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.

Interested in more discussions like this? Go to the Addiction & Recovery Support Group.

@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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You will never be judged on this site. Let us know who is being judgmental.

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@cb772

Very true!

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Even Mayo won't prescribe them.

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@gingerw

@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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@jimhd @sears. Weird. I was just typing in a response and received a call from the pain mgt clinic I go to and receive a minute pain prescription for. I had a cortisone injection scheduled for tomorrow. They said my procedure was canceled (they had just called yesterday to verify it) and that all of their offices were closed as of now. I asked about referrals to a new dr and they said the patients were on their own with that. Someone had mentioned a magical Sept 23
date and I can’t help but notice it’s the 22nd. So what is up with 9/23?

Scared to death.

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@bustrbrwn22

@jimhd @sears. Weird. I was just typing in a response and received a call from the pain mgt clinic I go to and receive a minute pain prescription for. I had a cortisone injection scheduled for tomorrow. They said my procedure was canceled (they had just called yesterday to verify it) and that all of their offices were closed as of now. I asked about referrals to a new dr and they said the patients were on their own with that. Someone had mentioned a magical Sept 23
date and I can’t help but notice it’s the 22nd. So what is up with 9/23?

Scared to death.

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Why isn’t alcohol a target? Drunk driving and while impaired is very real and people die from this. Or from OD’g on alcohol. Where’s the difference?

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@bustrbrwn22

@jimhd @sears. Weird. I was just typing in a response and received a call from the pain mgt clinic I go to and receive a minute pain prescription for. I had a cortisone injection scheduled for tomorrow. They said my procedure was canceled (they had just called yesterday to verify it) and that all of their offices were closed as of now. I asked about referrals to a new dr and they said the patients were on their own with that. Someone had mentioned a magical Sept 23
date and I can’t help but notice it’s the 22nd. So what is up with 9/23?

Scared to death.

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I'm so sorry you're having to deal with all that. I'm in the process, once again, of trying to find a new pain management doctor. Could you ask your primary care doc to help you find a specialist & take over your pain meds until you're established with a new specialist?

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@bustrbrwn22

Why isn’t alcohol a target? Drunk driving and while impaired is very real and people die from this. Or from OD’g on alcohol. Where’s the difference?

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Good question!

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@cb772

Good question!

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Let’s put cigarettes on the list.

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@sears

Let’s put cigarettes on the list.

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That would make sense if we are following the same rules.

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@cb772

I'm so sorry you're having to deal with all that. I'm in the process, once again, of trying to find a new pain management doctor. Could you ask your primary care doc to help you find a specialist & take over your pain meds until you're established with a new specialist?

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@cb772 My PCP does not believe in pain meds and does not think I (or anyone else) should be taking them. Maybe it’s a Wisconsin thing? We’re so conservative. We still haven’t even legalized medical marijuana.

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