Brain on Fire: My Experience with Encephalitis
I woke up around 3:00 in the morning after Easter Sunday, with a splitting headache. It was like my brain was on fire. I was in so much pain that I couldn't move. All I could do was hold my head in both hands, while I was curled up in a ball on my side. After a half hour, the headache wasn't any better, but I fought the pain and the subsequent nausea to stumble my way blindly to the bathroom and find something to take for the pain. After another hour, the pain still hadn't subsided, but I was able to fall asleep for a short time. When I woke up in the morning for work, I was still somewhat nauseous, but the pain had disappeared.
About a week later, around 3:30 Wednesday morning on April 11, I woke up suddenly, and at first I didn't know why. I was lying on my back in bed and started to turn over, when I realized I couldn't feel my arms. I sat up in bed, quickly becoming alarmed when I couldn't feel sensation in any part of my body from my neck down. I tried to pick up my phone, and my fingers weren't working normally. I was missing my phone by a few inches and couldn't correct my aim. Eventually, with a lot of concentration, I was able to pick up my phone and call my boyfriend, Justin, back in Pittsburgh. I remember asking if what I was feeling was normal and whether I should call an ambulance, because I knew I wouldn't be able to drive. He was trying to keep me calm but said it wasn't a normal thing to be happening to me. While we were talking, I was sitting on the edge of my bed touching my stomach, trying to will sensation back into my skin. I thought maybe I had slept strangely, and my body had fallen asleep.
Suddenly, I felt what I can only describe as a "zap" travel up from my legs, all the way through my body, until I felt a tingling in my neck that traveled up to the top of my brain. I could feel it happen, and it felt like my brain fell asleep. That was when I started to really panic, and I told Justin that something was not right, that I was calling an ambulance, and I asked him to call my mom to let her know what was happening. I hung up with difficulty, because my fingers were still not working well, and I dialed 9-1-1.
I was able to explain that I was experiencing muscle weakness and incoordination (I'm sure there's a more specific word for my poor aim at picking objects up; maybe an OT would know update: it's "dysmetria"), and the dispatcher said an ambulance was being sent to my apartment. At this point I was still able to accurately state my name, age, and address. As the minutes went on, the dispatcher asked me some more questions and suggested that I unlock my front door. I was able to do so slowly, and I started to gather together my wallet, glasses, and boots to take with me. I eventually was able to pick them up and put them on the table, but I could not, for the life of me, slide my boots on my feet. So, I decided to leave them on the floor and just sit and wait in a chair for help to get there. I did turn on my porch light, so I was still thinking clearly then. I had to hold my phone in both hands, in front of my face with my palms flat, because I began dropping it on the floor. I remember that I apologized to the dispatcher at one point, because I'm sure that was causing loud "bangs" to be coming through on her end.
Fairly soon after I called 9-1-1, a paramedic from the fire department arrived. I opened my door to let him in, and he began asking me identifying questions, questions about my medical history, and about what was currently going on. I remember saying I had a history of migraines, but had very few now, and they never presented like this. He took my vitals and blood sugar, and then he asked me what I ate for dinner the previous night. I could remember sitting on my couch eating dinner, but I was drawing a huge blank about what I ate (for the record, it was a veggie burger and kale salad--I made sure to think back on it later because it bothered me so much). I had to tell him that I just couldn't remember, and I think I laughed a little because it seemed so strange that there was a gap in my memory. Around that time, the EMTs arrived with the ambulance. One of them was my co-worker, and we kind of went, "Oh hey, nice to see you in the middle of the night." I still had no idea how severe my symptoms were about to get--and quickly.
One EMT said that she thought it was a good idea to get me to the Emergency Room, and she asked if I thought I could drive. I kind of felt out my body and still couldn't feel much sensation, so I said no. The EMTs basically said at the same time that it wasn't a good idea for me to drive, so at least we were all in agreement. Ha. I was helped to slide on my boots, grab the items I had placed on the table, and was supported to the ambulance by my co-worker in a cold rain. The rain didn't bother me, so either I couldn't feel it much, or it just felt good at the time. The sensation in my body may have been coming back slightly, but I did have a brief moment of vision loss like I was getting a migraine. I'm assuming it was from the stress of the situation, and it quickly went away. By this time though, I was getting pretty confused. I was helped onto the ambulance, and it took me quite a few tries to get my seatbelt buckled because of my incoordination.
