Mis-diagnosis that threatened my whole family

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I was persistently mis diagnosed as having epilepsy my whole life until aged 33. I first presented age 7 in the 1970's. I blacked out during a swimming lesson and drowned in front of my mum. Luckily there as a Dr there who performed CPR on me.  It then happened a second time in another swimming lesson. A hospital mis-diagnosed me as having epilepsy. Anti-epileptic meds made me worse (what I was given is now known to increase the QT interval). After 2 years of blacking out continuing despite the meds and negative EEG's my parents and I agreed to stop my meds as they made me worse and and the consultant was confused why I wasn't getting better. I continued blacking out and gave up going to my GP as they didn't believe me despite being resuscitated 3 times by someone who knew CPR. I was also very embarrassed about it. As it was so normal for me I never phoned for an ambulance so in hindesight that probably didn't help. As an adult I worked around the UK, still blacking out, no GP believed me and kept going on about epilepsy as that was in my medical records. I said it wasn't epilepsy but did not know what was causing it. I had my diet assessed (I eat healithily) and another Dr said I had unresolved issues from my childhood causing it (I had the happiest & contended of childhoods). My sister started blacking out aged 24 so because epilepsy was now documented as family history she was also diagnosed with that. My eldest nephew blacked out on the sports field at school and he too was diagnosed with epilepsy because of the family history. Second time he passed out he was taken to a different A&E who did an ECG. LQT was spotted on that. His A&E Dr advised I have an ECG as I'd never had one. My GP where I was living at the time looked sceptical but did request one. Yep, positive ECG showed a lovely long QT interval. Cardioligist saw me there & then and started me on betas. I was aged 33 and had blacked out over 70 times by then. He said he was astounded I was still alive. Aged 34 I ended up with an ICD and aged 37 was genetically disgnosed with type 1 LQTS. Moral of the story: one incorrect diagnosis on your medical records has life threatening consequences for you and your entire family. I gave up going back to my Drs because I was made to feel like I was a hypochondriac. I should have persisted and gone with my gut feeling that it wasn't epilepsy, my diet, psychological issues, imagined..... My advice - persist, pester, persist & don't give up like I did. It is quite by luck me and my family members didn't die