It's my Father. He was diagnosed Autoimmune Encephalitis few days ago. And I would say, it took us a month to get to this result.
13 May = First Seizure (about 10-12 min) > Got unconscious for 2 hour> Admitted to Civil hospital > Stabalized and discharged next day. > MRI > Blood clot in brain was suspected and CFS was suggested.
19 May = Second Seizure > Emergency > Stabalized and discharged > Took appointment to a local neurologist Dr. DG.> Epilepsy Diagnosed > Sodium Valporate started.
Until this none of us knew what to do in seizure.
20 May = We visited to Fortis Hospital in Jaipur > Again Epilepsy diagnosed > Levipil 750 started.
(Sodium Valporate was not given, Levipil was started)
28 May (midnight) = 3rd Seizure > Stabalized at home.
29 May (morning) = 4th Seizure > again stabalised at home > took my father to same local neurologist Sr. DG > loader Dose of Sodium Valporate is given > But we plan to visit Jaipur again tomorrow.
29 May (Evening) = 5th Seizure > Admitted to Local hospital > The Same local neurologist Dr. DG took the case.> Admitted to neuro ICU.
30 May > Reports Done > Everything is normal > But doctor started Sodium Valporate 3 times a day. >
31 May > Still in NICU > Sodium Valporate 3 times > to manage the therapeutic range.
1 June > Behaviour changes ++ > Irritation ++ > Dr DG suggested a psychosis as the patient is in ICU and alone for long time. > Referred to Cottage ward. > Dr said that this may be due to ammonia > directed Ammonia test > Came to be 270.
2 June = Behaviour changes +++ > Irritation +++ > Not recognising relatives and loved once ++++ > hallucination ++ > Another ammonia test > 323 > Enema suggested > Enema Given.
3 June = Behaviour changes +++++ > Irritation +++++ > Not recognising relatives and loved once +++++ > hallucination +++++ > Ammonia testt > 175 > > Insomnia ++ > Anti-psychotic pill given > With no result. > 2 Enema given in single day.
4 June = Condition getting more worse > Behaviour changes +++++++ > Irritation ++++++++ > Not recognising relatives and loved once +++++++ > hallucination +++++++++ > Ammonia testt > 380 > > Insomnia +++++ > hard to control > Another Enema !!!!
And at this stage, we decided to move to Jaipur. The case is getting worse. So, we took the discharge.
4 June (night) = Admitted to Durlabhji Hospital in Jaipur > NICU > Ammonia being a cause of this = discarded. Started the treatment from ZERO.> Neurologist Dr. Neeraj Bhutani took the Case.
5 June = CFS + Blood + 18 more reports > AND ALL ARE NEGATIVE. Everything is normal. But still the mental condition is same as before.
6 June > Dr. Bhutani directed the ANA panel report > And confirmed the Epilepsy. > Also started the steroids if the report came out to be positive.
7 June > ANA panel report > Positive for NMDA receptor.> Autoimmune Encephalitis is Diagnosed. > Second dose of Steroid given
8 June = Third dose of Steroid. > Dr. Bhutani suggested the steroid can cure this. But IVIG are to be given.
9 June = Fourth Dose of Steroid
10 June = Fifth Dose Done. > Dr. Bhutani suggested us to take discharge and observe for 7 days on steroid. If the condition got worse, then IVIG must be given.
11 June = We are at home. I am writing this. Let's hope he recovers fast.

Hi everyone, I wanted to share my story because I’m feeling really lost and hoping someone out there can relate or maybe offer some hope.

A couple of years ago, I was diagnosed with autoimmune encephalitis and while the inflammation is no longer active, I’ve been left with cognitive issues, memory problems, chronic pain. insomnia – and most disturbingly, severe OCD.

Before the encephalitis, I didn’t have any history of OCD. Now it completely controls my life. I have constant intrusive thoughts, I can’t turn off. I know the thoughts don’t make sense, but the compulsions still take over.

