u/Adventurous-Bee46

My mom (early 70s) had a subdural hematoma/brain bleed from a fall late March and had been slowly recovering well. Over the past few weeks she started getting low-grade fevers at night, then last weekend I found her on the floor after what appeared to be a seizure.

At the hospital, EEG showed she was in status epilepticus (continuous seizure activity). She was intubated and heavily sedated for several days. Every time they tried lowering sedation, the seizures would return..MRI showed inflammation/fluid around the area of the old bleed with possible extension toward the arachnoid space.

Doctors ruled out a major new bleed/stroke and full body scans did not show obvious cancer. They are now investigating possible autoimmune/inflammatory causes and mentioned things like sarcoidosis and IgG4 disease. She’s currently on 1500 Keppra 2 times a day, 200 Vimpat 2 times a day, and 200mg Zonisamide.
As you can imagine, this is making my mom DROWSY AF. This past month she was only on Keppra and it was 500mg!!!

The good news is she has now been extubated, is eating/drinking a little, and has been seizure-free since 5/12 around 2am. Her repeat MRI also reportedly looks improved. She still has some slowed movements/stiffness.

QUESTIONS:
How do you get out of a seizure activity??

Can inflammation from an old bleed alone cause this?

Does this sound familiar to anyone with autoimmune conditions?

My mom is a female in her early 70s, approximately 5’2” and around 130 lbs. Recent non-smoker. No alcohol or drug use.

Timeline:
My mom had a subdural hematoma (brain bleed) back in late March and had been recovering since then. Recovery was slow at first but she had made HUGE improvements over the past month and we really thought we were finally moving forward.
Over the past few weeks, though, she started having low-grade fevers at night.

A few days ago, I found her on the floor after what appeared to be a seizure. She was breathing and blinking but unable to speak. We called 911 immediately. Initial CT scans reportedly looked stable without a large new bleed, and doctors felt it was more seizure-related than stroke-related.
After admission, EEG monitoring showed continuous seizure activity/status epilepticus. She was intubated and heavily sedated because every attempt to lower sedation caused seizure activity again (eye deviation/twitching episodes).

MRI now shows inflammation/fluid around the area of the old bleed. Doctors initially thought it was mostly subdural irritation, but now there may also be involvement extending closer into the arachnoid space. They are trying to determine whether this is irritation/scarring from healing, infection, inflammation, or something else triggering the seizures.

They completed a full body scan looking for possible causes like cancer or infection, and so far nothing major has been found. Labs overall have been fairly stable except for some earlier metabolic abnormalities and intermittent mild fevers.

Current status:
More awake now
Breathing on her own
Ventilator still in place currently
Seizures appear more controlled at the moment
Doctors are continuing to monitor brain inflammation and determine the cause

One complicating factor is that she recently had a cardiac angiogram and heart stent placed, so she is on blood thinners. Doctors want to investigate infection/cancer further (possibly spinal tap, etc.), but they are trying to figure out how to safely do that without fully stopping her blood thinner therapy.

I’m trying to understand if anyone has seen something similar after a subdural hematoma and what recovery/outcomes looked like. The sudden onset of status epilepticus weeks after the original bleed has been absolutely terrifying.