Mayo Clinic Connect
Would like information of others who have taken this medication. How long prescribed, how you got off this. Did you have side effects following. Any & all information is greatly appreciated.
Liked by linda
Why are you seeking to remove Klonapin from your prescription protocol? I’ve taken it for years without incident. What problems present to you?
Liked by rucyrious
@rucyrious– I've taken Klonopin/Clonazepam for well over 20+ years. I have remained on the initial dosage of 1 mg. over all those years and have never felt a need to raise it. My only side effects is when I forget to take a dose which feels more like missing my morning Joe. I've had no problems taking it through all these years. As I have written in earlier posts, I believe Klonopin gave me back my life! I was experiencing panic attacks frequently with a few phobias as a result of those attacks. Once on for about 2-3 weeks I finally realized how well things were going. I started back driving on highways again, crossing bridges, flying on airplanes, being able to be in crowds again. There has been a fair amount written on this site about getting off Benzo's and I have been considering that, but even with minimal drops over long periods of time some have had difficulty and then for many going back is never the same. I'm a firm believer that if its not broke, why fix it! I wish you all my best! Jim @thankful
Liked by Jen, Alumna Mentor, Jim, Volunteer Mentor, linda, rucyrious
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Hi and thank so kindly for responding. I was put on this medication in 2003 when all my symptoms started. This was prescribed for leg pain and leg tremors. At this time I was diagnosed with transverse myelitis. Very severe leg pain. I really don’t remember the dosage. If I knew then what I know now, I would have researched this medication plus probably never would have taken it either. Last two years I’ve gone from 4 relapses, 4 sets of steroids infusion, almost died from extreme weight loss. After lowering this medication leg pain has disappeared, noticed over all health improvements. Started feeling better. Never suffered panic or anxiety attacks in my life until I lowered this medication. Read that this medication very well is now the cause of these attacks. Coming off this medication has been a year long battle but I’m doing it. I was completely off of it for 10 days feeling fantastic….myself again until I started MS symptoms again. I had to go back to my last dosage amount that I ended off on which is very frustrating. So I’m searching for others who may have come off this, trying to come off etc.,
I’ve noticed a lot of what this medication has caused me and wondering if others have noticed the same thing.
I am in my late 20s, and I was prescribed klonapin for anxiety, depression, and difficulty falling asleep due to mind racing. At that time I was 18. It definitely helped me sleep, but I had difficulty waking up in the morning (also slept through fire alarms). When I was taking the medication, I noticed that I felt a lack of emotion as if I was numb to things around me. I felt like a robot just coasting through life. At that time I was prescribed one whole pill (can't remember the dosage). My doctor was okay with me weening myself off of the medication, so I cut the pill in half, then eventually into quarters, and eventually I stopped taking it. While weening off I experienced withdrawls and experienced some mood instability, but that was temporary. It's been years since I have had it. So it can be done! Plus I was probably 20 at that point so if I could do it I believe an adult could definitely do it. Naturally I can only speak to my experience, but I feel like I got my zest for life back after coming off of the medication. I now take paroxetine (paxil) which can make you sleepy so it helps with anxiety at night and seems to fill the void.
Obviously Klonapin has huge benefits, and everyone reacts to it differently, so definitely talk to a doctor about coming off of it. But just know it can be done!
Liked by linda, rucyrious
I've been on Clonasapam for 22 years. It was (1mg per day) prescribed by a Neurologist associated with my Rheumatologist I was seeing for Polymyositis, which is a muscle inflammation disease that I was on Prednisone for. (On and off for 15yrs).
I did not investigate the drug until I was accused of appearing as though I was high on something.
I would use the excuse of writing essays for my College classes all through the night and told people that if they'd been awake till 3am and had to be at work at 9am, they'd appear the same.
All of this was true. However, one day I looked at myself in the mirror during midday and saw what others saw. I looked like I was drunk as I don't know what.
After reading about all of the side effects, I tapered on my own to .05mg per day. After a week I appeared normal. However, I would fall down all the time as though I had Polymioditus again, but my Creatin (CPK) levels were perfectly normal, as they still are today.
To make a very long story short, it turns out that my body built up a tolerance to clonazepam and was not working as it had been. Returning to 1mg was not an option as far as I was concerned.
