I had a positive call with the neurologist yesterday to assess how I am doing. Just thought I’d share main points with the forum as I’m always interested on how everyone else is progressing to compare any similarities. I was diagnosed with HSV Enc in June last year. So hope this is of interest.
Mains points of discussion:-
1. Latest MRI showed significant reduction in swelling although some scarring was evident.
2. I’ve been advised to change/transition anti-seizure drugs from a current high dosage of Keppra to medium dosage level of Lamotrigine. This is a 16 week schedule (I’m in week 10). I’ve been feeling “out-of-sorts” throughout this process.
3. No seizures since discharged in July last year.
4. Reduction in following symptoms: headaches, brain fog, detachment and dizziness.
5. Still experiencing fatigue, depression, anxiety and crying. I also have a constant overwhelming feeling of “strangeness” about me. I think this currently constitutes the “new” me ie No. 6 (see previous post).
6. Sleeping tends to be broken into 2 hours asleep and 30 mins awake repeated throughout the night.
7. Always feel at my worst for first 2 hours in the morning then I “come round” and am able to function ok.
However, overall the neurologist thought I was making good progress and has agreed to see me in 3 months.
Happy to answer any questions.
Remos.
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Remos
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You had the same type of Encephalitis as myself (although it's still very early days for you yet). I was too young to know what was going on at the time when I was in my first year post encephalitis.
I would have been able to empathise with you more when I was little in comparison to how I am now, with regards to seizures , also starting and changing anti-epilepsy medications medications and eventually I ended up on Phenytoin (which I believe is similar to Keppra), and Clonazepam and this combination has stopped my seizures for 28 years though I have been taking them 36 years now and indefinitely.
I have always been a very anxious person. I have a diagnosis of Clinical Depression, Obsessive - Compulsive Disorder - often referred to as OCD . OCD is a disabling anxiety disorder.
I hope you find this helpful.
Please feel free to ask me any questions at all as I'm more than happy to help if I can.
Thanks Remos. I'm always more than happy to help if I can and I'm one of the Encephalitis Society's volunteers as there are so many of us now.
I had encephalitis the day after my first birthday back in the 1970's ,when unfortunately there was no such thing as the Encephalitis Society in those days. So what else could I do except plod along and get on with it.
Please feel free to look through all my posts I have put up in the last two years you will be able to see different parts of my life story in each post I have done.
I have experienced anxiety and depression as I have been recovering from AE over the past 3 years. My doctor asked how I was doing and I was honest with him. He said something that made a lasting impression on me: “Low mood is common for people going through an ordeal like this”. He then prescribed some antidepressants which have made a difference and helped me feel a bit better. Not a cure by any means but a significant improvement.
Yes, this is an ORDEAL we are going through with AE and its effects as we recover and adapt to our new reality.
Thanks for your reply. This is indeed an ordeal. I don’t think the change of anti-seizure meds is helping either. I’ll be glad when I’ve completed the transition. I guess there are no answers to any of this really, only pain and perseveration for now. But hopefully better days lay ahead. Appreciate your response and I’d also like to wish you continued progress. Look after yourself.
Hello Remos, this sounds like a wonderful report for you, especially being so early in your recovery!!! I remember being overemotional in my first year, as well, especially with the crying for trivial things. Here's hoping that one year from now, you improve twice as much!
About 5 minutes ago, I unloaded my new 58" TV out of my tiny Fiat 500, which was quite a spectacle for other shoppers, who doubted it would fit!! The TV I selected only weighs about 40 pounds, box included, so I could easily handle it. I have proclaimed myself to be "The World's Strongest Gnome", and must live up to the title!! Now I am prepared to watch episodes of "The Prisoner" in full splendour!! I watched the first one last night and enjoyed it thoroughly!! The Village actually looked appealing to me, as a place to live, until that huge white ball thing appeared!! I believe it was called "Rover". I can't wait to see what subsequent episodes reveal!!
Once again, thanks for making me aware of this old TV series! I have also learned a new term thanks to posts here, specifically, "penny-farthing"! I had no idea that meant what we call a "high wheel bicycle" here in the U.S. I also learned that a farthing is much smaller than a UK penny, like the wheels. I love learning new things, no matter how seemingly trivial, and this has done it for me!!
Hi OldGnome,It’s comforting to know you think I’m doing well at this stage. Despite the relatively positive report I always feel I’m not getting much better but I guess it’s a marathon and not a sprint and I need to be thankful for the progress I’ve made so far.
I’m glad you have your new TV set up. Didn’t know you’re the worlds strongest Gnome. Let me know when the next competition is due to be shown. I’ll be sure to tune in. Also good to know you enjoyed the first episode.