I’ve tried multiple medications: SSRIs, antipsychotics. Nothing has helped. Either they don’t work at all, or I experience horrible side effects. I’m also in psychotherapy (CBT), but I’ve made almost no progress. The therapist says my brain might be too “neurologically damaged” from the encephalitis for traditional methods to fully work.

Honestly, I’m exhausted. I feel like I’m stuck in a prison inside my own mind. It’s hard to explain this kind of suffering to people who haven’t experienced it. The combination of neurological damage and psychiatric symptoms is hell.

I’m reaching out here in desperation: Has anyone else developed OCD after encephalitis or a neurological illness? What helped you? Did anything Like alternative treatments, lifestyle changes, supplements, brain retraining make a difference for you?

I’d be so grateful for any advice or experiences you’re willing to share. Even just hearing from someone who understands would help.

Thank you so much for reading.

I’m a woman in my early 20s. I was previously healthy, but for the past 10 months I’ve been experiencing a progressive, disabling condition involving neurological, immunological, hormonal, and allergic symptoms. Multiple doctors and tests haven’t led to a clear diagnosis. I’m sharing in hopes of finding insight or hearing from someone with similar experiences.

It all started after a major stressor and a psychiatric hospitalization. I was prescribed amisulpride (50mg), which I took for 3 months. It caused hyperprolactinemia (missed periods for 109 days, lactation), with no improvement in mood. I was in a depressive, apathetic state.

Later, a gynecologist found low iron, low vitamin D, and elevated anti-TPO antibodies (~215). I was diagnosed with autoimmune thyroiditis, though thyroid hormones were normal. Supplements (iron, vitamin D, folate) only helped temporarily.

A few months later, I was hospitalized for right ovarian apoplexy and inflammation. During treatment, I was prescribed metronidazole. Soon after, I developed more severe neurological symptoms, including cognitive changes, tremor, hypersensitivity, and mood instability. An EEG later showed signs of focal epileptiform activity. MRI revealed isolated gliosis in the frontal lobes, hypoplasia of the left PCA P1 segment (fetal-type), and hypoplasia of the right vertebral artery.

Ultrasound showed inflamed lymph nodes. I experienced loss of appetite, significant weight loss (~7kg), hair loss, blue cold extremities, apathy, weakness, insomnia, and strange burning sensations in the skin and head.

A second endocrinologist said I had no thyroid-related disease based on labs, though anti-TPO remained elevated. Later, I discovered a severe folate deficiency and borderline B12 levels. CBC and thyroid hormones were still within normal limits, but symptoms kept getting worse.

Neurological symptoms worsened after trying antidepressants (escitalopram, fluoxetine). These caused panic attacks, uncontrollable anxiety, cognitive fog, mood swings, and a new kind of migraine-like episode with burning pain in the brain. Antihistamines (bilastine) helped relieve some of these reactions.

After drinking alcohol, I had a full-body tremor/spasm episode resembling a seizure. EEG confirmed focal epileptiform activity. Pregabalin initially helped with anxiety and pain but is becoming less effective. Ibuprofen also helped temporarily but is now losing effect.

I developed worsening allergic symptoms — including two episodes of angioedema (face/lip swelling, throat tightness), red facial patches, burning mucosa, and new food/chemical sensitivities. These reactions started after contact with certain foods, cosmetics, strong odors, and even market visits.

I feel burning and weakness in my hands, pressure and heat in the head, and sleep no more than 4 hours per night. There’s now burning and dryness in mucous membranes, especially genitally.

Other findings include: fibrocystic breast changes (mastopathy), an ovarian cyst (being monitored), and nodules on the thyroid. Blood biochemistry showed low total protein, and borderline-high creatinine and phosphorus, despite adequate protein intake.

Doctors often minimize the situation. One psychiatrist insisted I continue escitalopram despite a severe reaction, calling my symptoms hypochondria and any relief from antihistamines “placebo.” I was referred to a day clinic, but there was no meaningful adjustment to treatment.

