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← Return to Adults with absence seizures
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Thank you for the feedback. I've worked as a Travel Agent for 45 years and am still doing so. I've been amazed I've been able to continue to work. Doctor tells me my job is like muscle memory after so long. It's getting harder each day and I can only hope I can make it to retirement in September. Three things have been the hardest. The first was to stop my family and friends from asking "Do You Remember?" They work hard at no longer using that phrase around me. The second has been giving up reading for pleasure. That stopped a long time ago and I now understand was the 1st indicator. It became exhausting to read. By the time I get to the end of a paragraph, I've forgotten the beginning and cannot maintain continuity. The last and almost the worst is who the meds have turned me in to. I've tried many of them and the side effects have been particularly bad. They've taken my laughter and joy away and made me angry and short tempered and caused blepharospams. Those involved shots around my eyes and lids. Eight for each eye until I figured out the cause and stopped that medication. I just hope the doctors decide I'm a candidate for RNS. I should find out soon.
Replies to "Thank you for the feedback. I've worked as a Travel Agent for 45 years and am..."
@absentsenior
My pleasure!
I'm so happy to hear you were able to continue working after your epilepsy diagnosis and treatment. What strength – God bless you!
Unfortunately, I couldn't continue my career after my diagnosis. I was working as a career coach when I was diagnosed in 2019 at age 48. I began noticing that clients would remind me of things they'd already shared with me – I wasn't retaining information the way I used to. I felt so embarrassed and realized I could no longer provide the quality of service my clients deserved, so I stepped away, hoping to return once I felt better.
After some time in treatment, I realized that returning to career coaching wouldn't be possible. But I've found new ways to stay active – helping with my father's business and caring for my mother, who has Alzheimer's. And earlier this year, I was invited to be a mentor for our group at Connect, which brought such a huge smile to my face! As you and doctors have well said, keeping ourselves active is like exercising a muscle.
Like you, medications at first took away my joy and laughter with all their side effects. I also had eye problems with one AED I was on in 2019/2020. I should mention that I've been very sensitive to conventional medications since childhood and was mainly treated with homeopathy, which worked well for me until my epilepsy diagnosis.
A real turning point in my journey, besides finding my neuropsychologist, was finding the right doctor – one who truly listens and respects your body. I'm so happy to hear you had the same experience at Mayo Clinic! I found my right doctor in 2021 (I'm in South America), who started treating me with CBD oil and other alternative approaches, including seizure trigger management and lifestyle modifications. This reduced my seizures significantly with very minimal side effects and allowed me to restart my life. Unfortunately, after some very stressful events – my father was diagnosed with cancer last year – I experienced my first tonic-clonic seizures and had to add an AED to my treatment, keeping it at a child's dosage because of my high sensitivity to medications.
It's such a comfort to connect with someone who truly understands this journey – thank you for sharing your story with me! I'm praying that the doctors at Mayo Clinic will find a solution that brings you more relief and comfort. Please keep me updated!
Have a very nice week!
Chris
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@absentsenior I also get absent seizures. I was lucky to work till retirement 4 years ago. Within the last 3 years they have been getting worse with increased frequency. What meds are you on. I’m on Lamictal and Fycompa.