What if others say they're afraid you'll have a seizure?

@earlylonghauler
That's great! Can you tell us more about how helpful that was early in your epilepsy journey?
I noticed you mentioned you no longer carry it—I'm curious what changed?
Chris

@marianne72
Hi Marianne!
Thank you for being so open and sharing more of your journey in this discussion. It's really appreciated!
The beginning of an epilepsy treatment journey isn't always easy and often requires life adjustments. After my first tonic-clonic seizure, my doctor at the time also advised me not to swim or go in the ocean—something I love. Like you, I live in a country (Brazil) with beautiful beaches and warm water. But these restrictions were temporary, just until my seizures were better controlled.
I haven't driven since my epilepsy diagnosis in 2019. At first, I really missed it, but I've adapted. Thankfully, I live in a neighborhood with lots of amenities nearby, so I can do most things on foot. Uber has also been a lifesaver.
I'm so happy to hear that Mayo was very helpful in finding the correct diagnosis and that you've been feeling so much better since starting treatment. You sound very positive, which really makes a difference in our epilepsy journey. Keep that spirit!
Please don't hesitate to reach out with any questions.
Chris

Good question. When I was first diagnosed I carried a piece of paper in my pocket with instructions on what to do / not do. Essentially, if I have a seizure, let it run its course, move things away that I might hit or hurt myself with. Also (very important) do NOT put anything in my mouth (old myths die hard). After about 5 minutes, once I’m back and alert enough, make sure I take the “emergency pill” which is always in my pocket, to prevent another seizure. If I’ve hurt myself call 911. I no longer carry the note, but if I am spending time with someone and have not explained this yet, I give them the quick rundown. Most family and friends appreciate the info - and they do need to know what to do and what NOT to do. People still think they need to put something in your mouth to keep you from biting or swallowing your tongue. It’s impossible to swallow one’s tongue, and anything put in the mouth becomes a choking hazard. Wishing you well!

@santosha, I love the idea of having it on the back of the phone. Keep it simple and easy to read. I like the idea of the business card for people you see regularly, but not sure that is applicable as much today as it would have been in the past. I really appreciate your considered response because it does make us stop and consider how it must be for those around us. Like my wife knows how to usher me out of Costco with minimal disruption. While my seizure response dog is great for me, others may view his response a little more directly. This is a tough one. While I was able to offer an assurance to my friend, it does make me consider that in some respects epilepsy has plenty of "second victims."

@santosha

Thanks for going to the extra work to specifically help everyone find these videos.

@methel
Thank you for sharing that video resource from the Epilepsy Foundation!
Your post prompted me to look at their first aid videos, and I found several helpful ones:
- An Overview of Epilepsy and Seizure First Aid (covers both focal and generalized seizures)

@dannoyes
Hi Dan,
You've touched on something really important here.
The first time I had a tonic-clonic seizure—until then, I'd only experienced focal seizures, which remain my most frequent type—I was at home with my husband. He knew exactly what to do, but later told me how distressed he felt watching it happen.
If my husband, who lives with me and understands my condition, felt that way, imagine what it's like for people who barely know about epilepsy, have never witnessed a seizure, or don't know how to help.
That experience made me reflect on how I approach this.
I started by telling close friends about my epilepsy—and thankfully, most embraced me. Later, I informed people I see regularly: my Pilates teacher, hairdresser, neighbors. I kept it simple: "If I have a seizure, call my husband."
But when I had my first complex focal seizure during Pilates and my teacher couldn't reach my husband right away, I realized this wasn't enough. I needed to provide clearer guidance in case of a seizure. I also started wearing a medical alert bracelet, though the information on it is still fairly limited.
But how do I deal with this with friends I haven't seen in a while, or with strangers?
I confess I am still thinking that through. Recently, I heard about a solution that might help some of you. Someone I know who has mostly complex focal seizures recently shared that he carries business-sized cards with his condition and what to do during a seizure. When he feels one starting, he hands the card to whoever's nearby. Of course, this only works for seizures with auras—not everyone has that warning.
Some friends have suggested putting this information on the back of my phone since it's always with me. I'm still thinking about it.
What's worked for you when a seizure happens around strangers or people you don't know well? I'd love to hear how you've been dealing with this.
Chris

@santosha Thanks for your welcome message and supportive comments. I am indeed discovering the support I need—plus a bunch I hadn’t realized I needed ;).

I had my first spell in mid-September—a kind of absence seizure, then I keeled over and off my chair in our Iowa kitchen. Ended up in the ER and was diagnosed with Stress Cardiomyopathy or Broken Heart Syndrome. After three days in the hospital, a bunch of tests, and a med change, I went home thrilled to know what I didn’t have. Doc was sure it was life stress and a close family member death and another’s diagnosis of breast cancer.

A month later in Guatemala where we serve, I had a second spell that my husband said was really like the description for a tonic-clonic seizure. ER again, they said my heart was healing fine, I should get my brain checked out. Soon afterwards , I had a regular six-month check up for Rheumatoid Arthritis (which I have a serious case of), fortunately at Mayo where I’ve been going for a few years. Consulting with RA and explaining the spells and talking it over, I was honored to get a Cardiology referral and an appointment in mid-December. Simultaneously thru my PCP and RA ARNP, we discovered I have hypothyroidism (which could have caused the seizures).

We returned to Guatemala for the few weeks until the Cardio consult and I had a third classic tonic clinic seizure on Nov 29th. Fortunately my husband and granddaughter were home at the time and got an ambulance that took me back to the ER for an overnight.

By the time we got to Mayo in December we had a million questions. Cardio docs were insightful and fantastic and confirmed it wasn’t my heart and they got me a neurology referral for the next day. We were astonished. An EEG followed, then a decision to study further with 2 1/2 days in the Epilepsy Monitoring Unit and finally they said they weren’t really sure which kind I had etc.

They recommended I start a low dose Keppra and, along with the new levothyroxine I take for thyroid, I am feeling so much better. More stable, more clear in the head, diminishment of other symptoms, and encouraged.

I can’t drive till May or swim ( a favorite), and am careful here in Guatemala to not overdo things. All in all, I thank God for saving my life, for the presence of my family, the amazing care I received at Mayo, and the things I’m learning about how to have a new life at 72. Thanks for listening, asking good questions, and for the honesty that’s so needed. 🙏🏾🕊️