Age: 74.0
Sex: F
Vaccine: FLUA3
Symptoms: Back pain, Balance disorder, Bickerstaff's encephalitis, Blood test normal, Computerised tomogram normal
Clinical narrative: November 10, 2016-Flu shot. November 19, 2016-1st ER visit. November 20, 2016-ER, and then admitted to Hospital. November 23, 2016-Diagnosed with Bickerstaff's Brain Stem Encephalitis by Dr. November 29, 2016-Transferred to Inpatient Rehabilitation. December 5, 2016-came home. December 27, 2016-Back to hospital with a blood clot in left leg. Also relapse of the Bickerstaff's Brain Stem Encephalitis-much worse this time. December 30, 2016-Blood clot resolved, but Encephalitis back worse than ever. Had a panic attack, and absolutely insisted on going home. January 25, 2017-Physical Therapy and Occupational Therapy for 6 weeks. Current problems: Still have double vision, tire much more quickly, my hands still shake, short term memory very poor, my ankles tend to swell, poor balance, continue to have nightmares and wild, vivid dreams, headaches regularly. When I drove home, almost a year ago now, I never imagined that in less than two weeks my life as I knew it would change forever. Little did I know that my mind would diverge into a strange and scary alternate universe, and my body would fail me in ways I could not ever have imagined. Two MRIs, several CT scans, a Lumbar Punch and endless blood work would not yield the answers to what was so very wrong with me. I was "presented" to 13 neurologists, to see if they could figure me out. They asked a lot of questions-had I been sick, had I run a high fever, had an infection, anything? And my answer was always no, nothing at all had happened. Except I was obviously very sick. I could barely see, I couldn't walk by myself, I could hardly stand. I was terrified by what was happening to me! I was 74 years old, very independent, happily married, with three children, many grandchildren, and two great grandchildren. I had been strong all of my life, both mentally and physically. I grew up in a family business of entertainers. In addition to entertaining, I was a dental assistant and eventually a lady truck driver of big rigs, with my husband and I each driving our own trucks. I had been blessed with good health, thanks to the good genes inherited from my family. My parents lived into their mid-nineties, my grandfather lived to 101, and my great grandfather was doing well until he fell and broke his hip at the amazing age of 103. I was happily living my life. The only thing that I had done recently was get a flu shot on November the 10th, at pharmacy. I was taking care of some business for my parents' estate. I always made a point of getting flu shots, to protect my parents, since I was very involved in helping them for the last several years of their lives. So it was still just something that I did. Little did I know that this time, this particular flu shot would change everything. Those first days in the hospital, everyone was so kind to me. But they saw a broken, disheveled old woman. My hair is long and I couldn't comb it. I faithfully brush my teeth twice a day, but now I often couldn't manager it at all. I usually wear a little makeup, but now I couldn't see my face to put it on, not that it mattered, since I was too shaky and tired to do it anyway. I started having hallucinations. The first time it happened as I was being taken outside in a wheelchair, to where I was getting my second MRI. We were going through a bumpy parking lot and the sun was shining brightly, so I closed my eyes. All of a sudden, I was riding down a beautiful river rock-lined road, with trees and flowers, and lots of beautiful, lush green grass. It was filled with color and a complete picture. As I would turn my head to look from side to side, it would change exactly like I was really there. I opened my eyes, and we were still going through the parking lot. I closed my eyes, and I was back to this beautiful setting of trees and flowers. When we got to the MRI building it stopped. I thought that was very strange. But everything was strange right now, being so helpless in this very difficult situation. It seemed hard to believe that less than two weeks before I had been driving by myself almost 400 miles home. For the next few days I continued to have these beautiful hallucinations, and each one was different. They would sometimes last for hours at a time. It only happened when I was awake, there was light above my head, and both of my eyes were closed. The next one-I was on a stage in an old vintage theater, looking out at the empty seats. Since I entertained for part of my life, this was a familiar scene. There were wooden armrests between the seats. The seats were upholstered in a beautiful plush deep red velvet. There was the center section, with an aisle on either side, and then the side sections of seats. I started describing them to my husband, who was sitting next to my bed. I could open my eyes and be back in my hospital room, but every time I would close them, I would see this. Just like the first hallucination, I could turn my head from side to side, and my view of the theater as I stood on the stage, moved to correspond with which way I was turning my head. The next hallucination looked like a beautiful soft fur underbelly of one of my cats, complete with a nipple. The fur area was huge, completely covering everything over my head, almost like a big furry cloud. It was breathing-in and out-in and out. And it was so close that I felt like I could reach up and touch it. The one after that reminded me of beautiful, colorful sea anemones, ebbing and flowing