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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Ellen | @helenfrances | Oct 24, 2020

In reply to @helenfrances "Please, I ask for your prayers as I continue my taper: The new neurologist (who is..." + (show)

A noticeable effect of taking Clonazapam is forgetting, repeating yourself ... as evidenced by my posts.
We do not have Alzheimer’s in my family history... and most lived to their 80’s and 90’s! They were involved in church activities, garden clubs, repairing their homes. My 90 year old grandfather put a new roof on his small garage, the other grandfather gardened and attended church, ... I could go on .. both sides of my family were active and coherent in old age, as were my parents.
I had no memory impairment until I took Clonazapam.
Coincidence?
The script information: “May affect memory and mood.” I recently read that... too late?!

Faithwalker007 (Renee) | @faithwalker007 | Oct 24, 2020

In reply to @jimhd "@helenfrances @sears Recently, taking benzodiazepines and opioids together has become a red flag for the state..." + (show)

@jimhd

@helenfrances @sears

Recently, taking benzodiazepines and opioids together has become a red flag for the state pain control commission here in Oregon. It means, for now at least, getting prior authorization approval through my doctor. I just started last week taking Cymbalta for neuropathy, and it required prior authorization approval. So, now I have to go through the process for 2 medications. I got approved for Cymbalta through the end of 2021, but Morphine approval is only good until the end of 2020 (hoping that when I have to go through the approval next month will be good for a year).

I've been taking clonazepam 1mg for 15 years, and mscontin for 7, and never had to get approval until this summer. Something has changed to make me get approval all of a sudden. Initially, I was prescribed Clonazepam for anxiety,, but along the way I found that it also has treated my restless leg syndrome. My wife is happy that I don't kick in my sleep anymore.

You said that you were taking 4-5 pills. Was that 1mg pills? Tapering off Clonazepam is a really, really long, slow process. I would anticipate it taking longer than a year, and from what I've read from others, the final low dose is the hardest, and takes an even slower taper.

For now, I depend on Clonazepam to do its job. Dependence is not the same as addiction. I depend on Meloxicam and voltaren cream to reduce the arthritis pain, especially in my hands, enough so I can write and play the piano without awful pain. So, I am dependent on them to make it possible for me to function. Diabetics are dependent on insulin. People with OAB depend on Myrbetric. So, being dependent on a medication is nothing to be ashamed of, or afraid of. Renee, who's a pharmacist, @faithwalker007 has explained the differences very well, and I've found her to be a great resource on this whole issue.

So, where are you in the titration process? I'll be interested in hearing how it goes for you.

Jim

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To not require pre-approval by your insurance providers for your clonazepam especially since you’re taking MS Contin before now would be called a miracle in pharmacy circles. Lol
It’s been required in Wyoming-serviced insurance providers and Medicaid for at least 5 years of not longer. In fact I had to have my Ambien pre-authorized many years ago and I wasn’t even on opioids at the time. Us pharmacists are actually more leery of benzodiazepines than almost any other class of drug other than MAO inhibitors.
I stopped by Ambien almost as quick as I started it. I’m more content to not sleep at all than deal with the side effects that crap gives me.
Anyhoo— the reason you see the crackdown on benzodiazepines especially with poly-pharmacy and co-medication with opioids is the high risk of sedation, increased comorbidity and mortality rates of accidental overdosing or death due to respiratory depression and suicide.
The alarming increase in suicide and depression due to Covid-19 has insurance companies and providers hypervigilant to be on the offense instead of landing in court with malpractice suits.

katyripp1967 | @katyripp1967 | Oct 24, 2020

In reply to @helenfrances "A noticeable effect of taking Clonazapam is forgetting, repeating yourself ... as evidenced by my posts...." + (show)

I forget things all the time..names of things and where I put stuff. It's scaring the hell out of me.

Jim, Volunteer Mentor | @jimhd | Oct 25, 2020

In reply to @faithwalker007 "To not require pre-approval by your insurance providers for your clonazepam especially since you’re taking MS..." + (show)

@katyripp1967 @faithwalker007

I have had a lifelong problem with memory, so it's hard to know if the medication is making it worse.

I think that accidental overdose is the least of my worries, because I tend to be OCD in the way I dispense my meds. The bottles are lined up in a specific order. Starting at the left end, I have the pills to take in the morning, then the pills that I take both at bedtime and in the morning, then the ones I take only at bedtime. I have to have order. Organization is very important to me.

From time to time I do an online drug interaction check, so I know what I need to be aware of, and possible side effects to watch for. All of my doctors have in front of them a current list of medications, so they warn me to be careful about taking only the prescribed dose.

I'm rambling - I'm tired and need to go to sleep.

Jim

Faithwalker007 (Renee) | @faithwalker007 | Oct 25, 2020

In reply to @jimhd "@katyripp1967 @faithwalker007 I have had a lifelong problem with memory, so it's hard to know if..." + (show)

I’m glad you don’t have to worry about overdosing but insurance companies don’t see it that way. Sorry.

Ellen | @helenfrances | Oct 25, 2020

In reply to @jimhd "@katyripp1967 @faithwalker007 I have had a lifelong problem with memory, so it's hard to know if..." + (show)

Jim,
I found a black (fake)leather pill case with a snap.
It that really helps me organize a week of meds.

There is a separate plastic case with a sliding top
labeled for each day of the week.
Each day’s plastic ‘box’ has a sliding top.
No wondering if I took too many or not enough med.

I fill the case for the week and refill it the beginning of the next week.

You can probably find one that works for you at a pharmacy or on line?

There is also one for an entire month, but I preferred the smaller case with the faux leather snap that fits in my purse.
Good luck.

Ellen | @helenfrances | Oct 25, 2020

In reply to @katyripp1967 "I forget things all the time..names of things and where I put stuff. It's scaring the..." + (show)

Please see a doctor. They can prescribe a “memory drug” ( such as Aricept). I will ask my husband to verify if my memory loss from Clon Is less noticeable since I have been taking the new memory “enhancer”.

I do think the brain can regenerate, but I have to do more research.
My doctor prescribed a half and then a whole (Aricept).. gave me a monthly schedule of how to take it.

Ellen | @helenfrances | Oct 25, 2020

In reply to @jimhd "@katyripp1967 @faithwalker007 I have had a lifelong problem with memory, so it's hard to know if..." + (show)

Ok, so you already are organized!

Erika | @erikas | Oct 26, 2020

In reply to @katyripp1967 "I forget things all the time..names of things and where I put stuff. It's scaring the..." + (show)

@katyripp1967 I agree with @helenfrances. Please see your provider regarding your memory issues.

sears | @sears | Oct 27, 2020

In reply to @bustrbrwn22 "@jimhd @sears. Weird. I was just typing in a response and received a call from the..." + (show)

Whatever happened with your pain clinic experience if you don’t mind sharing?

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