2mg Clonazepam for 27 years

[David1503]

Hi from the UK

I have joined on behalf of my 75 year old mother who is currently suffering awful withdrawl symptoms from Clonazepam (Klonopin). My mother has a lot of health issues including Lupus, Type 2 Diabetes, Fibromyalgia, Arthritis, TIA in 2002, severe fall and head injury in 2021.

In May 2024 she first seen the Pain Management doctor who is trying to rationalise her endless amount of medication and switch her to more suitable medication.

He advised her to switch Sertraline for Duloxetine (currently on 60mg) begin Pregabalin (currently on 100mg). For her to stop Clonazepam which she has been on 2mg for 27 years and Pramipexole which she has been on for 8 years.

She began tapering of Clonazepam reducing by 0.5mg per month and took her last tablet on 18th October 2024. On 3rd November she started experiencing the following symptoms:

Numbness/tingling/weakeness down the right side of her body, this began to spread to her left side a couple of days later. The numbness and tingling is now in both legs and feet.
Severe insomnia
Whooshing noise in her head (made worse when I am pushing her in her wheelchair)
Unsteadiness on her feet
Headache
Muscle and Joint pain

In the last week I have had 2 lots of paramedics out, took her to GP, took her to A&E as I thought she was having a stroke. However all medical professionals have assured us that she is having withdrawal symptoms. It is extremely traumatic to watch her. Any advice or reassurance would be appreciated.

Thank you

Edited November 13, 2024 by David1503

[James]

Hello David,

I too suffered from every single one of the symptoms your poor Mother is experiencing. Every single one. Just like your Mother they were all going on at the same time. 

 

Numbness and tingling started about a month into my w/d. It lasted 14 months. The timelines are vague but I'll get it close. It eventually went away. I used to joke to myself (there was no one to joke to) that my feet were actually bags of glass as that was how it felt when I walked. My feet essentially fell apart as the skin came off in strips. That's another story.

 

The burning of the skin was very troubling. It was like it was on fire. Nothing but time can heal this.

 

I slept fitfully if at all. I stayed in bed for days on end. Hoping, honestly, that I would catch 1 minute of sleep as that would reset my brain. That would lead to a lessening of my anxiety which was off the charts. Just terrible. One such period I stayed in bed for what I know was 4 days straight. I remember falling to sleep with the light on as I thought I could trick my body into thinking I wasn't really going to sleep, I was just lying there. These are the things you go through when in w/d.

 

I was very unsteady on my feet. This lasted for at least a year. Maybe more. I often thought I would fall. I never did. I was dizzy for weeks on end. Your Mother may be experiencing this as well. I started walking on my block to just try to get my muscles to work. I remember walking a half block and turning around as I wasn't sure I could make it back to my house. Now I walk miles and miles on the beach.

 

My brain hurt so bad I would try to squeeze my head with my hands. It brought some relief. When I would lie in bed I thought my head was going to explode. I don't have that symptom now. It went away after at about a year. Much suffering.

 

My muscle and joint pain was so ferocious I contemplated going to the hospital as I didn't know what to do. I thought I had developed arthritis. The muscle pain was excruciating. The joint pain just added to it.

 

I have one thing to say to you. I'll pray for your Mother. She is going to feel better after about 6 months off the drug. That's when I knew I would be getting better. I spoke with a good friend who's Uncle runs 3 clinics for drug users. He said about me that I would be feeling better after about 6 months. He is in the business of knowing about this. After having been through what I have I will concur. It's going to take that long.

[Brian Hanson]

Hey James, thanks for the story. I tapered from 1.5 mg clonazepam to 0 over a span of 2 months, it was terrible. Last dose was about July 1, 2024. About 4.5 months ago. I'm trying to hold it together but still have insomnia, muscle spasms, twitching, but the absolute worst is the rumination and obsessive thinking. Not sure if that was caused by the benzo withdrawal. So your symptoms were way worse than mine. Did you ever make a full recovery? The 6 month mark is like the beginning of feeling better? I haven't had much anxiety for the last couple months, but just recently a wave of muscle twitching and jerks hit me. Insomnia wave too. I'm looking for some hope, some words of encouragement. Thanks! Brian

Edited November 17, 2024 by Brian Hanson

[Brian Hanson]

@JamesHey James, thanks for the story. I tapered from 1.5 mg clonazepam to 0 over a span of 2 months, it was terrible. Last dose was about July 1, 2024. About 4.5 months ago. I'm trying to hold it together but still have insomnia, muscle spasms, twitching, but the absolute worst is the rumination and obsessive thinking. Not sure if that was caused by the benzo withdrawal. So your symptoms were way worse than mine. Did you ever make a full recovery? The 6 month mark is like the beginning of feeling better? I haven't had much anxiety for the last couple months, but just recently a wave of muscle twitching and jerks hit me. Insomnia wave too. I'm looking for some hope, some words of encouragement. Thanks! Brian

[James]

In response to your post, think of your nerves in this way. They are literally on fire. Exposed to any electrical impulse there is. This is why IMO, you are having any kind of symptom. During the first few months of w/d I suffered from twitches and spasms as my body was trying to paint over those raw nerves so they wouldn't fire basically all the time.