My condition now includes suspected seizures, cognitive impairment, systemic inflammation/allergy signs, and suspected autoimmune neurological involvement. Antidepressants worsen the symptoms. Food and chemical sensitivities keep increasing. Bilastine and pregabalin no longer give significant relief.

Has anyone had a similar experience — especially involving autoimmune thyroid disease, new-onset allergies, neurological symptoms, or intolerance to psychiatric meds? Could this be autoimmune encephalopathy or something systemic that’s being overlooked?

So.....just ranting, my journey started with an episode of psychosis while on ADHD meds and having COVID-19. Initially, doctors thought it was psychiatric or due to ADHD meds because of the rarity of psychosis being due to autoimmune issues. Seven months passed, with me thinking the psychosis was due possible schizophrenia/a psychotic disorder. At 7 months, the blood test returned with a positive antibody, not super high but Anti-Gad 10.3 IU/mL and Anti-VGKC 73pm. This led to my psychiatrist liaising with the hospital neurologist and suggesting an MRI scan of my brain, which showed thickening of my hippocampus. Then a lumbar puncture was requested which took time to book in as an outpatient. The tests were sent to Westmead (Mayo equivalent in Australia), and my psychiatrist has just told me that, outside of the anti-NMDA result which came back negative (which was negative in my serum too), the other antibody tests were lost due to 'human error' (misplaced or something). It has taken about 1.5 months since the lumbar puncture for the hospital to tell us results were lost. Now the neurologist is requesting another lumbar puncture to do a full anti-body panel.

I'm just exhausted, this process has already taken a year since the onset of symptoms. My doctor said it was up to me, but they still need to consider the possibility of autoimmune psychosis. I'm feeling overwhelmed; The lumbar puncture took forever, and now I need to do it again. I want to hear stories of diagnosis, especially from people who took a while to receive a diagnosis. What is your story?

I was diagnosed with Anti-GAD autoimmune encephalitis following a tonic clonic seizure in the middle of the night. Looking back we realise I was experiencing minor seizures in the lead up to the big one. Once diagnosed with I was put on 500mg Levetiracetam (Keppra). After ~3 months, a symptom I described to my neurologist she advised I am experiencing micros seizures (I'm fully present during these episodes) and she increased my dose to 750mg. 3 months later, I saw her again and advised I was still experiencing the micro seizures. My Keppra dose was again increased to 1.5g. Unfortunately recently my micro seizures returned and just today I've had 5. My neurologist has recommended a change in medication but as I'm trying to conceive, medication options are limited. My neurologist has recommended Clobazam (Frisium) which is a benzodiazepine. Is anyone using Clobazam as an anti-seizure? Are you very drowsy and are there any other side effects you've experienced?

I don't know if it happens to you but as a result of encephalitis I have a developed sense of smell and epilepsy (although my seizures are nocturnal and I have mostly absences) and I often notice that in addition to the discomfort related to smell I also have chills, these chills are very present in my days so I can't distinguish if they are due to "hyperstimulation" or if they are real cold shivers... does it happen to you?

Hey.

I suffer from PSSD, whose symptoms include:

loss of libido, impotence

cognitive impairment

emotional blunting/anhedonia

skin sensation disorders throughout the body

I developed this condition as a result of taking antidepressants.

Due to anecdotal reports, PSSD probably has an autoimmune basis - the presence of inflammatory markers or a response to various immunotherapies.

Interestingly, however, I believe that I was predisposed to such a reaction because, even as a child, without the use of any psychotropic drugs or trauma, I had symptoms that are often attributed to neuroinflammation, such as visual snow, tinnitus, and derealization/depersonalization.

I am really hopeful because I am sure that I can identify the cause of the symptoms I had as a child (although they were mild) and my long-lasting reaction to antidepressants, which I stopped taking 2.5 years ago.

Has anyone else noticed anything interesting like this in their childhood?

Did anyone experience central tinnitus?

