Breakthrough Seizure after 20 years seizure and med free....

beener

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Hi all - I never thought I'd be posting on here but I'm so happy to have found the forum.
A bit of background...
I was diagnosed with epilepsy in my teens after a being hospitalized for pneumonia and having a very high fever and allergic reaction to medication - 2 weeks later the seizures started. My pattern was to have tonic-clonic seizures just before waking as well as some partial seizures during the day. I went on meds (I don't remember what kind) and my seizures were controlled. After being seizure free for a number of years I stopped taking my medication and, being one of the VERY lucky ones, had been seizure free for more than 20 years....until Sunday.

This past Sunday I woke up, got up and had some coffee (normal) sat down to do some work at the computer (normal) and woke to my husband over top of me explaining that I had just had a seizure (poor guy).
There are many things that could have triggered it (e.g. I was drinking the night before, I slept badly, I drank a LOT of water before bed) but these are all things that I have done, more than once, over the last 20 years so why now and why would it be different from my previous pattern.
I did not go to the hospital after the seizure but went to the doctor the next day. I have had blood tests and been referred to a neurologist (waiting to hear back about an appointment).

I guess I'm just looking for some positivity, encouragement and other people in a similar situation.

Thanks!!!
 

N Sperlo

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Hi Beener.

Welcome to the forum. 20 years, huh? Just goes to show you that some things change. I had stopped taking my medicine for around three years before my epilepsy came back. The good news was that I was controlled rather easily. Hopefully that will be the case for you.

You've had them under control before. It should be just as easy to get back to that point. I ha had to make some minor changes with my medicine, but I got there.

Good luck and welcome once again.
 
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I can relate very well--I had seizures when I was younger and was on meds but was seizure free for 17 years. I was on a very low dose of meds and often skipped taking them, still with no problems, and this year, started having seizures again, probably due to a head injury, but seizures are unpredictable and can come back with little explanation. Hang in there and know there is lots of support to be found here!!
 

CQ:)

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Hi beener,
Welcome to CWE.
Sorry to hear that your seizures have returned but it is great that you went 20 years seizure free & med free.

I can also relate as I was 1st diagnosed with epilepsy when I was a baby & had regular tonic clonics until I was about 3 but was kept on meds until I was 7.
I went 21 years seizure free until May 2002 when I started taking seizures again.
My Mum rang me 1 Sunday morning, I had no idea who she was & was really confused, she got worried so called my neighour who checked on me & I didn't know who she was either so my neighbour rang an ambulance & I was taken to hospital.
At 1st the drs had no idea what was wrong then I had a tonic clonic in hospital & they realised my seizures returned.
I was referred to a neurologist who I saw the following day, he did an EEG which showed seizure activity & I was put straight on meds.

After that I mainly took simple partials/complex partials but had the odd tonic clonic. My neurologist tried me on 5 different epilepsy meds, none of which controlled the partials so in 2009 he suggested I look into surgery.
I saw an epiologists mid 2010, had the pre surgery tests that year & had my surgery in 2011.
My seizures are currently under control except for the odd funny feeling which the specialists believe is more my brains way coping with stress instead of having a seizure.

As the others have said you'll find a lot of great support here :)
 
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beener

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Thanks guys - the support is very very much appreciated. Hopefully I'll be able to get into see a neurologist sooner rather than later but they said that it could be a couple of months.
 

kaelieh

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I was 4 years seizure and medication free. My neurologist told me sometimes it just happens, that she'll have patients that'll go 20 years and then have one. This second round has been worse then the first, 20 years I applaud you on that.

I'm surprised seizures don't qualify as an urgent situation to get you on with a doctor sooner. The day after I had a seizure the ER made sure I had a follow up the next day with a neurologist.
 

beener

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Thanks kaelieh - perhaps it's b/c I didn't go to the hospital when I had my seizure. I think that I will follow up with my doctor to try to get into the neurologist more quickly.

Cheers!
 

Belinda5000

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Hello beener
welcome to CWE.

I'm happy for you that you went 20years seizure free.
I've had sz's since I was like 1 but never been sz free untill I hit my40's 4 1/2 months was the most I ever went sz free.

I wish the best for you and that you get your sz's under control again.
 

Shandy

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Hi, I was seizure free for 24 years until 2012 when I had 2 tonic clonic. I was off meds for a few of those years but this year whilst on meds I had 2 more out the blue. Trying now to make sense of it all.

Take care :)
 

marika853

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Welcome Beener!
My birth mother lives in Vancouver. It sure is beautiful there. I started having seizures in 2006. My diagnosis : Stress, menopause, lack of sleep. From what I read here, if you've had seizures in the past, you will have them again. Some people go for long periods of time, like yourself and others have to stay on meds.
Hope that you can find some answers here. Everyone is very helpful and kind.
M
 
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