Frustrated! Possible noctural seizures?
 

I'm so stinkin' frustrated!!!! Hoping someone here might have some further insight into what might be going on.

Been having what I call 'wake-n-shakes' since April. I'll wake up in the middle of the night and (usually) my right hand will be having huge tremors. Sometimes I'll wake up from a nap and then the tremors will start. Occasionally, the tremors will start with my jaw and then the hand thing will start. I've even had one full-body episode of this (started with the jaw and then moved to all 4 limbs).

I'm perfectly aware of what's happening when it's happening. The cycle is wake up, hand (or whatever body part) goes wubba-wubba-wubba, then I fall back to sleep again right away. Sometimes it only hits once a night, other times this will hit 3-4+ times a night.

This is the sole reason I got a sleep study in the first place back in September. Took a whole 6 weeks to get the results back and I finally heard back from the neuro.

Everything came back fine on the polysomnogram! No mention of the multiple wake-n-shakes that happened during the study!!!!

Asked the neuro about the wake-n-shakes. He said they were probably sleep paroxysms and sometimes very difficult to detect. No further info, even when prodded. Thanks doc. *grumblemutter*

Any idea just what a sleep paroyxism is? Can't find anything on line regarding that particular term.

The MSLT came back with a dx of 'moderate excessive daytime somnulance (EDS - not the flexy one)'. Fell asleep during all 4 nap periods in under 7 minutes and reached stage 2 sleep in all but one of them. From what I understand, that's not normal. The neuro rx'd Provigil to help with the EDS.

The good news is no sign of apnea or narcolepsy.

One thing I've recently noticed is that when I'm even the least little sleep deprived, the wake-n-shakes happen. I've been keeping (loose) track of my sleep habits and that's the only "pattern" I've seen so far.

Would definitely explain why it happened during the sleep study - made sure I was good and sleep deprived for that.

So anyway, according to the neuro, I'm supposed to take the Provigil, see if that helps eliminate the wake-n-shakes, and if it doesn't he'll refer me to a sleep specialist. Picking up the Provigil this week.

I'm now especially eager to see whether the Provigil would make the wake-n-shakes better or worse, considering it's supposed to keep me up during the day. Less sleep = more episodes?

Anyway, I'd really appreciate any input you might have on this. I'm seeing a shiny new neuro in January. Until then, I'm hanging out here in limbo.

Thanks in advance!

Oh, forgot to add....

Have had multiple CT scans (w/o contrast), an MRI back in April w/contrast, and an EEG. All normal except for a very small non-specific gliosis (radiologist said likely nonsymptomatic) in the left lentiform nucleus that showed on the MRI.

One note about the EEG - during the hyperventilation part, my jaw began to have tremors, but the EEG didn't show anything.

Hi Curiouser,
I'm no Dr. but what you are describing sounds like a possible myoclonic sz. This type of sz. happens right after a person goes to bed or when the first wake up. This has happened to me a few times and brought me right out of a sound sleep. I will start shaking or have muscle spasms in parts of my body and then I blank out not remembering anything until after the sz. is over. I've had an MRI, CT scan, and e.e.g. done but it wasn't until I had the depth electrode e.e.g where the electrodes were placed right on my brain that they were able to find any lesions in my brain and that's because the damage was in so deep. My advice to you is to see an Epileptolgist at an Epilepsy Center instead of seeing a neuro. An Epileptologist specializes in epilepsy and a lot further ahead in understand what type of sz. a person is having a giving the person the least amount of AED's. I wish you the best olf luck and May God Bless You!

Sue

Sue, thanks so much! I've been so lost and my docs haven't been much help in figuring this out (or sharing info). By posting here, I was hoping to find a breadcrumb, rather than a diagnosis. At least I'd maybe find something that pointed in the right direction.

Never even occurred to me to find an Epilepsy center. I mean, I've had suspicions that's what it is, but was hoping for a dx from the neuro. I find the idea of actually being diagnosed with the "E-word" somewhat scary.

Oh yeah, new development on the wake-n-shake front: been having nights where I don't know if I'm having repeated episodes all night or if I'm dreaming about having repeated episodes all night. Been having odd imagery and a feeling of foreboding prior to the episodes and that makes me even more confused about what it really is.

Thanks again! Will do some investigating and post as things develop.

Epilepsy Centers
 

Hi Curiouser,
You can find an Epilepsy Center at many University Hospitals. You might want to check out these websites to get more info. on diiferent types of sz.
www.epilepsy.com
http://www.emedicine.com/neuro/index.shtml#seizures.
You may find info. of great help to you from these websites. Here's wishing you well and May God Bless You!

Sue

Thank you so much for your help! I've wandered over to epilepsy.com. Great website! I've already received some help and info there.

Thanks again! :)