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Mrs. Duck

Cryptogenic Epilepsy

 

In the summer of 2006 I went through an extremely traumatizing event. It left me with PTSD. During the week which caused the traumatization, I had a series of tonic clonic seizures which went undiagnosed. I was actually in the ER (according to witnesses) and actively convulsing, the typical go rigid then shake violently tonic clonic episode. The "friend" who was suppsed to be helping me out while my husband was on a deplyoment told the nurses and doctors I was having an anxiety attack, that I was insane, etc.

 That was July of 2006. By October of 2006 I'd had a few more episodes, all associated with alcohol. Sometimes even just a glass of wine would send me into a space cadet state. More than that and a few times I went tonic clonic again. Meanwhile I had an inexplicable facial/arm/vocal tic. I went to neurology where they diagnosed me as having Juvenile Myoclonic Epilepsy.

 

For a year I did medications, which always made me sick, but the seizures didn't really stop. I stopped them by not drinking, but I still had the facial tic.

 In January 2008 I was sent for a week of observation and EEG monitoring at Yale hospital. After a week I was given a few curious diagnoses. For an entire WEEK off medication (besides xanax for anxiety) my EEG was totally normal. On occasion one side of my brain would speed up, and the other would slow down, causing me to "zone out," but the doctors said this was normal, not epileptic. The "myoclonic" jerks were actually being caused by a mild form of tourrettes. Apparently a lot of anxiety meds and depression meds supress the ticks, which is why on all the medications for PTSD my ticks slowed down.

 They had no answer for the handful of tonic clonics I've had. All of the ones where there was a witness (i.e. not counting the time I came to on the bathroom floor, and had pulled down the curtain and rod, bitten my tongue, etc.) All the witnessed ones were associated with alcohol. Not large amounts even, just a glass or two of wine at times. The doctors decided that I had cryptogenic epilepsy, meaning there is no obvious cause. My brain waves are normal.

 I stopped taking the medication I was on (Keppra) because the doctors were going to taper me off of it anyways. No point in taking it when I don't have abnormal brain waves.

 My questions:

Does anyone else have issues so severely with alcohol? I'm aware that it's the withrdrawl from the alcohol that induces seizures, and my reaction is cohesive with that. I don't go down till I've begun to process the booze.

Its suspected that I have systemic lupus (it runs in the family, I have a hypersensitivity to the sun etc.).

 I'm only 22, I'd LOVE to have a glass of wine with dinner, or enjoy the tropical drinks on my vacation, but I'm terrified that I'll end up seizing again. It's been five months since my last actual seizure, which was the beginning of December and associated with alcohol. I'm not some alcoholic, I can live without, I just find it odd that such a SMALL amount of alcohol could cause this. Prior to the summer with the trauma I didn't have any issues that I was aware of, although looking back over the years, I do have periods of missing time after drinking, not a lot just a drink or two. (They were NOT blackouts, I literally just LOST time. I would come to on the floor, confused, still is fuzzy to this day.)

 

Advice?