My experience

I can only apologise for the length of this page; I have been honest and maybe, if you do read it parts of it will resonate with you.  If it’s too long skip to the sleep tips, you may find something useful there.

For four years I was one of the 10% of people who suffer from chronic insomnia.  It started slowly as I suspect these things often do; I started to wake at 3am, 2am, 1am … you get the picture and, I was unable to get back to sleep.  My GP and I at first wondered if it was the menopause but tests that I had confirmed that I hadn’t yet begun that phase of my life.

Three years earlier I had damaged my back and I had been required to take a lot of prescription pain killers and anti-inflamatories to get through this period of my life.  Although, after a year I did manage to significantly reduce the amount of medication that I took I believe, in retrospect, that this, along with the chronic pain, had already had an impact on my sleep pattern.

It was six months after my sleep had started to become an issue for me and I was so tired.  I was prescribed sleeping tablets which I agreed to take short term.  Initially, they did allow me to sleep but I walked around in a haze with an awful metallic taste in my mouth and anxiety growing as I knew that this wasn’t sustainable.  It became a catch 22 situation for me the more tired that I got, the more stress I felt, I started to pick up colds that seemed to linger, I felt more tired, work stress grew beyond the norm.  I saw another GP who prescribed anti-depressants, I didn’t think that I was depressed but I was becoming desperate and just needed a respite.  I didn’t get the sleep the GP had predicted and now I was not only exhausted but in a permanent fog from the anti-depressants.  I went to the canteen for my Christmas dinner and poured chocolate sauce (it was in a jug next to the gravy jug) all over my plate.  I got back to my office, took a bite and burst into tears; I felt hopeless.  I went home that night and developed flu which didn’t shift for over three weeks and at the end of it I hit the worst.

After the flu disappeared so had any effect that the sleeping tablets had previously had; they simply did not work.  I had an 8-week period where I got no rest at all; at the time, I described it as being wired awake, on alert through the night, literally sitting up and waiting.  To my exhausted brain, and body, it felt like the off switch in my brain had been broken.  I despaired of ever sleeping again.  We went to A & E because I had been awake so long that I was getting heart palpitations and of course, as soon as I arrived at the hospital my palpitations had stopped and I was sent home.  This went on and on through night after interminable night and nothing could give me any respite.  In a one-month period, I was prescribed Zopliclone, Temazepam, Diazepam, so many drugs that their names became a blur, medication I had heard of and was a little scared of,  but nothing gave me any respite.  I have tried multiple ‘Z’ drugs designed to calm, reduce anxiety and send you to sleep but they didn’t!  I began to imagine that there were people in my room so that on top of exhaustion I was terrified and my anxiety shot through the roof.

The doctor again insisted it was depression, it wasn’t!  My partner and I knew that it wasn’t depression, we argued with the doctor who couldn’t see it as anything other than that but I agreed to take a different medication for depression as I was desperate.  I became a shadow of myself and still couldn’t sleep.  I couldn’t nap, I couldn’t even yawn; I was just permanently awake.

I became an expert in sleep hygiene yet, each time I saw a new doctor and I have seen a lot they treated me in such simple terms.  Yet this is a complex issue treated as if it has a simple fix.  It’s depression, you need to not drink caffeine drinks.  It's external stimuli, have no blue light items in your bedroom, keep your room cool, have a regular night time routine, watch no TV after 9pm and so on and so on.  I did it all, I read every book I could find and there was no shut off, no peace, no sleep… and nobody got it, because unless you have suffered it over a prolonged period you can have no idea.

Although, I was exhausted and worried about my job, by then I had been off work three months, I knew that I had to claw back some control.  I started to read about sleep and more importantly the lack of it.  I think that this is when I felt at my most frightened.  There are so many people out there who tell you about the damage that sleep deprivation is doing to your health but they are only making your anxiety worse.  We’re intelligent, we don’t need a horror list of possible illnesses that lack of sleep causes we already know it, we feel it, we’re living it!  I didn’t need a book to tell me what was happening in my body, I felt it every single day, I saw it every time I looked in a mirror, I was in a nightmare on a carousel that I couldn’t get off.  That’s why I’m writing this to say there is hope; it can be improved; you can get better!

