r/Encephalitis

Any recommendations appreciated. I need help. Last 16 months sleeping 0-3 broken sleep a night. No sleep drive at all. Cannot fall asleep for 1 second on own. Benzos only thing out of 30 drugs that can get me an hour but now they are useless. None of the z drugs or psych meds ever worked. Drs say I could have fatal insomnia. Petscan shows hypometabolism everywhere except the thalamus. Muscle spasms. Spinal tap showed elevated 14-3-3 protein levels. CBT-I did nothing. My heart rate is in 50-60’s its not anxiety related. The prior 12 months I had extremely high heart rate panic attacks; hospitalized many times with no answers. Been to various hospitals across country.

Any insight or suggestions on anything that could help is much appreciated.

My fiancee had enciphilites about 3 months ago. It was very severe but thankfully she made a nearly complete recovery. We think it was autoimmune as steroid treatment appeared to help. She's been tapering off Prednisone starting from 60mg to now where her last dose of 5mg was just over a week ago.

She has been experiencing quite a bit of fatigue and low mood. Mostly sleeping during the day and night and when she is awake she can be fine for a bit but teary and sad other times.

I'm wondering if anyone has had experience with this? Is this normal? The fatigue is concerning me a bit but I'm kind of powerless on what to do. Is this normal? Does this get better?

Any advice helps.

Since having LGI1 encephalitis, I’ve noticed that I react differently to jokes and teasing. Before the encephalitis, I never had this problem. Now for example if someone jokingly gives me a mean look, I can actually get angry, even though I know they’re just joking. It’s weird because I understand that it’s not serious but I still feel annoyed or angry in the moment. Has anyone else experienced something like this after LGI1 encephalitis? Especially increased irritability or stronger emotional reactions to things that didn’t bother you before?

Has anyone had onconeural antibodies or intracellular antigens like Ma2, GAD, or KLHL11? Did anyone have a chronic form? What was the treatment/ recovery like?

Idk know why I’m posting maybe for support or something. My sister was diagnosed with nmda encephalitis since last December she was in critical care for months but from what I’ve been reading it’s not always as severe. She’s finally off life support and in a rehabilitation center after months of fighting for her life, but will she ever be the same? She’s only 26 idk what I what to hear right now or anything I’m just an older sister who’s worried.

I don’t know why I’m posting, maybe I just need support right now but I feel so isolated and crazy and stupid for letting this happen to me even though I have no control over my illness. I thought I could be honest and ask for a work from home accommodation because of my seizures that have started (nothing that has disrupted my work, they are not observable unless someone is paying super close attention because they are focal). It has made it so I can’t drive.

But doing that opened up a can of worms because even though it’s something that could be allowed, now I’m being told they aren’t sure if I’m medically okay to do my job. My job is my health insurance. I can’t pay to see the neurologist which I desperately need to figure out what’s going on with me. I can’t get in any sooner than the appointment I have two months from now. I’m scared to go to sleep tonight because the last few nights I’ve become so terrified trying to go to sleep that my body starts shaking and I get myoclonic jerks and I get very hot/sweaty, heart racing and fearful.

I don’t know what I need I’m just scared.

​Hi everyone,

​I’m writing to this group because I really need to connect with people who understand what I’m going through, especially when it comes to post-encephalitis fatigue. It’s been almost 10 years since I had encephalitis, and to this day, I can’t remember the last time I woke up thinking, "Ah, what a great sleep, I finally feel rested!" ​I’m pretty sure a huge part of this is that I’ve become hyper-sensitive to almost any kind of stimulus. My brain just feels constantly overstimulated, and no matter how much I try to sleep, it never seems to be enough. Honestly, in nearly a decade, I can recall only one single week where I felt genuinely refreshed: I was on vacation, my mind was totally free from stress, and I was sleeping heavily both at night and in the afternoon. ​The afternoon naps are actually another weird change for me. Before the illness, if I slept during the day, I wouldn't be able to sleep at night. Now, taking an afternoon nap feels like a mandatory step just to get through the day. The problem is that even though it feels required, it still isn't a fix—I wake up and I’m still not properly restored. ​I’m just feeling a bit stuck and overwhelmed. Has anyone managed to find a way to deal with this constant sensory fatigue? Did you find any routine, pacing method, or trick that helped you get back even a fraction of your real energy, or is it more about accepting this as the new normal? I’d really love to hear your experiences or any advice you might have. Thank you so much for reading.

