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Rebeccas Successful Taper of Klonopin

HOW I TAPERED OFF KLONOPIN (CLONAZEPAM)

Last Revised 3/5/09

BRIEF HISTORY

I began taking Klonopin (clonazepam) for insomnia in 1996.  (I have been ill with chronic Lyme Disease and severe post-exertional fatigue since 1994.)  At first, the Klonopin worked really well; a quarter milligram would help me fall asleep quickly, and I woke up feeling refreshed.  I took it maybe a few times a week.  After about six months, I noticed that I would often have to take a half milligram to get the same effect.

In June 1997, I stopped taking Klonopin abruptly because a homeopath I was seeing thought his medicines would work better if I was off Klonopin.  I didn’t reduce the dose gradually; I figured since I didn’t take it every single day, it would be okay to quit suddenly.

A few weeks later, I suddenly developed severe hyperacusis after exposure to an extremely loud noise  (a jackhammer drilling at close range).  This was not the common mild sensitivity to sound that a lot of people with Lyme and CFS have, but a collapsed tolerance to normal environmental sounds.  I had to wear earplugs and earmuffs all the time even though I live in the country.  I couldn’t tolerate ordinary speaking voices or the sound of the faucet running.

My audiologist tested me and found my tolerance was 30 db--the rustling of paper.  My hyperacusis was extraordinarily disabling for more than two years.  It took 25 months of Modified Tinnitus Retraining Therapy to return to normal limits.

At the time, I didn’t make  a connection between my recent cold-turkey withdrawal from Klonopin and the onset of my severe hyperacusis.  I didn’t think about it again until I read  Benzodiazapines: How They Work and How to Withdraw (The Ashton Manual), by Heather Ashton DM, FRCP (United Kingdom). Dr. Ashton is a professor of psychopharmacology who ran a benzodiazepine withdrawal clinic for ten years.

These quotes from her book gave me pause:

“Rapid removal of the drug opens the floodgates, resulting in rebound overactivity of all the systems which have been damped down by the benzodiazepine and are now no longer opposed. Nearly all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug-free state develop, the brain and peripheral nervous system are in a hyperexcitable state, and extremely vulnerable to stress.” (The Ashton Manual, Chapter 3)

“...Certain symptom clusters are particularly characteristic of benzodiazepine withdrawal. These include hypersensitivity to sensory stimuli (sound, light, touch, taste and smell) and perceptual distortions....” (The Ashton Manual, Chapter 3)

I now believe that there were three factors that caused me to get hyperacusis, each necessary but not sufficient:

- Chronic Lyme Disease/post-exertional fatigue
- Exposure to very loud noise
- Having suddenly stopped taking Klonopin.

In other words, I believe--but don’t have proof--that if I had tapered off Klonopin gradually, or if I had never taken it at all, I wouldn’t have gotten hyperacusis.

Soon after the onset of my hyperacusis, in  August 1997, my doctor told me to start taking Klonopin again, this time every day.  She thought it would help my hyperacusis.  (It didn’t.) 

During the next two years, my hyperacusis did get better with the Modified Tinnitus Retraining Program but my overall health, including my sleep, declined.  When my insomnia got worse in the spring of 1999, my doctor told me to increase the dose of Klonopin.  My starting dose at bedtime was 0.5 mg; if I had trouble falling asleep, I would take more, sometimes as much as 2 mg (the equivalent of 40 mg of Valium).

I kept taking Klonopin daily over the years, like a multivitamin.  I sort of forgot about it.  I couldn’t sleep if I tried to reduce the dose, so I assumed I needed it.

In 2002, when I started antibiotics to treat my chronic Lyme, I developed horrendous insomnia.  I would regularly have all-nighters or nights with only a couple hours sleep despite taking a milligram or two of Klonopin. (I was unsure whether the insomnia was a side-effect of antibiotics or the result of Lyme die-off, or both.)  Finally, my doctor added another benzodiazapine, Restoril, to the Klonopin.  That combination worked for a while.  But the night before my friend’s wedding, I had to take the equivalent of 80 mg of Valium to get two or three hours of sleep. 

