1. < Addiction & Recovery

My clonazepam story: More regulation seems to be coming

Posted by jackt @jackt, Dec 10, 2019

Serious auto accident 18 years ago. Operated on for a double subdural hematoma. Started experiencing extreme myoclonus a few months later. Put on clonazepam 1 mg/day to control it. C worked very well. Never had to increase dose. Still on 1 mg/day today and very happy with the results. No myoclonus.

Physician I have been with these last 18 years now is starting to increase visits. When all this started it was once every 6 months, then a few years ago increased to once every 4 months, then 3 months, now a year later he just told me he has to do it every 2 months. I can see the writing on the wall. Pretty soon it will be once every month. It's grueling to go to an appointment, usually takes 2.5 hours to get through the whole thing just for a 10 minute "What's new?" friendly chat and then the prescription. It's private pay so this is going to cost quite a bit if I have to do once a month, not to mention the 20 minute drive and $10 parking.

Long story short, hopefully. I'm very happy with the status quo. I have no side effects. Haven't had any to increase the dose. I'm 69 and what's my life expectancy, 8 years?? I'd be very happy to just stay on the C until I die of natural causes presumably around 78 according to life expectancy actuarials. It's the DEA that's upsetting the applecart with this witch hunt they're starting on benzos after having decimated hundreds of thousands of CPP's lives with their opiate crackdown by intimating doctors with prison and loss of their license. My pharmacist suggested my doctor is probably trying to ease me out his door to get rid of me. I tend to agree. But going to a new doctor is going to be very difficult with the climate against benzos now. Channel 4 Evening News is already labeling benzos, "The Next Opiate Crisis?" in a series of reports.

I'm in California and the laws are not too strict here, but is the DEA going to start forcing doctors to get their patients off benzos now like they did with the painkillers? What about people who need this medication because of TBI (traumatic brain injury)? is there anybody else out there who is thriving on the benzos but is being pressured by their doctors to either taper or leave? I would like some guidance on how to weather this storm.

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bustrbrwn22 | @bustrbrwn22 | Sep 21, 2020
In reply to @jackt "I feel for you, sears. I am pushing 70 and it's crazy the Feds have not..." + (show)
@jackt

I feel for you, sears. I am pushing 70 and it's crazy the Feds have not tried to exercise some judgment in who they subject this change in law to. People older than 65 should be given some leeway instead of being lumped in with 20 year olds who SHOULD be taken off these drugs. The bottom line is shortly no one in the United States will have access to these psychotropics. I mean what's next? Insulin? Interesting side effect of these de facto bans on tranquilizers/painkillers: more suicides save billions of dollars for Medicare/Social Security.

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@jackt Unfortunately I think I agree with you.

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 22, 2020

@sears

I just had a new restriction thrown at me. I had to get my doctor to submit prior authorization for my morphine, which took so long that my prescription was cancelled 4 months in a row. I was down to my last reserves, which I had accumulated by not taking all that I was prescribed. FINALLY, I got a notice today that I officially have prior authorization. The catch is that it's only good until the end of the year! I know now that I have to get that process started well before 12/31. I can't understand why it's necessary, especially as I've been taking it for a lot of years. Oregon is clamping down on opioids, and now they're really restricting the combination of opioid and benzodiazepines. This could lead to some very difficult times, especially if they take Clonazepam away too abruptly.

My therapy sessions are becoming more focused on the increased anxiety I'm having because of this medication mess. I don't dare increase my Clonazepam dose. The prescription is 1mg with option of taking a 2nd one. I haven't taken that 2nd one very many times, so I probably have enough of a stockpile to stretch out the tapering off nightmare.

Who knows where this is going to lead us.

Jim

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4 replies
Ellen | @helenfrances | Sep 22, 2020
In reply to @jimhd "@sears I just had a new restriction thrown at me. I had to get my doctor..." + (show)
@jimhd

@sears

I just had a new restriction thrown at me. I had to get my doctor to submit prior authorization for my morphine, which took so long that my prescription was cancelled 4 months in a row. I was down to my last reserves, which I had accumulated by not taking all that I was prescribed. FINALLY, I got a notice today that I officially have prior authorization. The catch is that it's only good until the end of the year! I know now that I have to get that process started well before 12/31. I can't understand why it's necessary, especially as I've been taking it for a lot of years. Oregon is clamping down on opioids, and now they're really restricting the combination of opioid and benzodiazepines. This could lead to some very difficult times, especially if they take Clonazepam away too abruptly.

