This just crossed my mind....

[Rae1889]

Hey everyone. feeling much better since the seizure episodes over the holidays. but thought up an odd question. I tried searching this but i couldnt find anything that clarified it.

I know that they say your supposed to time how long a seizure is so that you know when its time to call an ambulance *5 minutes or longer for T/C and nothing over 10 minutes* but i was thinking when does the timing actually start?

for example: i'll usually end up having an aura that will last about 3 minutes *which is technically a seizure* and then it morphs into a complex partial sometimes, which last about 3 minutes as well. if it generalizes into a tonic clonic, which for me usually last about 3.5-4.5 minutes then that actually is about 10.5 minutes of seizing or longer depending on how long my aura or complex partial lasts. Should we be calling after the complex partial generalized, as its most likely been already 6 minutes or more of non-stop seizure activity. not counting if any myoclonics are active before anything else?

thanks!

 

[Nakamova]

I think it's when someone's unconscious and convulsing is where the timing should start, since t-c's are what can potentially lead to status epilepticus.

 

[foreverdark]

I've often wondered on this subject. When should my wife call 911? Or, frighteningly (even though she has been taught what to do) our 7yr old. My Neuro (that I remember) never told us.

 

[Meetz1064]

This is

what I have told anyone when they have asked me the same question:

IF you are sure that a seizure of any type is going on, (based on previous behavior patterns) go ahead and start timing it when you know its happening. The reason?? Because occasionally partials CAN go into status. And if they do, the doctors/paramedics need to be aware of that. Simply because if a patient IS in Non-Convulsive Status Epilepticus (although it's not too often), the doctors can give the necessary and appropriate meds at the right times, and less problems will occur for the patient.....

Does that make sense??? I'm a wee bit tired, and rambling.....

 

[Aubrey]

I do not have people call the ambulance unless I do not come out of the convulsive phase of the tonic-clonic for plus 5 minutes or unless I injure myself in a way that warrants medical attention, but that's just me. If they are going to help you in a way that might be needed and cannot be accomplished at home then go. For me that is usually not the case. Tonight I had my first tonic (except the one when I forgot to take my meds) since June while playing Bionicles with my 10 year old. I almost never play this with him and then when I do this happens.

 

[Aubrey]

I'd like to qualify my response - the people around you should be informed as to what is "normal" and what isn't for a person. If it varies from normal being more extreme than they should call. As Meetz points out, there is such a thing as non-convulsive status
It would probably be easier on a 7 year old to just give them one choice as to what to do (i.e. call ambulance) because having to decide among multiple choices might be too big a responsibility for someone so young. If they have to worry about making a wrong choice that would not really be fair to them. It depends on the child. My older son at 8 could guide me up on to the couch and call my mom down the street. My younger son at 10 with everyone home and only a very brief tonic is totally unnerved.

 

[Rae1889]

The reason I ask is because I can sometimes go from one absence to another *lasting about 3-5 seconds each* every 10 to 30 seconds. This has ONCE lasted an hour. is this called a cluster, or is this status...or is there a difference? and how do we tell?

i have also gone recently *as the meds have seemed to really show their wonders because my complex partials dont generalize nearly half as much* from one complex partial into another with about 1 minute in between. and i have had about 3 or 4 in a row. again, is this status or clusters?

I am slightly worried as I am prone to having lots of seizures in clumps. Its even normal for me to have 2 or 3 tonic clonics one after the other with about 10 minutes in between and usually i dont wake up, as i'm sleeping hardcore.

 

[Nakamova]

Rae -- here's the official (wikipedia) definition of status:

"Status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes (or shorter with medical intervention). There is some evidence that 5 minutes is sufficient to damage neurons and that seizures are unlikely to self-terminate by that time. First aid guidelines for seizures state that an ambulance should be called for seizures lasting longer than 5 minutes."

Based on this definition it's a little hard to tell if what you are experiencing is status, but it is definitely worrisome. While you are out-of-it between the multiple t-cs are you unconscious or just sleeping? Either way, I would definitely check in with your doc to get sense of what to do. If there's any doubt, play it safe and call 911.

 

[Chris515]

Thanks for that Nakamova.

My wife just told me the other day that I had three nocturnal tc's on the 24th/25th. (Merry Christmas...) They happened about 10-20 minutes apart and lasted for only 2 minutes each. Apparently I didn't regain full consciousness between them, but they weren't nearly as severe as other ones I've had. The only difference being three medium severity tc's instead of one really really bad one which is what I usually experience.

When I woke up I realized that I had one, but didn't realize it was three.

Do you think she should have called the ambulance?

Thanks!

 

[Meetz1064]

I think

that if another one had happened, yes, she should have called. BUT, they were short, especially in comparison to what you normally have.....the major difference is that this was a CLUSTER of t/c's, and evidently you don't normally have that.

If you haven't made your neuro aware of that already, you need to do so NOW. You're probably going to have to step up your meds a bit...

 

[Nakamova]

I agree with Meetz -- a cluster of tonic-clonics is a bad trend and needs attention ASAP.

 

[Chris515]

Thanks guys...

I thought I was doing so well. I went months without any activity at all, not even partials. And then this happens right out of nowhere.

I have talked to my neurologist and he wants to put me on clobazam. In addition to the 275mg twice daily of lamictal that I am on.

I am worried about taking clobazam because of tolerance and possible addiction but he doesn't want to put me on anything else or put me on more lamictal.

Could this be a one off??

Is clobazam safe??

 

[Meetz1064]

Clobazam, if

memory serves me correctly (HA) is one of the benzo's. Which, you're right in worrying about, could be addicting.

