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From: Siobhan Stone
Hi Mary I've just read your email with interest. I have swallowing sycope, which was diagnosed at the end of October this year. I've had it for 8 years and I'm 34 yrs old. For a long time I just got on with the unpleasant symptoms, which were the feeling of something being stuck in my throat although there isn't (to me I accept this as a warning of the coming attack). My surroundings seem to go dark and I become disorientated, dizzy, and the feeling of passing out. But over the past 8 years my symptoms progressed to more frequent attacks 3 - 5 in a week and completely passing out on occassions. These attacks happen when I eat and only after I have swallowed my food. When I have passed out I have ended up falling onto the floor hurting my spine, I already have a degenerative spinal problem so I do worry about what will happen to me when I pass out, I can not afford to have more damage caused to my spine. I don't want to frighten you but I worry with every mouth full of food I eat and swallow waiting for something to happen. It is frightening when an attack happens however long it is for, because it is an uncomfortable feeling, which is out of my control. Within the next few weeks I will have a pacemaker fitted & feel that it's only option I have. After having this for 8 years and being fully aware of how the attacks have changed from 2 in a year to how they are now, I am aware that the attacks will progress to a critical point, which could be fatal for people who have swallowing syncope. I don't know how much information your doctor gave you, I am fortunate to have a very good cardiologist in Swansea, (South Wales, UK), who induced an attack whilst I was on an ECG machine so he could record and witness what was happening in an attack. There are no gaurantees as my doctor explained, the symptoms will not go completely, but if the pacemaker can take over in my heart when it begins to stop at least it will be managable. The alternative is for it to be left untreated with the risk of my brain being starved of oxygen. The circulation in my legs being cut off completely and the worst of all is death. I sympathise with you because my husband and parents do not fully understand what happens to me when I have an attack, it is distressing for them to see it happen. I can understand your doubts about wether it is the right option for your young daughter, personally for me I feel it will be because there are no other alternatives and it would be nice if I could actually eat a meal without all the anxieties that I have & my husband has when I eat.
Yours Siobhan
I will let you know how I get on with my pacemaker if you wish.