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[nicksig]

I'm new to this forum. I had viral encephalitis in December 22 and was admitted to hospital following a seizure. I have since been diagnosed with brain scarring and some atrophy. I take Keppra to prevent seizures. I had hoped to recover quicker but I'm finding it a very slow process. I can now read and listen to some music and my concentration span has increased, but I am still off work and need to rest throughout the day. On a good day, I can function well but my memory for times/dates/detail can still be a little off. On a bad day, I struggle to sleep, feel a constant need to pee, and have dreams that come back to haunt me through the day even though I don't know what they really are or what they mean. I have also found that diet makes a huge difference. I no longer drink alcohol but salt and sugar can really effect me. Does anyone else share some of these experiences, or have any advice? I have had little help from anyone in the health care service since leaving hospital, and still feel like I am finding my way.

[HSE_Survivor]

Hi nicksig. Your experience is very typical of encephalitis. I still need to take Keppra to prevent seizures 10 years since my diagnosis, but that might not be the case for you. My consultant advised us that it would take two years before we could see if epilepsy was to be a long term problem. I was unlucky, as many people don’t continue to have seizures when they’ve fully recovered .

Your need to rest is typical , too . The best explanation I was given for tiredness was that was that pre-encephalitis our brains operate on powerful Duracell energy batteries, but after the virus, the damage caused to our brains makes it feel as if they’re operating on a cheaper model of battery that runs out much faster during the day. My energy levels gradually improved , but it was a long process, as it takes a brain a lot of energy to repair damage .

The fact you can read and your concentration span has increased is a really positive sign that your brain is repairing well. It took me a full year of speech therapy before I could speak, read and write independently.

If you local health care service is useless , I’d recommend ringing the Encephalitis Society charity and speaking to one of their support advisers . The charity organises local group zoom meetings where you can speak to other survivors , and the charity’s professional staff can give you great advice on what support is available while you recover :

encephalitis.info/support

This forum group is full of who have had encephalitis , so we’re all here for you if you ever need a friend .

[nicksig in reply to HSE_Survivor]

Thank you

[Wygella]

I know it doesn’t feel like it but you are actually doing really well. I had HSVE nearly 5 years ago when not so much was known about it, so like you I was left a bit in limbo. My GP had never heard of it. However on the plus side because I only had the 3 seizures (last one severe) within 24 hours, I was only on Kepra for 3 months. Not knowing it should have been long, I was so pleased to be off it and felt a lot better.

Like you I expected to get better quickly. E isn’t like that. So if you are reading and listening to music a bit that’s a sign of really good progress. I still struggle with listening to music for too long which is miss. But I can read now with no issues. Sleep disturbance, peeing a lot, memory issues and in my case still getting words wrong are common denominators for us all post E I think But they do improve Honest

I now know a lot of things. Like looking back I can see how far I’ve come in 5 years. I couldn’t remember how to walk and had a stick for nearly a year. No issues now. The fatigue was really debilitating initially. Now I know I have to pace myself but can function fine. I’m older than you so I tell myself I’m allowed to take a quiet day sometimes !!

As HSE survivor says, the Encephalitis Society are so helpful. Also they have A Letter to My Brain on their website. I honestly think that helped me more than anything. It told me to listen to my brain. Well worth a read.

Finally I’m sorry but you can’t be in a rush recovering from E. It will take its own time in its own way. All of us here have different degrees of severity and different ways our brains have been affected so try and be kind to yourself. Don’t push too soon. It gets better honestly but it takes much longer than I think any of us expected. Good luck. This is a safe place to tell us how you’re doing because we all understand when others struggle even those closest to us.

[OldGnome]

Hello nicksig,

Welcome to one of the very few places online where you can really find out a lot more about others' experiences, and know that you are not alone. You might even find a useful tip or two, regarding how to deal with specific problems you are having.

Each and every case of encephalitis is similar, but quite different at the same time, if that makes any sense. Some have suffered viral, some herpes-related, etc.

We also recover differently. For some, they seem to get right back to living just like they used to. For others, it takes a LONG time to get back some of our "old lives" and the things we used to be able to do, are not possible. At least not without MAJOR difficulty.

In my case, I was not able to work any more and after a lengthly process, I am now considered to be fully disabled. I always push my limits, though, and am able to do some of what I was able to, but not nearly as much of it. For example, I work only 8 hours per week at my old job, instead of the normal 40+. It's not much, but at least it's something. I used to plant HUGE gardens on my property, now I have a difficult time with a little 25' X 35' patch. Once again, it's not much, but at least it's something.

Don't forget that you are VERY early-along in your recovery time, you will hopefully gain back a lot of what has now gone awry.

Since I am "across the pond" in the U.S., none of the resources that are available in the UK, are available here. I have heard marvelous things about the Encephalitis Society's "in-person" assistance from others on the forum here. Hopefully, you can talk to some folks who will point you in the right direction, and afford you with much-needed assistance at this time.

Here's to hoping your recovery is as quick and complete as possible!!

OldGnome

[The_Bass]

Hi nicksig and welcome to the forum here – I hope you’ll find it really useful, I know I did. As many people have said already, a few months after being at hospital, it is very early days in the road to recovery and I personally didn’t find the journey a straight line – ups and downs definitely but when I look back, I’m able to see that journey and how much has massively improved. I’m coming up to two years now.

As I said recently, a local expert told me ‘the encephalitis comeback’ is often said to take place over the first two years or so after having had encephalitis but it can, and often does, carry on and on beyond. I certainly felt like maybe I’d peaked not long after returning home from hospital but the truth is, so much more returned months and the years afterwards, such as my ability to spell words, concentrate, not get so tired, eat properly … on and on …

Not being able to sleep might be connected to any medicines you’re on and also the need to go to the toilet much more than you’ve expect. I found I was off to the toilet every time I moved from room to room – the side effects all seemed outrageous but I can definitely vouch for their reality!

I am off all of those drugs now – I am one of the lucky ones in that respect – and ‘just’ mild antidepressants to keep me on the straight and narrow. Well, fairly straight and narrow … 🙃

I don’t want this to look like a brag – I really appreciate many of us here are not so fortunate – but the recovery, whatever yours might look like in the many years to come, just takes bags of patience and, annoyingly, time.

Keep us up to date with how you get on. All the best to you 👍

[Tuesando]

my partner got encephalitis in 2020 and all those symptoms (+ epilepsy) were things we went through. With encephalitis patience is key. At first we were told that we should expect a two year recovery period. Two years sounded like eternity back then but it really was true. Things got gradually better. If I were to give you some advice I’d say look at the next two years as a gradual recovery. Think of some milestones you could achieve - like in 6//12/18 months I would like to be able to XYZ. Also, meet other sufferers of encephalitis. We attend a monthly zoom call for sufferers in London organised by the encephalitis society. There are also bimonthly meet-ups. It really is very helpful.

[nicksig]

Thank you to everyone for their thoughtful and helpful comments. When I came home from hospital in late-December I had no idea it would be such a long way back to any kind of normality. I was discharged without any medical support and I thought I would just get better once I got home. Nearly 6 months on, I realise now just how wrong I was. It is so good to hear that recovery still happens over a 1-2 year period. Currently I'm struggling with insomnia - that is the latest battle but, again, hopefully, this will improve. Thank you and best wishes to you all