Hi. My name is Shane. I've just started college, and I stay busy! I am a single parent [father] and a member of my Highland Elementary’s PTO. I do Relay-4-life, help host a food pantry, participate in shoe boxes for soldiers and are currently raising money for “a walk for literacy”. Combine this with working and managing epilepsy and you might can imagine my full plate. I am sure that being in grad school, even if you are older then me, and might not have a child; your plate is just as full. The trail and error process that comes with finding the correct "seizure med cocktail" is a long, tedious, process. Often, in my cases, as well as that of my two very close epileptic friends, and two additional epileptic school-mates, it takes more then one med to control the seizure activity.

One thing that I want to note, that I wish SOMEONE - ANYONE would have explained to me - is that medications do not cure epilepsy in the same sense that penicillin can cure an infection. It only treats it. It prevents, but it prevents in the same sense that asthma meds do. Attacks will still occur. Medications however, do make epilepsy manageable and much easier to balance and adjust into the full plate that we have as our pre-established lives.

My current meds include Topamax 100 mg twice a day, Klonopin .5 mg three times a day, and Lyrica 75 mg three times daily.

Topamax which I have been on the longest has worked effectively for controlling partial seizures and also prevents the migraines that often accompany epilepsy. Three of the other four people mentioned above are also on this same medication. Topamax treatment usually begins with low dose tablet taken twice daily. Its then gradually increased in dosage to get better control of your seizures. The only side effect I have personally had with this medication is a weird numbing/tingling feeling in my fingers and hands that is similar to the feeling that your get when your foot has fallen asleep. On the best days, I don’t feel it at all, on the worst days, I feel like my entire hands and wrist are fat, swollen, numb, and tingling as if they have been injected with Novocain.

Klonopin is used to control my primary generalized tonic-clonic seizures as well as my myoclonic seizures. (I have myoclonic epilepsy). Klonopin is a benzodiazepine. Sometimes in a high dosage it can make you sleepy, forgetful, or in my case… the way I described it “Make my brain feel like its turned to mush.” I requested that mine be cut in half from 1 mg 3x’s tid to .5 mg tid. Your medication, Dilantin, is a better anticonvulsant then Klonopin; but I choose to go get off Dilantin because of its harsh long term dental side effects. I also liked Klonopin much better then my trail of Ativan, which is sometimes prescribed in replace of Klonopin, but had less seizure control for me, and made me feel “loopy”.

My last medication Lyrica has been VERY, VERY, effective at controlling my seizures. I have quit the medication twice in search of a replacement, and twice had it added as my “personal cocktail completion”. Lyrica eases post seizure pain, while effectively preventing seizures. Lyrica fights the adverse side effects of the Topamax as well. Lyrica however has a side effect. Its one that is difficult to tolerate. It makes you gain weight. This drug, despite its incredible effectiveness with not only myself, but my friends as well, is disliked for this reason. On Lyrica I gained twenty lbs, one of my friends thirteen, one close to forty. But once stop gaining the weight (all gained during the beginning months) the results in the end, may be worth it.

Keppra, while I have not taken it personally, did once discuss it with my neurologist. It was my understanding that it is usually taken twice a day, once in the morning and once at night. My doctor had warned me that depression was a side effect of Keppra, and that had scared me.

If you trust your doctor, then take his advice and trust that he is doing what is best for you. I would ask pharmacist his/her professional opinion – because I ALWAYS ask them. And lastly, I would listen to my own gut. If your instinct tells that you should try the switch then take the jump. Drug and med effects are individualized for everyone; and no one knows you – or your body – better then you do.

On that same note, be sure to listen to your body. As a student and a parent I know that putting your self and your physical needs last is VERY easy to do. But all-night study sessions, a series of late nights, and lack of sleep can increase seizures. You need to sleep your eight to ten hours if it’s possible. For me it is not possible right now. But I do shoot for four to six hours. Because I've learned that repeated nights on 1/2 - 1 hour of sleep patterns leads to days in the hospital. Drink plenty of water, get your far share of potassium, take a multivitamin, try not to skip a dosage no matter how busy or tired you may feel, and lastly don’t hide the salt. It took me a while to get all of those lessons down, but after being told over, over, and over again strapped to a hospital bed “you’re here because your body needed _______" (water/was dehydrated, magnesium, potassium, sodium, and/or sleep/you were just exhausted, people with JMC epilepsy HAVE to sleep…)...etc.

Best of luck,

Sincerely,

Shane.