My therapy sessions are becoming more focused on the increased anxiety I'm having because of this medication mess. I don't dare increase my Clonazepam dose. The prescription is 1mg with option of taking a 2nd one. I haven't taken that 2nd one very many times, so I probably have enough of a stockpile to stretch out the tapering off nightmare.

Who knows where this is going to lead us.

Jim

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I am tapering off of Clonazapam after years! of taking it for a head tremor. I now have a wonderful doc who has planned a slow taper.
I am praying that your plan is a good one for you or you find a doctor who can slowing taper you off of this drug. Support is so important.
There are support groups in some states that can help those who want to stop taking this drug.
Is there anyone on The Mayo website who has group names and state location?
Quite a while ago I was looking for a group but have lost the information.
I will ask my new physician if he has information.
Be assured that you are in my prayers

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Ellen | @helenfrances | Sep 22, 2020
In reply to @jimhd "@sears I just had a new restriction thrown at me. I had to get my doctor..." + (show)
@jimhd

@sears

I just had a new restriction thrown at me. I had to get my doctor to submit prior authorization for my morphine, which took so long that my prescription was cancelled 4 months in a row. I was down to my last reserves, which I had accumulated by not taking all that I was prescribed. FINALLY, I got a notice today that I officially have prior authorization. The catch is that it's only good until the end of the year! I know now that I have to get that process started well before 12/31. I can't understand why it's necessary, especially as I've been taking it for a lot of years. Oregon is clamping down on opioids, and now they're really restricting the combination of opioid and benzodiazepines. This could lead to some very difficult times, especially if they take Clonazepam away too abruptly.

My therapy sessions are becoming more focused on the increased anxiety I'm having because of this medication mess. I don't dare increase my Clonazepam dose. The prescription is 1mg with option of taking a 2nd one. I haven't taken that 2nd one very many times, so I probably have enough of a stockpile to stretch out the tapering off nightmare.

Who knows where this is going to lead us.

Jim

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Good for you for not taking the second one.
That is a beginning!

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Ellen | @helenfrances | Sep 22, 2020

This is going to lead us to a healthy life that we can fully enjoy. Stay the course, Jim.
I am looking forward to a clear headed life without a medication that is not going to provide that!
I wish the same for you.

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bustrbrwn22 | @bustrbrwn22 | Sep 22, 2020
In reply to @jimhd "@sears I just had a new restriction thrown at me. I had to get my doctor..." + (show)
@jimhd

@sears

I just had a new restriction thrown at me. I had to get my doctor to submit prior authorization for my morphine, which took so long that my prescription was cancelled 4 months in a row. I was down to my last reserves, which I had accumulated by not taking all that I was prescribed. FINALLY, I got a notice today that I officially have prior authorization. The catch is that it's only good until the end of the year! I know now that I have to get that process started well before 12/31. I can't understand why it's necessary, especially as I've been taking it for a lot of years. Oregon is clamping down on opioids, and now they're really restricting the combination of opioid and benzodiazepines. This could lead to some very difficult times, especially if they take Clonazepam away too abruptly.

My therapy sessions are becoming more focused on the increased anxiety I'm having because of this medication mess. I don't dare increase my Clonazepam dose. The prescription is 1mg with option of taking a 2nd one. I haven't taken that 2nd one very many times, so I probably have enough of a stockpile to stretch out the tapering off nightmare.

Who knows where this is going to lead us.

Jim

Jump to this post

@jimhd @ Sears. I would not be getting out of bed at all I’d it weren’t for the combo of a pain med and benzo’s. I spent many years (over 10) in a downward spiral as my psychiatrists tried me on every medication for my anxiety except a benzo. I was also seeing therapists. I actually spent several months on our couch having panic attack after panic attack (they last hours) until I found a doc willing to listen and hear me. Never mind the seizures and tardive dyskinesia I suffered from trying to find anything but a benzo. Why can’t what works for the patient be part of the prescriptive plan. I don’t want to go back to not showering, etc. I still have to conquer being able to open the mail and read emails that scare me because of what they might say. Now this forum might not be a safe haven as I feel someone judging me that I should be able to taper off of anything. I have a disease and nerve damage. What works for you might not work for me. My husband and I have discussed this and this somewhat quality of life is 100% better than where I was and he agrees with the risk. I am responsible about my dosage. Please don’t judge me.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 22, 2020
In reply to @bustrbrwn22 "@jimhd @ Sears. I would not be getting out of bed at all I’d it weren’t..." + (show)
@bustrbrwn22

