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.

@colleenyoung

@sears I'm very sorry to hear about your sister. I can imagine that this is very stressful for you and your family. Did you know that there is a Lung Cancer support group here on Connect? See https://connect.mayoclinic.org/group/lung-cancer/

You might be interested in this specific discussion:
– Small Cell Lung Cancer https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/

Members of the Lung Cancer group are fantastic and they are ready to offer support, answer questions and help you navigate this new territory.

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Thank you Colleen!

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@bustrbrwn22

@sears they have one call in number and the people that answer the phone are the only ones you can talk to. I had something weird happen with my S1 nerve that made the pain so unbearable I was literally crying for days, I must have moved wrong. I called “the number” to see if I could get an emergency appt. Nope. I should buy some OTC lidocaine patches until my next appt. That was a rough couple of weeks. I iced and TENS’d and went to the bathroom. Didn’t leave that spot on the couch. Almost sounds made up but it isn’t. Maybe in some people’s minds I was just looking for more drugs for a high. I’m one of those people who don’t get the “high” from this painkiller which I’m grateful for. It does allow me to walk at least half an hour a day and use some light weights so I don’t atrophy totally all over my body. I can contribute at least a little to my husband and fur baby by washing dishes and clothes, making the bed, and usually walking the dog mid-day.

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It makes me furious when we’re called drug seekers. Absolutely livid! Let’s start callIng diabetics drugs seekers. Maybe insulin causes a “high”? 🤬🤬🤬🤬🤯🤯🤯

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@bustrbrwn22

@sears. I apologize for being so selfish and only ranting about my crisis. I am sorry to hear about your sister. Please reach out if you ever need support.

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Thank you so much. Didn’t even notice you didn’t mention my sister. No problem!

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@sears

It makes me furious when we’re called drug seekers. Absolutely livid! Let’s start callIng diabetics drugs seekers. Maybe insulin causes a “high”? 🤬🤬🤬🤬🤯🤯🤯

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We are not drug seekers …and good physicians are not drug pushers or lackeys of pharmaceutical companies.

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@jackt

No, no that's not what I said, or meant to say. What I was saying was that the government, by making it near impossible for people who have a legitimate need for them to get access to these drugs, will inadvertently, push people to the streets to get what the people need in order to keep their quality of life at a subpar level. People who live in fear of blind panic descending will do almost anything to avoid having it. That's not the case so much with seniors, who have no street smarts to be able to navigate the mean streets as it is with young people who do. And I don't want to say anymore about this, sears because I don't want to turn this into a political discussion.

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Hi..I have a Telemed Doctor who I meet with once a month. I only pay 26.70 because I am on Medicare. But I recently had to watch a video on benzos before I got my script refilled. I agree with you, people are gonna have to start turning to the black market, and die in the streets, like the opioid addicts. The government wants it that way. I think cannabis is going to experience a very large explosion in usage.

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@katyripp1967

Hi..I have a Telemed Doctor who I meet with once a month. I only pay 26.70 because I am on Medicare. But I recently had to watch a video on benzos before I got my script refilled. I agree with you, people are gonna have to start turning to the black market, and die in the streets, like the opioid addicts. The government wants it that way. I think cannabis is going to experience a very large explosion in usage.

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@katyripp1967
IMHO the only way this war on people who need painkillers is going to change is for a concerted political effort to take form by a lot of motivated people. It will take political pressure by many united pain sufferers and their advocates to get anyone's attention to this. It's sad but I am afraid it's true. Renee, @faithwalker007 , knows what I am talking about. She is actually trying to do something about it. Read her posts. Hank

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@helenfrances

We are not drug seekers …and good physicians are not drug pushers or lackeys of pharmaceutical companies.

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Please, I ask for your prayers as I continue my taper:

The new neurologist (who is on vacation) outlined a program for titrating off of Clonazapam:

The taper continues from taking 4-5 pills a day
to :
1. a gradual taper to one pill a day for a month.
(Two halves) per day went well.

