Is it really necessary?

Hi,

 

I've been on 2mg Clonazepam for 15 years now. The thing is: my life wasn't great before I started it and it saved me. I've accomplished so much during these 15 years in all aspects of my life (professional, hobbies, relationships, self-growth) and never had any of the side effects I hear people talking about all the time: never felt sedated, emotionless, depersonalised etc etc etc. I never felt the urge to take more than 2 mg either. Always felt normal, happy, accomplished, purposeful, buoyant, positive, productive, fulfilled.

 

Whenever I try to reduce it I feel like I'm getting back to the way things were before I started it, 15 years ago. Anxiety creeps in, I struggle to concentrate, my memory fails, I feel lethargic and mildly depressed.

 

Several doctors have told me, upon hearing this story, that I shouldn't worry and just stick to the 2mg dose as it's the perfect dose that works for me, no side effects and no desire to increase.

 

All of this makes me question: is it really necessary to stop it?

Hello pinguim, welcome to BenzoBuddies,

 

We are glad you are here!  Your question is a good one but I don't think there is a hard and fast answer to it.  The longer I am at BB, the more I see how varied the experiences are of people with benzos.  I was a long-time clonazepam user also and I had been in tolerance for quite a while, meaning that the dose I was on was no longer working as it should and was having acting opposite to how I wanted it to i.e. anxiety.  It did take quite a while for things to get to that point for me, though.  Some of our members have been cut off my their prescribers in an an increasing trend for doctor to quit prescribing benzos and that was true in my case also.

 

Should you decide you want to taper off clonazepam, we can support you along the way.  We encourage a slow taper of no more than a 5-10% reduction of your dose every two weeks or so.  This is the link to our Taper Support board where you can find information and help:

 

Planning Your Withdrawal (Taper Plans)

 

It would be helpful for you to read The Ashton Manual, the source we use for benzo withdrawl:

 

The Ashton Manual

 

It is good you are asking questions.  Please look around here and see what is available and if you need help, let us know.

 

Again, welcome,

 

Kate

Hello...welcome. I felt compelled to respond. I am tapering off  .5 Ativan after using it for 35 years. I, too had no issue with it until about 3 years ago. I have owned businesses and teach at the college level. I went back for my Master's degree.  I used it for sleep...I was fine. About 3 years ago I noticed I was having some memory issues. I also started having word recall problems and it started to become difficult to concentrate on reading. I would stare at a page and literally had problems going from sentence to sentence. In addition my only prescribing dr was getting ready to retire AND I noticed on his office notes that he would write that we spent the whole visit a few times talking about Ativan. WE DID NOT. In fact we never talked about Ativan. He basically lied and I am sure it was to cover his ass. I was shocked. I started to read about Ativan and noticed memory issues were talked about. Well I decided in Sept 2019 to just cut in half. I only did that for three weeks because of heart palpitations, blood pressure, dizziness and as a daily swimmer, I couldn't get in the pool... I thought I was going to drown. I quickly got to my regular dose, realized there was a problem with this drug. I started my taper March 2020.  If someone would have told me 20 years ago about this drug I would have started at that time tapering. I know I would have. I just didn't know. I also think absolutely that it will be harder to get scripts in the coming years. I am doing a very very slow taper. I guess just think about it. You will make the right decision, I just wanted to add what I would have done had I known about this drug 15 years ago. Hope this helps in some way.

I've been on 2mg Clonazepam for 15 years now. The thing is: my life wasn't great before I started it and it saved me.

...

I never felt the urge to take more than 2 mg either. Always felt normal, happy, accomplished, purposeful, buoyant, positive, productive, fulfilled.

 

Whenever I try to reduce it I feel like I'm getting back to the way things were before I started it, 15 years ago.

...

 

pinguim - If it was working for you, and you never had a problem with it, why did you try to reduce it?