At this time, I began to look to complementary therapies.  I spent a fortune on Reflexology, Massage, Acupuncture, Hypnotherapy and Reiki.  I joined a gym.  I had CBT.  I used a sunbed to try and get extra light even though I am normally against them.  Some things worked better than others; they gave me some relaxation during the session, but no success with sleep.

I began to walk for two hours every lunchtime to try to absorb sufficient sunlight and I swam a hundred lengths a day, I ate a healthy diet, drank 8 pints of water a day and nothing changed.  Had I been right all along had there been some damage to the part of my brain where you switch off to sleep?  I was exhausted and frightened; I can say that this is the loneliest of illnesses.

During my research, I read about the use of Melatonin, to reset the body clock, because this is where I had always felt that my problem lay.  It used to be prescribed to combat jet lag but there are now age restrictions placed on it in the U.K.  My partner and I went to see a GP, armed with information about it.  She took one look at the state that I was in and agreed that something different (away from anti-depressants and sleeping tablets) had to be tried.  She called the pharmacist and asked if she prescribed me Circadin (melatonin), despite my age, if he would be prepared to dispense it.  He agreed and it did have some benefit.  You take it over a three or four-month period and it helps reset your body clock.

I managed to get a few hours a night taking Circadin and thought that I had won the lottery!  I got my life back, went to university for a year to do my teacher training and started to think that my sleep problems were in the past.

Of course, they came back and whether I could have been more vigilant I do not know but the time came that as the stress in my life expanded my sleep diminished, in both length and quality.  At the same time, I began to experience what I call night terrors.  At first, it was the impression that somebody was in my room and I would be reduced to floods of tears. At their worst, I was experiencing 6 or 7 a night; within 15 minutes of falling asleep I would wake up screaming, crying, sobbing… I saw a counsellor who brought up terrible childhood issues but each time I left her my night terrors worsened (sometimes up to seven episodes of screaming and crying a night) and my sleep became even more erratic.  It was as though Pandora’s box had been opened and without resolution of the issues it was taking over me.

This time, the success of the Circadin was limited; it worked initially, in that it gave me two or three hours a night but then it stopped.

After three years, I finally saw not one neurologist but three, I had three MRI scans in a twelve-month period.  The prognosis was not good; there was no clear cure, medication wasn’t effective, I was barely surviving on 56 minutes sleep per night.

The results of the MRIs seemed to muddy the water without providing any firm diagnosis of my illness.  Following a fall in 2013 when I banged my head I have been diagnosed with Post-Concussion Syndrome.  I have two broken discs in my lumbar region, so I am no stranger to chronic pain.  I also, have been diagnosed with Dystonia and at the end of 2016, I was told that I should consider having two discs in my neck replaced to prevent the numbness and weakness down my left side from worsening.

Add to these physical problems I have lost five significant people in my life; my best friend, my grand-mother who I adored, my partner, my father and my mother. My bereavements have clearly affected me, to this mix add work related stress issues and studying for a degree  whilst working full time, then doing my teacher training and you have an idea of the muddle I was working through.

One of the problems with insomnia is that everybody has experience of sleep and so everybody feels they know your pain.  They mean well but people say things like ‘I know how you feel, I was awake at four this morning’.  Even one of my neurologists spent a large part of our very expensive private consultation telling me about the sleepless nights he’d had with his new baby.  That’s the crux; we all have experienced poor quality sleep, but we all know that it will get better, with insomnia you’re stuck in a relentless cycle of weariness and exhaustion.  I read a story of a lady who had suffered with it for 21 years and I wept for her and for me.  Despair took over me and I seriously contemplated the point of everything.  Was this to be my future, my story?

