Hello! New to living with Brugada syndrome…

[homeward]

During a short stay in the Horton, Banbury, and a subsequent long stay in John Radcliffe Hospital, Oxford, in September (where the staff are wonderful, friendly, caring beyond belief, professional, knowledgeable, lovely, and incredibly skilled), it was discovered (and confirmed) that I have Brugada syndrome… – something that explains previous bouts of syncope, etc..

I’ve pretty much read my way through everything I can find, medically, but I have a few questions re the finer details of living with it… – and especially the S-ICD which now sits beneath my left armpit.

• How soon, if ever, do you get used to/forget that “S-ICD which now sits beneath [your] left armpit”? If ever?

• What do you call your S-ICD? Mine is currently “the/my box” – basically, because that’s what Julian, my specialist/surgeon called it!

• Finally (for the moment): how does it affect your sleep; and how do you cope? After 58 years of sleeping on my left, I have been sleeping on my right, of course… – but using a short bolster to keep my left arm raised, and thus away from “the box”. This sits between my partner and I; and is something of an encumbrance… – but I now struggle to sleep without it!

Thank you in advance for your help!

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Hello Homeward, I am sorry to hear about your diagnosis, but delighted that the excellent staff at the Radcliffe have provided you with the best option for treatment.

Unfortunately, this forum is not always very busy, and people with a variety of conditions and treatments come on here. If you use Facebook, there is an excellent group called Living with an ICD (Support Group) that is extremely active.

If you have any questions regarding brugada or your ICD, you can also contact Arrhythmia Alliance on 01789 867501 or [e-mail] (we're based in Chipping Norton). We host patient support groups locally. Our one in Chipping Norton was just last month, but we do have one in Stratford on Avon on 16 January if you'd like to come along? You can find out more about the meeting at heartrhythmalliance.org/aa/...

Kind regards

Rachel

Arrhythmia Alliance Patient Services