Klonopin - How Low Do You Go?

[[Je...]]

A little bit lower ... I did cut my dose to 0.09375 mg on August 28th, and then I cut again to 0.0625 mg on September 4th, and I've been holding at that dose for nearly three weeks. I haven't been feeling great, but with so many moving parts with the chemo, I don't know exactly what is making me feel like crap. I decided to hold a little bit longer right now because I am so close to the end of my taper and I want to see, if it is even possible, which effects ARE from the new chemo and which ones might be withdrawal. The worst seems to be sporadic insomnia. But I'm also experiencing some tinnitus, nausea, headaches, neuropathy, and a bunch of other niggling issues. Some DP/DR and irritability - likely due to a lack of sleep. I keep slogging along and it could be a LOT worse.

My plan is to cut again either this coming Monday or a week from Monday ... I'm going to let how I feel guide me ... I'm planning to cut to 0.03125 mg, which will be 1/4th of a 0.125 mg ODT of clonazepam. Has anyone jumped from this dose? I'm thinking this may be it ...

[[Pa...]]

The symptoms you list sure sound like benzo’s but its difficult to know so I’m glad you’re taking it slow because that seems to be the only moving part you can control right now.  I’ve seen members jump at .05 so I think your thoughts are in line with what others have done. 

The insomnia is rough but it seems to be what the majority of members have to deal with, I imagine your cancer diagnosis is playing a part in your sleepless nights, you have a lot on your mind. 

I’m glad you checked in, you’re sure getting close!

[[Je...]]

6 hours ago, [[P...] said:

The symptoms you list sure sound like benzo’s but its difficult to know so I’m glad you’re taking it slow because that seems to be the only moving part you can control right now.  I’ve seen members jump at .05 so I think your thoughts are in line with what others have done. 

The insomnia is rough but it seems to be what the majority of members have to deal with, I imagine your cancer diagnosis is playing a part in your sleepless nights, you have a lot on your mind. 

I’m glad you checked in, you’re sure getting close!

Thank you @[Pa...]! Yes, the insomnia definitely seems to be a very common withdrawal symptom, and I'm sure that is a big part of it! When I can't sleep my mind just spins like a hamster on a wheel! Crazy! I sure get a lot done, though! (I plan ahead and have little "projects" to work on.) 

OK, I'm thinking I will probably jump from the 0.03125 mg but I'll probably hold there for a while ... I'll just see how I feel ... I'm looking forward to the jump and then being able - eventually - to write my success story! I can SEE the Light at the End of the Tunnel!!

[[Es...]]

@[Je...]

I really admire you. Fighting BZD WD on top of chemotherapy. And you have all this BZD WD figured out down to a smallest number. I never was so exact. I don’t have a mathematical brain. 

Your optimism is contagious. I’m at my lowest at present. And seeing people fighting two devils at a time gives me hope and courage. All I can say, jump from the lowest possible dose. In the end, the BZD dependence has a huge psychological component. 

As to insomnia - it’s litterally killing me despite the diazepam (tolerance). I also don’t eat enough, so I cannot sleep. Idk if I recommended you this book by Gregg D. Jacobs, Ph. D. “Say Good Night to Insomnia“. I had an Audible version and it was so cool.

But I splurged recently on a Kindle version, which I read before sleep, while trying to force food down. Oh my, this book is a GEM. Even thinking about it makes me sleepy💤

It’s based on CBT. A lifesaver. Yes, we claim the power back from these pills. They only cure the effects of insomnia, not the causes.

I’ll be trying to place some quotes from there on my word thread, I’m reluctant to start another thread here, not sure how long I’ll last. If someone wants to find them - they’ll find them.

Wishing you all the best, thanks for the Hope❤️

Paula

[[Je...]]

On 20/09/2023 at 14:33, [[E...] said:

@[Je...]

I really admire you. Fighting BZD WD on top of chemotherapy. And you have all this BZD WD figured out down to a smallest number. I never was so exact. I don’t have a mathematical brain. 

