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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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

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Replies to "@marianne72 Welcome to our group at Mayo Clinic Connect! I'm glad you found us, and I..."

@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. 🙏🏾🕊️