Editorial Note: Courtesy of Fast Forward, here is a 12 month follow up to Olanzapine Withdrawal: Sally’s Story; some good, some OK and some awful.
Twelve months later, I continue to have problems with my hearing. The serious sensitivity to sounds has settled a bit – so I don’t jump out of my skin when a knife scrapes on a plate, or Rob, my husband coughs. However, it has been replaced by tinnitus and fluctuating “fullness” in my ears – which can be painful. The deafness in my left ear remains.
The distortions of sound continue – sometimes a music track will subtly shift into a different key – and once shifted that’s it. I can’t make it go back. Some tones and pitches remain permanently distorted, and painful.
Another curious sensory experience continues – listening to speech I hear sentences in rhythmic bursts. Like an enthusiastic, old ham actor, over accentuating his lines. Again once this starts to happen, I can’t make my brain iron out the rhythms.
Very annoyingly this has started to happen when I read. I am a fast reader – and don’t consciously “hear” what I am reading, but lately I seem to read in rhythmic bursts too – the text takes on a life of its own. Very difficult to describe. And horrible.
My hands and wrists and inner elbow joints continue to be acutely painful, particularly at night. Shaking them relieves the tingling. One neurologist thought it may be carpel tunnel syndrome. My gut feeling is that it is a peripheral neuropathy caused by olanzapine, plus maybe some rheumatism – but I DON”T KNOW!!! And probably never will.
The movement disorder in my right foot, unimaginatively but accurately called “moving toes and painful leg syndrome” was diagnosed by a neurophysiologist, and is now in my left foot too, although less badly. My toes move continuously, I have a crawling sensation up my legs, and the feeling of taking wet shoes off ice-cold feet which are coming back to life. So yes, they hurt too.
One of the first oddities of sensation I noticed, a couple of years before weaning myself off olanzapine, was a hot, heavy feeling in my right foot. I never thought to mention it to anyone. It has come back again – every so often, I get a hot flush in my foot.
Depressingly, the middle toes on my right foot have become rigid (despite moving) and won’t bend – which makes getting out of the bath surprisingly difficult. By the end of the day my right foot aches and tends to twist inwards. A neurologist who specialises in dystonia said that strictly speaking the toes and feet aren’t dystonic (I’m not sure why). She also said that any tardive dystonias would appear within six months of stopping the offending drug. Thinking about this I’m not sure where this information comes from. How did she know? And, I began thinking that if muscle and movement disorders can be tardive – why not other neurological damage caused by psychotropic meds? All unanswered questions.
My balance, and general clumsiness, are easier to live with – but I suspect that is me learning to adjust, rather than any objective improvement. I automatically compensate for things flying out of my hand – and am much more careful about picking things up and putting them down. Despite my GP maintaining there was no point in neuro-physio – it helped hugely. Exercising on balance bars and balls increased my confidence – as did the physiotherapists’ absolute acceptance of the balance problems. They also identified that I never moved my head and eyes either sideways or up – if I did, I fell over! Now I am aware of this, and that makes life easier. I practice my standing and balancing – and am trying-out walking outside without a stick. Takes a bit of confidence.
The acne mentioned back in the last post turns out not to be – now there’s a surprise. For the past six years I have had a mass of blackheads and whiteheads on my cheeks and chin – no angry red spots, just the bumps. It was incredibly unsightly. I finally mentioned it to my GP who promptly diagnosed acne, and prescribed a tetracycline antibiotic. I was surprised, as had never had acne as a teenager, or at any times of stress before, but dutifully swallowed the pills. No improvement after four months (but a very sore mouth).
At my check up with the gynaecologist, I asked him whether it could be a consequence of the hysterectomy (hormones and all that). No, he said firmly and peered closely at my face. “That’s not acne” he said and referred me to a dermatologist. She said she had only seen a similar thing when working in Leeds many years ago, near a chlorine factory. Given that I hadn’t been washing my face in bleach, her best guess was – drug damage. Ho hum.
She could find no link with olanzapine. She has treated it with a topical cream and two sessions of surgical extrusion. This was eye-watering but has been successful so far. All for a clear face.
The temperature dysregulation has not got worse – but I make sure I don’t get too hot, wear layers that can easily be peeled off, sleep with a fan at night, and put one on my desk for a blast of cold air. I wondered whether I really got hot, or whether it was a perceptual distortion. After my granddaughter had been staying, and a thermometer was hanging around, I stuck it in my mouth when I felt unbearably hot suddenly. Bang! The light monitor turned red. We cancelled a trip to Greece because I knew I would not manage the heat. I have calculated that a temperature of around 20* suits me best – anything either side gives me problems. I struggle with continual thirst – and now find that taking a few sips of water every 15 minutes or so seems to keep me hydrated better.
I have got so fed up with being continually told I am diabetic. I wasn’t – I had drug-induced hyperglycaemia, which settled as soon as I stopped the olanzapine. But NO-ONE LISTENED. Despite the evidence – a blood sugar reading that never went above normal all last year. So I’ve given up arguing about it, as it’s a battle I’m never going to win.
I am still as fat as I was. That metabolic effect has not been reversed, unfortunately, despite a healthy diet. I knocked off the booze last autumn – a stiff brandy helped the discontinuation symptoms and while I was taking medication, it dampened the anxiety and akathasia. But I reckoned I was better off without it.
The spells of acute malaise, whatever you care to call it – there are no words, really – have gradually declined in severity. Or, I’m not so frightened by them and have learnt ways of managing. Distraction works sometimes – talk, do an email, engage the brain. Resting with a hot water bottle and listening to the soothingly hoarse tones of old Leonard C. And when it’s really, really bad, just sweating it out. Literally.
