Recently told I had epilepsy as a child ?

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Hi, during a consult with the cardio a couple of weeks ago, he was going through my records and said that in 1996 I had epilepsy, EXCUSE ME, I am 57 and no one has ever told me that before.  He was really busy so did not press him for info but I have requested a copy of my notes.  I was in care at this time and my mum has passed and I have no one to ask.  I am now wondering whether the trembling, dizzy, weird going down in a lift like symptoms I have been going on about for years would be related in ayway.  I was told I have AF which causes some of these problems, but I remember in my 20/30's having really weird episodes when walking like dejavu and noticed a really odd sort of smell.  No one could work out what it was and it did disappear.  I will ask further questions when I get notes back, but out of curiousity wondered whether you can have epilespy that you grow out of. 

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8 Replies

  • Posted

    It sounds like petit mal seizures to me. I was traced with epilepsy when I was 9 and back then I don't recall having any ceizures but when I was 15 and sitting in school is when I had my first grand mal ceizure. Since then I have been on medication to control them and have not had any for 30 years. The strange smell and going down like you say happens to you, is the same for me. I am now 65.. Good luck and keep your chin up!

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    • Posted

      Thanks, I will be doing some googling.  I have never mentioned to anyone before about the smell in case they thought I was mad, so just go on with in it until told I had episodes as a child.  I will get my records and take it from there, as I have put up with feeling like this for years now and it would be good to understand why it is happening.  Take care
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  • Posted

    Hey! so those are symptoms of epilepsy and yes it is possible to grow out of it. 

    Unfortunately i cannot grow out of it apparently mine is for life. 

    I was diagnosed at 8yrs old now 21 and as kid growing up i was having seizure at least 1 - 2 times a year the last one i had was the worst and i almost died as i was in the pool at the time. If it wasnt for my mum diving in to get me i wouldnt be here today. 

    It is a scary thing but i would say you have grown out of it i would deffinately ask more questions when you see him next.

    Wishing you well and hope you get some answers soon x 

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    • Posted

      Thank God for Mum's, I will be asking about it once I have my records as it was rather odd to be told this and not have any idea about it.  I hope you keep well.  Take care.

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  • Posted

    In your case, AF, irregular heartbeats, is also related to seizures. AF can starve the brain of oxygen and cause a seizure. Or the reverse may happen. A seizure may cause AF. Do the seizures and AF coincide? With symptoms of déjà vu and a strange odor, your systems resemble epilepsy as the cause of seizures. Has your Dr preformed an eeg and an ekg. At your age, you’re unlikely to grow out of epileptic seizures. Has your Dr put you anti-seizure meds? 

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    • Posted

      Hi Steve, to be honest I never even knew I had epilepsy as a child until the cardio told me, but he never said anything about AF as a connection.  I have contacted the hospital for copy of my records as I have been complaining about strange dizzy spells and feeling of going down in a lift when walking for years, the GP's ignore me.  The strange smell and deja vu disappered in my 20's but the dizzy spells kept on.  I had a brain scan in the last 5 years and hopefully something would have been picked up their if related to my brain, I have not had an eeg or ekg, only ecg.  I have an appointment with GP next week to discuss all this and will report back.  Thanks

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    • Posted

      It might be worth your time to have an EEG done as they can tell a lot from that and can also see if you are on the right medication. They might want to refer you to a neurologist as they are more skilled in that field of medicine.

      Good luck!

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  • Posted

    well this needs investigating by a neurologist specialising in epilepsy really.

     

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