Hi.
I’m new here having come to the party late 😜
In February 2018 in was hospitalised with a mystery illness that kept the doctors guessing for quite a while. I was initially diagnosed with encephalitis but things didn’t quite add up and after lots of tests I was finally diagnosed with meningitis and encephalitis caused by the varicella zoster virus ( chicken pox)
Is there anyone else on here that has also been diagnosed with meningoencephalitis?
I had encephalomenigitis in 2015. I was hospitalized for 1 month in a dark room as I could not tolerate light and sounds. It took 2 weeks for them to diagnose. I spent 3 months for home recovery. I remember having pain in my neck, back and legs. As well as severe head pain. How I got it? Not sure. It has changed me I can't work 8hrs a day any longer, loud sounds & bright lights bring on anxiety. I have 3 areas of my brain injured so I have issues with short term memory, lose my cognitive if I work long hours and balance issues. Despite these issues I know my limitations and am able to somewhat monitor my issues and adjust my life. I wish you well, listen to your body.
Thank you for the reply. Your experience sounds all too familiar! I spent my time in hospital wearing sunglasses and thank goodness for eye masks.
I had to take early retirement from my work as a dance teacher and I’m often overwhelmed by crowds or noise. Panic attacks and migraines are a huge problem but I take each day as it comes and only do what I can.
yes! When I was 7 years old, I was hospitalized with a mysterious illness that caused right side spastic paralysis. I could not speak or walk in a straight line. Doctors eventually said it was most likely meningitis and encephalitis, and that it was probably caused by the chicken pox virus (I had had chicken pox the previous month). Are you suffering from any residuals?
Hi. I’m suffering from migraines and anxiety really. I have up days and down days and some pretty awful panic attacks which can throw me off kilter for months. At present it’s crowded spaces and noisy environments that floor me!
Hi there,i just want to share my recovery (some good news at least!!) i got diagnosed viral menintigitis in march and it took until this week (beginning of july) that i have pretty much no symptoms at all anymore.i also had panic attacs and aweful anxiety and weird feelings over the last months,sometimes took tavor i had the feeling of not having control over my body (high blood pressure,head pressure, feeling of numbness,anxiety) it took a while but now it s all gone!!! Only office work makes me feel a bit sick and i cannot handle crowds of people at thr moment as the feeling of anxiety comes back.but i think it takes many months until it s getting better.i am glad i can live a normal life again and i pray for all of you out there to fight meningitis!!!!
yes I had that back in 2011. I was initially diagnosed with meningitis but after a week in the hospital they had my spinal fluid in a Petri dish and they looked under a microscope and found out it was encephalitis with meningitis caused by being exposed to the chicken pox virus. They had put a PICC line in my arm and sent me home with acyclovir and a home nurse to come everyday. I too had to be in the dark and it felt like I was living in a fog. I was given an MRI and the dr said it is a miracle I didn’t have brain damage from them taking so long to get me on acyclovir. Scary! Then in 2015 I got meningitis again but it didn’t turn out to be paired with the encephalitis. I was told I would never have meningitis again and then 3 years later it happened! I’m always on edge about catching it again. After second bout I’ve been tired, more headaches and brain issues. No doctors know about what to do or even believe you though. I pray your full recovery! This disease is no joke!
hi I was originally diagnosed with encephalitis and my last and only neuro appointment then said it was a mix of meningitis and encephalitis too. To this day I have no confirmed diagnosis.
I was nurses in a general ward and as staffing was poor I was not treated well at times. My speech was incoherent, mobility poor and my behaviour erratic. They said I also had delirium.
I’m suffering with fatigue and headaches and some difficulty processing information. Had little help at work and doctors don’t understand. But I am still here! So happy to chat with folks experiencing difficulty too. Perhaps we can problem solve together!
Hello. I am nearly 65 and I also suffered from meningoencephalitis from the chicken pox virus 2 years earlier. I too suffer now with daily headaches and aura every couple of weeks. I haven't been back to work as I am muddled and stressed and very anxious. I too have had to wear sunglasses in hospital and even now have to wear glasses with a tint in the lens. Noisy places I avoid and meeting new people.
New learning has been affecting me also.
My life has changed so much. I suffer with incontinence, my right eye doesn't focus properly. I must have had 4 pairs of glasses in the last 2 years. I seem to be dyslexic now where I wasn't before my illness.
I am on low dose Aciclovir tablets to keep my shingles flares at bay.
I hardly function mentally after about 1pm every day as I am so fatigue 😩
I have also recently discovered that I have some heart issues which has come as a shock to me as I try to keep slim and fit. I wonder if all of this is from my illness.
Looking on the bright side. I am thankful I am alive.
I have not reached out before so I hope to chat with some of you from time to time.
thank you for reaching out. I’m sorry that you too have been affected by this awful condition. I suspect that the heart issue might be a result of the meningitis, I had a heart scan but the results were good for me, I’m sorry to hear that you have so many resulting problems. They discovered that I have severe small vessel disease in my brain which can lead to strokes, heart issues and dementia I believe. Just something else to worry about.
I would add though that six years on my ability to learn new things has improved slightly but it’s all about repetition repetition repetition. And the brain fog and fatigue are also not so bad. My concentration, drive and use of ‘foul’ language however have not improved,I’m still somewhat impatient with other people.
I’m not sure what part of the country you are in but I live in the south and the wonderful countryside is great for mental health.
Thank you for replying.
I live near canals and rivers and walk my dogs there early in the morning when most people are still in bed. That way I don't see many people 🙂 which is a good thing.
It's a good time to let your mind rest and enjoy the views. I am in the east midlands and my husband and I hope to move further south next year. Being on a waiting list for this and that since the meningoencephalitis has slowed down our plans.
The small vessel disease sounds scary. Are the doctors keeping an eye on you ?
I know what you mean about not seeing anybody being a good thing…..I went through that stage just as COVID hit so it was a godsend that everyone stayed at home and I could walk my dog without meeting anyone. Sadly I lost my dog two years ago but walking on my own is still brilliant for my wellbeing.
The small vessel disease hasn’t been followed up but I suspect the medication that I’m on is keeping it contained. 🤷🏻♀️There doesn’t seem to be any following up at all unless I approach them which is easier said than done. When I asked for help with my mental health I was just offered CBT which really didn’t work for me the first time when I was getting suicidal thoughts. The dr passed me on to the wellbeing service who just gave me a list of ‘low cost’ places. When I looked at their sites it was so confusing as I know I need to see someone but it’s all so confusing!
So sorry to hear about your dog RIP. Both our dogs are 8 years old. It's a shame they have short live spans compared to us.
I understand where you are with the mental health. I managed to get six weeks of talking therapy which didn't really help. Six months later have asked for more help or a different approach like CBT. The waiting list for this is about 48 weeks. I think I'm halfway through that time scale. It's a nightmare.
It's like my brain works totally differently. I used to be so organised and knew where everything was in the house. This stresses me out and I start panicking and end up with such a massive headache. The smallest thing tips me over the edge.
Mollaret's Meningitis. 
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