Tapering off clonazepam (Klonopin, Rivotril)

Posted by mmussak @mmussak, Dec 19, 2018

Hi my name is Mary and I am a first time user of ever using a discussion blog online but have felt in my heart I need some advice and help with an issue I am having. My dr I have seen for many years moved out of state and referred me to another phychiatrist within his office. At the time of his moving away he had me weaning off clorazapam slowly and doing it as slow to not make it not so difficult as you all know , and I was doing well at it until I was having extreme chest pain and they put me in the hospital for 2 days to check to make sure it wasn’t my heart, with all this happening I knew it was the weaning off the meds that was causing it so i went back up in dosage and it all went away again, and I was almost off it…My old dr started me on this med 27 years ago and I had no idea what it was but my body anxiety was shutting down my body and it helped it all go away so i didnt question it, well not until I went to school for nursing did I find out what it was all about. He put me on .5 mg three times a day and that stayed that way for 27 years not knowing what It does later in years, so I asked my dr to help me with the weaning off it, so our weaning process was as follows: Take .5 in a.m. ,25 afternoon and ,5 evening dose for 2 weeks then cut morning dose to .25 afternoon to .25 and evening .5 for 2 weeks then finally .25 three times a day for 6 weeks and then starting the last of the wean at this point the same as we did the first .25 till i was off. My new dr went from .50 3 times daily to .25 two times a day starting right away to get off it, that is over 1.0 mg a day off it all in one day and forward , I am already sad and crying because I dont know what to do, I have been there and I know how hard it was just to get off the way my old dr did slowly…..anyone out there that can help me with what to do I am so scared and I don’t think she knows how extremely hard it is to get off this stupid stuff or that I really do want to do it, but please make it as painless as possible if there is such a thing with these meds. At 56 I didnt think I would have to go through menapause and this hell(sorry about the word but so true) all at once…at times I think it would be easier to just get cancer or something and die. Sorry but its true if you have been there you will understand. PLease help me!!!

@mmussak– Mary, my name is Jim. Sounds like you are having a difficult time and I'm sorry to hear that.
What was it that made you decide after 27 years that you needed to get off it? I only ask that question because it sounded like those years were somewhat problem free at that dose? I have been on 1.0 mg. for over 20 years and as I have said in many of my posts on this subject, this drug allowed me to take back my life. I've never increased or decreased my dose through all these years and I do not even realize I'm on it meaning no side effects as best as I can tell. I've had discussions with my GP it seems every few years in order to satisfy the insurance company I suppose to consider going off it and my answer has always been "If it is doing what I need, why bother"? I used to ask is it doing me harm long term? Will I regret taking this for all these years? The answer was no. I like that phrase, Do no harm! Stay away from those harmful thoughts and fill yourself up with things that bring joy into your heart. Jim @thankful

@thankful

@mmussak– Mary, my name is Jim. Sounds like you are having a difficult time and I'm sorry to hear that.
What was it that made you decide after 27 years that you needed to get off it? I only ask that question because it sounded like those years were somewhat problem free at that dose? I have been on 1.0 mg. for over 20 years and as I have said in many of my posts on this subject, this drug allowed me to take back my life. I've never increased or decreased my dose through all these years and I do not even realize I'm on it meaning no side effects as best as I can tell. I've had discussions with my GP it seems every few years in order to satisfy the insurance company I suppose to consider going off it and my answer has always been "If it is doing what I need, why bother"? I used to ask is it doing me harm long term? Will I regret taking this for all these years? The answer was no. I like that phrase, Do no harm! Stay away from those harmful thoughts and fill yourself up with things that bring joy into your heart. Jim @thankful

