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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Featured Q&A

Do You Follow A Specific Diet To Help With Epilepsy?

By A MyEpilepsyTeam Member 95 answers

Anybody Have Trouble With Remembering Instructions, Directions Or List Of Things To Do More Than Three? Does It Make You Frustrated?

By A MyEpilepsyTeam Member 91 answers

What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃

By A MyEpilepsyTeam Member 70 answers

Which Epilepsy Symptom Surprised You The Most?

By A MyEpilepsyTeam Member 163 answers
12462 questions

Connection Between Migraine And Epilepsy

A MyEpilepsyTeam Member asked a question 💭
Martinez, CA

Hello! Does anyone here have migraines that they think are linked to their epilepsy but feel they may have been misdiagnosed. I do not think they are two seperate
Issues. I have an auora, i get a severe migrane, If i cant get it under control it Almost always leads to a seizure inevidebley. If so. What are they doing for you?

A MyEpilepsyTeam Member

Hey, I get migraines constantly and it's usually followed by a nocturnal seizure which I didn't notice until a few months back. I had one last night which eased the pain from the migraine but left me… read more

March 20

Most Medication

A MyEpilepsyTeam Member asked a question 💭
Bulgaria

Hello!
Everyone in the group is on medication. It is most welcome at home. Outside of the home in an emergency situation, do you have medications available to take that will work for a short time to prevent a seizure before emergency help arrives? How do you take them?

A MyEpilepsyTeam Member

Take YOUR meds as prescribed

November 21, 2023

Diagnose With Epilepsy Out Of No Where.

A MyEpilepsyTeam Member asked a question 💭
San Diego, CA

I was diagnosed with epilepsy at 22. No injuries
Or anything. I wonder if anyone was also diagnosed out of no where and what medicine you’re on?

A MyEpilepsyTeam Member

I was diagnosed at three years old. I never knew the cause for 40 years. I felt it had to be my birth weight, 12 lb. 9 oz., being pushed down the stairs when I was two or a 105 fever when I was… read more

March 28
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VNS Hurt And Sz’s Occurring!

A MyEpilepsyTeam Member asked a question 💭
Piedmont, CA

Called office the afternoon the VNS was increased in morning. That afternoon had flurry of seizures!
They wanted me in ER if it doesn’t stop! Brother!

A MyEpilepsyTeam Member

My anniversary is February 2, 2024. The machine started activating this past November 2023.

January 27
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Is There A Medical Expert & Advocate Willing To Answer A Few Questions On Epilepsy Awareness And Removing The Stigma From It?

A MyEpilepsyTeam Member asked a question 💭
Green Brook, NJ

I have epilepsy and my son is currently doing a college project to promote epilepsy awareness, remove the stigma of it. He needs an epilepsy medical expert & advocate to contact in the next day or two to answer @ 4 questions for it. He would only need 1 - 2 sentence answers. Any help is appreciated.

A MyEpilepsyTeam Member

The #1 site
Locally --- www.epilepsy.com

The #2 site, is more for non-medical issues of Epilepsy.

International League Against Epilepsy (ILAE),
www.ilae.org

#3 has some good articles but I… read more

February 12

Does Anyone Else Have Trouble Getting Your Prescriptions Filled For You Seizure Meds Because Of The Meds Being "rare"?

A MyEpilepsyTeam Member asked a question 💭
Frankfort, KY

My neurologist has me on Briviact as my primary medication, no generic of course. I call every month to refill and they always have to order... "We'll have it in 1-3 days." This month I called a week early. They still don't have it, but they will get it in tomorrow or the next day. I'm picking up 5 days worth tonight because I'm running out soon. I hate to go through another change of meds, but I think that's what I'll have to do. 😕

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member - very unexpected experience from a friend who takes lacosamide (controlled substance) - his dr sent 90day rx to mailorder, and he got all 90days worth at once, instead of… read more

November 18, 2023

Best Diet For Epilepsy?

A MyEpilepsyTeam Member asked a question 💭
Indianapolis, IN

Hi Everyone! I have epilepsy and ADD, and my meds have got me in a brain fog. What foods, or diet do you follow? Any improvement in memory/focus with diet changes?

A MyEpilepsyTeam Member

keto

October 18, 2023

Anyone On Here That Has Controlled Seizures With Meds?

A MyEpilepsyTeam Member asked a question 💭
Port Orchard, WA

I don’t have seizures unless I don’t take my medicine, don’t get me wrong, I am VERY thankful, but the side effects from the meds and the season changing is kickin my ass! Any tips?

A MyEpilepsyTeam Member

Thank you! I’ll have to add more electrolytes.

November 5, 2023

How Many People Have A Vns And Do You Feel It Works For You At All?

A MyEpilepsyTeam Member asked a question 💭
Rochester, NY
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
That’s why I got rid of my VNS. The vibration made me cough and changed my voice whenever it turned on. It didn't help me with seizures either.

October 19, 2023
Sponsored Content
Learn more about VNS Therapy Read more >
Sponsored Content
Learn more about VNS Therapy Read more >

This Is All Very New To Me. Anyone Else Experience Chills Nausea And A Feverish Feeling With No Actual Fever Associated With Seizure?

A MyEpilepsyTeam Member asked a question 💭
Buffalo, NY
A MyEpilepsyTeam Member

Yesterday, I was at a A. A. meeting and had a terrible headache. Had to go home, take meds & nap.

October 18, 2023
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