The Insomnia Diaries

Insomnia is a huge problem.  Insomnia triggered by the drugs supposed to treat it is another huge problem.  A RxISK post featuring enduring sleep difficulties after antidepressants has been very heavily accessed and commented on. Miranda Levy puts all three sleep problems in the frame in a way that all too many will recognize. 

Eight weeks after I stopped being able to sleep, I found myself in the consulting room of a psychiatrist. It was autumn 2010. I was already on the sedative antidepressant trazodone, and had been on a two week course of temazepam – a benzodiazepine hypnotic which my family doctor had rightly stopped prescribing. Neither drug was working for me.

I was so exhausted I could barely speak. The consultant listened with sympathy to the story of how I’d discovered my husband wanted to call time on our marriage, and how my distress had plunged me headlong into disabling insomnia. Just to make sure, I begged him to prescribe me something that would ‘buy’ me some rest. I was practically hugging him round the knees.

The psychiatrist agreed that I needed a bit of extra help, so ‘upped’ my antidepressant and prescribed me a ‘day time’ tranquilliser called clonazepam – which he said would help me feel calmer and more able to fall asleep.

Little did I know that I had taken the first step into my ‘Psychiatric Safari’, a ten-year voyage around drugs with seductive names like Seroquel, Ambien and Lyrica that would lead me to rehab, two psychiatric hospitals and a sleep clinic.

There was no discussion of clonazepam’s potential dangers, or of how long I was to stay on it. As a journalist and reasonably informed person, I knew that Valium – a related drug – was largely seen as a Bad Thing. My mother had been dependent on temazepam for years. But to be honest, at that point, I was so tired I really didn’t care.

The clonazepam initially bought me some snatched periods of sleep, and a pleasant fuzziness in the hours in between. But this relief didn’t last. At my first follow-up, the consultant increased the prescription. I think he then upped it again over the phone (my memories of that time are a bit blurry).

Sinking

I retreated up to my room, where I was to spend much of the next eight years. For most of the day I was on, or in my bed, ‘trying’ to sleep, listening to daytime radio, or Googling aimlessly on my laptop. I occasionally made excursions downstairs to eat. Despite all the pills I was taking, I was still sleepless. Weeks turned into months, which turned into years. I lost my job as the editor of a top parenting magazine.

As I went deeper into the system, my diagnosis changed from ‘adjustment disorder’ to depression, to treatment resistant depression, and generalised anxiety disorder. All I could do at my many doctors’ appointments, was babble ‘I can’t sleep’ on repeat.

There was barely any therapy, but there were pills – lots and lots of them. My doctors opened the BNF and out came the antidepressants: citalopram, venlafaxine, mirtazapine. An SSRI here, a tricyclic there. Benzos and antipsychotics: olanzapine, risperidone. I was often whipped off one and put on another, often overnight, with no taper, or pause between them. Drug cocktails were mixed, my pharmacy was poly-ed.

I was so exhausted and miserable that I took the pills, swallowed and repeated – even though I knew deep-down that this was a mess.

And, no, I didn’t sleep, nor did I feel any happier. Instead, I got fat, my hair and skin became as dry as straw. My career, my friends, my family – I saw them all slip away. It’s perhaps unsurprising that at times, I felt suicidal, at one point, I started researching ‘methods’ online. I took a couple of weedy overdoses, was checked over at A & E, and sent home again.

I was told I needed ‘complex care’ and was briefly the owner of an Unstable Personality. One private psychiatrist wondered if I might not have schizophrenia. (He called it a ‘dopamine imbalance’, but I knew what he meant. Schizophrenia?

Rock Bottom

Eventually, I realised that the pills were doing me no good at all. Not only was I not sleeping, but I felt spaced-out, 24/7. The most scary thing was feeling emotionally ‘flat’ – not caring about anything, or able to feel love – even for my pre-teen children, who thankfully were being taken care of by my ex, with the help of grandparents.

I knew the benzos in particular were a problem, because I was now needing to take more of them. My growing dependency meant that I’d finish the box too early, and by the time of my new weekly prescription, was starting to feel sick, dizzy, and incredibly agitated.

On Monday mornings, I’d be waiting outside for the chemist’s to open, hopping from foot to foot, and praying the pharmacist hadn’t been held up by traffic. I felt like a junkie.

I decided that all my problems were down to my dependence on these drugs. Twisted logic in my brain told me that if I ‘normalised’ my brain chemistry, I might ‘reset’ and start to sleep again.

I decided to go visit my local authority’s Addictions Service. The addictions consultant and I worked out a gradual reduction programme on the lines of the Ashton Manual where I cut back my pills over a period of time. The doctor switched me to Valium – a drug with a longer half life, which was supposed to be easier to ‘taper’.

As I left the hospital, I turned to look back. What a bizarre situation this was. I was seeing one doctor to come off a drug, while two floors above, lurked the doctor who put me on it in the first place.

I tried to follow the consultant’s reduction plan, but I was just too weak to keep going by myself. So, maybe, I thought, I’d pay some professionals to do it for me. Maybe I should go to rehab.

I started to search for units that offered help for prescription drug addicts. (NHS in-patient help seemed non-existent.) There was a dizzying array of private clinics and I really had no idea how to choose. Some clinics admitted they didn’t have the medical staff required to oversee my withdrawal safely. But I found one clinic within striking distance of my home that enthusiastically reported success in bringing people off benzos.

