Read time 10 minutes
Q-1) Could you briefly describe your story?
A-1) I started with severe foot pain in 1998 at age 25. I underwent routine testing. It spread to my hand. I got a diagnosis of small fiber neuropathy. Testing also revealed an adrenal condition for which I received treatment over two years Following cessation of treatment, I developed what I now know to be hypnic jerking. At the time, evidence of Lyme disease was found in my blood, and so I underwent treatment for that. Different medications would exacerbate the hypnic (sleep entry) jerking through the years. I ended up going for almost 20 years with severely broken sleep. Every time I tried to enter sleep, I would pop back out of it with a twitch or a larger jerk. It was maddening, and no doctor I visited recognized it. I traveled across the country visiting hundreds of doctors. I was severely fatigued, and my nervous system was not properly regulating itself. I had some bouts of visual and auditory hallucinations from sleep deprivation. Bright lights and movement posed a lot of challenges for me. A Lyme literate doctor gave me benzodiazepine medications that I rotated, to be able to survive (enter some sleep state) and continue researching what was happening with me. I was on these for 7 years. Physiologically addicting. My jerking would RAGE if I missed a night. I couldn’t even rest my body during the day as the jerking got so bad.
I found an amazing doctor who kept researching for many years to help me. We could not find a name or anyone else who suffered from this hypnic (sleep entry) jerking. I finally found another on a website. It was a eureka moment for us. We started a Facebook group. From the other folks, I began to piece together enough information to inform my doctor of some things. I went for a genetic seizure panel test and discovered a lesser-known channelopathy. That led me to realize that I had to get off the benzodiazepine medications so I could test out what worked. With the aid of my fellow FB sufferers, I came to experiment and stabilize a bit by using specific electrolytes, lidocaine, and binders. Following this, my physician and I looked at all the data and it pointed toward a trial of Diamox medication. That led us to explore excess fluid on the brain and to find a specific doctor who runs cerebrospinal fluid MRIs and treats using atlas orthogonal chiropractic. I had my first clearance. My journey out was also in realizing different things that trip the channelopathy “wire”; inflammation and infection. I went on a new journey and discovered different infections in my body that were further impeding my cerebrospinal fluid’s journey and its ability to be cleaned and enable proper sleep. Hypnic jerking situation isn’t “cured” but it’s well managed. I learned that osteopathy and neurological chiropractic can also help. There still isn’t a sleep doctor, neurologist, epileptologist, etc who does anything but put a patient on benzo that tranquilizes this and ends up wrecking sleep stage architecture in the long run. People from all over the world are in our group- not one doctor has been identified. I started the first website devoted to hypnic jerking (also in the literature as EFHM, Excessive Fragmentary Hypnic Myoclonus). I’m starting up a mentoring program for the 2,000 people in my group to be able to systematically map a plan for themselves to get their situation under control.
Q-2) How has the disease changed your life? Your diet, work, and other activities?
A-2) It’s changed my life in immeasurable ways. I have an distaste for Western medicine and struggle to trust physicians. On a brighter note, I have become super self-sufficient, and super grateful for things in this life that I don’t think I would have appreciated otherwise. There is so much to list here in this section… I take a lot of supplements to care for myself and keep my inflammation down. I love to travel but travel heavily due to this. Through the years I’ve been on and off inflammatory diets- some helped, and others didn’t. This condition has kept me so busy that all I could do over the last 20 years was look for a cure and put time into my own company (I couldn’t work a 9-5). So, my social life suffered greatly.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group; depending on government initiatives or reading about your disease.
A-3) See above. Creating a FB group saved my sanity, maybe even adding years back onto my life. I created a registry through Rare Diseases. I created a cohort study under the Manton Center where they looked at our genes. I continue to do web searches to find new information. I just don’t think it’s out there yet.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) For me, they are easy to access. My supplements and food that keep my jerking low cost a lot of money. So far there is no known cure for what I have. The condition isn’t listed in the DSM or the ICD. It’s not on the map yet. It’s multi-faceted. Typically, people with this condition get diagnosed with Insomnia or Myoclonus. Neither of which is descriptive enough to cover the condition or lead folks to research. Please see my website if you’re interested, www.hypnicjerking.com
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) Yes, my parents have supported me fiscally through this. Now that I am in better control, I am spending less money on testing and doctor appts. But, I was never able to save it.
