When I was in unbearable pain, I sometimes asked my GP for morphine. He always refused. Then I read about a woman in Glasgow who died an hour after being given a morphine injection; she had been given 20 times the dose. That cured me.
Between July and September 1998, I tried to contact the professor in Belfast several times. On 3 September I spoke to his secretary who was horrified he had not contacted me and was going to ring his wife! All these women looking after him. She said he was moving offices as he had been made Dean and I said his personal problems were nothing to do with me and that I had paid him £435 for two consultations, a bit of useless plastic and a tape, and I did not feel I was getting my money’s worth and if I didn’t hear soon I would go to the national newspapers. She laughed! We both laughed. She didn’t believe me. Or she’d heard it before.
On 8 September I left another message and an hour later there he was fluffing about with excuses. He then rang my GP to ask him to prescribe Prothiaden, the muscle relaxant for use at night and to up the dose if it didn’t work. I asked whether it was specific to the jaw or whether I would be universally floppy and maybe incontinent! He didn’t fall about but merely answered the question. He thought I might need a fatter splint as indeed I might, but he was not concerned about one side meeting before the other although he had stressed the importance of this at our first meeting.
Because I was desperate, he was reassuring and still convinced he would cure me. It may take longer with my advanced clenching. He went on at some length about the staircase effect which further research told me concerned the numbers of cures rising as you go up your unwell staircase! What that meant to me and my affliction I had no idea.
I started Prothiaden the next week and soon found I was very tired when I woke up and remained so all day. The professor advised me to persevere and even to increase the dose to three per night (75mg). He was amazed to hear it had side effects with such a low dose yet he was expecting me to be cured on it. He then suggested they may not have kicked in and that this could take months.
In December, as there was no improvement, he advised me to post the splint and he would get a larger one made. He suggested I come on 14 December.
I continued to sleep a strange Prothiaden sleep and had trouble coming to. Some days I hardly seem to wake up.
The Ireland trip went well and I had no head problems. I saw the professor for about three minutes as he fitted the enormous splint. He asked me few questions and seemed harassed and not that interested. However, he did say that my year of treatment was to start again.
Once back, H heard he was to join his next ship the following week after we had been trying to convince ourselves he would get extra leave and be here well into the New Year. So once again we tried not to let the thought of separation hang over the one week we had together.
I really persevered with the enlarged splint day and night for several years but it was, in the end, too huge and impractical for daily life. I did have a couple more made later but with no success.
And of course, I lost it more than once, most notably in a coffee shop in Wimbledon when it fell out of my coat pocket when a passing person knocked it off the back of my chair. In retrospect I heard a clang but thought nothing of it. Later we went to Kensington High Street, an old shopping haunt of mine, and it was there that I missed the splint, and after several futile searches in bags and pockets, I went back with faint hope to the coffee shop. Imagine my jubilation when, after searching under all chairs, I found it under a man’s foot some tables from where it had started. Fortunately, they had not swept up or I would have had to search their rubbish. I wanted to dance a jig and drink a bottle of champagne, but the former was inappropriate and the latter a trigger.
Sometime later, after one of those trying-to-wake-up-as-though-drugged mornings, I decided to wean myself off Prothiaden. I was by this time worried for three reasons: firstly, I feared a stroke as it semi-paralysed my face on one side briefly but more than once; secondly, at times I could not even think of the words shag and cormorant as I looked at them at breakfast time and this was new; and thirdly, my concentration was terrible. If my muscles needed relaxing than I must do it manually. Of course, getting off it was not simple and I developed an almost permanent tension headache, not a migraine. Nothing relieved it. My GP suggested I go really slowly and stay on the 75mg every second day to start with. Because I felt so vile and irritable, I did this.
Meanwhile away from the allopathic world I was seeking answers with alternative practitioners from the more or less sane and established, to the far from sane and well … whacky.
In April I embraced the very sane Alexander Technique as there was a teacher in Oban. She suggested sending my hair to be analysed by someone she knew for £20.00. He was an expert in the less sane radionics and would get to the bottom of it, she said. But I was not ready for radionics. I decided to consult a chiropractor who came highly recommended.
Photo by Karolina Grabowska
