ME/CFS and the Multiple Sleep Latency test?

[60trixx]

After 8 years of fatigue, I was finally diagnosed with type 2 narcolepsy because 3 of my 5 naps during my MSLT triggered REM sleep. Can this be mistaken for CFS/ME? Or do people with CFS/ME not have these REM episodes? I'm sure a lot of people from here have had comprehensive sleep tests so I'd love to hear experiences.

Oh, and I also have moderate sleep apnea but after 10 months of using an APAP machine there was no improvement at all.

 

[belize44]

Well, I find it discouraging because you say that after 10 months you have shown no improvement with your sleep apnea. I have an appointment to get a C-Pap machine on Monday. I don't know what I'll do if that doesn't help. Do you think that the reason that you haven't improved is because of your diagnoses of type 2 narcolepsy? Do you think it will involve a different treatment?

 

[Shanti1]

I think a lot of us have had sleep tests, but not the Multiple Sleep Latency test as it isn't as relevant to ME/CFS. Sleep tests are important to rule out sleep apnea as contributing factor in ME/CFS and to look at sleep quality as many pwME don't reach the deep stage of sleep known as delta.

Type 2 Narcolepsy sounds like a very distinct condition from ME/CFS but I could see a doctor misdiagnosing because their patient is fatigued and they don't know why so they throw them in a bucket diagnosis called CFS without using the proper diagnostic criteria. Now, it is possible you have ME/CFS in addition, check out the symptoms here to help you figure it out if you haven't already: https://mecfsroadmap.altervista.org/

Oh, and I also have moderate sleep apnea but after 10 months of using an APAP machine there was no improvement at all.

Do you mean the narcolepsy didn't improve or the sleep apnea?

 

[SnappingTurtle]

I had an MSLT done but no apnea (in prior night's study) nor narcolepsy observed. I have excessive daytime sleepiness. All this was done prior to confirming I had ME/CFS. Hope this helps.

 

[60trixx]

Well, I find it discouraging because you say that after 10 months you have shown no improvement with your sleep apnea. I have an appointment to get a C-Pap machine on Monday. I don't know what I'll do if that doesn't help. Do you think that the reason that you haven't improved is because of your diagnoses of type 2 narcolepsy? Do you think it will involve a different treatment?

My sleep apnea was only moderate (23 apneas/hour) so I don't see much difference, but in general the more severe your sleep apnea the bigger improvement you'll see. Did your doctor tell you how many apneas you have or the severity?

I think a lot of us have had sleep tests, but not the Multiple Sleep Latency test as it isn't as relevant to ME/CFS. Sleep tests are important to rule out sleep apnea as contributing factor in ME/CFS and to look at sleep quality as many pwME don't reach the deep stage of sleep known as delta.

Type 2 Narcolepsy sounds like a very distinct condition from ME/CFS but I could see a doctor misdiagnosing because their patient is fatigued and they don't know why so they throw them in a bucket diagnosis called CFS without using the proper diagnostic criteria. Now, it is possible you have ME/CFS in addition, check out the symptoms here to help you figure it out if you haven't already: https://mecfsroadmap.altervista.org/

Do you mean the narcolepsy didn't improve or the sleep apnea?

Why isn't the MSLT relevant to ME/CFS? Shouldn't people with ME/CFS make sure they don't have narcolepsy since they share many of the same symptoms? My doctor determined I don't enter enough deep sleep (i.e. I had 3 REM episodes during my test pointing to narcolepsy). Xywav/Xyrem are medicines to help you stay in deep sleep for longer which is exactly what narcoleptics need.

Also yep my sleep apnea hasn't improved, thought I don't think it was contributing to my tiredness in the first place.

I had an MSLT done but no apnea (in prior night's study) nor narcolepsy observed. I have excessive daytime sleepiness. All this was done prior to confirming I had ME/CFS. Hope this helps.

Thank you, I was wondering if ME/CFS also causes REM episodes during MSLT due to sleep deprivation.

 

[belize44]

My sleep apnea was only moderate (23 apneas/hour) so I don't see much difference, but in general the more severe your sleep apnea the bigger improvement you'll see. Did your doctor tell you how many apneas you have or the severity?

The report read: A total of 57 respiratory events made up of 4 obstructive apneas, 1 central apneas/mixed
apneas and 52 hypopneas resulting in a respiratory event index (REI) of 9.0.

 

[Alvin2]

Low MSLT latency is not enough to diagnose narcolepsy imo, but the REM sleep abnormalities if confirmed by overnight polysomnography, low orexin levels, sleep paralysis, daytime sleep/micro sleeps, hypnagogic hallucinations and cataplexy would be strong indicators of the diagnosis.

Idiopathic hypersomnia is a diagnosis to exclude.

As for treatment Modafinil/Armodafinil are easier on the body vs Dexedrine.

 

[60trixx]

Low MSLT latency is not enough to diagnose narcolepsy imo, but the REM sleep abnormalities if confirmed by overnight polysomnography, low orexin levels, sleep paralysis, daytime sleep/micro sleeps, hypnagogic hallucinations and cataplexy would be strong indicators of the diagnosis.

Idiopathic hypersomnia is a diagnosis to exclude.

As for treatment Modafinil/Armodafinil are easier on the body vs Dexedrine.

I was diagnosed with type 2 narcolepsy, I don't have symptoms other than excessive daytime sleepiness. It wasn't low MSLT latency, but the fact that I had 3 episodes of SOREMP during the MSLT which got me the diagnosis (requires minimum of 2). Is this inaccurate and should I tell my neurologist anything?

 

[Alvin2]

I was diagnosed with type 2 narcolepsy, I don't have symptoms other than excessive daytime sleepiness. It wasn't low MSLT latency, but the fact that I had 3 episodes of SOREMP during the MSLT which got me the diagnosis (requires minimum of 2). Is this inaccurate and should I tell my neurologist anything?

I would keep digging.
That is classic for Narcolepsy but is not definitive in itself. Being overtired can produce a similar result, and if you have ME/CFS all bets can be off as our sleep abnormalities are all over the board.

I would think of it as one good piece of evidence but you should fill in the rest of the blanks to be sure its the correct diagnosis.