But, I feel wiped with exhaustion all too often. A sort of profound, aching, nauseous fatigue. If I have something interesting to do I manage at the time – then pay for it for days afterwards. Sometimes I can work through it – make myself get up and make tea, put a wash on, walk round the garden. Sometimes I can’t. Everything fluctuates wildly.
The most volatile thing of all has been my temper. The bad temper and irritation have been in some ways the worst aspect of discontinuation because it affects the people I love. It got so bad that I went to a Relate counsellor, because I thought I was being emotionally abusive to R; a dear, kind, patient man. She has helped me no end – having someone to talk to, learning techniques for handling anger. She has been fascinated by what she has learnt about the effects of psychotropic drugs – and appalled.
How much is due to the strokes that were discovered in 2012? Again, I DON’T KNOW! The neurologists I saw were adamant that the deranged balance was not due to the small infarct in my cerebellum. The audio-vestibular consultant minutely examined my brain scan and was certain that neither the balance problems, or the hearing peculiarities could be attributed either to anything wrong with my inner ears, or the sizeable stroke in the front temporal lobe. “It’s a neurological problem” he said.
I was put on warfarin for the heart arrhythmia – getting to constant blood tests was a nightmare. I did my own risk/benefit analysis and stopped it. My GP prescribed a new wonder drug, Pradaxa, which needed no blood monitoring. “I’m only giving it to you because you’re non-compliant” he said curtly. It never occurred to me (unbelievably) to ask about side effects, feeling deflated by being called non-compliant…but after ten days of indigestion and appalling flatulence I googled Pradaxa to see whether it could be the culprit. It probably was – but more scary was the fact that there was no way of reversing a major bleed and that the drug was the subject of numerous lawsuits in the US. A fact that my GP had omitted to tell me.
I contemplated sending him the GP good practice requirements for informed consent to treatment, but chickened out. And stopped taking it. I try not to think about the atrial fibrillation and mitral valve problem – or whether they will get worse over time. Or the possibility of a further stroke. I have become laissez faire about what might happen in the future, and sceptical about tick box prescribing of preventative medication.
So, no warfarin, no statins, no beta blockers. My cholesterol level has come down since stopping the olanzapine, and my blood pressure and heart rate have gone down significantly.
If I’d known what I was going to go through, I wouldn’t have contemplated stopping the olanzapine despite rapidly declining physical health and being a zombie. I was able to taper off without problems – the problems started after I’d completely finished.
I’m only 59. My health is poor. I often ponder the fact that people with serious mental health problems die early. When I first got depressed back in 1998 I assumed this was inherent in the illness – now I think it is the treatment…I have lost sixteen years of my life – when I might have been at the peak of my career, economically productive, paying taxes, and supporting my children. I lost my career, and eventually R lost his.
For most of 2013, doctors kept me awake at night. A combination of unspeakable frustration and anger. I changed my GP and, like the Nearly Invisible post about statins part of staying healthy for me is keeping well clear of medics – particularly GPs – as far as possible.
I despise neurologists more than psychiatrists, which is saying something. I found their inability to think outside the box, their profound ignorance about withdrawal and the effect of psychotropic meds on the brain, so depressing and frankly negligent. The very first one I went to see said that olanzapine couldn’t be the cause of my problems because “It’s a mild drug with no side effects”. He is widely regarded as the best neurologist in this area and an expert on movement disorders.
I have thought long and hard about the ethics of treatments which do so much damage and how this relates to the Hippocratic Oath’s injunction to “Do no harm”.
I have been frustrated by the inability of the English legal system to provide a remedy for harm caused. There is no group action tradition, the erosion of legal aid means law firms will only take on the most cast iron cases, and where causation is complex, no one will go near it. The Seroxat litigation looks like it has failed. I spoke to the solicitor leading the action, and she said that should it fail she feared that would be the end of any legal curb on the drug companies. There was a weariness in her voice.
I have felt more alone during the past 18 months than ever in my life. At times that has come close to despair, but also a perverse determination not to give in. Some of the despair comes from having no voice. Challenges to the orthodoxy are so fragmented – and there seems to be no way of gathering them together, working to really tell the world what happened to me and thousands of others.
And if I have no voice – what about all those still locked in a world where they struggle to stay awake, think through the fog, cope with obesity, drooling, slurring and collapsing physical health. Who speaks for them? No-one. It slightly pisses me off when four MPs get up and say they have mental health problems and are applauded for their astounding bravery. It is the people who cannot do that, because no-one would listen to them, who are brave.
I feel though, that out of the intense heat of mental illness and its aftermath, a small nugget of gold has been forged; my true self. I couldn’t care less what people think of me. I wear bright colors, dyed my hair blonde, had my teeth repaired, and started learning print-making in a small art workshop. Making a print of some medic who particularly annoyed me has been extremely therapeutic – when we have our end of year show, I am thinking of sending an invitation to the subjects themselves…..
And, so far, my mind seems to have come through. Even my legal knowledge is there – in fact it seems to have gently matured over the bleak years of nothingness. I have no optimism that it will stay that way – dementia would seem to be a short step away, judging by the literature. But for the time being I can think and reason and debate and love and that is enough.
Two things were, in the end, the only way I could think of to leave a constructive legacy. I have donated my brain to the Royal Neurological Society. It is entirely possible that it will end up in the hands of Big Pharma research – but I can’t prevent that.
And I am writing a book. I wish there was more I could do. I wish I could get those of us who have been so dreadfully damaged together to share experiences, help each other and make a very, very big noise.
Continued in Olanzapine: Still Treading Water.