Trying to taper off Clonazepam after long-time use

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I have been on Clonazepam for a long time (18 years). I have been trying to get off it for 3.5 years under the supervision of a psychiatrist; it would be an "understatement" to say the tapering down has not gone well.

 

Prior to starting Clonazepam, I had problems for ~8 years with (1) Unrefreshing sleep (2) Memory and (3) Anhedonia (low-grade Depression). A series of doctors tried many anti-depressants for these, all basically unsuccessful. About 4 years into this I started to feel some Anxiety as well. (For instance, I was laid off my job specifically because of my memory problems and slow performance at work - that provoked some anxiety.)

 

Eventually one doctor tried Clonazepam, and it was helpful for all 4 problems (sleep, memory, depression & anxiety). It was not a panacea - I still had problems with these - but it allowed me to function much better in life.

 

I was on Clonazepam (2 mg per day) for 15 years - it continued to work well. But a doctor warned me it posed a long-term risk for dementia, so I enlisted the help of a psychiatrist to assist with this.

 

The tapering-down of Clonazepam has been a disaster. Upon tapering down to 0.5 mg, I experienced severe withdrawal symptoms (tingling & numbness in my arms, tensing of muscles in my arms that cut off blood circulation to my hands and impinged nerves, causing carpal-tunnel-like symptoms, sweating, rashes all over my body, and many more).  At one point I was close to losing the use of my hands.

 

During the 3.5 years, we have tried 4 times to taper down to 0.5 mg, experienced withdrawal symptoms each time, and had to bump back up to 0.75 mg.

 

But meanwhile, 1.5 years into the tapering, all 4 initial problems returned (sleep, memory, depression & anxiety). The anxiety is so bad - much worse than prior to starting Clonazepam - that I wonder if it would be more accurately described as a withdrawal symptom, rather than an "anxiety disorder". I am at the point where I basically cannot function in life.

 

My psychiatrist is basically completely perplexed by my symptoms (often suggests they are "psychosomatic" and not real), and does not have any going-forward plan. He has suggested maybe we should bump further up to 1 mg Clonazepam, and maybe that will make me more stable, but perhaps never be able to get off it.

 

I recently consulted with an addiction medicine doctor, who concurred with 1 mg as a possible approach, or alternatively to go "cold turkey" off Clonazepam, using Depakote or Carbanazepine to stabilize the nervous system. (He says quitting cold turkey may be easier than gradually tapering.) Sounds intriguing, but scary - I don't want to lose the use of my hands again.

 

Curious if anyone here has experience with this type of thing. Appreciative of any info.

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Hello goldpath22,

 

Welcome to Benzo Buddies! You are not the first person who had unsuccessful attempts at tapering, myself included.  I'm sorry the symptom of muscle tension caused you to lose the use of your hands.  Benzos are very efficient muscle relaxers. When reduced or stopped the muscles have to learn to relax naturally, without chemical intervention. This can take some time.

 

One thing that might have impacted the success of your previous tapers is the speed at which you tapered down to .5mg. Clonazepam is a very strong benzo, I personally could not taper from it. Of course, at that point I didn't have much information about tapering so my cuts were large.  What kind of plan did you follow?

 

There are options for you so I'm glad you've joined the forum. I would suggest you do some reading and ask questions, you'll then be able to find a plan that works for you. One thing I would strongly avoid if it were me, stopping cold turkey.  There are not many good reports about this method. In fact, it is the least effective or safe way to withdraw from benzos. Many times the adjunct medications will have to tapered as well.

 

I'll give you a link to the Planning Your Withdrawal Board. Generally, a reduction of no more than 5-10% every 10-14 days is suggested. Some people go even slower,making small reductions on a daily basis.

 

I'll also give you a link to the Ashton Manual. It is an excellent resource about benzos, tapering and withdrawal. The manual was written by Dr. Heather Ashton, a pioneer in helping people withdraw from benzos.

