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Hope Found Here: Elainne's story

Updated: May 1, 2023

While preparing to write my story, I reviewed the journal which I have kept for four years, now totaling 100 pages. On August 27, 2018, the jerks hit with no warning. There was such a sense of bewilderment and disbelief about what was happening. The first five doctors I saw could not unravel the mystery as to what caused the jerks or how to stop them. One neurologist declared that in his 35 years of practice, he had never seen anything like this. He was not alone. The doctors were bewildered and could only offer to write a prescription that might work or give some generic advice, such as staying hydrated. Each prescription was used only briefly, due to minimal benefits and negative side effects.

Thankfully, my husband Sam is very supportive and has done whatever he can to help me. I’m also very thankful that I retired from teaching before the jerks hit, so I didn’t have to be in front of a math class with minimal sleep. Because of the support of my family and friends, who graciously understood my situation, I did not feel alone. Our friends in two Bible studies have consistently prayed that God would heal me and give me strength through the journey.

To describe what the jerks looked like will sound bizarre. My whole torso would jolt violently, sometimes causing my neck to “crack”. If I was lying on top of the bedcovers, both legs would “fly up” at more than a 45-degree angle and then plop back down. The jerks were repetitive, happening when I first laid down and continuing relentlessly every two or three minutes, often for hours. My desperation was expressed in a journal entry in November 2020: “Every time I think the jerks have stopped and that I might be able to get some sleep, a jerk strikes. Now I just lay there, so tired, wanting to sleep but can’t. It’s like I have forgotten how to sleep. I’m a mess.”

On Thanksgiving Day, 2018, my niece and nephew suggested I try CBD oil. This product has helped me significantly with subduing the jerks and has been a mainstay of my nightly routine. In 2019, the jerks began to occur during the daytime hours, while sitting and relaxing. This was frightening. I sought help at a prestigious health clinic where I underwent various tests, an EEG and MRI's. My EEG showed that I do not have a seizure disorder and that there was no correlation between the 25 violent jerks I had on the table during the EEG and my brain. In other words, nothing was remarkable, so nothing could be done. Searching for more help, I tried a NUCCA (National Upper Cervical Chiropractic Association) doctor, who addressed the issue of the atlas bone. After two months of adjustments, the daytime jerks stopped!....but unfortunately they returned in about three months. Another hopeful event was when my husband Sam was massaging my leg and hit a “hot spot” which actually caused me to jerk. No jerks that night!....but again, the next night the jerks were back.

A big breakthrough came in 2020 when Sam began giving me nightly massages using a Genie massager. When he first started, I had 5 straight nights of no jerks. In my journal, I excitedly asked, “Are the jerks coming to an end? This is five nights with just Sam using the Genie massager and no meds! Just amazing! I see light at the end of the tunnel after this 1.5-year jerk journey!” My Fitbit sleep graph showed that I was getting a significantly higher level of deep sleep immediately after Sam massaged me. Although the jerks returned, massage became a powerful strategy in my arsenal of weapons.

It was in 2020 that I discovered Tracy Hans’ support group on Facebook. What a valuable platform for communication, creating a place for dialogue and opportunities to find healing! At the time I joined, there were only about 1000 of us around the world. It has been such a support to me through my journey with a plethora of good advice and opportunities to share our experiences.

In April 2021 there was a life-altering change after a trip to my dentist. Before the dentist came into the room, I had been jerking violently, even though I had taken CBD oil. I had prayed that the Lord would take care and protect me from harm. I was very calm and at peace, believing that everything was going to be all right. I explained the situation to the dentist: He would have about two minutes between jerks to do the work. After a violent jerk, he gave me a numbing shot, and then we waited for my mouth to become fully numb. Unbelievably, the jerks stopped, and my body became very relaxed! It was the lidocaine he used in numbing my mouth. Could lidocaine be the cure for the jerks? That night I applied over-the-counter lidocaine cream to the back of my left thigh. No jerks! After 30 successful nights, I reported to the Facebook group how greatly the lidocaine had helped subdue my jerks. Definitely, this was a major breakthrough, and thankfully, it has helped others around the world.

Then THIS happened: On July 15, 2022, in the grocery store parking lot, I accidentally fell BACKWARDS over a concrete curb and hit my head on the asphalt with full force. At the age of 75, any fall can mean broken bones. Normally I have good balance and am not prone to falling. Thankfully I didn’t lose consciousness and there was no blood. Miraculously, I did not break any bones or have any bruises other than the big bump on the back of my head. After seeing my doctor, I was able to manage the pain with an ice pack and thankfully, there was no concussion or brain bleed.

That night I wasn’t feeling jerky, so I did not take any of my usual medicine. There were NO jerks...and each night after that there were basically NO jerks. Also, my daytime jerks, while sitting in a chair, have basically stopped! With these fantastic results, I began researching about the brain to find out why a head trauma would cause the jerks to stop. Where I hit my head was on the parietal lobe. If you put your hand on top of your head and then move it back one hand-width, that’s the parietal lobe. Among other things, it is the center of movement sensory! When I shared with my doctor about the effect the fall had on my jerks he commented, “Motor activity is controlled by the parietal lobe, so perhaps there was some sort of a resetting of the parietal lobe due to the trauma.”

For nine months now, I have been basically 97% jerk-free! My doctor has compassionately followed my jerk journey these four years and has seen my jerks on video and in person. He has been facilitative in allowing me to try anything that he believed would assist. He declared that this fall which resulted in my healing was truly a miracle from God. What is the probability of hitting on exactly the right spot with exactly the right intensity that would cause no long-term ill effects yet stop the jerks? One in a trillion? I believe that this is an answer to prayer with God answering in a unique way. I’m thanking Him for hearing and answering our prayers.

Hopefully, through my experience, researchers will be able to gain insight and learn more about the nature of hypnic jerking. For those dealing with the jerks, I want to encourage you to keep looking for solutions, including using the extensive resources of this website and the support group platform. Never give up hope.

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