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Mflint

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Hi everyone,
I'm kind of new to this whole seizure thing and don't have as much experience as a lot of you with it.

3 years ago I had 2 seizures , both within an hour's time. Came to in the hospital, since my kids freaked and called an ambulance.

It hasn't happened again and I though everything was going to be ok. Then I woke up last Sunday feeling funny. Actually I'd been feeling funny for a few days, but even more so Sunday. Then I had an aura. I began meditating right away and was able to stop in becoming a grand mal. That happened 3 times alltoghter that day.

Now my license is gone and I'm back in the neurologist's care. Not clear yet what they're going to do with me.

I know I feel very funny again today and it makes me very nervous. Afraid it's about to happen again and I won't be able to stop it this time.
 
H Mflint, welcome!

Do you have any sense at all what might have brought the recent seizures/auras on? Are you on meds? If so, was there any recent change in dosage or kind (going from brand to generic for instance)? If you're not on meds, are there any other recent physiological stressors that you can pinpoint? Some examples:

Fatigue
Infection
Dehydration/Electrolyte imbalance
Low blood pressure
Low blood sugar
Nutritional/metabolic issues
Food Allergies or sensitivities (MSG, Aspartame, gluten, alcohol etc.)
Environmental sensitivity (such as photosensitivity)
Hormonal shifts

If you can identify any triggers, that could potentially allow you to avoid meds or at least minimize the dosage.

Best,
Nakamova
 
Thanks Nakamova,

We're short handed at work right now due to a collegue being gone on rehabilitation, so I've been on duty a lot more hours than usual, and at very mixed up times. And my normal work hours are 48 hours per week. On top of that I've had to pull night duty 3 times a week for a while. I also work a second job, part time, to make ends meet, although I do that at home on my couch with my laptop. I'm a single father, so I come home and have to cook and clean. My schedule is so mixed up that I don't know whether I'm coming or going. I don't have any regularity in my life whatsoever, and very little time to relax.

I use as much of that relaxation time to go into that secret place of stillness and peace in me and try to re-charge my own batteries, but it's always just enough to get me through the next round, never enough to fully recover.

I suspect that has a lot to do with my seizures...

My neurologist tells me that the damage has been done already. Once the brain has gone this way and started having seizures there's no turning back.
 
I'm not on meds yet, by the way, but my neurologist told me the last time that if it ever happened again I'd have to start. I'll be seeing her next Thursday. I guess they need up to 2 weeks after a seizure/aura to be able to see anything on an EEG.

The worst thing is that I've had to give up my driver's license, for at least a year...and I need it for my work.

Still, I'm staying relatively calm. It is the way it is. I will take my time and change my life to fit the situation in whatever ways are necessary. I will make the best of it. Right now it's a bit much and seems overwhelming, but I know that's only an illusion. Stay calm, don't panic, work on it all step by step. Deal with it. But above all, stay calm. Sit down and cry your eyes out if necessary, then stand back up and deal with it.

Reading this forum has helped me realize that my situation is comparatively easy. I've read about people who have up to 20 seizures a day on bad days! And others who regularly have - opps, I don't know what it's called in English: Status Elipepticus. One wrote that he had a seizure that lasted 3.5 hours! The poor guy is laying in the emergency room the whole time having a seizure while the doctors pump him full of every know medication, and still it won't stop. And he has things like that on a regular basis.

All I have to do is find a new job and make sure somebody is here when I take a bath.
 
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Once the brain has gone this way and started having seizures there's no turning back.
Click to expand...

Not so sure about that. Kids put on the ketogenic diet have become seizure-free. Teenagers who develop epilepsy often "grow out of it." And CWE member RobinN found that by using a nutritional approach (rather than meds) has enabled her daughter to go seizure-free and med-free despite the negative prognostications of doctors.
 
My neurologist tells me that the damage has been done already. Once the brain has gone this way and started having seizures there's no turning back.
Click to expand...

I echo Nakamova's reply. Plus I'll add. There are some people that become seizure free on their medication. After 2 years of seizure-free, your doc may take you off the meds, and you may still stay seizure free for life. The quicker they catch your seizures (the fewer seizures you've had), the better the odds this may happen. You've only had 6 seizures, so never say never. :)
 
Hi Mflint,

I'm new to the forum, but not to seizures and I can say that if I had a chance to go back and deal with those first few months again, I would definitely get a second opinion and my focus would be on nutrition and exercise, as much as you can under the circumstances. Drop any coffee or alcohol, lots of fresh fruits and vegetables and a solid multi-vitamen. You already have an advantage of being able to anticipate a seizure, use that as a guide just as you would hunger pangs or fatigue. Good luck!
 
Hi Mflint-Am a newbie too (always will be 'til I can figure out which damn key is the right one). Stick with Nakamova & other "x-perts" on here my friend - They'll keep U right! - Take care; Col.
 
Mflint said:
My neurologist tells me that the damage has been done already. Once the brain has gone this way and started having seizures there's no turning back.
Click to expand...

Hi, I'm new too. This thing you said caught my eye. Your neurologist said this to you? I'm still trying to grasp my new diagnosis and still in the shock phase. I keep thinking it's something you can get thru and over...like the flu. :ponder: I guess it's wishful thinking on my part.
 
Hello Bindi

My neurologist told me that 3 years ago after I had 2 grand mal within an hour, all out of the clear blue with no prior history. After 3 months of EEGs and observation she said it was ok now, but I'd have to be careful. She said that once the brain has gone this way out it's always possible it will do it again.

In my case it turned out she was right. Only, I'm pretty sure I provoked it by working way too much and sleeping way too little and letting myself get into a state of exhaustion. And still I kept on working. It took 3 years

She didn't mean it wasn't possible to live without seizures. She just meant you should live just a little slower once it's happened.

So head up! Big things like this always look overwehlming at the beginning. If you keep your wits about you and you're heart as calm as possible you'll overcome the situation, step by step.
 
You know, I thought of something else, just some general advice. Keep a journal, either written or video, nothing fancy. Talk about everything, not just the stuff about seizures, but life in general. Do it as often as you have time and include your family and friends, what's going on with them. My memory of those early years is so sketchy, much of it I can't remember at all. It's like the seizures, several grand mals a day, just wiped my memory and I'll never get it back. It's something I wish I had done.
 
Thats a great idea Orinoor. As a matter of fact I do keep a journal, but don't write in there daily. Basically only when I have something to cope with. I think I'll start writing more.
 
Hi Mflint; Hope all is OK. Am in Departures @ Dusseldorf - so near yet so far, aye?!!
Keeping a diary is essential. As is said nothing elaborate. Mine just says Date; Type of Sz & Symptoms experienced (ie; flashing lights; aura; blinking eyes; dribbling; rigidity; etc.)
If it would be of use I could scan a copy of part to you. There's nothing secret on it - but don't forget to include dates of Drs appts/Consultants meets/Med changes, etc.

Col.
 
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