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

Posted by Dan Noyes @dannoyes, Jan 13 12:30pm

A friend recently came to town and he wanted to get together for lunch. On the way to the restaurant, he looked at me with trepidation and asked, "What do I do if you have a seizure?" Many of us are so used to epilepsy we don't even think twice about what it must be like for our family and friends to be with us. During the holidays, I once again saw some of my family giving me some distance, especially while I had a mini-absence seizure at Costco (not convulsive, but...well, you know). I'd love to know how you have handled this, especially getting together with people you haven't seen in ages.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Randy Shields @randallshields56

@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏

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@randallshields56 thank you everyone

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Doctors appointments today, their additional med now is another seizure med. Not what I wanted to hear. But going to follow their lead, i have a good neuroscience doctor that works well with my daughter's observations.

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Profile picture for Randy Shields @randallshields56

@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏

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Thank you

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Profile picture for Randy Shields @randallshields56

Doctors appointments today, their additional med now is another seizure med. Not what I wanted to hear. But going to follow their lead, i have a good neuroscience doctor that works well with my daughter's observations.

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@randallshields56 I appreciate how frustrating this process can be, but having a neurologist who is committed to lowering the incidence of your seizures can be a very good thing. I'm not sure if you do this, but I have kept a seizure journal whenever I start a new medication or have an adjustment to my dosage. I go one step further and also track all my medications just to be sure there are no unintended consequences.

For example, my PCP provided a new medication for another condition, which in turn had a profound impact on my seizure incidence.

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Profile picture for Dan Noyes @dannoyes

@randallshields56 I appreciate how frustrating this process can be, but having a neurologist who is committed to lowering the incidence of your seizures can be a very good thing. I'm not sure if you do this, but I have kept a seizure journal whenever I start a new medication or have an adjustment to my dosage. I go one step further and also track all my medications just to be sure there are no unintended consequences.

For example, my PCP provided a new medication for another condition, which in turn had a profound impact on my seizure incidence.

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Thank you for your response and a reminder.

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Profile picture for Randy Shields @randallshields56

welcome to the group, telling someone you haven't seen in years can have many outcomes , my friends would ask if thy needed to do anything if while with me and i would let them know just as i would let a family or close friend know. right up front. that's how my friends know me and wouldn't want less. if you are really worried about it have it out as soon as able to stave off future issues or more. course that is my opinion, i just don't like others being shocked unnecessarily if i can help it. a good friend would take it however you put it to them.

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Thank you for your response.

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