 

This is doable, with a sensible slow taper plan.  I will mention that withdrawal anxiety is far worse than 'normal' anxiety and will ease up once the nervous system starts to recover.  Settle in and do some reading and let us know how we can help.

 

Planning Your Withdrawal (Taper Plans)

 

The Ashton Manual

 

pianogirl 

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Welcome to BenzoBuddies goldpath22!

Your story is very common unfortunately, many of us on BenzoBuddies share your experiences. When benzodiazepines are prescribed patients rarely know and understand the potential long term effects of their medication. Even doctors do not know or forget the variety of problems benzodiazepine use causes.

You have come a long way and suffered a lot while trying to reduce the amount of medication you take and it is a great accomplishment already that you are down to 0.75 mg. It is also great that you realized that your symptoms currently experiencing are not the result of the return of your anxiety but caused by withdrawal/tolerance to your dose. It is a vicious cycle and the best course of action to continue to wean off yourself of the medication as your doctor recommended but as you know and even the drug manufacturer warn against the abrupt discontinuation of benzodiazepines. Detox centers, "drug experts" often encourage cold turkey approach but it is rarely successful. You have been tapering for a long time and while it has been difficult  you did it and your brain has accommodated the changes. To keep moving forward with your taper it is important to understand What's happening inside your brain and that may help you to hang on to your taper plan or perhaps adjust the speed should you decide wanting to go faster due to your symptoms. Your BenzoBuddies can be a great source of comfort and encouragement from people sharing your experiences. Please share your thoughts and ask questions, hopefully your BenzoBuddies can contribute to your healing process.

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Thank you Pianogirl.

 

My doctor's original planned taper was:

> Starting at 2.0 mg

> Week 1:  1.75 mg (12% reduction)

> Week 3:  1.50 mg

> Week 5:  1.25 mg

> Week 7:  1.00 mg

> Week 9:  0.75 mg

> Week 11: 0.50 mg

> Week 13: 0.25 mg

> Week 15: 0

 

Aproaching Week 7, I was still fine. However, at this point the doctor deviated from the plan, and instructed me to jump down from 1.25 mg to 0.5 mg. He seemed experienced, so I didn't question it.  At Week 9, I continued the taper, to 0.25 mg - that's when the tingling / numbness / muscle tension / hypersensitivity-to-touch in my arms started, along with coldness / blue color in my hands. By Week 11, it had blown up into carpal-tunnel type symptoms in my wrists / hands (electric-shock sensations when pressing a key on a keyboard), and I had to stop nearly all use of my hands. The doctor - and a number of other doctors - interpreted it as simply carpal-tunnel syndrome and I went through a maze of tests / treatments for that; no one made the connection that it was a withdrawal symptom from the Clonazepam. However, the doctor bumped up to 1.0 mg at Week 12, and by Week 15, the tingling began to diminish.

 

At Week 17, the tingling was further diminished, and we tapered back down to 0.5 mg. (At this point we still thought the symptoms in my wrists were carpal-tunnel from excessive typing at work, although that was diminishing too due to resting my hands.)

 

At ~Week 21, the tingling was even further diminished, and we tapered further to 0.25 mg. Very quickly (Week 22) the tingling increased significantly, and we bumped back up to 0.5 mg; then very quickly (Week 23) the tingling was diminished again. (This equates to approximately Month 6.)

 

I stayed at 0.5 mg through Month 14. During this time, I saw a "bodywork" practitioner (chiropractor who has additional "Eastern medicine" skills), who was able to identify that the electric-shock symptoms in my wrists (and coldness / blue color in my hands) were from muscle tension in my arms that was occluding the nerves & blood vessels, and did deep-tissue work that would alleviate these symptoms for up to a week at a time. But we still did not understand that the muscle tension was from the withdrawal of Clonazepam.

