Reflecting on My Childhood Journey with Epilepsy

Posted by Rachel Skaug @rachelskaug, Tue, Jun 11 8:48pm

HI, I just joined the Mayo Clinic Connect. Looking forward to being able to help people through my past experience with seizures. I used to have seizures aka: epilepsy. I lived with it for the first ten years of my life and beat also as a child. I have a book out called “Epilepsy Through A Child’s Eyes” its about my whole 10-year childhood journey on living with epilepsy and being “cured” from it.

@rachelskaug
Hello Rachel & welcome to Connect.
What kind of seizures did you have?
How did you control/cure your seizures?
Can you tell us something about the 10 years when your Epilepsy was active?
Do or did you have memory problems and if so are they better now?
A man here is planning to sell his business due to memory issues, perhaps you can give him some encouragement.
Jake

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I had absence seizures that I remember and had five brain surgeries (they took a piece of my right temporal lobe out on the last surgery). My book has all the whole journey 🙂 The only memory aka: comprehension issues I have is remembering what I read if I cant picture it. I don't do well if someone gives me a to do list verbally. I learn best visually.

Liked by Leonard, Julia

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@rachelskaug

I had absence seizures that I remember and had five brain surgeries (they took a piece of my right temporal lobe out on the last surgery). My book has all the whole journey 🙂 The only memory aka: comprehension issues I have is remembering what I read if I cant picture it. I don't do well if someone gives me a to do list verbally. I learn best visually.

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@rachelskaug
So as far as memory is concerned do you notice any improvement in memory or comprehension since discontinuing your medication? I have been on meds for 52 years so I don’t know what it’s like to not be on them.
Jake

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@jakedduck1

@rachelskaug
So as far as memory is concerned do you notice any improvement in memory or comprehension since discontinuing your medication? I have been on meds for 52 years so I don’t know what it’s like to not be on them.
Jake

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Not significantly

Liked by Leonard

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@rachelskaug, Good Morning. I want to welcome you to Mayo Connect. I see that you have been a member on Connect for quite a few years and I am happy that you have joined the conversation and are willoing to share your experiences with others who are like you. I invite you to join the Epilepsy & Seizures Group to share more of your experiences.

I am not familiar with epilepsy, however, as a child going thru any medical treatment and especially the numerous surgeries as you have had, I would like to encourage you to share about your experience.
Am I correct to assume that you are a Mayo patient and have visited Mayo? What was it like for you, as a child to be in a hospital? What would you say to a child who is about to undergo a procedure to comfort them?

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@rosemarya

@rachelskaug, Good Morning. I want to welcome you to Mayo Connect. I see that you have been a member on Connect for quite a few years and I am happy that you have joined the conversation and are willoing to share your experiences with others who are like you. I invite you to join the Epilepsy & Seizures Group to share more of your experiences.

I am not familiar with epilepsy, however, as a child going thru any medical treatment and especially the numerous surgeries as you have had, I would like to encourage you to share about your experience.
Am I correct to assume that you are a Mayo patient and have visited Mayo? What was it like for you, as a child to be in a hospital? What would you say to a child who is about to undergo a procedure to comfort them?

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I have joined the epilepsy and seizures group for that reason. I haven't been a patient since 1998 at the Mayo Clinic but I did visit there for tests etc. I was very young when I went thru that experience so I don't remember alot of things. At the time I was at the Mayo Clinic in my journey it was another routine process to get tests done that were similar to previously done tests. I would say to a child going thru this process to do as the doctor says because then you will be that much more comfortable in the hospital setting. Ask questions so you are all on the same page. Bring something that is comforting to them such as a stuffed animal or a comfort toy. I liked doing word searches.

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@rachelskaug

I had absence seizures that I remember and had five brain surgeries (they took a piece of my right temporal lobe out on the last surgery). My book has all the whole journey 🙂 The only memory aka: comprehension issues I have is remembering what I read if I cant picture it. I don't do well if someone gives me a to do list verbally. I learn best visually.