Relieved, in October 2014 I decided to book myself in for a standard 28-day stay.

The clinic was set up along the 12 step programme – it was in the rules that there were five meetings a week: a mix of AA and NA. ‘Really?’ I said ‘But I’m not an alcoholic or a drug addict’. ‘It doesn’t matter what your poison is,’ said the counsellors. ‘You are still an addict.’

They didn’t care that my ‘poison’ was Valium, which I did not take for kicks, or to get ‘high’. (I was the only benzo patient there). Nor that I was prescribed my tablets by a doctor, as opposed to buying them off the street from a drug-dealer, and that perhaps my treatment needed a different approach.

So, the month passed, with group therapy, hugginess, Affirmations and meetings. I was reduced from 50mg diazepam to 20mg, in the space of a couple of weeks.

As the weeks progressed, I started to feel terrible. Unlike everyone else at the clinic  I was getting worse, not better. My muscles were locked and achy. l was antsy, deranged, moving from place to place, room to room, running up and down the stairs. I just couldn’t ‘be’ with myself. It didn’t t occur to me that this might be down to the benzo withdrawals.

(I now keep reading about a condition called akathisia: defined as ‘a movement disorder characterised by a subjective feeling of inner restlessness accompanied by mental distress and an inability to sit still. Perhaps this is what happened to me.)

By the middle of November, down from 50mg to 20mg diazepam, I was discharged from the clinic and dropped at my local A&E, where I literally begged the doctors to take me in to a psychiatric unit. Not much happened there, after five days or so, I was deemed something of a time-waster and was immediately kicked out.

So, I decided to take control and come off the remaining benzos myself – way too quickly, in retrospect. From this point on, I was pretty deranged. I could no longer speak in full sentences, just stuttering repetitively. I even starting hitting myself in the face, so violently, that I detached a retina and had to have three eye operations.

My family paid for me to attend private psychiatric clinic, where more pills for the long-term mad were thrown at me.

I remained in a frightful state for over two years, but at the start of 2019, things started gradually to improve. One early moment of ‘independence’ was declining to take lithium – which a new, local psychiatrist thought might be an answer. ‘Thanks, but no thanks,’ I said. But I had to take one for the team, so I agreed to start pregabalin, which apparently had ‘no side effects.’ (Ha!) I sneakily came off olanzapine, which I found surprisingly trouble-free.

Coming Back

Gradually, I started to improve, sleeping a couple of hours a night, which became three or four as I resumed exercise, using my brain and following the ideas of CBTi (cognitive behaviour therapy for insomnia).

Weighted blankets have been a ‘thing’ in the States for a while now. They are marketed as an aid to conditions including insomnia, anxiety, ADHD, and autism. The sales pitch is they work through imitating ‘deep touch pressure’ (DTP), mimicking the feeling of being held, or hugged’.  Whatever, mine helps.

I learnt the value of lists. Completely one for the next day before going near the bedroom.  And getting up and out of the house early. See tales of an insomniac.

With a tiny bit of sanity restored, I slowly began reengaging with the world, seeing friends for the first time in years. These little things were like a virtuous cycle: the more I did, the more I slept. I soon got up to four hours, and felt human again.

Finally I started working again, writing for newspapers and magazines, particularly on the subject of mental health. The more I researched and read, the clearer it became to me that the worst of my ‘illness’ was because of ‘post acute withdrawal’ from the benzos. The on-off-on again approach that my doctors had to antidepressants and antipsychotics can’t have helped, either.

June 2021

I’m still on trazodone and zopiclone. I plan to taper those (slowly!) when I’ve finished my tough pregabalin battle. In two years, I’m down from 250mg to 10mg, using the liquid version for this last stretch. The final ‘jump’ is proving really tough – I’ve tried to come off twice, but had to give up because I felt so unwell – so I’m decreasing one raindrop at a time.

I’m left with my drugs hangover, as well as lots of thoughts and questions for the psychiatric system, which put me too many pills too easily, and for too long. Then withdrew me far too quickly. For the past year, I’ve joined the voices who demand that family doctors and psychiatrists think twice before putting an emotionally distressed patient on a drug that a) they might not need in the first place and b) might make things worse. Much worse.

It’s also clear there should be specialist services for prescription drug dependency, and that family doctors and psychiatrists need to up-to-date education on the dangers of these drugs and how to withdraw people safely. There has to be far more ‘talking therapy’ and social prescribing – exercise, community, volunteering.

As I write, things are beginning to improve in this area of health policy. And, amazingly, my own life has improved beyond recognition. I feel happy, and strong. I’m off most of the pills – though not all of them – but I’m taking that slowly: one battle at a time.

I sleep six or seven hours a night, now. You wouldn’t think I was the same person as two and a half years ago.

Most of my friends are back – and some new ones to boot – and I’m forging a new and wonderful relationship with my children, who are now in their mid and late teens. My divorce is almost finalised, and I have a nice new boyfriend, who lives in New York.

Yes, there is always the slight shadow that something could go wrong again, and I’ll be plunged back into the maelstrom of insomnia. But this much I’ve learned: If my health suffers in the future, I will not be returning to battle the big pharma pills on the Psychiatric Safari.

The Insomnia Diaries: How I Learned To Sleep Again by Miranda Levy (Aster, £9.99) . www.octopusbooks.co.uk