 

By Month 14, my sleep & memory were also worsening - starting to resemble what they were like 16 years previously, before I ever started Clonazepam. My doctor, going by the literature that says Clonazepam worsens sleep & memory, had me taper down to 0.25 mg again, and then down to 0.125 mg, at which point the tingling returned with a vengeance. He returned to a dose of 0.5 mg.

 

We stayed at 0.5 mg until Month 24. At this point I had developed symptoms of Anxiety. Crazy symptoms - for example I would be driving and have an extreme sensation that I was going to crash- a pounding heart and sense of doom in my chest, way out of proportion with the actual driving situation. I would try to laugh it off, as it was so absurd, but couldn't stop the symptoms. I also felt the return of some tingling again, so my doctor bumped me up to 0.75 mg. This eliminated the tingling, and greatly reduced the anxiety symptoms.

 

During Month 26, I had a short episode when traveling long-distance and realizing I was short on Clonazepam. I had to reduce my dosage to 0.5 mg for 4 days before returning home to get a refill from my pharmacy. During those 4 days the anxiety symptoms shot back up again.

 

Around Month 32 I began to experience worsening anhedonia / depression. (Lack of joy when doing normally-enjoyable things.)

 

I'm currently at Month 40, still at 0.75 mg. The tingling, numbness, muscle tension, occlusion of nerves & blood vessels, carpal-tunnel symptoms, cold hands, and hypersensitivity to touch are gone. I'd say the anxiety symptoms that are “palpable” are more or less under control. But I still have really bad sleep, memory & depression problems. When I wake up, I am covered in sweat with heart pounding; I believe this is disrupting the REM stage of my sleep. (The “heart pounding” mostly goes away upon getting out of bed.) Memory is really bad. As an example, the simple task of reading the newspaper has become a huge challenge – nearly every news story feels new & unfamiliar, whether it’s political issues, laws & regulations, trend in pop culture, and [before the COVID crisis], trends in my favorite sports. I’m an amateur musician and now have extreme difficulty remembering words & chords to my own songs. With construction & changes to local streets, I have extreme difficulty remembering new driving routes. Shopping at a grocery has become very difficult, even with a shopping list in hand. It’s become nearly impossible to function in life. Nevertheless, my doctor says my memory problems are my “perception” only; not real.

 

(The only way I was able to compose this message was by referring to my detailed diary. Otherwise I would have no possibility of remembering such detail. (Even with my diary, it took me nearly 3 hours to compose this timeline & message.)

 

Interestingly, the coronavirus crisis has not affected my anxiety, not even the tiniest bit! I interpret this to mean that I do not have “anxiety disorder” (i.e. excessive worrying & reaction to things); and instead the anxiety symptoms are a withdrawal symptom from tapering down the Clonazepam.

 

At this point, I believe:

> I am still experiencing withdrawal symptoms from tapering of Clonazepam

> The anxiety withdrawal symptom mainly manifests itself during sleep; specifically the period of sleep between 4-6 AM, and disrupts my REM sleep.

> The disruption of REM is impairing my short-term memory.

> Memory problems and associated repetition of failure in completing simple tasks is further driving up anxiety; a viscous cycle of anxiety-sleep-memory.

> The long-term failures in completing basic life tasks is driving depression.

> Further tapering down of Clonazepam would risk worsening of sleep, memory, anxiety & depression, and return of tingling / muscle tension / carpal-tunnel symptoms.

 

My doctor is suggesting to bump back up to 1.0 mg. In a way, that sounds like it would offer great relief. But I think it means staying on Clonazepam for a very long time, possibly forever. (Unless we can discover a way to get off it without affecting sleep, memory & hands so violently.)

 

The other doctor (the addiction medicine specialist) is suggesting to go “cold turkey” off the Clonazepam and replace it with Depakote, which based on your input, sounds very risky.

 

I’m just very confused on how to proceed forward. I’ll certainly read thru the Ashton Manual / etc.

 

- Goldpath22

 

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Thank you Sherpa for the "What's Happening Inside your Brain" post. I will study that.

 

- Goldpath22