HOWEVER. I am on Clonazepam (Klonopin) 2x a day, but only .5 in addition to 3 other AEDs. Here's what I honestly think:

Ask to start out with a LOW dose. I've been on this low dose for quite some time (years) and have gone on and off of it a couple of times, without a problem. That does not mean it is always the case, but starting out with a really low dose on a benzo is ALWAYS a good thing anyways.

It IS possible that it is a one-off situation as you put it, but it is also possible that you may go through this again....and again....and again...now that your brain has figured out how to kindle that fast. Do you want to take that chance?

Also, if you haven't done anything about it, you really may want to consider the diet option. Yup it's a pain in the arse, but it does quite often help....

 

[Rae1889]

Thanks guys. between tonic clonics, no I don't think I even open my eyes. I am at work so i cant ask chad at the moment, but I know he tells me regularly that I fall into such a deep sleep that it is VERY hard to rouse me and I often don't wake up at all for up to an hour afterwards. then moan and groan and tell him to bugger off and let me sleep.

this Status/Cluster is pretty common with me. usually one seizure with lapse into the other without any time in between like i said before...SP to CP to TC and repeat if my brain feels the need.

so in total I have had simple partials lasting over half an hour. like one continuous partial. *the "tiny witches" flying into my line of sight at the sides and directly in front* and I know that they are there as sometimes I'll also smell burning rubber or something really chemical at the same time or it morphs from one to the other continuously.

another strange question. When I am having a partial, I don't know i'm having it until it stops. Like, I can't think in my head...Oh god I'm having a seizure until its actually over. or its sort of like a light switch clicks and it makes me realize that its going to generalize. then I can say I'm going to seize. otherwise I won't notice that what is happening isnt normal

 

[Nakamova]

Even if you are sleeping rather than technically unconscious during the downtime between tonics, I would worry that your seizing is getting into a bad pattern. Worth talking to the neuro about, maybe adjusting meds, or trying something else to achieve better seizure control.

The few times I've had a simple partial it's been a similar sensation for me -- no tiny witches but I don't realize I've had it until the moment that I "return", even if the length of the simple partial is seconds.

 

[foreverdark]

I'd like to qualify my response - the people around you should be informed as to what is "normal" and what isn't for a person. If it varies from normal being more extreme than they should call. As Meetz points out, there is such a thing as non-convulsive status
It would probably be easier on a 7 year old to just give them one choice as to what to do (i.e. call ambulance) because having to decide among multiple choices might be too big a responsibility for someone so young. If they have to worry about making a wrong choice that would not really be fair to them. It depends on the child. My older son at 8 could guide me up on to the couch and call my mom down the street. My younger son at 10 with everyone home and only a very brief tonic is totally unnerved.

Oh, she is to call the ambulance if "Daddy falls and shakes or is sitting and starts to shake". No questions asked. Our new problem is this.

My Neurologist said I have "Complex partial Epilepsy with second generalization". I don't know what that means exactly. I may have mentioned that here before, but I don't remember. Well the other night I didn't convulse, just stiffened. So after I read this thread, I had never heard of this Status Epilepticus before or timing seizures. When someone doesn't convulse, is there ANY sign of seizure that she may look for? Sorry, I know this went slightly off topic, just scared now (again, just like when this all started), and now without a neuro even more so.

 

[Nakamova]

"Complex partial with secondary generalization" means that you have complex partial seizures that can then generalize into tonic-clonics.

Complex partials don't involve full loss of consciousness, but they do involve loss awareness on your part, and an inability to respond. So if your daughter can't get you to respond, that's one sign. Some folks have automatic behaviors during complex partials, like arm movements, or chewing, or rapid blinking, or staring, so if you know what your symptoms are, those are what your daughter should be made aware of. In some complex partials, it's not always obvious to an observer that the seizure is happening, so that might be a bit trickier if that's the case for you.

 

[foreverdark]

"Complex partial with secondary generalization" means that you have complex partial seizures that can then generalize into tonic-clonics.

Complex partials don't involve full loss of consciousness, but they do involve loss awareness on your part, and an inability to respond. So if your daughter can't get you to respond, that's one sign. Some folks have automatic behaviors during complex partials, like arm movements, or chewing, or rapid blinking, or staring, so if you know what your symptoms are, those are what your daughter should be made aware of. In some complex partials, it's not always obvious to an observer that the seizure is happening, so that might be a bit trickier if that's the case for you.

Oh man, why couldn't I have an easy disease?? (sorry, bad joke, but MAN!) Anyway, thank you Nakamova. We don't know, really. All my life I've been known to "drift" or get sudden jerks somtime's making a small noise with the jerk. Don't know. Guess I'm off to do some searching/researching. Bookmarking anything that sounds like me.

Again, thank you... I love this place!!

 

[epileric]

Oh man, why couldn't I have an easy disease??

check my signature.lol

 

[Jessdenn82]

when to call EMS

we tell our patients in the ER or their family members to actually call immediately if u have an aura and know one is coming on to call or the minute someone around you sees you go unconscious to call the reason we say this in a perfect world EMS would get to your house fast put as we all know that doesn’t always happen and if you wait until your are 5 or so min into it and then call outcomes are way worse and also got to remember just cause EMS is called doesn't mean you have to go to the hospital you can sign a paper and not go if it was a fast one but I hate to say you also have to take into account weather time of day etc like I know working in ER if we’re having an ice or snow storm unfortunately people are going to die cause EMS can't get to people fast enough just a thought to think about also when talking to dispatcher on the phone make sure to let them know exactly what is going on cause this determines if they send someone that has experience with basic life support or advanced cardiac life support and it makes a big difference there is not always a paramedic that is on board when answering a call it determines what the call is to who comes to your house also another fear is if you have eaten or drank anything that could cause u to aspirate even if you come out of it fast if you aspirate you need an advanced airway put in just thoughts for u all to think about :soap: