Hello

[EFY]

Hi,

Well, I found out this morning that a friend, aged only 19, died suddenly from epilepsy. Although I hadn't seen him for some time, he was a close friend while I was growing up; a lovely, funny guy. I just can't stop thinking 'he should still be alive'. He was at uni, and had a seizure at night. His door was locked so no one could get in to help him, which just makes me think his death may have been avoidable. So terribly sad.

I'm really here for info. My dad has had two seizures in his life. He's now 51: he had his first seizure while driving, at the age of about 26, I think. He had nothing at all, for years, until last year, when he had a second seizure. Both seizures involved convulsions, biting tongue, loss of consciousness, foaming at the mouth. He is fine, and the seizures don't seem to have obvious long-lasting affects.

Medics seem to just say he has epilepsy. But from the research I've done on-line, it seems epilepsy isn't a 'pure and simple' type of disease. My dad doesn't want to create a 'fuss', trying to out the cause etc. Could anyone inform me as to what sort of epilepsy my dad might have, and what might have caused it?

Thanks!

 

[Meetz1064]

Hi hello

and how do you do, EFY??

I'm Meetz, and it's very nice to meet you.

The seizures you describe are like some of mine---tonic clonics (aka Grand Mal). They're the ones that everyone remembers because they're so scary. He seems to have a fairly decent seizure threshold, if he's only had 2.

This link would be a good start for understanding the tonic clonic seizures:

Tonic Clonic/Grand Mal Seizures

There are plenty of triggers that could have caused the seizures--food, lack of sleep, head injuries, blood sugar, hormones, and more.

Why not check out the Kitchen and the Library for more information???

We did have a member from here, Danjor, die recently from SUDEP--that's why his screen name says "Playing with Angels" now if you run across one of his posts. Very sweet young man--he was 16. There's is also another member, Tinasmom, who is raising her granddaughter--who has epilepsy--because her daughter, Tina, died from SUDEP as well.

There are approximately 3 million people with E.....and we can use all the support we can get.

So feel free to kick up your feet, and poke around in all the nooks and crannies. Hopefully one of the others (YOOHOO, Eric!!! Buckeye!!) has some decent coffee or tea. My coffee is burnt AGAIN. I think I'm going to give up making it.

The is an awesome HOME that Mr B has built for us here. The dinner party is a blast too, so PLEASE stick around, there's plenty of friends to make.

Take care!

Meetz
:rock:

 

[Nakamova]

Hi EFY, welcome to CWE!

Technically, a diagnosis of epilepsy is made when someone has two or more seizures. The seizures can take the form of convulsions (called tonic-clonics), as with your dad, or they can show up as absence seizures, simple partials, complex partials, myoclonics, etc. Don't worry about what all these other kinds are, that's just to give you a sense of how many kinds of epilepsy there are. These days doctors will often refer to the epilepsies, plural, or just call them "seizure disorders". There are over 50 different seizure disorders currently classified.

The majority of seizure disorders are idiopathic, which means the cause is unknown. In your dad's case, with the seizures so far apart, it's especially hard to tell unless there was an obvious trigger in both cases. Given that he's only had the two, it's probably too soon to consider medication, but it is important to keep an eye on things, and make sure your dad doesn't have any more seizures, or hasn't been having seizures all along. If possible try and find out if there was any specific event, or circumstance that might have triggered this most recent seizure -- it could be physiological or emotional stress, an allergic reaction to food, a change in diet, an infection, a head injury -- there are a lot of potential triggers, and if you can identify a particular one, that's a great start.

Feel free to post more questions, and search the archives here at CWE. The members have a wide variety of experiences and insights to share.

Best,
Nakamova

 

[skillefer]

Hi EFY!

It sounds like your dad has seizures like mine. I have tonic clonic (aka grand mal) seizures. They are scary to watch and can really leave you wrung out afterwards. Your dad should go to a doctor and see if he can find out what caused the seizures. He might have certain things that actually trigger them. The most common triggers are stress, lack of sleep, poor blood sugar control, too many stimulants, a spiked fever when they were an infant, etc. Make sure that you are respecting your dads wishes regarding this. Some people only have one or two seizures, and then never have another one. Everyone has a seizure threshold. A point where they will have a seizure. For the average person, it's fairly high. For those with E, it might be lower. If he has more, then make sure that he gets to the neuro.

 

[RobinN]

Hi EFY -
My daughter also has tonic clonic seizures. Though we tried multiple medications, they caused more seizures and her quality of life plummeted.

We now control her seizures by making nutritional changes. It has made enormous improvements in her seizure threshold. Certainly something to consider, before jumping on the medication rollercoaster.