2. I tried the next stage: a half pill a day …and had what seemed like a seizure.

Since my new doctor who outlined my titration off of Clon is on vacation I called the initial
prescribing doctor: He said “You are no longer my patient.”

Our family doctor and the P..A. in the practice made sure that I had enough Clon to complete my taper.
(The doctor who outlined my taper is on vacation.)

I find it ? That the original prescriber would not even talk to me… he emailed me. “You are no longer my patient.”

We are strong and carry on. If you take a Benzo, seek help. There IS help and hope for you.

benzodiazepine! That word has given new meaning to my life and more understanding of those who are dependent on drugs, alcohol, …and ?

Stay safe and take care of you…. That will enable you to be the best you ..and to help others.

Ellen

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So what do you plan on doing?

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@jesfactsmon

@katyripp1967
IMHO the only way this war on people who need painkillers is going to change is for a concerted political effort to take form by a lot of motivated people. It will take political pressure by many united pain sufferers and their advocates to get anyone's attention to this. It's sad but I am afraid it's true. Renee, @faithwalker007 , knows what I am talking about. She is actually trying to do something about it. Read her posts. Hank

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What is IMHO?

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In reply to @katyripp1967 "What is IMHO?" + (show)
@katyripp1967

What is IMHO?

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@katyripp1967
It's digital shorthand. Stands for "in my humble opinion". 😊 Hank

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@helenfrances

Please, I ask for your prayers as I continue my taper:

The new neurologist (who is on vacation) outlined a program for titrating off of Clonazapam:

The taper continues from taking 4-5 pills a day
to :
1. a gradual taper to one pill a day for a month.
(Two halves) per day went well.

2. I tried the next stage: a half pill a day …and had what seemed like a seizure.

Since my new doctor who outlined my titration off of Clon is on vacation I called the initial
prescribing doctor: He said “You are no longer my patient.”

Our family doctor and the P..A. in the practice made sure that I had enough Clon to complete my taper.
(The doctor who outlined my taper is on vacation.)

I find it ? That the original prescriber would not even talk to me… he emailed me. “You are no longer my patient.”

We are strong and carry on. If you take a Benzo, seek help. There IS help and hope for you.

benzodiazepine! That word has given new meaning to my life and more understanding of those who are dependent on drugs, alcohol, …and ?

Stay safe and take care of you…. That will enable you to be the best you ..and to help others.

Ellen

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@helenfrances @sears

Recently, taking benzodiazepines and opioids together has become a red flag for the state pain control commission here in Oregon. It means, for now at least, getting prior authorization approval through my doctor. I just started last week taking Cymbalta for neuropathy, and it required prior authorization approval. So, now I have to go through the process for 2 medications. I got approved for Cymbalta through the end of 2021, but Morphine approval is only good until the end of 2020 (hoping that when I have to go through the approval next month will be good for a year).

I've been taking clonazepam 1mg for 15 years, and mscontin for 7, and never had to get approval until this summer. Something has changed to make me get approval all of a sudden. Initially, I was prescribed Clonazepam for anxiety,, but along the way I found that it also has treated my restless leg syndrome. My wife is happy that I don't kick in my sleep anymore.

You said that you were taking 4-5 pills. Was that 1mg pills? Tapering off Clonazepam is a really, really long, slow process. I would anticipate it taking longer than a year, and from what I've read from others, the final low dose is the hardest, and takes an even slower taper.

For now, I depend on Clonazepam to do its job. Dependence is not the same as addiction. I depend on Meloxicam and voltaren cream to reduce the arthritis pain, especially in my hands, enough so I can write and play the piano without awful pain. So, I am dependent on them to make it possible for me to function. Diabetics are dependent on insulin. People with OAB depend on Myrbetric. So, being dependent on a medication is nothing to be ashamed of, or afraid of. Renee, who's a pharmacist, @faithwalker007 has explained the differences very well, and I've found her to be a great resource on this whole issue.

So, where are you in the titration process? I'll be interested in hearing how it goes for you.

Jim

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I’d be interested also if you’re willing to share.

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