I need help!

[Ftmz]

Hello, my mother was discharged from the hospital two months ago. Her disease was herpes encephalitis type 1. Now, after two months, her physical and mental condition has decreased compared to when she was in the hospital. I want to know if this is a normal issue in the recovery process of encephalitis. Is it? Are we still on the path of improvement? What should we do to accelerate the improvement?

[kitnkaboodle]

Yes, that’s expected. More problems show up after hospital, as one tries to return to any semblance of normality. But it’s not normal. Don’t expect normality. Over the next few years, your family will build a new normal. I’m sorry this happened to your mom, and I hope you all have plenty of family support.

[Ftmz in reply to kitnkaboodle]

Thank you so much! I really need these tips right now. Can't she ever go back to normal?

[kitnkaboodle in reply to Ftmz]

I don’t know about her specific case, but most survivors of severe encephalitis have permanent problems. I am over 3.5 years out, and I can say that I will never feel like I never got sick. I will never fully recover. “Full recovery” is a lie for someone like me.

But, again, I don’t know her case at all. I didn’t have HSV1 E, and I don’t know how severe her case was or for how long her brain was inflamed. Her brain might still be inflamed, actually—mine was for 3-4+ months.

[Ftmz in reply to kitnkaboodle]

The doctors said that my mother had a lot of brain infection, but she never had a seizure. How long does it take for the brain infection to disappear after the virus is gone?

[kitnkaboodle in reply to Ftmz]

Like I said, my brain inflammation lasted for months. Every case is unique. That’s why repeat MRIs and LPs are often necessary to track progress.

[Paula-38]

Hi Ftmz,

I had Herpes Simplex Encephalitis like your mom, the day after my first birthday. I believe I was in hospital for 6 weeks, I did initially improve, but I can't say if I mentally improved a few months after because I would have been 18 months old.

I did have ongoing problems at the time growing up but they have improved a lot throughout my lifetime so I think time is a healer and there is room for improvement even if it's a small thing, every small improvement adds up over time. "Patience is a virtue".

I think the Herpes Simplex virus affects children and adults differently.

I think "normal"for me, was my full life after the Encephalitis. I didn't have a new normal as such, just the same normal if that makes sense. I don't think I know what I was like pre - encephalitis to be honest so I had nothing to return to if you know what I mean. I think most of the problems I had growing up are much better now I wouldn't like to put a percentage on it, but I made huge improvements over the course of my lifetime.

Please feel free to ask me any questions at all and I will be more than happy to help.

[Ftmz in reply to Paula-38]

Hello paula, thank you very much. One of my concerns is that my mother is 54 years old, and I think that the recovery rate is very low at this age. Is that right?

[N3771 in reply to Ftmz]

So sorry to hear that your mum had encephalitis. Everyone’s experience is different, and so recovery is also a bit of a lottery. Initially things can feel very bleak and it might seem like she is improving only to take two steps back. It has been six years since my meningoencephalitis and I can honestly say that it’s been a rollercoaster of a journey. I think I have recovered well and am feeling more like my pre encephalitis self, but my daughter tells me otherwise. The best advice I can give is to take all the help available, follow up on everything that concerns you, learn to accept the new person that your mum has become, be patient and try to understand where she is coming from and remember she is still your mum and needs your support. It takes time but she will learn to accept her ‘new’ self, there is no time scale unfortunately. Good luck and be kind to yourselves. X

[Paula-38 in reply to Ftmz]

I imagine so.I believe the recovery rate seems to depend on someone's age when they had it.

But also there are people in their 70s I have met who had encephalitis and I believe they have a lower recovery rate again.

Like Kitnaboodle says, I don't know the severity of your mum's case, and I imagine every case of encephalitis is different . I completely agree with Kitnaboodle.

I also don't know what problems your mum is struggling with .

I think two months is still only early days so don't expect everything all at once. I imagine only expect the smallest improvements bit by bit, but I believe it can take time. Has your mum been referred to any more specialists at all for any follow ups?

[sleepless68]

Hi I had the same as your mum October 2020. When I came out of hospital I felt almost like Psd as I d been told I had had a 1 in 3 chance of survival so I was really shaken. People kept telling me I was lucky to be here and I kept thinking why me etc. Physically I wanted to be 'normal' but realised not an option. I was told 2 years after is when you know what you recovery looks like.That was certainly true and in that time I learned strategies to help I.e.when tired stop immediately, write lists to help memory,drink more water,do more light exercise such as walking etc. I work full time and live a normal life now physically as long as I listen to my body and be kind to myself mentally . Hope it helps to understand recovery is different for everyone but 2 years is your timescale.Take care and good luck.x

[Ftmz in reply to sleepless68]

Hello sleepless, thank you very much. Your words gave me hope💙. What were you doing during those two years? What advice do you have for my mother?

[Wygella]

I agree with all the above comments. Just to add that I’m nearly 6 years in. The first 4 - 6 months were hard. Then the first year learning to walk properly again and stop using a stick, dealing with rashes, sleeplessness, absolute brain fog, needing to prop my head all the time and other things were really hard although I know not as hard as so many others. Each year saw a steady improvement, and yes 2 years was one of the turning points but unfortunately one of the rashes went internal and made me very ill and intolerant to certain foods like dairy. (No chocolate!). But also made me lose weight (also common, putting on weight). But my big point was after 5 years I realised I was better than for years. Still need to pace myself but I’m leading an almost normal life and in some ways a better more grateful life. I hope this encourages you and your mum.