There are several antibodies that cause AE. Hers was Anti-NMDAR, I had a different antibody, but same outcome.

They think they know how mine was triggered.

I have Common Variable Immune Deficiency which means I went my entire life with 70-80% of my immune system missing.

I even managed 7 years in the Army coughing up blood from the chronic pneumonia and didnt die!

The chronic inflammation left made my blood brain barrier compromised and resulted in Autoimmune Encephalitis. And just like in the movie on Netflix Brain on Fire this caused: seizures, strokes, paralyisis, aggression, mania, and more.

But i wasnt saved as fast as her. It took years and all that saved me was they continued to do large bursts of steroids meaning i was in and out of these states of madness all 5 years.

Proof

I’m hoping someone here might have some insight because I feel like I’m going in circles with doctors.
My history:
2014 Back pain with right-sided sciatica. I also have spina bifida occulta.

2018 Got sick and developed chronic headaches afterward. Workup for tumors/etc. was negative and I was diagnosed with migraines.

2022 Diagnosed bipolar. This doesn’t really fit but was the best answer at the time.

2023 Developed severe GI problems and eventually couldn't keep food down. GI ordered a head CT just to be safe.

2024 CT showed Chiari malformation. I was having severe headaches, presumed gastroparesis, fine motor issues and occasional balance problems.

2025 Had Chiari decompression.

After surgery Developed right-sided weakness and seizure-like episodes that feel very temporal-lobe-like.

2026 Everything has become more frequent/debilitating. I've had 3 ER visits in 6 months and prolonged EEGs at two Level 4 epilepsy centers.

My episodes involve things like intense deja vue, a roller coaster feeling in my stomach, staring, and swallowing repetitively. I am aware through it all but cannot respond.

My 72-hour EEG didn't capture epileptiforms despite having an episode during it, but it did show left temporal focal slowing and quasi-rhythmic spikes. I've also had multiple regular brain MRIs and CT scans.

The part that really concerns me is that I'm not just having episodes, I feel like I'm progressively losing cognitive and physical abilities. My memory, motor skills, strength and sensory tolerance have gotten worse. I also have severe daily headaches, muscle tightness and weakness, extreme emotional outbursts although none of this FEELS psychiatric, and a deep internal restlessness that is extremely debilitating and doesn't improve with exercise.

Maybe not all the history I included is relevant. The back pain especially could be from my sports history. I don’t know. I just wanted to provide everything I could about my history. I am in so much pain and struggling.

My epileptologist is currently leaning toward FND/PNES because of the lack of definitive data and also partly due to my bipolar diagnosis. I know FND is real, but I'm struggling with this explanation because it feels like it’s being used as a “we don’t know what as wrong with you” diagnosis rather than actually evaluating for that or any other possibilities.

I'm exhausted and at a loss and I am losing hope every day. I desperately need someone to care and help. Any ideas or suggestions are appreciated.

For 10 months I experience every morning just after waking up jerks (hand, foot, neck, diaphragm) and intention.

Also major weight loss, left hand tremors when handling things, tinnitus, blue flash and vision acuity loss, urinary incontinence, unvolontary swallowing, night drolling, memory issues and sometimes confusion, ocd, dysautonomia.

Came after a,stressful period. I live in France and has eaten brain when I was a kid. Now 48F.

What else can it be than a prion disease?

2 MRI no contrast normal but at the beginning...

So afraid most of all for my family as transmissible.

Thks for ur help.

