Odd events during sleep

[Kgartner]

I'm curious - does anyone know if epilepsy and/or AEDs increase restlessness or non-seizure "events" during sleep?

My 15-year old daughter was diagnosed with complex partial seizures in September and is on 1500 mg/daily of Keppra. The doctor thinks her seizures originate in the right frontal lobe. She has been seizure-free since 9/13.

However, I have noticed a big difference in her during sleep. For various reasons (insomnia, anxiety, illness) for the past 3-4 years I have frequently fallen asleep in her bed and spent part of the night there. She has always been a deep sleeper and hard to wake up - I would joke that she had a hard time falling asleep, but once she was asleep it was like she was in a coma! Except for repositioning herself, she has always been a very motionless sleeper. I don't remember her having many of those falling-asleep type jerks, rousing much or anything. She would occasionally talk in her sleep, but just do it from a prone position.

In the past month I have fallen asleep with her a few times and this is what I have observed:
- multiple leg twitches in the first 15-20 minutes after falling asleep
- leg and head twitches and jerks farther into the night (generally around 1 1/2 - 2 1/2 hours after sleep); last night she had many, many head jerks, mostly pretty subtle
- occasional noises - moaning, loud sighs
- strange events: sitting up and looking around (without rousing), mild lip smacking; and one really odd event in which she sat up with eyes open, smacked her lips and jerked her head to the right and back very sharply, and smacked her lips again before lying down and going back to sleep

I don't fall asleep with her most nights, and even when I do some nights I observe very little movement. The last two nights, however, she has been all over the place!

I ran this by her neuro after the particularly odd "head jerk" event, and he was not concerned - "not worried about any of these episodes in the slightest" he said. Mostly I don't think they sound like seizures. However, I do think it's strange that this seems to have started now, and I worry a bit about whether it is keeping her from getting deep sleep - she is tired all the time, but it is hard to tell if that's from this, from the Keppra, or from being a busy 15-year old.

Has anyone else seen anything like this? Any possible explanations?

 

[N Sperlo]

I have seizures originate in the left frontal lobe. I was on 2000 mg of Keppra and would do things like that in my sleep. Hands go to my head and I'll do situps or freeze mid-situp. Perfect V. It was great exercise, but when I started throwing things or slapping my wife, it was time to get it fixed. It started just as you mention and EEGs were normal. My doctor diagnosed me via video. I would bet this has nothing to do with any reaction FROM the drugs.

I'm on Vimpat now and I sleep like a baby.

EDIT: I forgot to mention; My neurologist first diagnosed me with RBD (Rem Behavior Disorder) and Volume helped keep me still. When he saw the movements were irregularly similar, he had decided it was likely a simple-partial. The Vimpat has also improved my waking hours. I'm on 150 mg 2x a day along with the 2000 mg of Keppra 2x a day.

 

[Kgartner]

Wow - that's really interesting. Her doctor was so insistent that these events couldn't possibly be seizure-related! There was one other movement she made that I forgot to mention - at one point last night she raised her right arm up twice, like she was raising her hand in class. Aside from the repeated head jerking movements (which remind me of the sharp right head turn that initiated one of her September seizures - the only one I saw from the beginning), most of the other movements have not been repeated. But then again, I'm not there all night, and I'm not there every night so it's hard for me to say for sure. How did you get video - did you do it yourself or did you do a sleep study?

Finally, was your EEG for these events always normal, or did they ever show up on an EEG as simple partials? And is the fact that they responded to the Vimpat show that they were most likely seizures?

I looked up RBD and it sounds a lot like what I'm seeing - except that most people who develop it are 60-year old males, not teenage girls!

I think I am going to try not to worry about it too much and just keep an eye on things. So far this doesn't seem to be doing her too much harm, and I am trying not to freak out about every little thing. I am already writing everything down. I will ask about this at her next appointment and make sure that the attending hears about it, not just her doctor (he's a nice guy, but since he is a fellow he's very new to this).

Thanks for your input. It was very helpful.

 

[alice123]

I experience something's you described and my doctor is confused! And i am exhausted every day especially if im getting up early which is rarely!





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[N Sperlo]

RBD in a younger case, see the movie Sleepwalk With Me.

