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.

Clonazapam has affected my memory. My new neurologist told me to stop taking it! I had taken it for a for cervical dystonia of the neck(head turning).
I was prescribed this drug(from another doctor) in addition to receiving Botox injections in the muscle which pulled my neck/head. He said the injections had to be supplemented by this drug!
I did not know that Clonazapam causes dependency and mood changes. Clonazapam affects memory!

The new neurologist outlined a plan of titration from this drug.
I am slowly decreasing the dosage each week. This has been a real challenge. I had what seemed like a seizure when I went to a lower dose.

I called the prescriber and he said that he was “no longer”my doctor.

And.. the new doctor, a neurologist, is on vacation... with no back up except a message to go to the hospital in an emergency.
1.I do not understand how a initial doctor can say “You are no longer my patient.”( especially when you are having tremors)
2. I do not understand why there was no back up doctor for the one who went on vacation. He is still on vacation? I left a message on his answering machine. My husband called him: still no answer.

I did not want to go to the ER and increased my dose back a step to one whole(2 halves) instead of 1/2 a pill.

Our family physician told my husband to make an appointment with him when I have few pills left. Thank God for him.
I am still taking the lowest dose and will try 1/2 per day again.
Has anyone else gone through titration from a pharmaceutical that causes dependence?
I ask for your prayers. Each day is getting better, except for a mild ... depression ? and headache

REPLY
@helenfrances

Clonazapam has affected my memory. My new neurologist told me to stop taking it! I had taken it for a for cervical dystonia of the neck(head turning).
I was prescribed this drug(from another doctor) in addition to receiving Botox injections in the muscle which pulled my neck/head. He said the injections had to be supplemented by this drug!
I did not know that Clonazapam causes dependency and mood changes. Clonazapam affects memory!

The new neurologist outlined a plan of titration from this drug.
I am slowly decreasing the dosage each week. This has been a real challenge. I had what seemed like a seizure when I went to a lower dose.

I called the prescriber and he said that he was “no longer”my doctor.

And.. the new doctor, a neurologist, is on vacation... with no back up except a message to go to the hospital in an emergency.
1.I do not understand how a initial doctor can say “You are no longer my patient.”( especially when you are having tremors)
2. I do not understand why there was no back up doctor for the one who went on vacation. He is still on vacation? I left a message on his answering machine. My husband called him: still no answer.

I did not want to go to the ER and increased my dose back a step to one whole(2 halves) instead of 1/2 a pill.

Our family physician told my husband to make an appointment with him when I have few pills left. Thank God for him.
I am still taking the lowest dose and will try 1/2 per day again.
Has anyone else gone through titration from a pharmaceutical that causes dependence?
I ask for your prayers. Each day is getting better, except for a mild ... depression ? and headache

Jump to this post

@helenfrances

From my own experience, and from what I've read from others, tapering has to be done in much smaller increments. Some have said that they cut the pills into eighths, and reduce by an eighth until your body is ready to reduce by another eighth - maybe every 2 or 3 weeks. Maybe you can reduce it by a quarter - everyone is different. But only to cut it in half is way too much for most people. I hope your doctor will understand that you want/need to titrate as slowly as possible.

There are others who have written about how they did it. Maybe you can scroll through the messages and get an idea of how long titration takes. Don't get discouraged if it doesn't happen as quickly as you'd like, and be firm with your doctor if he wants you to do it too fast.

Sometimes, when you step down to the next dosage, you might find that you need to go back up a notch a little longer.

Let us know how it goes. You can help others who are in the same position.

Jim

REPLY

@helenfrances, I am in total agreement with @jimhd regarding his recommendations. I personally have taken Clonazapam 1 mg for well over 20 years and now at nearly 69 have been considering titrating off this drug. There have been so many posts regarding how important titration is for this drug as well as many others. The bottom line for me is the following:
1. Consider how long you have been on this drug. This should give each one of us an understanding that it should be a slow process.
2. Regarding Clonazapam, I believe you can get 1/2 mg. pills. It would be rather easy to cut these into quarters thereby depending on the doze you are taking would help immensely in titrating down.
3. There have been several that bring up the Ashton method of titration or tapering. This method recommends no more than a 5-10% drop any any time and after a time (say a month) drop down again. Your body will tell you if that is to fast for you. If needed, go halfway back or even all the way back where you last dropped down and stay till things level off.
4. This will be different for everyone. I believe each of us are the best advocates for ourselves. Listen to what your body is telling you. If being on 1 mg. of Clonazapam for over 20 years as I have I would expect that it could possibly take 6-9 months.

