Encephalitis recovery

[Scots_dad]

Hi my names Craig and was diagnosed with encephalitis around 6 weeks ago , iam one of the lucky ones who have recovered physically but not mentally. I still haven't had any follow ups by anyone but am due to go to the seizures clinic soon . When I was in hospital the winter solace happened and I haven't felt right since.I used to love winter and the dark but now just feel anxious when I'm out with the dog and I was never like this before . Wanted to share on here to see if anyone had similar experiences. I was always against people saying they were depressed but now feel it at night time and getting emotional for no reason.

[kitnkaboodle]

All of these emotions are completely normal and expected after E. Be kind and patient with yourself. Let us know what other questions you may have. ♥️

[Scots_dad in reply to kitnkaboodle]

Ty

[lady2189]

Hi Craig

It is very early days my husband contracted encephalitis in March and he too is one of the lucky ones. He has also recovered physically but has been left with some mental issues but these are getting better very slowly. Just take your time and listen to your brain and body as they know best. My husband also gets very emotional which was not a trait he had before. Take every day at a time and hopefully you will see improvements but this may take a very long time.

[Scots_dad in reply to lady2189]

Thank you for the reply exact kind of comment I was looking for

[lady2189 in reply to Scots_dad]

Hi Craig

There is hope! I thought I had lost my husband completely but he has come back. A little bit different but basically still the same person. Rest and time are great healers. You will get there.

[Scots_dad in reply to lady2189]

That's great news your husband is doing well iam on vacation atm do hoping the rest and good bit of sun also help (iam from Scotland don't see much sun 😀)

[Paula-38]

Hi Craig,Good luck when you go to the seizures clinic! Fingers crossed for you.

I had encephalitis the day after my first birthday, and mental health in various different ways has been significantly affected. Paranoia, anxiety, clinical depression, extremely debilitating Obsessive Compulsive Disorder- OCD, and I never looked forward to winter solstice, I always found it depressing not seeing much daylight, and sunlight.

Sunlight and daylight are good to motivate us to carry on with the day, so I totally empathise about the dark days following encephalitis.

However because it was the day after my first birthday, I feel like I'm the same person, so I don't know what I was like before, but I completely understand where you are coming from though.

If there's anything I can do to help, please feel free to ask me anything anytime.

[Scots_dad in reply to Paula-38]

Hi Paula thanks for the reply . Just happened to read the side effects of the anti seizure tablets I've been taking on the bus to the airport today , been on them for 6 weeks and never realised I hadn't read them . Everything iam still feeling at the moment was there in black and white and as I still haven't received my appointment for the clinic I'm not taking them anymore to see if that changes anything I have a feeling it might

[HSE_Survivor in reply to Scots_dad]

Be careful suddenly not taking seizure meds, Craig. Suddenly stopping taking a dose of meds can provoke a seizure . Definitely ring your seizure clinic for advice , and they can tell you how to come off the dose safely.

[Scots_dad in reply to HSE_Survivor]

Yeah spoke to the doctor on the phone today she said the same , it's just hard when all my life I've been healthy and now feel vulnerable and having to take meds daily 😒

[Paula-38]

Hi Craig,I was on 3 anti seizure medications until I was 10, when they changed me to my 2 current meds.

So I'm thinking 6 weeks is early days yet.

I'm so so sorry that you still haven't heard anything about your appointment with the clinic.

Maybe you or a family member could ring them up to chase them up and see what they say?

[HSE_Survivor]

Hi Craig . 6 weeks is really early days .

What brand seizure meds are you on? Epilepsy meds can affect everyone differently . My first brand (I can’t remember the name) had to be changed after 6 months, as it affected my skin and caused hair loss.

Since then I have taken Keppra without any problems, but I know Keppra can make other people feel seriously depressed. If your mood worsens / deteriorates, definitely contact your neurologist, or ask can you speak to someone at the seizure clinic .

Depression can also be a natural feeling while you recover from encephalitis. I was depressed in my first year. I spent my first Christmas feeling very low , despite having a loving family supporting me . But that mood did pass in my second year, when I gradually regained my confidence.

I found my dogs were great buddies during encephalitis recovery, too. My dogs helped to give me the confidence to go out by myself. I’m not sure I’d have walked so much without them .

You’re definitely not alone This charity has a team of counsellors you can speak confidentially to. There are also monthly zoom support groups, if you’d ever like to talk to other survivors online . We’re all here for you . ❤️‍🩹

[Scots_dad in reply to HSE_Survivor]

Hi I appreciate the reply , it's keppra iam on to. The insomnia i had when I stopped taking the kepora for a couple of days was alot worse than the insomnia I was getting taking it, but thanks for the advice I'll keep taking it just hard when your feeling low whilst always being a positive person .I also enjoy taking my dog out get fresh air and clear the mind seems to be when I'm on my own I feel low but it's good to hear I'm not alone in that . Iam back at work full time which helps as iam always around people and we get a good laugh too 😆

[HSE_Survivor in reply to Scots_dad]

If you’re taking Keppra, there’s a few vitamin supplements I’d recommend, Craig :

- Magnesium glycinate has been found by some research to reduce seizures, and a bonus is that many people found it has improved sleep . I take it an hour before bed time , and it improved my insomnia .

- Researchers recommend taking vitamin B6 when prescribed Keppra, to reduce the chances of mood changes. I take a complete vitamin B complex in the morning , as low levels of other B vitamins such as vitamin B12 have also been linked to depression.

- anti-epileptic drugs can block calcium absorption for some people. That happened to me, so I am now prescribed calcium with vitamin D

I’d usually be sceptical about medication advise on a forum from someone like me who isn’t a Dr, but I’d definitely advise you to google the research re: taking magnesium, vitamin B and calcium with Keppra , as it’s really interesting.

I think you’re amazing returning to work so early after diagnosis. It sounds like your brain is recovering well, so don’t be too hard on yourself. Take care . 😊

[Scots_dad in reply to HSE_Survivor]

Thanks for the advice really appreciated and will definitely look into 😁