in the water, except there wasn't any water. When I was eventually transferred to the Inpatient Physical Therapy Unit of the hospital, there was a large picture hanging in one of the hallways just down from my room, and it was filled with sea anemones, exactly like the ones I saw in my hallucination. But I had never seen the picture on the wall before. These hallucinations were never scary, they transported me to wonderful, euphoric places. But outside of these beautiful hallucinations, I felt like I was descending into a black hole, an alternate universe of hell. The walls were closing in, I couldn't tell if it was day or night. Instead of being in a hospital bed, I felt like I was laid out on the top of a coffin, which was sitting on a pedestal platform. I could see the big analog clock on the wall if I covered one of my eyes, but I couldn't tell what time it was. They were taking blood from my arms over and over. I was so weak, I needed a walker and someone to help me up, to get to the bathroom. I was so nauseous I couldn't eat. I was in such a dark, dark place. One of the 13 neurologists from when I was "presented" took a special interest in my case. He regularly came to assess the strength in my arms and legs, trying to figure out what was wrong with me. I told him about the hallucinations, worried that he like I, would think I was losing my mind. I was surprised when he was very interested in them. It turned out they helped him make the diagnosis. On Wednesday afternoon, my fourth day there, he came in and said he thought he knew what it was. He asked me to stand and take a step. I tried, but I fell backward onto the bed, which, it turned out, was what he was expecting me to do. He said he thought he was on to something, and he would be back. A few hours later he returned, to tell me that I had Bickerstaff's encephalitis, which I had never heard of. I asked him if he had ever diagnosed that before, and he said no, and because it is so rare, he never expected to see it again. I asked him if he thought that it had been caused by the flu shot, and he said yes. I was started on an IV drip of IVIG (Human Immune Globulin Intravenous), which caused intense, increasingly painful headaches, until by the fourth day of receiving it, I was holding my head in excruciating agony, quietly crying for several hours straight. They couldn't give me any more pain medication. I truly thought I was going to die that night. I will never forget the loving kindness of my nurse, who gathered me in her arms and just held me, telling me that I would be okay, patting my back, in an effort to comfort me. Eventually, I did get well enough to go to the inpatient physical therapy unit, where I worked on getting some of my strength back. I still had terrible massive, headaches, double vision, and I couldn't get out of bed by myself. I needed pain medication around the clock, and COMPAZINE to help with the nausea that was caused from my double vision. I found myself saying really strange things to people, and not being able to think of the words I wanted to use. The Occupational Therapist worked with me on that. Finally I got well enough to come home. I had been in the hospital for over two weeks. I came home on December 5th, still feeling very weak and shaky and still dealing with the double vision. I was spending most of my time in bed. I couldn't drive, and I needed help getting around. I went to a lot of doctors over the next 3 weeks, one of them being my GP. When he first came into the exam room he said to me-"When I was in medical school, we were told that if you hear hoofbeats, think horses not zebras. Well my dear, you are a Unicorn!" I was still taking pain meds around the clock, needing COMPAZINE for my nausea from the double vision, feeling very weak and trying to recover. I almost collapsed trying to take a shower, and my husband had to help me out and to a chair. My long hair started falling out by the handfuls. Life was difficult as I struggled to recover. Until I got sick, all of my kids and grandkids were planning to come to our house for Christmas. Now I couldn't possibly handle that, so my son and daughter-in-law took over that event for me. By Christmas I was feeling weaker instead of stronger. December 27th I was scheduled for a mammogram, but by the time I was ready to go, I couldn't get out to the car without my husband almost having to carry me. So, we went back to the hospital. I was admitted with a blood clot in my left leg, probably a result of spending so much time in bed the previous three weeks. I didn't realize at the time that the Bickerstaff's encephalitis was also coming back with a vengeance. As they treated my blood clot, I was once again descending into that black hole. For the blood clot procedure I was required to lie on my stomach with my head turned to one side, almost an hour the first day, and over an hour the following day. As a result, I had terrible pain I my neck and back that lasted for many weeks after that. During this time one of the other Neurologists, came into my hospital room and said they were considering giving me more of the IVIG. In looking back, I should have done that, but it had caused such horrific headaches, I really didn't want to, so they didn't. After a couple of days of being in the hospital this time, I began to experience paranoia. I didn't understand what was happening to me. I was hearing people outside of my room laughing and talking loudly. It sounded like they were having a party, watching a TV turned up very loud, playing board games and being very disruptive. After my blood clot procedure was