I remained on the .05 per day dosage and discovered strong vitamin supplements (not sure if I can name the company on this site).
In any case, since I had been on prednisone,, along with the Clonazepam, the meds took their toll on me, but the supplements worked! Large dosages of vitamin D3, B12, C, Magnesium, Alpha Lapoic acid, and a few others.
I felt great, however still falling or off balance. I added another product, L-Tryptothan. That did the trick. That converts to HTTP then Seratonin in the system.
I was able to taper to .25mg per day, which I'm still on today.
I stopped the L-Tryptothan a couple of months ago when I heard about Kava Kava, however, I read that over time it could cause kidney problems. Therefore, I'm taking CBD Oil, in capsule form, which after taking for a long time does not cause side effects.
I hope to be off of Clonazepam by the end of this summer. I am grateful to Jesus for providing me with the strength to keep fighting and not giving up.
I am grateful to HIM also because during all the falling, (more requiring E.R visits than not, I've never broken a bone.
Liked by Chris Trout, Volunteer Mentor, rucyrious
@xvxbyq315 Good evening and welcome to Mayo Connect. None of our group of mentors and moderators have medical training. Collectively we have a lot of personal experience to share as appropriate.
You have been on quite a journey. Have you done this on your own? After successfully getting off Clonazepam, what is your personal goal for the next step to being as healthy as possible? What kind of help do you need to get there? Have a restful sleep Connect with us tomorrow. Chris
Liked by Teresa, Volunteer Mentor, rucyrious
Interesting discussion re Clonazepam. I've been taking it for at least 5 or 6 yrs. (5 mgs), taken before bed. Since I've never had any negative reactions to it, I
find it a little surprising to see reaction, especially to such a small mg. Frankly, I'm not sure it effects me one way or the other, as It was prescribed for stress
and I've always assumed it relaxed me before bedtime. Never been sure about this but I do keep taking it and have no addiction to the pill – just makes me
feel more "secure" for some reason. I am 88 yrs old and so far have not fallen. I'm going to check with my internist when I see him if it's necessary for me
to continue taking it and if there are withdrawal issues. I always check with him on the pllls I'm taking when I visit. Since I had takasubu a few yrs ago when
my sister died, some pills were added to my listing. Not a great fan of taking pills.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, rucyrious
I tapered off Klonopin last year under the care of a psychiatrist, having been on various benzos for nany years. A very slow taper worked for me. It can be done. My doc added trazadone and buspar to the taper process for management of symptoms.
Liked by Lisa Lucier, rucyrious
Hi Chris thank you dearly for your response. See if I can answer your questions as I go along as well as remembering them.
Yes I’m doing this on my own but with my primaries careful watch. This medication is the last one of my regimen. The past 3 years a lot was thrown at me. 2 diagnosis that were hard to swallow. Melanoma skin cancer and Multiple Sclerosis. MS is still on the fence but now they are thinking something worse. I was doing well on the MS meds and anti seizure medications, so I thought. Last year I was in relapse after relapse. Getting steroids infused a lot. It just happened that I kept missing days of the Klonapin or whatever the name is due to not being able to drive myself to the pharmacy. My kids were both at school and husband on the road which left me alone. After going through horrible side effects that was it, I needed off this medication. I had help from my primary and neurologist. Neurologist was against me coming off it but I didn’t care. Once I started lowering it, 2mg to 1.1/2 I was feeling less leg pain. I know this may sound funny but once I got down to 1-0.5mg, my moods, memory were so much better. I didn’t feel like I was in this strange bubble. I was actually thinking clearly too. My leg pain was better. My family started noticing my moods were calmer and I was happier. I felt like myself again. Bc we were lowering really fast I started noticing I couldn’t breathe, chest pains. Never felt like this in my life. After going to the ER, pulmonary doctor, cardiologist etc., no heart or lung issues, I was told I was Experiencing a full blown panic attack. I’ve never ever experienced a panic attack before and now that they have stopped (the medication) I was told this was due to side effects coming off this. That my body was addicted to this medication. Not my head, my body. 😳 I was baffled let alone furious. My own stupidity really. I did a lot of research about this medication and went right back to the original doctor who prescribed this and why. I’m still shocked about what I found. So I took it upon myself and lowered this with a lot of trial and error. I’m now on 4 days completely off it. Praying daily that I keep doing well. I did find out that I will need a good 6 weeks of being off this completely before I feel 100 percent and back to normal. So my plans going forward is to keep myself calm, stress free, away from extreme heat or anything that could trigger a MS relapse. Staying home and away from others that could effect my immune system. Listening to my body and eating healthy. Reaching out to people such as this site for help. I’ve always been to proud to ask for help but I’m finding that this, me cannot do this alone. I truly hope that I can help someone else when I get this behind me. Tysm Chris. Let me see if I answered all your questions.
