I heard that a lot of people get bad side effects from certain AEDs (anti-epileptic drugs). Does that mean I should expect those same side effects if I take those medications?
Not necessarily. Everyone’s body is different and there are many different types of Epilepsy. Your neurologist should be able to provide you with more detailed percentages of people that get certain side effects, and how to safely handle them if you do experience them yourself.
Is Epilepsy contagious? I don’t want to stop hanging out with people that I normally see all the time.
No, Epilepsy is not contagious. Certain types of Epilepsy can be passed on genetically, but someone can’t catch it just from spending time with you. It’s a scary thing at first, having to tell people and not knowing how they will react. Part of that is because there are stereotypes and mis-information out there, so helping to educate your friends is a good place to start. Help them learn that they can’t catch it from you, but that they may be able to help keep you from getting hurt if you have a seizure when you are with them. Knowledge is power and takes some of the scariness away.
I just had a seizure. How long is my license taken away for and should I automatically stop driving right now?
In the state of MN, your license is suspended (not revoked) for a minimum period of 3 months following a seizure/loss of consciousness. It may be eligible to get renewed after 3 months, pending a recommendation from your neurologist. States other than MN may have different regulations, and these should be able to be found on your state’s Department of Transportation webpage. If you have had a seizure, it’s probably best to stop driving immediately until you consult with your neurologist regarding your particular diagnosis and talk about the factors that may have played a role in triggering it. Losing my license and that piece of my independence each time another seizure would happen was one of the hardest things for me to get used to, even though I knew after a time I would be gaining it back. Play it safe and protect yourself, as well as pedestrians and other drivers by waiting to drive until you have clearance from both your neurologist and the Department of Transportation.
Will a Ketogenic diet or other diet plan help me have less seizures?
It may or may not. Talking to your neurologist will help give you a better understanding of your particular diagnosis and possible triggers and certain lifestyle habits that might help you have fewer seizures. Everyone’s body is different, so there is no single hard & fast rule for achieving a seizure free life.
I’m carrying my meds around in a pill organizer, so that they’re always with me when I have to take them. But, am I allowed to bring my meds with me everywhere? Will I be asked to leave them behind or be detained to explain them?
I have never been asked to leave my pills behind & have never been told that I can’t bring them in somewhere. When flying, I bring my pill organizer in my carry-on (without the actual prescription bottle) and have never even been questioned on what my pills are. Airlines change recommendations from time to time, so it’s not a bad idea to have a copy of the prescription or doctor note if you have taken your meds out of the original prescription bottle in case you are detained by the TSA. If you are ever worried about having your pills allowed in somewhere that would be checking your bag, take a look at that company’s webpage or call ahead! Better to be informed than to be without your meds.
People ask me a lot of questions about my Epilepsy. Is it ok to just not want to talk about it?
Absolutely! It is completely up to you how much information you want to disclose to people. Remember, the more you share with people, the more they might be able to relate to your situation or at least help to support you. But it is definitely ok for you to say that you’d rather talk about it another day. Especially at first, it was all I could do to try to hold my head up and talk to myself about it, much less want to feel like others were shining a spotlight on it. But truly, those that asked simply were concerned about me and wanted to help. Even so, you get to decide how much you are comfortable talking about it and in what settings.
How do I tell my employer or other people around me to be prepared in case I have a seizure?
That is a hard one, isn’t it? Or when do you tell someone you just met about it? Since everyone’s diagnosis is different, everyone’s advice on this might be a little different as well. In my own personal experience, I have waited a month or two after being employed somewhere, or after joining a social group, before I tell them that I have Epilepsy. I tend to be pretty introverted, so for me waiting a couple months has felt most comfortable in the past. At that point, I let them know what to do in case I do have an emergency, and I make sure they have access to my Emergency Contacts. It is completely up to you how much you disclose and when you decide to disclose it.
Are there support groups available that I can talk to? I don’t know anyone else with Epilepsy and I tend to just feel like a burden to everyone. How do I connect with other people that know what I’m going through?
The Epilepsy Foundation has quite a few support groups listed on their webpage. There are also Facebook and Instagram groups for people with Epilepsy. These are an excellent resources to connect with others and help get perspective on your own circumstances. When I was first diagnosed, I didn’t know anyone else who had it either. And Instagram and Facebook groups weren’t even a thing yet. I wished they had been – they are a safe way to follow along digitally until you feel safe enough to start participating in the discussion and connecting. Feeling isolated and depression are not uncommon with an Epilepsy diagnosis, so finding groups you can identify with and get support from can really help.
I am newly diagnosed with Epilepsy. I read that I’m now not supposed to hold a baby, not supposed to take a bath in a room alone, not supposed to climb a ladder, not supposed to swim alone, not supposed to use power tools, and on and on and on… Is this really true? What am I allowed to do? I hate feeling like an outsider just because I have Epilepsy.
It can feel overwhelming at first, can’t it? Talk to your neurologist and try hard to be patient with yourself and take it one day at a time. When my nieces/nephew were born, I asked my neurologist if it was ok for me to hold them. She said that for my particular diagnosis, I could hold the baby safely as long as I was not sleep deprived and not experiencing a seizure aura. On the other side of that, is those who may not understand Epilepsy, and not feel comfortable with you holding a child. That is hard, but you have to try hard to understand that it isn’t meant to be anything against you, it is simply one of the learning together hurdles to work out. In that moment, it can be hard, so be patient with yourself and with others. The same rule applies for the other scenarios. Your best bet would be to consult with your neurologist. They will be able to give you the most accurate suggestions based on your unique situation and activities you most want to do.
I have the flu and am throwing up. I took my medication a few minutes ago and am worried I may have thrown it up! What do I do?
If it is during business hours, call your neurologist right away. They may suggest that you take your next dose early or that you retake the dose you just threw up. Everyone’s prescription dosage is very specific to their own diagnosis. If it’s the middle of the night, I personally would call the nurse helpline on the back of my insurance card. This has happened to me a few times in the past and the nurse helpline was very helpful. But remember that this was my own personal experience and should not be considered a medical recommendation; make sure to consult with your neurologist first before making any major decisions to potentially skip or double up on a dosage. One thing I always make sure to do, however, is to let someone know (usually my parents or boyfriend) when I am nauseous or have thrown up. If I’m somewhere out and have thrown up, we may decide together it’s best to not risk driving home and we coordinate a ride. Or if I’m home, it’s just good to have someone else there to help out when your system is already weakened with illness and your med schedule could be knocked out of whack.