So they prescribed me Trileptal

[dmnckvrs]

Hi guys,

So I've had an ongoing thread up in The Foyer for a while now to journal all my symptoms/get some support (which has been awesome by the way, can't thank you guys enough).

So to make a long story short, my neurologist thinks I'm having complex-partial seizures and prescribed me Trileptal to take after my upcoming EEG. School/work requires me to constantly be on the ball and I'm very hesitant to start taking this medication during the last month of school. How have some of you guys responded to it? Also, is it normal for a neuro to just put someone on an epilepsy medication without definitively knowing its E. I don't know, maybe I'm just in denial about it. Sigh..q

 

[Nakamova]

Sometimes the docs have to make a "best-guess" diagnosis, rather than a definitive one. This is often the case with partial seizures, since they are trickier than full-on convulsive seizures. If you try the Trileptal and it helps, that will provide confirmation of the diagnosis. But I understand your reluctance. You should make sure to ramp up slowly to minimize any side effects, and get a good idea of how you are feeling at each level.

These CWE links may be of interest:
http://www.coping-with-epilepsy.com/forums/f23/what-kind-side-affects-do-you-have-trileptal-17573/
http://www.coping-with-epilepsy.com/forums/f23/how-much-trileptal-do-you-take-6994/
http://www.coping-with-epilepsy.com/forums/f23/trileptal-side-effects-acne-17199/
http://www.coping-with-epilepsy.com/forums/f23/anxiety-trileptal-17305/
http://www.coping-with-epilepsy.com/forums/f23/starting-trileptal-monday-17159/

And you may find this link helpful as well: http://www.askapatient.com/viewrating.asp?drug=21014&name=TRILEPTAL

 

[KarenB]

A lot of times EEGs can't give a definitive answer as to whether or not you have epilepsy. For instance, my son often has normal EEGs, but has horrible seizures (it took years to get one caught on an EEG).

Everyone reacts to different medications in a different way. My son, who is almost 9 years old, was on Trileptal for about 3 months when he was 6 years old. He had dreadful side effects -- mostly psychological. Trileptal is also used to treat some disorders like bipolar, but it can actually cause these types of symptoms in normal kids (I think this sort of paradoxical reaction is mostly restricted to children -- so if you're college age, you're probably ok). But in his case, he became very violent (Diazepam and Keppra also had similar effects with aggression), and he also became super-hyperactive, to the point where he couldn't sit in his chair for more than 10 seconds, and began to manifest a lot of autistic traits. It also didn't work for the seizure -- made them worse.

I'm thinking...you've probably only got...what...one or two weeks more of classes before Christmas break? You might want to get through exams, and then start the meds during Christmas break. In the meantime, you could take some "natural approaches" to seizure control, which won't interfere with your cognitive level -- such as cutting out alcohol, caffeine, sugar, and reducing your carbs (try eliminating wheat), and adding in some supplements, such as selenium, B6, magnesium (right before bed) and making sure you get at least 7 hours of sleep each night.

 

[Cint]

I took Trileptal about 10 years ago and it did improve my seizures and mood (as stated before, it is also used for mood disorders). But I had to be taken off this med because it can also cause hyponatremia (low sodium). As Nak said, make sure you titrate slowly so you'll experience minimal side effects.

 

[dmnckvrs]

Thanks, that's exactly what I'll do for the time being. I keep seeing things for 'ketogenic diets' around here. I've followed a diet for the past 2 years or so that involved me only eating complex carbs like beans, lentils, and brown rice/wheat sparingly. I'm not sure if there's a correlation, but I started to eat more whole grain wheat products towards the end of the summer when this first started happening.

 

[bandmom]

Hi dmnckvrs,
My daughter's first epilepsy medication was trileptal, and she took it all through high school. It never seemed to have any cognitive effects on her, no problems with school work at all, she was a top student and completed a year's worth of college credit while in high school. Worst side effect for her was double vision, almost every day for an hour after taking her morning dose. That did cause her to miss classes some mornings until she felt better.

 

[KarenB]

With regard to diet, gluten (mostly found in wheat products) seems to be a seizure trigger in a number of people, as does alcohol and caffeine (also MSG and some artificial sweeteners -- Stevia is ok, and also Splenda, I think).

Reducing or eliminating sugar from your diet (and moderating other carbs) can help to regulate blood sugar. Highs or lows in blood sugar can sometimes be a seizure trigger. To keep your blood sugar at optimal levels, stick with yuor habit of eating complex carbs (in moderation), but I would recommend taking out the wheat products (at least give it a trial for a week or two to see if it makes any difference).

The Ketogenic diet (which my son is currently on) is an extremely strict diet, which is very high in fat and low in carbs with moderate protein. It also keeps the blood sugar low (but you have to check it to make sure it isn't getting too low). This is a diet that more appropriate for children than adults, because of the extremely high fat content (usually for every gram of protein or carb, there's 3 or 4 grams of some sort of fat). It virtually eliminates all grains, all sugar, and most fruit except the low-carb fruits such as berries, star fruit, and melon. Because it eliminates grains, it eliminates gluten, a common seizure trigger. Leafy grean veggies are fine, and others ok in moderation, except for potatoes and sweet potatoes.

The Keto diet works by changing the brain chemistry, and actually has some healing effects on the brain neurons (unlike any of the epilepsy meds). It is just as effective as any of the epilepsy meds out there (more effective in the cases of certain types of epilepsy), but the high fat content makes it a bit inappropriate for adults. However, it IS effective for adults, and some are currently on a "modified" Atkins diet for seizure control.

However, the Keto diet needs to be initiated under the care of a physician and experienced nutritionist (easily found in your location). Kids usually have to be admitted to the hospital for several days. And if you decide to give it a go, you need to start it during a school break, because the first week or two, one usually experiences flu-like symptoms as the body adjusts. But, the good thing is, that it does seem to enhance cognitive function for a lot of people.

Something else you might want to do right now is add in a little fish oil -- some evidence that it can be helpful with seizures and will also boost cognitive function for upcoming exams.