Diagnosed with viral meningitis and encephalitis in the summer of 2021 at the age of 25. I spent 27 days in isolation in hospital whilst having continuous MRI & CT scans along with numerous lumbar punctures. I am now 5 months into my recovery and I am really struggling with cognitive difficulties and permanent tension headaches. I'm trying to get back to work but my concentration and focus level are pretty much non existent. I cannot socialise in loud or busy places. I feel like after my hospital stay i have had zero support from medical professionals and have no spoken to anyone since my GP a week after leaving hospital. Before my brain injury i was an outgoing, hard working individual with a good career in design engineering who loved meeting friends in the pub, going to gigs/festivals and playing sports. I feel at the moment my life has just been put on hold whilst i recover. I would like to hear from others what their recovery has been like and if it is likely if i'll ever get back what i had?
Meningitis / Encephalitis Recovery - Encephalitis Inte...
Meningitis / Encephalitis Recovery
Hi Rhols96
Welcome and thank you for sharing your story! I am also 25 years old and I got encephalitis when I was 21. Like you, I spent some time in the hospital getting lumbar punctures and tests and it was very traumatic. I can't imagine how distressing that must have been especially during a pandemic.
I relate to everything you have said... everything! Like you, I was outgoing, working and living a normal 20 somethings life then suddenly encephalitis and my life and world had changed. When I left the hospital I felt there was little to no support as an outpatient and I am lucky I had my mam to care for me. However, with very little support, it made recovery very difficult and very lonely. My friends were working and/or in college and I was at home waiting. I was waiting to get better which seemed like such a long road. I started to structure my day and started to do things that would help me recover.
I would wake up early enough to keep a routine (9am-9.30am) focus on the basics of getting washed, dressed, and eating my breakfast. Generally, I would need a break and a rest after all of that! I would do some speech therapy with my mam such as reading a paragraph from a newspaper and writing down what I could remember to try to help improve my memory or even just a word search or crossword. I would rest after that and have lunch. Go for a short walk and rest some more after that. Dinner, rest, and bed. It might not seem like a lot but it helped me so much in my recovery both physically and mentally! Adding structure to my day helps with my mental health a lot.
When I felt ready after a few months of resting, I reached out to my GP and asked for a referral to an occupational therapist to see how I could start looking towards going back to work of some kind. One mistake I made was going back to work too early and to a job that was too demanding and my health suffered because of that. I am now working in a job that supports me and my illness and I ensure I take lots of breaks throughout the day.
I think its very important to note you have been very sick and it wasn't that long ago. It is completely ok to take your time with your recovery. Its not a race and resting is the best medicine!
My family and I got in contact with the encephalitis society which I would highly recommend - encephalitis.info/support
Hey, thanks for reaching out. Reading other people experiences i feel extremely lucky to come out of the other side with just these issues. I can generally go about my normal day as i would of done prior to my illness, however, the more i try to do things to do tasks which require focus and concentration i quickly realise that i no longer have this skill. After contacting the society they have told me to contact my GP to see a specialist in congnitive difficulties. Did seeing someone like this help you? My work have been fantastic with me during this time and i have been doing light duties for a couple of months without pressuring me to return to my usual role
Hi there!
Thanks for your reply. I linked in with a few different specialists but it was a battle to get to see them so I relied a lot on my family to help me call them over and over again looking for an appointment!
I saw an occupational therapist, speech therapist, physio therapist, counselor and also linked it a lot with a psychiatrist who seemed to have a lot of knowledge regarding the cognitive difficulties!
Hi, I am sorry to hear you've been so poorly. I had meningeoencephalitis in Dec20 and so I am a year into recovery.
I know it probably doesn't feel like it but you are so early in your recovery.
Have you reached out to the Encephalitis Society as they have a wealth of information or someone to talk your experience through with if you have only been able to speak with your GP?
Maybe it would also be worth speaking with your GP to see what local rehabilitation services are available.
For me it was only after the initial acute phase when I started to speak with various support sources that I was able to make sense of my experience and move forwards.
Try to be patient and kind to yourself and remember how far you have come in the last 4 months!
Take care
Hi, thanks for your message. Yes it feels like a long time already especially considering all the lockdowns and then when all the restrictions was removed i fell ill so have really had a normal life for a long while which is frustrating.
