Hi all, All guidelines, reviews and textbooks seem to ignore the question of which second-line AED to administer in a patient with status epilepticus already taking Levetiracetam, Phenytoin or Valproate. Information of missed doses or malcompliance is generally not available when the patient presents to the ER. Since this is not an uncommon situation I turn to you for advice, maybe I missed something.

It seems reasonable to me to go with a new agent unless there are clear indications that the patient has stopped taking their prescribed AED. And in the case with Phenytoin I’d probably give another AED in most instances given the unpredictable pharmacokinetics.

https://doi.org/10.1212/CPJ.0000000000001009

https://pubmed.ncbi.nlm.nih.gov/34840870

Abstract

Purpose of Review

Ketogenic diet therapy can be used as an adjuvant treatment of super-refractory status epilepticus (SRSE). However, the drug and metabolic interactions with concomitant treatments present a challenge for clinicians. In this review, we focus on the practical considerations of implementing ketogenic dietary therapy in the acute setting, including the dietary composition, potential drug-diet interactions, and monitoring during ketogenic treatment.

Recent Findings

This report describes the ketogenic diet therapy protocol implemented for the treatment of SRSE and a review of the current evidence to support clinical practice.

Summary

The control of SRSE is critical in reducing morbidity and mortality. There is emerging evidence that ketogenic diet may be a safe and effective treatment option for these patients.

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Open Access: False

Authors: Neha Kaul - Joshua Laing - John-Paul Nicolo - Judy Nation - Patrick Kwan - Terence J. O'Brien -

Additional links: None found

https://doi.org/10.1016/j.seizure.2021.11.012

https://pubmed.ncbi.nlm.nih.gov/34872019

Abstract

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Open Access: False

Authors: Gia Melikishvili - Thierry Bienvenu - Nazhi Tabatadze - Tamar Gachechiladze - Ekaterine Kurua - Sophio Gverdtsiteli - Mariam Melikishvili - Olivier Dulac -

Additional links: None found

I'm trying to figure out whether or not I had status epilepticus last night. For those of you who've had it, what did you have when you woke up from an episode?

I have a puzzling case study and trying to think of creative things that might fit.

So I haven't posted in awhile but uhhhhh guess who's got two thumbs and has gone to the ER twice in the last month for status epilepticus lasting around half an hour. Fun unrelated fact that I did not know, but kidney infections/UTIs can cause breakthrough seizures lol. First trip I got stabbed 6 times to get an IV and an EMT had to sit on top of me to get a line in and administer emergency meds, the second one I was at work and ended up getting blood on my lab coat (my work said i can keep it now lol so souvenir ig) But uhhhh if you're having abdominal pain and cramps after eating, constipation, lethargy, and loss of appetite you might have a kidney or upper urinary tract infection. I didn't have any of the usual symptoms of UTI like burning or blood during urination so I got blindsided by that. It was apparently bad enough that I was about to go septic. I got put on antibiotics and in the last month Ive gone from 750mg 2x day to 1500mg 2x day so everythings good now! Anyway listen to your body, take care of yourself, don't hold in your pee, make sure you wipe front to back ect ect

I've technically been in status epilepticus before (there've been a few times where my seizure has been a little over 5 minutes or I've had more than one in a row), but my seizures have always stopped on their own (as far as I know; I've woken up in the hospital a couple other times but don't remember being told I needed medication).

Recently I was out of state and could not take my cannabis oil with me, and I let myself get too dehydrated, and I think that combo triggered a seizure in my sleep. My dad found me seizing on the floor the next morning in our airbnb after waiting about 10 minutes for me to turn off my alarm.

Apparently I fucked up when talking to my parents about how to respond to a seizure; I went over first aid with them when I was diagnosed close to a decade ago, but since then I've mainly just complained about people calling 911 over a really short seizure or about how some TV shows will show doctors restraining people having a seizure. So when my dad called my mom for advice, she immediately told him to leave me alone because she thought I'd be upset if they messed with me.

I was on my stomach, face on the floor, making horrible sounds that sounded like sleep apnea plus aspiration, and my parents waited 45 minutes to call 911. I'm still not sure if some of my symptoms now (blurred vision in one eye, memory/executive functioning issues, and moodiness) are me still recovering from the seizure or are signs that I went too long with too little oxygen.

