Ongoing after effects of viral meningitis

[Crackers22]

Hi everyone, I’m new to this forum. I have been reading a lot of stories which are helping me to better understand this illness and it’s after effects after being told I would be back to normal within in a week so thank you.

I had viral meningitis in September 2024, treated for suspected bacterial meningitis but lumbar puncture showed it was enterovirus so was discharged with no advice or follow ups. Fast forward to now I’m still struggling with severe headaches (pressure in my head, eyes, ears, cheek bones and jaw), neck and back pain, extreme fatigue, aching muscles, slowed cognitive function. I can’t tolerate bright lights or loud noises. I’m awaiting appointments for opthamology ENT and neurology. Optician found crowded optic nerve discs on both eyes so referred me on. Some days are better than others but on the whole I’m no further along than I was 10 weeks ago. From speaking to Meningitis Now and reading a lot online from people who have gone through the same I know that these symptoms can be expected and I just have to give it time.

What I’ve come here to ask is if anyone has experienced raised temperatures in their recovery. The first time it happened was alongside a crippling headache so went a and e was re admitted and had bloods done to check for another infection but all came back clear. But every day maybe once or twice I get a horrible feeling all over my head like maggots crawling just beneath the skin, it feels like everything is pulsating. My ears start to burn and turn red and my face flushes sometimes one side sometimes both and when I check my temperature during these episodes it’s really high - has reached 40c a couple of times. I haven’t got an infection anywhere that I know of and once the feeling gets easier in my head my temperature comes back down to normal. I’m pretty certain it correlates with this pressure building in my head and am curious to see if anyone else has had the same.

I have an opthamology and ENT appointment 3rd Jan so not too far away and hoping it will shed some light on what’s going on xx

Thanks in advance xx

[Chocoholic12]

I had viral meningitis and encephalitis. You are describing encephalitis! Get checked out and find out if you have encephalitis. It’s going to require a lumbar puncture and ct scan.