Yes i have reached out to the society who have advised me to see my GP regarding seeing a neuropsychologist. What kind of progress/recovery have you made so far?
Hi,
Initially I had many physical issues; dizziness, tremors, unsteadiness, fatigue and most of these are better now, although if I over do it they show up again but I do not feel unbearably unwell I just know it is time to take care and rest. I have learnt to try to avoid getting to that point.
But I guess the areas of interest for you are more the cognitive & social side.
I have memory issues, not at a debilitating level but at a frustrating level, so I have had to find ways that work for me to help. My job is as a client services manager and I have a small team, the struggles there have been things like; reporting back on a week or holding meetings and losing my train of thought. I keep a daily 'to do', 'achieved' 'hold over' diary, this enables me to reference back when needed,
I ensure when it comes to meetings that I prep well and keep notes so that I can go through the agenda and I can reference back. In the past when I was so fatigued I couldn't string a sentence together I rescheduled the meeting. That doesn't happen so often now and I try to rest before a big meeting which really helps.
I also struggled with workflow processes, working through steps of a task, I am pleased to say that this is so much better now.
From a social point of view, I suppose I am older than you and so this is not quite as important as when I was younger but I do remember the first time we had a family gathering of approx 35 people and I felt really overwhelmed like the room was closing in. Over time though I have got used to being with more people and it is not too difficult now.
In terms of support to assist moving forward came from an initial call with The Encephalitis Society, a referral from my neurologist to the physiotherapy team where I have been able to access a Specialist Brain Injury nurse and the Occupational therapist led fatigue management course. These have provided an outlet to talk, honestly about how I was feeling (talk through the trauma of it all, including the isolation felt through no visits in lockdown in hospital) , gain a greater understanding of the recovery process and learn strategies on managing fatigue.
When I reached out to the support network above I remember feeling like I was making such a fuss and that I didn't think that there would be any benefit to me but they have proved to be so instrumental in my recovery.
Everyone's journey is different but I hope you find what works for you.
Enough waffle! Have a good day!
You have had to deal with a lot more than i have!
It is extremely pleasing to know that you was also struggling with work flow processes and this issue has got better for yourself. This is one of my biggest issues and i'm finding it frustrating. I find myself staring at my screens hoping my brain will kick into action like it usually would of done but its drawing blanks at the moment! I rang my GP this morning regarding been reffered to a specialist so i'm hoping they can sort that out for me? 
Hi ya, you sound just like me, everything is the same, it's not been long for you and you will have trouble with loud places, socialising etc I went back to work after 6 months n struggled I had to drop the Wednesday to have a break, I had exactly what u had in August 2019, and I'm still struggling been off work for another 6 months because my work is stressful n it just feels like I'm beating up my brain n left exhausted n brain has to work harder. Was on amitriptyline for headaches n citroploram for depression, wasn't working so now on propranolol for headaches n so far so good n changed antidepressant. Hospital n aftercare is poor I know you feel your just dumped back into society 😔 but kp fighting I've only just had neuropsychometry tests and shows I struggle with connections in my brain even though my mri is okay, on a micro level your neurons and connections get abused, it almost felt like I wanted to see x on a scan and y will fix it! But the damage is there, biggest advice I can give from my own experience is don't be hard on yourself its a slow process and don't rush back to work, I find it hard excepting this is me now n will I ever get back to me before, who knows but time will tell! Did you see a neuropsycholgist? You should have some form of aftercare if not go to your g.p, the encephalitis society have a sheet for your gp with info on it, I gave it to my gp because his never had a patient who has had encephalitis and was helpful! I know how your feeling and its crap and you feel alone, but your not were here for you, and helped me to see others who had it, was a relief because even now doctors etc just don't quite understand how you feel like we all do! Just got to be strong and patient and listen to your body! X
I returned to work after 2 months of leaving hospital and have worked upto 4 hours a day approximately but i complete no way near enough work as i usually would of done, i usually find myself just staring at the screen because my brain just isn't clicking into action! I have to break the simplest of tasks down what i would just do naturally and im becoming increasingly frustrated, however, i don't become exhausted like most people. My headaches don't cause me pain so opted against using medication, it is more of a tension build up in my temples which is uncomfortable. I haven't seen a neuropsychologist but after joining the society it has become evident this needs to be my next step.
