I lost my lovely mam a week and a bit ago and I am trying to piece together what has gone in. She has had a few episodes where the doctors have thought she had encephalitis but then has bounced back but not this time.
mat the beginning of January she was unwell so I took her to A&e where she had a seizure in the waiting room and then another one whilst she was in the hospital bed. She was very I’ll then became conscious but had delirium and paranoia she was on antibiotics but she wouldn’t take them so they just had her on a drip. This subsided after a few days and she seemed to massively improve. We talked about discharge and then all of a sudden she talked about feeling like death was around her and that she had seen bright white snow on the ward and she had kaleidoscope patterns in front of her eyes. Then she had a day of being very sickly, then she started to have problems swallowing and I said look what is happening here. When her speech deteriorated (speech problems and slurring occurred many times over the past few years) the doctors then took notice. She was out on a side ward and they talked about doing another MRI and a lumbar puncture. The following day I went to see her and she was unconscious. They did the MRI and found encephalitis and then the lumbar puncture showed herpes simplex virus. They had already started her on antivirals and antibiotics but she didn’t gain consciousness and we lost her on Jan 27th. I am puzzled why they didn’t ‘catch it’ when she first went in but scans were clear. Could this have been prevented if the treated sooner and also it feels like this has raised its ugly head again after her being in hospital for four weeks the year before and her behaviour being just like this case. Be so happy to hear from anyone else who has had this type of encephalitis z thanks
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Tb2506
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I had the same type of encephalitis the day after my first birthday. I only ever had it once, but I do know other E warriors on here who have had it a few times .
I'm so so sorry for your loss. Sending you and your family my condolences. You'and your family are in my thoughts
Back in September 2017, I was diagnosed with Herpes Simplex Encephalitis. Honestly can't remember anything apart from the day i woke up in hospital after I had a part of my skull removed to allow my brain to swell without being crushed under the skull.
Back round about April last year, I had a dream one night that I did actually still have the encephalitis. About 3 days later, I had a problem with my right eye. A big black dot appeared in my right eye sight. Went to the opticians but they couldn't figure out what it was until I said I had had encephalitis back in 2017. Turns out that's what it was. The encephalitis had came back for round 2 and went for the next target, my eye.
Apparently it's a pretty common thing for it to come back again one way or another but just depends on what part of the body that it attacks. Eyes and brain aren't really good at self-defence it seems.
Hey Tb2506 - I’m so sorry to hear you’ve lost your Mum. If it helps at all, I have had encephalitis twice – I had been having what we (me and my wife) thought was just a bad cold/ flu when, one day I just stopped making much sense and – together with odd things I was doing – my wife decided to take me to A&E. I quickly stopped being able to make sense of anything and was unable to eat or speak. The hospital worked out this was herpes simplex virus encephalitis pretty fast, I also had a seizure, and they induced me into a coma to give my brain chance to heal. I was getting better once I came round – although when I say getting better, I mean emerging from doing nothing as I was still unable to eat, speak or very much on my own – but then I seemed to head downhill again. This was autoimmune encephalitis and I had to overcome this. The five day plasma treatment was the game changer and finally left hospital a month or so later. I remember crying when a nurse mentioned something like “in case you have encephalitis again” and I was faced with the idea of going through it all over again – so I think it’s possible for a third time even although very very unlikely.
I don’t know if any of that helps at all but I do relate to at least some of what you’ve mentioned above. I found out encephalitis can strike back in, I think it was, 20% of cases. Encephalitis is definitely more common than most people in the world realise but still pretty rare and having two cases rarer still. The medical experts are certainly finding out more all the time.
Thanks for being brave enough to share you and your Mum’s story – I hope you find this group helpful. Our thoughts are with you.
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hope you’re ok now xx
