Status Epilepticus

[s10sleeper]

I am sure that many of us here have experienced a situation of status epilepticus, I know that I have quite a few times, to the point that the doctors actually prescribe me a bottle of ativan to be administered to me sublingually if possible. This has made me wonder as I have searched many places about what meds are used for it and why.

Anyways, I have been trying to find some info in regards to these different medications as for some reason AEDs seem to really interest me, especially in the fact that many of them are not known why they work.

What I have really been wondering lately is if there is any kind of list of meds used for Status Epilepticus, why they are used, their effectiveness and other stats on them. I know that Benzodiazepines are usually first line treatment for them, but I wonder with these different meds, such as the different benzos and all the other types of meds, why certain ones are used more often, how they are administered, their effectiveness and how they work.

I would love to find some kind of data, especially scholarly data with graphs and numbers on it along with other details as this is one of the few things that really intrigues me and can really keep my attention for long periods of time. Otherwise I cannot focus for long periods of time on things that require alot of attention as I start to drift off very badly.

If anyone knows of any good links it would be very appreciated.

 

[Nakamova]

I think Lorazepam (Ativan) is the medication of choice for status because it is fast-acting, and because its anti-convulsant effect lasts 4-12 hours (compared to only 20 minutes for diazepam).

If you scroll down in this link, it talks about the meds administered for status, and why:
https://www.ebmedicine.net/topics.php?paction=showTopicSeg&topic_id=77&seg_id=1530

 

[s10sleeper]

Thank you very much for that info. This is really interesting because a couple of years ago the ER put me on Tramadol for an injury. Later that evening after taking the tramadol I went into a status seizure. According to my brother who rushed me to the ER he said they first ran a tox screen and waited for the results. My brother was yelling at the nurse to give me IV Ativan as that is what I have been given when I was in a sleep deprived eeg study and went status.

After they got the results realizing that I had taken nothing other than my regular meds, they had no idea what to do and were wanting to wait it out. My brother got fed up, called my epileptologists pager and left a message that I was in the ER in Status epilepsy.

She immediately called the ER and was speaking with the Dr while my brother was around, they told her I was in earlier and that they gave me Tramadol for pain. He said he overheard her yelling at them asking why in the world they gave an epileptic Tramadol. They said they were not sure what to do, spoke very briefly and finally put ativan in my IV.

The Dr. said the reason they ran the tox screen was to rule out drug abuse. This sounds pretty sad to me considering that they were not all that concerned about me being status over 30 minutes. For that reason I refuse to go to the ER here at all. I am the same way with the First Care clinic as the Dr. tried giving me a script for tramadol and I told her she'd better look at my list of meds I cannot take. Another time she even tried to give me penicillin, which I am deathly allergic to. The First care clinic is horrible, you wait an hour past your scheduled appt time before the nurse takes you back and gets your vitals, sometimes they even forget to take some vitals like BP and never weigh me. Then you wait in the room another 30 minutes and then the Dr comes in and is out in less than 5 minutes. I have timed them with a stopwatch and it has never been over 5 minutes. They also refuse to call in prescriptions, they require you to take them to a pharmacy. Along with this, their cost for people that make over 900 a month is 150 dollars cash if you don't have full medicaid.

Funny how ER doctors and bottom of the barrel clinics work, huh? LOL

 

[Nakamova]

Yeah that sounds pretty terrible -- and scary. It's amazing that the quality of hospital/ER care can vary so much. To be fair, certain clinics and hospitals are often overwhelmed by patients, and minimally staffed.

It is normal to run a tox screen when someone comes in to the ER with a seizure -- but it's not normal to do so if they are already known to have epilepsy. And it's certainly not normal to withhold medication if they are in status! For my very first seizures (including one I had in the ER) they gave me valium and Dilantin.

 

[Jfpinell]

This sounds pretty sad to me considering that they were not all that concerned about me being status over 30 minutes. For that reason I refuse to go to the ER here at all. I am the same way with the First Care clinic as the Dr. tried giving me a script for tramadol and I told her she'd better look at my list of meds I cannot take. Another time she even tried to give me penicillin, which I am deathly allergic to.

Funny how ER doctors and bottom of the barrel clinics work, huh? LOL

There are hospitals in my area I won't go to again! I even have written on my File Of Life card where I want to go. The last time I was at one in paticular, they gave me 10 Dilantin to take (total 1000 mg) when I was hardly able to sit up yet. Uhhhh...let's see, giving oral medication to someone half into it. Not to mention I've read in drug guides that 1 gram (1000 mg, if my math is right) can be toxic! Then they let me go before I was fully aware of where I was or what was going on yet. (Needless to say I wasn't able to verbalize I don't feel right yet.) Well, I ended up walking out the wrong door, not knowing exactly where I was yet, and (managing somehow without falling) ended up walking all the way around the building trying to "find" where I wanted to (needed to?) get to.
Helloooooooo! Can you say "liability" Doc.??? What in blazes would they have done, or what would've happened to them if I would've walked out into traffic??!! (That's exactly how bad I was yet at that point....after I was able to think and reason again -about an hour+ later- I was scared to death when I realized what had happened and that I didn't wander out into the street!) You'd think that even if they were busy, they would've noticed how out of it I was and at least told me to go sit down and have the staff keep an eye on me to make sure I didn't try to go anywhere. (I've been going to that hospital ever since I was a baby, so you'd think it would say in my chart how often I've been there and my condition.)
By the way, this is a well-established hospital running for over 100 years!