Q-6) Are you trying out any alternate healing techniques?
A-6) All I do is “alternative”, in the sense that everything I use is off-label. I have to pour very little water in my electrolytes or CSM binder, to get it to stop any jerking that might come on. I came by this awareness after years of trial and error. The directions say to use it with at least a full glass of water, which does nothing for me. I use lidocaine cream, as someone in my group discovered this clearance. I am so thankful for my “nightstand” remedies, without them, I would likely still be a wreck. Atlas Orthogonal, neurological chiropractic, regenerative medicine, and manual osteopathy all don’t typically fall under traditional Western medicine. My main physician is a functional MD. I try not to go to allopathic doctors when I can help it. Although I’m not jerking much at all and haven’t had a sleepless night in ages, I’m still rehabbing my sleep, and trying some interesting non-traditional approaches.
Q-7) How did you and your family deal with your changed circumstances?
A-7) My family is supportive. My circumstances didn’t change drastically or suddenly. I had a few dark moments/months through the years, and they were there for me. I love to talk about the first two doctor appts with whom I took back my power. My family was there for one of them and I’m so appreciative.
Q-8) Please share one aspect of your journey that touched you most.
A-8) I went to my chiropractor, and he walked into the room I was waiting in. He said, “I have something for you”. He asked if someone could join me there. I asked who? He said, “It’s someone from your Facebook group. She’s been seeing me for several months and her jerking is really improved. She wants to thank you”. My jaw was on the floor. I had never met anyone from the group, nor did I know that someone had traveled to the same chiropractor and gotten the same MRI based on my posts.
I found my voice on two occasions, as I mentioned above. These were amazing moments that I’ll write about here:
Sometimes well into the 5th year of my journey, I went to a regular dr and asked him to run a specific test that he had never run before. He did it although I had to carry my own biopsy in a tube out of his office and send it myself to a lab. My research proved correct: my test results were positive. Upon my return to his office, I asked him what the next step was. He said, “I don’t know, it’s not written in my books. I can’t help you”. I told him what the research showed that I needed a certain medication. He stared at me and said nothing. After a long pause, I asked “If I were your daughter, what would you do?”. He stood up, walked out, and said to his secretary “Don’t charge Tracy”. He never walked back in. I was happy though.
The second appointment was the one where I met a traditional dr who examined me thoroughly. I was with my parents in the exam room, I was at the exam table. This was 10 years into the journey. He said, “I know what you have! There is a name for this. It is called Hypnic Jerking. You definitely have that”. I said “Oh great! So, what can I do? He paused. He then said, “Now that you have a name for it, you can calm down and it will just go away”. I sat there momentarily, pondering that he hadn’t heard me say that I’d had this for 10 years, that stopping steroid medication initially brought it on, and that the sleep studies captured well over 200 jerky movements on video. I suddenly mustered all my strength together, and in a jolly but obviously sarcastic tone, responded with “OH MY GOD. THANK YOU SO MUCH. SUPER GRATEFUL THAT YOU CURED THIS FOR ME”. And I hopped off the table. I knew he was still examining me, but I was done. I grabbed my shoes, put them on, and continued with the gratitude charade. As I was walking out, I muttered under my breath “HYPNIC JERK”. I heard him exclaim to my parents “I’ve NEVER had anyone leave an appointment in the middle of it!”. I heard my mother say “Well, now you have two”. Then I heard my father say “And now you have three”, and they marched out right behind me. THE DAY I TOOK BACK MY POWER.
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9) I feel inspired when I help others. I also feel inspired when I think back to my journey and how far I’ve come. I feel proud of myself that I didn’t give up. I think what’s helped me is that for the most part, I was able to remain mostly curious- to flip into research mode soon after any reactive mode I found myself in. I was driven to discover pieces to the puzzle. I’ve written up training on exactly how to do this, and I have been able to train state child protection and court therapists in the state where I live. Makes me feel like the journey had more meaning.
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10) The recognition that I was not alone was one of the most comforting. Chances are if you are experiencing something odd, there are others with it. I find myself repeating to those in my group, that this is the time to tap into resources you might not have planned to tap… to ask for help when you need it. Most of the folks in my group are severely sleep-deprived and it is really hard for them to make heads or tails of the information provided.
The views expressed in this article are the author’s own and do not represent any kind of medical advice.