I'm terrified to sleep now; what if it happens again? I put up a seizure first aid poster by my bed, got a medical alert card, and talked with my parents about what they should do if this happens again, but I still feel so powerless. My doctor can't fit me in for another month and a half, and so much could happen between now and then. I hate this so much.

He has never had seizures before (I do though) but he seized for 30+ minutes (15 minutes at home while waiting for the paramedics and then 15 minutes while getting ready to go to the hospital). I honestly thought I was watching him die.

I don't know what I'm writing this for, except maybe to get stories from other parents with epileptic children?

I also can't help feeling like it's my fault. I love him and can't imagine my life without him, but I never wanted to have a child because I was always scared of passing on my epilepsy.

https://doi.org/10.1016/j.ebr.2021.100456

https://pubmed.ncbi.nlm.nih.gov/34095805

Abstract

The ketogenic diet (KD) may have a role in treating super-refractory status epilepticus (SRSE). Predominantly used in paediatric epilepsy, there are few reports of its use in adults. We describe a 19-year-old man with UBE2A deficiency syndrome, drug resistant generalized epilepsy, and severe intellectual disability, who developed SRSE. Initiation of the KD on day 81 of his intensive care unit stay and achieving a state of ketosis seven days later resulted in SRSE resolution and discharge from hospital and recovery to his normal cognitive state. Initiating the KD required a multidisciplinary team for diet initiation and carer education. The KD requires a prospective study of efficacy for SRSE and this should include adult patients.

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Open Access: True

Authors: Christopher Martin Allen - Christiana Avye Hall - Naomi Elizabeth Cox - Hayley Ryan - Thearina De Beer - Michael Francis O'Donoghue -

Additional links:

https://doi.org/10.1016/j.ebr.2021.100456

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8164013

My apologies if the flair is wrong, it kind of is my story but then a general question of everyone else's experience. I've only had 2 known seizures, but each were pretty progressive and prolonged, I have no memory of days around them, and they were considered status epilepticus.

While I found out a bit through reading here and on other sources, my Neuro was the director of a level 4 epilepsy center. And she insisted I not pay much attention to Google. But I insisted, if I can take nothing more than your clinical notes and put them in Google and get nothing but some pretty scary cases... She wouldn't even give me the MRI images, I had to take a screen shot in a virtual meeting with an oncologist to confirm it was cyst and not a tumor.

Not sure if this is a rant, a poll, or whatever. I just hear a lot here with people asking questions, make sure you see a level 4, ask this and ask that. And while I didn't intend to, for whatever reason the director took direct notice but then... after that. Keppra got me REALLY annoyed. So now I am on Lamictal which seems to be far better for me. But other than that, they aren't really interested in other symptoms. It just seems like the entire seizure disorder field is so broad, there are far more people with far worse symptoms, so if you just got some 'odd' feelings and perspectives its just... don't worry about it. Take some time and rest. WTF you talking about? I'm in a factory in the middle of troubleshooting and repairing shit and out of nowhere it feels like a Freddy Kruger horror movie and for no reason its like I am living in a nightmare... where as before the 'seizures' it was the opposite. Like God or an Angel was replaying a dream, affirming my choices, prophetic. And this was... the world is going to burn! For no good reason. "just relax. It doesn't seem related. Quit looking at Google."

Ok so its rant. If spent my entire life avoiding doctors because they are stupid.... and here I am. Literally trapped into dealing with them because if I don't comply and do what I want my car insurance, my companies insurance covering the liability of my work... can't drive but can't get disability.

W.
T.
F.

You're backed into some legal insurance loop of bullshit. I've paid my taxes. Never claimed any unemployment or disability or anything. Worked all over the world, no shit the only person in an entire billion dollar company that knows a key piece of equipment because I worked

https://doi.org/10.1080/14737175.2021.1956905

https://pubmed.ncbi.nlm.nih.gov/34275391

Abstract

INTRODUCTION

Early use of the ketogenic diet (KD) is described as having a particular interest for super-refractory status epilepticus and febrile infection-related epilepsy syndrome. The authors conducted a systematic review of the available data on the KD for refractory and super-refractory status epilepticus.

