Belfast Telegraph

Friday 11 July 2014

The clock-watching, the exhaustion, the dread... the hell of insomnia

Stephanie Bell revels how for years she has relied on pills to cope with her sleeplessness, and issues a heartfelt appeal to doctors to reconsider withdrawing them

New evidence that sleeping pills are addictive and possibly linked to Alzheimer's means doctors are now cutting back on issuing the pills
New evidence that sleeping pills are addictive and possibly linked to Alzheimer's means doctors are now cutting back on issuing the pills

For as long as I can remember I've had insomnia and relied on sleeping tablets to get what passes for a decent night's sleep.

I have always struggled with the fact that I need medication and, up until today, only my close friends and family knew it — but the awful reality for me is that without it, sleep just doesn't happen.

I've tried it all — hypnotherapy, lavender pillow spray, lavender baths at bedtime, changing my mattress, cutting out food in the evenings, relaxation techniques, herbal remedies, getting up if I don't fall asleep after 20 minutes, making sure my room is not too warm or too cold, getting up at the same time every morning (even at weekends), the list goes on...

Nothing works — except the little white pills prescribed for years by my GP but now it seems they are being taken from me.

I don't want to be dependent on any drug to get to sleep but I'm now being given no choice as GPs are under pressure to wean people off them.

New evidence that sleeping pills are addictive and possibly linked to Alzheimer's means doctors are now cutting back on issuing the pills.

One in five people suffer from insomnia. Last year in the UK 50m prescriptions for sleeping tables were issued.

It's a staggering statistic. Millions are suffering from a condition that denies them the most fundamental health need — restorative sleep.

I worry about the potential for addiction. I hate the fuzzy head the next morning. Despite sleeping for eight hours I still never feel refreshed. I fear the long-term consequences.

But, no matter what the frightening downside to sleeping pills, they save me from a torturous night of anxious clock watching and panicking about how I will get through a busy day with no sleep.

I understand it's a vicious circle — panic keeps me awake and being awake makes me panic — but try as I have, I don't know how to stop it.

If a Genie was to pop up and grant me a wish I wouldn't ask for riches, I would ask for the gift of being able to enjoy a night — even one, or a few hours — of natural sleep.

My insomnia was put to the ultimate test when I became a mum eight years ago. My poor son spent his first months with undiagnosed reflux which woke him and me up every half hour almost every night — for six months.

I don't recall him ever sleeping in those first months for longer than an hour. I became such a regular in my local GP surgery with my sick son that I'm convinced the reception staff thought of me as a neurotic first time mum.

Worried sick and with no answers, I booked a private consultation and my son's severe reflux was finally diagnosed and mercifully he was given the help he needed.

His sleep had been so badly disrupted by then that he was five years old before he finally slept through the night for the very first time.

Those first months of his wee life gave me a glimpse of why sleep deprivation was a popular form of torture.

I was so physically and emotionally exhausted that I would snap at anyone who dared mention that they were tired. I believed no-one — apart from me — knew what it felt like to feel truly shattered.

I had great support from family and friends who stayed over from time to time to save my sanity.

On one of these precious nights, when my friend was selflessly sacrificing her sleep to look after my son while I got the rest I needed, I crawled gratefully under my duvet only to discover that I had no sleeping tablets.

I was so utterly tired in mind and body that I was convinced I couldn't get through another minute without at least a few hours of uninterrupted sleep.

Without the tablet, I never slept a wink.

It's a night that still haunts me eight years later and I've no doubt it plays a part in my fear of not sleeping without a tablet.

I envy anyone who can grab 40 winks during the day.

Without sleep, even the simplest of daily tasks become a challenge, never mind having to look after a child, a home and complete a full day's work.

I'm not alone. There are millions like me, so why is there no help other than medication that is now regarded as so potentially dangerous that doctors don't want to prescribe it?

I know people who will struggle for weeks with poor sleep before they would consider a pill, but unfortunately I can't.

