My Epilepsy Story

[KathyJJ]

My epilepsy began when I was 8 years old but my parents didn't get this diagnosis until I was 14. Until then, they were told it was emotional and doctors sent me to many different types of doctors before the real problem was discovered at 14. At that age, they were told I had petit mall seizures and I was put on medication after medication and each of them were like “drinking water” as far as helping my seizures. Later on, I went to a neurologist. He told me I had Psychomotor seizures. My seizures hadn’t changed so apparently I was given the wrong diagnosis in the past. He did test after test which included MRI, Cat Scan and more, I just can’t remember them all. He found and told me the cause of my seizures. I will never forget the day I was waiting to see my neurologist. I was in one of his examining rooms and he walks in and says “you are supposed to be dead”. That makes you feel so strange. He went on to explain that the test results showed that at sometime in my life, I had had a brain abscess. He told me I had had an ear infection and it had abscessed and burst. Instead of the infection draining out of the ear, it drained into the brain and caused what is called a brain abscess. He also said “no one has ever lived through this”. Because of this, other doctors, etc. wanted to run tests on me to see how I survived it but he told them “No”. My parents had told me when I was two years old I had an ear infection and almost died. I told my doctor this and he was pretty certain this is when it happened. I feel I am very fortunate to come out of that with only epilepsy and it isn’t very bad at all. He tried me on many medications but all of those were just like drinking water also as for how they controlled my seizures. As time went on, I became highly sensitive to medications and I had to be taken off of seizure medication. But, this proved it wasn’t helping me because I couldn’t tell any difference in my seizure activity. My seizures stayed the same with or without medication. Now, as bad as I hate to admit my age, I’m 56 years old and age has improved my seizures! This started AFTER I went through menopause. Through the years, I had noticed my seizures seemed to be worse around that time of the month but who would have thought menopause would improve my seizures this much. If I had known this, I would have had my plumbing jerked out years ago after I had my children! As I stated in an earlier post, most of my seizures are very light now. In fact, I can have one now and even my husband doesn’t realize it! That’s very light when he doesn’t notice it especially with as much practice as he has had over the years. That’s my seizure history. I hope I haven’t been too “long winded”. I haven’t been called “motormouth” all these years for nothing.

[alivenwell]

My epilepsy began when I was 8 years old but my parents didn't get this diagnosis until I was 14. Until then, they were told it was emotional and doctors sent me to many different types of doctors before the real problem was discovered at 14. At that age, they were told I had petit mall seizures and I was put on medication after medication and each of them were like “drinking water” as far as helping my seizures. Later on, I went to a neurologist. He told me I had Psychomotor seizures. My seizures hadn’t changed so apparently I was given the wrong diagnosis in the past. He did test after test which included MRI, Cat Scan and more, I just can’t remember them all. He found and told me the cause of my seizures. I will never forget the day I was waiting to see my neurologist. I was in one of his examining rooms and he walks in and says “you are supposed to be dead”. That makes you feel so strange. He went on to explain that the test results showed that at sometime in my life, I had had a brain abscess. He told me I had had an ear infection and it had abscessed and burst. Instead of the infection draining out of the ear, it drained into the brain and caused what is called a brain abscess. He also said “no one has ever lived through this”. Because of this, other doctors, etc. wanted to run tests on me to see how I survived it but he told them “No”. My parents had told me when I was two years old I had an ear infection and almost died. I told my doctor this and he was pretty certain this is when it happened. I feel I am very fortunate to come out of that with only epilepsy and it isn’t very bad at all. He tried me on many medications but all of those were just like drinking water also as for how they controlled my seizures. As time went on, I became highly sensitive to medications and I had to be taken off of seizure medication. But, this proved it wasn’t helping me because I couldn’t tell any difference in my seizure activity. My seizures stayed the same with or without medication. Now, as bad as I hate to admit my age, I’m 56 years old and age has improved my seizures! This started AFTER I went through menopause. Through the years, I had noticed my seizures seemed to be worse around that time of the month but who would have thought menopause would improve my seizures this much. If I had known this, I would have had my plumbing jerked out years ago after I had my children! As I stated in an earlier post, most of my seizures are very light now. In fact, I can have one now and even my husband doesn’t realize it! That’s very light when he doesn’t notice it especially with as much practice as he has had over the years. That’s my seizure history. I hope I haven’t been too “long winded”. I haven’t been called “motormouth” all these years for nothing.

Wow! That's an incredible story and definitely inspiring to us.
This definitely sounds like you are still living for a purpose!

The average person hasn't experienced the same stuff you experienced throughout your life.

Our bodies are simply machines. Like a computer, our systems occasionally 'crash'.

Normal people haven't experienced that crash. The imaginative ones or intelligent ones comprehend our disorder. The other ones are the challenge. That's why we have this forum!

By the way, my story is really similar to yours as well. I shouldn't be alive either! Either we are really strong willed, relatively healthy coming out of trauma or we have a very truthful purpose in life. I suspect we are here to remind other people that they are not perfect, and vulnerable to any illness. Our seizures remind them of that imperfection.

[RobinN]

Hi Kathy JJ, Welcome to CWE

Now that is a new cause of seizures that I had not heard of before. So abcess, would that be like a bacterial infection? I am interested in viral and perhaps bacterial causes.
My daughters seizures are many times around her cycle. I wouldn't consider having her plumbing "jerked" as she is only 16. I am just trying to figure out what is making the hormonal imbalance. I have found nutritional causes. Good to know yours are becoming less of a nuisance.

[stringbean]

Welcome Kathy
I also have not heard of this cause of seizures.

[KathyJJ]

Robin, brain abscess can be bacterial or fungi. Mine was caused from an ordinary ear infection that ruptured. I found this information that describes it better than I can:
"Brain abscesses commonly occur when bacteria or fungi infect part of the brain. Inflammation develops in response. Infected brain cells, white blood cells, and live and dead microorganisms collect in a limited area of the brain. This area becomes enclosed by a membrane that forms around it and creates a mass.
While this immune response can protect the brain by isolating the infection, it can also do more harm than good. The brain swells and the mass may put pressure on delicate brain tissue. Infected material can block the blood vessels of the brain.
The bacteria or fungi that cause a brain abscess common reach the brain through the blood. The source of the infectious organism is often not found. When identified, the most common source is a lung infection. Bacteria or fungi may also travel from a nearby infected area (for example, an ear infection) or be introduced into the body during an injury (such as a gun or knife wound) or surgery."

The complications listed were:
* Meningitis, severe and life threatening
* Epilepsy
* Permanent neurologic losses (vision, speech, movement)
* Recurrence of infection
I am very fortunate that all it left me with was epilepsy. And that is nothing compared to what it could have been.

[angel]

http://www.emedicine.com/EMERG/topic67.htm

http://books.google.com/books?id=PRL...YT-0s#PPA44,M1

brain abscess epilepsy - Google Search

brain abscess epilepsy - Google Search

actually, if you look up brain abscess and epilepsy on google many links come up...

[RobinN]

Thank you Kathy and Angel.
You are very fortunate Kathy. I had so many ear infections as a child, I should count my blessings as well. I remember one vividly that ruptured....OUCH

[brain]

KathyJJ

In the Women with Epilepsy Book, it
has been documented that women after
undergoing menopause that seizures have
decreased (which is good news) in some
women. So that's good news for you!

The CWE Epilepsy Resource has the
book info with link there, by Dr. Martha
Morrell - who is a member of CWE. It's
a well written book. I have it and it's
a must have, for it speaks for all women
and girls and teens too.