Living with epilepsy? Share your story on Mayo Clinic Connect

Having seizures or living with epilepsy affects people in different ways. Some people stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. Mayo Clinic Connect is an online community where you can learn from others with epilepsy and share stories about living with epilepsy and coping with the condition. You’re not alone. Join the Connect community and introduce yourself today.

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Living with epilepsy? Share your story on Mayo Clinic Connect
Introducing Mayo Clinic's online community for people with epilepsy:
Trying to live and cope with epilepsy? Mayo Clinic Connect has a community for you.

I’ve had epilepsy since puberty 1972 and it has been attributed to my high estrogen levels. Dr Herzog confirmed this in 1982. I was hoping it would abate after menopause but instead my brain began making estrogen. It was kind of a second puberty-age 56-my breasts increased in size! My seizures have never been controlled completely but my meds stave off the biggies. I now have semi-daily partials which are a pain. But I know how to deal with them and that they will pass and I’ll be fine.
One funny thing happened right after marriage- I got pregnant while on the pill.because dilantin and the pill counteract each other. My child was unaffected by the dilantin. My next preg was a severely deformed stillborn and 2 others were miscarriages. I went off dilantin and increased phenobarb to a extremely high dose. I had learned that this would only cause minor defects and not affect the fetuses brain. My son was born with a severe cleft lip/palate but no brain defects and I was thrilled!
The new meds now will help eliminate birth defect worries in any epileptic woman.and that is great. Epilepsy research is never-ending and I will always try any new meds. Epilepsy is a condition which affects the brain and should be looked at just like a heart condition. Meds for any condition will have their own side effects but will help eliminate the problem-which is great. The brain is far too complex to understand but research and new findings is just as complex-some are truly amazing. This is a good inspiration for anyone with a neurological problem to keep trying to cope as well.

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