Over the past couple of years, I have discontinued many medications. Most of them were antibiotics. Those were easy to go off of. The hardest so far has been Klonopin (clonazepam). The second hardest was Depakote. I was on both for migraine prevention. I didn’t even know that Depakote had a psychotropic effect until I struggled to get off it.
Klonopin, and to a lesser extent Depakote, are commonly prescribed to people with CFIDS/ME (chronic fatigue syndrome/myalgic encephalomyelitis), fibromyalgia, and migraines. I wanted to post about my experiences of withdrawal because I am guessing that other people who recover from chronic illness with neuroplastic approaches might also want to get off unnecessary medications. I am hoping that reading about my experience might be useful to them.
What Is Klonopin?
Klonopin is a heavily prescribed benzodiazepine in the US and many other countries. Most people take it for anxiety, but it is also an anticonvulsant (anti-seizure drug). It is often prescribed to people with CFIDS/ME for trouble sleeping, cognitive impairment, and sometimes pain reduction.
What Is Depakote?
Depakote (divalproex sodium) is an anticonvulsant and “mood stabilizer.” It is most commonly used for bipolar disorder, depression, migraine prevention, and seizures.
How I Started Taking these Drugs
I started taking 0.5 mg of Klonopin, as needed, for insomnia in the midst of a trauma, in 1998. I was displaced suddenly from my home, staying with family, which was already stressful, when my best friends’ house — where my cats were staying while I was away — burned down. My best friends became homeless and one of my cats was never seen again.
For several years, I took Klonopin only occasionally, when I couldn’t sleep otherwise. However, within a couple of weeks of taking Klonopin intermittently, I discovered I was habituating to it. Habituating means that your body adjusts to the drug, and you need to take more for the same effect as previously at a smaller dose. Habituation is not the same thing as addiction or dependence. Habituation with Klonopin is the rule, rather than the exception. Most people who take Klonopin habituate quickly to it, which is why people keep bumping up their dose over time.
Later that year, I moved to the country. Within a couple of years of that move, I was getting migraines more and more often. (Many years later, we discovered that these migraines were due to Lyme disease.) Eventually I had migraines almost all of the time. In desperation, I started seeing a neurologist who specialized in migraines. She put me on drug after drug to try to find something that would prevent the migraines. Almost all of these drugs were anticonvulsants. Most of them caused adverse reactions. Some of them did nothing.
During this phase, I noticed that on the days I took Klonopin in the early morning to get back to sleep, I was less likely to have a migraine that day. When I told my neurologist, she suggested that I take Klonopin every day, twice a day. Because I had habituated to the drug by then, I ended up taking one 1 mg tablet at bedtime and one on waking. I stayed on this dose until 2013, which was about ten years, I think.
The only other drug that seemed to help the migraines at all was Depakote, which also caused a great deal of weight gain. My first neurologist prescribed it. I gained about 30 pounds within a few months. Almost all anticonvulsants cause weight gain, but Depakote is notorious for being particularly likely to cause a large of amount of weight gain very fast.
Depakote messed up my sense of hunger and satiety, so even when I was full, I still felt hungry. My guess is that it acts on the hypothalamus, which is the part of the brain that controls hunger and satiety and is part of the limbic system. I went off it and tried other drugs, none of which helped.
Eventually, I gave up on this neurologist and tried another. He also prescribed different drugs, but for longer periods to test them out. Again, Depakote helped migraines moderately, and I stayed on it. I was on it till 2013. Because of the extreme weight gain, and because Depakote only seemed to help somewhat with migraine prevention, I tried to go off it several times over the years. I would reduce the dose somewhat, and all would seem well. I would reduce it more, and then I’d get hit with a cluster of severe and relentless migraines. My doctors and I thought this meant that the Depakote had been helping my migraines, and without it, they were returning, so I would go back on a full dose. I gained over 60 pounds in the years I was on Depakote.
The Migraine and Lyme Connection
The first time I had relief from migraines was after I was diagnosed with Lyme disease in 2007. I went on amoxicillan, and during that first month of treatment, I had only about three migraines, which was unheard of for me at that time. (I usually had migraines at least two-thirds of the time.) I told my neurologist about it, and he said, “There is no connection between Lyme disease or antibiotics and migraines.”
I thought this was a pretty silly response to a very exciting and hopeful development for me, but the migraines did come back after that first blissful month of almost none. A few months later, I switched to a different antibiotic, cefuroxime, and again I had a month with just a handful of migraines. Then they came back again.
