Hi Beckyjan
I think the 'fainting' is one of the areas where the medical people were most unbelieving.
The first time that I really knew there was a problem for Jan - bar one or two incidents when she said she had forgotten a name, and we put it down to age - was when she told me that she had been fainting around breakfast time, and falling against things, getting bruises.
At that time I was leaving home early to drive 50 miles to work, so was not with her at breakfast.
Jan always felt her faints coming - "something rises in my body, then I black out". We worked out a pattern where, when she felt it, she would get to the floor with her head as low as possible. This often stopped a full faint. She also said she could feel pins and needles at the base of her spine. Over time, she also exhibited symptoms of Raynauds Disease.
http://en.wikipedia.org/wiki/Raynaud's_phenomenon
If she fainted, she would go very hot to touch afterwards.
We were about to leave for a holiday in Africa and had been having extensive innoculations, and were about to start on the anti-malarial pills, so we went to the doctor, thinking the jabs had something to do with it. I asked if we should not take the pills, and he said there was more danger from contracting malaria than fainting.
While we were on holiday, Jan fainted a couple of times, so, on our return, we saw the doctor again and, because I had private medical cover from my employment, he referred us to a heart specialist, the idea being there might be a problem of arrhythmia. Symptoms include "palpitations, dizziness, fainting, shortness of breath and chest discomfort"
When we walked in to the consultant's office for the first time he said, without even examining Jan, "you may need a pacemaker". This scared both of us but, in looking back, if only it had been that easy.
There were tests over about six months but always inconclusive. At one time he said he wanted her to have an ambulatory heart monitor for 24 hours. We went to the hospital and she had one fitted and was asked to sit for a few minutes in the waiting room. During this time, she felt the first signs of a faint so I alerted nurses. They took her to a side room, then all hell broke loose - lights and alarms, staff running. They said afterwards they thought her heart had stopped.
I thought that at least we would have the monitor trace, but they found nothing at all on it.
Over the next few years there were tests by other heart people, psychiatrists, basically any private medical consultant who wanted to make a bit of money.
Meanwhile, the faints continued, and started to happen when Jan was asleep. People say to me "how could you tell she fainted in her sleep?". As Jan's condition progressed, I seemed to sleep very lightly and could detect the slightest movement. When she fainted at night, her body would seem to deflate as she lay there.
One of the things John Suchet said was that when his wife fainted, her eyes were wide open and he thought he had lost her. Well, I have been telling a similar tale at the AS induction courses for several years now. At least twice when Jan fainted in bed, I thought she was gone and I was terrified.
A peculiar thing was the fact that her faints seemed to be timed. On the worst night, she fainted four times in her sleep and they wer always at a particular part of the hour. Once, lying beside her I looked at the clock and thought "there will be another one along in two minutes" and, hey presto, it happened. Weird.
In the years since, the medics have tried to tell me these were fits, but in the way they presented, they were 100% faints.
Nina, who knew Jan before I did [I met them the same day in 1965, and boy was that a lucky day for me], says that Jan told her she had been a fainter in her early teens. During our 25 years together before the these faints began, she had never fainted though, to my knowledge.
For the past few years Jan has had regular fits - unlike the faints though.
I've just been looking back through my diary and all the horrors of the early days came back to me. From day one, it has been hell.