No. 1 - “Why are you nodding your head ‘no’?”
I get this question a lot, and I generally don’t explain why, but I will for No.1 on my list of weird things.
A good portion of the time I am frustratingly unable to control my own head, so sometimes it will look like I am nodding “no” when I am really not.
I have an essential tremor, which affects the movements of my head. It’s called a “movement disorder” and is somewhat similar to Parkinson’s disease. My tremor is genetic, my mother has it and she can remember an uncle having a tremor as well. Catherine Hepburn had the same condition towards the end of her life; it’s noticeable in “On Golden Pond”.
Sometime in my mid-twenties I began to notice that sometimes when I read a book or watched t.v., my head would move in a “no-no” fashion, without my control. At first, it didn’t bother me much and was not generally noticeable, so I simply discounted it as nothing to be worried about.
When I was 27 however, I moved from my home town to Denver and the tremor became much more noticeable. I was stressed at the time, adapting to a new city, living with my sister, and was working as a temp. The movement of my head became so violent and uncontrollable that I was at times unable to read a book because my head would move so much that I could not focus on the pages.
I finally went to see a doctor about the problem and was fortunate enough to have a doctor who recognized what was wrong. (My mother’s is very slight and she has never had it diagnosed, so I did not know what it was, even if my mother had the same thing.) He explained that an essential tremor is similar to Parkinson’s and epilepsy in that all of them involve some sort of electrical mis-firings in the brain. For me, this misfiring affects the side to side movement of my head; the more the mis-firings occur, the more my head moves back and forth.
Since essential tremor is similar to epilepsy, my doctor and I began first to try medications used to treat epilepsy to see if they would help. After those made me nauseous and tired, we tried a whole bunch of different medications over the course of several years in an attempt to find one that worked and that did not make me sick.
The tremor was still pretty bad during this “medication trial” period and it caused me to shy away from contact with other people. I rarely went out or sought out friends and when I did I generally spent the entire time trying to mitigate the tremor by resting my chin on my hand and by avoiding face-to-face conversations.
I searched for and found a tremor support group at a local hospital and went with the expectation that I would meet some new friends. Instead, I found a room of people all over the age of 70, except for one woman who turned out to be there to discuss the tremor of her adopted daughter. A neurologist was speaking at the meeting about a new brain surgery that had been shown to help with tremor symptoms. During his lecture the doctor stated that tremor was generally a condition of older people and, while looking directly at me, said “If the tremor starts when you are young it is only going to get worse as you get older.” That was the end of my visits to the support group.
By the time my high school reunion rolled around I had found a medication that was able to help with the tremor and did not make me sick. However, it could not diminish the tremor in situations when I was nervous and because the medication’s main use was the lowering of blood pressure, it had caused me to gain a lot of weight. I had gained about 50 lbs, both due to the medication and honestly, because I was low on self esteem but not on potato chips.
While I really wanted to go to the reunion and see some of my friends, I simply couldn’t get the courage up to go. I was certainly never popular or well-liked in high school, and so had hoped to at least go the reunion a “better” person that could wow everyone with how great I had turned out to be. Instead, I was overweight, single, with no real career and couldn’t control my head. For my own self-esteem I stayed home and missed seeing my friends.
As the years passed and the medication built up in my system the tremor became less noticeable. I also learned to avoid caffeine, and learned that the tremor was worse when I was overtired. By the time I met my husband the tremor was only slightly noticeable and by our third date I was able to talk to Mike about the tremor. He’s such a great guy that he went out and researched it himself.
Last year I had to stop the tremor medication since Mike and I were trying to get pregnant and it was not a drug I could be on while I was pregnant. I was really nervous about going off the medication, since it been many years that I had been on it and my tremor was somewhat under control.
In the end, even without the medication the tremor was only slight; sometimes people would ask why I was nodding “no” and I would not have noticed the tremor occurring. I am still unable to talk about the tremor to most people who ask, it’s really embarrassing for me since it seems like I am nodding my head of my own volition when I am really not. It’s strange and frustrating to not be able to control your own body, especially my head, since it’s movements are not something I can hide during a conversation.
On the other hand, it’s been a year since I took any tremor medication and I have not had any episodes as bad as when I was in my twenties. I keep my fingers crossed that my tremor will stay slight without the need for medication and that I can finally start to lose some of this weight…



