Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events
For the last two going on three years, I've been dealing with some extreme health issues. When my first "event" happened, it came and went for three straight days. I couldn't get the ER doc to take it seriously--and even though I was having issues staying conscious, was nauseous, and having obvious memory issues, she decided I should go see an OBGyn.
I ignored her ridiculous advice and saw my general practitioner, who told me that I'd had a seizure and probably wouldn't have any more. Unfortunately, I was foggy, dizzy, and exhausted, and found it hard to concentrate on anything. It took about six weeks to start to feel normal again, when, you guessed it, I had another seizure. When I called to try to get advice from my doctor--he ignored me for 3 months. On the same day, I called my chiropractor (who is training to get neurology under his belt). He made me come in the next day and immediately sent me to another more qualified neurologist chiropractor.
They started treating me. I was starting to get better, but on occasion still having debilitating seizures that would knock me out for days. That's when they sent me to a neurologist. I was given a sleep EEG and told that without a doubt that I had temporal lobe epilepsy. Almost a year after the first seizure,I started on the meds--the first five threw me for odd loops. One gave me the giggles and I couldn't sleep. Another made me so depressed that I struggled with getting out of bed, and I started having odd shaking spells. Another gave me a rash all over my body. Finally I got on Carbatrol and started to feel more normal. I was still having the shaking spells but they only happened right before bedtime and I wasn't too concerned about them. I mentioned them to the neurologist, but he pretty well ignored them. Unfortunately, while the carbatrol seemed to limit how much time it took to "get back to normal" with the spells, it didn't eliminate the seizures entirely.
I went in for a 24 hour eeg, then. I didn't have any seizures (mind you, at that point I was going about a month between them), but now they found that when I slept, that both of my temporal lobes were affected. The neurologist said that he didn't know what to do and sent me to the Mayo clinic to map my brain during seizures so I could get brain surgery.
They set me up for another long EEG at a hospital, but before that, I'd gone in for baseline readings at the clinic. That's where I had a shaking spell, and on top of it, was unresponsive after--so they assumed they'd caught both spells. I tried to explain several times that it didn't "feel right" and that I was sure that they hadn't seen what they were looking for. On top of it, I wasn't feeling bad. For once, all of the things that I normally avoid (video games, loud noises, etc.) didn't throw me into a spell. I didn't sleep more than 15 minute spurts in a less than 3 hour period. And oh, how I tried to get myself sick.
They came to me the next morning and informed me that I was having nonepileptic behavioral events, and they were positive I didn't have any brain issues. They offered to let me stay longer, but by their demeanor, I could tell they were assured of their diagnosis, despite the fact that they hadn't actually seen what they were meant to.
They told me that they were positive I needed to have cognitive behavioral therapy and to see a psychiatrist, and that I probably had PTSD and 30-50% of women with this issue had been abused as a child. Another 50% of people have depression with it. They recommended that I get off my 300 mg, twice a day of carbatrol cold turkey.
I don't want to have seizures of any kind and would be grateful to know that I have something easily "treatable," but I feel they didn't do their job. I do not have depression now, despite my poor health. Also, I feel that their recommendation of stopping the Carbatrol the way they said too is risky.
I have an appointment in a few weeks to talk to my neurologist about their results.
Can anyone give me advice about how to deal with all of this?