My child had blood tests on Friday to start investigation for NMDAR encephalitis. She has had major symptoms on and off for 3 years following a fall at school. She’s young and also has a reproductive malformation that’s linked to this condition.

I can’t get ED or our paediatrician to see it though. She isn’t deathly unwell yet. We presented to ED last week and got sent home, then saw our paediatrician who said get a blood test and if it’s positive, then we’ll get a lumbar puncture.

She’s got so many symptoms but could also do an amazing art work in the paediatricians waiting room, passed the basic neurologic screen in ED and the initial blood tests (just basic full blood exam and inflammatory makers) are absolutely perfect. The anti-NMDAR and anti-VGKC antibodies blood test will take 3 weeks for results.

I’m closely monitoring her for further deterioration and keeping track of her symptoms - she’s developed nausea, neck soreness, occasional confusion (she couldn’t name the states of our country/got very jumbled), irritability, fatigue etc, but it’s subtle. I can see it, but it’s easily dismissed by others.

What should I do? I’m willing to go back to ED and push harder for them to take this presentation seriously, but also strongly suspect we’ll just be dismissed and discharged. We have been keeping the paediatricians rooms up to date and asked them to please consider getting the lumbar puncture earlier, but it involves admission to the tertiary hospital and I suspect there may be some underlying politics/paediatrician doesn’t want to action it without solid evidence from the blood tests/doesn’t believe us.

Does anyone here have any suggestions? We’ve ridden out acute stages of this condition before, not knowing what it was. I’m weighing up going back to ED and just trying again.

Hello, I’m a close family member of a of someone who has had encephalitis twice (which I’ve been told is incredibly rare) and honestly I’m so worried it’ll happen again. It has been inconclusive whether or not it is autoimmune or viral, but most likely viral.

Anyways, both instances of the encephalitis were so different and I’m curious as to other people’s symptoms leading up to hospitalization. I don’t live with them so it’s hard for me to see day to day things but I’d like to know if there were any weird things you noticed, no matter how “insignificant”. I’m totally paranoid now.

Hi everyone. My family is going through a very difficult situation, and I wanted to ask whether anyone here has ever seen or experienced something similar.

My sister-in-law has had lupus for several years. Her disease had been in remission for some time, but since December of last year it became active again. It started with severe pain in her hands and joints, to the point where she could barely move them. Over time, the pain and loss of mobility spread to the rest of her body, knees, hips, jaw, shoulders, and other areas.

After about five months of this, she was practically bedridden. She could no longer do things on her own or even stand up without help.

Then, over the past month, she started having episodes of memory loss and saying things that did not make sense. One day, she spent almost the entire day sleeping, and whenever she woke up she was extremely confused and could barely respond to us. We immediately took her to the hospital. She arrived there asleep and remained that way.

She was urgently transferred to the ICU and was intubated that same day. They performed several tests, including a lumbar puncture/spinal fluid analysis, MRI, and CT scans. They found multiple areas of inflammation in her brain, and her condition was considered extremely serious.

Even now, the doctors have not been able to say with complete certainty that this was caused exclusively by lupus, but they are treating it as lupus-related inflammation of the brain. She has received rituximab and high-dose corticosteroid pulse therapy, among other treatments. I unfortunately cannot provide many more details because I do not fully understand all of the medical terminology or medications they have used.

Today marks one month since this started. She has already left the ICU, and the doctors are considering discharging her from the hospital because of the risk of hospital-acquired infections. However, neurologically, she is still essentially unresponsive.

She does not speak and sleeps most of the time. Sometimes she opens her eyes and stares into space. At other times, it really seems like she can hear us, her gaze becomes fixed, as if she is paying attention to what we are saying. Sometimes it even looks like she is trying to communicate; her mouth trembles or moves slightly, but she cannot speak or move her body. She only makes very small movements with her hands and feet.

Has anyone here ever gone through something like this, or seen a case this severe involving lupus, encephalitis, or neuropsychiatric lupus?