Before getting M.E. I never had any problems sleeping. If I was stressed or upset or worried I actually slept more, not less. I LOVED my kip and needed at least 8 hours, preferably 9 and at weekends 10, to feel human. I’ve never been able to sleep during the day, or nod off on trains or watching the telly, but my routine at night was always to go to bed around 10.30pm, read my book for about 20 mins, turn off the light and sleep through until the alarm went off in the morning. Lovely jubbly.
The first symptom of M.E. I developed was insomnia (though of course I didn’t know I had M.E. at the time). I’d go to sleep as usual, but wake around 1am and be completely unable to drop back off. For someone who needs her sleep this was torture and I had no idea what was happening. In the first two years of being ill I tried all sorts to re-establish my sleep pattern (hypnotherapy, herbal remedies, milky drinks, reflexology, massage, warm baths, aromatherapy oils, acupuncture, pressure points etc.) but nothing worked.
In 1996 I became very severe affected by M.E. after contracting meningitis on holiday in Africa and my insomnia took on epic proportions. I had problems getting to sleep and once asleep I had problems maintaining sleep. On average I was managing about 3 hours sleep per night, in broken 45 minute chunks. At various times I stopped sleeping altogether. At my worst I went 3 entire weeks without sleep, which is supposed to be medically impossible and I don’t think to this day anyone believes me.
What I discovered in these severe insomnia episodes is that the brain needs to dream. So despite being very ill and lying with my eyes closed I was still conscious (ie. I could hear everything happening around me and if you spoke to me I’d answer) yet part of my brain would be dreaming, so I’d be in this twilight world of dreaming while waking which was really disconcerting! I was conscious enough to know I was dreaming, but powerless to stop it.
Your body needs to sleep to repair itself and I wasn’t getting enough. Consequently my hair fell out in handfuls and my skin became dry, cracked and started to peel off – a bit like when you get sunburned. The nausea and dizziness were truly awful and I was so mentally confused I felt like I had some kind of brain injury.
I hadn’t become as drug allergic then, so tried every pill known to man. I had horrendous allergic reactions to the supplements GABA and Melatonin, as well as drugs like Prozac (didn’t sleep for 4 days after one pill). I was able to tolerate the antidepressant Dothiepin though (a sedating tricyclic) and used this alongside a sleeping tablet called Welldorm (chloral hydrate) which at least gave me a block of 3-4 hours per night, though realistically combined together they should have knocked me out for hours! Eventually I became allergic to both drugs, so ended up on a combination of the antidepressant Zispin (mirtazapine) and the hypnotic Zimovane (zopiclone) with a sedating opiate-based painkiller (Co-dydromol) thrown in for good measure, which still only gave me about 4 broken hours. I managed to take these for about 3 years before I again became allergic. In desperation I persuaded my GP to prescribe some benzos, starting with Diazepam (might as well have eaten Smarties!) and progressing through them all before ending up on Nitrazepam which didn’t work either. There were some nights where I was so overwhelmingly desperate to sleep that I took a combination of all the drugs at once (one night I took 10 different sedatives/painkillers) and didn’t care a jot if I died. And d’you know what? I still didn’t sodding sleep!!!
There weren’t as many sleep clinics then as there are now, but I did find one in Edinburgh (I’ve no idea how I thought I’d get there as I was so ill I couldn’t even walk to the loo at the time!). I wrote to them outlining my situation and they replied saying they only treated sleep apnea, so that was that. Out of all the myriad of symptoms I’ve had over the last 20 years insomnia has been the worst and the one that has made me contemplate suicide the most.
As my M.E. started painstakingly slowly to improve in about 2002 my sleep did eventually start to return. In 2006 I became allergic to all the drugs I was on following what I now know to be a severe mast cell reaction to having chiropracty on my back, and I was beside myself at not being able to take any of my sleep meds. However, despite some very rough months (withdrawing suddenly from antidepressants is not to be recommended!) it turned out to be a blessing in disguise and eventually my sleep was better off the drugs than on.
I’m now able to get off to sleep normally, although I do have to listen to a talking book on my ipod to get my brain to switch off (I set the sleep timer for 30 minutes but usually drop off after about 10 minutes). I do still wake in the night, often around 1am and again around 4am, but again I put my ipod on and usually get back off after about half an hour or so. I’ve always woken between 6-7am, no matter how much or little sleep I’ve managed to get, and that’s still the pattern today, but at least I’ve managed about 5-6 hours sleep in the meantime for which I’m eternally grateful.
I did discover, though, that I have a range of parasomnias which are still affecting the quality of my sleep. As a child I apparently sleep walked, but grew out of this by the time I went to school. As a teenager I developed night terrors and would have horrendous nightmares which had me screaming and running round the bedroom trying to avoid giant spiders I was convinced were real 😉 . As an adult living on my own I’d no idea my sleep walking had returned until I came downstairs one night to find a pile of burned matches on the coffee table in my lounge, which totally freaked me out as I had no recollection of being up in the night and I could have set the house on fire! It was then I installed a burglar alarm with door alerts which I use at night-time, in case I wander outside in my sleep! I also have a rare form of parasomnia called Somniscription or sleep writing. I regularly wake to find post-it notes full of ramblings stuck to my bedside table, some of which I can vaguely remember writing in my sleep and others I have no recollection of. It’s a good job I sleep on my own is all I can say 😉 .
In 2011 I was well enough to get to Newcastle for an appointment with my ME specialist (it’s ironic that when I was really ill I was too ill to see him). We discussed my insomnia and parasomnias and he referred me to Dr Anderson, a neurologist who runs a sleep clinic. I stayed overnight for a sleep study, which confirmed my sleep was poor. Her diagnosis was “you have ME and chronic pain, I’d expect you to sleep badly” and when she tried to prescribe drugs for me to take (ones I’d already tried and was now allergic to) and I told her I couldn’t tolerate them she told me that if I wouldn’t do anything to help myself there was nothing she could do. I could have cheerfully killed her. If the test shows I sleep badly now I’d love to’ve had a sleep study done when I was at my worst!
Of course, I now know that histamine is a stimulating neurotransmitter which in some tests has been shown to peak at around 3am. As I’ve mentioned before, I know I’ve had mast cell issues my whole life so the fact I had arousal issues as a small child, during puberty, and since getting M.E. (which I think is a mast cell disease) my parasomnias and insomnia make much more sense. The two antidepressants I took which helped my insomnia both also have anti-histamine properties, although actual antihistamines I’ve tried have no effect on my sleep whatsoever. When I was really suffering with insomnia I so wish I could have gotten a sleep expert interested because I think I would have made a good case to study, but now I’m hoping my sleep never gets that bad again and the opportunity for an expert to look at my almost total sleep deprivation has sadly been lost.