New Here, 1 year after being diagnosed with viral encephalitis

[patch2234]

One year after being hospitalized for 50 days, then another 6 weeks in rehab, being misdiagnosed with Covid for the first 5 days, I am recovering. Had to learn how to walk again,went from wheelchair, to walker to cane. My biggest problem is I get emotional at the craziest things. I cry easily when I never did before. I am on an antidepressant and see a counselor which has been helping. Does anyone else here suffer from this? Any thoughts? Thank you for posting your experiences, It helps to see that we are not alone in this struggle.

[Paula-38]

Hi patch2234,I had viral Encephalitis just after my first birthday so I would have been 2 when I was in your position.

I have been on various antidepressants throughout my adult life because I suffer from profound obsessive compulsive disorder - OCD, and I found one that works and agrees with me. I have also had CBT several times, (but I am currently awaiting more). I have had most emotional after effects throughout my LifelongEncephalitisJourney, believe me I don't think there is anything I haven't had (mentally) but I was lucky enough to be able to walk unaided from the beginning except whenever I picked a bug/virus up etc that would trigger my status epilepticus generalised seizures and I was often hospitalised but after a few weeks I could go home and walk as long as I took my anti-epilepsy medication which I always have done, so I suppose my medication acts a "little bit like a walking stick" but different. It enables me to do what other people without our problems can do. My seizures stopped over 25 years ago now but I still have to take medication for the rest of my life and that is ok.

Please feel free to ask me any questions anytime. I'm only too happy to help everyone on here (if I can) I'm one of the Encephalitis Society's volunteers. 😊

Paula_38

[Paula-38 in reply to Paula-38]

P S I am ever so sorry to hear that you fell ill last year aww. My heart really does go out to you.I should have put this at the top of my previous post but it came back to me after I posted it.

Paula_38

[Gandalf2]

Hi Patch, the recovery from Enc takes a long time, memory loss is very common as is loss of taste and smell and over emotional reactions to small stimuli or mishaps. It may be a year or two until you see a glimmer of light in the form of gradual improvements. Relearning or remembering everyday skills like walking can take less time and may be the first signs of progress.In my case I went from unable to walk to Zimmer frame, elbow crutches and walking stick to unaided in a couple of weeks but things will vary. Shaving and bathing needed concentration and double checking - and who was that fellow in the mirror!

Venturing off the ward or outside the hospital was a challenge unless accompanied. Neurological weaknesses are the most problematic, difficulties with perception, risk awareness, social norms seemed for me to be the weak spots.

It's a hard road at times and getting qualified rehab may mean a long wait but worth it when it does arrive.

I had a pain assessment with a doctor two days ago. It meant a one hour drive, she was 30 minutes late and seemed to skim over my issues, especially the Enc, seeming to decide that because I had not had a seizure for a year that I was cured, despite the fact that I am still on a range of medications.

She recommended that I stop pain relief (morphine) for my spinal injuries and this seems to be working OK.

Although I got the impression that she hadn't even bothered to read my case notes. In future I'll be asking the doctor how old I am, what medicines I'm taking and what my problems are.

When I got home I slept for 26 hours the first day/night and 16 hours the next and was completely exhausted. This seems common with assessments and they can be physically demanding, the journey, and emotionally and mentally tiring, going over the impact of Enc on what was once a normal and productive life.

In my experience in the UK the NHS performs better than the alternative therapeutic options. They were the nicest people I have ever met👍. But there are exceptions and I find there are some NHS staff who can't be bothered and are unsuited to the role.

I hope I haven't gone on too long or been off the point - it's hard to tell - soon you will be an expert and able to advise others, recovery is definitely possible I'm sure.

Best Wishes, G2

[Remos]

Hi patch - It’s been 6 months since I was discharged after HSV enc. I’m not on anti-depressants but I do suffer from depression and anxiety. I often wake up in the morning full of apprehension about what today will be like. It’s like I’m scared of “what’s out there”. Like you, I also easily get upset about things which I shouldn’t. Yesterday, after a long difficult day my wonderful, wonderful wife forgot to put my favourite spinach in the evening casserole, which irritated me. It sounds crazy I know but I couldn’t get the thought out of my head and I started to get emotional and very teary. I just think crying is now part of my healing journey and I’m learning to accept it. I’m on the list for counselling so I’m hoping that will help me.

My advice ( for what it’s worth) is not to fight the crying but to let it come out. I quite often feel relieved after a good cry. So stay with it! We’re all on a journey and we’re going to get there! Making myself feel teary again now🥲.

[Cmiller1971]

My boyfriend got Viral E back in March. He too has little control over his emotions. Definitely cries more and now has a short temper. The littlest thing set him off. He is on an antidepressant, which seems to help. We tried to take him off of it and learned that was a big mistake. Good luck to you in your recovery journey. It’s not easy, but stay strong and positive. All the best !!

[NebraskaTexas]

Hello Patch,

I'm sorry to hear about your illness but I'm glad to hear about your recovery. Sounds like you are moving forward.

I am a caregiver to my husband who had NMDA Receptor Encephalitis in August 2020. His recovery has been slow however he is moving forward.

My husband also cries at any given moment. It's usually when he is thinking of his mothers and other family members deaths. He was very involved with his family however he does not remember that they died. He now knows that they have passed but he is still emotional when he realizes he has no memory of their funerals.

He is also emotional (crying) when I talked about a trip we took and he doesn't remember the trip. I have asked him if he would like for to stop talking about the past and he says no... he wants to hear it about it. The tears swell up in his eyes two or three times a day.

