Hello, It’s been just over two years since I was first diagnosed with viral meningoencephalitis and I finally feel like sharing what I can remember from my story. Please bear with me as I am still confused about a lot and don’t remember much of my experience from the hospital.
Doctors were never able to find the exact cause but suspected it was due to an Enterovirus. It all started back in Sept. 2016 we were preparing to move to our new place in about a weeks time but I started to feel very sick. I figured I must’ve just gotten the flu, food poisoning or just a really bad cold. Moving day came and I felt so weak that I couldn’t even lift a single box without feeling light headed. For the past week I already had been experiencing diarrhea, vomiting, nausea and sore throat. I always had perfect health growing up so I never suspected that it could be something this serious and honestly I really had zero knowledge on things like this. Anyway, after laying in the moving truck trying not to vomit, my family finished unloading the rest of our things. I also was starting a new job the next day that I was really looking forward to and wasn’t going to call in sick. I actually felt fine all night and that morning and thought I would be ok for the day. However after just 20 mins I started to vomit again. I felt so nauseous that I didn’t even feel safe driving home and had to have my mom pick me up. From there we decided to go to the walk-in clinic and in the waiting room I had the worst cold sweats I’ve ever had in my entire life. I was freezing cold but was also dripping sweat from my forehead it was awful. The doctor took my temperature and I don’t remember what it was but I remember it being remarkably high. She tested me for strep throat, which was negative, and sent me home with antibiotics just in case. After a day I had become very sensitive to light so we decided to go to the ER. In the waiting room I was wearing sunglasses and had a bucket with me because I was vomiting so much. I remember them taking urine, blood, stool and saliva samples but still could not find the cause of all of this. I then started to have a seizure so they moved me into a room upstairs. From there everything just went downhill incredibly fast. I had a raging fever, I started to hallucinate, and say things that didn’t make any sense. I would try to eat my phone, I would confuse people for other people, and I kept thinking I was in different places. My family described me as acting as if I had the gas that people get when they get wisdom teeth surgery. I know it sounds funny but it was very frightening for my family. I also became violent and was trying to hurt myself and other people so I had to be tied to the bed and had nurses stationed at my door just in case. I then started to speak gibberish and slur my words, had another seizure and slipped into a coma. It was then recommended by family and other doctors to have me transferred to SickKids Hospital downtown. When we arrived I was sent straight to the PICU and was intubated. Doctors performed all types of tests on me; MRI, CT, EEG and lumbar puncture for spinal fluid. Through these tests they saw that the outer lining of my brain was inflamed, as well as my eyes, liver, spleen and spinal cord. Doctors even found a heart murmur that they said was most likely caused by the virus as in severe cases the virus can affect the heart. They were testing me for every disease in the book, HIV, Herpes, West Nile, Smallpox, Polio, and Measles but all were negative. Thankfully through the LP they were able to diagnose me. I woke up from the coma 3 weeks later one day after my 18th Birthday and was transferred from the PICU to the paediactric infectious disease wing of the hospital. I found this very funny because I was 18 and in a paediatric wing with children 6 years old and under. Afterall I was in one of the best children’s hospitals which I was lucky enough to get into because I was still 17 when admitted. Anyway, when I woke up I had lost a lot of memory and was confused about a lot of things. I had trouble keeping my balance when walking and standing up and I was still very sensitive to light. I had a raging headache that never seemed to go away no matter how much morphine or naproxen was given to me. Doctors then said the best form of treatment was a form of steroids but the risk was that it had a small trace of ketamine in it. We went through with it anyway and thankfully it worked and the swelling went down in all affected areas. Unfortuanetly this hardly helped with the headaches. Another MRI was needed to see if the swelling had in fact gone down and I was not able to do it due to claustrophobia. The moment I was inside I started to panic and had to be taken out. The only other option was to sedate me which was fine until after I came out and I went into another episode of hysteria and pain. Doctors said that the anesthesia used reacted badly with the ketamine in the steroids and also my brain being so fragile didn’t help. I ended up spending another 3 days in the PICU to monitor me. I was then brought back to my room upstairs were I stayed for another week until I was discharged. In total I spent 2 months in the hospital and that’s not even including all the follow ups that I still go to until this very day. Two years later, I still haven’t gotten my memory back and probably never will, I still get headaches but only when triggered by bright light or loud sounds, and I still sometimes get a stiff neck but it’s not as often. These are all things that I’ve learned to accept and live with but one thing that I still struggle with is confusion and short term memory loss. I get confused so easily now and my family says that I must be from this because I was never like this in the past. I was known for being the one with best memory in the family actually. Now I get lost and confused driving in a city that I grew up in. I hope someday I’m able to recover completely so I can live my life how it used to be.
Thank you for letting me share my story and if you have questions or would like to share your story please don’t hesitate. Wishing you all positive spirits and good health!
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_Zodiac95
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Hi, I must commend you on your storey and the very real description of what happened to you. Are you still having balance and problems with dizziness and if so are you taking any form of medication or receiving any other treatments?
Hi there, I haven’t had any problems with balance but I still sometimes struggle with dizziness. I am no longer taking any type of medication or receiving treatment. Doctors have told me that damage is most likely permanent and I’ve accepted that. I do sometimes take naproxen for headaches when they get really bad.
Thank you very much. I’m staying positive that maybe someday in the future I’ll fully heal. I’m glad to hear that you are recovering and that you have your daughter to help get you through it. Blessing to the both of you always.
I like your attitude and your outlook on life 💖. To be so young and to have overcome so much.