@jimhd @ Sears. I would not be getting out of bed at all I’d it weren’t for the combo of a pain med and benzo’s. I spent many years (over 10) in a downward spiral as my psychiatrists tried me on every medication for my anxiety except a benzo. I was also seeing therapists. I actually spent several months on our couch having panic attack after panic attack (they last hours) until I found a doc willing to listen and hear me. Never mind the seizures and tardive dyskinesia I suffered from trying to find anything but a benzo. Why can’t what works for the patient be part of the prescriptive plan. I don’t want to go back to not showering, etc. I still have to conquer being able to open the mail and read emails that scare me because of what they might say. Now this forum might not be a safe haven as I feel someone judging me that I should be able to taper off of anything. I have a disease and nerve damage. What works for you might not work for me. My husband and I have discussed this and this somewhat quality of life is 100% better than where I was and he agrees with the risk. I am responsible about my dosage. Please don’t judge me.

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@bustrbrwn22 You are absolutely correct that medications work differently for different people. The combination of body chemistry, and other medications, I think, are the main reason there may be so many different ways to approach a situation. Like @jimhd has often told us in his journey, what works for you for awhile, may eventually not do the job. I am on an antidepressant that works for me, but others do not get the same beneficial result. Would I like to be rid of it? Yes, once I know I am in a better place. But that doesn't mean I will ever be off of it.

I hope @helenfrances has success in her tapering and cessation. Not all of us can do that.

@jimhd Yes, starting the re-approval process will take time. You are wise to stay ahead of the curve. I hope your anxiety over medication issues lessens.
Ginger

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1 reply
cb772 | @cb772 | Sep 22, 2020

I understand completely! I'm 67 & live in Florida where doctors practice CYA medicine. They're all afraid to prescribe Clonazapam with hydrocodone despite me assuring them I'll sign a waiver of responsibility for them. I have dealt with chronic 24/7 pain since 1996 & the anxiety & depression that accompanies it. In all that time, I've never had issues with my pain & Benzo doses. I just want to live my life more comfortably & I'm not concerned with it shortening my life. I'm tired of being disabled & hurting, falling, feeling anxious all the time. Why don't they understand that?

REPLY
1 reply
sears | @sears | Sep 22, 2020
In reply to @jimhd "@sears I just had a new restriction thrown at me. I had to get my doctor..." + (show)
@jimhd

@sears

I just had a new restriction thrown at me. I had to get my doctor to submit prior authorization for my morphine, which took so long that my prescription was cancelled 4 months in a row. I was down to my last reserves, which I had accumulated by not taking all that I was prescribed. FINALLY, I got a notice today that I officially have prior authorization. The catch is that it's only good until the end of the year! I know now that I have to get that process started well before 12/31. I can't understand why it's necessary, especially as I've been taking it for a lot of years. Oregon is clamping down on opioids, and now they're really restricting the combination of opioid and benzodiazepines. This could lead to some very difficult times, especially if they take Clonazepam away too abruptly.

My therapy sessions are becoming more focused on the increased anxiety I'm having because of this medication mess. I don't dare increase my Clonazepam dose. The prescription is 1mg with option of taking a 2nd one. I haven't taken that 2nd one very many times, so I probably have enough of a stockpile to stretch out the tapering off nightmare.

Who knows where this is going to lead us.

Jim

Jump to this post

This is all a mess for sure. The pandemic. We just found out my only sibling, my sister, has small cell lung cancer and won’t be with us much longer. Worrying about meds and doctors and what the government will do next. I’m really in a bad place right now.

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2 replies
sears | @sears | Sep 22, 2020
In reply to @cb772 "I understand completely! I'm 67 & live in Florida where doctors practice CYA medicine. They're all..." + (show)
@cb772

I understand completely! I'm 67 & live in Florida where doctors practice CYA medicine. They're all afraid to prescribe Clonazapam with hydrocodone despite me assuring them I'll sign a waiver of responsibility for them. I have dealt with chronic 24/7 pain since 1996 & the anxiety & depression that accompanies it. In all that time, I've never had issues with my pain & Benzo doses. I just want to live my life more comfortably & I'm not concerned with it shortening my life. I'm tired of being disabled & hurting, falling, feeling anxious all the time. Why don't they understand that?

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They understand. They just don’t really care. No one cares about mental illness and the government wants to make it worse.

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