1. < Epilepsy & Seizures
Moderator

Living with epilepsy - Introduce yourself & meet others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 7, 2016

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let's learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. You're likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Leonard | @jakedduck1 | Jan 26, 2020
In reply to @1710dave "I need to get a new neurologist and I was wondering since they said I have..." + (show)
@1710dave

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

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1710dave
Something crazy is going on my posts are changing what they say I’m in the process of correcting it now.
Jake

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1710dave | @1710dave | Jan 26, 2020

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

REPLY
3 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 2, 2020
In reply to @1710dave "I need to get a new neurologist and I was wondering since they said I have..." + (show)
@1710dave

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

Jump to this post

Hi, @1710dave - wondering how things are going for you? Are you still considering going to see an epileptologist?

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1 reply
1710dave | @1710dave | Feb 2, 2020
In reply to @lisalucier "Hi, @1710dave - wondering how things are going for you? Are you still considering going to..." + (show)
@lisalucier

Hi, @1710dave - wondering how things are going for you? Are you still considering going to see an epileptologist?

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Hello Lisa,yes I have an appointment the end of march.I cannot believe all the doctors I have been to and not one will listen to me about all the issues I am having.All they say is we cannot find anything wrong.They quit seeing me when I bring up amalgam mercury poisoning,which every issue I have is listed under mercury poisoning.Have been working on this for six years.Thanks for asking
Take care
Dave

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rhartl | @rhartl | Feb 2, 2020
In reply to @jakedduck1 "@rhartl Hello, First, congratulations on getting your commercial license, that’s great. In the beginning, your story..." + (show)
@jakedduck1

@rhartl
Hello,
First, congratulations on getting your commercial license, that’s great. In the beginning, your story sounded just like mine. I was on Dilantin and Phenobarbital too until the Dilantin became unstable and my level was either low or toxic, so I switched switched to Carbatrol. My dad was also a truck driver, although later he did less driving and became dispatcher and shop foreman. I can’t believe that after 40 years they’re still making you go through all that trouble. I think it’s a little much but I know of a man in Scotland who was seizure-free for 50 years and then had one out of the blue, so one never knows. But realistically how often does that really happen?
Stay safe out there,
Jake

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Thank you Jake. The USDOT law book had said that if you had ever had epilepsy, you could not drive a Commercial Motor Vehicle (CMV) in interstate commerce. I think that specialist in the field decided on a time period formula that they estimated a driver with a history of epilepsy was know longer any less safe then a driver with no history. I still am on the pilot program and do not know when if ever I will be taken off. I am just happy to be doing what I am doing.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 7, 2020
In reply to @mmaryemc "I started a discussion about 8 months ago about my granddaughter who was hospitalized because she..." + (show)
@mmaryemc

I started a discussion about 8 months ago about my granddaughter who was hospitalized because she was having seizures. She was put into a medically-induced coma and given countless numbers of medications. Now to this day. She is still in a coma. They can't wake her up and they don't know why. Today we were told that we need to find a long-term rehab facility for her. They're done and they don't know what to do for her next. They want her out of the hospital and we have to find a place for her ASAP. She's 14 years old and on a respirator. Anyone? Suggestions? Recommendations? Comments? ANYTHING!?

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Hi, @mmaryemc - how are you doing? Wondering if you might provide an update on your granddaughter?

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 7, 2020
In reply to @patrassi "Hi! My name isPatricia and I have a little son that has intractable seizures. As you,..." + (show)
@patrassi

Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery... we are planning to go... but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon ... and I am really afraid of this new procedure.
He is not going to school, or playing anymore... everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

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Hi, @patrassi - how are you? How is your little son who was having seizures? Did he end up having another surgery?

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frosty27 | @frosty27 | Mar 8, 2020

Hi all,
I am 56 years old and have recently been diagnosed with Epilepsy after experiencing a tonic clonic seizure back in October. Testing confirmed TLE on my right side. I have been on Keppra and experienced a lot of side effects the first few weeks but things got better. I do think my mood swings are related to the pill and that is difficult to deal with at times. My question to the group is this: I experience a tingling sensation on the right side of my head at random times. It will last just a few seconds but it’s very noticeable. I had a 3 day EEG to see if they could capture that moment, but of course it didn’t happen. Does anyone else experience this sensation? I’m not sure if it’s from the Keppra or some form of a dampened seizure? I never experienced this sensation before all of this happened.

Thank you.

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2 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 8, 2020
In reply to @frosty27 "Hi all, I am 56 years old and have recently been diagnosed with Epilepsy after experiencing..." + (show)
@frosty27

Hi all,
I am 56 years old and have recently been diagnosed with Epilepsy after experiencing a tonic clonic seizure back in October. Testing confirmed TLE on my right side. I have been on Keppra and experienced a lot of side effects the first few weeks but things got better. I do think my mood swings are related to the pill and that is difficult to deal with at times. My question to the group is this: I experience a tingling sensation on the right side of my head at random times. It will last just a few seconds but it’s very noticeable. I had a 3 day EEG to see if they could capture that moment, but of course it didn’t happen. Does anyone else experience this sensation? I’m not sure if it’s from the Keppra or some form of a dampened seizure? I never experienced this sensation before all of this happened.

Thank you.

Jump to this post

Hello, @frosty27, and welcome to Mayo Clinic Connect. Thanks for sharing about your recent epilepsy diagnosis and the levetiracetam (Keppra) you are taking. I moved your post here to this discussion so that you can meet others who are living with epilepsy.

I'm guessing members here can tell you if your experience having side effects the first few weeks of taking levetiracetam (Keppra) also occurred in their cases, and hoping they also have some input for you related to the tingling sensation on the right side of your head at times. Please meet @jakedduck1 @crstyday40 @ryman @robertjr @dawn_giacabazi @bonnieh218.

Did your neurologist have a theory on the tingling sensation? If so, what did he or she think it might be?

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1 reply
frosty27 | @frosty27 | Mar 9, 2020
In reply to @lisalucier "Hello, @frosty27, and welcome to Mayo Clinic Connect. Thanks for sharing about your recent epilepsy diagnosis..." + (show)
@lisalucier

Hello, @frosty27, and welcome to Mayo Clinic Connect. Thanks for sharing about your recent epilepsy diagnosis and the levetiracetam (Keppra) you are taking. I moved your post here to this discussion so that you can meet others who are living with epilepsy.

I'm guessing members here can tell you if your experience having side effects the first few weeks of taking levetiracetam (Keppra) also occurred in their cases, and hoping they also have some input for you related to the tingling sensation on the right side of your head at times. Please meet @jakedduck1 @crstyday40 @ryman @robertjr @dawn_giacabazi @bonnieh218.

Did your neurologist have a theory on the tingling sensation? If so, what did he or she think it might be?

Jump to this post

My neurologist asked if I got any type of headache after the tingling sensation as she thought it could be a migraine aura. I seldom get a headache after the episode and I rarely had headaches prior to the seizure. Initially I got a headache within an hour or so of taking the Keppra but that has subsided.

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