I wish I remembered whether they turned on the lights or not, but I'm pretty sure there was no siren. Not that I noticed anyway. I was sitting in the back with one of the EMTs, and she continued asking me questions to keep me talking. For a minute or two anyway. I noticed my speech was very slow, and my words were coming out wrong. I knew what I was trying to say, and all my thoughts were making sense. But when I tried to talk, different words were coming out. I had to think about and say one word at a time, correcting myself when it came out incorrectly. I kept giving the EMT a look like, "I know this isn't making sense." I was experiencing both aphasia and dysarthria. And it was terrifying, because I was aware of it.My first thought was that I was having a stroke. I hadn't looked in a mirror since I woke up, so I didn't know if my face was drooping. This was the point when I became absolutely terrified. The EMT noticed and tried to reassure me that I was not presenting like I was having a stroke. All I knew was that something was very wrong, and for the first time I thought I was going to die. I broke down crying in the back of the ambulance.
After what felt like the longest 7 minutes of my life (I live pretty close to the hospital), we arrived at the ER, and my co-worker helped me down from the ambulance. I was led to a room in the ER and helped into a hospital gown. The doctor came in to see me, and I began laboriously trying to explain what was happening. She listened very well and let me speak, even though I was doing so with lots of attempts at self-corrections, and probably not making a whole lot of sense. Though I did make sure I corrected the EMT who said I had dysphagia by eventually stringing together, "I'm an SLP, and I have dysarthria, not dysphagia." Always trying to educate, apparently.
The doctor was saying I might be having a severe migraine, and they would give me pain medicine and anti-migraine meds to see if the symptoms resolved. I remember attempting to explain that I am very sensitive to pain meds and that they make me sick, though I'm not sure if that came out clearly. I do know that I was able to say that I wanted an MRI, because it took me a very long time to say those three letters. I was also asked what time I had called for an ambulance, and I said somewhere around 5:30. They told me that it wasn't even 5:30 yet, and I looked at them, stumped. The time 5:30 felt so right to me, but I had no idea why. I figured out later that when I called Justin, I was calculating what time it would be in Pittsburgh, because I felt bad for calling in the middle of the night and waking him up. When I realized it was 5:30 his time, I didn't feel as bad, because he would be waking up soon for work anyway. So, you know, I was just in the wrong time zone. I was given the medications through IV (and, I found out later, was also given anti-anxiety meds which were neither effective nor wanted) and left in the hospital bed with the lights turned off. My eyes were extremely sensitive to the lights, so that was appreciated. I had an IV in both arms, and my blood had already been drawn a few times. I thought the nurses or the doctor would come back, but I was left alone. I couldn't fall asleep, because the head pain had started. It became so severe, that I rated it at a 9/10. It is so rare for me to rate pain higher than about a 6. I only stopped myself from rating it a 10/10, because I always figure it could be worse. The pain meds did nothing to help though, other than to upset my stomach more. And that's when I started throwing up. I hadn't eaten since dinner the previous day, so it was all bile like the week before. I started getting sick just about every half hour. I had asked the nurse to inform my mom about what was going on and to call my boss once it was time for work, to let her know that I had been hospitalized.
My mom and Justin were both calling me and calling the hospital to try to reach me and find out what was happening. Eventually, they began telling my mom the details because I had asked them to, but they were also telling her that they were treating this as a migraine and that I was resting comfortably. Let me tell you, I was not resting comfortably, and if they had told me how to call for a nurse at some point, I had forgotten where the call button was. I was in awful pain, and I tried calling out for a nurse, but I wasn't heard. I ended up, at one point, getting out of bed and walking out to the nurses' station, where the nurse was on the phone with my mom. She tried to hand the phone to me, but I told her I was going to be sick and proceeded to start throwing up. It definitely got her attention. A little while later, I tried looking for a nurse again, but there was no one at the nurses' station. I tried to make it to a garbage can in the room, but I ended up getting sick half on the floor. After those incidents, they started keeping a closer eye on me. I think they began to realize it wasn't just a migraine. I'm not sure how many times I got sick that night, but I remember at least 4 times. And I kept saying "MRI. MRI." I had been told by both my PCP and eye doctors back in Pittsburgh that my migraines were normal, but if my migraines ever changed, to get checked out right away. So even if what was happening was a migraine, I still wanted to be tested. But I knew something was very wrong, and I couldn't have slept, even if I hadn't been in excruciating pain.
