Any of you have seizures or bite up your tongue at night?

[meena]

Hi Everyone -

Any of you have seizures or bite up your tongue at night? I've been doing it a lot lately, but I've also been waking up feeling really "off" with a huge headache.   

[sixty]

I sometimes bite my tongue or my cheek and I bite it hard.  Of course it wakes me up.  I don't know why or how to stop it.  Maybe a night guard would work.  I do not have seizures.

[Pbrain]

Well, that does sound like nocturnal grand mals but mine aren't specifically related to Sj. You should see a Neuro pronto!!!!! Best would be an in-hospital sleep study (easy peasy). Although maybe first line tearing would be an EEG or sleep-deprived EEG. Seriously, don't wait. A thing called "priming" can happen which makes it more likely to have then.

Fwiw-my very first was status epilepticus (no known cause but I was in the hospital for several days for testing afterwards) that started out in my sleep. Luckily my dh had noticed. For two more months in a row, also right before my period and also about the same time of night, I experienced a series if grand mal seizures in my sleep. My dh could rouse me after one-I was NEVER aware I'd had one- but then I'd fall back to sleep and, after a period is time (sleep cycle?), have another one. I always felt shot with a horrible headache and sluggishness the next day. I'd been in depakote after the status epilepticus so they switched my med and I stopped having them. Again, never a cause but they were clearly related to my hormonal cycle (catamenial epilepsy).

Good luck!

[meena]

Well, that does sound like nocturnal grand mals but mine aren't specifically related to Sj. You should see a Neuro pronto!!!!! Best would be an in-hospital sleep study (easy peasy). Although maybe first line tearing would be an EEG or sleep-deprived EEG. Seriously, don't wait. A thing called "priming" can happen which makes it more likely to have then.

Fwiw-my very first was status epilepticus (no known cause but I was in the hospital for several days for testing afterwards) that started out in my sleep. Luckily my dh had noticed. For two more months in a row, also right before my period and also about the same time of night, I experienced a series if grand mal seizures in my sleep. My dh could rouse me after one-I was NEVER aware I'd had one- but then I'd fall back to sleep and, after a period is time (sleep cycle?), have another one. I always felt shot with a horrible headache and sluggishness the next day. I'd been in depakote after the status epilepticus so they switched my med and I stopped having them. Again, never a cause but they were clearly related to my hormonal cycle (catamenial epilepsy).

Good luck!

Omg! Thank you for the info! I have an appointment set with the nero for next month for a sudden case of slow walking/leg weakness that landed me in the ER last month.

[cccourt1942]

Yes.  In fact, I was diagnosed with partial onset seizures less than 2 months ago.   I was referred to a neuro for sleep probs.  As we talked, I told him of my fear of Alzheimer's.  He asked why I thought that.  I related several episodes of "getting lost" even though I knew where I was.   I just didn't recognize anything around the immediate vicinity.  Very weird.  He skipped back to the sleeplessness...sent me straight a way for an EEG.  He told me he believed the wakefulness was due to the  seizure disorder.  The EEG showed a disturbance in my left temporal lobe.  I was stupefied.  I haven't felt right since I started taking the meds for it.  I'm afraid to stop taking the med though.

Good luck.

[meena]

Yes.  In fact, I was diagnosed with partial onset seizures less than 2 months ago.   I was referred to a neuro for sleep probs.  As we talked, I told him of my fear of Alzheimer's.  He asked why I thought that.  I related several episodes of "getting lost" even though I knew where I was.   I just didn't recognize anything around the immediate vicinity.  Very weird.  He skipped back to the sleeplessness...sent me straight a way for an EEG.  He told me he believed the wakefulness was due to the  seizure disorder.  The EEG showed a disturbance in my left temporal lobe.  I was stupefied.  I haven't felt right since I started taking the meds for it.  I'm afraid to stop taking the med though.

Good luck.

My mom has seizures, but when I told her of my symptoms (stated above), she feared that I had them too.  There have been times that I would repeat myself once or twice in a row and my mom (or one of my friends) would say, "You said that already, stop repeating yourself". But I wouldn't remember saying it.  My mom would look at me funny but my friends wouldn't think anything of it.

[cccourt1942]

Meena...
    I have never had anyone point this out---BUT.  Every once in awhile I am on the phone..and when talking and I "repeat" something, I realize I have either THOUGHT what I am saying, DREAMED what I am saying...and finally ...after I had those recognitions I will tell the other party I may have just said that...and with that prompt the person will always verify I have said that...somewhere earlier in the conversation.  Because I am old, I never thought about...a simple case of repeating myself, right?  With a story like yours, I am going to pay closer attention to said events.  If these are seizure events, I will say this:  since I have been on the meds, this has happened maybe once or twice.  Much less frequent that before that is.

Thx for sharing.

ccc