New person

Hi my name is Julie, I am 43 and have a pacemaker. I have had my pacemaker for 4 years and it has changed my life.

I suffered with blackouts for about 30 years and was diagnosed with epilepsy but after have a lot of seizures in a short space of time the Dr did some more tests and found it was heart related and not epilespy.

I joined the patients support group STARS (syncope trust and reflex anoxic seizure) www.stars.org.uk after my daughter also started to have blackouts, she was only 2 back then in 1994, she now is 16 and last year also had a pacemaker. STARS has been fantastic and a real support to my family and me. I have also joined the Arrhythima Alliance who also help pateints with heart rhythum disorders, ICD and pacemakers.

I am so glad that I have found this group through reading a Daily Mirror article about a young woman called Caroline, her story is so much like mine. It would be so good to chat to you.

best wishes

Julie

5 Comments

New Friends

by Wannabe - 2008-05-16 02:05:59

Hello Julie - you've come to the right place to make new friends, gain heaps of advice and get all the encouragement you need. Welcome to you, and to your daughter. Hope you both continue well. Kind wishes, Wannabe

Hi julie

by bini - 2008-05-16 08:05:33

I too suffer from blackouts, my fainting is due to a condition called dysautonomia.
I have joined stars-us.org. The group is wonderful, I am trying to vollunteer my time and help spread the word about their website.

I am so glad you joined this site as well, everyone here is so wonderful and caring!

Christine

Welcome

by Pookie - 2008-05-16 09:05:31

Hi Julie and Welcome to the club.

You will find lots of support and wonderful people here. Don't miss the search feature (upper right) or the Chat room and the Member Gallery...there is so much information here.

Again, welcome.

And I just love your username!!!

Pookie

me too!

by mandogrl - 2008-05-21 09:05:12

I was diagnosed as epileptic for 45 years! Took anti convulsants the whole time unnecessarily. Never had a postivie EEG, but was told a lot of epileptics don't. Finally at 49 got correct diagnosis. Sure feels great to be off those meds, and have not fainted since PM. They used to say some of my "spells" looked like faints, and some had jerky arm movements, so I must be epileptic. omigod, I hope there aren't too many more docs ignoring the posibility of syncope, and throwing folks on anticonvulsants.
Welcome to the club!

It is great to be here

by smudge - 2008-05-25 08:05:36

Hi All

It is such a relief to know that others have gone through the same experience, wow 45 years as epileptic, where are you from?

I haven't quite worked my around everything yet, it is a bit more complicated than the STARS message board I post on. Has any of you heard of STARS, it is a patient support group for sufferers and their families with blackouts, it is fantastic and they have really helped me. Take a look at their site www,stars.org.uk

I will post again soon

Julie

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