The fall of 2002, when I started doing neurofeedback (brainwave biofeedback), my sleep improved enough that I was able to plateau the dose of Klonopin, and then gradually reduce the starting dose back to 0.25 mg. I didn’t know how to go below that amount because I couldn’t cut the pills any smaller. And if I had insomnia, I would take up to 2 mg that night.

In 2005, my health got badly worse and I became homebound and bedbound.  I went to the doctor twice after this and crashed to a lower level each time because of my post-exertional fatigue.  For a while my regular doctor refilled my Klonopin prescription by phone, but then she said I would have to come to her office to get it. I didn’t feel I could make that trip again without getting worse.  (I live in a rural area and her office is over an hour away in good weather.)  So I found a closer doctor who was willing to make a house call.  It seemed my problems were over--until he kept canceling and I was about to run out of Klonopin.  I had no idea how my body would react to another cold turkey withdrawal.  I knew I had to get off it safely, but I didn’t know how to do so until I read The Ashton Manual.

THE TAPER 

I slowly tapered off over about 15.5 months, using water titration to get exact dosages and reductions.  Water titration is vital once you go below 0.25 mg Klonopin (equivalent 5 mg Valium) because it’s impossible to cut the pills accurately at that point.  My average dose of Klonopin, before I began tapering, was about 0.5 mg (equivalent 10 mg Valium).  My dose had crept back up over the years.

The Ashton Manual is an excellent resource that gave me advice on tapering schedules, what symptoms to expect, and how to manage them.  Unfortunately, Dr. Ashton doesn’t discuss water titration, though. Instead, she recommends transferring from your current benzodizapine to Valium and reducing by cutting the Valium. I didn’t have access to Valium.  Plus, I didn’t know how I would react to transferring to it. 

For water titration, I used three main pieces of equipment: a beaker, a mortar and pestle, and a power mixer.  I purchased them for about $25 through links given at this site:

http://benzosupport.org/water_titraion_equipement.htm

I also purchased some colored glass jars in which I stored the next day’s titration in the refrigerator.  The crushed Klonopin in water keeps for less than 48 hours, so every other night I would prepare two days’ worth of titration.  The colored glass prevents light from harming the Klonopin/water mixture.

My first reduction was about 8%.  (I had previously tried a 30% reduction and barely slept for two nights.)  Dr. Ashton recommends that the first reduction be between 5 and 10%.

Approximately every 8 days, I would reduce by about 4%.  So, for example, once I got to a quarter mg of Klonopin, this was my routine:  Every other night, I crushed 1 tablet (half milligram) of Klonopin and suspended it in 100 mL of water (measured in the beaker).  I divided the water in half so there were 50 mL in each jar.  I drank one dose and stored the other in the fridge for the next night.  That was a quarter milligram, which I stayed on 8 days.

To reduce, I started with the same 100 mL; took out 4 mL with an eyedropper and discarded it; divided the remainder in half; and put 48 mL in each jar.  In other words, I had gone down by 2 mL, and I stayed on that dose for another 8 days.  Then I went down to 46 mL, 44 mL, etc.

As my dose went down, I found I had to do smaller cuts.  I also increased the amount of water again over time, making the doses more dilute.  My final dose, after 14 or 15 months of titrating, was 1/40 x a quarter mg of Klonopin (equivalent 1/8 mg Valium).  After 8 days on that dose, I took it every other night, then every third night, then every fourth, until I finally took my last dose.  For a couple of weeks afterwards, I drank a “placebo”:  50 mL of water chilled in the fridge in the same colored glass jar--but it contained no Klonopin!

These steps were key to tapering successfully:

1.  Once I started tapering, I never again raised the dose.  Before I began tapering, I would start with a baseline dose--about 3/8 mg Klonopin--but if I couldn’t sleep, I would keep taking more that night.  I would take additional quarter milligrams until I fell asleep.  When I began the water titration tapering, I didn’t take extra Klonopin, even if I had trouble sleeping.

