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What If You Have Undiagnosed Epilepsy?

A MyEpilepsyTeam Member asked a question 💭
Jackson, WY

I have grand mal seizures Myoclonic seizures but my neurologist and I have gone through every test in the book to find where the seizures misfire in my brain. We can not find it, no where? Any ideas?

January 7, 2023
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A MyEpilepsyTeam Member

Sadly, EEG's can only "prove" seizure activity if you happen to have a seizure during one. The last test I took was a 72 hour video EEG. You get hooked up to the monitor that records your activity. But, you also set up a video camera when you are at rest. I did not show anything /sigh/. The only time I showed activity was when I was hyperventelating during an EEG. And that was when I was not on medication yet.

January 10, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
Have your doctors talked to you about an RNS? I had several EEG’s and operations where I didn’t have a seizure. Now I have an RNS that does basically the same thing, However, the RNS is implanted in my head and it records my brain activity everyday so it’s like a 24/7 EEG. When I have a seizure the RNS records my brain activity and every night I get on the RNS monitor and put a wand on my head. It downloads any seizure activity and I hit send so all of the information goes to my doctors. When I go see the doctors we look at their monitor and see all the spots I had a seizure and gather info. I’ve had seizures for 31 years.

January 7, 2023 (edited)
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A MyEpilepsyTeam Member

Have you had a long term eeg? Your in the hospital and hooked up to everything like a normal one but you stay in the hospital. They take you off your meds, and sleep deprive you to force a seizure and see the part of the brain it comes from.
Lot’s of fun lol. I’ve had 2 of those done in 20 years. It can also show if you can have surgery to help with it.

January 7, 2023
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A MyEpilepsyTeam Member

I have had to many eeg’s in my life. I have had at least ten where I was stuck in a hospital. Once I agreed to stay in the hospital 🏥 for one. The last one is when I had all the electrodes glued to my head for a week, I was home that entire time. I hope eeg’s work for anyone else who wrote here. The biggest and best test finally came around that gave me the answer I wanted and needed. I had the depth electrodes test. That was a long test and did make me nervous, but I know My neurologist and trust him, got opinions from family etc. Finally I decided to have that test because it I knew that was the only thing that would give me the truth. So after the surgery, my brain had electrodes stuck inside it. I stayed in bed for 3 weeks then got the answer. I have seizures coming from both sides of my brain 🧠 so I cannot have any more brain surgery, at least not yet!

March 5, 2023
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A MyEpilepsyTeam Member

EEG'S don't only show seizure activity, but also shows any abnormal brain waves, such as slowing in areas, spike, sharps, asymmetric or asynchronous activity, sleep patterns, etc. It's best to see an epileptologist & have them set an appointment for long term monitoring in an EMU, where they can wein you off meds, do stimulations, etc. If there's multiple sharps or spikes throughout the EEG or phase reversals, that is where the abnormal activity is. Seizures are also different from epilepsy, so not everyone who has seizures will be diagnosed with epilepsy.

February 5, 2023

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