My clonazepam story: More regulation seems to be coming
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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In California where I am a dr cannot write a script for more than 120 pills. If it's a phone in a month at a time then maybe that can be stretched to 6 months. I don't like to do call-ins because sometimes the staff forgets to call it in and if I am on a Friday with my last pill I have to go the weekend without anything. That's horrible. As to the other, I'm reading a lot on the Internet and seeing news episodes "Are Benzos the Next Opioid Crisis?" obviously people in high places are trying to make benzos into a taboo medication that dr's shouldn't prescribe just like they did with the painkillers. I feel it is just a matter of time.
Would anyone from Mayo like to respond to Will Benzos become the next opioid crisis?
Hi, @jackt – first of all, I'd like to invite some others into this conversation about the potential stricter regulation by the medical field when a patient is taking a benzodiazepine such as clonazepam, which you are taking and noted is now requiring much more frequent doctor visits to continue the prescription, even though you have no side effects, have had good results and been at a stable dosage for years. Please meet @jakedduck1 @grandmaj5 @georgette12 @helenfrances @elwooodsdad @jimhd.
jackt – have you seen further evidence that the clonazepam is being more strictly regulated since you mentioned this issue in December?
So far, my morphine sulfate contin and Clonazepam are the only meds I take that have to have a fresh prescription monthly. The morphine prescription is tid, and I try to take it only once or twice a day. My Clonazepam is 1mg bid, but I rarely take the second one. I keep a close eye on refill timing and send a message to my doctor a few days ahead of the renewal date, and he submits e-pre scriptions to my mail order pharmacy. An extra help is that the pharmacy sends me notices when I need to refill or renew a scrip. I'm supposed to visit my PCP monthly because of the ms contin.
So I have to stay on top of my meds more than I used to. I try to work it out so that I'm a month ahead. Knowing that there could be stricter regulations down the road, I like to be prepared. I've been cut back from 30mg tid to 15mg tid on the morphine, and it could be a problem getting more oxycodone for break through pain when I use up what I have. I save it for when my back hurts so much that I can't function or sleep. That's pretty rare.
I'm glad that I have an existing long term chronic pain treatment with morphine. Getting something like that is probably hard to set into motion now. Doctors and pharmacies will only give a 7 day for post surgery pain, and I don't know what happens to people whose pain moves from acute to chronic pain. It's becoming a real hardship for lots of people.
I'm also 69, @sears @jackt I haven't heard anything about tapering off Clonazepam, either from my PCP or psychiatrist. It's down to a single month prescription of 60 pills, from a 3 month prescription not long ago. I can't imagine having to stop it. I started taking it in 2006, and have taken a second pill a very few times, and it's controlled my anxiety for the most part. At least importantly is the off label benefit of keeping my legs still at night. For my wife's safety, my doctor agrees that I need to continue taking it.
I've had major depression for a long time, was diagnosed in 2002, and diagnosed in 2006 with anxiety disorder, OCD and PTSD in addition to depression. I made several suicide attempts in 2005, and the suicidal ideation continued for around 5 years. I still am only marginally safe because the thoughts are always present, and I honestly don't know how I would handle being denied either the psychotropic or the chronic pain meds. I think about how I'd be able to get medications, but the options aren't good – the streets or other illegal sources or other countries? – I don't really know. I just hope that it doesn't come to that.
I hear ya Jim. I’m in the same boat minus the pain meds. It’s all getting scary and leaving those of us who suffer with few choices. I’m starting the tapering process as I don’t want to be forced into a taper. That for me would me much worse. I’m a nervous wreck just thinking about the future. I’m too old for all this. My doctor should have suggested tapering years and years ago. He shouldn’t have waited until I was 67. I’ve switched doctors. I’ll never forgive my previous doctor for leaving me on Xanax so long and telling me it was just fine. My internist was all on board too.
@sears Is there another anti-anxiety medication that's a lower level than Xanax or Clonazepam that's less likely to make a political hit list? I guess I need to talk with my doctor about it.
When the medical profession starts taking mental illness as serious as physical illness perhaps things will change. As of now we with mental or chronic pain conditions are treated as drug seeking freaks from the same doctors that prescribed them in the first place. Our quality of lives are going downhill fast and no one cares.
I don’t know of any that really help. Let me know if you come up with one.
Jim, thank you so much for sharing your experience in such depth. Your openness and honesty gives me hope for myself and determination to win my battle with anxiety. We are all fortunate to have you as a Volunteer Mentor!
Please keep up the good work!