 

I would lie in bed and have about 500 different twitches and spasms all at once for hours on end. In fact I don't think they ever gave me a reprieve. It was a constant. Twitching and jerking and then the random slam in the back like someone had punched me. That usually came when I was about to fall to sleep. Sleep was nearly impossible during this time as I think you're experiencing. I honestly prayed for 1 minute of sleep if that's all I could have. Now, I sleep when I can and don't worry about the clock. I just take it. Been falling asleep around 5am and sleeping until 10. That's not so bad really. 

 

Rumination, obsessive thinking, intrusive thoughts, dark thoughts. I was suicidal for many months into this w/d. Every day it was all I could think about. The main reason I didn't do it was because of my family. I knew it would set them up for generations of failure. These thoughts are gone and have been gone for at least a year. I think about this stage now and can't comprehend why or how I was thinking in this manner. I have absolutely zero thoughts on this now. Only the thought that I am glad I hung in there and didn't do anything that would be so final and tragic. You need to realize these thoughts will go away very soon. You need to hang in there for a couple more months and you'll be through the major fire.

 

I would say the 6 month mark was a major milestone for me. On November 8th 2023, I went back to the gym. I began my w/d on June 3rd, 2023. I was out of my gourde. I told the clerk at the gym, who I knew for a few years, that I was losing my stuff in a big way. His response? "Keep going, because no one can tell!" That gave me great encouragement. Fake it till you make it. I didn't miss one day for around the first 100 days back. I am a dedicated to fitness and it has helped me greatly in getting out of the house and healing. Being consistent lends itself to all facets of life. It helps to know you can put your head down and go through your day and not have to really think about what you're doing. You just do it.

 

I have insomnia right now. It started right after I began getting really well. I can deal with this as the anxiety, intrusive thoughts, and for the most part the muscle spasms and jerks and twitches are all gone now. Insomnia nd anxiety coupled together were nearly my undoing.

 

YOU will get better. That I can assure you. You need to keep in mind that today is but one day. You can get through it. I like to think to myself about it this way. When I am trying to get to sleep and am preparing for bed, I think, "Maybe tonight is the night things get back in line." Then when it doesn't come I just move on to the next night. This is because I know that every facet, every phase of this w/d was the same way. Just wait it out. Your body is going to heal itself. It is just a matter of time.

 

There were countless days and nights where I thought I was stuck in a wave. I thought I will never recover from this only to have a window appear that day. Like a switch flipping. Not from sleep but it would just flip at any time during my waking hours. I would all of a sudden feel better and think that I was making progress, finally. When I thought I just couldn't take any more, my brain would flip and I'd be in a new window. Just like that. As if the phrase, "GOD only gives you what you can handle", was true. It certainly was for me.

 

Keep in mind that I don't credit myself for any of my recovery. It is GOD's will that we recover. HE has given me a second chance at this life. I am grateful. After lying in bed for countless hours in what only can be described as agony, I am about 95%. There are still issues I have like soreness and stiffness, but I will gladly take this over what my mind was doing in the depths of w/d.

 

I had some waves that lasted 40 days. I was incredibly tired and sore although I was not really doing much muscle wise. So tired, unsteady, sore, dizzy, all these things are now in my past. They will be in your past too. Just hang in there.

 

Don't let those intrusive thoughts consume you. You will be ok. I am a testament to that.

 

I don't know if you're a religious man but I found this prayer to be very powerful. It was given to me by a man who I shared all my symptoms with. I couldn't talk on the phone for many months but when I could I called this guy. Anyway, here's the prayer he gave me after asking if I thought I should take control of my recovery. It WAS time.

 

"I cast out and bind all unclean spirits looking to inhibit my recovery in any way, in the name of JESUS CHRIST." That's it. Very simple but incredibly strong. I am not a super religious man but I will testify that to the day I started saying this prayer, my recovery took off. It can't hurt.

 

Great luck to you and please revisit this board. I think it is a great help. 

[Triny]

Hello @David1503, I really feel for your mother! 

 

Her taper has been extremely fast and this has caused serious withdrawal symptoms. 

Usually in such cases an up-dosing to 1.0 - 1.5 mg or reinstatement to 2.0 mg could lead to a stabilisation and disappearing of the symptoms. 

 

After the person is stabilised, a slow taper could be started with reductions of 5-10% per 2-4 weeks. 

The book 2024 Maudsley Deprescribing Guidelines outlines such a slow taper plan in the chapter for Clonazepam and can be very helpful. 

 

The Ashton manual - can be found free online also explains in great detail benzo tapering and withdrawal, however, the proposed taper plans in it could be too fast for your mother. 

 

I wish your mother a swift stabilisation and a smooth taper!

[Rosalind]

I’m sorry this has happened for your mother. The lack of knowledge here in the U.K. sadly causes this to happen for far too many due to the addition of further psychoactive drugs.

Symptoms can be caused by the reduction of the benzo, the interaction of any other other drug (which also needs a safe taper eventually) and side effects of anything else taken. She needs knowledgeable support. The Ashton Manual and Mark Horowitz’s ‘Describing Guidelines’ can help a little but in the end it comes down to what she can tolerate and a safe, slow withdrawal plan from each drug.

 

As she appears to have several health issues going on which may or may not have been caused by the benzo she does need informed medical help. 

 

Also be aware that yes, we do become more sensitive to drugs as we age but withdrawing safely is still perfectly possible. Let us know how things go.