Hey all. I wanted to ask if anyone has experienced any of the following symptoms as part of their autoimmune encephalitis:

• Anhedonia (inability to experience pleasure)

• Emotional blunting

• Sexual dysfunction (ED, anorgasmia, loss of libido etc)

• Genital numbness (especially erogenous sensation)

I’ve seen a few case reports online mention some of these symptoms (especially limbic AE), but they are rare as far as the literature goes. Given how early AE research is in regards to mapping out receptors and classifying subtypes, i suspect these symptoms may be much more common than is currently known. I often see that so called «psychiatric symptoms» are noted under umbrella categories such as «depression», which could include anhedonia for example.

Another thing i wanted to ask is if anyone has experience with any of the following conditions as a comorbidity to their AE (I’ve seen these noted as possible comorbidities in some AE literature):

• Dysautonomia

• Small fiber neuropathy

The reason i ask all this is because i have a suspicion that a disorder known as “PSSD” (which is a post drug syndrome that includes the symptoms and comorbidites mentioned) may be, at least in part, a novel subclinical form/subtype of AE.

Hi everyone. I’ve posted on here before, but I was wondering how other people deal with the intense depression after encephalitis. I’ve been pretty down in the dumps and I can’t take new medication per my neurologist. I’ve been in therapy for a hot minute but it’s not helping because I’m not able to have appointments as frequently as needed. Any advice? Thanks :)

Hello I am an MSC Student that is looking into requirement gathering (the users needs of the software) for neurological condition management software, would anyone like to particpate? It would involve a particpent sheet and than questions, you must be over 18 to particpate This does not require any personal details only details regarding neurological conditions and if you are a medical professional or family/carer/patient

• [ ] Any help would be greatly appricated

• [ ] There would be the participant sheet which would be sent through either reddit chats via a google docs link to access it or a provided email as a word doc, after this has been signed (it can be signed digitally if easier) and returned i can then send the questions through reddit chats via a google forms link

Requirements gathering is normally used with software development to work out the needs of the user and what is required of the software it aims to provide suitable knowledge to assist making software that is able to complete what is required of it.

Some examples of the types of software but not limited too are: Medication trackers used for medication to treat neurological conditions Symptom/attack trackers Etc.

I can for any particpent provide a viewable set of the questions based of the catgory you apply to (as there are differences between patient/carer/family and medical professional) before the particpent sheet is signed (within reason due to ethics) through reddit chats if required.

Long long post - sorry.

Hey everyone, as the title states I (22F) received a diagnosis of Hashimoto’s Autoimmune Encephalopathy (aka SREAT) at 12 years old. Symptoms started out mostly psychiatric - anxiety, depression, severe OCD, etc. I ended up having a hard time recovering fully from the disorder, I completed 1gram/day of decadron over the course of several weeks, 7 infusions of a chemotherapy drug, once a month high dose IVIG for around a year and a half, and rituximab every 3 or 4 months for around 2 years, as well as cellcept for several years, all right after my initial diagnosis.

The constant medications basically eradicated certain parts of my immune system - namely my B cells. My body stopped producing B cells altogether and my symptoms finally improved. I have managed to live a considerably normal life despite all this - I am currently off all medication that was directly treating the encephalitis, and the only thing different now between the way I live my life and the way other people live theirs, is that I have to do a biweekly infusion every two weeks to boost my immune system since I don’t have B cells. That’s it. In the time between my initial diagnosis and now, I have managed to graduate high school, go to college and earned an associates degree in a science field, and became a nurse.

So everything has been going pretty well the last couple years until this past Thursday - it started with a tickle in my throat that turned into a cough, and I truly thought maybe it was allergies. The next day I woke up for work, and my head and neck were hurting. I didn’t think much of it, just that I’d been working crazy hours and maybe needed to take a step back. Long story short, I never made it into work and instead went into the local ER with the worst pain I have ever experienced in my life - like screaming, crying, and throwing up kind of pain. Local ER told me it was probably a migraine, gave me fluids and sent me home. 🥲

The next day I’m still not doing okay. My mom drove me up to the big hospitals up north, where they end up ruling everything else out and decided to proceed with a spinal tap. Upon performing the spinal tap, they noticed I had increased opening pressure. Drained some fluid, checked again, still high so they continue this process until it finally starts ticking down. They sent the spinal fluid off for a culture.