Your optimism is contagious. I’m at my lowest at present. And seeing people fighting two devils at a time gives me hope and courage. All I can say, jump from the lowest possible dose. In the end, the BZD dependence has a huge psychological component. 

As to insomnia - it’s litterally killing me despite the diazepam (tolerance). I also don’t eat enough, so I cannot sleep. Idk if I recommended you this book by Gregg D. Jacobs, Ph. D. “Say Good Night to Insomnia“. I had an Audible version and it was so cool.

But I splurged recently on a Kindle version, which I read before sleep, while trying to force food down. Oh my, this book is a GEM. Even thinking about it makes me sleepy💤

It’s based on CBT. A lifesaver. Yes, we claim the power back from these pills. They only cure the effects of insomnia, not the causes.

I’ll be trying to place some quotes from there on my word thread, I’m reluctant to start another thread here, not sure how long I’ll last. If someone wants to find them - they’ll find them.

Wishing you all the best, thanks for the Hope❤️

Paula

@[Es...] Thank you so much for the book recommendation! I will see if I can find that! One of my problems is that I get a corticosteroid as part of my treatment, and it is SO hard to overcome the insomnia caused by that. Unfortunately, it's an integral part of treatment and kills the cancer cells outright as well as preventing an inflammatory response to the chemo, so I'm kind of stuck with it. BUT I plan ahead and on "Dex Days" I get an awful lot accomplished! That being said, I only get the steroid once a week, so as it leaves my system, I am more likely to be able to sleep, but then, the WD from the Klonopin seems to kick in and THEN I need more help! Argh!

I am SO sorry you are suffering with the insomnia! I mean I know; it just sucks! Meditating helps me a lot. It doesn't replace sleep, but it really does help and I meditate every morning. It's a life saver. Also helps a lot with anxiety. 

Oh, and not being able to eat! That's not good either. I go back and forth. Some days I literally forget to eat and other days I eat everything that isn't nailed down. It's crazy, this roller coaster I am on. But I still have more good days than bad ones, and there is ALWAYS hope! So, I just keep slogging along!

Can you drink things rather than eat? This is a problem with chemo, too, and there is a lot of good information about increasing appetite and gentle things to eat and such. Sometimes we DO have to force down the food. I have medication for nausea, but I don't take it, rather I use those "sea bands" and they seem to help. (Or maybe I just THINK they help, which works, too!)

I'm having some cogfog today, so I'm sorry if I'm not making much sense. I slept OK last night, but not really the two nights before, and right now I'm just feeling loopy. Time to go find a tea or something. I will check out your word thread!! 

Sending you PosiVibes to feel better!!

Jess

[[an...]]

Hi, I'm new to this forum. I have found great inspiration from you Jessamy, you already are a success story! I am also tapering off klonopin with reductions of 0.125 every 3 months. From 1.5 to 1 between 2009 and 2019. From 1 to 0.625 between 2022 and now. I am planning however to reduce the amount of my taper once I hit 0.5. Eventually I'll face a similar dilemma in regards to making a jump. 
 

[[Co...]]

Welcome to BenzoBuddies, @[an...]

If you start your own thread on one of the core support forums, we will help and support you so that you can one day write your own Success Story.

[[Ch...]]

20 hours ago, [[a...] said:

Hi, I'm new to this forum. I have found great inspiration from you Jessamy, you already are a success story! I am also tapering off klonopin with reductions of 0.125 every 3 months. From 1.5 to 1 between 2009 and 2019. From 1 to 0.625 between 2022 and now. I am planning however to reduce the amount of my taper once I hit 0.5. Eventually I'll face a similar dilemma in regards to making a jump. 
 

 

20 hours ago, [[a...] said:

Hi, I'm new to this forum. I have found great inspiration from you Jessamy, you already are a success story! I am also tapering off klonopin with reductions of 0.125 every 3 months. From 1.5 to 1 between 2009 and 2019. From 1 to 0.625 between 2022 and now. I am planning however to 
 

Took 10’years to decreae 0.5 mg @[an...]