AREAS COVERED

Following a systematic bibliographic search, the authors found 15 published papers: 2 prospective and 13 retrospective studies. Most often, the primary aim of the retrospective studies was the efficacy evaluation of the KD for refractory or super-refractory status epilepticus. Four studies focused on the use of KD for NORSE/FIRES. These initial studies suggested that KD was effective in these conditions, and that it showed mild and manageable side effects.

EXPERT OPINION

The published studies provided enough preliminary data to validate the feasibility and safety of the use of KD for refractory and super-refractory status epilepticus. Further studies demonstrating the efficacy of the KD in these indications are needed. Possible design and endpoints are discussed.

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Open Access: False

Authors: Blandine Dozières-Puyravel - Sophie Höhn - Stéphane Auvin -

Additional links: None found

Male. ~30 years old. Pipe smoker here and there. Over half a dozen prescriptions not relevant to the context of this.

I know there's likely not a magic number for this but trying to search google is pulling too broad of results and I don't see my neurologist for a few more months.

Back near the end of 2018 I went into status for a couple hours (after reaching the hospital so about 2.5-3 hours). After a few drugs failed they put me into a medically induced coma for a week or so, pulling me out here and there and putting me back under until I was able to come out normal.

During that time when they talked to my wife they told her I may (more-so, quite possibly) come out in a vegetative state or unable to talk. I'm not sure if it was from the seizure itself or because I guess I died a little bit though they've never told me how long. I'm assuming since I was already in the hospital not too long...? I know that after a few attempts then being able to successfully walk (though rather weak) they acted surprised I was able to do so.

I was just looking over some recent test results and my curiosity rose so I was looking back on them from that period and well, this question came into my mind. I have to be honest ... there's not a night I don't think about this when lying down. If she wasn't off of work that night, I wouldn't be here. We've something setup for monitoring now so, so long as it contacts her in time and I don't choke on my vomit she can call an ambulance but this is really bugging me.

Sorry this technically isn't about an immediate medical concern (though it can happen any time) but I'm sure some other folks over on r/epilepsy would also like to know. It may also alter some of the emergency plans we have in place. Right now we try to be a little lax because we don't want to waste the hospital's time if not needed (though I've still gone when required).

I'm just one of those that feels a little better knowing what they're facing, even if it's worse than expected. Let's assume roughly 3 hours of seizing with it continuing bad enough that once the phenobarbital wore down it continued off and on for some parts of a week.

Not sure where to start. 35 female in amazing shape, I had my first ever Grand Mal seizure March 2020 following a terrible virus (was tested many times for COVID- all negative but tests were new and seizure medications can negate them) I had several grand mals following as well as focal seizures then entered status epileptics. I was put into a coma... put on every seizure drug known and has no brain activity for a couple days. Eventually I was also given rituximab and came back. I have amnesia but other than that function completely as I did before March. I am now on Phenobarbital Vimpat Briviact Fycompa Onfi They tried to wean my Phenobarbital and I started having seizures again- about once a month. I feel like they are related to my menstrual cycle. I have two little ones at home so sufficient sleep is a luxury.

Anyone else experience anything similar regarding ovulation or period? I have a million other questions but I will start here.

When I (24 m) was 17, I was hit by a huge truck. I don't remember what happened, because I was in a coma for a month and I had a traumatic brain injury. I've recovered extraordinarly well though, and I am proud of that. However, this last september 2019, while I went to sleep, I suddenly had a status epilepticus . i had a series of non stop seizures, and I choked to death upon my saliva.My mother heard me and called 911. I've been told that the paramedics had to revive me. In a matter of speaking, I was dead.

I have never had seizures before. This was very surprising.

I almost certainly have a form of traumatic epilepsy, caused by the damage to my brain after the accident all those years ago.

Now, I have been on dilantin since, and I have experienced no such episodes. I ensure I get 7-8 hours of sleep per night and I eat a lot of protein. I don't usually drink ,but sometimes , at parties, I do binge drink . I know it is bad, and I am trying to attending those sorts of parties.

I am not on a keto diet, but I eat a lot of meat, fish, seafood.

Still, I am worried. I should say, I spend a lot of time in front of screens, for video games, internet browsing, reading/homework at university, etc. Are screens a serious risk factor for seizures?

Are there any big risk factors I should know of?

What can help?

How do I deal with the fear that every time I go to sleep, I might actually just have another status epilepticus, but this time, there is no one to revive me?