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Hi Jim…thank you for your reply it makes so much sense that yes for 27 years everything has been just fine…I was me again. The reason I want to wean off it is because I am a nurse and had a seminar about 1 year ago and there is evidence now that being on these benzo's they are finding causes dementia, and I have been a manger of a dementia unit for 3 years and trust me if you work with it you NEVER want to live that life, Its really scarry to think that you could end up that way and have to be that way so I wanted to get off it but after reading your post I think that if I can live in peace and good life then when i am older and it happens to me at least I lived a good life while I still could and do things that I otherwise would have to go through this miserable stuff for who knows how long or if myself will ever come back that I may have to live with the withdrawls for the rest of my life…which is worst ? I thank you dearly for your response for it really got to my thinking why not have say 70 great years and then possibly get dementia due to it or live from now to end of life miserable and still get the disease due to taking it for so many years….you are very wise and have no idea how you have opened my eyes to what makes sense….I cant thank you enough!!! You already have made my day better just by your wisdom, please keep helping people for you really do have a great outlook on this!!! Thank you,thank you~~ Mary

@mmussak

Hi Jim…thank you for your reply it makes so much sense that yes for 27 years everything has been just fine…I was me again. The reason I want to wean off it is because I am a nurse and had a seminar about 1 year ago and there is evidence now that being on these benzo's they are finding causes dementia, and I have been a manger of a dementia unit for 3 years and trust me if you work with it you NEVER want to live that life, Its really scarry to think that you could end up that way and have to be that way so I wanted to get off it but after reading your post I think that if I can live in peace and good life then when i am older and it happens to me at least I lived a good life while I still could and do things that I otherwise would have to go through this miserable stuff for who knows how long or if myself will ever come back that I may have to live with the withdrawls for the rest of my life…which is worst ? I thank you dearly for your response for it really got to my thinking why not have say 70 great years and then possibly get dementia due to it or live from now to end of life miserable and still get the disease due to taking it for so many years….you are very wise and have no idea how you have opened my eyes to what makes sense….I cant thank you enough!!! You already have made my day better just by your wisdom, please keep helping people for you really do have a great outlook on this!!! Thank you,thank you~~ Mary

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@mmussak– Speaking from my heart is what I know and this morning when I opened Connect your post was the 1st I saw.
I knew I had to speak into your situation. Thank you for your kind words of assurance! Have a blessed Christmas season.

@thankful

@mmussak– Speaking from my heart is what I know and this morning when I opened Connect your post was the 1st I saw.
I knew I had to speak into your situation. Thank you for your kind words of assurance! Have a blessed Christmas season.

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you are very welcome.Im here for you.May blessings be showered upon you.We will get there(free from benzodiazepine hell)!Please message me any time,and I will there be there for you.

@thankful

@mmussak– Mary, my name is Jim. Sounds like you are having a difficult time and I'm sorry to hear that.
What was it that made you decide after 27 years that you needed to get off it? I only ask that question because it sounded like those years were somewhat problem free at that dose? I have been on 1.0 mg. for over 20 years and as I have said in many of my posts on this subject, this drug allowed me to take back my life. I've never increased or decreased my dose through all these years and I do not even realize I'm on it meaning no side effects as best as I can tell. I've had discussions with my GP it seems every few years in order to satisfy the insurance company I suppose to consider going off it and my answer has always been "If it is doing what I need, why bother"? I used to ask is it doing me harm long term? Will I regret taking this for all these years? The answer was no. I like that phrase, Do no harm! Stay away from those harmful thoughts and fill yourself up with things that bring joy into your heart. Jim @thankful

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Oh my word! I started loosing cognitive function,and my body was demanding more Klonopin.Other side effects continued to worsen.More panic attacks,anxiety, fear,and worry.This medication was never put on the market for it to be taken long term.Oops ,I found out after being prescribed many years ago.My Throid is failing,pancreas and problems with my liver.All side effects of the benzodiazepine. I want quality of life.Of and the biggest kicker is the suicidal thoughts.At my lowest,I committed suicide.This incredibly difficult to say nor admit.And as a result of my suicide,I suffered two heart attacks back to back.The doctors said my heart stopped twice.If it works for you,that's wonderful,and I truly mean that.I am forced by my health to continue to taper a couple more months.Blessings to you!