[[me...]]

On 05/10/2023 at 00:21, [[C...] said:

Took 10’years to decreae 0.5 mg @[an...]

Hi angel of death may I ask what dosage you was on  

Thanks

[[Je...]]

On 03/10/2023 at 20:06, [[a...] said:

Hi, I'm new to this forum. I have found great inspiration from you Jessamy, you already are a success story! I am also tapering off klonopin with reductions of 0.125 every 3 months. From 1.5 to 1 between 2009 and 2019. From 1 to 0.625 between 2022 and now. I am planning however to reduce the amount of my taper once I hit 0.5. Eventually I'll face a similar dilemma in regards to making a jump. 
 

@[an...] Welcome! I am so sorry I did not see this sooner! I have been sort of hibernating! Thank you very much for your kind words!! I am still tapering but I think I am very nearly done! After holding at 0.0625 mg per day for four weeks, I made a cut to 0.03125 mg on October 02, so 10 days ago. I think it's going OK, although, some days it's hard to say. I'm in chemo and some of the side effects are the same as benzo wd, and I'm never quite sure what is causing what. Yesterday, I must say, was NOT one of my better days. I had to go scream into a pillow because I was so cranky and got frustrated over something stupid. Today, though, I'm feeling "not bad". And, actually, for the past ten days I've honestly felt MOSTLY pretty good! I get very tired, but I do think that is the chemo. (Blood counts get low and such.)

I am planning to hold at this dose (0.03125 mg, which I take once a day in the evening before bed) for the rest of this week and all of next week, and then I will stop completely on October 23. (I will be starting a new cycle of chemo AND getting my quarterly infusion of an osteoclast inhibitor, and am pretty much going to feel lousy anyway, so I'm just gonna go for it.)

I had looked back at my previous taper, and this is where I had jumped before. I'm hoping the landing won't be too bumpy, but I'll post about it and hopefully be able to write a success story at some point.

I am going faster than is usually recommended, but I wanted to keep posting so that new people can see that it IS possible to go faster. (Again, though, not necessarily recommended. You have to listen to what your body and your intuition tells you and follow that.)

Here is something I have noticed: I take my dose of clonazepam at bedtime, and AFTER I take it, I notice I start to feel a little bit anxious. Often when I first wake up, I feel anxious and jittery, like my body is sort of "vibrating". Then, as the day goes on, I feel better and better. Right up until bedtime. It seems like if I was missing the benzo, that I would feel WORSE throughout the day, not better ...?

Of course, I am taking an oral chemo drug in the evening, too, and THAT could certainly make me feel crummy. And then I get the infusions, which include a steroid, which is NOT a fun thing to take. So, really, I don't know what causes what, but I'm not sure I'm feeling the benzo anymore through the confusion of everything else.

Oh, wow, I AM rambling, aren't I!?

I am hoping that your taper goes well!! I will check back more frequently! 

Jess

[[an...]]

@[Je...]Those are some massive jumps. Its impressive you are doing this chemo at the same time. 

@[Ch...] Most of those 10 years I kept the same dosage and the reductions that occurred were few and far between. My doctor died in December of 2022, he was the one who prescribed me these meds. This forced me to look for a new doc who is assisting me with the taper which she insisted on to accept helping me, but I wanted to do it anyways so I embraced it. 

@[me...] I mentioned my dosage already I'm not sure what info you're looking for?

[[Je...]]

2 hours ago, [[a...] said:

@[Je...]Those are some massive jumps. Its impressive you are doing this chemo at the same time. 

@[Ch...] Most of those 10 years I kept the same dosage and the reductions that occurred were few and far between. My doctor died in December of 2022, he was the one who prescribed me these meds. This forced me to look for a new doc who is assisting me with the taper which she insisted on to accept helping me, but I wanted to do it anyways so I embraced it. 

