By Amber Kaiser
Have you ever been in a situation where you needed to refill your prescribed epilepsy medication and you were running into challenges doing so? Whether it was because of finances, medication availability, or you were simply running late on your refill, it can honestly be a nightmare when you are taking medications for epilepsy.
Anti-epileptic drugs (AEDs) are prescription medications for people with epilepsy and each can have serious side-effects that affect people both physically and cognitively, which makes them especially important to continue using because if you miss just one dose, or have to stop taking them suddenly due to not being able to refill them, you’ll start feeling the withdrawal side-effects either within minutes or a few hours, especially depending on which drug(s) you are taking and how much you are on.
Often people with epilepsy are taking multiple medications at high dosage levels so, unfortunately, it can be devastating to miss even a single dose. Risk for SUDEP (Sudden Unexpected Death in Epilepsy) can also naturally become higher with missing medication.
After taking epilepsy medication for about 17 years now, I’ve personally had a few close calls of missing my medication for different reasons. There was also a time when I accidentally took my medication twice (because I didn’t remember if I had taken it–this was long before smart phones) and I definitely felt the side-effects. I also forgot to take my medicine once and my body undeniably told me there was something missing within just a few hours.
In my early years of taking epilepsy medications, I had a few very close calls of not being able to refill my medication (this was long before I knew anything about medication assistance programs and the Affordable Care Act didn’t even exist yet), and I did what I needed to do to figure out how to get it, including charging it full price and going through a program I found out about later with a private local pharmacy. These kinds of medications are really psychotropic agents, and just like it takes time for your brain and body to get used to taking them, the same happens after you have been on them for a while, and then all of a sudden your brain and body have to adjust to miss taking them, and you start experiencing withdrawal side-effects. AEDs often require showing your license or ID to pick up at the pharmacy and even have a limit on when you can renew them for a reason. It’s also heart-breaking that seizures can be a common side-effect of missing your AED medication, so it’s important to do whatever you can to keep taking your medication.
My recent run-ins involved not being able to transfer the medication from a different city, and for the first time, realizing that generic medications are made differently even when they have the same name. Soon after I moved back to Dallas almost 2 years ago, I had to refill my medication, and I had not been able to see a new doctor with my insurance. Even though I filled my medication through Walgreens, since it was an AED they weren’t allowed to transfer it, and they said I would have to actually get a new prescription sent in from a local doctor, which I hadn’t been able to schedule yet. Long story short, I didn’t miss a dose only because I had started the refill process about 10 days out, and when I realized what needed to be done a few days later, my family helped with picking it up and shipping it to me via FedEx overnight so I would get it in time.
The most recent challenge I had was after transitioning to a generic AED this year for the first time in my life (I had always taken brand names before), I learned within a few months that the manufacturer of the drug matters because even though it may have the same active ingredients, each company still makes the medication differently. I was taking the same medication name, but being generic meant it could have multiple manufacturers and due to side effects, I could tell a difference right away that one manufacturer worked better for me than another. And, when I learned that, after making some phone calls to a handful of pharmacies, my doctor and even the pharmaceutical company, I realized really quickly that some generic drugs can be easily manufactured and others may not be, and this one was difficult to refill because the manufacturer was actually running very low on stock.
Eventually, I found it by contacting my doctor and they connected me with a pharmacy I had never heard of before that was based online. Gratefully, I was able to refill it and get back on exactly what I was taking before, but now I know I need to start checking on it soon to make sure it’s available when I need to refill again.
Anyone taking epilepsy medication, I’m sure agrees that you often have to plan at least 2 weeks in advance to make sure you will not only be getting your medication, but that you’ll also be getting it on time. If the pharmacy is just late in filling it because of availability (that can easily happen, and I’ve had some close calls with that as well, sometimes it might just take them an extra 2 or 3 days to fill it), call your doctor’s office as soon as possible and see if they happen to have any medication samples. Pharmacies don’t do this, but your doctor’s office will if they have the medication available.
Here are my top tips and resources to help make sure you get your AEDs on time. Also, remember with Neureka, whether you are simply using our app, or if you have Neureka Sleep, you will get medication reminders and you can quickly update your medication list, dosages and notices to yourself and your contacts as needed.
When you are starting to run low on medication, I recommend beginning to go through the refill process 2 weeks out. If it doesn’t go through with your pharmacy, it is likely because it’s too soon to refill with your insurance and they’ll let you know the earliest date you can refill so mark that on your calendar. If there are any issues with them being able to refill the medication due to supply, they should let you know when you talk to them as well. If that’s the case, I recommend calling your doctor’s office about the situation as soon as possible. They may have some resources to help you find it. If not, call the pharmaceutical company directly to see if they can help you locate any pharmacies that carry it.
When you need help paying for it, most pharmaceutical companies have programs to help you get your medication. Call or email them directly and ask what kind of medication coverage help they have available. If you visit the drug website, they may also have something like a “Patient Savings Program” you can apply to and download the card to get savings on your co-pay if you qualify. For example: here is a savings program for Oxtellar XR and options of their coverage and payment assistance. Sometimes you also have to go through paperwork with your doctor’s office and if you have trouble finding any options online, I recommend contacting your doctor’s office. They should have resources and point you in the right direction. Most programs are based on your income. If your doctor’s office can’t help you at all, that says a lot (as I have learned over the years), and I seriously recommend looking for a new doctor. Both neurologists and epileptologists are available today. I’ve also learned recently that if you can see doctors in a hospital ranked as a Level 4 Epilepsy Center that is ideal. Even if you don’t live in the area, the pandemic has made it easier to have virtual doctor’s appointments, and most advanced hospitals have these options available now, so don’t let location keep you from the opportunity to see better doctors. These are golden nuggets of information for those of you reading this article; please take them! The main challenge today is continuing to have long wait times to see your doctors and we are working on that!
I interviewed Donna Stahlhut with Epilepsy Foundation of Texas over the summer and she said they have health programs based on income to help people with epilepsy, everything from covering doctor’s appointments to imagining and medication help at no cost. Find a local EF Chapter and see what programs are available near you.
Epilepsy Alliance America provides medication assistance. I recommend contacting them directly to see if there are any programs available in your community.
I recently heard about The Assistance Fund and they are a nonprofit who helps patients and families with financial assistance in their copays, coinsurance, deductibles and other health-related expenses. They also help cover medications for many different conditions. Just scroll down the list and select Epilepsy (Seizures) and apply to put your name on the current waitlist.
If you have healthy insurance and your prescription is still expensive, call your insurance company to check on the tier level of your medication. Sometimes insurance companies will consider changing the tier level depending on the medication. Speaking from personal experience, with a new generic AED that came out this year, I noticed the cost had not changed with my insurance, which made absolutely no sense to me so I called them to inquire. They submitted a claim with my question and within about 2 weeks, I got a letter in the mail that said my inquiry was approved and they changed the AED status from a tier level 4 to a tier level 2 with this new generic drug. This kind of decision affects both their cost and your out-of-pocket cost, usually lowering it for the better. I also recommend contacting your insurance company whenever you have questions about the drug cost. They may recommend you get on a new plan if it’s possible for you to change it at the time and they can also provide you with the resources for various government assistance programs.
The internet provides so many useful resources today. If none of these options help you with what you are looking for, try your own Google search and see what pops up. If you have questions, or need additional guidance to help you get your epilepsy medications, feel free to reach out to me (Amber) or our team at firstname.lastname@example.org.