 

[s10sleeper]

Yeah, unfortunately the ER in this city and what they call the First Care Clinic, which is the only place that accepts patients without full insurance, as all I have is the medically needy plan, are horrible. I have talked to others that go there but have full BC/BS health insurance and they get treated great.

I think they seem to have things against people that are on disability and state assistance, especially when they normally look healthy as I don't show any physical problems other than my scars on my head from surgery.

Oh, yeah, another funny one, when i went to the first care clinic, not only did they try to prescribe tramadol, but they wanted me to have my back MRI'd. That one was real funny because it says in my folder do not give me an mri due to my RNS implant. It also says it on my ID card and also on my medical bracelet. I told her I would not do it and she asked me why. Needless to say, currently I have no regular doctor, just my epileptologist and the mental health center. I finally got on the states Working Disabled plan which I have to pay a monthly cost for, but then there is no spend down, so I have more doctors available to me.

 

[Endless]

Sleeper & Everyone else,

I'm so sorry you got such terrible care from the emergency room. Care really IS variable, depending on both the hospital and the skill of the ER doc that you get. I've been treated by the ER in my local hospital and I won't go back. I was misdiagnosed. I went home and laid low and my regular doctor called me the next day saying she'd gotten the test results, called me into her office, and took care of it there.

I've asked my family that if I have a choice, I want to be driven into the city to one of the better hospitals. I got fabulous care in the ER there. I was treated by a doctor that looked like he was about 12 years old, but I got fabulous care.

Sleeper, you asked for articles with pictures or graphs. Here are a couple more links with flowcharts and graphs.

http://www.gosh.nhs.uk/clinical_information/clinical_guidelines/cmg_guideline_00038

http://faculty.neuroscience.ucla.edu/institution/publication-download?publication_id=224363 (look on page 7)

 

[s10sleeper]

Thank you so much, Endless, that first one was exactly what I needed, easy to understand and look over. It seems to me that according to this the ER here in this town has no clue what they are doing. LOL

Oh well, at least I survived, although I never realized it was considered status after 5 minutes as I have had many in the past that lasted over that. I did know however that a seizure longer than 5 minutes may cause some damage, especially with mesial temporal sclerosis as I have found out, I don't recall where, that this could be the reason my seizures came back worse and continued to get even worse as they progressed these past few years. I am really starting to thing that the Neuropace RNS is helping alot though as my seizures have seemed to become completely nocturnal these days except for some auras, though when they do happen I still don't go into a complex partial until I start to fall asleep.

Anyways thanks again for the info. Graphs and spreadsheets are the easiest for me to comprehend and I love learning more info about epilepsy.

 

[illuminatedsquid]

Similar question
Can you go into status Epileptus and it stop on its own by falling into deep sleep.
With going to Emergency Room.
I have had clusters seizures back to back and I think after at least 1 generalized one .
as far as I know I just blackout and go into deep sleep.
Unfortunately. We have 1 hospital where I live so I assume it's. Like hit or miss with whose on call , don't. Really know.
Thanks for the info.

 

[illuminatedsquid]

Is this a dead thread ,oh while

 

[MAB]

I am sure that many of us here have experienced a situation of status epilepticus, I know that I have quite a few times, to the point that the doctors actually prescribe me a bottle of ativan to be administered to me sublingually if possible. This has made me wonder as I have searched many places about what meds are used for it and why.

Anyways, I have been trying to find some info in regards to these different medications as for some reason AEDs seem to really interest me, especially in the fact that many of them are not known why they work.

What I have really been wondering lately is if there is any kind of list of meds used for Status Epilepticus, why they are used, their effectiveness and other stats on them. I know that Benzodiazepines are usually first line treatment for them, but I wonder with these different meds, such as the different benzos and all the other types of meds, why certain ones are used more often, how they are administered, their effectiveness and how they work.

I would love to find some kind of data, especially scholarly data with graphs and numbers on it along with other details as this is one of the few things that really intrigues me and can really keep my attention for long periods of time. Otherwise I cannot focus for long periods of time on things that require alot of attention as I start to drift off very badly.

If anyone knows of any good links it would be very appreciated.

