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.

@deedee080799

I am 74, and have depression,as my mother did. I have tried many antidepressants, Wellbutrin was the best,but psychiatrist put me on highest dose, 450,had a seizure. Started on several, didn't do much. Pristiq is good,but my psychiatrist added, Adderall 20 mg daily. OMG I felt so good, I went shopping, visiting talking on phone, neighbors great feeling,but now I fear I can't get off the Adderall. I have dropped it to 10mg a day, but what am I going to do. If I stop, I will lay in the bed all day,depressed.All my Drs say it is ok to take Adderall but can anyone suggest a stimulant to make me get out of bed. I feel, I am hooked, and will not be able to get off. I can't exercise, have stints in bladder, but hallelujah I have just learned SUDUKO.
I MAY TRY ACUPUNCTURE.
THANKS
DIANE

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Hi @deedee080799, so good to hear that Pristiqu and Adderall are working for you. I know that the feeling of "being hooked" may have you nervous. But is there any reason not to continue if the combo is working for you?

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I live in Canada and we are also getting controlled as well…the past three years were awful, my family doctor started pushing me to reduce my dosage, he actually reduced it without talking it over with me, no plan on how to properly take me off them, best part is, he’s the doctor that introduced me to benzodiazepine over 20 years ago. I was recently contacted by the pharmacy where I go, they wanted to review my meds and she asked me a lot of questions about Ativan which is what I use..she remarked on how long I’ve been using them and went further by saying how bad these drugs are especially for older women like me.. I definitely could feel that this was different from other times. I asked her questions about what she was doing, I thought perhaps she was a government official but she said she’s working for the pharmacy. In Canada they are also cracking down on pharmacies and doctors..the drug is now a “black box” label which really makes me feel uncomfortable…long story short, I also want to live out my life without another pressure of withdrawal.. I’m diligent with my meds, I stay on the same dose for years and God only knows I don’t have the strength to do a withdrawal…I have battled cancer twice in the past three years and I also have long covid from an infection last year November…I just want to be left alone in the few years I may have left.

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@frouke

I’m like you. It’s been 30 years now. I’ve probably experienced side effects by now!

WHAT 🤯 ANXIETY?! (lol)

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I said a couple of years ago that I dealt with the challenge of juggling MS contin and Klonopin prescriptions. I still have a prescription for 1mg of Klonopin bid, but I take 1/2mg in the morning and 1 at bedtime. But I got really tired of the hassle of dealing with Ms contin, so I tried buprenorphine with no success and now I'm trying Topamax - not sure how much it's helping. I wish I could go back to the ms contin that actually treated my pain. Then my neurologist and pain specialist wouldn't have to keep trying new meds on me. But about the Klonopin - there's been no indication from any of my doctors that there is coming a restriction on it. My mail order (Center Well Pharmacy, formerly Humana Pharmacy) takes care of getting it refilled every month and mailed to me on time .

Have to stop for a video appointment with the pain specialist.

Jim

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@jimhd

I said a couple of years ago that I dealt with the challenge of juggling MS contin and Klonopin prescriptions. I still have a prescription for 1mg of Klonopin bid, but I take 1/2mg in the morning and 1 at bedtime. But I got really tired of the hassle of dealing with Ms contin, so I tried buprenorphine with no success and now I'm trying Topamax - not sure how much it's helping. I wish I could go back to the ms contin that actually treated my pain. Then my neurologist and pain specialist wouldn't have to keep trying new meds on me. But about the Klonopin - there's been no indication from any of my doctors that there is coming a restriction on it. My mail order (Center Well Pharmacy, formerly Humana Pharmacy) takes care of getting it refilled every month and mailed to me on time .

Have to stop for a video appointment with the pain specialist.

Jim

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You may indeed have a problem with the Klonopin should your current doctor retire, die or move. Due to pressure from the DEA doctors are just not prescribing benzodiazepines like they used to. Finding a new doctor to prescribe could becomes very problematic. Beware. The various benzo forums are full of people that this is happening to right now. The doctors now now are shifting to antidepressants and antipsychotics to deal with anxiety.

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I asked the pain specialist if there was anything in the wind about Klonopin regulations and she said she hadn't heard anything about any changes in Oregon. I was prescribed 1mg bid in 2006 by a psychiatrist for anxiety disorder and the prescription has never changed. My neurologist also encourages me to continue it for RLS and whole body limb movement (and so does my wife, as it keeps me from acting out my more violent dreams).

Every time I visit my various specialists I press the question of pain pumps. There's hope that the pain clinic will hire a doctor to maintain pumps in the next year or two. I've been approved for all of it but there's only one doctor in my area who does maintenance, and he's fully booked. I'll write more later.

Jim

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