@[me...] I mentioned my dosage already I'm not sure what info you're looking for?

@[an...] They are larger cuts than are recommended, for sure, but I'm doing OK and I kind of think the side effects from chemo mask a lot of the withdrawal symptoms. I'm actually rather HOPING that some of the more unpleasant effects ARE withdrawal because that means they will go away!! I'm sooooo close!! 

[[...]]

Hello.. could you please give me advice? Been on Klonopin for 40 years. 1 mg. Now only barely works a few hours. Having extreme anxiety/panic attacks with brain issues/pain, numbness, extreme anxiety at night. What do you suggest I do? I have had 3 TIA’s in the past and my neurologist doesn’t think my brain can withstand going off with all the damage already done to my brain. Any advice is most appreciated. L

[[Pa...]]

Hello @[...], welcome to BenzoBuddies,

I’m so very sorry to hear what you’re going through, it sounds like the medication is no longer working for you, and when that happens, things get bad.

What is your dose and how often do you take the Klonopin?  I hate to go against your doctor because this is a very difficult process and it can take many months and possibly years to recover from our use.  

We’d love to help you but it would be better if you started a thread of your own so we can discuss your options.  If you’ll create another post using this link we can hopefully work something out. https://benzobuddies.org/forum/120-benzodiazepine-taper-strategies/

Pamster

[[...]]

Thank you so much. I started a new thread as you suggested. 

[[Je...]]

[[...]]

Yes it absolutely is!

[[me...]]

On 12/10/2023 at 00:02, [[J...] said:

@[an...] Welcome! I am so sorry I did not see this sooner! I have been sort of hibernating! Thank you very much for your kind words!! I am still tapering but I think I am very nearly done! After holding at 0.0625 mg per day for four weeks, I made a cut to 0.03125 mg on October 02, so 10 days ago. I think it's going OK, although, some days it's hard to say. I'm in chemo and some of the side effects are the same as benzo wd, and I'm never quite sure what is causing what. Yesterday, I must say, was NOT one of my better days. I had to go scream into a pillow because I was so cranky and got frustrated over something stupid. Today, though, I'm feeling "not bad". And, actually, for the past ten days I've honestly felt MOSTLY pretty good! I get very tired, but I do think that is the chemo. (Blood counts get low and such.)

I am planning to hold at this dose (0.03125 mg, which I take once a day in the evening before bed) for the rest of this week and all of next week, and then I will stop completely on October 23. (I will be starting a new cycle of chemo AND getting my quarterly infusion of an osteoclast inhibitor, and am pretty much going to feel lousy anyway, so I'm just gonna go for it.)

I had looked back at my previous taper, and this is where I had jumped before. I'm hoping the landing won't be too bumpy, but I'll post about it and hopefully be able to write a success story at some point.

I am going faster than is usually recommended, but I wanted to keep posting so that new people can see that it IS possible to go faster. (Again, though, not necessarily recommended. You have to listen to what your body and your intuition tells you and follow that.)

Here is something I have noticed: I take my dose of clonazepam at bedtime, and AFTER I take it, I notice I start to feel a little bit anxious. Often when I first wake up, I feel anxious and jittery, like my body is sort of "vibrating". Then, as the day goes on, I feel better and better. Right up until bedtime. It seems like if I was missing the benzo, that I would feel WORSE throughout the day, not better ...?

Of course, I am taking an oral chemo drug in the evening, too, and THAT could certainly make me feel crummy. And then I get the infusions, which include a steroid, which is NOT a fun thing to take. So, really, I don't know what causes what, but I'm not sure I'm feeling the benzo anymore through the confusion of everything else.

Oh, wow, I AM rambling, aren't I!?

I am hoping that your taper goes well!! I will check back more frequently! 

Jess

Hi jessamay how fast did you taper and how long were you on clonazapam andhow much if you don't mind me asking thanks wish you well in your chemo🙏

[[Je...]]

