My mother developed epilepsy a few years ago, and until recently, her condition has been controlled reasonably well with medication. She’s starting to have a lot more seizures, and wants to look into some new options. Her current neurologist (who happens to be a jerk) is retiring (good riddance). While we’re looking for a new doctor, I’d like to educate myself a little better. The local library has next to nothing helpful. Could anyone point me to some good websites or books?
She is fortunate to have seizures almost exclusively at night. In 12 years, only two have occured during the day. Also, if you watch her, you can almost always tell when one is right around the corner. I used to be pretty good at predicting them. Now that I’m out of the house, though, she’s home alone a lot because my father works long shifts, many of them at night.
Although she has asked me to help her, I feel like I’m banging my head against a wall. She’s stubborn, and only hears what she wants to. It’s become obvious over the years that following a strict routine makes a big difference. If she gets enough sleep, goes to bed and gets up at roughly the same times each day, eats regular meals, and takes her meds on schedule, she has far fewer seizures. Lately, though, she’s subjected herself to a schedule that is nothing short of chaotic.
I’m worried about her, and I want to do what I can to help her, but she’s making it tough.
I’m sorry if I’ve rambled on, and I will deeply appreciate any tips anyone might have.
If you go to The Bighub and run a search for epilepsy treatment you will find these as well as many medical centers’ sites describing their treatment programs.
Good luck.
I have epilepsy, but fortunately I’ve only had a couple of seizures many years apart and medication has controlled them.
Epilepsy has many different forms which makes it so difficult to treat. For all of the high tech treatments and diagnoses I’ve had, a lot of epilepsy treatment works this way:
Doctor: “So, have you had any seizures since you started taking Medication X?”
Patient: “No.”
Doctor: “Then I guess it’s working.”
Seizure disorders can have so many causes that it’s hard for even the best neurologists can have a hard time making a diagnosis.
My best advice is to be persistent in finding a doctor who is willing to try different methods of controlling the seizures.
My husband had epilepsy when he was younger. It started around age 5, dropped off for a while and then recurred in high school, growing progressively worse (several episodes each day) until he finally had brain surgery which cured him.
He says he had “petit mal” seizures resulting from a cavernous angioma (sp?) – a collection of blood vessels that leaks blood into the brain, raising the iron concentration and causing abnormal electrical activity, if I understand him correctly.
He was thankfully referred to a wonderful neurologist who ordered him an MRI which revealed the problem. His parents were told that the best treatment centers were the Mayo Clinic and the Cleveland Clinic (where he ended up).
The neurologist has since revealed that such a complete surgical success is quite rare, but I just wanted to let you know that for some people it is a possibility. Regardless, my husband urges you to arrange an MRI if she hasn’t had one (it was the turning point in his treatment)!
I’ve had epilepsy since I was 16. Mine is well controlled with medication (haven’t had a seizure in almost 2 years now, but my EEGs still show some seizure activity, especially when they make me look at those damn strobe lights).
You say your mother developed epilepsy a few years ago. What was the cause? My doctor was puzzled by my seizures for a while (as I said, I was 16 when I was diagnosed–but that was when I had my first grand mal seizure). My doctor spoke to my parents at length, and determined that I had probably been epileptic all my life (used to have little space-out spells when I was a kid, probably petit mal seizures). But the grand mal seizures I started having followed a pattern. When I have them, they are 3-4 days before I start my period, or during the time that I am actually menstruating. My doctor finally determined that my seizures are, for lack of a more technical term, PMS-related.
Is your mom old enough to possibly be going through menopause? Perhaps the unbelievable hormone shifts that occur during menopause are the cause of the seizures. Just a WAG, of course.
Check out those links posted above, too. The Epilepsy Foundation of America is loaded with info, and they’ll mail you all the pamphlets & booklets that you want. You can call them, too, with any questions that you have, and they’ll either a)answer the question right there, while you’re on the phone, or b)tell you they’ll research your question, and mail you what they find (and they do follow through!)
Good luck!
Changing my sig, because Wally said to, and I really like Wally, and I’ll do anything he says, anytime he says to.
Anyone can have seizures under the right kind of extreme conditions. People with epilepsy just have them under ordinary conditions.
A number of factors, though, can make it easier to triger seizures - sleep deprivation, stimulant use (including caffeine), alcohol withdrawal, stress, external stimuli (rapidly flashing lights). Other factors may be that new medications your mom is taking could lower levels of her anti-seizure medications, or that something affecting blood flow to her brain intermittantly may make it easier for her to seize - this could be either a blockage in the carotid arteries, or poor flow to the heart, causing intermittant decreased overall blood pressure when areas of the heart wall stop pumping effectively.
