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Encephalitis International

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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...

•5 days 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 ...

•10 days 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...

•20 days ago

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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 ...

•22 days 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 ...

•22 days 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...

•1 month 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...

•1 month 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...

•1 month 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’...

•1 month 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...

•1 month 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 ...

•1 month 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...

•1 month 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...

•2 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,...

•2 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...

•2 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 ...

•2 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 ...

•2 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 ...

•2 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...

•2 months ago

How long to heal?

My daughter 22 fell ill with encephalitis in July this year. She responded very well to IVIG and steroids for 5 days. She left hospital feeling well enough to...

My daughter 22 fell ill with encephalitis in July this year. She responded very ...

•2 months ago

Does advocating for yourself stress you out?

Hi all, I don't know how to word this, but I'm prone to stress and I find advocating for myself extremely stressful when I'm not listened to and/or understood...

Hi all, I don't know how to word this, but I'm prone to stress and I find advoc...

•3 months ago

Devices to stimulate brain recovery

Hi, has anyone tried any devices to stimulate brain recovery? I saw an ad of Neurosym on Facebook: https://nurosym.com/products/nurosym I wonder how much that...

Hi, has anyone tried any devices to stimulate brain recovery? I saw an ad of Neu...

•3 months ago

Herpes simplex encephilitis - no change

my mum was diagnosed with hsv encephilitis last November. She was discharged from hospital in April into a neurological rehabilitation centre. She can walk...

my mum was diagnosed with hsv encephilitis last November. She was discharged fr...

•3 months ago

article in the Sunday Times

Hi all, I was interviewed about the explosion at Saxavord spaceport a few weeks ago and it turned out I’d met the journalist before - I had to tell him I...

Hi all, I was interviewed about the explosion at Saxavord spaceport a few weeks ...

•3 months ago

Anti GAD positive

Anti GAD has come back positive for our daughters undiagnosed encephalitis. Has anyone experience with what this is or means? Her symptoms are all behavioural...

Anti GAD has come back positive for our daughters undiagnosed encephalitis. Has ...

•3 months ago

Hsv-1 encephalitis battle- partner's question

Hi, my wife is going through Herpes Encephalitis at the moment. She's 38, the same as I. We are in our 7th week. I took her to ER in a good condition when that...

Hi, my wife is going through Herpes Encephalitis at the moment. She's 38, the sa...

•3 months ago

21 with encephalitis need some help

Story in bio I’m just more wondering and worried about if anyone else’s memory loss was bad or if they had memory loss problems and if you live in the uk do...

Story in bio I’m just more wondering and worried about if anyone else’s memory l...

•3 months ago

Sleeping Meds

Hello Everyone, I have had Viral Encephalitis for just over a year now and struggle with sleeping, much like many others. Since I was released from the...

Hello Everyone, I have had Viral Encephalitis for just over a year now and stru...

•3 months ago

Drinking

I have just passed 1 year in recovery from Viral Encephalitis. I still take medication (anti-depressants & sleeping aids). I still have symptoms (headache,...

I have just passed 1 year in recovery from Viral Encephalitis. I still take medi...

•3 months ago

Happy Days

Some guidance: Routine, rest, good diet and mental and physical exercise where possible. It takes time, I'm in my fifth year and still making progress. (Can...

Some guidance: Routine, rest, good diet and mental and physical exercise where...

•4 months ago

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