Long-time STARS member Julie Fear, was misdiagnosed with epilepsy for most of her life. She wrote about her experiences in Newsletter 17 (see website, Nov 2002 for back issue. Hard copies available using publications form opposite) After not being able to drive or lead a normal life, Julie is now looking forward to a New Year free of blackouts after finally receiving a pacemaker. She’s updated her story for us.

After being told I had Temporal Lobe Epilepsy for 27 years, I was finally given a correct diagnosis of Reflex Syncope in September 2003, by STARS patron, Professor Chris Mathias.

On 23rd of September 2004, my life changed for ever. I was visiting Manchester and unfortunately had a Syncopal attack. I was admitted to hospital and was lucky enough to come under the care of Dr Adam Fitzpatrick (STARS Newest patron). It was decided that I needed a pacemaker and Dr Fitzpatrick performed the procedure later that day.

At 40, my life is only just beginning. It has opened up many new opportunities for my whole family. My parents, in their mid sixties, can now also relax and have a life which was always difficult for them. As parents we never stop worrying about our children and it has been the same for them. I now have a husband not a carer; for the first time ever he has gone to work and not had to worry about what he was going to find on his return. I have applied for several new jobs I just wouldn't have considered before as I was always put off by the medical questionnaire that came with every application form. With my new found confidence, I don't think twice.

I have new found freedom as I am now allowed to drive again, rather than relying on public transport.

In the past I suffered severe bouts of depression and spent a great deal of time avoiding socialising, most of the time it was because I was afraid of having an attack. It was easier to stay at home and tell everyone I had other plans. This isn't the case anymore. I have been out a few times with the girls I work with and it has been great, it was lovely to relax have a few drinks and have some girlie gossip, it has also been nice for them to see a different side to me. I'm also planning to restart swimming again soon. Before my pacemaker, I couldn’t swim alone and my local pool said I needed to have someone with me or a letter from my GP to say it was safe for me to swim, which I couldn’t get.

Having this condition has put a financial strain on us over the last few years. Up until April 2002 I was working full time, but I found it increasingly difficult as I became more tired and I was having more seizures. My employer became concerned and I had to see an Occupational Health Doctor who recommended working only 18 hours a week. In the last few weeks because I have felt so well I have been able to increase my hours to 22 per week. It’s only a small step but I'm going in the right direction.

Until I was given the opportunity to have a pacemaker my life wasn't a life. I was constantly tired which I was told was depression, everything was an effort, because I didn't mix, I lost the art of conversation and my life was very dull. Now there is a reason to get out of bed in the morning, I can now plan the rest of my life. I'm not sure what I'm going to do, but now I have a choice I didn't have before.

I would be a liar to say I don't get depressed anymore, but it isn't because I have a pacemaker or Reflex Syncope, it’s because of all the years I have lost. I want to be 20 and experience life again - there was so much I couldn't do. Nightclubbing was difficult because I was ‘Epileptic’ and flashing or strobe lighting could cause a seizure. I want my wedding day again, drug free so I can remember it. I want the chance to be the mother my children deserve, not depressed, tired and a burden.

I can't thank Dr Fitzpatrick enough for giving me this chance of a new life. We desperately need more like him. Too many people are still being misdiagnosed and are missing out on a normal life. I accept pacemakers aren't the right treatment for everyone and each case is different, but if there is a need they should be able to have one.
 

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