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The UKFibromyalgia Forums • View topic - Epilepsy, or not Epilepsy, that is the question...



Epilepsy, or not Epilepsy, that is the question...

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Epilepsy, or not Epilepsy, that is the question...

Postby Queenie_70 » Fri Dec 05, 2014 12:07 pm

I finally have an appointment with a neurologist on Friday the 13th of February, followed by an appointment with the epilepsy clinic on Monday the 23rd of February. I hope that it isn't epilepsy, as I watched my youngest suffer for five years with uncontrolled seizures until she died. At the end it was 17 hours of petite mal activity and NOTHING would give her rest.

Anyway, it seems I am the squeaky wheel, and when it comes to health care, that is what you need to be. The one that keeps going in and fighting the fight to get the care and appointments that are needed to make sure that you are as fit as possible, on the right track with medication, and finally, and I think most importantly, your mind is put at rest because you have been told the truth about your condition.

*Takes a bow*

(((good luck to everyone today who is waiting for good news)))
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: Epilepsy, or not Epilepsy, that is the question...

Postby FluppyPuffy » Fri Dec 05, 2014 12:21 pm

Hope these appts will set you off on the road to finding out what is behind the "attacks" {not sure what else to call them :-? :-? } Queenie :fingerscrossed: :fingerscrossed: :fingerscrossed:

Not nice things to be living with, esp after seeing your daughter thru something so awful :hugs: :hugs: :hugs: :hugs:

Hopefully, once you get those answers you're wanting, it will mean your wheel is a little less squeaky.....well for a short while at least :fingerscrossed: :fingerscrossed: :fingerscrossed:


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Re: Epilepsy, or not Epilepsy, that is the question...

Postby Patsb » Fri Dec 05, 2014 2:53 pm

Sending hugs x my youngest son is epileptic and I worry about him every day especially as he lives alone. :goodluck1:
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Re: Epilepsy, or not Epilepsy, that is the question...

Postby dazzleship » Fri Dec 05, 2014 10:42 pm

hi Queenie.

glad to hear you've got the appointments you've been waiting for. I do hope you find some answers and I'm keeping my fingers crossed for you.

good luck :hugs:
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Re: Epilepsy, or not Epilepsy, that is the question...

Postby UnderSiege » Thu May 28, 2015 10:13 am

Hi queenie.

Very sorry for your loss. I can't imagine how tough it must have been for you and yours.

I was diagnosed with epilepsy when I was 17 after having a series of fits from out of nowhere and I went through the whole run of tests and two different drugs until we nailed it.
The tests conducted under my Neurologist (said to be one of the best in the country at the time) were inconclusive and revealed nothing. I was having absences and full on seizures during which I would collapse, convulse, vomit and soil myself and wake totally exhausted with agony in the head and needing days of sleep to get right again... but it wasn't being triggered by flashing lights or any of the other things accepted at the time (this was 21 years ago and I have no idea how treatment and diagnosis has progressed since)

It wasn't until the Neurologist sat down and had a talk with me that he came up with a possible answer: I'd been having a really bad year. I'd left home to escape an extremely abusive father. One Grandparent had recently died and another was very ill. I'd recently finished school on the other side of the country and come back to my hometown to... nothing really and my younger brother was only 5 years old, my parents had no time for me except to give me s*** and I had no 'out'. I felt very isolated and had spent time on the streets.
The Neurologist had a theory that my seizures had been caused by extreme stress... which is why I've just described this to you. It's possible that excessive stress may be your problem. Fibro and/or whatever else you may suffer are no cakewalk.

Anyway, I got a drug that fixed the seizures and haven't had one (though I've felt close) for nearly 17 years. I still take the pills even though my GP has said I probably don't need to (even after 17 years I haven't forgotten how awful, scary and utterly disorienting fits and recovering from them is. It is the one thing I fear most) although I've cut the dosage by half but no more.

Funny enough, as an aside, the Neurologist learned that I'd recently been smoking something I'm not allowed to mention here and he actually said to me "Do so, if stress is the issue, it can only help with it...". Odd endorsement that, coming from a doctor...

Anyway, whatever happens, I hope you get to the bottom of things and all turns out well.

Best of luck and take care.
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Re: Epilepsy, or not Epilepsy, that is the question...

Postby Patsb » Thu May 28, 2015 2:38 pm

My 30yr old son had his first seizure aged 21 it came out of nowhere and just weeks after passing his hgv test .a life on the road was what he wanted and it was taken away in a heartbeat.he now can't drive at all.he had all the tests and stress was found to be the cause.unbeknown to me he had been having absences all his life and never said anything because to him it was normal.i feel so guilty I never noticed :cry:
He now lives in an adapted flat and still suffers seizures ( his last one was in February and before that Christmas Day ) they also leave him feeling exhausted cut and bruised for days.he is on anti depressants now.his worst one left him needing steel plates in his face he fractured his eye socket and cheekbone.once in town he felt woozy and asked a woman to ring 999 for him ( from his own phone) she turned her back and walked away :twisted: he rang me from hospital to tell me.i was so incensed and hurt I rang our local paper and they ran a big piece about us and epilepsy.he now wears a bracelet with his details on but I live in fear EVERY day of something happening to him. :cry:
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