I had a 3 day at home Video EEG. Video was only done in bed. The EEG was always normal during this EEG.

The doctor found this such an odd case that he decided to highlight it in his next lecture. That was the 2nd time I've been the case study.

My doctor was pretty sure it was RBD until he saw it for himself.

There have been times I've come to during one of these episodes and I would continue the motions until I realized what was going on. Once I was throwing a TV remote into the bathroom or another I was attempting to... hmm. get busy with my wife? Sometimes they are the same motion and sometimes they are not.

One thing was almost always similar. I stopped remembering my dreams. I remember them now.

 

[masterjen]

I don't think it is right for the doctor to have said he is not concerned "in the slightest". Some of what you describe is suspiciously seizure-like, and something that the doctor should be taking note of. What are the plans with the Keppra? Is your daughter continuing to increase the dose, or is she at the maximum prescribed dose? How long has she been on the maximum if she is there already? Just wondering if the doctor saying he wasn't concerned is just poor wording on his part, when what he meant was "she has not been on this dose for very long so let's give it a little while longer to see how well it will work". Remember that a relationship with a doctor is not written in stone, and you can always seek a second opinion (an epileptologist is a seizure specialist, and often they have more insight to offer than a general neurologist).

 

[Kgartner]

Masterjen - you are absolutely right. The conversation I had with her doctor about this took a left turn for several reasons (some of them not his fault), and I actually felt very dismissed by his response. To be fair, at the time that we spoke I had observed only one of those events so he doesn't have all the information I've put here - and based on what both N Sperlo and Alice123 have said, it seems that I am describing something pretty unusual. So his response, while irritating and dismissive, was not completely out of left field.

I do think it is possible that this is some kind of parasomnia or sleep issue. They could also be simple or complex partial seizures. None of the things I have observed are a clear example of typical seizure activity - although I agree that they are suspicious. Honestly, based on what I have read, they don't seem to fit clearly into any category. Right now I think the best thing I can do is continue to observe her when I have the opportunity, keep a log of what I see, and look for patterns. That will all be useful information when we have our next appointment (in about a month).

Her doctor's attending happens to be the doctor who founded the Pediatric Epilepsy Center at CHOP. He came to her last appointment and he was amazing! If these episodes continue I will probably want to insist on a sleep study or video EEG (depending on what they think is going on) - and if her doctor isn't open to that I don't think it will be an issue at that point to have his attending review my observations. I am not attached to any particular diagnosis or interpretation, but I do think it needs to be taken seriously. At the very least, I'd like to know if some of her daytime tiredness is due to this. Another odd thing that has happened at least a half dozen times is what I am calling "micronaps" - she'll suddenly fall asleep for 30 seconds or so on the way home from school or dance, or in the movies. I never saw her do that type of thing before!

In any case, what I am getting from the responses so far (and from the lack of a bunch of people saying "oh yes, I suddenly started doing odd things too but it was nothing to worry about") is that it is not typical to suddenly start twitching, jerking and doing odd things in your sleep simply because you have developed epilepsy!

 

[SoonToBeMommy]

Possibly some myoclonic jerking. Just a possibility.

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[Kgartner]

Masterjen - I forgot to answer your question about her medication. She is not at a maximum dose of Keppra, and there is quite a bit of room to increase if needed. It's been about 2 1/2 months now that she has been on the medication, and they started off right away at a therapeutic dose (which you can do with Keppra), so I don't think his response had anything to do with that.

There are a hundred different ways that our last conversation went "wrong" - I think his intention in communicating his lack of concern was to reassure me, but instead it felt like he was suggesting I shouldn't have brought this to his attention in the first place. I'm not ready to bypass him yet, but will be seeing how the conversation goes in January. I do think these events need to be taken seriously, particularly since they have continued.

