Im reaching out because 3 months ago I experienced a moderate case of encephalitis due to an allergic reaction to a rabies vaccination I received. My symptoms were moderate but concerning nonetheless (extreme sensitivity to light, severe fatigue, mental fog, mild reading problems and problems focusing/concentrating, and mild memory impairments (short term)). I always sounded coherent and never lost any significant motor function. Its now been 3 months since I left the hospital and my short term memory is still impaired compared to pre-encephalitis, my fatigue still comes and goes frequently, and I am often cognitively overwhelmed by group social situations. This was never an issue for me before.
sorry for the long post but I’m just curious to get your guys’ thoughts on whether it is likely, based on your experiences, that I will will continue to recover beyond the 3 month mark? Is it common to still have memory, focus and fatigue problems 3 months after the end of the acute phase of encephalitis? Is it likely that I will continue improving at this point?
thank you so much in advance and really appreciate any insight.
best regards
Written by
Flo2023
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Based on what you shared, I’m betting you will make a pretty great recovery overall, but let’s think about progress in terms of months and years, not weeks or days. Three months is no time at all after hospitalization. I bet you will be feeling a lot better in the next 6, 9, 12 ++ months. Depending on which doctor or patient you ask, they will tell you the most recovery is in the first year after hospitalization, then the second year stabilizes to slower yet present improvement, then who knows after that (at least I don’t, but OldGnome and Wygella have a lot to say on this). For a moderate case of E, you might have long-term (but less severe than now) fatigue or some other symptoms, but I’m betting you’ll generally get a whole lot better. Take your time, don’t push yourself, notice and celebrate the small wins, and build a new lifestyle that is sustainable for your ever-changing needs and capacity. I repeat: don’t push yourself. Don’t try to do everything you did before E. You will improve more, but you have to be patient.
good morning it’s a slow process it’s like a massive clump of wiring where one has been compromised it will take time , take it slowly and listen to your body/mind it will tell you in no uncertain terms your over working me I need to rest.
With me each month something clicked back into place . Good luck with your recovery 😎
Kitnkaboodle is absolutely right. You sound from how far you’ve come already - as though you really will make a good recovery. But she’s also right in saying don’t think weeks. Think progress. So I had HSVE 5 years ago in August. The date is imprinted on my brain. I couldn’t remember how to walk properly, absolutely exhausted all the time, memory shot, speech odd but of course we all look fine so actually no one realises how we feel which can be hard. The good news is that for many of us we do recover. So first 3 months I learnt to walk for example. My memory started improving but really still struggling. One year on. Stick gone. Speech much much better. Fatigue still rubbish. I had ‘crash’ weeks. Anxiety bad. Not something I’d ever had before. Each year I’d look back and see how far I’d come. Fast forward to today. Walking fine, speech fine (except when I’m over tired when I still say wrong words but everyone knows and laughs now. Me too). Memory almost back to normal. Not to what it was. I had a really good memory but absolutely fine. I still have to be kind to myself and say no to certain things or manage my time so I get a rest in and make sure I’d have quiet days. I retired after E so I’m lucky I don’t have to manage working. Anxiety is still a work in progress! I’ve found keeping a journal helps too
I honestly don’t think you’ll go through such a long journey because as you say yours was a moderate case and you’re making good progress after 3 months you may not feel like it but you are So don’t let what happened to me be something that will happen to you I’m just giving examples so you don’t push yourself and feel you should be mending faster than you are
If you look on the Encephalitis Society website there’s lots of helpful information plus A Letter to my Brain, found so helpful when I got low in those early days.
Sorry this is a very long post but we all feel for you in those early days. The best advice I can give is be kind to yourself, don’t push, rest when you need. Find something that relaxes you and do it. Gentle exercise like gentle walks. And try and relax into this slower pace of life at the moment. It will soon speed up again. Take care.
You will definitely recover beyond the 3 month mark. The memory, focus and fatigue problems you are experiencing are perfectly normal .
I was diagnosed as having ‘severe’ encephalitis, with loss of speech, severe fatigue, memory loss and epilepsy. My specialist said that our fatigue/ constant need to sleep in the first year of recovery was an important part of the healing process, because our brains use sleep to shut out sight, sounds, smells and sensations so they can focus on finding new pathways around the damage .
I was also told that we could expect to see much greater progress in the second year , as my brain would have healed and established new pathways around the damage by then, and we would see to what extent my brain’s functions would have returned to normal by the end of the second year .
I was sceptical and thought the specialist was just trying to cheer me up, but that advice was true . I wasn’t back to ‘normal’ by the end of the second year, but I did regain my independence . The fatigue and memory loss became manageable, and I could deal with sounds and smells that I had found previously unbearable .
The fact you have had a moderate case means that it is very likely that you will see significant improvement in the next 18 months . A brain’s healing process takes such a long time because repairing neuro pathways is far more complex than healing broken bones . The main thing is don’t try and rush your recovery, and take it easy . 😊
Hi Flo2023 – just to echo the comments above. Three months sounds like a decent amount of time but to encephalitis it isn’t very long at all. Certainly, if you think you’ve peaked on your recovery you’re probably just a day or week away from further progress and, from my perspective, only when I look back over the year (or more) do I see more tangible improvements. That’s the perfect time for a pat on the back and a well done all round – keep going! Our post-encephalitis improvements are all relative, whether it’s feeling more comfortable in public spaces or being able to stay up later or whatever it might be – whatever you’re aims are, give yourself plenty of ticks of the way there, no matter how small the wins are.
My regional expert told me, earlier this year, that while we (post-encephalitis sufferers and doctors) often talk about the 18 months after having had encephalitis as being the key recovery period, that’s only because it’s the most common period for notable recovery; it doesn’t have to stop there. The brain’s finding new ways of working all the time and finding its new ‘normal’.
I pointed at a picture to my wife every_cloud earlier, one she was looking at, and said “what’s that koala doing?” and she was taken aback that I knew the name for a koala. Might sound ridiculous but she was right – I probably wouldn’t have remembered the word for a koala after first coming out of hospital. It’s a little win!
As I say, all of these are often different for all sufferers but hope this gives you an idea (from my perspective anyway)!
All the best and take care.
PS. I went to hospital yesterday to play some background guitar in the wards I called home for four months! Great to see some of the people there that either saved my life and/or began that long road to recovery for me. The least I can do is play some guitar for them!
It was the day after my first birthday party when I had encephalitis so I really have no idea about what the first 3 months were like, nor do I know what life pre-encephalitis was like (from the day I was born to the day before my first birthday) is all I had so how would I know?
I have always had focus/concentration problems - a short attention span but none of the other after effects you mentioned.
I'm pretty much useless when it comes to talking about the first few months to the first year or two after encephalitis. Sorry I'm not much help to you.
I have met people who are fairly new to encephalitis and basically just listen to them as there's not a lot I can say to them. Everyone is different and every case of encephalitis is different. Many people have improved since they had it, but they all didn't take the same length of time.
Anything is possible no matter how long it takes, even if it's something small to start with.
I agree with Wygella kitknaboodle, and HSE_Survivor.
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