[Ftmz in reply to Wygella]

Hello wygella, thank you very much💙. What did you do to improve yourself?

[Wygella in reply to Ftmz]

Good question. I was lucky in that my neurologist stopped the anti-seizure drugs after 3 months because before that I was very nauseous and muddled. I read large print scenery type books to teach myself to read again. And see something beautiful. I listened to story tapes when I couldn’t sleep at night but slept when I could. Went out with my husband in the car just to see further than 4 walls. Used a stick round the house so I could make myself a sandwich and cuppa once my husband went back to work part time. Watched other people walk till I could learn to walk properly. (Took a good 2 years). Pushed myself a little but not too much. Listened to my body and brain when it said enough and honestly just took one baby step after another. I’m a positive person so wouldn’t consider that I wouldn’t improve. Not sure if that helps but it’s been interesting to look back and see what I actually did do! I still have to rest and pace but I’ve just come back from having a coffee with a friend in a cafe which would have seemed impossible for a long time.

[Jackiewaters in reply to Wygella]

Hi , my daughter has Encephalitis, well the doctors are debating either that or ADEM , or Marburg variant of multiple sclerosis, she was badly neglected for the first week in hospital and was found having a sezuire in a room on her own, she slipped into unconsciousness and was then put into an induced coma which she stayed in for 5 weeks , previously they'd placed her under the DOLS act and she should of had 24 hours nurse care , when she came out of the coma she couldn't hold her own head , walk , talk , move her limbs , incontinent , and had to be fed through a tube , 6 months on she is now eating McDonald's, holding a cup and drinking from it , she can move all her limbs and hold her own head but still can't walk and is still in incontinent , there was a point when I believed she was blind but I feel now she can see us , she has become very violent , pinching , scratching us and the only words she will say is a very random swear word , the consultant has said she thinks this is a side affect from the anti sezuire meds so they are now going to wean her off them , praying this stops the violence , it's been horrendous for us and I truly believe my daughter has got encephalitis as after reading all your stories my daughter is very similar xx

[cg511cg in reply to Jackiewaters]

Jackiewater,

I truly feel for all you've been going through and pray for your daughter's recovery.

Just wondering how many anti-seizure medications she has been on? And if the doctors have tried different ones? When my husband was in ICU (for 9 days) with Encephalitis it took them at least 3 days to find the proper med cocktail to make the seizures stop. They did this by having him wear electrodes on his head 24/7 that monitored and tracked the seizures. Once he went 24 hours, without having any seizures, they had the correct anti-seizure cocktail, which he will most likely stay on for the rest of his life. He is on 3 different anti-seizure medications - he takes Valproic Acid (250 MG) 3 times a day, Levetiracetam (750 MG) twice a day and Lacosamide (200 MG) twice a day. In his case, neurology says the risks of going off outweigh the risks/side effects of staying on. He is 68.

Best to you and your family.

[lw1990 in reply to Jackiewaters]

I always thought it was the medication which made my mom so violent and act out of character . Now , 2 years on, I believe it was the disease itself because as the days , weeks , months passed , little by little she began to improve . I don’t think we will ever know because my mom can remember very little of her time in hospital . ( she spent 6 months in hospital , and 6 months in neuro rehab)

All I will say is that the doctors don’t always have the answers when it comes to encephalitis. Looking back , i constantly made contact with my moms doctor to seek reassurance that she would get better, his answers were often very vague and now I know that it was because nobody can understand the brain fully and they can’t give people false hope when they don’t really know the full outcome themselves . I am thankful to say that 2 years on and my mom is a million times better than when she was in hospital . I hope your daughter makes a full recovery . If you ever want to reach out , I am here .

[Ftmz in reply to Jackiewaters]

Hello Jackie waters, I am very sorry for your daughter.🥺 Unfortunately, my mother was very upset and restless during the first months of her illness, but now she is very calm.Be patient, I hope they get better soon💙

[HSE_Survivor]

Hi Ftmz. I had Herpes Encephalitis 11 years ago, when I was 42 . The damage particularly affected my short term memory, energy levels and speech . My consultant said that 2 years would give an idea of my level of recovery. The first year was hard & I was completely reliant on my husband and Dad, as I’d forget to do basics like turning sink taps off . My husband tells me he felt very lonely, as I was silent every night .

The second year saw great improvement thanks to great speech therapy & family support. The support you’re giving to your lovely Mum will be priceless, too.

Recovery can continue after the second year, and I even managed to return to work in the third year, doing a part time admin job. Unfortunately epilepsy put an end to that, as I now have seizures if I work too hard . I’m on a high dose of Keppra now, 1500 twice a day , to control them.

I do feel like my old self , as long as I carefully manage the fatigue & seizures .

I hope your Mum’s recovery continues, too . ❤️

[Ftmz in reply to HSE_Survivor]

Hi Yvonne . Thank you very much. 💙Your words give me hope to overcome this difficulty

[EncephInternational Partner]

Hi Ftmz,

I am so sorry to hear about your mum. Have you come across our website? We have lots of information about Encephalitis on there as well as links to get in touch. We have a support line and email support along with virtual support groups which you can attend on zoom. These allow others who are struggling with loved ones to come together and talk about their experiences.

Our website is encephalitis.info

Please do get in touch and we'd be happy to help where we can and put you in touch with others.

Alex

Encephalitis International