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.

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@thankful

@faithwalker007- Renee, I totally agree with you on Only doing this with our providers help!
I should have included that as part of my steps. Thank you for reminding all of us of that important step! Jim @thefinalquest

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You’re welcome. If I can help in any way, let me know.

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I intend on reminding the Wyoming legislature (committee) why they need legislation to prevent this very thing from hopefully continuing in Wyoming. Wyoming is leading the suicide rate in the nation at over twice the national average and climbing. I was actually told by the don’t punish pain rally National coordinator that she thought WY didn’t have a problem with chronic pain services. I almost cried. I wondered to myself if she’d even bother to ask anybody in Wyoming with chronic pain. It’s not too hard to find us if you really look. But then again I didn’t even know about that don’t punish punish pain rally group at all. As far as I’m concerned there’s no one to really take responsibility for this type of situation except the government and their stupidity when it comes to enforcing some thing that isn’t supposed to be enforced anyway. All I know is chronic pain patients are the forgotten group when it comes to pain management. Other pain patients get pain relief without asking for it. 1. Acute pain patients a.k.a. I break my arm, I get pain relief. 2. Surgery pain a.k.a. I have an appendicitis or I need my knee worked on, I get pain relief. 3. End of life pain a.k.a. cancer pain Alzheimer’s or horrendous other types of end of days pain, I get relief. But when it comes to chronic life-changing, life altering pain, we are lumped in with at”ducts, drug dealers, bottom of the barrel criminals, and people on meth who are seeking things that rank us with the worst people on the earth. We are not thought of it remembered as US citizens who want to make our lives productive. Instead as productive citizens we’re forgotten and brushed aside. We are forced into the pain riddled, mind-numbing creatures that they are forcing us to be without relief. And then lumped into a group of inhuman, unconscionable addicts and criminals of which we do not belong. And that, my friends, is the biggest crime of all.

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@faithwalker007

I intend on reminding the Wyoming legislature (committee) why they need legislation to prevent this very thing from hopefully continuing in Wyoming. Wyoming is leading the suicide rate in the nation at over twice the national average and climbing. I was actually told by the don’t punish pain rally National coordinator that she thought WY didn’t have a problem with chronic pain services. I almost cried. I wondered to myself if she’d even bother to ask anybody in Wyoming with chronic pain. It’s not too hard to find us if you really look. But then again I didn’t even know about that don’t punish punish pain rally group at all. As far as I’m concerned there’s no one to really take responsibility for this type of situation except the government and their stupidity when it comes to enforcing some thing that isn’t supposed to be enforced anyway. All I know is chronic pain patients are the forgotten group when it comes to pain management. Other pain patients get pain relief without asking for it. 1. Acute pain patients a.k.a. I break my arm, I get pain relief. 2. Surgery pain a.k.a. I have an appendicitis or I need my knee worked on, I get pain relief. 3. End of life pain a.k.a. cancer pain Alzheimer’s or horrendous other types of end of days pain, I get relief. But when it comes to chronic life-changing, life altering pain, we are lumped in with at”ducts, drug dealers, bottom of the barrel criminals, and people on meth who are seeking things that rank us with the worst people on the earth. We are not thought of it remembered as US citizens who want to make our lives productive. Instead as productive citizens we’re forgotten and brushed aside. We are forced into the pain riddled, mind-numbing creatures that they are forcing us to be without relief. And then lumped into a group of inhuman, unconscionable addicts and criminals of which we do not belong. And that, my friends, is the biggest crime of all.

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@faithwalker007
Wow, so well said Renee. So well said! You should be a national spokesperson for all the chronically pain suffering honest yet struggling folks who are being punitively brutalized by the stupid laws the legislatures (talk about mind-numbing creatures) pass. 😠

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@faithwalker007

I intend on reminding the Wyoming legislature (committee) why they need legislation to prevent this very thing from hopefully continuing in Wyoming. Wyoming is leading the suicide rate in the nation at over twice the national average and climbing. I was actually told by the don’t punish pain rally National coordinator that she thought WY didn’t have a problem with chronic pain services. I almost cried. I wondered to myself if she’d even bother to ask anybody in Wyoming with chronic pain. It’s not too hard to find us if you really look. But then again I didn’t even know about that don’t punish punish pain rally group at all. As far as I’m concerned there’s no one to really take responsibility for this type of situation except the government and their stupidity when it comes to enforcing some thing that isn’t supposed to be enforced anyway. All I know is chronic pain patients are the forgotten group when it comes to pain management. Other pain patients get pain relief without asking for it. 1. Acute pain patients a.k.a. I break my arm, I get pain relief. 2. Surgery pain a.k.a. I have an appendicitis or I need my knee worked on, I get pain relief. 3. End of life pain a.k.a. cancer pain Alzheimer’s or horrendous other types of end of days pain, I get relief. But when it comes to chronic life-changing, life altering pain, we are lumped in with at”ducts, drug dealers, bottom of the barrel criminals, and people on meth who are seeking things that rank us with the worst people on the earth. We are not thought of it remembered as US citizens who want to make our lives productive. Instead as productive citizens we’re forgotten and brushed aside. We are forced into the pain riddled, mind-numbing creatures that they are forcing us to be without relief. And then lumped into a group of inhuman, unconscionable addicts and criminals of which we do not belong. And that, my friends, is the biggest crime of all.