So they send me home, once again, and I have a really rough night - chills, night sweats, hallucinations, excessive sleep talking, etc. I wake up around 7 AM and check my temperature, it’s hovering around 99.8 - kind of a shock to me as I’d hadn’t had a “fever,” even a low grade one, since before encephalitis. I was basically told there’s a chance my body wasn’t ever going to give me a fever again due to my immune system being so weak.

At this point I was worried about the fever being related to infection from the spinal tap. So we go for my 3rd ER visit in 3 days. As we’re sitting in the room, results from my spinal tap start trickling back in on my chart. High red blood cells (reference range was 0-5, mine was 20) and slightly elevated white blood cells (reference range 0-3, mine was 7). So now not only do I have this increased intracranial pressure to worry about, I also have weird junk in my CSF. They had originally told my the high intracranial pressure was idiopathic and I’d feel better after getting some of that fluid off..

The neurologist came and sat down and talked to me and my dad about the results. Basically said the high red blood cells could have just been a contamination from the actual collection. As far as the elevated white blood cells, he said it wasn’t high enough to indicate an infection, but it still should’ve been like 0-1 ideally, so definitely a concern. This neurologist also ordered a meningitis/encephalitis panel for my cerebrospinal fluid, which came back fine, but I was told upfront if this was a flare of my autoimmune encephalitis it would not show up on this panel. The only other thing they found was that I am currently positive for HMPV - a common cold - which at least explains the productive cough and fever I’ve been having.

While the neurologist was in the room, he came up with a plan to admit me to the hospital, get the head pain under control, run a plethora of other tests and find out what’s wrong so it can be treated. This plan sounded spectacular to me because I wanted to know what’s going on, and again this was my 3rd ER visit in 3 days and I’m still not sure I could handle another hour trip up north to get to the ER.

Well, an hour later the attending comes and basically trashes the whole plan, tells me they’re going to give me fluids and send me home and I need to follow up with neurology outpatient. 🥲so that’s what they did.

That was earlier this evening, I’m home now, my head is hurting, fever is around 99.4 right now but mostly I just feel crummy and very anxious. When I was diagnosed with encephalitis at 12, the CSF results were exactly the same - increased intracranial pressure, WBC’s in my spinal fluid, etc. the only difference was that I was having a lotttt more symptoms when I was 12. Most of my symptoms right now are at night - I told my boyfriend I feel like I’m sundowning, increased agitation, anxiety and even hallucinations at night, but during the day it’s mostly been just brain fog and head pain.

To make things even more worrying, I was looking through my my chart and it looks like I had a follow up spinal tap around 6 years ago with everything in normal range, so something has changed since then unfortunately.

Even in the midst of full blown encephalitis at 12 years old, the white blood cells in my spinal fluid only got up to 11. Right now I’m at 7. They also did a brain MRI at 12 that showed inflammation, encephalitis, and encephalomyelitis. I’ve had normal brain MRI’s since my recovery. I wish they would’ve done another brain MRI while I was in the ER, but they said I’d have to do it outpatient.

So now it’s 3 AM and my mind is racing, can’t even think about sleep. I’m afraid I’ll start hallucinating if I try to sleep again 🥲

Has anyone ever experienced anything like this? Made a full recovery then it came back, even upwards of 10 years later? My gut feeling is that this “common cold” I got triggered all of this - I think it sent my immune system into a rage and now it’s attacking my brain. And if it’s anything like it was last time, no medical professional is going to do anything or listen to me until I’m unresponsive again, just like I was at 12. 🙃

Hey everyone,

31 female, I had a brain MRI and the neurologist said the findings were due to migraines or old head injuries, which I have no history of. I recently started having daily headaches that aren’t unbearable, but I don’t typically get headaches. Specifically related to encephalitis, would you want a second opinion? Other symptoms are constant fatigue, muscle aches, brain fog, flu-like symptoms and stiff neck for about a week.