I don't have any links for you, but my neuro put me on klonipin for status seizures because I was already taking it for sleep issues. The sleep issues had been treated by a different doctor, the neuro just increase the number I get per month. It didn't help so she switched me to ativan as the rescue med and it really seems to help more.

 

[Nakamova]

Can you go into Status Epileptus and it stop on its own by falling into deep sleep?

I think one definition of Status Epileptus is that the seizures don't stop on their own without emergency treatment. Because status can be life-threatening and/or brain-damaging, EMTs or ER docs will try to stop the seizures with different fast-acting medications. But this is the protocol for unremitting tonic-clonic seizures. If you are having persistent partial seizures it can be trickier to diagnose and treat.

 

[MAB]

I think one definition of Status Epileptus is that the seizures don't stop on their own without emergency treatment. Because status can be life-threatening and/or brain-damaging, EMTs or ER docs will try to stop the seizures with different fast-acting medications. But this is the protocol for unremitting tonic-clonic seizures. If you are having persistent partial seizures it can be trickier to diagnose and treat.

So I should go to the ER if I don't have any rescue meds? I have only had simple partials but they go on for hours at a time, sometimes they come in waves for a couple days. It happened so often before I was diagnosed in October that it just seems normal to me. I am on lamictial and at first was under good control but lately not so good. I just figured they wouldn't believe me because they are all sensory in nature abd no one is aware of them except maybe my husband but only after I am exhausted and confused.
Doctor gave me a few ativan but I don't see her again until December.

 

[Nakamova]

I think the treatment is less clear if the seizures are partials rather than t-cs, so you should check with your neuro about the best course of action. My guess would be that if the ativan works to stop them, then your neuro could prescribe you some ativan to use on a short-term basis when the partials won't stop. You should definitely try to meet with her sooner to find a way to get the partials under control, maybe by tweaking the lamictal dose.

 

[Formyson2]

MAB- thank you for this post. This is the first time I have heard of anyone saying their seizures last for hours at a time. Dan's events have lasted from 45 minutes to 3 hours. I haven't seen any information other than 5-10 minutes. Nice to know I'm not totally crazy with my observations.


~Nancy~

 

[MAB]

MAB- thank you for this post. This is the first time I have heard of anyone saying their seizures last for hours at a time. Dan's events have lasted from 45 minutes to 3 hours. I haven't seen any information other than 5-10 minutes. Nice to know I'm not totally crazy with my observations.


~Nancy~

No your not crazy or if you are, I am too. Sometimes they come and go for a coupe days.

 

[MAB]

I think the treatment is less clear if the seizures are partials rather than t-cs, so you should check with your neuro about the best course of action. My guess would be that if the ativan works to stop them, then your neuro could prescribe you some ativan to use on a short-term basis when the partials won't stop. You should definitely try to meet with her sooner to find a way to get the partials under control, maybe by tweaking the lamictal dose.

Thanks, she had me on klonipin but that wasn't working well. I asked my husband if he would give me one ativan to try and it seemed to work better. I was kind of afraid to tell her but she didn't seem surprised that patients occasionally share drugs. Anyway she gave me a 3 day trial supply and they did work well. I need between 1 to 1/2 mg to stop the seizure. I have asked for a refill because we are going out of town for 2 weeks and will be 30 miles away from just about everything.

She has increased my lamictial so I'm hoping to get things settled down soon. Every time I have long lasting partials my memory becomes worse, more confused and I make many more mistakes at work. Also I am afraid that the longer they last the more likely they are to change to another kind of seizure.

 

[Joyful]

I have had status, too. Not fun. Ended up in ICU once b/c of it. I was told I almost died.
(that was several yrs. ago)

I do have a question, though. If you are experiencing constant auras (partials) - lasting for days, and then finaly have a grand mal, is that considered status epilepticus ? B/c that happens often - I never have tried to stop the auras b/4 - just when jerking of limbs has been occuring for a while.
My husband usually gives me attivan then - then usually right after taking an attivan I'll lose conciousnes (grand mal) and sleep.


My memory is terrible as well. I never thought that it had anything to do w/ the auras, though. Thanks for pointing this out.

 

[stilldancing_98]

IN case my son goes into status he takes midazolam. At home , at school or anywhere. It is thru the nose. Iam so so tired of seizures. They put me in the hospital ,my heart stopped,They broughtme back. I'm going to bed. I'm 50 tomarrow.

 

[nightowl47]

I think one definition of Status Epileptus is that the seizures don't stop on their own without emergency treatment. Because status can be life-threatening and/or brain-damaging, EMTs or ER docs will try to stop the seizures with different fast-acting medications. But this is the protocol for unremitting tonic-clonic seizures. If you are having persistent partial seizures it can be trickier to diagnose and treat.

My Neuro gave me Me Ativan too, but, that's only after I have a Grand-mal seizure, so I wouldn't go into another one later on.

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