Seizures are fascinating intellectually, but they can be devastating for the person suffering from them. We have all heard stories of young people who seemingly have no genetic or other past medical history and present to the Neurological ICU in status epilepticus -- an entity known as NORSE. All our algorithms fail and we are left scrambling for effective approaches without any evidence. Often, despite our best interventions, these young healthy patients have >35% mortality rate. And those that survive rarely make it past the SNF.
We have one such patient in our Neurological ICU currently. So I wanted to ask what you guys do when the standard treatments have failed? Per the American Epilepsy Society guidelines, we initially treated her status with Ativan, Midazolam, Keppra loads, Vimpat loads, Fosphenytoin loads, Versed drips, and finally Pentobarbital coma. Currently she is on Keppra, Vimpat, Fosphenytoin, Felbamate, Epidiolex, and Fycompa. Thankfully the Pentobarbital is now off, but she continues to require continuous Versed drip.
In your experience, have you found anything effective in these situations?
Amit Chaudhari last resort: pentobarbital and thiopental sodium. Unfortunately, majority of the physicians carry out the same management as you mentioned.
I think you could try high dose steroid treatment as adyuvant, so an inmune-mediated epilepsy can debut as a NORSE. And if there is no response I would try intravenous immunoglobulines.
https://pubmed.ncbi.nlm.nih.gov/30482654/
I agree that since the options available in guideline have been exhausted, it may be appropriate to explore the use of high dose steroid - dexamethasone or methyl prednisolone.
We are dealing with a Super-refractory SE case...
Yes, IV MPS and IVIG may prove beneficial in NORSE... otherwise Isoflurane, Ketamine, Magsulf, Ketogenic diet, and Cenobamate are other drugs to be tried
High dose diazepam preferably by Roche at 5-10mg/kg infusion over 30 minutes helps terminate refractory status epilepticus from my own experience. Electrolyte abnormalities must also be corrected.