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Encephalitis International

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Robbie

Encephalitis Sept 2022. Hospital for four months and friends notified that I would not survive. Horrible details but fortunately I remember nothing. All has...

Encephalitis Sept 2022. Hospital for four months and friends notified that I wo...

•16 hours ago

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My Brain & Medicine 2025 | Encephalitis International

My Brain & Medicine 2025 – Registration is now open (virtual event) Join us online for a patient event where we will be joined...

My Brain & Medicine 2025 – Registration is now open (virtual event) Join us o...

EncephInternational

Partner•3 days ago

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Focal Aware Seizures

Hi I'm recovering from encephalitis and recently been getting focal awareness seizures, they weren't all the time but recently at least one a day and today...

Hi I'm recovering from encephalitis and recently been getting focal awareness se...

•8 days ago

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Get involved in research

Are you interested in taking part in research? Please have a look at the following research projects on encephalitis and its consequences....

Are you interested in taking part in research? Please have a look at the followi...

EncephInternational

Partner•10 days ago

Cambridge Survey

Has anyone seen the neurologist on X that's looking to do the survey with people that have had AI Encephalitis?I couldn't find the link but sounded promising.

Has anyone seen the neurologist on X that's looking to do the survey with people...

•15 days ago

Tension & Head Pressure

I am 16 months into my Viral Encephalitis journey, which I acquired through a mosquito bite and the West Nile Virus. I came within an inch of losing my life...

I am 16 months into my Viral Encephalitis journey, which I acquired through a mo...

•16 days ago

New to the group

Just wanted to say hello and to share my experiences. My son was diagnosed with ADEMs in March 2020 and hospitalised in the first week of lockdown. He was...

Just wanted to say hello and to share my experiences. My son was diagnosed wi...

Sunworshipper74

•18 days ago

Anti-NMDAR Encephalitis Webinar – patient event (online)

Event: Anti-NMDAR Encephalitis Webinar – patient event (online) Date: 19th March 2025 Time: 4pm - 5pm (GMT) Please note that this is an online...

Event: Anti-NMDAR Encephalitis Webinar – patient event (online) Date: 19th Marc...

EncephInternational

Partner•18 days ago

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Are we moving forward? Psychotic episodes

Hey all, our daughter has been home after brain injury rehab since 4th December..auto immune encephalitis since July 2024 with frontal lobe scarring. We have...

Hey all, our daughter has been home after brain injury rehab since 4th December....

•27 days ago

New Here

Hey! I just wanted to introduce myself. I’ve just hit the 1-month mark since my diagnosis. HHV-6 was the virus and we were told it is just a dormant virus we...

Hey! I just wanted to introduce myself. I’ve just hit the 1-month mark since my ...

IThinkILoveCats

•28 days ago

Keppra Side Effects

Hi has anyone on keppra getting really bad insomnia atm , I've been on it since the start of November but since Xmas its been getting worse waking up an hour...

Hi has anyone on keppra getting really bad insomnia atm , I've been on it since ...

•1 month ago

Update on sero negative auto immune encephalitis

Hello all,We have had some weeks now with our daughter back home after brain injury rehab unit. She got her brain swell in July last year. A scary time having...

Hello all,We have had some weeks now with our daughter back home after brain inj...

•1 month ago

NMDA encephalitis after HSV1

Hello everyone.I already wrote about my brother. The current diagnosis is aNMDA encephalitis. He received 4 doses of Rituximab, within 4 weeks. He was on break...

Hello everyone.I already wrote about my brother. The current diagnosis is aNMDA ...

•1 month ago

Levetiracetam seizure medication

Has any one had any experience of side effects when taking Levetiracetam? My Father who is 90 yrs old was diagnosed with Autoimmune Encephalitis approx 2 yrs...

Has any one had any experience of side effects when taking Levetiracetam? My Fa...

•2 months ago

Keppra

Hi guys looking for a bit of guidance here . As I've said in previous posts had encephalitis 8 weeks ago been on the keppra anti seizure drugs since . I've...