I was informed last month via a letter from the GP who first prescribed the medication many years ago, that in an effort to get me off the tablets, I was getting four less this month and I was to try and sleep without one for four nights.

Accompanying the letter was a list of tips to help me, every one of which I have tried and will try again and keep trying.

I don't want to be on sleeping tablets for the rest of my life, yet I can't lie awake either, and I do understand why GPs are under pressure not to issue them.

At the moment, with no support, no treatment and no cure for insomnia, all I can do is worry even more about the sleepless nights that lie ahead.

Christine Kelly (38) is a childminder and lives in Belfast with husband Damien and their children, Alex (8), George (5) and Ava Grace (3). She says:

My sleeplessness started almost exactly six years ago. I was about four months pregnant with George when I heard a noise in the night. I wasn't particularly worried so I didn't wake my husband. I got to the top of the stairs to discover there was a masked man making his way up towards me, and I could hear someone else in the kitchen. I just froze in terror.

They were looking for the keys to our cars, as we later found out, but at the time I didn't know what they were there for. Alex was just three at the time and all I could think was that we couldn't defend ourselves. It was terrifying. When the man saw me at the top of the stairs it didn't put him off -- he kept ransacking until he found my car keys and the other man found Damien's in the kitchen and off they went in the cars.

After it happened, I started having panic attacks in the middle of the night. Damien would have to drive me to my mum's house in Ballygowan because I couldn't sleep in our home. I would wake up in the middle of the night and have to leave. I can remember once driving to a McDonald's car park in the middle of the night and just sitting there in the car.

I did go to the doctor but because of my pregnancy I couldn't take any medication to help me sleep. For the rest of the pregnancy I didn't sleep, and when the baby was born, I didn't get much sleep then either. I started getting quite depressed over the whole thing. I lost lots of weight and was weepy and anxious all the time. I couldn't even make decisions over anything.

I can remember standing in the supermarket not being able to decide which brand of bread to buy. It was a horrible situation.

I tried all the natural remedies like hot baths and lavender, staying away from computer or television screens before bed -- all the usual things people advised. My doctor put me on a waiting list of cognitive behavioural therapy (CBT) and in the meantime prescribed diazepam, but it didn't do me any good.

Eventually, I started on a course of CBT, which did really help me. It stopped me having panic attacks and feeling anxious. Before that if I was in the house during the day and needed to go upstairs I would set the alarm downstairs just to feel safe. The CBT was very effective in helping me deal with that. The problem was, it didn't do anything for my sleeplessness. I would fall asleep for an hour then wake up and stay awake for the rest of the night.

I went back to the doctor, who prescribed a drug called Quetiapine. He told me it wasn't addictive and it actually worked, and for the first time, I was able to sleep through the night. The only thing was that I would have a bit of a sleep hangover in the morning.

I've tried a few times not to take the medication but when I do, I just end up lying awake. I don't have any other options. My doctor is happy for me to continue with the medication, as it's not addictive. but it has now become a habit for me.

At the minute, I think it's a lesser evil for me to have a sleep hangover during the day, as I can just get over that.

It would be far worse not to sleep, so I'm resigned to taking the drug."

Hugh McCloy (33) works as an administrator for a coach hire company and lives in Moneymore. He has one child. He says: I stopped sleeping in 2008 -- before that I hadn't had any trouble getting over, but a big event in my life changed things.

I found I would just lie awake at night -- if I was lucky I would get somewhere between three and five hours of sleep. It's difficult to deal with, because you feel tired all the time.

I went to my GP who wanted to prescribe me either anti-depressants or tranquillisers that would knock me out.

I was unhappy at that point, but I wasn't depressed and I'm still not. I'm a father, and taking anti-depressants wouldn't have been a very good idea when I was looking after my daughter.

I felt that doctors didn't quite know what to do with me. They can treat people who are depressed but when someone just can't sleep, then they find it difficult to prescribe a cure.

It's been the same ever since 2008. The most sleep I get in a night is five hours, but it can be much less than that.

