Price of Preventing Seizures

Posted on 08. Mar, 2012 by in Epilepsy

Epilepsy seemingly entered my life out of nowhere. I did not have a stroke. I was not in a car accident. I did not fall and hit my head. I did not use illegal drugs.

This January marked an important milestone in my life. I’ve been seizure-free for four years. I’m not incredibly superstitious, but I’m almost afraid to mention it for fear I’ll have a seizure and break the trend. Every time I go to the doctor (either the neurologist or my family physician) he asks if I’ve had any seizures lately and I’m always thrilled to say, “Nope!”

There is no cure for epilepsy, but it can be managed with drug therapy and/or surgery. Managed is quite subjective when it comes to seizure disorders, since going from 25 seizures a day down to five is considered a huge leap for some people even though no seizures is everyone’s ultimate goal.

The price of preventing my seizures is high. The anti-epileptic drug (AED) that I take runs right around $350 per month, which equates to nearly $4 per pill.

Unlike lattes at Starbucks or dining out a few times a week or buying new clothes, this medicine is a necessity in my life. It puts a burden on my family’s bank account. I can’t go without it or cut back on buying it. The pharmacy employees give me that pseudo-sympathetic expression when I swipe my debit card, but I can’t complain. I’ve met other people that are living with epilepsy who still have seizures every single day. I was able to have a child (when this journey first began, I was told I shouldn’t have kids.) I’m able to drive again.

So for me, the price of preventing seizures is well worth it.




5 Responses to “Price of Preventing Seizures”

  1. Angel 27 March 2012 at 12:49 am #

    i MISS YOU! Your blog looks GREAT, hope things good and you and your family is well! xoxo

  2. carolyn 14 October 2012 at 9:30 am #

    My son was diagnosed at age 13. He had a seizure at age 10, another at 13. He is now 16, and seizure free for 3 years. Do you mind if ask what med you take? would like to communicate w/you. thanks

  3. Melissa 14 October 2012 at 10:10 pm #

    Hi Carolyn,

    I have been taking Trileptal since this journey began. It is manufactured by Novartis Pharmaceuticals. It was simply is the medication that the doctors prescribed — I didn’t request it or anything like that. The dosage has had to increase the dosage since the first few incidents, but I have not had to add any additional medications like many people do. I have to go for blood work every few months because it can cause problems in some people. It sometimes causes my sodium levels to drop, which is one side effect that some people experience, so I have to put salt on almost everything I eat. I also cannot tolerate the generic version (oxcarbazepine) which was approved a few years after I was already taking it. I had some bad seizures after trying the generic but I have heard that people who are placed on generic all along (never tried the name-brand) are fine.

  4. Penny 17 October 2012 at 6:57 pm #

    I am so glad for insurance! I made the mistake of flipping the receipt one day and figured out that the meds I take would be a little under $2000 a month if I had to pay myself – heart attack! To be fair I do take 9 pills a day, but there is no way it costs them that much to make them (KeppraXR and Zonegran if you are wondering). I had surgery a couple of months ago so now waiting to find out if I can reduce or eliminate the drugs which would be amazing. And contemplating a new hairdo since its currently long on one side and grown out to an inch from the shave on the other – not a good look!!!!!!!!!!!

    • Melissa 18 October 2012 at 9:05 am #

      Yes you are right, the prices on our medications are crazy. Mine is expensive even with our insurance because I take the name-brand rather than the generic, so we have to pay a percentage of the actual cost rather than a flat co-pay. It’s even worse for the first five to six months out of the year, before I meet my prescription deductible, when I’m paying full-price. Good luck! Hope your surgery was a success and you can eliminate some of your medicines. Maybe it’s time to get a short hair cut, lol.

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