Has There Been Any Responses From Someone Who Suffers From Musicgenic Epilepsy I Know It's A Very Rare Form 1 In 10 Million. | MyEpilepsyTeam

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Has There Been Any Responses From Someone Who Suffers From Musicgenic Epilepsy I Know It's A Very Rare Form 1 In 10 Million.
A MyEpilepsyTeam Member asked a question 💭

I have had this condition since I was 16 now 31. I live a very secluded lifestyle, I can't work because of fear of having seizures. I haven't been on any medication since none helped after I had my first two seizures. Any help or suggestion would be very helpful. There is a very long story about my condition that makes it difficult to put on this website. I wish there were a way of contacting someone at My Team Epilepsy.

posted February 12
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Breakthrough Seizures: Causes, Symptoms, and Treatment Read Article...
A MyEpilepsyTeam Member

Next time you visit your neurologist/ Epileptologist , ask him/ her if you are a Candidate for the VNS, DBS or RNS . They can help reduce your seizures, along with the help of the medication

posted February 12 (edited)
A MyEpilepsyTeam Member

Sean, I speak for our Granddaughter who my wife and I have raised since an infant she is so to be 32. Her story is very difficult to explain in detail but she was diagnosed with Musicogenic seizures at the age of 17. Several meds were tried with no luck some even brought on other issues. She can't work since music is everywhere and she has the natural fear of suffering a Grand Mal seizure which she has on numerous times. So her lifestyle is very secluded.

posted April 15
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
My seizures have been drug resistant for over 30 years so I have a Neurostimulator (RNS). I still have seizures but they’ve maybe improved.

posted February 12
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I’m sorry. I still live with my parents in my 40’s and can’t work nor drive so I know how she feels

posted April 15 (edited)

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