I know you’re really curious in all things but whatever you do please don’t go out and buy yourself a Penny Farthing/High Wheel Bycycle 🤣. Or if you do please ensure you send all of us a photo.
Thanks for your ongoing support and good wishes - always interesting and very much appreciated.
Hello again Remos! The first year (actually 2 years for me) were full of doubts, confusion, and many things were shifting around like a sine wave on an oscilloscope. Highs, lows, and some "in between" where they should be. As you say, it is indeed a marathon, and not a sprint. The fact that you know this is a big plus, in my opinion.
I was laughing quite a bit at your reaction to my declaration of being the World's Strongest Gnome!! I said that at my job quite a few times, and it looks like I will have to reassert my title if I make it to work on Monday. (We are having a nasty round of snow and ice here!) I am only about 5'4" tall, and others in this area average more than 6'!!
Funnier yet, is that you must now be a prognosticator, since I actually AM looking at penny-farthings! I believe I found one that I might be able to ride, since it is designed for a child! I believe it costs over 400 pounds though!!
Thank you for sharing your progress, it sounds as though you are heading in the right direction.Although, I am sure, it seems like slow progress, there are real glimmers of light.
Hopefully you can take reassurance from this and trust that better health is just around the corner, but you need to be patient and kind to yourself in the meantime.
Your post took me back to the experience of the horrible nights where sleep evaded me or when I was asleep, the dreams and disorientation were scary, not being able to make sense of my world, but not wanting to get out of bed because of the clumsiness & dizziness.
Sharing experiences helps to come to terms with the trauma of E.
Hi GreenBamboo,It’s a great help to hear you think I’m heading in the right direction and that things will improve further with time. It’s even more comforting knowing you’ve been there and can speak from experience. Like you did, I’m finding the nights difficult and sometimes scary. A bad nights sleep is always followed by a day of fatigue and I don’t know how to break the cycle. I guess as you say patience has to the answer.
Also just read your recent post and I hope others are able to give you the same support you give me. You deserve it.
Hi. This sounds actually a really positive meeting after 9 months. Did you only have the seizures during the early onset of HSE? I had three with increasing severity in the first 8 hours but nothing after that? I ask because they weaned me off Kepra after three months and didn’t replace it with anything and 3 years 8 months later (not that I’m counting of course 😀) I’ve stayed seizure free. But my brain scan only showed minimal scarring and it was explained that where nerve paths had been lost they would find other ways to connect eventually, which is still happening.
Sleep, like you, still not good. Two hours in one go is great but I don’t lie awake for ages every night now, just occasionally which means mostly I’m less tired.
At your stage the headaches had almost gone but the fatigue was still bad, especially morning and early evening for some reason. Sorry, I do still get fatigued easily which leads to some brain fog but I have honestly learnt to put that into my daily life so it doesn’t depress me or even annoy me most of the time. I’m still more anxious than pre E but so so much less so.
I still talk very fast with odd words very very occasionally when I’ve seriously overdone it but can laugh at myself now so other people do. That helps!
My walking was still a bit of a struggle and I was still using a stick. (Fine now). But I started with rashes on my body sort of starting on my head and literally working down to feet. All gone now but very disconcerting so I hope you don’t get that.
I know this is a long reply but it is interesting all the similarities but also the differences we all experience. Also I hope this helps you know that things really really do get better and in some things better overall. Like I know I don’t cope well with stress any more and I was someone who thrives on it so I’ve had to learn how to stay calm and ‘switch off’. Take care. And look after yourself.
It does seem as though our journeys are similar in many ways. I also had 3 seizures in the first 8 hours. None since but I do remember having a few auras for a couple of days afterwards but again nothing since. I’m finding the withdrawal of Keppra rather challenging but I guess I just need to stay with it. Your message that things should continue to improve is very reassuring, even more so considering the similarities in our journeys. Walking and talking also seem ok now but I hope I can miss out on the rash!
Your responses are never too long. I was hoping you’d reply as I always look forward to reading your words of comfort and wisdom. Thank you Wygella.
That’s nice. Thank you. We do sound so similar. I also had auras, and weird patterns in my brain for the first few days. Then mild hallucinations which had to have stopped before I could leave hospital.
I wonder if being taken off the Kepra so early actually did me a favour reading yours abs other peoples experiences as I didn’t have many withdrawal symptoms. Although I can honestly say I was scared E would return for a good two years afterwards! It got easier and now I only very occasionally think about it happening again.
It isn’t an easy road for us survivors but as I know I’ve said before, your health and brain does get better, and in some ways life is sweeter in the good times because being forced to slow the pace down means I appreciate little moments that I would have missed before.
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