Thank you

My brain's pretty fried, so won't make this long: a couple days ago I went into status epilepticus (starting with a series of partial seizures, ending with tonic/clonic) due to hyponatremia (low sodium levels) caused by Oxtellar. I was home alone when the paritials started and didn't really realize the significance of what was going on. Husband called me at some point and later told me I sounded "weird" so he came home, and also saw me have some partials, but also didn't realize what was going on. And the kids had to be picked up. But he decided he'd take me to the ER after he got back, so he called his parents for help watching the kids, thankfully. He left but when he came back, he found me lying on the ground, unconscious, in the garage. Called 911. He said I started another seizure then, that lasted a few minutes. I was coming out of if by the time help arrived. Think they gave me Ativan (lorazepam). No more seizures after that, but, shit. That really came out of left field. I was pretty damn lucky not be in a more dangerous situation...So glad I wasn't caring for my kids at that time, or driving, or doing anything like that.... So now Fycompa. Or Depakote, if I can't tolerate Fycompa.

Well I hope none of you went through anything like this, but if you did...how long did it take for your brain to "settle" after status epilepticus? I'm wondering how much of my slowness right now is due that, versus the new med. Are there permanent effects of SE? Thx

Went to the hospital sunday after having a status epilepticus episode and to be honest my anxieties never been so bad :( having a respirator down my throat and a catheter down below was one of the most terrifiying experiences ive had and i can't stop panicking that its going to happen again and kill me. Probably triggered by missing a medication dose. How do i stop having anxiety over this?

https://doi.org/10.1055/s-0040-1719077

https://pubmed.ncbi.nlm.nih.gov/33155184

Abstract

Ketogenic diet therapies are high-fat, low-carbohydrate diets designed to mimic a fasting state. Although initially developed nearly one century ago for seizure management, most clinical trials for the management of drug-resistant epilepsy in children as well as adults have been conducted over the last 3 decades. Moreover, ketogenic diets offer promising new adjunctive strategies in the critical care setting for the resolution of acute status epilepticus when traditional antiseizure drugs and anesthetic agents fail. Here, we review the history of ketogenic diet development, the clinical evidence supporting its use for the treatment of drug-resistant epilepsy in children and adults, and the early evidence supporting ketogenic diet feasibility, safety, and potential efficacy in the management of status epilepticus.

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Open Access: False

Authors: Tanya J. W. McDonald - Mackenzie C. Cervenka -

Additional links: None found

Alright, so I get this is kind of a ridiculous hypothetical, but someone asked me the other day and I didn’t have a great answer:

If you had an adult patient in a status seizure (no head trauma, not pregnant, normal BG, no poisoning) and were unable to administer your normal BZDs (perhaps your partner mistakenly swallowed the narc box or you hurled it off a bridge in a fit of rage) are there any medications on your truck that you think it would be worth asking Med control for orders to administer?

I thought about ketamine but a little reading suggests it’s pretty useless for status until much much later when it becomes a ‘super refractory status epilepticus’.

Mag also seemed like a possibility but not a particularly promising one: https://www.ncbi.nlm.nih.gov/m/pubmed/26552572/

Any other thoughts?

Thought I'd post my recent seizure ordeal...

(All recounts are from my AwesoMom, as I don't remember my seizures!)

Recently back from a three-night stay at my local hospital. Previously we've been instructed that I should head there if I have more than two seizures in twenty-four hours, so after my third we headed down.

Triage confirmed our hunch (Status Epilepticus) and right when I was being admitted: seizure number four. This one was bad... I cracked my skull open! They actually had to staple my skull closed.

My memory's SO bad. It's weird: it feels like I was at the hospital for months, but it was just three days. I sadly don't have any recollection of Christmas, December, or most of January.

My Mom had to write up a medication schedule (I know I had pills to take, but couldn't remember when.) My stomach-upsetting Lamotrigine has been increased...

Yesterday, I had my skull staples removed.

Willing to answer any questions to the best I can!

The ESETT Trial: Kapur J et al. Randomized Trial of Three Anticonvulsant Medications for Status Epilepticus. NEJM 2019. PMID: 31774955

This was a randomized, double-blind, multicenter trial evaluating the superiority or inferiority of second line agents (levetiracetam, fosphenytoin, valproic acid) for status epilepticus.

