About 80% of people with multiple sclerosis (MS) have what the Centers for Disease Control and Prevention define as pathological fatigue—one that is not improved by bed rest and may be worsened by physical or mental activity, according to the National Multiple Sclerosis Society. In fact, studies have found that sleep disorders like narcolepsy, rapid eye movement (REM) sleep behavior disorder, and insomnia are commonly found among patients with MS.
But as a study in the Journal of Clinical Sleep Medicine points out, a significant number of sleep disorders remain undiagnosed in MS patients.
That’s why Robert S. Rosenberg, DO, FCCP, a board-certified sleep medicine physician and author of The Doctor’s Guide to Sleep Solutions for Stress & Anxiety, says it’s crucial for both patients and clinicians to check if sleep disorders like narcolepsy are also part of the underlying problem of fatigue-related issues. “If the patient is presenting with significant sleepiness, it is not uncommon for sleep apnea or narcolepsy to be overlooked,” Rosenberg says.
In fact, whether it’s due to a head injury, brain tumor, or an inherited disorder, MS is reportedly the fourth common cause of narcolepsy that is associated with other disorders.
There are two prevailing theories that point to why narcolepsy is more prevalent among MS patients, according to Rosenberg. One involves the common genetic links both MS and narcolepsy share; the other suggests that it’s due to the hypothalamic lesions that damage the hypocretin neurons.
“When [MS becomes a cause of narcolepsy,] we frequently see MS lesions in the hypothalamus,” says Rosenberg. “This is the area of the brain that is attacked in narcolepsy by what we believe to be an autoimmune process. In MS, the same areas are attacked by MS itself and we see the low levels of hypocretin, the wake promoting neuropeptide, in the cerebrospinal fluid similar to what we see in type 1 narcolepsy.”
While it may be tricky to untangle the differences between MS symptoms and symptoms from sleep disorders like narcolepsy marked by excessive daytime sleepiness, Rosenberg emphasizes that it’s crucial for sleep disorders to be on a clinician’s radar.
“When we have a patient with MS who is sleepy, we need to look for the underlying cause such as sleep apnea or narcolepsy,” Rosenberg says. “[I’m also interested in] a few anecdotal cases in the literature of patients with MS and narcolepsy, who have been treated with corticosteroids, with resolution of the narcolepsy.”
I have MS and I also have sleep paralysis / night terrors that I can’t wake up from. I often end up back in my nightmares even if I get up. I’m not able to be on any Ms medication due to the fact that I’ve been allergic to five of them. Is there anything that I can do?
Hello;
I had narcolepsy since 1950, worked as Heavy Duty Mechanic’ 1992 diagnosed with transverse myelitis, 2013 went downhill,& got MS diagnose 2016. Seroquil 15 to 25mg at bed stopped the terrors in 2000. I break up a 25mg & measure the dose with a mg scale to get it as low as possible.
I wish you luck ……….David
I was diagnosed with narcolepsy May of 2017. In June of 2018 I got my MS diagnosis. I am on Vyvanse for the narcolepsy and it works wonders. One of the biggest things I have come to find helps keep the night terrors away is minimizing your caffeine intake. Whatever you do, do not have sugar or caffeine of any type before going to bed, this brings on a sleep attack and in turn causes the night terrors. Still trying to figure out the MS, but narcolepsy symptoms have been there since 2010 and night terrors were a huge issue for me.
I understand their are meds that arrmade for norcolipsy that ms dr.s are having great success with treating ms fatique and wakefullness ahd clearer thinking called novigil. Which ive taken even with co papay help from manufacturer. My new insurance company will not cover it because its labeled for narcolepsy Is there anything i can do. Stopping it has had made my ms so much harder to deal with
I take Provogil (Modafinil), the original form of Nuvigil (Armodafinil), which is typically available in more generic brands often making it a little cheaper.
If your insurance simply won’t approve it, there is a way to get around the prescribing reason requirements. There are many discount pharmacies online that will fill your prescription if you’re uninsured, insurance won’t approve it, or the prescription copay is too high, like in my case.
My Provogil costs me $80 for a 3 month supply at 400mg per day from RxOutreach.com which is cheaper than my insurance copay of $60 for a 30 day supply.
It is a mail order pharmacy so initially you need to call to set everything up but, once you’re in the system, your Dr can call in your prescription, (if it’s a schedule IV drug like Provogil or Nuvigil you have to mail a paper copy of the script along with a refill form with your payment info) and when it’s time to refill they contact you for payment (check, money order, or debit/cc), set it to be filled, and then send your meds via certified mail with a required signature on delivery.
Interesting thanks for sharing I have multiple sclerosis that I’ve had for 30 years I’m still trying to live independently and I believe I have narcolepsy this is been going on for a couple years but I have excessive tiredness and dreams during day time and even I guess I talk to people that I’m not even around and I guess I start talking to them like they’re right there and when somebody says who are you talkin to that are visiting me then I wake up and go nevermind it was in my mind I even once went to another room and got a new deck of cards out that it hadn’t been unwrapped because I thought I was playing cards with people and a person said they didn’t like my cards because they were old and I said I’ll go get a new pack and then I come back in the room and I wake up and think to myself what am I doing nobody is here and wonder am I losing my mind It seems like it to me because I even seem to have illusions that I was around people and that were talking to me and well 8 though I will even talk back or we are doing something fun and it don’t seem to be deja vu so I’m hoping this doesn’t turn into anything to disastrous for me I’m still praying that the Lord will bless me somehow. I already had one sleep study done and the second one is coming up soon and there’s already told me that I stop breathing 7 times in a hour but I only sleep normally 4 hours at night and I 60 yrs old female but it use to be 8 hrs. I needed and not four hours but next week the second part of this sleep study is to see what kind of CPAP machine I need is this going to help somebody in my situation?
I have been having alot of daytime sleepiness. Some days I stay in bed until 3pm or 4 pm, because I am so tired. I am in bed most nights by 11pm. I have woken up at 9am before and have been fine. Would take a nap in afternoon. Some days I wake up around 9am and I would be up all day.
I was diagnosed with MS 11 1/2 ago. Past 2 months I have had increasing daytime sleepiness. Some days to the point I can’t stay awake. I have recently started feeling like I can’t move. Not all the time but it seems more frequently now.
I am going to be tested for Narcolepsy on November 12,2018. I have been passing out and my legs have been jerking multiple times daily for a year. Finally a doctor is having me do a sleep study for Narcolepsy. I sure hope it gives me answers. I am tired of not knowing what is wrong.
I am sorry you are going through that. What were the mslt results ? I have that
I’ve been having the weirdest fatigue at 1:30 pm. I’ll actually fall asleep with my eyes open – I think I’m awake but I’m actually asleep. I’ll find that I’ve typed something that was in my dream rather than what I was supposed to be working on. It’s not as intense as narcolepsy, but I can’t keep from falling asleep.
Please talk to your physician about a sleep study test. There is a condition called Hypersomnia.
I need to talk to someone! I was diagnosed with Narcolepsy seven years ago and now I’m having symptoms of like tingling all my joints hurt and muscle loss control