What I’ve also noticed coming off this medication….
Panic attacks – increased
Hard too breathe, chest heaviness, jumpy, insomnia.
Was told to struggle through this that it was temporary.
No other medications were prescribed too help with this side effects.
Which is probably why it’s taken 1 year so far coming off 2mg’s.
Liked by Lisa Lucier, Chris Trout, Volunteer Mentor, rucyrious
Uh ohhh Chris, I thought I was responding to you, can you see a thread with your name on it from me??
Let me know and so sorry for the confusion..
I was on 1mg of Clonasapam for 15 years, tapered to. 50mg on my own, and began tripping, then falling.
I posted a lengthy reply last night.
Perhaps you can find it?
Yesterday was my first day in this forum and I am still practicing navigating it.
@xvxbyq315 Good evening. Yes, I have found your post from yesterday. Here is how you can find it. On the page, find your picture in the upper right hand corner next to the APPOINTMENT block. Now click on Profile. Then look down and you will see that all of your posts are listed by last one first. Let me know if this works for you. Chris . (PS…i have been on this forum for a couple of years and I still have to figure things out. Not to worry. It is good for me to review the processes.)
@rucyrious, Good evening. You have told your story well. What I hear loud and clear is that you are sailing this ship by yourself. Your intentions are clear, your goal is achievable. On the journey, you encountered numerous hurdles….culminating in a full-blown panic attack.
I can only remember one real panic attack and it was when I was coming off of Ambien after my reverse shoulder
replacement. It had been prescribed so that I could get some sleep while waiting for the surgery. I remember going outside and walking the street in front of my house hoping that someone would be available to help me. Of course, I survived and never want to feel that way again.
Your courage is evident and you will need it all. I do have some other questions if you don't mind. Have you ever had biofeedback training? After a horrible rear-ended accident, I was introduced to some nontraditional methods for relieving anxiety. Biofeedback was helpful in becoming aware of how our heart and mind react to trauma and then learning to measure the response and eventually control it.
Gratefully, I was able to master the technique. It came in handy later when I fell down the mountain and had a 45-minute ride in an ambulance to the ER. The crew told me they couldn't give me any more morphine because my blood pressure and heart rate were over the limit. My arm was tied to the light in the roof to keep it as straight as possible. So….I called upon my biofeedback knowledge to lower both my heart rate and BP. And it worked. Now, I can still call on that skill to keep anxiety at bay.
And here is question #2. Do you practice meditation, mindfulness and gentle yoga on a regular basis, like at least 5 days a week?
As I age….and my fascia gets all compressed and restricted at the same time that the needles and tingles from my small fiber neuropathy SFN) appear to be intensifying, I just hit the floor and begin my "practice".
I want to let you know that I leave tomorrow for 3 days of a retreat for mindfulness, meditation, and yoga. There will be 26 of us including my friend Betsy who does a heck of a good job managing her MS. And we practice noble silence and totally unplug from our digital devices.
So….let me know what might be possible for you and I will be back to read your thoughts and experiences on Monday.
Have a great weekend….find some joy and self-compassion.
I am going to tag John@johnbishop and Theresa @hopeful33250 and know that they will be here for you. Chris
Hello @rucyrious, Sorry to hear about the panic attack side effects from tapering off of your medications. I'm not sure if this will help but it is a list of techniques to stop a panic attack.
11 Ways to Stop a Panic Attack
Another site that maybe helpful that has some short videos that may be helpful — https://www.resilientoption.com/
Hi and ty so much…I will find it once I navigate this forum. I’m a bit confused but will figure this out. Thank you so much for your input. Can’t wait too find it.
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