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Old 07-08-2011, 11:53 AM   #1
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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?

 
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Old 07-09-2011, 09:48 AM   #2
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

Actually, the vagus nerve treatment was one of the things mentioned by my neurologist. He had a long list of treatments, but said that with having both sides of my temporal lobe affected that there was a lower chance of it working. Additional medications aren't even a consideration at this point.

I am going to do the cognitive behavioral treatment for the shaking spells, but I'm worried that if he decides that the Mayo clinic was entirely right and he was entirely wrong, and he takes me off of the carbatrol (which works up to a point), that something really bad will happen.

I'm not sure I have many options at this point, but I am not stopping the seizure meds until I see the neurologist.

Other than that, I'm rather lost until that appointment.

 
Old 07-09-2011, 09:26 PM   #3
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

Try the Ketogenic Diet it is a change in diet that causes siezures to pretty much "Go Away" in extreme cases and the success rate is extremely high some people call it the cure for epilepsy i turned it down because it causes weight gain and i'm already fat lol. my treatment works well and i'm doing well wouldn't trade my magnet for the world. and i can deal with the raspy voice do to the occasional shocks!

 
Old 07-10-2011, 07:38 AM   #4
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

My neurologist did mention the "Atkin's Diet" as being an epilepsy reliever. I've got many food allergies and pretty much eat this way, anyway. I'll have to do more reading up on it to see if I can implement it.

 
Old 07-10-2011, 11:56 AM   #5
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

Zombie Girl:

Sorry for the typo. I thought you were taking a different med. Hopefully this specialist will have some answers for you.
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Last edited by Looking4aAnswer; 07-10-2011 at 03:52 PM.

 
Old 07-10-2011, 02:27 PM   #6
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Lightbulb Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

Just remember that I know your pain and it's a scary affliction but I've learned not to be afraid of the seizures anymore through self therapy and my religion has helped out a lot as well as unorthodox as it is. I am scarred in one aspect though I can't stand the dark i got to have light in the house being in a dark place reminds me of the darkness i was thrust into and you know what its like it's like you'll never come back. So it'll be akward when i get married lol even with people around i can't stand darkness i just curl up. Sometimes i can fake not being afraid of it but the fear gets too great sometimes and I just walk away to somewhere that's light. I pay the electric in my house so i can leave whatever lights on as i want whenever i want however long i want to sleep with the light on is a comfort and to have the lights go out could stress me into having a seizure probably.

 
Old 08-10-2011, 02:59 PM   #7
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Cool Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

I am truly for your frustrations and can completely relate. I was diagnosed w/temporal lobe "e" almost six years ago, had three VEEGs that showed nothing until the third one until they stopped my meds. I had four 'grand mals' and they STILL couldn't find my folcal point.

It's so very frustrating. My epi. doc just upped my meds, after trying 12 on me. Have you tried any other meds before Carbatrol? Maybe a different medication would be your magic ticket. My guy offered VNS, even thogh he's not a big proponent of it. He told me that, honestly.

So he just keeps throwing me more drugs at me. BUT! It works for some people.
It's your decision. Hang in there and do what you think is best...and do your homework!

Best wishes to you!
Sheila

 
Old 08-14-2011, 04:35 PM   #8
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

Zombie Girl,

I believe you should wait to see the neurologist before you drop the "carbatrol cold turkey". I've dramatically decreased medication in the past and it was a big mistake. You may create more problems in doing so, and the neurologist can provide you with a better direction. Best Wishes.

 
Old 02-05-2012, 11:34 AM   #9
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Re: Temporal Lobe Epilepsy vs Nonepileptic Behavioral Events

I've had a very similar experience. I was diagnosed with TLE three years ago but continue to have seizures after trying more than 10 medications. I've been to monitoring units several times but have had very bad luck with not having my usual seizures while in the hospital. My epileptologist sent me to Mayo in December. They kept me less than 24 hours and the doc decided I was having behavioral events and that there was no evidence of epilepsy and that I should be taken off meds. He hadn't seen my original EEG so my doc sent it to him and then he decided that I definitely did have epilepsy and should be on meds, that I was a complicated case and seemed to be having both epileptic and non-epileptic seizures. While at Mayo as well as at other monitoring units I have said that the seizures I had were not my typical seizures but I don't think they're listening very well. I've been sent to many mental health professionals, none of whom believe me to be having behavioral events. I put a lot of faith in Mayo but I sure don't now. They made their mind up way too fast, in my opinion, and didn't go that extra mile I think they should have to try to figure things out.

 
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