Take a deep breath.
Now take another one.
You probably feel as if your world has turned upside-down, that family and friends are looking at you differently, and that your life has changed forever. I know I did when I had my first seizure.
Take another breath.
I’m here to tell it to you straight: It will take some time to adjust to the changes that you are experiencing and the way people may be acting towards you. The good news is that you can help make this transition easier, and you’ve already taken the first step. You’ve found this blog!
My First Seizure
For starters, not everyone will share the same experience. People will have their first seizure at different ages. If you are young, let’s say 11 or below, your parents/guardians will most likely dictate your medical treatment.
In some cases, a first seizure happens in your home, limiting the number of people who know about your new seizure disorder. This actually affords you some flexibility in who you let know and the time you choose to do so.
Unfortunately, it is not uncommon to have a first seizure in public or at school. If you have a seizure at school, your classmates may not understand what is happening. You may be brought out of the school on a stretcher and subsequently in an ambulance. You may be afraid of what they are going to think. Am I going to be made fun of? Am I going be labeled as “the kid who has seizures?”
The Animal that is Anxiety
Sometimes the amount of anxiety (worry) after your first seizure ends up being worse than when you actually go back to school. Your real friends will always be there for you, maybe even more so than before they knew you had seizures. People are probably going to ask, “How are you?” more often than you were ever asked before. Your friends may have questions like, “Does it hurt to have a seizure?” or “What should we do if you have a seizure?” I remember being very uncomfortable the first time I started getting questions like these ones. Eventually, though, they become almost second nature. Most people will be asking you questions, not because they think you are different, but because they just want more information.
If your first seizure happens at work, you will probably have some similar situations. An additional issue is what your employers will think. Your mind may flood with questions: Am I at risk of losing my job? Will responsibilities be taken away from me? Will people treat me differently?
The common factor here is anxiety. New experiences that feel negative and unpredictable cause a sharp rise in anxiety.
Fear of the unknown, right?
So How Do We Go About Making the Unknown Known?
How do we take control when we can?
I think it starts with getting good information. The first chance you will have to do this is when you get to talk to your neurologist. He or she is there to try to provide you with as much information as possible. That includes but is not limited to what type of epilepsy you may have, what the best medication for your type of seizure is, and what type of side effects might you expect. Ask questions until you feel satisfied that you have the best understanding of your immediate future. You may want to know when it is appropriate and/or advised to go emergency department after another seizure. It is also okay to ask a seemingly innocuous question such as whether you can play video games safely.
So, you’ve had your first appointment, been started on a medication, and have done your best to ask and get as many answers as you possibly can from your doctor. What’s next?
Well, you’re going to have to get used to taking medications every day. Some medications are taken once a day; some are three times per day. It all depends on what medication you are taking and in what formulation it comes in.
Do yourself a favor and get a pillbox. If you take medicine twice a day, get two pillboxes. I’ll tell you right off the bat, I used to hate pillboxes. I felt like my parents were always checking to see that I took my medicine, and they really made me feel different than everyone else. Initially, I did a poor job of filling it up every week. So, why do I recommend getting one? Going from not taking pills to taking them every day is hard. A new habit takes about 6-8 weeks before it becomes routine. The consequences of missing medication are real, and at this point our goal is to avoid more seizures. On the other hand, pillboxes give you a sense of control and responsibility. It shows maturity that you can manage to take pills and carry on with your every day life.
Medication Side Effects
You should be prepared to deal with the possibility of side effects. They come in all shapes and sizes, once again, depending on the medication and dosage you take. They can be as small as an upset stomach, to being extremely tired, confused, or very forgetful. Not everyone will experience the same side effects or the same severity, so your mileage may vary here. What’s important to know is that if you are experiencing difficult side effects reach out to your neurologist! There are over 20 different medications for seizure disorders, and sometimes it takes awhile to find the right one.
Never just stop taking your medications before speaking to your neurologist. Your body will have gotten used to taking them, and you will be at a higher risk of having another seizure by doing so.
Okay, so we covered remaining calm, how to deal with how friends and family may treat us, and how our employers may treat us. We touched upon the importance of talking to our neurologist, asking questions, and taking medications. Lastly, we covered side effects.
Being diagnosed with a seizure disorder is scary, but about 5-8 people out of every thousand have it. That means that about 2 million people are going through a similar experience. You are not alone, although it may feel that way at first. In another blog post, I will discuss the importance of branching out and talking to other people with seizures.
Be sure to check out my resources page for some great places to get started!
I would love to hear other advice for someone just starting off with a diagnosis of a seizure disorder?
What would you have found helpful when you were first diagnosed?