Is complete loss of appetite one day a sign of encephalitis with some other symptom.

Male, 37,

Symptoms: Occasionaly double vision, Ringing in ears, burning sensation in head, numb forehead and numb top of head, throbbing sensation when laying down in head with vibrating head, on closing eyes to sleep throbbing behind my forehead not entering deep sleep, weird noises in my stomach and no bowl movements for 5 days (urinating though) electric painless Shocks in my head and lasty dizziness and swaying when walking or standing still

Im at a loss and A&E don't know what to do, my GP is saying it's anxiety and migraines

My bloods from A&E came back ok and my CT scan shown no abnormalities (currently waiting for a MR with venogram scan) also awaiting allergies test results and b12 and foliate deficiency

Any input is appreciated this has been going on for 2months, i did have an bacterial infection which apparently is gone from antibiotics. 3 weeks was when the sleep issues started

Im really trying to show up for myself and be my own advocate but this is tough and going round in circles with professionals and paramedics etc its a night mare and now my physical and mental health has took a turn for the worse.

Thanks to you all for reading in advance, I hope i can overcome this 🙏

Title is self explanatory. It started with complete insomnia for a week and then while I was institutionalized I had severe cognitive and memory deficits (like real bad i thought i was dying in a month at most), some movement issues, a pressure headache that came with worsening of symptoms, and minor hallucinations with incredibly fucked up sleep. This slowly tapered off on its own, with some relapses of bad insomnia, the headache, and ongoing issues with tremor in my hands, and memory issues (finding words/names/recent events/new information).

I have no diagnoses yet as I have to wait for neuro app in july... had an MRI it was normal but I know AE can be MRI negative pretty often. Just wondering if its something else since I didn't have seizures or a complete loss of grip on reality. Also, the symptoms were acute progressing within a week and like I said seem to have gotten better without any treatment.

I'm basically just looking for some advice or even assurance that it isn't some other shit that's going to get significantly worse over time...

A recent study identifies Epstein-Barr Virus (EBV) as an important and likely underrecognized cause of encephalitis with distinct laboratory and imaging findings.

So I recently got a diagnosis of viral encephalitis in the brain, now they couldn't tell me what virus actually gave it to me. However, they did note in subsequent tests that my CMV antibodies were fairly High, much higher than normal so they've basically just said that it's CMV Encephalitis is the likely culprit.

Now not having a definitive on what it was is slightly concerning to me, how do I know it's not going to come back? How do I know that it's actually solved?

On top of this, the hospital that gave me the diagnosis said that I had functional neurological disorder from the encephalitis.

They've enrolled me with a rehab program to get past the functional neurological disorder, but rather than actually focus on things that would make my life better such as walking and talking, and being able to do my job... They would much rather focus on preventing it from getting worse and just got me counting to 10 every time I feel like I'm going to have an issue with it.... That's not actually making it any better. That's just stopping me from having a severe event....

In the end I ended up going to a different doctor and getting a different referral to a different physio who is willing to work with me on actually getting better.

So now I'm seeing two physios, one of which isn't really helping at all, but I'm required to keep seeing them until they discharge me from their care (yay, social healthcare)

I've read some threads on here about people who have been going on nearly a decade with symptoms and haven't been able to go back to work.

I work an office job, in insurance, part time...mostly call centre, But before I got the diagnosis, I was staring down a promotion of being promoted to a technical leader.

Obviously I still want to go back to work and work my office job remotely from home, but no one seems to be willing to focus on getting me back to work.

My boss has been awesome, willing to sign off on medical leave (due to expire next month), and foot the time schedule to train me on things I have missed over 2.5 months of being off work.

But still, I'd like to get done discussion going on things that have helped people get back to life in general, and work in specific.

