Denna’s Story: Living with MS and Narcolepsy

  • Denna and Matt

One of the major symptoms of multiple sclerosis is fatigue. According to the National MS Society, fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. Fatigue can cause problems at home, in personal relationships and at work. The problems at work can affect performance and decision making and could lead to termination. Healthline reports that, “getting a better night’s sleep can help you fight related fatigue, as well as battle the physical toll MS can take on your body.” The Healthline report goes on to suggest that establishing a sleep routine can help reduce fatigue and the physical toll that that MS can take on you.

What if you have a sleep disorder that made establishing a sleep routine is impossible? This is the case with narcolepsy, which is a central nervous system disease which causes periods of sleeplessness, sleep attacks and extreme daytime drowsiness. According to a separate Healthline report, “The Center for Narcolepsy (CN) at Stanford University School of Medicine reports that one in every 2,000 Americans has narcolepsy.” Recent research shows that brain lesions associated with MS can be a contributing cause to an onset of narcolepsy. Dr. Rosenberg, a sleep medicine specialist, reports, “MS is listed as the fourth most common cause of narcolepsy that is associated with other disorders.”

Imagine that you suffer from both narcolepsy and multiple sclerosis. Combine a sleep disorder with a disease of chronic fatigue like MS and the result can be devastating. This is the case for Denna Noah. I recently interviewed to learn more about what life is like living with MS and narcolepsy. Here is her story:

MC: Denna, when did you first know that you possibly had a sleep disorder?

DN: My story starts very young.  I remember my first problems staying awake was in the seventh grade.  Every day I told myself I would not fall asleep in class and every day I did just the opposite.  From that year forward every single year until graduation I was scolded, accused of doing drugs, and accused of staying up all night.  I remember being so frustrated because it was none of those things.  I had my first child at 16 years old my sophomore year.  Prior to becoming pregnant I was head cheerleader, homecoming court, student council, anchor club, and class favorite twice.  I withdrew myself from school and returned the following year and repeated the tenth grade.  I graduated at 19 with a three year old.  After the birth of my son my sudden sleep attacks in school became because “that baby” kept me up all night

After high school, Denna was married and went on to pursue her RN. She wanted to help others like herself and also better understand the symptoms that she was experiencing.

MC: Denna, how has living with narcolepsy affected your personal relationships?

DN: Raising a baby, going to RN school and narcolepsy cost me my first and second marriages. I never understood why the outside world thought I was so peppy, cute, sweet, honest, blunt, and funny yet on the inside, I couldn’t keep the attention of my spouse.  I assume now that it had a lot to do with moodiness, agitation, and cataplexy during intercourse.

According to the NPD, “Cataplexy is an abrupt temporary loss of voluntary muscular function and tone, evoked by an emotional stimulus such as laughter, pleasure, anger, or excitement.” Since these emotions are present during sexual intercourse, there is a probability that if you have a sleep disorder sexual activity can trigger a narcoleptic response. If your partner does not understand the disease, then the potential exists for your partner to feel like they are the problem. Even though it is tough to discuss intimacy with your partner, communication is critical when there is sexual dysfunction.

After two failed marriage related to her narcolepsy symptoms, Denna found love for a third time. Everything was going right with her new love until she started experiencing new symptoms that appeared to be neurologic.

DN: I started having terrible headaches I had contributed to stress.  I had an MRI of my neck was normal other than my spine being straighter than it should be at the curvature, which was due to spasms.  He told me my brain MRI was normal other than some deep white matter changes that he was not concerned with unless he thought I had MS which he did not.  Because my mother had MS, this news concerned me.  I continued to work but started making minor mistakes and calling in just because I was so exhausted.  In summer, the heat was so unbearable that it would make me feel as though I was dying and I would pass out at times. Then this would trigger my narcolepsy into overdrive which in return made these weird symptoms I was experiencing worse. I ended up making myself the appointment with the neurosurgeon and having the MRI of my neck and head. In the process of this long journey to find out for sure and diagnosed with demyelinating disease, and starting a new job, my soul mate (third husband) decided that he no longer wanted to be with me and my children.

Denna was devastated with being diagnosed with MS and going through a third divorce. She was in her mid-thirties, having to move herself and her four kids in with her father with whom she hadn’t lived since a teenager. She also had to resign her job as a nurse and went to work at a hospice which she thought would be less stressful. However the stress had taken a toll. Life was falling apart all around her and she felt like she was going through the motions. There were periods of being awake that she felt like she was in a dream. Then one fateful morning in 2010, she got behind the wheel after her shift.

DN: The day of the accident, I took Ambien instead of my daily dose of Zoloft for my cataplexy.    I got arrested and given a DUI class 2 because I hit someone.  It broke my heart.  I help people not hurt them.  My bail was $50,000.  I had never even been to a jail to pick anyone up much less spend the entire day and evening in one myself.  I had injured someone and it ripped my heart out.

While narcolepsy is not fatal, accidents often happen. Hallucinations, daytime drowsiness and insomnia can lead to accidents. In fact the Healthline report on narcolepsy, “Some states may limit driving privileges for people with narcolepsy. Be sure to check with your local DMV. They can help keep you from endangering anyone or breaking the law.”

Luckily for Denna, her story has a happy ending.

DN: Thank God my prayers were answered and Matt (her third husband) and I reunited and I moved back home. Now, I feel like am the Phoenix, rising out of the ashes. I am brushing myself off, putting on my big girl panties and literally trying to kick MS and NWC (narcolepsy with cataplexy).   I am eating much better than I did.  I started experimenting with juicing, raw diet, and lower gluten in my diet.  I started yoga and I am feeling better already.  I will rise again and fly.  Only this time it won’t be with broken wings.  I’ve been bruised not broken and I will not crumble. I feel like I have been given a second chance and I will do the best I can and try to help others who are experiencing what I have. I hope that sharing my story with you will do that.

Denna’s story is one of courage and perseverance. She has overcome living with MS and NWC to be the mother and wife that she always wanted to be.

If you would like to learn more about Denna’s story, please visit her blog, http://www.dennaaycock.blogspot.com/

 

Resources:

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue

http://www.healthline.com/health-slideshow/multiple-sclerosis-sleep-problems#1

http://www.answersforsleep.com/sleep-and-multiple-sclerosis/sleep-and-ms-part-2/

http://www.healthline.com/health/narcolepsy#Overview

http://www.nnpdf.org/WhatIsCataplexy.htm

 

 

 

 

 

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One Comment

  1. Thank you very much,! I hope I can help others from learning from my own experience and continued misdiagnoses for years and being told my fatigue was from exhaustion of being a workaholic to support four kids :) I felt often this wasn’t all that wasn’t all that was wrong yet was made to feel I was just anxious and depressed :(. It cost me my life almost and others and hardships for me and my kids! I hope other women and also men that have the responsibility of taking care of their families major unnecessary hardships! My love Matt and my kids continue to be my biggest advocates, nurses, motivators and more importantly my best friends! My parents and wonderful step parents also :)

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