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Amen.

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@cb772

@faithwalker007 You are correct. My doctor decided very suddenly last year that she wouldn't refill my script for Clonazepam. I went from 3 mg daily to being cut off & not allowed to slowly withdraw. It was hell for over 2 weeks.

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You were treated worse than an animal. The U.S has much more respect for animals than humans. This is all so sad.

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@jesfactsmon

@faithwalker007
Wow, so well said Renee. So well said! You should be a national spokesperson for all the chronically pain suffering honest yet struggling folks who are being punitively brutalized by the stupid laws the legislatures (talk about mind-numbing creatures) pass. 😠

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cbd is helpful with pain issues

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Yes wont repeat story here but pressured and cut off Benzo.. didnt even know it was one til Feb.2019.... wanted me off after last 5 pills afterover fifteenyears one a day and no questions asked. then gp put me on half a day and i spilled drink over a FEW and needed before end of month and he refused. Pharmacist came to my rescue as he knew I dont abuse meds. After a couple of months he, gp, got mad at me , long story, i telephoned ontario college of physicians and surgeons to get advise not about pills but he raised his voice and discussed my case in front of people in waiting room, one of whom was my ex husbands ex wiife! Was in office later just he and receptionist and he again lambasted me. College was great i did not put in complaint but they phoned him, next visit he let me go from practice and there is more. My pharmacist said i was not addicted but body now dependent on it... for sleep. Long story short a specialist in another field has renewed my one a day pill and at 77 I hope it takes me to my death. I have a laundry list of other physical illnesses and had depression for past 2 years etc. ... WHY all of a sudden get rid of those pills.. have you read the information sheets in with some of the medications they are now prescribe for all kinds of ailments....some side effects being blindness, neuropathy, seizures etc etc etc.., no worse than Clonazepam in my humble opinion. There is more to the story.. I think they want us of inexpensive Clonazepam and put us on higher priced drugs? Not sure... but there is a reason behind this and I would love to know what it is. J. Canada (excuse typos typing quickly)

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@lacy2

Yes wont repeat story here but pressured and cut off Benzo.. didnt even know it was one til Feb.2019.... wanted me off after last 5 pills afterover fifteenyears one a day and no questions asked. then gp put me on half a day and i spilled drink over a FEW and needed before end of month and he refused. Pharmacist came to my rescue as he knew I dont abuse meds. After a couple of months he, gp, got mad at me , long story, i telephoned ontario college of physicians and surgeons to get advise not about pills but he raised his voice and discussed my case in front of people in waiting room, one of whom was my ex husbands ex wiife! Was in office later just he and receptionist and he again lambasted me. College was great i did not put in complaint but they phoned him, next visit he let me go from practice and there is more. My pharmacist said i was not addicted but body now dependent on it... for sleep. Long story short a specialist in another field has renewed my one a day pill and at 77 I hope it takes me to my death. I have a laundry list of other physical illnesses and had depression for past 2 years etc. ... WHY all of a sudden get rid of those pills.. have you read the information sheets in with some of the medications they are now prescribe for all kinds of ailments....some side effects being blindness, neuropathy, seizures etc etc etc.., no worse than Clonazepam in my humble opinion. There is more to the story.. I think they want us of inexpensive Clonazepam and put us on higher priced drugs? Not sure... but there is a reason behind this and I would love to know what it is. J. Canada (excuse typos typing quickly)

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Most antidepressants are just as bad if not worse than any benzodiazepine. One becomes extremely dependent on these meds and they are hell to get off of. Also they really do nothing for debilitating anxiety.

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@sears

Most antidepressants are just as bad if not worse than any benzodiazepine. One becomes extremely dependent on these meds and they are hell to get off of. Also they really do nothing for debilitating anxiety.

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....yes Sears and many hundreds of medications worse than bonzos and worse than anti-depressants: even my eye drops , long term use especially its frightening what "could"happen. The fact some of us have been on Clonazepam for over 15 years and are still here to talk about it says something! Now I discover my neuropathy and internal tremors MAY have been caused by dental freezing! Nothing is 100 per cent without chance of someone somewhere getting serious side effects - even from peanut butter!

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