Epilepsy

Nikki31104 · June 2013

I was diagnosed with Epilepsy in 2002 but was too knuckle headed to listen to the doctor and take medication. In 2009 I had a huge seizure that landed me in the hospital for 4 days. Is there anyone else out there that deals with Epilepsy too?

jessjoye · July 2013

I have epilepsy too! I plan on sending you a friend request when I am done typing this... I found out in 2000 that I really had it my entire life, just never diagnosed. It is Juvenille Myoclonic Epilepsy (JME) and later on in life after having 2 daughters I found out it is genetic and I passed it on to my youngest daughter. I am noticing that tracking my food helps me to pay attention to when I take my medicine. Eating a decent amount of protein and less sugar works for me along with drinking plenty of water. Excercise, even just walking is better than nothing at all.

What about you?

chefstew79 · July 2013

I have it as well, luckily I only have major seizures once every five years or so. Been hospitalized a few times with broken jaws and teeth, etc.

starling01 · July 2013

I've had temporal lobe seizures since I was in my early 20's (40 years ago), probably because I was in 2 car accidents with concussions both times. I took phenobarb (and hated it). They disappeared in my mid thirties, then suddenly reappeared about 3 years ago after a horrible divorce. Lamictal controls them, but I still have them, just not as frequently. The meds don't make me gain weight. Eating too much did that. Lack of sleep will bring on a seizure along with stress. Intense exercise is a form of stress for me and will sometimes tip me into one, so I keep my exercise to long walks. That and my age make losing weight frustratingly hard and slow.

abetterluke · July 2013

I don't but my 4 year old son is epileptic. It's scary as hell.

papalito · July 2013

Starling01
Your situation reminds me of how mine was before it got worse. I mainly have temporal lobe seizures and because of how bad they'd gotten had to stop work and go onto disability after my VNS didn't work. Healthwise my drug cocktails see effects include exhaustion and I gained about 50 lbs during the worsening time from the overeating and poor diet habits to begin with. It's been hard to exercise because of the no bke riding, treadmill use and physical stress other kinds of exercise produces.

theepervette · July 2013

I don't but am very educated on it.

ryry_ · July 2013

There is new emerging research that a ketogenic (i.e. very low carb) diet has benefits for people with epilepsy.

https://www.epilepsy.com/epilepsy/treatment_ketogenic_diet

ETA: I'm no expert, ask your doctor if this is right for you.

abetterluke · July 2013

There is new emerging research that a ketogenic (i.e. very low carb) diet has benefits for people with epilepsy.

https://www.epilepsy.com/epilepsy/treatment_ketogenic_diet

ETA: I'm no expert, ask your doctor if this is right for you.

Not really new...but yes this works for some people.

Nikki31104 · July 2013

I have heard about this Ketogenic diet. I haven't done a lot of research on it.

Nikki31104 · July 2013

I have epilepsy too! I plan on sending you a friend request when I am done typing this... I found out in 2000 that I really had it my entire life, just never diagnosed. It is Juvenille Myoclonic Epilepsy (JME) and later on in life after having 2 daughters I found out it is genetic and I passed it on to my youngest daughter. I am noticing that tracking my food helps me to pay attention to when I take my medicine. Eating a decent amount of protein and less sugar works for me along with drinking plenty of water. Excercise, even just walking is better than nothing at all.

What about you?

I have the same type of epilepsy. My daughter also has it. Along with my little sister and two female cousins. My neurologist said that most times it will attach itself to a gender in a family and attack. Now every time someone in my family gets pregnant I pray for a boy. My brother and sister in law have decided not to have anymore children for fear of having a girl. I can't say that I blame them.

acstansell · July 2013

I don't, but my husband has Idiopathic Generalized Epilepsy. He is also medication resistant. It's a really tough disorder.

We've had some major challenges w/it in the last few years, but he and I will never stop fighting.

krouse83 · July 2013

For some reason my doctor hasn't diagnosed me with epilepsy, but I do suffer from seizures. They just say I have a generalized seizure disorder. We have no family history of them and I have never suffered from a brain injury. I have had them since I was 5 and have times where I have multiple grand-mal seizures back to back (as in 2 or 3 within a few hours of each other, and then more within a month or two) for many years, and then a period of no seizures for 3-4 years. The pattern is sporadic, but the feeling I get before the seizures is always the same.

I do cardio on a daily basis and don't follow a special diet. I just moderate my calorie intake. I have noticed that when I have low potassium, I have auras, so I tend to eat alot of bananas and stay hydrated to prevent feeling seizure-ish when working out. I do take seizure medications daily and truly do not know what I would do without them. I would just say listen to your body, and track. Since they have no idea what triggers my seizures, I have tracked for a long time to see if my diet or physical activity contributed to them. If your feeling "off" or something just doesn't feel right then don't exercise or push yourself with your diet.

The seziures can be scary for you and those around you. Its sad, but I have gotten used to them and it doesn't really affect my life that much. Just always be aware, listen to your body, listen to your doctor, and you will be ok!

Epilepsy

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