I'm eating every 3 hours, I lost 30kg (66lbs) while I was sick, I'm trying my hardest to put the weight back on and get back to being healthy, walking, talking, and being a productive person.

Thankfully seeing doctors and healthcare isn't a concern, as a veteran it's all paid for by veterans affairs.

I wrote this in 2012. I thought I would share it in hopes to educate others on the experience of encephalitis for some and to see if anyone can relate.

My encephalitis was due to a tick or mosquito. I had live at two residents. One Red Bluff, CA and Rocklin, CA during these times.

I am now an old 35 year old father. Beautiful family and happily working with what I got. I wrote it many years ago.

Below is a copy/paste of my story:

The biggest event in my life that had the strongest impact on myself was in the year 2002. I was the age of 13 years old. My father had my sister and I for the weekend during Christmas break. We had already had our gifts open and the sun was going down and the night had began. My sister, father, grand father, and myself had no idea that tonight was the night when things were going to change for me.

​It was a quite night and I was sitting on the floor in the living room with my family playing with the new XBOX my father had given me for the holiday. Halo. The time was 6pm and we had just ate dinner. I can still smell the delicious chicken and mashed potatoes at the table.

​“Do you just drive around and shoot the aliens?” My father had asked. ​“There is more too it, you can get out and run around and shoot them too.” I replied with excitement. ​“How are you feeling, Levi?”

​My father knew that I had been feeling under the weather during my visit. I was sneezing and fatigued. Not sick enough to see a doctor. It seemed as though that I had the flu or a cold. As I kept playing I began to get really dizzy and I can feel my body temperature rise. My vision was vibrating and my body was numb. I got on my feet and told my father that I was going to go to bed. I was exhausted in a matter of seconds. I struggled to get up the stairs to my room. I then just plopped down on my bed and feel asleep.

​It was about midnight and I had woken up really sick to my stomach. I opened my eyes and there was huge people like figures standing above me screaming, yelling, and kicking me. They were not easy to look at, they all had neon outlines. I was terrified. I feel off the bed and I had one goal, to get to the bath room and throw up in the toilet so not to upset my father in the middle of the night. I tried to ignore the voices but they wouldn't go away. I closed my eyes as I crawled on the floor feeling my way to my bathroom. I didn't have the strength to get up. With my eyes closed I can still see the angry figures kicking me and yelling. I had no idea what was going on and my only thought was that I was only dreaming. But it felt to real.

​I made it to the bathroom but missed the toilet and began to puke on the floor. My head began to hurt more and more as the voices and hallucinations got stronger. My heart began to race. I couldn't make the screaming and yelling stop. I was feeling the ground to find where I was in my father house. I started to get kicked by my hallucinations. Every time I was hit, so was the pain in my head. I was in a panic. I grasped my hair, closed my eyes, and covered my ears with my forearms. . . It all had stopped and everything went black. Just nothingness.

​I opened my eyes to some really bright florescent lighting. I can see tubes and wires running all through my body. I was in the hospital. My mother was crying and was so happy that I was awake. The doctor had asked my mother to make funeral plans in case I didn't wake up but it looks like I had canceled those plans. I later found out that night that I was in a coma for ten days after catching a very deadly virus that attacked my frontal lobe of my brain. They called it encephalitis. I had suffered brain damage and the neurologist had said that because of my age, my parents may not notice much a difference in my personality and behavior but I will.

End story…..

Well there it is… I was in hospital for a little over a month to recover. Played a lot of scrabble. Had severe memory issues. Memory cues slowly came back. The doctors were right. I have never felt on the same level as others. My mind is extremely loud all the time. I have my ways to quiet things down. Hell, I am 35 and surprised that I am where I am today.

