A Sleep Clinic's Nightmare
Written by Margaret M. Brand
I can also remember episodes of sleep paralysis. These have always included a very strong sense of there being something evil in the room. When I was quite a small child, my parents decorated the doors of the airing cupboard which was in my bedroom with some pictures. One of these was of a brightly coloured cockerel. Somehow the evil seemed to centre on this picture. I remember a period with frequent episodes of this phenomenon when I was a student and others at different stages of my life although, thankfully there have been none recently.
About twenty years ago (I am 55) I developed asthma. This is reasonable well controlled at the moment, but I have spent many nights sitting propped up on about six pillows. Any less and I was unable to breathe. I have often had dreams about not being able to breathe and have woken fighting for my breath and with a peak flow of 50 or less. On several occasions, I have dreamt that I was having an asthma attack, including being admitted to hospital, but not woken.
In the morning, my peak flow was always very low and I believe that on these occasions I was indeed, having an attack but was so exhausted from several sleepless nights on the trot (and days of trying to breath when it was really hard work) that I could not wake up. After a few weeks without sleep I would have a night when nothing would have woken me.
Eight years ago I was diagnosed with osteoarthritis in my spine. Since then I have not had even a second without pain and now also have arthritis in my hips, knees, hands etc. In January 1995, I was diagnosed with fibromyalgia which explained why the pain was more widespread and more diffuse than would be expected from the arthritis. At some point, I added a couple of protruding discs (I turned over in bed, must give up this exercise!) which increased the low back pain and caused nerve pain down my legs and numbness in my toes. I was on a waiting list for spinal surgery for two years but was then moved to a different orthopaedic surgeon's list and he decided that I did not need surgery. At the moment, the rehab registrar thinks that I should have it done. My GP does not. I just sit in the middle!
Insomnia is a feature of fibromyalgia yet a few years ago, I started sleepwalking again. My nocturnal activities have included waking sitting in the car trying to start the engine having put on some shoes, found the car keys, unlocked the door and walked down a gravel drive. One night I went into the kitchen, found a spoon, a bowl and a chicken Oxo. I crumbled the Oxo into the bowl and mixed it with cold water. Starting to eat it woke me up! Rarely have I tasted anything so foul (or should that be fowl?). Other nocturnal feasts were more appetising. I remember one of yoghurt, maple syrup and raspberry coulis.
I also wrote in my sleep. Some of this was real words but much of it would be groups of random letters. Rarely, very rarely, did it make any sense although there has been the occasional deeply philosophical statement - or do I mean rubbish? On one occasion, I went into the study, switched on the computer and sent an e-mail to a friend. The first that I knew about it was when I got a reply the next day. I sent messages to all of my friends asking that if they received an odd message from me, would they please check the time at which it was sent! Some nights I would wake seven or eight times anywhere except in bed.
At least, on these occasions, I knew that I had sleepwalked. More worrying were those times that I found the evidence of my nocturnal wanderings the next day. I remember finding the bathroom scales sitting on the kitchen work surface and, on one occasion, the contents of the kitchen rubbish bin distribute round the room. I really began to wonder if someone was 'setting me up' or doing what s/he considered to be a joke and had some spare keys and was letting him/herself into my house and moving things around.
I also took drugs during the night. On one occasion I had taken eight laxative tablets (they worked!). On others, more worrying, it was morphine. I developed a system of charting all of the medication which I take hoping that filling in the chart would become so natural that I would do it even if I was asleep. This worked to an extent but I now have another chart which lists not only when I take morphine but also how many tablets are left in the box. I have moved the drugs out of the bedroom so that I have to walk to get them (no problem!). I also set up elaborate 'booby traps' which would wake me if I left the bedroom. None of these worked for more than a few days.
I finally reached a stage where I was afraid to go to bed because I was so frightened of what I might do. My GP was desperate and didn't know where to find help. Clinical psychology said that they didn't deal with cases like this. Eventually, he referred me to a psychiatrist. This was about three years ago. The local clinic is an offshoot of the main hospital and tends to be run by junior doctors. This means that there is a different one every six months. I have rarely seen the same one twice. Each one has told me that s/he knows nothing about sleepwalking. One suggested that I do some research on the internet. There is very little research into adult somnabulism. Most of it is about children in whom it is fairly common, however, I found three studies which suggested that it could be a form of temporal lobe epilepsy which could be controlled by Tegretol.
Quite by chance, my GP gave me Tegretol, not to control the sleepwalking but for nerve pain for which it is also used. I stopped sleepwalking. It was some time before I made the connection between this fact and the Tegretol. I say that I stopped sleepwalking. I cannot, of course, be sure of this. All that I can say with confidence, is that I stopped waking up in the wrong place (I found it quite a novelty, at first, to wake up lying in bed.) or finding that things had been moved. Some time ago, because of another problem, I stopped taking the Tegretol.
For some months, I seemed OK but then the sleepwalking returned. It has not been so much of a problem as before. I think that this is probably because my pain control is not as good as I would like it to be and the action of getting out of bed wakes me because it is so painful. It was only a couple of weeks ago that I woke as I poured cold cranberry juice down my leg! I was sitting on the edge of the bed, and must have picked up the glass to have a drink. I don't know if, as on all of the many occasions that I have woken up sitting there whether I was on my way to somewhere or had just returned.
I suppose I am lucky that I have not seriously injured myself. There was one night when I had sat down in the bedroom presumably thinking that I was near the bed or the chair. Fortunately, although I landed flat on my back on the floor, I hit nothing on my way down. My pain levels were considerably increased for a few days.
A fortnight ago, I saw yet another psychiatrist. She decided that, as she knew nothing about sleepwalking (where have I heard that before?), she wanted to discuss it with the consultant who, unusually, was in the building. I had told her about my research (This is not in my file and I don't have a copy. The young doctor to whom I showed it was very interested in it and asked if he could have it. Presumably, this was for his own benefit rather than mine.) and that the Tegretol had worked (When I reported this to an earlier colleague of hers, he had said that this was probably proved that it was a form of epilepsy but the only way to prove this was with a sleeping EEG and "we don't do those").
She talked to the consultant who prescribed both Tegretol and imipramine. When I said that a similar drug had totally spaced me out, she said that I was not to continue taking it if I had a problem with it. As one dose knocked me out for thirty-six hours, I didn't take any more. The really good news was that the consultant wanted to refer me to a sleep clinic. He didn't know where the nearest one was but said that he would check when he got back to the hospital. I can't help wondering if this would have happened three years ago if one of his earlier junior doctors had admitted that s/he knew nothing about sleepwalking and had discussed it with him. Also, my next appointment with the psychiatrist is in six weeks rather than the usual six months. I feel that, at last, someone is taking this seriously.
So, I have severe insomnia (I wake 5 or 6 times most nights and often can't back to sleep for two or three hours. Sometimes when I do, I will wake thinking that I have slept for hours to discover that it is only ten minutes since I was last awake. There are nights when, if all my "snatches of sleep" were added together they wouldn't add up to two hours). I talk in my sleep. I have been told that I snore. I sleepwalk. I write in my sleep, even send e-mails! I have breathing problems when I am asleep (I am fairly confident that this is because of asthma as incidents seem to tie in with my daytime asthma being poorly controlled). I have episodes of sleep paralysis. I forgot to mention the nightmares. These too, seem to happen in phases.
Am I a sleep clinic's dream (look how much there is to treat!) or am I a sleep clinic's nightmare?
Margaret M. Brand
Thanks Margaret for this article.
Note: This information is not medical advice. Always see your doctor if you have a health problem.