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. :-\ :'(
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.
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!
Quote from: Pbrain on June 14, 2015, 06:06:27 AM
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.
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.
Quote from: cccourt1942 on June 14, 2015, 12:45:08 PM
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.
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