Laine's Brains Have Gone Wonky!!!!

[Elaine H]

Hi All

Just to say, if anyone is available to drop me a line today or tonight, after months of being seizure/aura free, for some reason,I had two massive Tonic Clonic Seizures this morning in bed! Luckily my partner was with me, and as he's a firefighter and paramedic, he's quite handy to have around!

As you can imagine, I am totally p----d off!! My tongue is very sore, and I was making gutteral snorting noises throughout, and the roof of my mouth and pallet are red raw.

Unbelievably, it is Easter Sunday, grey miserable skies, had a bit of drizzle, and this time last week, I was sat up the garden in a vest, weeding!

I shall try and practice what I preach, and stay positive, I've got a lot lined up for National Epilepsy Week May 17th -23rd, I'm on the radio, I've written a magazine article, and I'm hoping to get on national radio aswell. I see my surgeon in June so I'll see what he says. However awful a big seizure is, I can honestly say, that I would rather have one of those (when I'm not "all there" if you know what I mean?) than have an aura/Simple Partial seizure, and go through the terror of the taste,the fear and panic of them.

Hope you are all ok, and if anyone is as fed up as me today, drop me a line eh? Mark is on duty tonight, but will be home in the morning thankfully.


Best Regards to my fellow wobblers!!

Lotsalove

Elaine xxxxxxxx

[Bonito1947]

Hi Elaine, this is Ray, Bonito 1947. Sorry to hear about your last seizures. However, just treat them like they will be your last ones, and you will commence anew with a fresh outlook. Have a nice Easter, and I'll be praying for you, Ray.

[RobinN]

Sorry to hear of the set-back Elaine.
Have you ever studied the concept of "kindling"?

I hope you enjoy the rest of your Easter (guess it might be over by now as we are hours apart).

Good luck on your plans for Epilepsy week. That sounds awesome!

[Cint]

Hi Elaine,

I am So sorry to hear of your seizure, especially after having gone through your surgery. Believe me, I know the disappointment you feel, as I went through the same.

Let's hope yours is just this one, though, and just this one. I know it is difficult to stay positive, but just know that I will be thinking of you. It's a dreary day here, too, on this Easter day. Can you believe it, they're predicting some snow for us, too?! That's what we get here in the Rockies!

Knowing you, you'll do well with your plans for Epilepsy week.

Cindy

[Elaine H]

Hi Elaine, this is Ray, Bonito 1947. Sorry to hear about your last seizures. However, just treat them like they will be your last ones, and you will commence anew with a fresh outlook. Have a nice Easter, and I'll be praying for you, Ray.

Hi Ray

Bless you, thanks for coming back to me, I am feeling better, and as I'm a positive sort of person, I totally agree with you, that we must think each "wobbler" will be the last! I'll keep you posted, and I hope you have a great Easter, I've never really celebrated Easter, but as a keen gardener, I just adore this time of year, when the garden starts coming to life, and our enormous Magnolia tree is in full glorious bloom.

Talk again soon, and I've got my computer on all day and night, it's a great source of comfort when I'm alone, especially in the evening. Hope all is well with you, and I'm busy focussing on the forthcoming National Epilepsy Week, and doing my bit to raise awareness.

Best Regards

Elaine xx

[Elaine H]

Hi There

Thanks for your support, I've been looking into connections between epilepsy and the menopause, and as I'm going through it now, I suspected there was a possible link. It seems there is an enormous link, which is very reassuring, and doesn't mean that my "wobblers" are coming back to haunt me!

Got lots planned for Nat Epilepsy Week, articles, radio talks so far. Will let you all know how it goes, and lets hope I can help to educate the great British public!

Love & Best Wishes

Elaine xx

[Elaine H]

Hi Robin

Thanks for coming back to me. I'm feeling a lot better, but I must keep positive, not too good at being miserable.

I'll keep you posted on how Nat Epilepsy Week goes,and keep in touch.

Love & Best Wishes

Elaine xx

[RobinN]

I was just reading on an Atkins for Seizure list I am a member of, that sometimes breakthrough seizures are to be expected. The brain has to UNLEARN the act of using seizures as a coping mechanism.

I would also suggest the book Epilepsy: A New Approach
There might be some good behavioral techniques to use to help retrain your patterns.

[Chatter-box]

Elaine, your talk of gardens reminded me of my mother and her gardening passion. She just came home from the hospital/nursing-home last week after a year's confinement for numerous infections. She has not been able to even roll over since August, but when she heard she was finally coming home her first words to me were, "Bring me a seed catalog. I have to start planning the garden!" Elaine, you two would love to meet each other and share those little yellow pear tomatoes and all that gardening talk. Easter is a good time to sit back and get out all your seed catalogs and just have fun. But don't forget your pen. You can't read a catalog right without a pen for circling! Put all that seizure stuff aside and just have a quiet, good time today. Happy Easter, Elaine.

[flinnigan]

Hi Elaine,

I don't know how I missed this post. Sorry to hear of your wobbler. (I love that term). I've been watching for you, as I'm really contemplating surgery and I watch everyone here to see how they do post op. There really doesn't seem to be any real answers. It's so frustrating. Is there any one here that has had long term surgical success? There's so many people here who are anti surgery. Thanks for all you do.

