Hi, Everyone. I’m 58 going on 39, have had epilepsy since age 11 but am new to CWE. My seizures, which started as absence – looking back, I think they were atypical absence seizures because I always knew when they were happening – weren’t diagnosed until I was 22. However, by that time I experienced them as hours-long periods of mental fuzziness. These episodes didn’t fit any seizure description I could find and my doctor’s only explanation was “you’re just having a lot of them in a row.”
I was a compliant patient following diagnosis, but that changed. After trying two drugs - one at a time - I concluded that the treatment was worse than the episodes. Then, when I was turned down for insurance (self-employed at the time), I decided that my only reasonable option was to hide this thing. That created its own brand of stress but the real downside was that in hiding my problem, I also shut down my natural penchant for research and finding my own answers.
Fast forward 30+ years to March 2012 when I had a non-convulsive LOC seizure (probably atonic) that landed me in the ER and thrust me back into medical treatment. Afterward, I realized that it was the second time I’d had this type of seizure. The first occurred when I was 15 but I was alone at the time and our family doctor, assuming I had fainted, didn’t refer me for a neurological evaluation.
A little research convinced me that both LOC events were due to the hormonal fluctuations of puberty (at age 15), then menopause (at age 56).
I took levetiracetam (Keppra) for a little over 2 months but was allergic to it so switched to lamotrigine. I stayed on the starting dose (25 mg/day, ½ AM & ½ PM) and it worked well for a year, but then my seizures became more frequent than before I started medication. My doctor’s only answer was to increase the dosage. Because of side effects and because the drug made my seizures worse than they were without it, I am not willing to do that. So, once again, I am off drugs without the blessing of my doctor. This time, however, I’m not completely breaking up with mainstream medicine and I am continuing to research and work on non-drug management techniques.
Except for the two LOC events, these fuzzy episodes are the only seizure type I’ve had for 40+ years and I’d really like to know if anyone else has them. Key features: 1. Always occur in the morning, starting within an hour of getting up and lasting a few to several hours, 2. Start mildly with little “blips” but quickly ramp up to the status level, 3. My awareness is altered, not lost. My processing speed is cut dramatically during an episode, but I always know when I’m having one. 4. Average about 10 days apart.
I recently stumbled across a description of non-convulsive status epilepticus (NCSE) that matches exactly what I experience. The Doose Syndrome Alliance's website lists it as one of the seizure types that occurs in MAE (Doose Syndrome), a childhood epilepsy syndrome (sorry but CWE says I haven't been around long enough to post links). I did not have the syndrome but this description, particularly the part about “high functioning NCSE,” is the only one I’ve found that fits (pun unintended, really).
Sorry this is so long and thanks in advance for your insight and advice.
I was a compliant patient following diagnosis, but that changed. After trying two drugs - one at a time - I concluded that the treatment was worse than the episodes. Then, when I was turned down for insurance (self-employed at the time), I decided that my only reasonable option was to hide this thing. That created its own brand of stress but the real downside was that in hiding my problem, I also shut down my natural penchant for research and finding my own answers.
Fast forward 30+ years to March 2012 when I had a non-convulsive LOC seizure (probably atonic) that landed me in the ER and thrust me back into medical treatment. Afterward, I realized that it was the second time I’d had this type of seizure. The first occurred when I was 15 but I was alone at the time and our family doctor, assuming I had fainted, didn’t refer me for a neurological evaluation.
A little research convinced me that both LOC events were due to the hormonal fluctuations of puberty (at age 15), then menopause (at age 56).
I took levetiracetam (Keppra) for a little over 2 months but was allergic to it so switched to lamotrigine. I stayed on the starting dose (25 mg/day, ½ AM & ½ PM) and it worked well for a year, but then my seizures became more frequent than before I started medication. My doctor’s only answer was to increase the dosage. Because of side effects and because the drug made my seizures worse than they were without it, I am not willing to do that. So, once again, I am off drugs without the blessing of my doctor. This time, however, I’m not completely breaking up with mainstream medicine and I am continuing to research and work on non-drug management techniques.
Except for the two LOC events, these fuzzy episodes are the only seizure type I’ve had for 40+ years and I’d really like to know if anyone else has them. Key features: 1. Always occur in the morning, starting within an hour of getting up and lasting a few to several hours, 2. Start mildly with little “blips” but quickly ramp up to the status level, 3. My awareness is altered, not lost. My processing speed is cut dramatically during an episode, but I always know when I’m having one. 4. Average about 10 days apart.
I recently stumbled across a description of non-convulsive status epilepticus (NCSE) that matches exactly what I experience. The Doose Syndrome Alliance's website lists it as one of the seizure types that occurs in MAE (Doose Syndrome), a childhood epilepsy syndrome (sorry but CWE says I haven't been around long enough to post links). I did not have the syndrome but this description, particularly the part about “high functioning NCSE,” is the only one I’ve found that fits (pun unintended, really).
Sorry this is so long and thanks in advance for your insight and advice.