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I knew something was not right back in 1996 when I had my first episode, but I did not know what was wrong with me to start with. My episodes (as I called them) were infrequent to start with and they were small episodes compare to the last year of having them, undiagnosed. I felt dizzy and disorientated; it was like having a blackout but being aware of it, to begin with. I didn’t go to my doctor until 2000; the episodes were becoming as frequently as one every couple of months. My GP referred me to a Neurologist unfortunately; I waited from November 2000 to August 15th 2003, before I actually had my appointment. During 2003, my episodes got very bad and very frequent, the first bad one that frightened me happened when I was in the house on my own. I was laid up in bed with my damaged spine (this is my disability) and my husband had just made me a sandwich and a cup of tea. He left the house to visit his father in hospital, I ate the first half of my sandwich and I felt as if some of it was stuck down my throat, I didn’t cough and I wasn’t gasping for air, but thought I would reach for my cup of tea off my bedside locker to help dislodge the sandwich from my throat. The next thing I realised was I was lying front down on the floor with my pillows on top of me. My head was throbbing and the bridge of my nose was painful, I had smashed on the locker when I fell unconscious. I told my husband what happened and he did say he that I had exaggerated what actually happened. I didn’t argue with him but I knew that I hadn’t imagined what happened. The next episode like that one happened whilst we were in a restaurant for a meal, our meals had come to the table and my husband went to the bar to get some drinks, so I took a bite from my side order of bread and I got that feeling of something being stuck in my throat. I remembered thinking I need a drink and the next thing I knew I woke up on the floor there was a man rubbing my face talking to me, a lady behind me rubbing my head, my meal was down the front of my clothes, there was a steak knife ½ inch from my knee, my head was throbbing but it was painful as well. Seemingly, one minuet I was sitting up right in the chair and the next I fell to the right of me, smashed my head off a wooden panel on the wall and everything on my side of the table came with me. Once again, my husband missed all the action but soon realised there was something wrong when the waitress dragged him from the bar to see the mess I was in. That was April 2003 from then we realised there was a connection to food and the two recent episodes had happened with bread, so we did our own tests cutting out bread and starches, but the episodes continued and they were gathering pace to 3 in a week to 3 in one meal. We worked out it was happening when I swallowed my food so in August 2003 when I went to my long awaited Neurology appointment I was glad because I thought there was something going to be done about these episodes. I saw a registrar not the consultant but I thought he would know what I was talking about, I explained my symptoms and my husband explain what he witnessed but to no avail. I was told that he hadn’t heard of anything like the symptoms I was telling him and that maybe I needed to see somebody in ENT. (Ear, Nose & Throat). He did offer a brain scan just to check there wasn’t a problem and sent me on my way. I came out of the hospital in tears and I so upset that I had waited 3 years to be told nothing, I actually started to doubt myself and that I was imagining my symptom’s. Three days later, that registrar phoned me at home to apologise for being unsympathetic towards me and that the reason he didn’t know what I was telling him was because he had never heard of my condition and that it was a cardiac problem. I had a cardiomemo for 2 weeks, which recorded eight episodes with heart block for 23 seconds on one of the results. I was promptly admitted into hospital and had a battery of tests just to rule out other problems. My cardiologist was very pleased to have me as a patient because what I have is so rare, he even induced my symptoms, by making eat dry bread whilst hooked up to an ECG machine so he could have documented evidence, I was his 1st patient with swallowing syncope. I was hooked up to a telemetry machine, which recorded continuously and managed to record some episodes whilst I ate my meals.
Unfortunately, I had problems convincing other people what was happening, including my husband, who just could not get his head around what I was telling him. In the end, I had to get a doctor and nurse to sit down with him and explain it to him in a way he would understand and they gave him copies of my ECGs with the heart block.
It was hard to explain to friends and family without them thinking I was a head case, eventually I just let some of them witness the episodes and to say they were shocked is an understatement.
What was difficult to cope with was the 5 weeks waiting to go back into hospital to have my pacemaker fitted, that was because we knew what was wrong and we knew how dangerous it was. Every meal was torture because we worried if my heart would stop and never start again; up until then it had been sheer luck my heart had started back into a normal rhythm. Before I was diagnosed with syncope I didn’t know my heart was causing the problems so I didn’t worry as much.
I had my pacemaker fitted on the 17th of December 2003 and I have never looked back. I can actually enjoy meals now without all the worry and stress of something happening. I still have the swallowing episodes but nothing happens because the pacemaker does all the work. It is hard to believe that eating could be potentially so dangerous that I could have died.
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