Thinking of taking a benzodiazepine to treat MdDS? Don't.
Up until a couple of months ago, if someone asked me what having Mal de Debarquement syndrome was like, I probably would have replied with:
Mate, it’s a walk in the park.
Why the sudden change in sentiment? Because now I feel as though I really know what hell is. It’s called Benzodiazepines.
On the advice of UCLA neurologist Dr. Yoon Hee Cha, I have been taking clonazepam (aka Paxam, Rivotril, Klonopin) for the past two years to assist with my MdDS symptoms. The theory was, the sedative quality of this drug would calm down the suspected ‘over-activity’ in my brain that was causing the dizziness.
But now we know MdDS isn’t an overactive brain. It’s a miscommunication between the ocular and vestibular systems and can be fixed with exercises similar to physiotherapy. So in essence, the clonazepam isn’t really doing anything for my dizziness.
What it has done though is cause insomnia, anxiety, a feeling of emptiness and sadness and issues with my dear old bladder. I only twigged to this a couple of months ago when, after years of sleeping like a normal person, I started waking early in the night to go to the toilet. Something I’ve never done before. The doctor said I had a bladder infection. I took his nasty antibiotics. The sleeping got worse.
I know now this is because antibiotics react with benzodiazepines and can cause acute withdrawal symptoms. But a couple of months ago, I had no idea what was wrong, although I felt, in my waters, that the bladder infection wasn’t causing my new symptoms of sleeping difficulties and mood changes.
After waking up at 4:30am or some rude hour for perhaps the second month in a row, I suddenly had an epiphany. I put my doctor Google fingers on the keyboard and typed in ‘Clonazepam addiction, Clonazepam tolerance and Clonazepam side effects’. This is a very condensed list of symptoms I found:
Cough, difficulty with breathing
Dizziness, ear congestion
Loss of interest or pleasure
Loss of voice, nasal congestion
Shakiness and unsteady walk
Sleepiness or unusual drowsiness
Trouble with concentrating
Unsteadiness, trembling, or other problems with muscle control or coordination
Bladder pain, bloody or cloudy urine
General feeling of discomfort or illness
Irregular, pounding, or racing heartbeat or pulse
I rang my Aunty who is a GP in Cairns. I asked her if the Clonazepam was, to put it plainly, making me insane. She said people can become tolerant to, or dependent on Clonazepam and other benzodiazepines and one of the common signs is insomnia.
After hearing that, I wanted to get my bottle of Clonazepam and set it on fire.
I would say I’m a fairly stoic person. I can perform under a huge amount of stress, I can push through grief, I can continue to function as a largely normal twenty-something despite having a rare, dizzy condition. But there are two things I definitely cannot cope with: a lack of sleep and a lack of food. Some people get grumpy, some get a bit depressed. Me? I go your full feral, tearing-hair-out, crying, raging lunatic.
So a drug that causes insomnia is definitely not one I want to take anymore. Problem is, you can’t just stop taking benzodiazepines cold turkey because the withdrawal symptoms can be even worse than the side effects of the drugs. So, once you make the decision to quit a benzo, the doctor will put you on a taper plan.
Reduce current 0.5mg dose to 0.25mg for two weeks. Then (as benzo withdrawal patients say) jump off.
I was fine with the 0.25mg but when I ‘jumped off’ I experienced the worst insomnia of my life. Four nights of minimal if any sleep.
I know it doesn’t sound that bad. People are starving in the Sudan, others are being beheaded in Syria, some people have completely incurable diseases, have cancer, half a leg, some people are vegetables and some have had all their children die. I don’t want to make those situations sound frivolous with my four nights of insomnia. But what I will suggest to you is this: there is something extremely terrifying about battling your own mind. Insomnia does that to you. It makes you irrational, depressed, anxious and worst of all, if you’re alone while you’re awake in the middle of the night, you start to get scared of yourself.
A crumpled, broken, whimpering mess, I dragged myself to the doctor, again. He told me it takes 10 days to eliminate Clonazepam from your system and that’s why I wasn’t able to sleep. My brain was screaming for the drug. It wouldn’t rest until it got its fix. He said the insomnia would only last for the 10 days it took to eliminate the Clonazepam, I told him I’d rather die than be awake for 10 days straight. So he gave me Stillnox, claiming it didn’t affect the same area of the brain that the benzos do (I have, however, since read research that Stilnox, also known as Zolpidem, works on the same receptors of the brain.) The doctor told me to take Stillnox to help me sleep while my body got rid of the Clonazepam.
So I did. I expected the Stilnox to wipe me out. I mean, all those Aussie swimmers were sleep walking on it, so it should be powerful enough to konk out a little, non-athletic, person like me. Right?
I lay awake, my chest constricting, my body paralysed. My limbs might have been lead-like, but my mind was rearing to go. You could have asked me to write a thesis on the benefits of green smoothies and yoga and I could have done it in a flash (with the help of some eye-controlled assistance technology). It’s a sensation I never want to experience again. I imagine it is not dissimilar to being in a vegetative state.
