I was born with SVT, a heart irregularity which I managed well. In 1998, a bout of junctional tachycardia resulted in my heart having to be medically stopped in coronary care but I didn’t let it interfere with my busy professional life and returned to work next day. Four weeks later, arriving home from work I was doing the laundry when I experienced a buzzing noise in my head/ear and slumped over. I thought I’d just overbalanced but when trying to get up found my right leg and arm had no feeling. I crawled, dragged myself to another room to a telephone, overcome by the worst headache I’ve ever experienced which was accompanied by disorientating double vision. I was perfectly lucid throughout and managed to use the phone to contact my daughter but discovered that I couldn’t talk properly as my tongue felt as if something was gripping it, so my speech was slurred. Fortunately my younger daughter unexpectedly arrived and I heard her use the telephone and say she thought her mother had had a stroke. I was admitted to hospital (although I had heard the paramedic say my blood pressure was in my boots and ask my daughter if “her mother hit the gin bottle”. Her response was that I neither smoked not drank alcohol.)
Since it was Friday night, I received no medical treatment, apart from blood tests. Then, 3 days later, on the Monday, I had a scan. Gradually the feeling in my limbs returned and I recovered my speech. Nothing about the cause of my condition was discussed with me although I did have a lumber puncture on the Tuesday. I was eventually discharged after about a week with no explanation or follow up and I returned to work as normal.
I was a regular gym goer, vegetarian, non smoking & drinking and weighed 7 stone but I then started suffering an abundance of symptoms following my “episode”. The only person who gave me any kind of explanation was my cardiologist (private, not NHS). He said, related to my heart issues, I could have had a TIA which had healed and left no trace by the time I had the scan 3 days later. I had to start using a walking stick, experienced awful debilitating balance issues and dizziness. This was diagnosed as vertigo by a GP specialising in ENT, though medication didn’t help. For a time I also suffered confusion, not recognising my husband and asking him who he was, not knowing whether it was daytime or night time, thinking I was in my childhood home and walking around the house at night looking for my long deceased parents bedroom. A myriad of other symptoms but all these were put down to other causes by my GP.
I coped at work for almost another 11 years, in a high professional capacity until retiring at 63 in 2009. My hearing had declined after the buzzing noise in my head and I wore hearing aids. An MRI scan showed I did not have an acoustic tumour. Although I led a very active life, travelling to USA many times with grandchildren, fully participating in theme parks and such activities, I could no longer tolerate the dizziness, balance issues and fatigue which kept me in bed for several days at a time. I then had a private MRI scan in 2017 which identified brain damage from an old stroke. The irony here is that the 2014 MRI had also highlighted this to the GP but it wasn’t acted upon as he was just looking for an acoustic tumour. So, almost 20 years later I saw a stroke specialist who told me that I’d had a large stroke in 1998 which had left me with significant brain damage. He added that he had no idea how I could have possibly compensated with this, just that I had - and then told me I must be extremely tough, saying that some people just are! He also added that never in all his career had someone been referred 20 years after having such a large stroke with such significant brain damage. My periods of severe dizziness, sickness and fatigue requiring bed rest were explained to me as occurring when my brain cannot compensate at such times of stress, other illness or even excitement; ie not being able to cope with everything at once . This was hard to understand and accept
My daughter said later, “Mum, he said you are a miracle”! The GP practice apologised when I asked for my 1998 medical notes which showed they’d recorded I’d had a bad migraine. They also apologised for not acting on the 2014 MRI which had highlighted the brain damage. I was told I that could make a complaint but I said I didn’t want to get anyone into trouble. It wouldn’t achieve anything. The hospital notes to the GP practice showed that my admission had of course been for a suspected stroke and nothing more was forthcoming from them. I am surprised that my admission with all the symptoms of a stroke, to the same hospital which had stopped my heart 4 weeks earlier, had not been connected. I understand the current practice would be to give blood thinners when medically stopping a heart but at that time I didn’t have these. I feel a bit let down and abandoned although I wouldn’t have done all the things over the previous 20 years had I received the correct diagnosis in 1998. I still go to the gym daily, at 78 and stick to my healthy life style which I believe must have helped me survive to this age. I recall all those years when I wondered what on earth had happened to me that time in 1998 if it was t a stroke, as I’ve never felt so ill in all my life. But now I know. It was a stroke. And a large one at that. I understand, take all the stroke meds and I cope with all my various symptoms. Sometimes I am glad I hadn’t known as I’d have been prevented from many activities which I’ve managed to enjoy.
Although I would not wish my experience on anyone, I wonder if others have been similarly overlooked.
… take care
and so too are the means of building a post stroke life.
I felt a fraud when I joined here, so many were so much worse than me. But when I really need to know things I don’t allow myself to shy away asking.