I spent several years aggressively treating Lyme and other tick-borne diseases with antibiotics and antimalarials. During this time, when I was herxing (experiencing symptoms from microbial die-off), my migraines would get much worse. Eventually, as I started to recover from tick-borne infections, the migraines got less frequent and less severe. I went through menopause at age 42, which further reduced migraines.
How I Got Off Depakote
In 2012, I decided to go off Depakote. By then, I had learned a lot more about drug withdrawal. (If you want to learn more about psychotropic drugs and how to withdraw from them, I recommend the book, Your Drug May Be Your Problem.) I also researched online. I learned that if you are on Depakote for migraines, you will likely get rebound migraines during withdrawal. (If you are taking Depakote for seizures, the most common symptom from withdrawal is to get seizures, and so on.) Other common withdrawal symptoms that I experienced were anxiety, agitation, and mood swings.
The main thing I had learned about drug withdrawal — especially for any drug that is psychotropic (has mood-altering effects) — is to go off them much more slowly and gradually than you think you have to. THIS IS TRUE FOR ANY MEDICATION THAT LIKELY AFFECTS MOODS, EVEN IF YOU ARE NOT ON IT FOR A MOOD DISORDER!
I’m going to repeat this because I think it’s so important:
Go off mood-altering medications
much more slowly —
at lower dose reductions
and at longer intervals —
than you think you have to.
Go off very, very GRADUALLY!
When migraines were worst, I was taking 1500 mg of Depakote a day, which was one 500 mg tablet three times a day. When I was ready to start reducing, I was taking 1000 mg a day. I thought that the smallest pill available was 250 mg. (That’s what I was told, but it turns out there are 25 mg tablets. Let this be a lesson to you: Google is your friend. If you’re not sure you’ve been given accurate information from your doctor or pharmacist about the smallest available dose for a medication, do an internet search with the question, “what is the smallest dose of [your medication]?”)
Anyway, what I did was this:
- I read what I could find about common withdrawal symptoms of Depakote.
- I told my partner and my personal care assistants that I was going to start reducing the drug, and I asked them to let me know if they noticed any of these withdrawal symptoms. I also asked them to have extra patience and understanding if my behavior or moods were erratic, and to know that it was nothing to do with them!
- I made a list of things I could do to take care of myself if my moods got wonky. The most important thing was to remind myself that these difficult moods were NOT real! That they were just a side-effect of the drug, and that it would pass. Other strategies were mostly ways to distract myself, like playing with the dog, watching DVDs. Another important strategy was getting empathy from my Nonviolent Communication (NVC) community.
- I reduced the drug in the smallest increments I could and much more gradually than seemed necessary.
- I NEVER cut or crushed the Depakote pills because I was on an extended-release formula (Depakote ER), and I had been instructed never got cut or crush the pills.
I was taking 500 mg twice a day in the beginning. Then I went down to 500 mg at night and 250 mg in the morning. I stayed at that dose for a couple of months. At first I had no withdrawal symptoms, then they would arise and peak, then they would fade.
Then I reduced to 250 mg twice a day, and stayed there a month or two. Each time after a reduction, I would have days or weeks without withdrawal symptoms, then they would arise and peak, then fade. I always waited to do another reduction until after I was feeling totally normal for at least a week or two before I reduced again.
When I got down to the smallest dose I knew about, it was still a pretty big dose — 250 mg — so I took one every other day for a couple of weeks, and then stopped. I had learned this strategy for going off of Prednisone. I recommend this strategy if you need to go off something for which you cannot take a very small dose.
How I Got Off Klonopin
After I got off Depakote, I wanted to go off Klonopin. After all, I had started taking Klonopin every day for migraine prevention, and I was no longer having chronic migraines! In fact, after I started my neuroplasticity recovery program, I stopped getting migraines altogether, which increased my desire to get off all unnecessary medications.
I had heard from other people how hard it is to get off Klonopin, so I was determined to go as slowly as possible. I wanted to be kind to myself. I also wanted to be kind to the people around me because I had learned that I was a difficult person to be around when my moods got really screwy.
When I started reducing Klonopin I was taking one 1 mg pill in the morning and one in the evening. I cut the morning pill up so that I was taking 3/4 mg in the morning and continuing to take the full dose in the evening. That was a 0.25 mg reduction.
