Learning to Navigate Life with Anti-NMDA Receptor Encephalitis

[ShashankR]

Hi everyone,

I've recently been diagnosed with Anti-NMDA Receptor Encephalitis, and it's been incredibly overwhelming. The last few months have felt like my mind has been on a path I couldn't understand or control — and trying to make sense of it all has been exhausting.

I'm still learning how to process this, and I'll admit—it hasn't been easy. There's fear, confusion, and a deep sense of vulnerability. But I'm here now, hoping to connect with others who've walked this road.

I'm looking for support, encouragement, and insights — anything that can help my family and me navigate this better. Your experiences and guidance would mean the world to us as we take this one day at a time.

Thank you for letting me share this.

[EncephInternational Partner]

Hi, so sorry to hear this. Hopefully you gain some support from others on this forum. If you haven't already, please do have a look at our website and get in touch if you would like to speak to us [e-mail]. We also have monthly online peer support groups where you can virtually meet others with experience of encephalitis encephalitis.info/online-pe...

[eldonlake]

Thank you for sharing this. I can really relate to what you’ve said. I was diagnosed with a rare form of encephalitis in April 2023 and it turned my world upside down. I spent two months in a coma and have been working through the physical and emotional effects ever since.

That feeling of your mind going somewhere you can’t follow is something I understand well. It’s hard to explain to people who haven’t experienced it. The fear and confusion, especially in the early days, can feel completely overwhelming.

What helped me was knowing I wasn’t alone. Connecting with others who understood gave me strength on days when I felt lost. There’s no easy way through this, but there are people here who truly get it and are ready to walk alongside you.

Take it one step at a time. You’re doing better than you think.

[HSE_Survivor]

Hi ShashankR. We’ve all been on the recovery journey, so we know how hard the first year can be. You’re definitely not alone . It’s very normal to feel exhausted while the brain repairs itself. If you feel overwhelmed, don’t hesitate to have plenty of rest while you recover . Sleeping allows the brain to cut out sight, sounds, smells and sensations so it can focus on creating new neuro pathways around any damaged areas. I found listening to music to be a lovely source of comfort in the first year , as it is one of the least tiring forms of entertainment for a brain to deal with . I was advised to be patient, as it would take two years to see to what extent my brain could recover, and that proved to be very true for me . It is very early days for you. Please don’t hesitate to ask any questions you may have in the months ahead .