Rebekah Mathews My Epilepsy Adventures

First post: Sep 17, 2019 Latest post: Aug 10, 2023
It all began when I was 13.  I had my first seizure out of nowhere.  No family history of seizures.  I got on medication quickly and life went largely back to normal.
Babies threw my life upside down.  I switched to a drug I was told was safer for being pregnant.  During my first pregnancy I began having increased seizure activity.  After 10 years of controlled and predictable seizures, I was experiencing the very opposite.  My dose was slowly increased until I was on the highest dose safe during a pregnancy.  Following the birth, the kinds of seizures I was having were changing and they were happening at a different rate.  So began the playing around with new drugs.  
My second pregnancy was much the same story, but my baby boy was born unexpectedly when I had a grand mal seizure at 9 months.
After the second baby we began some more special tests on my brain.  I had a week long EEG along with psychological testing.  The coolest and most in-depth test I have had so far was an MRI with super huge magnets.  After all these years we had the impression I had 10 small seizures a day - at my very worst.  After this huge MRI test they were able to detect that I had over 100 in an hour of sleep!  Which may mean I am having hundreds every night and who knows how many throughout the day!  
My very trusted neurologist, along with a team of other neurologists, has worked diligently to find an answer.  At this point I have been on 4 different medications, with multiple variations of concoctions of them.  Research says every time an epileptic has to add a medication it decreases their possibilities of actually controlling their seizures.  So, while I have not tried all the anti-seizure drugs, I have tried twice as many as most doctors would recommend and my options for controlling seizures through drugs really has been exhausted.  
And before another person asks, yes, we have considered marijuana.  Most people do not seem to realize that it works, but largely for kids and not so much for adults.  It may be helpful for me, but not sufficiently.  We could choose to go down that road, but if we did we would be abandoning a very long and old road.  We would have to find a new doctor, we would be paying out of pocket with money we do not have, it would take months to come off all my meds so that I can begin taking marijuana.  In the process a lot of grand mal seizures would occur, which is not only dangerous, but takes a big emotional strain on me and my family.  So we have made the choice to stay in the mainstream field of drugs and rich doctors.
There are probably many of you that do not understand there are at least DOZENS of different forms of seizures.  I have experienced so many of those.  Most of them are what doctors call partial seizures.   People always tell me how good I am with words.  Seizures are an area of my life I have never had very good words for.  It is difficult to describe them. You cannot see them happen to me and I am completely conscious, but I am disoriented and the world  around me kind of looks like a Picasso painting.  Sounds right next to me sound far away.  I feel a funny wave of something come over me from the back.  I feel sheer terror.  Some people actually get a euphoric feeling before a seizure.  Not me!  I go years between grand mal seizures - the kind that tv loves to dramatize.  
In addition to all this I experience daily, lousy side-effects from my 3 medications.  As I write the dizziness is overcoming me.  Soon I will be too dizzy to finish this.  Then I will be overcome with drowsiness and the tv will babysit my 3 year old because I will not be able to stay awake.  Or I will struggle through a quick lunch and a quick nap time routine so he is safe in bed when I fall asleep.  I cannot sleep for 30 minutes.  I need one and a half to two hours in order to completely sleep off the dizziness.  And this is my life.
That brings us here. It has been over 20 years and the option for giving me better quality of life is surgery.
On October 2nd I will be admitted for another a week long EEG in the hospital.  This time I am getting holes drilled into my head and wires put into the exact spot where the seizure focal point is located.  I will be taken off my meds and have seizures until the doctors have all the info they need.
Depending on the data collected I will have one of two procedures: one is called a resection: they take out the section of brain where all the seizures occur.  It is the only known possible cure for epilepsy.  However it is not a guaranteed cure.  And taking away a piece of my brain is kind of terrifying.  Surgery number two is much less invasive.  A divet is carved in my skull for a brain pace maker.  It monitors, records and stops my seizures.  Super cool news is it only improves over time.  Over time it could decrease my seizure activity by 70%!  Very exciting!  It could take years, though, and it may take as long as one year to see even the first signs of evidence of the device working. 
If either of these procedures works even a little, I could come off at least one medication and my quality of life would improve phenomenally!
So now you are all caught up.  Stay tuned for my stay in the hospital!  

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