@harleneq

Oh my word! I started loosing cognitive function,and my body was demanding more Klonopin.Other side effects continued to worsen.More panic attacks,anxiety, fear,and worry.This medication was never put on the market for it to be taken long term.Oops ,I found out after being prescribed many years ago.My Throid is failing,pancreas and problems with my liver.All side effects of the benzodiazepine. I want quality of life.Of and the biggest kicker is the suicidal thoughts.At my lowest,I committed suicide.This incredibly difficult to say nor admit.And as a result of my suicide,I suffered two heart attacks back to back.The doctors said my heart stopped twice.If it works for you,that's wonderful,and I truly mean that.I am forced by my health to continue to taper a couple more months.Blessings to you!

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Hi, @harleneq – thanks for sharing your story with the clonazepam (Klonopin) taper. Sounds terribly difficult, especially the suicidal thoughts that led to a suicide attempt, and also the two heart attacks.

You may also want to check out the Connect Heart & Blood Health group, https://connect.mayoclinic.org/group/heart-blood-vessel-conditions, due to your heart history.

When you finish your clonazepam (Klonopin) taper, will your doctor be putting you on other medications instead? How are your issues with the thyroid, pancreas and liver being treated?

@lisalucier

Hi, @harleneq – thanks for sharing your story with the clonazepam (Klonopin) taper. Sounds terribly difficult, especially the suicidal thoughts that led to a suicide attempt, and also the two heart attacks.

You may also want to check out the Connect Heart & Blood Health group, https://connect.mayoclinic.org/group/heart-blood-vessel-conditions, due to your heart history.

When you finish your clonazepam (Klonopin) taper, will your doctor be putting you on other medications instead? How are your issues with the thyroid, pancreas and liver being treated?

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I’be been on clonazepam for over 25 years and have no interest in not taking it. I freely admit that I am not distracted by having any medical training, but have had experience with a lifetime of dysthymia and anxiety, and will gladly accept whatever intercession which may be available. I would take the medication. Dementia either occurs or it doesn’t.

@elwooodsdad– Have you talked to your doctor about switching up medicines? Maybe adding another anti-depressant? I take both Zoloft and Welbutrin. Welbutrin took me from the edge to enjoying life, most of the time.

@harleneq

Oh my word! I started loosing cognitive function,and my body was demanding more Klonopin.Other side effects continued to worsen.More panic attacks,anxiety, fear,and worry.This medication was never put on the market for it to be taken long term.Oops ,I found out after being prescribed many years ago.My Throid is failing,pancreas and problems with my liver.All side effects of the benzodiazepine. I want quality of life.Of and the biggest kicker is the suicidal thoughts.At my lowest,I committed suicide.This incredibly difficult to say nor admit.And as a result of my suicide,I suffered two heart attacks back to back.The doctors said my heart stopped twice.If it works for you,that's wonderful,and I truly mean that.I am forced by my health to continue to taper a couple more months.Blessings to you!

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What was your klonopin dose?

@terri672

What was your klonopin dose?

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1mg. 3 times daily

We switched from duloxetine about October to trintillix, but we are having a talk this afternoon. I have begun to take the trintillix right before bed, and I find the side effects have been minimized nearly completely. Trintillix has a long half life, so perhaps letting it ruminate while I sleep (and now I can) is a better way to go. My prior practice was to take it first thing in the morning.

@harleneq

Oh my word! I started loosing cognitive function,and my body was demanding more Klonopin.Other side effects continued to worsen.More panic attacks,anxiety, fear,and worry.This medication was never put on the market for it to be taken long term.Oops ,I found out after being prescribed many years ago.My Throid is failing,pancreas and problems with my liver.All side effects of the benzodiazepine. I want quality of life.Of and the biggest kicker is the suicidal thoughts.At my lowest,I committed suicide.This incredibly difficult to say nor admit.And as a result of my suicide,I suffered two heart attacks back to back.The doctors said my heart stopped twice.If it works for you,that's wonderful,and I truly mean that.I am forced by my health to continue to taper a couple more months.Blessings to you!

