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Aseneth 11-15-2012 11:32 AM

Temporal Lobe Nocturnal Seizures?
Hello! This is my first post. I have had at least a 2 year search for answers to a condition which looks, according to two EEGs, to be related to disturbances in the temporal lobe (left, or perhaps both). I will be having a 24 hour monitor EEG done sometime this week. My symptoms are not entirely typical, hence the minimizing of doctors, and the disbelief of even the neurologist until he did a second EEG, and was impressed with the spike/sharp wave activity.

My episodes are always at night to early morning, and the pre-ictal symptoms wake me up: GI symptoms are most extreme. I wake with a great urge to toilet, am loose with diarrhea (sometimes uncontrollable) and nausea/vomiting. Besides that, I have racing and loud heartbeat, tight chest and burning sensations in and outside of my body. Fear, and weird feelings, including strange unrealistic thoughts (religious in nature). Frequently I pass out (not always), even when I know I am going to and lie down first. Though I am post-menopausal, there seemed to be a cyclical pattern to this, skipping a few months in the summer (I have less stress then?)

My twenty something daughter has been diagnosed with occipetal migraine (she has had 4 episodes of aura, then blindness for a few minutes), but I am wondering if it might also be seizures. We will definitely look into this once I have an absolutely positive diagnosis. We also have three generations of repeate infant febrile seizures (myself, my other daughter, and her daughter), outgrown by 3.

Does anybody else on this list have temporal lobe action ONLY at night? I have done some searches, and this seems extremely rare. One of my concerns is driving: there is an exemption in our state for those who seize only at night (the doctor can sign a waiver) but I haven't been able to find much info suggesting that temporal lobe nocturnal-only epilepsy is recognized. I am very reluctant to go on meds, since I need my wits about me for my job--I teach at a college.

Thanks for any comments anybody might have.

anna2012 12-01-2012 12:54 AM

Re: Temporal Lobe Nocturnal Seizures?
It could be temporal lobe epilepsy. You might be having small seizures more often than you realize and then having the big ones at night. In temporal lobe epilepsy, the seizures don't always involve a total loss of consciousness or convulsions. Instead, to someone else, it looks like you just spaced out. Because you are not unconscious, though, someone could be waving their hands in front of your face and it would get you to snap out of it.

If it is temporal lobe epilepsy, you should definitely get on anti-seizure medication. The reason is that the seizures aren't just damaging when they happen. They change your mood and cognitive abilities for 24+ hours after. Over time, if uncontrolled, the seizures can cause you to have psychosis that resembles schizophrenia. The fact is, without anti-seizure meds, you will most definitely not have your wits about you. And you probably won't know it, either :/

You should try talking to those close to you to see if anyone has noticed you behaving strangely, having an explosive temper, etc. I have relatives with this condition, and they will black out and not remember screaming at someone. You need to know this, but most people won't tell you when you are acting weird.

Some of the meds available, like Tegretol, are very effective and can give you your normal life back. Don't be afraid to try them. Just try them and if they don't work, drop 'em. Try another one. Then at least you can say you gave them a shot.

Aseneth 12-01-2012 06:00 AM

Re: Temporal Lobe Nocturnal Seizures?
Thanks, Anna. No tegretol for me, as I am a musician and have perfect pitch. We will try something else if the doctor insists I should have meds. I don't think I am having mini seizures during the day--I never space out (people would know, I teach and lecture daily) and I have a very even temperament. We are a close-knit family, and I DO have a daughter with bipolar, so I know about what happens when people "lose it." My youngest daughter and I are considered the "sunny" ones, and are hardly ever depressed or angry. but I will certainly not rule out meds: I am just nervous about them. Last night I was on a 24 hour monitor, so I suppose they will have more information for me next week.

:angel:Thanks so much for contacting me. Edith (my real name)

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