Am I having seizures in my sleep?

[Cailleach]

My DH is nagging at me to go to the GP as he says he has noticed I keep "twitching strongly" (his words) in my sleep. By this he means odd shaking and jerking movements, not the usual sleep twitches. Although he has always noticed that I do this, for some reason recently it seems to be getting worse. I also sleepwalk fairly frequently and have done since I was very small.

Bit of family history for you:

Father: grand mal epileptic, as child and adult
Sister: petit mal epileptic, as child and adult, narcolepsy, severe migraines, been under sleep clinic in past where nocturnal seizures were diagnosed, possibly ASD but not diagnosed, sleepwalks
Mother: chronic lifelong insomniac, probably ASD but not diagnosed

Then there's me: 37, diagnosed ASD, severe migraines but mainly confined to really strong visual disturbances rather than headaches, chronic insomnia (surprise!)

For many years - since I was a child in fact - I have woken up twice a week or thereabouts with a pounding head, sore hands and forearms (as though I had been doing strenuous exercise the night before), a clenched jaw and a fuzzy, drunken feeling that generally lasts all day. My pillows are regularly soaked in drool, so much so that I generally wash "my" pillows once a week. I also have a thick ridge of scar tissue along the inside of both sides of my tongue and both cheeks - my dentist has noticed this and was puzzled by it, as I have no alignment problems with my jaw.

My sleeping pattern is typically thus: fall asleep easily, then awaken after one hour, ALWAYS. Go back to sleep, wake two or three times a night, then finally wake up one hour before I am supposed to, try to get back to sleep, usually fail. Frequently wake up with a racing heart and covered in sweat with tight calf muscles.

Occasionally I wake myself and DH up with odd grunting noises - this is not snoring by the way, it's almost a coughing sort of sound.

During my ASD assessment last year I was asked if I ever had myoclonic jerks - and yes I do, in both my arms and legs (this is a frequent sign of neurological issues for those of you who don't know - I didn't.)

It has only just dawned on me that I may be having nocturnal fits as well. Yes I know - talk about slow on the uptake!

My point - sorry for the essay - is that I hate going to the GP for many many reasons, but mainly because I do not want to waste anyone's time.

Does anyone else out there have nocturnal seizures, and if so does this sound familiar?

Or are there any GPs out there that could advise me?

Thanks!

C

Not a doctor, but bumping for you as this sounds serious. Hope someone comes along with good advice soon!

I'm not a GP, but I am a doctor. Get your arse down the GP surgery woman. Take your DH with you. Could he video you at night?

If I was your GP, with that history, I'd be getting you a neurology referral.

Good luck

Thanks Antidote / Coughle; unfortunately I think videoing me at night would be impossible, but it was a good suggestion.

Anyone else got any experience of nocturnal seizures?

I'm not an expert but my husband started having seizures at night out of the blue, during a seizure he would be drooling at the mouth. the day after he would feel very tired and not well and have to spend the day in bed. You can be having a seizure even if your whole body is not affected.

He was also having absence seizures during the day the only symptoms were he would feel like he was in a daydream for a few seconds and then feel sick, originally considered by the gp as aniexty attacks once he started having night seizures it was then realised what they actually were. It is all now under control on medication. So maybe it's possible the visual disturbances you're having are actually a type of seizure not a migraine.

Definitely go to the gp and asked to be referred!

Thank you Indigo, unfortunately all that sounds rather familiar to me.

They can give you an EEG where you have to go deprive yourself of sleep the night before, so you will sleep a bit during the test. It may not be conclusive though.