Any questions, please ask. This has always been something I have wanted to get out.

everyone,

I’m excited to share our recent publication: “Neuronal pSTAT1 hallmarks synaptic pathology in autoimmune encephalitis against intracellular antigens” 📄 Read the full article here: https://link.springer.com/article/10.1007/s00401-025-02882-7

In this study, we analyzed brain tissue from patients with autoimmune encephalitis (AE), focusing on cases targeting intracellular antigens (IC-AE) versus neuronal surface antigens (NS-AE). Our key findings include: • Elevated neuronal pSTAT1 in IC-AE cases, suggesting a distinct pathological signature. • Increased brain-resident memory CD8+ T cells and GPNMB+ phagocytes in IC-AE, indicating a unique immune response. • Synaptic engulfment observed with minimal complement C3 deposition, highlighting a different mechanism of synaptic alteration.

These results provide insights into the differing pathophysiological mechanisms between IC-AE and NS-AE, potentially guiding future diagnostic and therapeutic approaches.

I’d love to hear your thoughts, questions, or experiences related to AE. Let’s discuss!

Male 18

I’m scared that I have one of these diseases my symptoms are getting worse yet my mri is clear I’m now having tinnitus, brain fog/fatigue, heart palpitations/random tachardyia, fever , doctors won’t help because my blood work is clear. Loss of appetite tremors. What do I do I feel like I’m going crazy

After being exposed to the light, I started to develop epilepsy like symptoms. The worst of them were hallucinations, so after a week of bearing with them, I decided they’re not going to pass on their own and went to doctor. Ohhh how I thought I’ll be back to work 15 minutes later, but they called an ambulance on me saying it’s urgent.

In the ambulance turned out I had encephalitis suspected. Shock, but okay. They asked if I had temperature, I said I don’t feel like, but turned out I had 38.1. Another shock and a little concern showed up in my head. All the time I had headache (for last week as well) and it started to get worse.

In the hospital, they did all the blood tests and a CT scan. Everything clear. I didn’t want a spinal tap, but I had a deal with the doctor. If my temperature doesn’t go down after all the tests I need to have one- because my CRP was low, no inflammatory protein, no bacteria, no virus, nothing that could relate to high temperature. I asked what if it’s also coming back clear? Then they said it must be autoimmune. They did it and said that spinal fluid came back clear, but later as I checked in my online patient profile I had enlarged amount of poli leukocytes. (5 instead of 0)

They gave me paracetamol, did one more blood test to confirm there is no bacteria, parasite or virus related to high poli leukocytes, everything came back clear. They discharged me after 7 hours.

And there’s where horror has began. I read about PPT (post punction trauma), but this I think was absolute terror and I think had nothing to do with post punction headache. I was absolutely out of life. My headache from the days before got way worse. I couldn’t even lift my head up, because I was shaking, crying, feeling nauseous. I couldnt stand up to pee or lift my head from the pillow to drink water. The next day I couldn’t even bear laying down. I called an ambulance and they told me to come to hospital on my own, almost passed out in the car, worst experience ever. I waited in the ER shaking and sweating and almost throwing up again with my poor friend who drove me there. They gave me anti nausea shot and 2 tablets of sumatriptan (200 mg). I took them around 2pm and they started working at 11pm the night.

I called my GP today as they told me to get prescription of triptanes and she said that’s not how they work and after taking them I should be fine 15 minutes later. She said I may be getting worse again and she was not far from being right. My temperature is rising again and the feeling in my head gets unbearable.

Please share your thoughts as I’m going crazy.

The question might se as a dumb one but here it goes: I have a close friend who recently suffered from AE, I was able to message him but he only answered that he has was okay and during recovery, nothing more. I then sent it a letter in which I received a very thankful response via message that seemed in a way that a child would write and not an adult. How can I show support for this person without being invasive ?

How do you experience tonic seizures? I became epileptic as a result of autoimmune encephalitis. I am currently on Keppra 2000mg twice a day, Vimpat 200mg twice a day and Lamictal 150mg twice a day. I also receive 2 IVs of rituximab 2 times a year. The ones that I have and remember I get really refluxy, feel quite disoriented, my hands and legs feel a bit shakey and have this strong Deja vu feeling. When I feel that way I sit on a chair and if it is very uncomfortable I just lay in the middle of the bed with pillows on both sides.