 

 

 

 

---

I only started to think about reducing when I started to have memory issues and I started researching the drug..heck I always thought it was a sleeping pill. I didn't even know it was a benzodiazepine. When I tried to cut in half a .5 pill and got the reaction I did..I thought "holy shit" my body is dependent on this. For three weeks I was sick and it was because of reducing the Ativan. After I went back up to my dose things got better. I never reached tolerance, nor went up in dose and I never wanted to..so I felt it was best to start reducing when I was in the best shape. And I thought the pandemic would help, because I had no social activities whatsover!!I started reading how some drs were just refusing to prescribe and refill this med. I knew my dr was retiring and I didn't want to be in a situation that someone wouldn't prescribe it. My taper has been fine, so far. I am down to .22 with the help of MMJ. My thinking is clearer. My anxiety is worse, but I know its from withdrawal. I can deal with it  at this point. I think when I started researching this class of drug, I just was shocked and knew I needed to come off. Hope this helps.

I should never have come off of benzos. They helped my physical symptoms.

It is completely your choice.

Lots of ppl are in them for decades without problems.

 

pinguim - If it was working for you, and you never had a problem with it, why did you try to reduce it?

 

 

 

 

---

 

Because of some stories I started to hear about how it can be potentially bad on the long term. I'm still questioning whether or not it's worth the effort. Was just talking to my wife about how the best 15 years of my adult life were the ones during which I was on those 2mg of Rivotril. Endless energy, multiple hobbies, plenty of self-confidence, several social circles, career accomplishments living in an English-speaking country and not being a native speaker, non-stop learning of pretty much any subject that would pick my interest... and NONE of the side effects people so often talk about (and no desire/need whatsoever to increase the dosage).

 

I'm now on my 13th month of tapering, 1mg/day, and I'm just not the same person. Lethargic, anxious, having memory and concentration issues, insecure, not really keen to learn/try new stuff, spending a lot of time just mindlessly watching TV after work... definitely not myself! Makes me wonder whether some people might actually just benefit from benzos and have no issues at all even in the long term.

Hello...welcome. I felt compelled to respond. I am tapering off  .5 Ativan after using it for 35 years. I, too had no issue with it until about 3 years ago. I have owned businesses and teach at the college level. I went back for my Master's degree.  I used it for sleep...I was fine. About 3 years ago I noticed I was having some memory issues. I also started having word recall problems and it started to become difficult to concentrate on reading. I would stare at a page and literally had problems going from sentence to sentence. In addition my only prescribing dr was getting ready to retire AND I noticed on his office notes that he would write that we spent the whole visit a few times talking about Ativan. WE DID NOT. In fact we never talked about Ativan. He basically lied and I am sure it was to cover his ass. I was shocked. I started to read about Ativan and noticed memory issues were talked about. Well I decided in Sept 2019 to just cut in half. I only did that for three weeks because of heart palpitations, blood pressure, dizziness and as a daily swimmer, I couldn't get in the pool... I thought I was going to drown. I quickly got to my regular dose, realized there was a problem with this drug. I started my taper March 2020.  If someone would have told me 20 years ago about this drug I would have started at that time tapering. I know I would have. I just didn't know. I also think absolutely that it will be harder to get scripts in the coming years. I am doing a very very slow taper. I guess just think about it. You will make the right decision, I just wanted to add what I would have done had I known about this drug 15 years ago. Hope this helps in some way.

 

Thanks a lot for sharing, really appreciate you taking the time to write this post. Definitely got me thinking.

Dear Penquin,

 

Just a word from a very long term Clonazepam user. I used .25 and then .50 daily for sleep from my late 40’s and still on now and just turned 70. I would give everything I own

and then some to have realized I needed to get off and done the work a long time ago. Eventually your receptors all over your body are reprogrammed and simply burn out. The difficulties I now experience are too awful to list here. I’m a Mom, wife and Grandma and my family is devastated,  I feel I’ve let them down to say nothing of myself.  I experience daily withdrawal symptoms and am bedridden.  My future is very grim and I have a strong hunch there is more cancer lurking and I already had breast cancer. And this is when I had planned to enjoy a long retirement since other than benzos I had good longevity genes. My Dad will soon be 97.

 

This is just to let you know that it can work great for years and then it doesn’t and that can be a very sad scenario. 

 

While your getting off will be tremendously difficult, if someone had told me years ago what I would be facing down the road, I think I would have tried to save my life before it was too late. All I was told was I might need to increase the dose not that it would be life threatening.