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Hi, @rachelskaug – thanks for sharing some of your journey with absence seizures and 5 surgeries. I think that @crstyday40 @dawn_giacabazi and @patrassi might especially like to meet you.

You mentioned that you have some memory/comprehension issues, I believe you are saying due to your previous brain surgeries. How are you managing with those issues? Do you have workarounds you've learned? How has this gone for you in school?

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@lisalucier

Hi, @rachelskaug – thanks for sharing some of your journey with absence seizures and 5 surgeries. I think that @crstyday40 @dawn_giacabazi and @patrassi might especially like to meet you.

You mentioned that you have some memory/comprehension issues, I believe you are saying due to your previous brain surgeries. How are you managing with those issues? Do you have workarounds you've learned? How has this gone for you in school?

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@rachelskaug
Hi,
I’m very interested in Epilepsy and memory in general. What memories and deficits do you feel you now have either from medication, seizures or surgery? Are you able to differentiate any of those memories? At what age do you remember your childhood seizure issues? Did you have Seizures other than absence or ever have an episode of Non-Convulsive Absence Status?
Thank you,
Jake

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@lisalucier

Hi, @rachelskaug – thanks for sharing some of your journey with absence seizures and 5 surgeries. I think that @crstyday40 @dawn_giacabazi and @patrassi might especially like to meet you.

You mentioned that you have some memory/comprehension issues, I believe you are saying due to your previous brain surgeries. How are you managing with those issues? Do you have workarounds you've learned? How has this gone for you in school?

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In school it was considered a learning disability for comprehension. I do my best to learn things in picture format or make lists to remember things. Ive done this my whole life

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@jakedduck1

@rachelskaug
Hi,
I’m very interested in Epilepsy and memory in general. What memories and deficits do you feel you now have either from medication, seizures or surgery? Are you able to differentiate any of those memories? At what age do you remember your childhood seizure issues? Did you have Seizures other than absence or ever have an episode of Non-Convulsive Absence Status?
Thank you,
Jake

Jump to this post

I don't have any deficits really. I don't remember all the types of seizures I had, I was a young kid. I remember having seizures but not sure what age other than I had them the first ten years of my life. Ive been off meds since 1999. You want to more? Read my book called "Epilepsy Through A Child's Eyes" for my whole journey.

Liked by Leonard

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@rachelskaug

I don't have any deficits really. I don't remember all the types of seizures I had, I was a young kid. I remember having seizures but not sure what age other than I had them the first ten years of my life. Ive been off meds since 1999. You want to more? Read my book called "Epilepsy Through A Child's Eyes" for my whole journey.

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@rachelskaug
I plan to read your book but I’d like to know whose memories I’m reading. Are most of them your parents or other people?
Jake

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@rachelskaug

In school it was considered a learning disability for comprehension. I do my best to learn things in picture format or make lists to remember things. Ive done this my whole life

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How can I find information on picture format, Rachel?
This sounds interesting.
My main problem is memory.

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Hi, @rachelskaug@bruceg asked an interesting question related to what you shared about doing your best to learn things in picture format. Will you share more about that and how bruceg could find information on picture format?

How have you found the picture format helps you with your memory, rachelskaug?

Liked by Leonard

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@bruceg
I just wanted to say that years ago I went to Yosemite with friends and my friend was telling me about the rocks in the Merced river. I didn’t remember any of it. The next day at home I looked at the photo of us on the rocks and it came back to me. I remembered falling into to river and how freezing cold it was. I remembered going to the gift shop and getting clothes and paying with cash which I seldom do. Memories coming back from looking at a pic of me standing on a rock.
But pictures don’t always work. After I came home from the hospital from being in a coma for months my Mom put photo albums around but none of those pictures sparked any memories. I just thought it was interesting why one photo stimulated my memory but not others???
Jake

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