Hi guys looking for a bit of guidance here . As I've said in previous posts had ...

•2 months ago

Feeling Low

Hey guys still in recovery from encephalitis about 8 weeks now , nothing feels the same anymore not even xmas ,I have a few days off work but have bad...

Hey guys still in recovery from encephalitis about 8 weeks now , nothing feels ...

•2 months ago

Rehabilitation slowdown and concerns

Hi, My wife has been fighting Encephalitis since August this year and was moved from a hospital to a rehabilitation centre in October. They raised a concern...

Hi, My wife has been fighting Encephalitis since August this year and was move...

•2 months ago

sexual behaviour after encephalitis

Hi! Are here people who experienced different sexual behaviour after encephalitis? I would like to talk. Thank you!

Hi! Are here people who experienced different sexual behaviour after encephaliti...

•2 months ago

Post encephalitis psychiatric medication??

Hi everyone, does anyone here or their family take Risperidone for their psychotic behaviour? My daughter's been prescribed 1mg daily to help calm her down,...

Hi everyone, does anyone here or their family take Risperidone for their psychot...

•2 months ago

idamax

hi my name is Ellen my husband was diagnosed encephalitis in October he’s 74 it’s like his life was taken away from him in seconds that morning he had mri...

hi my name is Ellen my husband was diagnosed encephalitis in October he’s 74 it’...

•2 months ago

Recognising faces

Hard to wite this one without it sounding crazy but the last couple of weeks when I'm looking at people's faces I feel I recognise them from somewhere else...

Hard to wite this one without it sounding crazy but the last couple of weeks whe...

•2 months ago

Iglon 5

Is there anyone that has Iglon 5 ? My husband was diagnosed with this very rare autoimmune encephalitis in 2020 and I struggle with knowing all the symptoms as...

Is there anyone that has Iglon 5 ? My husband was diagnosed with this very rare ...

•3 months ago

Encephalitis recovery

Hi my names Craig and was diagnosed with encephalitis around 6 weeks ago , iam one of the lucky ones who have recovered physically but not mentally. I still...

Hi my names Craig and was diagnosed with encephalitis around 6 weeks ago , iam o...

•3 months ago

HSV Encephalitis, searching for experience

Hello everyone,my mother was diagnosed with HSV encephalitis three weeks ago and I'm searching for people who have gone through this. One week ago my mom left...

Hello everyone,my mother was diagnosed with HSV encephalitis three weeks ago and...

•3 months ago

Hsv and autoimmune E

Hello. My brother is finally receiving his first dose of immunotherapy tomorrow, the medicine in question is rituximab. What kind of change can I expect after...

Hello. My brother is finally receiving his first dose of immunotherapy tomorrow,...

•3 months ago

Ivig treatment, what happens of you stop?

Our daughter has had 4 rounds of ivig. Her brain swelling (basal ganglia) has practically returned to normal however her behavioural issues indicate scarring...

Our daughter has had 4 rounds of ivig. Her brain swelling (basal ganglia) has pr...

•3 months ago

My mom's memory problems!

I am very grateful to all the loved ones who gave me hope and energy with their messages during this period.🩶 Almost a year has passed since my mother was...

I am very grateful to all the loved ones who gave me hope and energy with their ...

•3 months ago

Tension

I have had viral encephalitis for over 1 year now, and the biggest issue I have at the moment is tension in my head and neck. I was taking Xanax and Clonazepam...

I have had viral encephalitis for over 1 year now, and the biggest issue I have ...

•3 months ago

Report of mine 🙂

After every night there will be light 💓 Hello everyone out there, sick people and relatives. 👋😊 I wanted to give you all an update on my...

After every night there will be light 💓 Hello everyone out there, sick people ...

•3 months ago

Is an ABI a hidden disability?

Hello It’s six years since I had VZV viral meningoencephalitis and as a result an acquired brain injury. I suffer with panic attacks and anxiety as a result...

Hello It’s six years since I had VZV viral meningoencephalitis and as a result...

•3 months ago

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