 

There will be sacrifices  and it will change you but I can see that had I done it years ago, it would have been quite doable even for us sensitive natured persons.

 

If you were one of my sons and I know what I know now, I would do everything in my power to persuade them to taper off and endure the pain before they end up years later wishing they had.

 

So please realize the situation will change over time. A body can only take so much neurotoxicity IMO.

 

This is to strongly encourage you, not scare you. I hope it helps.

 

Sincerely Storm (aka Gramma V)

Dear Penquin,

 

Just a word from a very long term Clonazepam user. I used .25 and then .50 daily for sleep from my late 40’s and still on now and just turned 70. I would give everything I own

and then some to have realized I needed to get off and done the work a long time ago. Eventually your receptors all over your body are reprogrammed and simply burn out. The difficulties I now experience are too awful to list here. I’m a Mom, wife and Grandma and my family is devastated,  I feel I’ve let them down to say nothing of myself.  I experience daily withdrawal symptoms and am bedridden.  My future is very grim and I have a strong hunch there is more cancer lurking and I already had breast cancer. And this is when I had planned to enjoy a long retirement since other than benzos I had good longevity genes. My Dad will soon be 97.

 

This is just to let you know that it can work great for years and then it doesn’t and that can be a very sad scenario. 

 

While your getting off will be tremendously difficult, if someone had told me years ago what I would be facing down the road, I think I would have tried to save my life before it was too late. All I was told was I might need to increase the dose not that it would be life threatening.

 

There will be sacrifices  and it will change you but I can see that had I done it years ago, it would have been quite doable even for us sensitive natured persons.

 

If you were one of my sons and I know what I know now, I would do everything in my power to persuade them to taper off and endure the pain before they end up years later wishing they had.

 

So please realize the situation will change over time. A body can only take so much neurotoxicity IMO.

 

This is to strongly encourage you, not scare you. I hope it helps.

 

Sincerely Storm (aka Gramma V)

 

 

Thank you very much Storm, really appreciate you taking the time to reply. Certainly gives me a lot to think about.

All of this makes me question: is it really necessary to stop it?

 

 

It is if you were misdiagnosed with GAD and Panic Disorder, and should never been put on it. My psychiatrist never looked at my medical history, threw Klonopin at me, and said it would be easy to stop when I no longer needed it. I'm autistic, the benzo made it worse, I was degrading to childhood stim behavior, lost my executive functioning, was not myself. At the time I had hypomagnesemia, and was awaiting an Orphan Drug from the UK (I live in the US), that the FDA greenlighted my importation of because my condition was serious and life-threatening, and there were no alternatives in the US. Psych KNEW this.

 

Saw my Endocrinologist, and she was absolutely flabbergasted at what the Psych did. She pointed out to me that the periods of anxiety I would have every 3 weeks, culminating in a severe Panic Attack that would have me ending up in the ER where they would find my Magnesium was low and give me infusions, were a result of hypomagnesemia. It's a well-known side effect, and the Psych should have KNOWN that! I felt great for 2, maybe 3, weeks after the infusion, and the cycle would repeat itself. The Klonopin did nothing but ruin my life.

 

4 Years of hypomagnesemia, 8 months process getting Orphan Drug approval from FDA, and provided by small UK research facility. Only 44 days of treatment with experimental drug, hypomagnesemia ended. Thought I'd get my life back, until I tried the bad advice of stopping Klonopin. Switched Psych providers, got lucky and found a benzo-wise Nurse Practitioner who said my original provider gave me very bad advice regarding stopping the Klonopin. I've met others on BB who were given benzo's for conditions benzo's weren't meant to treat, or like me, misdiagnosed with a disorder they never had.

 

So here I am losing more years of my life, tapering has been hell. The only positive is that I am almost at the half-way point, and my Autism has improved. Just crossing over from Klonopin to the less potent Valium improved my autism.

 

For me, it is absolutely necessary to stop it. It's poison as far as I'm concerned. My taper had all been physical side-effects, almost no mental. I've had rare rebound anxiety (typically when dealing with stress). Fatigue, inadequate sleep, chills (I'm cold most of the earlier half of the day), struggle to eat, restricted to low histamine diet. I feel as though I'm living in Hell.