Completely dissatisfied with my own doctor’s advice, I again rang up my Aunty (the GP). She said a lot of people experience this ‘sleep paralysis’ with Stilnox and that I may have come off the Clonazepam too quickly. She suggested I go back to 0.25mg and taper off more slowly. So I did. That night I took half an orange pill and woke the next morning at 8am. The longest sleep I had probably had in two-months. You would think it would make me feel better. But it didn’t. I started getting anxious about going to bed.
What if that good night’s sleep was a one off? What if I don’t sleep tonight?. Will I ever be able to sleep without drugs ever again?
My doctor Google habit spiked. I was on my phone every spare second, researching Clonazepam withdrawal, coping strategies, I signed up for a benzo withdrawal support forum. These patients said they had only slept for twenty minutes in the past 6-months! I slept fairly unsoundly for the next couple of nights. Had another all-nighter. Decided to go to my parents house, get some emotional support. While there, I was able to sleep a bit. But I felt as if my ability to sleep was perched, precariously, on the edge of a high rise. One slight wind shift, and it would plunge to its death. My mental state was similarly fragile.
Then just two nights ago, while back at my own house, I had another night of insomnia. I didn’t drift off until 5:00am (after my psychologist Uncle rang me at 3.30am to give me some relaxation techniques). I only slept until 7:00am. On two-hours of fitful sleep, I went to work the next day feeling like a stranger in my own body.
That afternoon I went to a different doctor. He was really good. He sat patiently through my hour-long investigative-journalist style interrogation, where, armed with months of Dr Google research, I shot out words like GABA-receptors, nor adrenaline, melatonin, protracted withdrawal. I made him draw me diagrams of neurons, made him explain, in full scientific detail, what benzodiazepines do to your brain and why I’m having trouble sleeping. He drew the diagrams, answered my questions and asked me if I was a science student. ‘No, I’m a lot worse than that’, I said.’ I’m a journalist’.
He then recommended I switch to Valium (which has a longer half-life than Clonazepam but is shorter acting, it is also a lot less potent. 0.5mg of Clonazepam is the equivalent of about 10mg of Valium) and taper about 1mg every two weeks. He told me it could take up to a year to completely get off the drug. He also wanted me to go on an anti-depressant to give me a better chance of ‘succeeding’ with getting off the drugs, to stop me from feeling ‘fed up’ with the withdrawal symptoms.
Unsure about switching to Valium because of the longer half-life, I reluctantly signed his drug withdrawal contract and took my new prescriptions home. I told my Aunty about this different doctor’s new taper plan. She strongly suggested I stay with her formula. She said she and this new doctor were on the same wavelength, but she reckons she can get me off Clonazepam faster and with less side effects.
Her plan is to stay on 0.25 mg of Clonazepam for another week, then go to 0.125 mg for two weeks. During this time I will start a new medication called Valdoxan, which is supposed to assist your brain in producing the sleep hormone melatonin. With her plan, I would get off the Clonazepam in a couple of weeks and shouldn’t be walking around strung out on Valium all day.
I’m starting the Valdoxan tonight, so I’ll keep you posted. I am also on an out-patient herbal withdrawal program called ‘The Road Back’. I’ve been on it for about a week and I have noticed my anxiety about sleeping is better. My Uncle, the kind psychologist who helped me sleep that other night, has also been a huge support! (Pretty handy having your own medical team in the family hey?)
Anyway, in the meantime, can I strongly suggest if you have MdDS and are thinking about taking a benzodiazepine to assist with your symptoms, just don’t even go there. I think there are better ways to manage your anxiety about having this conditions, and really, we don’t need to worry anymore. Researchers know that MdDS exists now. Sufferers aren’t being told they have depression or the dizziness is ‘all in our heads’. There’s even drug-free treatment. That’s the treatment I’m all about.
While my withdrawal is by no means easy, it is a lot easier than some other people have had. People can develop tinnitus, chronic pain, suicide-ideation, a doctor even told me one of his patients who was trying to come off lorazepam (another type of benzo) started hallucinating and saw devils eating her children in the car.
These drugs are scary as all hell.
The doctors aren’t even sure what brain receptors benzos work on. That’s why it’s so hard to get off them. I’ve read it’s easier to withdraw from heroin than it is from a benzo. Thankfully, certain benzos, including Clonazepam, are now being made ‘restricted drugs’ in Australia – meaning it’s a lot harder to access them. I wish that rule had been in place two-years ago when I went to the doctor and was simply told, ‘oh Clonazepam CAN be habit forming, but you’ll be fine, here have a low dose of 1mg.’
So this is my new challenge. Lucky me. But just imagine, when I conquer this, well there won’t be much I can’t do. Childbirth, Chinese Water Torture, sitting on a nest of bull ants – bring it on.
janainaart
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