Patient were included if they had been given benzodiazepines for seizures lasting > 5 minutes and continued to seize for 5-30 minutes after administration. Minimum adequate doses of benzos were considered to be:

• >= 32kg: lorazepam 4 mg IV, midazolam 10 mg IV/IM, diazepam 10 mg IV/IM
• < 32kg: lorazepam 0.1 mg/kg IV, midazolam 0.3 mg/kg IM or 0.2 mg/kg IV, diazepam 0.3 mg/kg IV/PR

Dosing of second line agents was per SE guidelines as follows:

• Levetiracetam 60 mg/kg (maximum 4,500 mg)
• Fosphenytoin 20 mgPE/kg (maximum 1,500 mgPE)
• Valproic Acid 40 mg/kg (maximum 3,000 mg)

Results (the trial was stopped due to futility as there was a <1% chance they could show superiority after enrolling 400 patients)

Primary Outcome:

• Absence of clinically evident seizures and improvement in level of consciousness by 60 minutes.

• Levetiracetam 47% (68/145), Fosphenytoin 45% (53/118), Valproic Acid 46% (56/121)

Secondary Outcomes (Safety and Efficacy):

• No statistically significant difference between any of the outcomes

• Numerically more deaths in the levetiracetam group but this was not statistically significant

Critique:

• Minimum adequate benzo dose is lower than recommended, generally should be repeated x1. Some of these patients may have stopped seizing with a second round of benzos.

• Fosphenytoin dose does have a max of 1,500 mg per the algorithm in 2016 Glauser, but some do not practice this as the max. That means patients > 75kg would have gotten a suboptimal dose.

• 27% of patients had study deviations but were kept in the intent to treat primary analysis.

• Only 87% of patients were actually diagnosed with status epilepticus (10% had non-epileptic psychogenic seizures), but were included in the analysis.

• According to study design, patients were seizing for ~1 hour prior to enrollment and then were watched for 60 minutes after administering the study drug. That is two hours of seizing and makes me question the neurological outcomes for these patients, which were not given.

• Similarly, the primary outcome was somewhat subjective and 60 minutes is longer than we would wait IRL.

Hi all,

In the continuing search for what the heck is going on with my body, I described my autonomic episodes to a friend, including that I become exhausted afterwards, immediately fall sleep for hours, and have a hangover the next day. She said it sounds like a seizure (her son has epilepsy).

A quick Google search turned up Panayiotopoulos Syndrome, which is generally seen in children. This if from https://pediatrics.aappublications.org/content/118/4/e1237. I've bolded my symptoms:

>Autonomic seizures in Panayiotopoulos syndrome consist of episodes of disturbed autonomic function with emesis [vomiting] as the predominant symptom. Other autonomic manifestations include pallor (or, less often, flushing or cyanosis), mydriasis [diluted pupils] (or, less often, miosis), cardiorespiratory and thermoregulatory alterations, incontinence of urine and/or feces, hypersalivation, and modifications of intestinal motility. In approximately one fifth of the seizures the child becomes unresponsive and flaccid (ictal syncope) before or often without convulsions. Cardiorespiratory arrest is exceptional. More-conventional seizure symptoms often appear after the onset of autonomic manifestations. The child, who was initially fully conscious, becomes confused and unresponsive. Eyes turn to one side or gaze widely open. Only half of the seizures end with brief hemiconvulsions or generalized convulsions. Convulsive status epilepticus is extremely rare. Autonomic symptoms may be the only features of the seizures. Half of the seizures in Panayiotopoulos syndrome last for >30 minutes, thus constituting autonomic status epilepticus, which is the more common nonconvulsive status epilepticus in normal children. Two thirds of seizures occur during sleep.

There's some support for these autonomic seizures in adulthood (https://www.epilepsybehavior.com/article/S1525-5050(12)00538-0/pdf).

I suppose I'm wondering if anyone else has experienced these symptoms and considered them a sort of seizure activity.

Thanks in advance for any input!

Hiya, kind of a repost but better worded this time (hopefully).

I'm looking for people who have similar experiences not advice - unless you want to give it, the more the merrier hey!

I am someone who is susceptible to a status (seizures that last for a while) and I am at risk every month and a half. Especially when alcohol is in the mix.

These are mainly a complex partial status and I am kinda scared for my future.

So is anyone else is susceptible to a status of any kind and what is your experience?