Is this a new seizure type?

[masterjen]

I'm hoping for input on whether I have a new seizure type or if it is just a different manifestation of the usual nocturnal tonic seizures I have.

I am a side sleeper, and the usual tonics involve my whole body stiffening straight out and pulling me partly onto my back, my arms either come up above my head or if trapped below the blankets they seem to stiffen by my side.

What I have also had in the past couple of months, however, are "episodes" where I remain on my side, my legs stiffen out, my arms and/or hands somehow move against each other and the mattress (sort of a kneading motion), and it feels like every muscle in my torso is very quickly contracting and relaxing several times - I have even felt the bed shake. Because these are nocturnal, and I never wake completely during them (I don't know what if anything happens before I kind of waken and I drift off again before they stop) so it has taken a while to piece together the consistency of what happens, that it wasn't just a dream or something, etc.

What do you think?

 

[Fedup]

masterjen

I think this could be part of your nocturnal seizures, does it feel like you were running or something, that is how it felt for me but everything returned to normal (well normal seizure I meant) after awhile. It seems I was trying to run or jog or whatever on the night. I think it would be no harm mentioning this to your Doctor. Probably do nothing about it but for peace of mine tell them.

 

[masterjen]

Thanks, Fedup. I don't recall feeling like I was running or anything, but if they occur 2-3 times in a night I will have a mild winded feeling for a few hours the next morning. I happen to have my 6-month follow-up with the neurologist in a few weeks, so will mention these different aspects of the seizures.

 

[Nakamova]

It sounds like maybe there is now a "clonic" aspect to your seizing. Tonic is just going rigid, clonic is the contracting and relaxing.

 

[masterjen]

Is it possible to have mixed nocturnal tonic and clonic seizures without them necessarily being tonic-clonic? I've never bitten my tongue, suffered injuries, been knocked out for days at time like many who have tonic-clonics. Plus I have a degree of awareness during both the tonic and clonic events, since I partially and briefly awaken at night during them.
Also, how does one distinguish clonic from myoclonic?

 

[Nakamova]

While the term "tonic-clonic" tends to be associated with a seizure where there's full loss of consciousness, it is possible to have both tonic and clonic movements with full or merely impaired awareness. Some p even have "clonic-tonic-clonics", where muscle contractions are followed by muscle rigidity and then back to the contractions.

It can definitely be tough to tell clonics from myoclonics. Myoclonics tend to be more "jumpy" and shocklike in nature, and can happen as a single instance. But they can also happen rapidly, in which case they would resemble clonic seizures. Since clonic seizures are relatively rare, it may well be that the other kind of movement you experienced was myoclonic instead of clonic.

Do the episodes occur several times a night or just once? Do they occur at roughly the same time of the night each time? Do they occur more than once during the night?

 

[masterjen]

Do the episodes occur several times a night or just once? Do they occur at roughly the same time of the night each time? Do they occur more than once during the night?

These episodes have occurred anywhere from 1-3 times per night, on average once every 7-10 nights in the past 2 1/2 months. My typical tonics may also occur on these nights, but they happen other nights as well and frequently in clusters of 3-5 per night.
I do have a history of myoclonics, and these I recognize as a quick jerk or two of my shoulders or occasionally a leg. These newer episodes I mentioned seem different than myoclonics because it feels like there are several in a row that occur very quickly, and feel like they affect every muscle in my whole torso.

 

[lindsayschu2]

Jen those sound not unlike mine. My myoclonic seizures look kind of like convulsions--they center in my hips, abdominals, and legs. They are very very fast, and I jerk hard, feel like I'm rattling fillings loose sometimes--the movement starts in my hips and center, but sometimes they continue down to my legs, ankles and feet and even toes, but not always. Then the pattern repeats. If I have them very badly, they happen over and over, wake me up completely, and I am wide awake, waiting for the episode to end. I don't lose consciousness but feel a sense of weird and intense energy that builds before each jerking episode, like I'm hooked into a socket. I also have the single jerks here and there you have--these others are more like a much more intense version where many more muscle groups are involved, and whatever pattern I jerk in, is completely symmetrical on both sides of my body, and gets repeated in the exact same sequence until the episode is finally over. There is often a fear it will become a tonic clonic, and my neuro has warned me it may. It sounds like we may have different body parts effected, but does this sound similar?