My best friend continues to badger me about things I said while in an "altered state of consciousness." Apparently I warned her to leave the hospital quickly as "they" were rounding up Mexicans to roast in the local baseball stadium's ovens. I don't even remember seeing her, much less spewing such nonsense. Someday I will laugh at this.
Thanks so much. I also said some pretty crazy things myself and I’m just glad no one was recording me lol. I was hallucinating that the nurses in the room with me were smoking joints with snoop dogg and they were doing French inhale tricks lol. Clearly we were both not in the right state of mind. Hope you are recovering well!
I agree with earlier posts...you have articulated your story very clearly. Your writing reflects how well you are doing! VM is no joke though, and we are all so happy you got through it. I don't think anyone expects to go through something like this, and it's "hard to wrap your brain around" losing control of your body and mind so suddenly. To a virus....
My experience was similar but at 52, I'd already seen some other crazy health scares, although not to me personally. 18 is very young to go through this kind of trauma, and it is traumatic. At your age, the brain is still forming, so there might be some good self care, or practices, you could do to support your brain health. There may be a brain injury support group that could be helpful...
Take care of yourself sweetheart. A slower pace may be frustrating, but there may be some rewards along the way too.
Thank you for your kind words. I’m sorry that you had to experience this too. I always try to stay positive that hopefully I’ll recover completely but unfortunately that’s all I can really do, hope. I’ve given up on the cognitive therapy after a year and a half but maybe I’ll try again someday. I haven’t done any type of group therapy as I’m not the type to open up to people let alone a stranger. Especially after the illness my nerves are crazy and I find myself getting nervous and very anxious at little things such as ordering food, crossing the street, and sitting on the subway are to name a couple. I can only imagine how I’d be with a stranger and being asked questions about myself. I find this easier as there is no face to face interaction.
Wish you all the best on your recovery, blessings to you always!
Hi there..similar to mine i had bacterial meningoencephalitis 2 years ago..two times seizures and had coma for 3 days..lucky i had no short term memory lost.,based on reading through this thread usually they were received a late treatment that lead the major problem. Most of GP they might not do for LP because the sickness probably just a normal sick example u just might have a fever and told to go back and rest at their homes..,when case became to worse than they will test for LP.,at this stage your brain totally become inflamed and much damage occured..thats why we heard people get more permanent disability compare those who received an early treatment..for me the best key cure i can tell you is only rest, rest and rest...others is not a major contribute..take care of yourself..
I also was diagnosed with meningoencephalitis in Sept. 2016. Contracted from West Nile virus and confirmed with a lumbar puncture.
I spent 10 days in the hospital of which I have memory but I was apparently not in a coma. I was cognizant and even communicating but I dont remember anything avouy those 10 days until I got to an inpatient rehab facility.
It has been a long road back and I had many of the symptoms you mention. I also had trouble getting diagnosed and it took 3 ER visits (told to go home and take tylenol for the fever, it was "just a virus)
I am posting to wish you the best in your recovery and to say do not give up any therapy or routines that help you make progress no matter how slow it seems. I was told that whatever symptoms remained after about a year would be permanent. But this is not the case.
Two and a half years later I believe I am still making gains in my balance and my headaches have become much less frequent. My light sensitivity is not noticeable although I still over react it loud noise. I still have occasional days where I feel I pushed too hard and end up with an energy crash.
However, I am much better than I was even from last year. The progress is not as dramatic, but it is still there.
Keep working at whatever remains a challenge. I am much older than you and you have youth on your side. I was a marathon runner before I got sick and i don't run like that anymore, but I believe my fitness level saved my life and I am grateful for my little 3 milers 3 times a week. I am grateful to be here at all😊
Hi Zodiac. Am not an MD, but it sounds as if you had encephalitis AND meningitis. I also had both. I was violent, thrashing, etc and they put me in an induced coma & intebated as I wouldn't stay still for tests. When they revived me they had me on heavy sedation meds and anti seizure meds. I also was awake and have no memory of roughly 8 days. My physiatrist told me my brain didn't record those memories and those days are gone. It still freaks me out. The seizures, violence and gibberish are not symptoms of VM. Did they send you to a seizure/epilepsy neurologist? Am going in a couple of weeks for monitoring. I truly hope you are doing well. Our stories are very similar and I feel less alone.
yes, "viral meningoencephalitis" is what Zodiac had which is encephalitis AND meningitis. Seizures, violence and gibberish ARE symptoms of vm. In fact, for zoster varecella meningitis, which is the kind I had, those 3 symptoms are very common and they tend to find that type because people come in and doctors think at first that it is a mental health case initially. People behave irrationally, violently, say things that don't make sens and are hallucinating. So much so that they actually found it strange that I was being so calm and carrying normal conversation and speech. However, I was hallucinating and, even though they couldn't tell, it was extremely difficult for me to talk.
I am so sorry that you went through such a severe bought of this with so many lasting sequelae! You provide a very clear explanation of your experience so it is very positive that you still have that level of communication ability. This is a scary and really impactful illness. It is a long road to recovery and it feels very slow at times. Perhaps some of these effects you will always have but it will also be nice to see if, in a few years, you have some great progress in other areas. The lasting effects are so strange and it is weird to not feel like your previous self in a lot of ways. It seems like the after effects of mine are so numerous that some of them I don't pay a lot of attention to until I read them from someone else and go, "oh yah, that's happening to me too." Some of them I get to say, "Oh, I'm glad I don't have that one anymore." Be nice to your body and mind and I wish you the best in recovery.
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