2.  I took the Klonopin at exactly the same time every night.

3.  I consolidated the Klonopin into one dose.  Previously, I would take some when I was getting ready for bed and more just before I dropped off.

4.  If something stressful happened, I would delay reducing the dose.  I plateaued on a dose for up to 3.5 weeks.  I was setting the pace of withdrawal myself; I didn’t feel pressured to keep up with someone else’s schedule.

5.  I would give myself at least 5 days after reducing before doing anything extra, like going to the doctor, seeing a friend, etc.  (Because of my post-exertional fatigue, those are major activities for me.)

6.  I just planned on feeling awful the first day or two after a reduction.

WITHDRAWAL SYMPTOMS

The main withdrawal symptom I had been worried about was insomnia, because that was the reason I took Klonopin in the first place.  The insomnia was not as bad as I expected.  I did have about 6-7 all-nighters over the 15 months, when I got no sleep at all, and quite a few other nights of 1-2 hours of sleep.  The truth is, though, the insomnia was not significantly worse than before I started tapering.  This makes sense, because, as Dr. Ashton points out, long-term use of benzodiazapines can *cause* insomnia. The drug had basically stopped working for me years ago.  

My other withdrawal symptoms were:

- Balance problems
- Muscle twitching all over my body
- Muscle tightness
- Jumpiness/ overactive reflexes
- Sensory hypersensitivity (sound, color, movement, touch, light--but especially sound)
- Cognitive problems/ trouble with recall
- Some depression/anxiety/irritability
- Feeling disembodied/ depersonalized
- Vivid dreams/ nightmares, especially toward morning
- At times worse fatigue (though at times more energy)
- Return of forgotten memories, esp. while falling asleep
- Flu-like symptoms (occasional)

Of these, the symptom that bothered me the most was sensory hypersensitivity, especially sound sensitivity.  This makes sense because I have been prone to sound sensitivity throughout my illness.   Dr. Ashton writes, “Withdrawal often seems to seek out the individual’s most vulnerable points...” (The Ashton Manual, Chapter 3)

One pleasant surprise was that I began to have surges of energy almost as soon as I began tapering.  I took my Klonopin at about 11 pm; I frequently found that at around 1 or 2 am I would have a burst of energy when I could get up and do a little bit of deliberate exercise (walking down the hallway or bouncing myself in my rebound exercise chair) for the first time in years.   (I have been mostly bedbound and unable to walk around much or shower since 2005.)

What I used to help me cope:

- Earplugs the morning after a reduction
- Avoiding excessive mental stress and sensory stimulation right after a reduction
- Written exercises developed by David Burns, M.D.  I used the ones found in his books *Feeling Good*, *The Feeling Good Handbook*, and *When Panic Attacks*.  Doing these exercises for about 30 minutes, once a week, helped keep my mood under control when I experienced mood swings as a result of withdrawal.
- Unisom (over the counter sleep aid) a few times
- Relaxation techniques (progressive muscle relaxation, meditation)
- Extra neurofeedback (brainwave biofeedback) for insomnia
- Psychological support/ encouragement from my caregivers

As of February 2009, I’ve been off Klonopin for 3.5 months.  A lot of my withdrawal symptoms, such as muscle twitching, have almost gone away.  I still feel disembodied a number of times every week; I hope that will pass in time.  Sensory hypersensitivity is much improved.

Dr. Ashton says it takes “several” months to recover from a taper.  People in online and regular support groups say that it took them longer, at least a year.

These are positive results I’ve noticed from being off:

- Improved sleep quality/ more refreshing sleep
- I don’t feel as bad if I’m short on sleep
- Improved mental clarity/ cognition
- Steadier mood
- Slightly increased physical energy

Even though the taper was difficult, I’m glad I went off Klonopin.  I feel better mentally and physically and my sleep has actually improved.   Also, I no longer have to worry about where my next dose is coming from and what would happen if a doctor wanted me to go cold turkey on it.

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