Everything I've read on Mayo & elsewhere says if we do this slowly we will be successful.

If I decide to pursue this I will keep you posted on how it goes for me.
Jim@thankful

REPLY
@thankful

@helenfrances, I am in total agreement with @jimhd regarding his recommendations. I personally have taken Clonazapam 1 mg for well over 20 years and now at nearly 69 have been considering titrating off this drug. There have been so many posts regarding how important titration is for this drug as well as many others. The bottom line for me is the following:
1. Consider how long you have been on this drug. This should give each one of us an understanding that it should be a slow process.
2. Regarding Clonazapam, I believe you can get 1/2 mg. pills. It would be rather easy to cut these into quarters thereby depending on the doze you are taking would help immensely in titrating down.
3. There have been several that bring up the Ashton method of titration or tapering. This method recommends no more than a 5-10% drop any any time and after a time (say a month) drop down again. Your body will tell you if that is to fast for you. If needed, go halfway back or even all the way back where you last dropped down and stay till things level off.
4. This will be different for everyone. I believe each of us are the best advocates for ourselves. Listen to what your body is telling you. If being on 1 mg. of Clonazapam for over 20 years as I have I would expect that it could possibly take 6-9 months.

Everything I've read on Mayo & elsewhere says if we do this slowly we will be successful.

If I decide to pursue this I will keep you posted on how it goes for me.
Jim@thankful

Jump to this post

Please never ever try to come off a benzodiazepine on your own. Please do this WITH a provider’s help. They can give you medication to help with the withdrawal and decrease your dosage gradually.
If you attempt this on your own, it can cause a host of physical and mental consequences which you most likely will not be prepared for.

REPLY
@helenfrances

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?!

Jump to this post

I read an article written by a woman who had been prescribed Clonazapam. She sued her doctor and won. She asked for a few thousand dollars. A small sum for memory impairment.
Her letter is online. (last name Lake)

REPLY
@thankful

@helenfrances, I am in total agreement with @jimhd regarding his recommendations. I personally have taken Clonazapam 1 mg for well over 20 years and now at nearly 69 have been considering titrating off this drug. There have been so many posts regarding how important titration is for this drug as well as many others. The bottom line for me is the following:
1. Consider how long you have been on this drug. This should give each one of us an understanding that it should be a slow process.
2. Regarding Clonazapam, I believe you can get 1/2 mg. pills. It would be rather easy to cut these into quarters thereby depending on the doze you are taking would help immensely in titrating down.
3. There have been several that bring up the Ashton method of titration or tapering. This method recommends no more than a 5-10% drop any any time and after a time (say a month) drop down again. Your body will tell you if that is to fast for you. If needed, go halfway back or even all the way back where you last dropped down and stay till things level off.
4. This will be different for everyone. I believe each of us are the best advocates for ourselves. Listen to what your body is telling you. If being on 1 mg. of Clonazapam for over 20 years as I have I would expect that it could possibly take 6-9 months.

Everything I've read on Mayo & elsewhere says if we do this slowly we will be successful.

If I decide to pursue this I will keep you posted on how it goes for me.
Jim@thankful

Jump to this post

Thank you... very much!

REPLY
@faithwalker007

Please never ever try to come off a benzodiazepine on your own. Please do this WITH a provider’s help. They can give you medication to help with the withdrawal and decrease your dosage gradually.
If you attempt this on your own, it can cause a host of physical and mental consequences which you most likely will not be prepared for.

Jump to this post

@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.

REPLY
@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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Your doctor should be reported to your state board of pharmacy and your state medical board.

REPLY
@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.

Jump to this post

@cb772

I agree with Renee @faithwalker007 . That was absolutely an incompetent act. If you would get a copy of the note from that interaction, to which you have a legal right of access, it would strengthen your complaint. Even if it's not something you particularly want to do, you owe it to yourself and to all of the other victims of the doctor's incompetence, to do all you can to expose her.

Jim

REPLY
@faithwalker007

Please never ever try to come off a benzodiazepine on your own. Please do this WITH a provider’s help. They can give you medication to help with the withdrawal and decrease your dosage gradually.
If you attempt this on your own, it can cause a host of physical and mental consequences which you most likely will not be prepared for.

Jump to this post

@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

REPLY
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