 

For some of us it is necessary to stop benzos, for others, benzos may be the only solution to their condition. And others will tell you that benzos turned on them, after years of helping, they became tolerant to their effects so they no longer worked, they had adverse reactions, some paradoxical. They quit working, or they were in tolerance withdrawal. Benzos can turn on you, cause the very problems they were supposed to fix. Withdrawing off of them will cause rebound effects, so cutting your dose may not mean a return of the original symptoms you took them to treat, or simply the effects of reducing the dosage, which eventually subside for most people.

 

You asked, I see you got varied answers. Ultimately it's up to you whether you want to taper or stay on them. No one can make that decision for you (except a doctor who decides to rapidly taper you, or cuts you off, because the doctor no longer wishes to prescribe them). Hopefully that doesn't happen to you, but BB has many members who had exactly that happen to them, and they truly suffer. I count my lucky stars I'm able to taper at my own pace, and I don't have to fear my NP is going to leave me without. I have great empathy for those forced off by their doctors.

 

 

All of this makes me question: is it really necessary to stop it?

 

 

It is if you were misdiagnosed with GAD and Panic Disorder, and should never been put on it. My psychiatrist never looked at my medical history, threw Klonopin at me, and said it would be easy to stop when I no longer needed it. I'm autistic, the benzo made it worse, I was degrading to childhood stim behavior, lost my executive functioning, was not myself. At the time I had hypomagnesemia, and was awaiting an Orphan Drug from the UK (I live in the US), that the FDA greenlighted my importation of because my condition was serious and life-threatening, and there were no alternatives in the US. Psych KNEW this.

 

Saw my Endocrinologist, and she was absolutely flabbergasted at what the Psych did. She pointed out to me that the periods of anxiety I would have every 3 weeks, culminating in a severe Panic Attack that would have me ending up in the ER where they would find my Magnesium was low and give me infusions, were a result of hypomagnesemia. It's a well-known side effect, and the Psych should have KNOWN that! I felt great for 2, maybe 3, weeks after the infusion, and the cycle would repeat itself. The Klonopin did nothing but ruin my life.

 

4 Years of hypomagnesemia, 8 months process getting Orphan Drug approval from FDA, and provided by small UK research facility. Only 44 days of treatment with experimental drug, hypomagnesemia ended. Thought I'd get my life back, until I tried the bad advice of stopping Klonopin. Switched Psych providers, got lucky and found a benzo-wise Nurse Practitioner who said my original provider gave me very bad advice regarding stopping the Klonopin. I've met others on BB who were given benzo's for conditions benzo's weren't meant to treat, or like me, misdiagnosed with a disorder they never had.

 

So here I am losing more years of my life, tapering has been hell. The only positive is that I am almost at the half-way point, and my Autism has improved. Just crossing over from Klonopin to the less potent Valium improved my autism.

 

For me, it is absolutely necessary to stop it. It's poison as far as I'm concerned. My taper had all been physical side-effects, almost no mental. I've had rare rebound anxiety (typically when dealing with stress). Fatigue, inadequate sleep, chills (I'm cold most of the earlier half of the day), struggle to eat, restricted to low histamine diet. I feel as though I'm living in Hell.

 

For some of us it is necessary to stop benzos, for others, benzos may be the only solution to their condition. And others will tell you that benzos turned on them, after years of helping, they became tolerant to their effects so they no longer worked, they had adverse reactions, some paradoxical. They quit working, or they were in tolerance withdrawal. Benzos can turn on you, cause the very problems they were supposed to fix. Withdrawing off of them will cause rebound effects, so cutting your dose may not mean a return of the original symptoms you took them to treat, or simply the effects of reducing the dosage, which eventually subside for most people.

 

You asked, I see you got varied answers. Ultimately it's up to you whether you want to taper or stay on them. No one can make that decision for you (except a doctor who decides to rapidly taper you, or cuts you off, because the doctor no longer wishes to prescribe them). Hopefully that doesn't happen to you, but BB has many members who had exactly that happen to them, and they truly suffer. I count my lucky stars I'm able to taper at my own pace, and I don't have to fear my NP is going to leave me without. I have great empathy for those forced off by their doctors.

 

Tks for sharing, BenzoLottie, really appreciate it.