm spun all about on this uncomfortable little bastard but I haven't fallen off. Yet.)

And now, for my next trick -- clonazepam. I decided I was just going to go from 2mg to 1mg, pretty bright huh? What a dope. It's a work in progress. Not sure how it's going to turn out, how long. But I am a determined SOB and I'll find the way.

Last. What works for others may or may not work for you. I *love* me some buspar, I'm maxed out at 60mg per day, I rub the shit all over my head festively. No bad side effects, it's like eating Pez candies except it knocks a bit of anxiety off, eases me toward sleep. But I've a good friend who tried it and it was fingernails on chalkboard, only worse.

I truly hope you find your way.
posted by dancestoblue at 8:10 PM on October 14 [1 favorite]

I would like to read your memoir, dancestoblue.
posted by areaperson at 7:03 AM on October 15

Wow, I'm sorry that you've had such a rough time with it. I'm not crazy about taking it, but since I started stimulants for ADHD, I've found that I've been relying on it to get to sleep at night, also at about 1mg.

One thing to note is that you can get at least as small as a .5mg tablet and those you should be able to snap into quarters, so you can modulate with .125mg increments.
posted by rubah at 2:31 PM on October 15

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