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So sorry to hear….do u take antidepressants with it?? I have bad anxiety that leads to depression so have always been on both meds …remember anything can make your thyroid problems and other issues.. .nothing can say its caused by the meds…that's a drs guess so please dont put harshness on yourself for taking it…I'm sorry u had such a bad reaction to it…

@thankful

@mmussak– Speaking from my heart is what I know and this morning when I opened Connect your post was the 1st I saw.
I knew I had to speak into your situation. Thank you for your kind words of assurance! Have a blessed Christmas season.

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Hi jim… hope u had a great holiday season…just wanted to let u know I see my dr on 10th and am going to say what you have said…pray she will understand it!!! A bit nervous what she will say

@merpreb

@elwooodsdad– Have you talked to your doctor about switching up medicines? Maybe adding another anti-depressant? I take both Zoloft and Welbutrin. Welbutrin took me from the edge to enjoying life, most of the time.

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I am switching from Trintillix to Prozac with the assistance of Clonazepam. Worst time of my life. I understand why people throw up their hands and quit trying. Insomnia, flu like symptoms, having to over-subscribe to companion drugs just to get by. Suicidal ideation is frightening and sometimes appealing, but not an option for me. I have a good psychiatrist, and a wife who is my greatest gift. This experience cannot be described in words. It just has to be endured, like any other torture. I am miserable, but know in my soul that there is light at the end of this very dark tunnel…

@mmussak

Hi Jim…thank you for your reply it makes so much sense that yes for 27 years everything has been just fine…I was me again. The reason I want to wean off it is because I am a nurse and had a seminar about 1 year ago and there is evidence now that being on these benzo's they are finding causes dementia, and I have been a manger of a dementia unit for 3 years and trust me if you work with it you NEVER want to live that life, Its really scarry to think that you could end up that way and have to be that way so I wanted to get off it but after reading your post I think that if I can live in peace and good life then when i am older and it happens to me at least I lived a good life while I still could and do things that I otherwise would have to go through this miserable stuff for who knows how long or if myself will ever come back that I may have to live with the withdrawls for the rest of my life…which is worst ? I thank you dearly for your response for it really got to my thinking why not have say 70 great years and then possibly get dementia due to it or live from now to end of life miserable and still get the disease due to taking it for so many years….you are very wise and have no idea how you have opened my eyes to what makes sense….I cant thank you enough!!! You already have made my day better just by your wisdom, please keep helping people for you really do have a great outlook on this!!! Thank you,thank you~~ Mary

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Hi, Jim is right. Living your best life is the goal of any treatment. If you read the studies done on benzos and dementia you will find that at this time, they don't have any concrete evidence that they cause dementia. There is no direct link because there is a missing piece about the question of whether people started on the benzos later in life because they were already in the beginning stages of dementia. For example, ten years ago my mom started having anxiety issues at age 73. Her doctor put her on xanax .25 3 times a day. This is a very low dose and she usually only took it twice a day. In hindsight, the anxiety was being caused by the onset of dementia/alzheimers and the xanax was added to combat those symptoms. At age 73, the xanax did not cause the dementia. The studies they are currently referring too are having the same difficulty…what came first the chicken or the egg? In the future, they may prove that there is a connection to some of these medications ie: benzos, statins, beta blockers, but for now there is a lot of speculation. I hope you ultimately live your best life in this moment. I have been taking Klonopin for about 15 years 1 mg at bedtime. It has really helped and I too have occasionally tried a slow wean thinking that being off of them is better for me. I always end up back on my 1 mg and am comfortable there, no side effect and no panic attacks at night.

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