[Elaine H]

I was just reading on an Atkins for Seizure list I am a member of, that sometimes breakthrough seizures are to be expected. The brain has to UNLEARN the act of using seizures as a coping mechanism.

I would also suggest the book Epilepsy: A New Approach
There might be some good behavioral techniques to use to help retrain your patterns.

Hi Robin

Wow, I'd never thought of my epilepsy that way before, and the brain having to literally "learn" how to not use seizures as a coping mechanism, that is amazing and I will look into that,

Had a few more since I last wrote, but I'm gradually getting there, and with this wonderful weather we've been having here in the UK, I feel like a different person when it's hot!

There is it seems, and amazing connection between menopause and epilepsy too, and I'm looking into that too, each day it seems, I learn something new about the mysteries of our brains,and it never ceases to amaze me.

I hope all is well with you, and keep in touch won't you? This website has been and continues to be such an incredible support to me. I'll let you know how National Epilepsy Week goes here in the UK, and I just hope I can help to make people more aware of this fascinating condition.

Best Regards

Elaine x

[Elaine H]

Hi There Flinnigan

Great to hear from you! Michigan eh? Wow, I've always wanted to visit the States, we are gradually working our way round the world, so far, Egypt and Hong Kong have been my favourites, I'll get to the USA soon, have to get back to work first!

So, you are facing possible surgery eh? Go for it! You were asking if anyone had had successful surgery, well, this was my second lot of brain surgery, the first was Sept 2000 and I was seizure free for almost five wonderful years!!! wow, I was a new person, I passed my driving test first time, got a great new job, and life began really, we brought a lovely house together, and had a few wonderful holidays, I used to talk about epilepsy and me like someone I used to know, it was strange, but life could not have been better.

I really don't want to put a downer on this, but the seizures started again, and no one could really tell me why, I never once regretted having the surgery, being a woman who likes to take care of her appearance, I was more concerned that my hair looked a mess for a while than the seizures coming back or a little bit of pain, and believe me, it really didn't hurt that bad, and I'm so not just saying that! The way I look at it, I felt it was an honour to be told that I was suitable for the surgery, a lot of the guys I was in hospital with could not have surgery, and were basically stuck with epilepsy, it would have been unfair for me to have said no to the operation, when they would have given anything to have the chance at least.

This second operation was on the same area, but to remove my right Hippocampus, this is the part of the brain that looks after emotion, spacial awareness, short term memory, and is part of the Limbic System, the brain so fascinates me. I jokingly asked them if they wouldn't mind putting a zip in for me, just in case I had to go back again! I was still having seizures a while after this second operation, but then they completely stopped for ages, and pleased to say that the worst part of my epilepsy, the auras completely stopped. Now I've had a few tonic clonics which is weird, as in twenty three years I'd only had half a dozen of them altogether. Being forty five, and going through the dreaded menopause is really not helping me, I've read quite a bit on it, and it seems there is a massive connection, all my "women's bits" are playing up, and emotionally I'm a bit of a wreck at the moment, I keep bursting into tears for no reason, and it's usually a large red wine that makes things right again!!

Anyway, I hope I put a smile on your face?? That's what it's all about, I promise, I will get my book typed up and published, I just cannot sit indoors when the weather is like this!!! I hope that you are ok as you read this, and smiling and upbeat? stay positive, take every chance you are given, and please keep me posted as to how you are doing? Talk again soon.

Best Regards

Elaine x

[flinnigan]

Thanks Elaine,

I finally realized that people who have had great success tend to move on and don't share their success stories, but those who are still having problems would still be here looking for answers. I'm not as scared to go ahead.

I may have been a "little" PMS'y yesterday well maybe more like a lot, feeling much better today. I can't do the red wine thing anymore but I had a couple beers.

Thanks for your support. Bless you.

[ashmstng]

Hey Elaine,
I sorry to hear you had seizures. But you sure sound positive. Keep your positive attitude moving as always. Your a very strong woman. I am looking forward to seeing how your book turns out. God Bless.

Hey Flinnigan,
As Elaine said she is right. I feel the same as her. I had surgery on May 22nd 2008. So far no seizures. I know everyones story is different. Just make sure you talk to your neurologist on what is best for you. Me, Elaine, and many others have had brain surgery. Everyone had different seizures. So you never know what the outcome can be. I am so happy that I went for it. The beginning was hard until I heard I was a canidate knowing it can change my life. Just now that it has almost been a year of no seizures has been the best feeling ever. Now I am ready to get my license (waiting for my paperwork to be filled out by my doctor), then going to school to be a X-ray Tech or Medical Assistant. Plus to help others with the same condition as us.

[brain]

Elaine, sorry for my late posting, but how have
you been feeling lately? I hope all has been quieted
and going well!

[flinnigan]

Thanks ashmstng,

I'm feeling better about the whole thing. I had 7 seizures in the last week 16 so far this month. At least I may have an option. I'll keep everyone infromed.
Thanks again

[BuckeyeFan]

Sorry to hear about the set back Elaine. Stay positive and enjoy that b-day that is coming up real soon.

It is great to hear that you are going to be so busy during your epilepsy awareness week.