I've tried everything I can think of, from running for miles, to taking natural remedies. There is a three-mile mountain course close to my house and I can run that no problem.

I also play Gaelic football at senior level, so the problem certainly isn't that I don't get enough exercise.

I did go to counselling, but that didn't have much effect on me either. I've even been to two homeopaths.

There's no point in me going to bed before 2am, as I'll just lie there.

The biggest change to me since I stopped sleeping is that I used to weigh around 12 stone, and my weight now sits at around 10 stone.

I can't keep weight on and I get mixed opinions from medical experts about why that is. Lack of sleep hasn't affected my personality much. I'm not bad-tempered or snappy and I can concentrate on work, but I can't sleep. I just feel tired all the time.

The worst time is bedtime. When you go home in the evening you're supposed to be able to relax and wind down for sleep. Instead, I sit there and I start to dread it, wondering how I am going to get to sleep -- am I going to go to bed early and just lie awake or should I stay up into the small hours and hope that gets me tired enough to fall asleep.

It's a little lonely because you feel like no-one else knows what you're going through. Most people look forward to going to bed but for me, it's a lose-lose situation."

Desie Smith (46) is a graphic designer and lives in Glengormley with his wife Sandra and their five children. He says:

I was diagnosed with sleep apnoea about a year ago. I actually went to an ear, nose and throat unit because I was snoring so badly. They referred me to the sleep clinic at the City Hospital, where they told me what was wrong.

Sleep apnoea is where your airway shuts down and you stop breathing during your fourth or deepest stage of sleep. I apparently was stopping breathing anything up to 30 times an hour.

Your body is supposed to replenish its supply of oxygen while it's asleep.

Before I was diagnosed, I often felt fatigued and got headaches. It was because I wasn't getting the necessary oxygen, because I stopped breathing so often.

Now, I sleep with a specially fitted mask over my nose to force oxygen into my system. It's like sleeping with a tube of air conditioning attached to you and it's not very comfortable. People with sleep apnoea can often be overweight. When I was being fitted with my mask there were two other guys there, both quite big, and the nurse told them if they lost weight they had a chance of getting better.

Because I'm only half a stone over my ideal weight she told me I probably would have the condition for life.

Sleeping with the mask is really uncomfortable and I'm still not used to it.

I stay up as late as I possibly can so that I'm exhausted when I go to bed, in the hope that I'll fall asleep more easily, but it's still difficult.

There isn't any particular cause for my condition, but doctors told me I need to stay away from anything with caffeine."

What causes insomnia

Neal Cook (36) is a lecturer in nursing at the University of Ulster with a background in neuroscience.

He says: "Sleep is important for a number of things. It effects memory, learning, the development of language skills and even the healing and repair of the body. You also process emotions during your sleep.

We know that if you're severely sleep-deprived it can start to cause damage to your brain and in severe circumstances, total lack of sleep can actually kill you.

There are a number of things that stop us from sleeping. Psychological stress can really impact on how we sleep. If someone is worrying about something or they are under certain pressures, that will impact on their sleeping patterns.

Other lifestyle factors come into play. Caffeine is a big problem. Not only does it keep you awake, but it can fragment your sleep structure. Some experts say you shouldn't drink caffeine after noon, others say you shouldn't drink it at all. Exercise is good, but it's more likely to disrupt your sleep if undertaken within a couple of hours of going to bed.

The optimum amount to sleep at night is six to seven hours. Once you go above that -- or if you get less -- then it can be detrimental to your health.

COMMENT RULES: Comments that are judged to be defamatory, abusive or in bad taste are not acceptable and contributors who consistently fall below certain criteria will be permanently blacklisted. The moderator will not enter into debate with individual contributors and the moderator’s decision is final. It is Belfast Telegraph policy to close comments on court cases, tribunals and active legal investigations. We may also close comments on articles which are being targeted for abuse. Problems with commenting? customercare@belfasttelegraph.co.uk