In the beginning, I was reducing the dose by 0.25 mg (1/4 pill) every two weeks. I found that a couple of days after I’d reduced the dose, I would have anxiety most of the time, and it was very unpleasant! This rebound anxiety lasted anywhere from one to four weeks after the reduction.
I soon changed this strategy. This rate of reduction was too steep for me.
I decided I wanted to reduce the dose more slowly. I asked my doctor to prescribe the smallest dose pill, which is 0.5 mg. That way, if I cut a pill in quarters, I could reduce by 1/8 mg instead of 1/4 mg.
I also reluctantly decided to change my reduction schedule from two weeks to four weeks. At that time, I usually had the worst anxiety for one or two weeks, starting three to five days after the reduction. I wanted to have some time of normality (non-anxiety) after each reduction before I did the next one.
After I started my recovery from CFIDS, MCS, and chronic Lyme, I also exercised — swimming, yoga, and walking — and meditated to help with withdrawal. These strategies helped a LOT.
- Walking the dog was good because it was an hour of gentle exercise out in nature and interacting with my beloved dog. So I got a dose of dog love (oxytocin pump), a dose of nature, and a dose of exercise all in one. Also, the dog NEEDED to be walked, so it felt productive, too, and it was something I’d do even if I didn’t feel like it.
- Swimming helped because I LOVE swimming, because it was continuous exercise, because it was in a novel and relaxing environment (a pool), and because I could focus on things like my stroke, my kick, number of laps, etc.
- Yoga was particularly effective because it combines the positive effects of meditation, stretching, and exercise. Also, if I went to a class, I just had to follow along. I didn’t have to THINK at all. At the end of every yoga class, I always feel way, way more relaxed than I did in the beginning.
Eventually, the schedule I came up with was to reduce by 1/8 mg (1/4 of a 0.5 mg pill) once a month.
However, I did keep the schedule flexible. For one thing, there were differences in how severe or how long the withdrawal symptoms lasted. Some weeks, the anxiety only lasted seven or 10 days. But, if I was having a very stressful month — such as the month I got my driver’s license and was car shopping — the anxiety could linger for a month! Then I would wait for six weeks or even two months to do the next dose reduction.
Suggestions for Klonopin Withdrawal
- Adjust your attitude: This is a marathon, not a sprint. This is a long-term process of supporting your health and wellbeing. You support your health and wellbeing when you are KIND TO YOURSELF. You don’t get any points in life for suffering more, being tough, or going as fast as possible. Go as slowly as you need to feel OK.
- Get support. Tell your partner, friends, family, care providers or other people you TRUST that you are starting a long and gradual withdrawal process. Ask them to be supportive.
I find that people really appreciate it and find it helpful if you give them specific information about HOW to provide support because not everyone has the same idea of what “support” looks like.
ASK FOR WHAT YOU WANT. Say, “I would like a hug,” or “Can you remind me that this isn’t forever, and eventually I will feel relaxed and happy again?” Or, “When I’m feeling anxious, will you rub my back and tell me your proud of me?”Ideally, give people written information ahead of time, before you are in withdrawal, letting them know what you might experience and giving them specific suggestions or requests for what you will find helpful. You can send a group email to your supporters with this information so they can refer back to it.
- There is an excellent UK website on how to get off benzodiazepines. Their Klonopin withdrawal page strongly urges transitioning from Klonopin, which has high-dose pills and has a moderate half-life, to diazepam (Valium). It explains that diazepam has a longer half-life and you can get it in very small dose pills and in liquids, all of which allows you to withdraw more slowly and experience fewer withdrawal symptoms. I chose not to go this route because I had a bad reaction to diazepam when I tried it several years earlier. This does not mean the same would happen to you; I had bad reactions to most medications I tried over the years. I didn’t even tolerate antihistamines, like Benadryl.
- When you experience anxiety or other unpleasant symptoms, remember that THEY ARE NOT REAL. The thoughts and feelings are not really yours! They are just drug effects. Before the symptoms are bad, make a list of things you can do to connect with what is real and true when your perceptions are chemically altered. Reminders to put on your list might be things like, “This is a temporary state. I will feel better when I am done withdrawing from this drug.” “These people love me and want me to be well. They told me to call them if I’m feeling bad: [list the people].” “When I am having a hard time, I feel better if I do [activities that make you feel better.]” Keep this list somewhere easy to find.