Your mom needs to see her doctor for a comprehensive evaluation. While checking blood levels of her anti-seizure medicine & adjusting the dose may be a start, if the seizures aren’t promptly returned to baseline frequency, a more thorough evaluation is needed. I hope too, she is not driving; state laws vary on reporting requirements, but pretty much anyone with uncontrolled seizures is not supposed to be driving. The fact that most of her seizures occur at night does not justify her driving during the day. This is for her own good, as well as the good of everyone else on the roads.
I wish you & your mom the best of luck with this, Neenah.
Sue from El Paso
Siamese Attack Puppet - Texas
Experience is what you get when you didn’t get what you wanted.
My brother in law and a coworker have it. They both drive even though they are not controlled.
That was one of the biggest things between my brother and law and me. I refused to be in a car when he drove. He said it was my lack of understanding…He claims if he concentrates there is most likely no chance of siezure.
Seems to be a LOT of myths surrounding this disease.
My coworker (well former now) use to have lots of little ones, like for two or three seconds at a shot.
I have epilepsy, and the things that will nearly always guarantee a seizure are lack of sleep and stress.
If I miss getting at least a 6 hour rest at night, I’m going to have a seizure within 48 hours.
When I’m under unusual stress, I will most likely have a seizure in a day or so. Sometimes when I am under extreme stress I may have a seizure immediately after or during the stressful situation.
I am taking three kinds of medications for seizures and one for stress, but even so, there are times when it just isn’t enough to control the seizures. And NO, I do not drive! If the highways were all one lane with very high concrete walls on each side, I might be willing to risk my own carcass to drive, but I refuse to risk someone else’s life to accomodate my wishes.
The links offered above by the generous folks who posted them are the best source of info for epilepsy control, but the patient must be willing to cooperate in the treatment of the disorder.
Another possible problem with anticonvulsants is the effects of plain old “over the counter” medications will have on the seizure disorder and upon the anticonvulsant meds taken for the seizures. There can be some extreme interactions between seemingly innocent things like antacids and anticonvulsants. Even taking a Tums® or a Rolaid® within 1/2 hour of the seizure meds will prevent the seizure meds from entering the bloodstream. There are many many more interactions and “no-nos” that should be talked over with the pharmacist who fills her prescriptions.
Markxxx posted that his brother in law insists that that there's no danger of a seizure as long as he concentrates. I think you are smart to stay out of that car when he drives. His "concentration" may keep a grand mal from happening, but even a petit mal at 65mph is unacceptable in most cases. The people who drive when their seizures aren't fully controlled are only fooling themselves into thinking they're safe, and postponing the inevitable accident. It's one thing to be stupid, but stupid and selfish are a dangerous combination.
I will not even accept rides from my friends who ride motorcycles, because I fear what would happen if the passenger (me) suddenly had a grand mal seizure. It could kill both of us!
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**FixedBack**
"When learned men begin to use their reason, then I generally discover that they haven't got any."~~*G.K.Chesterton 1908 *
Cristi, the grand mal seizures started in 1987, long before menopause set in, and no one seems to have any idea why.
Majormd, I’ve read about things like strobe lights causing seizures, and I seem to remember something about a cartoon with a lot of flashing light stuff causing seizures in non-epileptic children in Japan, but I can’t remember where I read that. My mother stays up late watching tv a lot, and I wonder if there’s a connection.
She had a heart valve replacement about 7 years ago, and is on several medications as a result of that, including coumadin. She is very careful about taking OTC drugs and making sure there are no interaction precautions first.
She refrains from driving for six months after each grand mal seizure. The thought of having a seizure while going down the road at 70 miles an hour is scary.
Also, I’ve read that a ketogenic diet (low carbohydrate, lots of protien) may help reduce the frequency of seizures in children, but has little or no effect on adults. She has been sort of following this sort of diet off and on for about two years now, but I’m not convinced of the benefits. She ends up eating mostly red meat, butter, cream, and other foods with a ton of fat and cholesterol, with little in the way of fruits, vegetables and grains. She sucks down coffee and soda like there’s no tomorrow, and I can’t imagine all this is good for her heart or anything else. Thankfully, she started starting exercising a few months ago, and I think this has imporved her overall health significantly.
Again, I’d like to thank each of you who responded for the helpful links and personal experiences.