Around this time, I briefly talked to my mom on the phone. She later told me that I didn't even sound like me; she thought she was talking to a little kid and that the nurse had given her to the wrong patient. I still had aphasia; my language was all jumbled. At one point, my mom told me that she loved me, and I responded with, "Thank you for saying that." I'm sure that's not what I was trying to say. I had tried to text Justin back too, when I could stand to look at my phone's light long enough, and when I could correctly swipe my password (it took a few tries). I spent, quite possibly, more than 30 minutes typing out five words to him which, while I knew they weren't exactly correct, I felt confident conveyed my message: that I was still in the ER. My text read, "Sign sob strut trip art." Needless to say, I completely freaked him out.After my symptoms were persisting, and even getting worse, the doctor finally came back and told me that they were going to give me an MRI. The doctor had apparently also told my mom this when she called, and said that they were going to do this really expensive test for my peace of mind. I didn't care--after they told me they were getting the test set up, I finally let go of controlling my brain enough to somewhat function. I felt like I could finally sleep. I'm sure I had been fighting against all the meds as they began to take hold too. I passed out quickly. I awoke to the nurse getting me ready for the MRI, and I asked her if I could use the bathroom before we went to Radiology, because I had had to go since I woke up at home, hours ago. She helped me into a wheelchair (which I had some difficulty getting into), and wheeled me down to Radiology. We were close to the bathroom when she told me that I would have to change into a different hospital gown for the MRI. The one I was wearing had metal snaps. I was still very confused and didn't know where I currently was, so I said, "okay," and started to pull off the gown I had on. I think I mortified the nurse, because she tugged my gown back down and said, "Not yet." So apparently, I wasn't even aware that I was trying to change in the middle of the radiology department.
During the MRI itself, I was actually the most relaxed I had been up to that point. First of all, the meds had made me extremely loopy (in addition to my already confused and disoriented state). I was lying on the machine, and looking up at a pretty picture of the outdoors, totally content. The machine started up, and I was out like a light. I tried, but I couldn't stay awake. I apparently jerked a bit while I was sleeping, because the nurse had to come over and tell me to stop moving. I told her I would, but my eyelids were so heavy, I just fell right back to sleep. Second, I was so relieved that I was finally getting an MRI, that I let go of all the strength I was using to stay focused and communicate what I needed. There was no keeping me awake.
Eventually the MRI was completed, and I was wheeled back to my room. I finally was able to look at the light on my phone and correctly figure out my password on the first try. I texted Justin a message that made sense this time, even if the spelling wasn't all correct. Then I fell right asleep. I was soon woken up, because I was lucky enough to need a spinal tap in order to confirm the findings on the MRI (which I later found out was a small lesion in my left ventricle). The spinal tap was a blur. I know the physician came in and talked to me for some time about what he would do, along with the risks and such. I don't entirely remember, because I was falling asleep as he was talking to me. Going through the spinal tap didn't even faze me at that point. I was so out of it, feeling so sick and so tired, that they could have done anything to me, and I would not have cared in the slightest.
After all that, I was given the diagnosis of either a bacterial or viral induced encephalitis or meningitis. I was immediately started on antibiotics and antivirals via IV. As soon as I was hooked up to those, I began to feel better. I became less confused, my dysarthria was resolving, and my language was returning to normal. I received a lot of comments over the next few days about how quickly I turned around. I also received more than a few comments about being a speech-language pathologist who lost her speech, which I did not appreciate. I see the irony, but at the time it was not funny--it was terrifying. I ended up being admitted to the hospital for the IV medications and to wait for test results to come back in order to determine exactly what caused my issues. Turns out I had a virus, most likely a norovirus or flu, that my body didn't fight off entirely, and it somehow entered my spinal fluid and got to my brain, causing the encephalitis.
Unfortunately, viral encephalitis does not have much research behind it, because it is such a rare occurrence (affecting an estimated 3.5-7.4 per 100,000 people each year in the US, according to the article below). Most people do not have severe symptoms. And most people fight off the virus naturally. However, there is no typical recovery path. From posts I have seen on blogs I've happened to come across in my search for more information, some people are still having after-effects (migraines, poor concentration, memory loss, etc.) over 12 months after the incident occurred. So far, I've been lucky. For about a month after I was hospitalized, I had increased fatigue, disrupted sleep patterns, poor concentration, difficulty with memory, lingering speech production and language errors, vertigo, tinnitus, and painful headaches. Now, almost 6 weeks after I went to the ER, most of these symptoms have resolved. I still become tired more often than I used to, but I feel about 95% back to normal.
I'm very appreciative of my family, friends, and co-workers, who have all been supportive and understanding as I have been recovering from this horrible experience. All I can say is that I'm glad I called for an ambulance when I was still able to, and that the cause of my symptoms were figured out and treated before they became more dangerous or permanent. If one good thing came out of all of this, the experience has certainly put things in perspective for me on what's truly important in life.
For more information about viral encephalitis, check out: https://reference.medscape.com/article/1166498-overview
For more information about communication disorders, visit: https://www.asha.org/
Picture credits:
livescience.com
youtube.com
mybrainllc.com
aphasia.com
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