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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.

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A MyEpilepsyTeam Member asked a question 💭

I am 57 with MS. I am mobile but still have some issues such as falling and dizziness. 2 weeks ago I had 3 seizures in 2 days. Have never had 1. Went to neuro and after tests declared my ms has caused epilepsy. Do you spend time alone? I find myself being afraid to be alone.

A MyEpilepsyTeam Member

Keppra is the medication I am on also.

What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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How Come Every Time I Start A New Job Within The First 1 To 3 Days I Start Having Epilepsy Activity And It Interferes With Me Working
A MyEpilepsyTeam Member asked a question 💭

How come every time I start a new job within the first 1 to 3 days I start having multiple focal seizures and it affects my work but when I am home not working it will be fine my focal seizures will be gone

A MyEpilepsyTeam Member

The stress ï now have too much in my mind. Take it one day at a time

What’s Your Favorite, And Least Favorite Thing About An EEG?
A MyEpilepsyTeam Member asked a question 💭

Sleeping or watching tv

Least favorite:
1. Lack of sleep
2. Strobe lights
3. Blowing on a windmill

A MyEpilepsyTeam Member

My least favorite part of an EEG was having the electrodes implanted directly into my scalp. Then I was told to relax!

Anyone Having Positive Results Microdosing?
A MyEpilepsyTeam Member asked a question 💭

I have Tonic-Clonic seizures every 2 weeks. I'm 51 and have been having them for 10 years now.
I started microdosing 3/10s of a gram and I still had my seizure every 2 weeks, but I went 4 months without a Tonic-Clonic seizure.

A MyEpilepsyTeam Member

The past year ive been thinking of doing it. Im glad to hear it has sone kind of a positive affect and hope it gets even better for you 😊

Does Anyone Else Struggle With Memory?
A MyEpilepsyTeam Member asked a question 💭

It doesn't matter how much I try paying attention to the conversation. I couldn't tell you everything word for word even if it's just happened. It's like it goes in one ear and out the other. Like following instructions if I've been given 3/4 things to do if I've not written down I would be able to remember 3 & 4 but not 1 & 2

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I am sorry to hear that your family reacts that way. However, you have friends on here, and we can reassure you that you are normal. Epilepsy/Seizure Disorder doesn't make… read more

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more

Resources For Talking About Epilepsy And Medication To A Toddler
A MyEpilepsyTeam Member asked a question 💭

My 3 1/2 year old so was recently diagnosed with idiopathic generalised epilepsy and likely to start Keppra soon. Does anyone have any good resources about talking about epilepsy and taking medication for this age group. Many thanks

A MyEpilepsyTeam Member

I would start looking into short stories for kids and comics .

Story Books ……
Lee the Rabbit with Epilepsy
Dottie the Dalmatian has Epilepsy
Living with Seizures
Because You are My Best Friend
read more

Is There Anyone Out There Who Has Had Their VNS Removed Who Would Be Willing To Share Their Experience ?
A MyEpilepsyTeam Member asked a question 💭

I am specifically interested in whether you had
1.. the whole wire removed including the clamps around the vagus nerve
2. The whole wire removed except 2 cm closest to the nerve
3. Just took the generator out but left the entire wire

My understanding is that if you leave the whole wire in but take the generator out, you can no longer have an MRI

Did you have any symptoms related to the wire remnant?
Did you have any complications?
Did it seem like an easy surgery?
Any advice?


A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had my VNS removed
They removed the big piece that stuck out of my chest but they left the leads (wire) in my neck. Which I can only feel with my finger. I was still… read more

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Does Anyone Else Have JME And How Often Are Your Seizures? Feels Like I Have A 2/3 Month Timeframe And Then I Have One.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Thanks for the hug.