Epilepsy or Non Epileptic --Have Rare Metabolic Disorder

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AbbyDoodle
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Date Joined Nov 2007
Total Posts : 2
   Posted 7/31/2008 8:35 AM (GMT -7)   
If your read my medical file, my list of complaints, symptoms, disorders, such that are leeches to my main disorder a urea cycle disorder is overwhelming. It took doctors thirty years, becauses was not diagnosed as baby.  Any way. All through this, we know that my weird falls, screaming, jerks and such were probably seizures.
 
As the disorder progressed untreated, my doctor said collateral damage accumulated. I have had several seizures that accumulated in blackouts and ER runs.  One where I went into coma.  I do scream and shake at night.  I have sleep apnea.  I could post all my symptoms it would frighten you and you'd think I am a hypochondriac.  But they hae all been confirmed by the medical group. 
 
about 8 years ago went to neurologist because blacked at lost whole day with amnesia, but did do things that day. After that I did start having seizures during day more so. One night flashing lights turned me into a zombie.  I use a cpap machine.  Every morning I wake up with migraines and shakes. As I get up I see flashing lights or gold circles, in a dark room I see visions like letters falling down the screen of a computer. I shake and jerk, if real bad, I must go back to bed and usually fall into deep sleep.  I am on medication for seizures and migraines.
 
In June once again I apparently had a seizure upon arising from an afternoon nap. Husband found me blacked out twitching and jerking on floor. Of to hospital again.  Yep they say a seizure.
 
After this, the twitching, jerking, shaking started subtly every day. Then progressively got worse.  I had severe headaches/migraines with them. Unbelievabley 3 times my lab dog pushed me to my bed where I fell in deep sleeps.
But this continued.  I kept checking blood sugars because was told to try to get to around a hundred.  Had been 136 and bounced.
 
Last Saturday night the situation reached a high, I was laying in bed jerking and twitching all over, could hardly speak. My poor husband was scared. Did not want to go back to hospita because they did not want to treat me because of rare disorder (I had already spoken to doctor --this is not normal for disorder.  He told me while in hospital I was begging and crying for candy like a child. Said was going to store to get me what I always was begging for but we tried to avoid because of weight.  Reeses Peanut Butter cup.
 
I took blood sugar before it was 154.  One hour later 155.  Next morning 121.  The miracle was that all the migraines, auras, and seizures that had plagued me for a month were gone.  Stupid as it sounds, I have been eating the piece of candy and taking meds for the past week and no seizures and headaches not as bad in am.  Last night no candy. I did drink cherry juice and it raised the blood sugar over night to 171.  Seizures and such were all back.
 
As stupid as it sounds, we went to store and bought the candy. I ate one.  Just like last week within an hour the seizures, tremors and twitches, headaches, and auras are subsiding.  Right now blood sugar has dropped to 146.
I have written my metabolic specialist who says this is nuts, but they really do not know why the people with my liver disorder have seizures and migraines that are not specific.
 
My neurologist was out of town and my appointment is not until late next month.  I am going to drop a letter by his office.  Now I really don't think the candy is magic.  But I do think something is going on with pancrease, insulin, my ammonia, ATP (energy and Brain).  I know my brain does not get enough quick energy if the body steals it.  That is part of disorder.  Maybe that is a partial reason for seizures.
 
Has anyone on the board experienced or know of anyone else that has had this kooky problem.  I have had the clonic tonic and all what ever.  They have seen them on EEGs.  It is the root cause that is elusive and I have stumbled onto eating this on type of candy bar each night.  Just call me crazy.
Abby Doddle
 
Chronic Illnesss -- "In a nutshell, it's a problem or condition that may limits what a person can do and that doesn't always go away," The original quote was by a social worker teaching children about chronic illness. The edits are mine. I am trying to kick butt on Urea Cycle Disorders.  Learn more about them. Your bundle of issues could be tied to what you eat and the mitochondria of your body. Never give up, listen to your body.

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