I Struggle with Sleep Disorders, but They Don’t Stop Me

I Struggle with Sleep Disorders, but They Don’t Stop Me

Imagine that you’re sitting in your 7 a.m. clinical psychology class and fighting to stay awake. Energy drinks were part of my morning routine in college. I usually went to bed around the same time every night, so I couldn’t figure out why I was still tired and worn-out. 

Fighting fatigue

Fatigue is a major symptom of multiple sclerosis (MS). The type of MS fatigue I was suffering with is also known as lassitude. As the day progressed, I would feel increasingly drowsy, and working became difficult. At the end of the day, I was exhausted, and driving home was a challenge. To make it home, I would eat while driving or take a nap in my car. I found a suitable place to park and went there every day after my shift to nap for 15 minutes to an hour.  

Falling asleep has never been hard for me, though staying asleep has become difficult. One day I was studying with a friend, and we decided to take naps in the study area. My friend said that I fell asleep instantly. I even had a dream. But I only slept for 10 minutes. I fell asleep anytime I was sitting in a quiet environment. I’ve nodded off in movie theaters, in class, and even at a stoplight.

Sleep disorders   

I also experienced sleep paralysis and brain fog. When the fatigue and daytime sleepiness set in, my thoughts were cloudy and my speech unclear. I would think one thing, but entirely different words would come out of my mouth.

I was unfamiliar with sleep paralysis until my doctor mentioned it. Taking naps randomly during the day might contribute to this symptom. Sleep paralysis can be described as being conscious while sleeping. The experience is terrifying. I couldn’t speak or move and would try to wake myself up. I would often feel a presence in the room or think someone was rubbing my back.

My doctor suggested a sleep study to get official diagnoses. The study concluded that I had fatigue, narcolepsy, and insomnia. My fatigue slowed me down and led to narcolepsy. I could fall asleep in two minutes, whereas the process normally takes 10 to 20 minutes. However, staying asleep was a challenge, and I would wake up every few hours. The number of hours I was sleeping decreased, and daily functioning became more difficult.

Finding the right treatment

I have tried various treatments for my sleep disorders, and I’m still trying to figure out what works for me. I started taking regular naps during the day. On my lunch break, I dozed off in my car for 15 minutes. Then I started taking Adderall. Though I am not a big fan of this medication because of its side effects, it was one of the few things that kept me awake. I could work and drive, and I didn’t need to take naps. But when the medicine wore off, I felt horrible. Then when I needed to increase my dosage every few months for the medicine to be effective, I decided to go back to the drawing board. 

As a reminder, everyone’s medical experiences are different, and these are my personal observations. Be sure to consult your doctors about any treatment decisions you make.

Since then, I have changed my medications and habits. While it’s hard, I have learned to manage my life. I may have narcolepsy and fatigue, but it doesn’t stop me. If you struggle with sleep disorders, I would love to hear how you cope and what forms of treatment you have used.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Just a regular girl fighting MS. I am 29 with a Masters in Psychology and motivated to reach out to others like me.
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Just a regular girl fighting MS. I am 29 with a Masters in Psychology and motivated to reach out to others like me.
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4 comments

  1. Esther says:

    I love your attitude, Stephanie.
    I will soon start a low-dose naltrexone regimen (1.5 mg daily). I read it helps with insomnia, chronic fatigue, pain, etc. due to autoimmune disorders. I am not sure it will make a difference but it won’t hurt to try and I’m all about experimenting with myself (safely) 😉

  2. Claudia Chamberlain says:

    I was in Law School, diagnosed a week before I began the program, when I started having trouble sleeping. At the time, I just figured it was law school or the # of Lattes I consumed, never considering it was a symptom of MS. Several years later, when I had small children and was afraid of wrapping my car around a tree while in my exhaustion cloud, I went to a sleep disorder center. Still, no medical person told me it was a symptom of MS.

    Like you, I was a “wake-up person” and was prescribed Sonata (a short acting sleeping med that works for about 4 hours). Worked great for a few years.

    Now, 29 years into MS, I take Ambian extended release (supposed to be a full night sleep med, but only gives me about three hours), Melatonin and Baclofen (muscle relaxant for kicking at night)… And it still doesn’t work… I hope someone comments on any new meds that I can bring up to my doctor.

    Brain fog and losing words mid sentence is so frustrating! I feel your pain.

  3. Kathy says:

    I am 67 years old and have lived with MS for 48 years. Still mobile with a rollator and cognitively good (or least I think so.) Sleep has been a deteriorating challenge for several years. As you know, the usual medications had side effects worse than not sleeping. Two months ago I took a Yoga Nidra meditation course called iRest (by Richard Miller.) I practice with audio CDs daily and YouTube tracks during the night. It has been life changing! It helps eliminate the night time anxiety over not sleeping while giving deep rest in meditation. This particular adaptation of the ancient practice has been clinically studied for folks with PTSD but the studies included folks with MS and/or trauma. There’s lots of info on BodySensing (Reggie Ray) and Yoga Nidra on the net. There’s no down side to trying it, for sure. YouTube has great lectures.

  4. Gia says:

    Adderall has helped me too and it’s the only thing that helped me stay awake at my job. It doesn’t seem to be helping as much as time goes by. Maybe it can be changed to something new.

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