 

[masterjen]

Hi, Lindsay, and thanks for your response.
Out of curiosity, how do you and your doctor know that what you have are myoclonic and not clonic? How quickly do your jerks happen? Although I am very foggy from sleep mine feel like 3-5 per second but it seems to go on for at least 5 seconds - that is about how long I think it wakes me for but I know a bit happened during full sleep and I am out of it again before it completely stops.
The jerking seems to cover the area between my shoulders and hips, and seems to start with dystonic/tonic stiffening of my legs. My arms feel like they move somehow, like they "knead" each other or the mattress (I am a side sleeper as I mentioned somewhere above). I so wish I would fully waken so I could better process exactly what happens, but of what I do remember the pattern seems consistent each time.
Mine can cluster but rarely if ever in immediate succession; usually I'll get them spread through the night if they occur in multiples.
Interestingly they are generally in the second half of the night, between about 4-7 am. The only reason I know is that I have a very regular bladder (lol) and it wakes me to use the bathroom between 3 and 4, so I know that nothing has occurred before then.

 

[lindsayschu2]

I don't know that my dr does know they are myoclonic for sure--but she thinks so based on the fact that my mom has had an absence seizure, my son had two tc-like seizures when he was an infant, and they get much much worse on gabapentin, lamotrigine and tegretol (which can all make myoclonic seizures worse)--so I seem to have a genetic basis and strong indicators that they are idiopathic generalized epilepsy, on top of what is EEG confirmed TLE. I also have just one leg, hip or foot jerks sometimes, which seem more myo like--it's more whole body when it's worse. I sometimes get a weird pre-ictal phase first, where I can barely keep my eyes open or walk a straight line before I get particularly bad ones while awake. So she concluded they were myoclonic seizures. Each muscle group that jerks is lightening fast--sometimes, like if it's my foot, it will wiggle back and forth so fast there is no way I could possibly reproduce it deliberately. But there are a lot of muscles that jerk in succession, so each . . session. . I guess, lasts about 5 seconds, then a rest, then happens again, same order. More often than not, like you, I'm asleep until it wakes me, then it stops. But sometimes when I'm in really bad phases they keep going after I am fully awake, or happen during the evening or day. Sometimes, like when I was sick, they go status. It used to be if I got them at all I'd get them off and on throughout the entire night. I improved and started only getting one or two at night--I'm back to being a little worse again for some reason right now. Any chance you have sleep apnea? I was never tested but I'm sure that I did--and I know that mine were way worse on the nights I believe the apnea was worse. I really think the lower oxygen made them worse. Stress also makes them worse--probably again, bad stress breathing so bad oxygen usage maybe.

 

[masterjen]

Good thought re. the sleep apnea. I was tested for it about 5 years ago when my seizures started but testing was negative. Thing is, though, I doubt I entered a very deep sleep during the procedure because the contraption they had around my head and on my face was uncomfortable and just plain foreign (I honestly don't know how anyone could have had a sound sleep with that thing!!). About 1 year ago I had a video EEG . . . do you know if this could have given clues about possible sleep apnea even though I didn't have the apnea testing gear on?
My tonic and myoclonic/clonic activity varies as well. Extremely hard to predict, though. I would say that overall a super busy day with stress (either physical such as working out too hard or mental such as when everyone at work is breathing down my neck lol), but not a guarantee by any means.

 

[lindsayschu2]

Yes, busy day with stress, working out too hard for sure can do it to me as well, and cycles--ovulation and the few days before my cycle are by far the biggest triggers. For many months the only time I got them where those female cycle triggers, and I get them mid-cycle every single time. I'd check back on your video EEG--I would think they could see apnea events even if that wasn't the purpose but I'm not sure.

 

[masterjen]

I have an upcoming appointment with my neurologist, so will ask about the VEEG and apnea.
I can't even establish whether monthly cycles were/are an issue for me or not. So often it has seemed like as soon as it seems I am able to establish a pattern (eg. mid cycle, or 1 week before cycle starts, or first few days before cycle . . . ) the pattern falls apart. I am in the process of revising my "about me" section on the forums in hopes that if anyone reads these things they will recognize something about themselves in it and perhaps figure things out.