 

[masterjen]

Kgartner - one thing it seems doctors don't do, or at least take enough of, is coursework on speaking to patients. There are a lot of better ways he could have said things to reassure you. But, that's in the past, right!?
Easier said than done but would you be comfortable at next appointment taking the upper hand, and saying "I think we got off on the wrong foot, and I'd like to start our relationship over for the sake of my daughter . . . ". the only reason I say this is because of how much you like the supervising doctor - you wouldn't want to lose that contact should you be thinking of getting a second opinion like I said in my first post. Here I am dispensing a suggestion to do something I wouldn't even be comfortable doing, but it's something I'd like to think I'd have the courage to do if the need arises

Another thought I have is increasing the night dose of the Keppra , and see if her night events diminish. That may tell a story as well. Is this something you think the doctor would be comfortable doing, or at least trying?

Keep up with your written diary of your daughter's symptoms. I've discovered it can go a long ways to helping a doctor make sense of symptoms.

Good luck!

 

[Nakamova]

In the past month I have fallen asleep with her a few times and this is what I have observed:
- multiple leg twitches in the first 15-20 minutes after falling asleep
- leg and head twitches and jerks farther into the night (generally around 1 1/2 - 2 1/2 hours after sleep); last night she had many, many head jerks, mostly pretty subtle
- occasional noises - moaning, loud sighs
- strange events: sitting up and looking around (without rousing), mild lip smacking; and one really odd event in which she sat up with eyes open, smacked her lips and jerked her head to the right and back very sharply, and smacked her lips again before lying down and going back to sleep.

Hi KGartner, what you describe, particularly the last symptoms on your list, sound like textbook Complex Partial Seizure. I agree with the others that it's time to have your daughter's medication reviewed. It's possible that a higher dose of Keppra might help, but if the nighttime symptoms started AFTER she went on the Keppra it's also possible that the Keppra is the culprit.

 

[Kgartner]

Thank you everyone.

I must admit, I am pretty confused now. If what I am describing should at least be classed as "suspicious" - and could possibly be viewed with even more concern - why would her doctor be so categorical in saying that they were nothing to be concerned about? He actually told me that they were "not concerned with nocturnal seizures in her case." Based on what? I don't see why it would be in his best interest to do that - wouldn't he want to know about anything I observed that could even possibly be seizure activity?

It seems to me that even if this is not seizures it is some type of abnormal sleep, and it should be followed up on. It's hard for me to monitor this regularly since most nights she does not ask me to lie down with her, and the events are so brief. I am also trying to not make her worry unnecessarily, so while I have mentioned these events to her I have not made a big deal about them. I do know that they do not happen every night (for instance, last night she was very calm during the sleep that I observed), so it may be difficult to capture them in a sleep lab on or video.

At this point I'm not sure how to proceed with her doctor. I don't want to appear overly worried about things he has told me "don't concern him in the slightest"; on the other hand I don't feel I can back off on this. I do think that in general she is doing well enough that I can take a bit more time and do more observations - hopefully I can figure out some patterns and come into our appointment with more to say.

Ugh, why does this have to be so difficult! For some reason I really thought that when I wrote this up you were all going to tell me that this was nothing to worry about - that suddenly having more movements and restlessness in sleep was a normal thing to see in people with epilepsy but not seizure-related. I really do want to be able to trust her doctor to steer me in the right direction, so I am feeling very off-balance. Lots to think about!

 

[masterjen]

Can you set up a video recorder in her room? An infrared one would function even in the dark. All the doctor would really need are a few examples that are very representative of you have observed and have described to him. Even good quality baby monitor recorders can provide good recordings. You might try posting in the "nursery" section of the forums, and ask folks there what they have done to obtain recordings of their child's seizures and/or night behaviors.

 

[chmmr]

Can you set up a video recorder in her room? An infrared one would function even in the dark. All the doctor would really need are a few examples that are very representative of you have observed and have described to him. Even good quality baby monitor recorders can provide good recordings. You might try posting in the "nursery" section of the forums, and ask folks there what they have done to obtain recordings of their child's seizures and/or night behaviors.

We have a foscam camera that we mounted on the wall. We can view it from our iphone or from our computers and it is set to record movement to the SD card when it happens

 

[QueenieKP]

Has she had any diagnosis of myoclonic seizures? Might explain the jerking. I am terrible dropping off to sleep and thrash around going through sleep states.

I think recording her sleeping would be useful.

Good luck with capturing something to show Neuro and getting some answers.