- Reduce the dosage in as small increments as possible, especially as you get farther along. In the beginning, reducing by a small amount will be a smaller percentage change than as your dose gets smaller. In this “middle stage,” cut the pills into smaller doses, and you might also want to ask your doctor for pills in lower strengths, so you can cut some of the dosage even smaller. This post explains percentage reductions clearly.
- Give yourself time to feel “normal.” To do this, you have to go slowly and gradually and give yourself a “honeymoon” period before each new dose reduction. Ideally, you will want to give yourself a week or two of stabilization — a week or two when you feel NORMAL — at each dose before you reduce again.
- EXERCISE every day! If you have CFIDS/ME, you may think this is impossible. But if you have used or are using DNRS to recover from CFIDS/ME, the more you exercise, the better for your recovery as well as for withdrawal symptoms. Even if you can only exercise a little, it will help. Exercise is effective for several reasons: It reduces stress and anxiety, releases brain chemicals that make you feel good, such as dopamine and endorphins, and unless you are overtraining or getting too intense in your workouts, gets cortisol out of your system (the stress hormone associated with fight/flight and limbic activation) and improves sleep. Also, if you are focused on exercise, it gives your mind a rest from thinking about anxiety or other unpleasant thoughts or feelings.
- Do YOGA. I know I just said to exercise, but yoga is specifically shown to be calming and relaxing to body and mind, and you don’t need to go at it intensely or vigorously. You can even do it in bed. Yoga has specifically been shown to reduce cortisol. Yoga combines relaxed, mindful breathing with a focus on what you’re doing with your body, and gentle stretching and movement, which is healthy and feels really good!
- Meditate or practice mindfulness. It may be hard to meditate during the worst throes of withdrawal or anxiety, but if you practice meditation when things are a little easier, it will eventually help you to have more awareness and acceptance of mental and emotional states as just things you can witness that you don’t have to DO anything about.
One morning, as I was driving to the YMCA to swim, I was simultaneously aware of my body being awash in anxiety and also feeling really happy and calm that I was able to drive, that I was able to be out in the morning, that I was able to see the trees and the sky and the birds. These twin awarenesses were a gift from practicing meditation. It makes it much easier to deal with withdrawal symptoms when you can experience them as a phenomenon that doesn’t mean anything about you….Here’s a beginner’s guide to meditation. I found Metta (lovingkindness) meditation the easiest and most beneficial practice when I got into meditation. Here’s a beginner metta video. Or, here’s a good written beginner’s guide to metta. Some people prefer Vipassana (insight) meditation. Here’s a beginner’s guide to insight meditation.
- Be aware of, and adjust around, stress. My experience is that withdrawal-related anxiety was worse when something stressful was also happening. If you have something stressful coming up, hold off on your next dose reduction until it’s over. Or do your next dose reduction earlier, so the withdrawal period will be over before the upcoming stressful event.
You probably have more control over how much stress you have than you realize. For one thing, stress takes different forms — distress (unhappy stress) and eustress (happy stress). Any big change is stressful — moving into a wonderful new home, starting a relationship, recovering your health, having a baby, or getting a puppy are all wonderful and stressful events. Hold off on getting the puppy or planning your wedding until you are finished with withdrawal. It’s something to look forward to!
- Also, busy-ness and rushing cause stressful responses in our bodies. When my withdrawal anxiety lasted a month after a reduction, I decided I needed to lighten my schedule. Even though I love writing and my writing groups, I quit both of them until I was done with withdrawal. I added a one-and-a-half hour yoga class in one of the slots where I’d had a three-hour writing group. That was a really helpful change.
- You might think, “Work is stressful, but I can’t work less AND pay rent and feed my pets and myself,” but maybe there’s a food pantry you could use for a little while. Some animal shelters also donate food to food pantries or community organizations to help prevent pet homelessness. These are not permanent changes. These are things to do to ease up on your stress until you are done withdrawing.
One day, it will be over! You’ll be off the medications, and you won’t be having unpleasant side effects anymore.
I did it, and you can, too!
Right now I am newly off Klonopin and having the last of the withdrawal symptoms. Yay! Three weeks from now, I’m having a “happy rebirthday” party for myself because it will be one year since I started DNRS, which was the cornerstone of my recovery program. I expect to be done with the withdrawal symptoms by then, and I’m really looking forward to that!