3 minute read
Memory Loss
In late 2001, age 56, I was diagnosed with a dysautonomia. Prior to this, I had “every test known to man” and of course, all results came back “normal”. A doctor in Florida made the diagnosis; he has POTS* himself so really understands.
Trying the prescribed medications, I still had seizure-like episodes and they occurred frequently even though I was careful to stay out of the heat and drink lots of water. My husband was frantic, especially as his job took him away three weeks out of four. We had some friends in town, but no family.
Then, in February 2003, I crashed the car while driving alone. It is a miracle I survived as I “drove” the car off road into brush. The last I remembered was feeling an episode coming on and knowing I needed to pull to the side of the road. I do not recall stopping or getting out of the car which I did unassisted. When I “came to”, I was talking with people who witnessed the accident and who called the ambulance. I only had a few bruises!
The next week, I saw the Doctor and he said, I think you may have syncope since you do not always completely faint and are very confused when you are “back”. The Doctor had been to a conference and had a brochure from STARS, which he gave us. I had more neurological tests in the hospital after the accident and the neurologist said her speciality was epilepsy and we could CHOOSE a medication to try. She told my husband that the next event could kill me! Of the meds she mentioned, Lamictal was “chosen” and we started the lowest dose and within days or a week, I felt more clear-headed and frequency of seizure episodes decreased.
My husband requested a transfer to a cooler climate and we moved to Virginia in 2003. I have continued to improve, require less naptime during the day and have suffered only 2 seizures in the past 7 months. Over time, we have increased the dosage of Lamictal, spacing it evenly throughout the day. I still take only 150 mg/day.
Our remaining concern is the memory loss and I have ADHD tendencies, especially when I’m overly tired. The doctor explained to us that during a seizure, there is a time when neurons in the brain do not connect and the result is “pockets” of memory loss. Some of this is long-term loss and some is fairly current. I am adapting to this but it is still frustrating for Tom. He had hoped that my memory would improve. In some instances, it has, yet there are times when I wonder if I remember something just because he has described it to me in detail or if I am truly recalling it on my own. The doctor has told us that some memory is gone forever due to the seizure activity in the brain.
I have also been taking other medication Florinef and Clonazepam, which has been gradually reduced, and I have come completely off Phenobarb. My doctor doesn’t know about STARS nor why the Lamictal is making such a dramatic difference in my life. All he knows is that for the time being I will continue taking it!
I would really like to communicate with someone who has syncope with memory loss. On those times when I become discouraged, it would be wonderful to share this with someone who can relate to this phenomenon. I would like to say thank you to Trudie, for caring and for always replying to my questions and Emails!