Q

 

[Kgartner]

Has she had any diagnosis of myoclonic seizures? Might explain the jerking. I am terrible dropping off to sleep and thrash around going through sleep states.

I think recording her sleeping would be useful.

Good luck with capturing something to show Neuro and getting some answers.

Q

No, her diagnosis is complex partial seizures, most likely from the frontal lobe. I have never observed any myclonic-type seizures during the day - the twitching and jerking only happens during the night.

I have been resisting taking the step of recording her during sleep without her doctor's buy-in. My daughter would feel it was very intrusive, and would be much more open to it if it came from her neuro and not from me! But I do agree that some video would be very helpful.

I appreciate all the input!

 

[QueenieKP]

I think your right that your daughters buy in is critical too, but possibly presenting it as an option that you as family consider home video as an option with her consent, may tip the balance from intrusion to pro active sleuthing!

When I was waiting for for tests this time round I asked colleagues at an area team meeting of they could capture anything out of the ordinary on video on phones just because I knew it would help diagnostically and work is probably the only place where you have the luxury of someone to keep an eye on you while you have a seizure and maybe someone to capture you on camera. It sounded really crazy to them but nothing helps the Neuros' but seeing something tangible.

I do understand trepitations of the intrusion it is when we are most vulnerable but I imagine your daughter is a smart young woman and I think given the pros and cons of gathering video evidence she would be able to make an informed choice.

But whatever you decide to do as a family I wish you well in getting the answers to your questions.

Q

 

[Kgartner]

I thought I would update this with the response I got from my daughter’s doctor (I used the messaging system they have at the hospital so that everything is in writing). I described the behaviors I have been observing and this was his response:

“The movements you described all are normal; we actually see a lot of very weird behaviors in sleep that even with EEG are occasionally hard to say with complete certainty whether they are seizures. The episodes early in the evening sound like sleep-onset myoclonus, which is a normal occurrence (you may have noticed from time to time that your legs jerk you awake), and the others sound like periodic limb movements in sleep (I know you're going to Google it, but I'm not talking about Periodic Limb Movement Disorder; it's only a disorder if it's problematic to her or her future significant others!).”

While I am not sure that the movements early in the night are sleep-onset myoclonus (they happen after she has been asleep for 20 minutes or so, and are much more dramatic than any sleep jerks I have observed with my other children or my husband), I am basically in agreement with him. In general I am not overly concerned that these are seizures, with the exception of a few questionable events that have not recurred. I also appreciate that he acknowledges that they might be questionable events, rather than the dismissive response he gave me earlier. Finally, they do not seem to be disturbing her sleep in any major way. She is tired all the time, but I think that is more due to her AED than anything else. So I am not inclined to take any major action right now.

However, he didn’t address my basic question, which is why sleep myoclonus or periodic limb movements would be occurring for the first time now – i.e. is there something about developing epilepsy, or about taking an AED that can cause sleep disturbances? Of course that may be an unanswerable question, like so many other things about epilepsy! I have learned to be OK with observing odd things that just don’t seem to have a clear explanation. I just write everything down, so that if it does seem to be relevant later on I have a record of it!

Based on what the rest of you have said I am going to keep monitoring this whenever I get a chance. I only fall asleep in her room about one night out of four, and I observe an “event” (either jerks/twitches or something more dramatic) about 50% of the time I sleep with her. So I can see if they seem to stay the same, fade away or get worse. If things seem to worsen or progress, I have a baseline I can use to measure that, and I may start to advocate for a sleep study or sleep EEG.

Thank you to everyone who contributed to this discussion! In general my daughter is so lucky, and doing so well (on the 13th it will be 3 months since her last seizure, and that's with her first med and original dosage!) that I only want to rock the boat if it really seem necessary. You have all been so helpful to me as I try to sort through what I need to be concerned about.

 

[Nakamova]

Thanks for the update! I hope your daughter stays healthy and you both get good sleep.

 

[N Sperlo]

Kgartner,
One thing to look into if/when she has a overnight video EEG, be sure they check to see if she is awake or asleep when the larger movements are happening. That was another thing that was odd about my case and was a reason my neurologist decided it was epilepsy related. When these things would happen, my EEG read as if I was awake. I had no recollection of what I was doing.

Thanks for the update.