Has your treatment helped you and has it got better? Have the medical professionals said you're likely to make a full recovery?
Thanks for your message!
Hmmm urm neuro psych I spose is helpful but I've had so much therapy n counselling you kinda get bored of it because you want them to just fix you not talk about your whole life from childhood, they just advice you on your feelings so helpful if you haven't had it yet. Since I was ill, I have improved but not how I would like it to be like before, I thought I'd be better by now and its 2 years, medication def helped with my headaches and mood, fatigue n brain fog though n concentration... don't like busy environments especially supermarkets they tend to trigger a headache, it's good u don't have bad headaches because it really messes you up! Things get better very slowly, no they haven't said when and if it will get better because its our brains and they are sooooo complex, the first neuro psych was like it can take 3 years n if your still suffering after that then your pretty much stuck but another neurologist said can take alot longer and can improve. I'm waiting on neuro rehab to help me develop strategies n how to cope and overcome things like fatigue, headaches, concentration...It's just such a tricky area because they cant truly see inside our brains, it's more up to us and learn what triggers problems and try and avoid them which is frustrating when your a go getter but not no more, I duno I'm hopeful one day I'll be alot better and go back to the old me but also not betting on it coz don't want my hopes to get squashed, just got to take each day as it comes and be thankful for what we can do when it could have been so much worse.
Hi Rhols96,
Thank you for reaching out to the Encephalitis Society, we are sorry to hear that you were affected by encephalitis. Recovery from encephalitis may take time. Initial recovery may be rapid but usually falls short of complete. Further recovery takes place more slowly over months, even years. People are different, no two cases of encephalitis will have an identical outcome and people recover at different paces.
It is not uncommon for problems to present more at home as you try to get back to normal life. Cognitive problems are common after-effects of encephalitis, please click on the following link to find out more about cognitive changes and recovering after encephalitis:
encephalitis.info/cognitive...
encephalitis.info/guideline...
The Encephalitis Society's support team is also here for you - please do not hesitate to reach out to us for support on: support@encephalitis.info we're always happy to help.
Hi Rhols96,
I am so sorry to hear that you are suffering from Meningoencephalitis, it is only 5 months ago since you were in hospital so it's still very early days yet.
I had Herpes Simplex Encephalitis back in the 1970's just after my first birthday when there was no such thing as The lovely Encephalitis Society in those days.
My attention span has always been poor so I always had great difficulty with concebtration/focus etc, my social skills were also affected i.e slow processing speed, Executive Dysfunction talking about two different conversations and if I'm interrupted I don't know what I was going to say, plus anxiety, paranoia, I also experienced bullying as a result of avoiding talking because of my paranoia, I couldn't make a sentence once without stopping and starting, and then it was just to my parents nobody else.
I saw a child psychiatrist and child psychologist but nobody could make me out. I only had one aspect of memory such as following a TV storyline/plot but it was only last year when I got a brain injury diagnosis.
I'm so pleased that there is more help out there for you now . Hope you get all the help you are entitled to and don't do too much too soon.
Hi! I had viral meningitis and encephalitis in August 2020 and recognise many of the changes you describe in myself though I am 41. I too was outgoing, hard working and loved to socialise before. It’s been a real change of lifestyle since, out of necessity. Limiting social encounters so I don’t get overwhelmed, keeping work to a healthy slow rhythm with lots of breaks. Gradually I see my capacity is improving but some sensitivities I’ve accepted are here to stay.
Sound is a big one for me, so I now carry ear plugs everywhere I go. I bought ‘loop’ earplugs that hang on a key ring from my phone so they are always with me. Noise cancelling headphones are helpful too. As far as sports go, it works best for me with activities like walking and kayaking, I can go gently, take breaks and avoid pushing against my energy levels. I am able to socialise a bit now but don’t drink alcohol anymore as I find it too taxing. Realising that these heightened sensitivities are here to stay, I read up on the highly sensitive persons trait and found some useful tips - such as taking 2 hours a day alone, not on a screen, just to rest and recover. It also helped me to put this new life in context, to see the positives of heightened sensitivity rather than just mourning my life before E. That grief is real, but it’s not all bad. This illness is a huge upheaval but I hope for all of us there are some new possibilities in the life that comes afterwards.
best wishes
Julia
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