On 16/10/2023 at 05:16, [[m...] said:

Hi jessamay how fast did you taper and how long were you on clonazapam andhow much if you don't mind me asking thanks wish you well in your chemo🙏

@[me...] I'm sorry for taking so long to get back to you! I was away from home with no computer! My taper has been sporadic. I started off really slow and then sped up. All told it's been close to three years, I think. (If you go to my profile, I have everything listed in my history - which might make more sense than my babble!) I was initially on clonazepam for something like 12 years, and then in 2015 I stopped and then went back on in 2019. So, I've been on it this time for nearly 5 years. (Although I will be done with my taper before I reach five years!)  My starting dose was 2.5 mg per day, and I'd take 1 mg in the morning and 1.5 mg at night.

I don't mind you asking at all! And thank you for your kind well wishes!!

Jess

[[me...]]

Thankyou jessamay. 

No need to apologise hope you are well 

🙏❣️

[[Je...]]

UPDATE on Taper. So, Sunday, October 22nd, was my last dose of clonazepam - went from 0.03125 mg to zero, so, that is my answer to HOW LOW DO YOU GO?. Yesterday I jumped, so no dose last night. Now, we just wait and see how my withdrawal goes. Hard to tell, really, because I also had chemotherapy yesterday, and *that* makes me feel rather awful, which is why I chose to jump. I'm figuring the side effects from chemo will likely somewhat mask the withdrawal symptoms. 

Symptoms include insomnia (but I get an infusion of 20 mg of Dexamethasone - a corticosteroid - with my treatment and THAT causes many of my symptoms ...), massive headache, pain in my legs, back, and ribs, running nose, tinnitus, fatigue (red blood cell counts are dropping), and irritability. Then again, as I said, I'm getting a lot of med. Ugh. BUT, I am SO FREAKING HAPPY that clonazepam will no longer be one of them!! Oh, and no anxiety or panic attack sort of thing. I also don't feel any cog fog. 

Hopefully, I'll be able to write a Success Story soon!

[[me...]]

Hi well done Jessamy you are on your way to benzo healing 

Sorry you are going thro chemo as well that's a downer 

But you sound strong so you can do it 

 😋🙏

[[Je...]]

6 minutes ago, [[m...] said:

Hi well done Jessamy you are on your way to benzo healing 

Sorry you are going thro chemo as well that's a downer 

But you sound strong so you can do it 

 😋🙏

Thank you so much! Yes, the chemo is definitely not fun, but I am Benzo Free! Let the healing begin!!

 

[[me...]]

Just now, [[J...] said:

Thank you so much! Yes, the chemo is definitely not fun, but I am Benzo Free! Let the healing begin!!

🥂😋😋😋😋

[[Li...]]

47 minutes ago, [[J...] said:

UPDATE on Taper. So, Sunday, October 22nd, was my last dose of clonazepam - went from 0.03125 mg to zero, so, that is my answer to HOW LOW DO YOU GO?. Yesterday I jumped, so no dose last night. Now, we just wait and see how my withdrawal goes. Hard to tell, really, because I also had chemotherapy yesterday, and *that* makes me feel rather awful, which is why I chose to jump. I'm figuring the side effects from chemo will likely somewhat mask the withdrawal symptoms. 

Symptoms include insomnia (but I get an infusion of 20 mg of Dexamethasone - a corticosteroid - with my treatment and THAT causes many of my symptoms ...), massive headache, pain in my legs, back, and ribs, running nose, tinnitus, fatigue (red blood cell counts are dropping), and irritability. Then again, as I said, I'm getting a lot of med. Ugh. BUT, I am SO FREAKING HAPPY that clonazepam will no longer be one of them!! Oh, and no anxiety or panic attack sort of thing. I also don't feel any cog fog. 

Hopefully, I'll be able to write a Success Story soon!

Congratulations!!   I am so happy for you.  Keep going and take it one day at a time