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. 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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That is weird. The clinic closed down from one day to the next and there’s no one you can speak to about this?

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@bustrbrwn22

@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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I wonder what your doc would do if he or someone in his family were in debilitating pain?

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@sears

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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@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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@cb772

Even Mayo won't prescribe them.

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What is Mayo’s recommendation for people that live with sever pain everyday and have no quality of life?

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@sears

That is weird. The clinic closed down from one day to the next and there’s no one you can speak to about this?

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@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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I can certainly understand the frustration that is coming through loud and clear in this discussion. Living with pain sucks. It can be a long and challenging path to find relief, to find the right therapies and to find a medical professional who will listen, understand and work with you. I feel your pain (pun intended).

At Mayo Clinic, pain medicine specialists are experts in helping adults and children with a wide range of painful disorders. They listen to your concerns and develop an individualized treatment plan to make sure you get the right therapy when you need it. For people with complicated medical histories and multidimensional pain syndromes, treatment may be multifaceted and require complex interventions. Mayo Clinic's dedicated team of pain medicine experts carry out tens of thousands of procedures and surgeries each year. These doctors are experienced with the full range of options, including drug treatment, pain rehabilitation and management, injection therapies, and implantable pain management devices — such as spinal cord stimulators.

You can read more on these pages:
– Pain Medicine https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061
– Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
– Adult Pain Medicine Blog https://connect.mayoclinic.org/page/adult-pain-medicine/

Whether you're a patient at Mayo Clinic or not, it is always important to advocate for your care. And that can be really hard when you're in pain. I get that. But don't give up.

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@sears

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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@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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@colleenyoung

I can certainly understand the frustration that is coming through loud and clear in this discussion. Living with pain sucks. It can be a long and challenging path to find relief, to find the right therapies and to find a medical professional who will listen, understand and work with you. I feel your pain (pun intended).

At Mayo Clinic, pain medicine specialists are experts in helping adults and children with a wide range of painful disorders. They listen to your concerns and develop an individualized treatment plan to make sure you get the right therapy when you need it. For people with complicated medical histories and multidimensional pain syndromes, treatment may be multifaceted and require complex interventions. Mayo Clinic's dedicated team of pain medicine experts carry out tens of thousands of procedures and surgeries each year. These doctors are experienced with the full range of options, including drug treatment, pain rehabilitation and management, injection therapies, and implantable pain management devices — such as spinal cord stimulators.

You can read more on these pages:
– Pain Medicine https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061
– Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
– Adult Pain Medicine Blog https://connect.mayoclinic.org/page/adult-pain-medicine/

Whether you're a patient at Mayo Clinic or not, it is always important to advocate for your care. And that can be really hard when you're in pain. I get that. But don't give up.

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Thank you so very much for your reply.

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@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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