Four years ago, I was living the life I dreamed of and worked hard to get. I had earned my master's degree, was married to the love of my life, and had four beautiful children. Then my life turned upside down and has never been the same.
About nine months after my youngest child was born, I began experiencing chronic, excessive hypnic jerks at sleep onset and it has never gone away. As I am about to fall asleep, I have a muscle jerk or an internal surge, and it wakes me back up. The jerks can be in my arm, leg, abdomen, fingers, eyes, neck, etc.
The surges feel like zaps of electricity...my jaw can pop open, something in my middle ear jerks. Sometimes I awaken from electrical zaps to my limbs but without a jerk. It truly feels like my body is being tortured.
The condition waxes and wanes, however, there are many nights when I get zero (or only a couple hours) of sleep. The emotional and physical toll that significant sleep deprivation takes on a person is unimaginable.
I have seen an endless amount of doctors ranging from traditional medicine to functional medicine. I've tried medications, supplements, various diets, acupuncture, saunas, cranio-sacral therapy, meditation, brain retraining, biofeedback, the list goes on and on. I've had hundreds of tests and I've spent tens of thousands of dollars searching for answers. Yet I sit here today, no better, and with no more answers, than when this started four years ago.
My life is totally different now. I cannot work because of this condition. I cannot sleep in the same bed as my husband. If our children wake up with a bad dream or sick in the middle of the night, they always go to Dad, so as to not disturb me if I am sleeping. There are days I cannot drive my kids to school or go to their extracurricular events. I cannot exercise because I don't have the energy. Having any social life and maintaining friendships feels impossible when you're chronically sleep deprived.
Staying up late in the evening is out of the question because the jerks completely prevent me from sleeping in or taking a nap. I can count on one hand how many naps I've been able to take in the last 4 years, due to the jerks. It has caused distance with family members because they cannot understand or relate to what I am dealing with.
Being the happy, energetic wife and mom I want to be is impossible, although I still try my best. I have been blessed with a wonderful life, but I am no longer living that life. I am surviving night to night dealing with a terrible condition that no one in the medical field seems to understand or know anything about.
This condition may be rare, but it does exist and there are people suffering greatly. This condition deserves research. And for someone, ANYONE, to take an interest in helping us.