He is on a anti depressant and we also see a counselor. It probably bothers him more than me. I just think of it as part of my new husband.

I just wanted to let you know that you are not the only one this happens to.

Thank care and keep up the good work.

NebraskaTexas

[kitnkaboodle]

Hey, there. The other comments already include a ton of good stuff, so I just wanted to add a couple things:

- I was also misdiagnosed with COVID...kind of. At my first of three ER visits, I was turned away for treatment and told I shouldn't have come and should've just gone through the COVID drive-through testing line because they thought I had COVID, despite the negative rapid test. It is infuriating that the pandemic caused so many people to be improperly treated or misdiagnosed because the doctors fixated on COVID too much. I also didn't receive the extensive rehab that I needed and would have gotten pre-pandemic.

- I have also struggled with anxiety and depression, and all the docs wanted to medicate me for that. I was very emotional and volatile in the first year of recovery. Generally, I refuse to treat only the symptoms. I want to understand and address the underlying problem. I totally respect if antidepressants work for someone; sometimes they are absolutely necessary. I just chose a different path. I make my life as stable, simple, and predictable as possible and surround myself with people (my siblings) who can help support me in that. I focus on the basics: nutrition, exercise, sleep, body awareness and self-regulation, cognitive and social engagement. I also saw a therapist regularly for ten months. Emotion regulation does get better with time, at least in my experience!

You're not alone!

[OldGnome]

Hello patch2234,

Wow, I went through the same phase, too!! There was a time when I was highly overemotional. Certain music or pictures would trigger a torrent of tears. This mainly happened during the first year after getting out of the hospital.

They were not necessarily tears of sadness, either. Just a sort of enhanced depth of perception of the notes, instruments, etc. It is difficult to explain.

However, such emotion disappeared in my second year of recovery. In my 4th year of recovery, I am now a sort of stoic person; I don't have very much emotion at all. I am like Mr. Spock from Star Trek nowadays, just a lot shorter and without pointy ears!!

It is quite possible, that with time, the symptoms that are so bothersome will fade. Hoping that it happens sooner than later for you!! (I would just remember to be very patient with yourself, as annoying as these things can be!)

OldGnome

[Remos in reply to OldGnome]

Nothing wrong with pointy ears!

[Harper1]

Hi there,

I’m sorry to hear about the changes in your ability to manage emotions. Seems to be par for the course with encephalitis, alas.

I’m the mom of a 5 year old boy who was diagnosed with autoimmune encephalitis this summer. He’s recovering, thankfully, but has almost no ability to regulate his emotions now. He’s regressed to the emotional maturity of an infant. Often the slightest opposition (for example, if I pour milk into his toddler brother’s cereal before his, and he has to wait an extra 10 seconds…) will cause an instant-meltdown: tears and anger. In the hospital, during the thick of things, he bit me, and tried to destroy his hospital room. A few weeks ago, his tantrums at home were getting so violent that my husband had to hold him to prevent him from hurting himself or little brother, or damaging furniture. We had to give him an Ativan—which is something I never would’ve imagined having to give a 5 year old in my pre-encephalitis life. But after several hours of hysterical screaming and literally throwing himself on the floor, thrashing and kicking, something had to be done. Thankfully, he seems to be over the worst of it, though his emotional volatility is still 180 degrees from the child I knew, pre-encephalitis.

My son is less emotional when he’s well-rested and not hungry—this is true for all of us in general, I suppose—but it’s even more critically important for encephalitis patients.

All best to you. I’ve experienced depression before (different context, but still dreadful) and wouldn’t wish it on my worst enemy.

[alpappy]

I feel for you and the recovery I feel I have lost everything I used to enjoy. And feel ten years older. It's so hard to try focus on the positive but I do try to. Hang in there it's early days for you I am four years out not all the best Dr Alan papert

[Kate0090]

Hi patch, I had it in 2019 and I'm still suffering with severe depression, anxiety, ptsd from coma. Your emotions will be all over the place, but I hope you have a great support system at home? And know that everyone on here is really friendly and I found it really helpful talking to other people who have had it as it can be hard talking to others, as maybe it's just me but I find that people even professionals just don't seem to get it the after effects etc... and its only talking to other survivors that I really felt understood and not alone. Everyone's journey is different, but know we are here ❤

[Ocean96]

Hi there

I am so sorry to hear what you have been through. You sound very strong and courageous.

Yes, it's very common in those recovering from encephalitis to be emotional, cry, and find everything too much. My psychiatrist in the hospital described it as 'being overwhelmed' and essentially my brain just couldn't handle it as it had been hurt and needed time to recover. I think when you look at it like that with compassion for yourself, it can be less frustrating. I know it's incredibly upsetting and distressing when it does happen but one thing I found useful is breathing exercises. Breathing into 4 and out to 4 and focusing on counting as I do so. Another thing I found helpful was removing myself from the situation. For example, if I was in a loud place, trying to find a quiet space where I can do my breathing exercises.

Just remember, it's completely normal for you to be feeling this way and it will come in waves and that's okay. It's just a part of recovery. Your body is doing its best. I am also on anti-depressants and I see a therapist. It helps me so much.

From my own experience with encephalitis, I think while I was very sick in the hospital I got a lot of support because I was physically unwell however, once I learned how to walk etc I didn't have much support from the hospital which made it really hard. One thing I would suggest is to reach out to your GP to see if there is any local support such as an occupational therapist etc. I contacted the encephalitis society and they helped me hugely and continue to do so. I would highly recommend contacting them. encephalitis.info/support