complete, I complained about the noise to my doctor. He seemed puzzled, but he said he would have me moved out of the ICU, and back to a regular room. Then it got much worse. I could hear people coming and going through a doorway close to my room. They would talk very loudly and the door would slam, over and over, continuing all night. My double vision was worse than ever, and now I also had terrible pain in my neck and back, from the blood clot procedure. I tried to think of my cats at home that I've had for years. They are like children to me. It was alarming when I realized that I couldn't remember how many I had, their names, or what they even looked like. My blood clot was now resolved, but I was at my lowest point, since all of this had started. I felt like I had to get home, or I would surely die. I called my husband that next day, and asked him to come get me just as soon as he could. When he arrived, they told him I couldn't leave. I have always observed rules, but on this day I absolutely had to go home. I had never experienced a panic attack until this day. I told them I was leaving, no matter what they said I just had to go home! A very kind Dr. came in and tried to convince me to stay, but finally prepared my discharge papers. So, I did come home. Now, I was so weak that I couldn't begin to get out of bed without a lot of help from my husband. I couldn't walk even with the walker that I had been given. I was incontinent, both bowels and bladder, so I had to wear adult diapers. I had lost a lot of weight. I mostly stayed in bed, not able to eat, descending further and further into that black hole, that alternate universe. As I laid in my bed, in the house that I've lived in for 40 years, I remembered feeling like upstairs was downstairs, and downstairs was upstairs. The door from the bedroom to the bathroom seemed like it was on the wrong side of the bedroom. I couldn't picture what was outside of the bedroom door. I knew there were stairs, but in my mind everything was different. I could hear my husband, downstairs talking on the phone, but I couldn't picture where he was. I couldn't remember the names of my cats, even when I was looking at them. And I felt like I was living on a tilt board, like the tilting stage in a show that I had seen several years before. My days and nights ran together, as I descended further and further into my black hole of hell. That is how I spent most of January. Eventually my mind started to work again, although still with many deficits. My strength slowly improved some, too. I went to see my doctor from Inpatient PT. She gave me a pep talk and referred me to outpatient physical and occupational therapy. At occupational therapy I would try to do eye exercises for my double vision, but it caused the raging headaches to return, so I had to stop. But the therapy did help me learn how to cope with some of my deficits. I feel like I have aged at least 10 years or more over this past year. I descended into this deep black hole, a terrifying hell that for the rest of my life I will never forget. Through this experience, I have learned things about myself. I never knew that a person could be that broken, in mind, body and spirit, and still return. I have problems that will like stay with me for the rest of my life. My double vision has improved when I'm looking straight ahead thanks to my special glasses, so I no longer struggle with sea sickness, although my vision is still quite poor. I still see double peripherally, and I'm beginning to think that will never go away. I still get headaches regularly, always in the same spot where they were when at my worst. My hands shake some all of the time, and they get much worse with any stress. My family has noticed how frail I have become, compared to a year ago. I always said I planned to live to a hundred, but no longer do I think that could happen. It makes me very sad that I can no longer pick up my little grandchildren. Then there are the almost nightly terrifying dreams and horrific nightmares. I am usually in a struggle and my arms won't work, as I try to protect my loved ones. Sometimes I wake up screaming. One time I was dreaming that I was fighting someone off, and in a wild frenzy, I grabbed his hand and bit him just as hard as I could. I was so distressed when I realized that in my sleep, I had grabbed my other hand, raised it to my mouth and as I woke up from the pain, I was biting down just as hard as I could on my own hand. It makes me afraid to go to sleep! Before I was sick, I wasn't able to remember my dreams when I woke up, and I never had the feeling that they were bad or that I was dreaming about anyone I knew. Now, it's always someone I love, the dreams are always terrifying, and I remember them for days and weeks after. All of this has been very hard on my dear husband of 40 years. I was the one who had been helping him with his health issues in the summer of 2016. He had just been diagnosed with Congestive Heart Failure, and wasn't feeling very well, at all. But when I went into the hospital last November, he was there for me, every single day without exception, though I know what a struggle it was for him. And the entire household, including the care of our three cats, fell to him. Trying to deal with all of this paperwork, and reliving the past year had turned me into an emotional wreck. But I am very thankful that I didn't die. I am so blessed to have a very loving, supportive family. I even know my three cats again! Have I asked myself, "If only I hadn't decided to go get that flu shot" and "Why me"?. You bet I have, over and over again!!