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

@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. 🙏🏾🕊️

@randallshields56 Sweet comments, Randy. To God be the glory for the ways we feel whole. Community makes all the difference for me. I’m thankful to find thoughtful and informed people who are in the big circle of epilepsy experiences. I will detail some incidents in response to Chris’s questions.

@methel Television and movies to the best stigmatization. Typically, they are the tonic clonic type. Many people think that epilepsy is contagious. 3 locations in the Bible refer to Jesus casting out evil from a few boys. In one location, what the boy was experiencing is notably similar to the Tonic Clonic type. Jesus cured him too.

@marianne72
Welcome to our group at Mayo Clinic Connect! I'm glad you found us, and I hope you'll find the support you're looking for here.
If I'm understanding correctly, you were diagnosed with epilepsy fairly recently. What you're experiencing with your family constantly watching and worrying that a seizure might happen at any moment is very common early on. I went through the same thing. But as time passes and your seizures become better controlled, that intense vigilance tends to ease.
Would you mind sharing what type of seizures you've been having?
Chris

@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

Thank you.😊

some day what comes out of our conversations truly makes me feel whole and
wanting more from your side of the fence, to know more about you. your
comments make me feel a little more whole at the end of the day. Thank
you.😌

I appreciate the hug. i was just told by my caregiver that something i see
as odd and maybe not good, can in her opinion be me healing and not seeing
it through her eyes. I have to remind myself regularly that it can be
another matter on its own. here is hoping you have a great day today.

@royanthony doesn't it feel like this is when we realize who are our real friends.