My neurologist prescribed the strongest medication he could, stronger than anything the G.P. had so far been able to give me.  He also, trebled my dose of melatonin, again something that my G.P. could not do.  He sent me away for three months and the hope of a place in his sleep clinic.  I left his office hopeful and positive that this time I had a chance.  Nothing changed, in fact I hit the biggest low I had ever had because this had been sold to me as pretty much last chance medication and I was still only getting 56 minutes per night.  Despair set in and I had a few days considering my options - they were not good.   Despite the ineffectiveness of the medication my neurologist refused to see me for three months - I felt truly abandoned.  I came out of my despair long enough to consider what I knew to be true that my brain was permanently switched on that I needed a way to calm it.  I started to read about and practice Mindfulness.  It was difficult for me to concentrate, but I persevered for minutes at a time and found some small moments of peace.   

I believe that in a funny way a car accident that I was involved in saved me.  Two days before Christmas my family and I were on the way to a spa day.  As we were stationary waiting to go over a bridge on a narrow road a car drove into the back of us and this in turn shunted us into the car in front.  The upshot was we all ended up with whiplash and because of my existing neck condition I was taken to hospital in a neck brace.  The latest injury meant that I couldn’t work and as a self-employed peripatetic language teacher I had to give up my contracts for the new year.  Two days later my mother died on Christmas Day and I had the real impression that the universe was shouting at me to wise up to what was happening to my health and to take control and so I did.

My brain felt like the off switch was broken so how could I at least find some rest albeit whilst awake?  I’d been dabbling for a few months with Mindfulness and meditation and I decided to focus on this.  It was a challenge, my monkey brain just wanted to dart about.  I persisted and started to feel that I was getting some moments of calm. Before Christmas I had tried something called EFT (Tapping).  It sounded odd but I went along and, I want to tell you that it changed my life but, I didn’t enjoy it at all.  I felt foolish, uncomfortable and didn’t go back after the first session.  In January, I suppose I must have looked up EFT again, I don’t remember but suddenly my Facebook wall was inundated with advertisements for a Tapping Summit.  I went online and liked what I saw.  I decided that I should try and find an EFT practitioner again.  Then I saw that a practitioner in Manchester, was not only an expert in the field but also had a three-day training weekend coming up.  Dither, dither would it help me…there’s only one way to find out ..sign up for it …   I did.

EFT provided the first major change in my illness.  I had no idea if it was for me and in fact, I felt a bit of a fraud as there were many practising therapists on the training.  I persevered and by the end of the training weekend I had dealt with the emotional impact that my broken discs had had on me.  Also, the deep-rooted fears that I had unconsciously acquired whilst at the death beds of my close family bubbled to the surface.  In simple terms, I had become afraid to go to sleep because of the associations with death that it held for me. For the first time in four years I slept through the night.

I decided that there was still some way to go for me to understand better what I had experienced was to develop my understanding of the brain and the sub-conscious mind in a practical way.  During EFT, a hypnotherapist in the area was highly recommended to me and I called her.  The result was that I studied my Certificate and Diploma in Clinical Hypnotherapy with her and managed to get some insight and some cessation from the night terrors.

In order, to develop myself and continue to repair the damage I then discovered a wonderful practitioner to attune me in Reiki.  The calmness that I feel from my Reiki practice centres me and in fact, in the night when I wake too early I go straight to Reiki to keep me calm and stop the monkey brain chatter from firing up my brain again.

My sleep is precious.  It is also, fragile at times and I am very conscious of the need to nurture it.  This is my own experience and others may disagree but I am happy to make subtle changes to preserve the quality of my sleep.  For example, my partner and I went to a festival during the summer.  Rather than potentially affect my sleep we opted to sleep off site to avoid noise disruption.  These are small compromises but to me nurturing my sleep is most important.

Poor sleep is a symptom of a root problem, maybe more than one.  The origin may be emotional or physical and often complex; mine was both.  At some point, as we ignore our bodies and forge ahead something has to give.  For some people that is their ability to sleep and at this stage you really can’t afford to ignore it any longer.