Weeks 1-2

After receiving the Ramsay Hunt Syndrome (RHS) diagnosis at my Emergency Department visit, I felt relieved mentally but was extremely exhausted and in pain. I went home with the impression that the paralysis would improve in about three weeks. I was told to get as much rest as possible. For the next seven days, I slept whenever I could. Unfortunately, I could not sleep well at night – I would wake up multiple times each night, sometimes due to pain and other times due to getting SO hot and each time I had trouble falling back asleep. I initially thought that I would sleep and watch movies and catch up on all Netflix and Prime series! This did not happen because I couldn’t tolerate watching TV. The movement and colors on the screen bothered me. So, sleep is what I did!

I depended on my husband to help me sit up, lie down, get out of bed, walk from room to room – anything that involved movement, he had to help. When I had doctor appointments, he would drop me off and place me in a wheelchair, and then park. This was such a new way of life. Luckily, he could work remotely for most days and if he did have to go into work, he only did so for a couple hours. He kept up with what medications I needed to take and when. There is no way I could have done this becaue the medications made me pretty loopy!

I didn’t eat much the first week because it actually hurt to eat and I did not have any sense of taste. I had blisters in my mouth! I wasn’t expecting this and as you can imagine, these were painful. I used a straw at times to drink although I have read that a straw should not be used at the beginning of RHS. I found it helpful at times, but other times, it was easier to try to drink directly from a glass (expecting dribbles to happen).

Each night I went to bed with a cold wrap on the back of my head and around my right ear. This helped numb some of the pain. Some of my pain was at the back of my head and it seemed that my skull was actually aching. During the night, my husband would exchange it for another. During the day, I alternated between cold and hot wraps. This really was determined by how I felt at the moment. Instead of buying an additional rice wrap, I used a bag of frozen corn for my cold wrap! Cheap and easy to find, and stick it back in the freezer to refreeze between uses!

During these two weeks, I did not see or feel any significant changes.