• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Fatigue differs from sleepiness - Narcolepsy

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Droogleever Fortuyn HA, Fronczek R, Smitshoek M, Overeem S, Lappenschaar M, Kalkman J, Renier W, Buitelaar J, Lammers GJ, Bleijenberg G. "Severe fatigue in narcolepsy with cataplexy." J Sleep Res. 2011 Aug 16. doi: 10.1111/j.1365-2869.2011.00943.x. [Epub ahead of print] PMID: 21848801


the Netherlands.

Abstract
Excessive daytime sleepiness (EDS) is the core symptom of narcolepsy. However, there have been indications that fatigue - which should be separated from EDS - is also a frequent complaint.

We determined the prevalence of severe fatigue in a group of narcolepsy patients and its relation with excessive daytime sleepiness, psychological distress, functional impairment and quality of life.

We included 80 patients fulfilling the International Classification of Sleep Disorders (ICSD)-2 diagnostic criteria of narcolepsy with cataplexy.

Fatigue was measured using the Checklist Individual Strength (CIS). In addition psychological distress, including symptoms of depression, functional impairment and quality of life, were assessed.

Comparisons were made between patients with (CIS-fatigue score???35) and without severe experienced fatigue.

Fifty patients (62.5%) reported severe fatigue. There were no sex or age differences between patients with and without severe fatigue.

Both fatigued and non-fatigued patients had the same amount of daytime sleepiness (Epworth Sleepiness Score 14.3??4.2 versus 13.1??4.4, P?=?0.22), confirming the separation between sleepiness and fatigue.

Interestingly, fatigued patients more often used stimulant medication (64% versus 40%, P?=?0.02).

Severe fatigue was associated with a significantly increased functional impairment, increased depressive symptoms and a lowered general quality of life.
In conclusion, a majority of patients with narcolepsy suffer from severe fatigue, which can be distinguished from daytime sleepiness, and results in severe functional impairment.

2011 European Sleep Research Society.

I wonder if there are also narcolepsy patients with severe fatigue, but not daytime sleepiness (Epworth Sleepiness Score measures how likely you are to fall asleep during the day).

Narcolepsy has been associatied with ME
 

Mary Poppins

75% Smurf
Messages
560
I think with some versions of ME that the neurological synapses and chemical functioning do mimic some symptoms of Narcolepsy. Hence, the treatment of some ME survivors with dexamphetamine.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
i wish we could get xyrem for sleep problems like narcolepsy, which i think will never happen in australia.
Sleep deprivation definately makes my ME symptoms worse but even when having a few good nights in a row there is still that something holding me back from feeling 100%, but good sleep wouldnt go astray.

cheers!!!
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Every med, herb....anything, I take to push my system, regardless of the dose, will inevitably result in a crash. This is true even if I sit still and not do an ounce of physical exertion. Physical, mental, infectious, and even chemical exertion, will all cause me to crash. I hear this a lot, so be careful with these meds that stimulate the system.

Personally, I think that if something like Provigil or Adderall gives a person enough energy to function at significantly higher levels for prolonged periods without causing a crash, I would highly doubt they have me/cfs.
 

Mary Poppins

75% Smurf
Messages
560
People experience ME is different ways, Tristen. Different bodies, different responses, different reactions. The thought process behind the prescription of dexamphetamine is to counteract a neurological chemical imbalance. I'm sure there are side effects, and I suspect that what you've expressed about the exert = crash is true for some people. There's been a lot of positive feedback about stimulants being prescribed for ME also.
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
A form of narcolepsy?

I think that a few years ago when I was at my worst, that I had some form of narcolepsy. I also lost time during that period. Then it suddenly changed to the opposite where I could not fall asleep. I seem to be going into a direction of more normal sleep now. I did take a high dose of dextroamphetamine but am now down to a low dose which is also helping with the dysautonomia (Dr. Rowe)

glen
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I had narcolepsy from 1990 till July 2005. For some reason, my seemed to be from eating wheat. This symptom simply vanished 7 - 10 days after I eliminated wheat. And I've found out over the years that I'll get this again if I accidently eat any wheat. I still have fatigue / body weakness unfortunately. x
 

Mary Poppins

75% Smurf
Messages
560
Wheat tends to make me sleepy too, xchoc. A few times I've fallen asleep during meetings, lol. How embarrassing. But funny!
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
What's xyrem? Prolly should google it myself, lol.

brand name for sodium oxybate, the sleep med used for narcolepsy mentioned in my "narcolepsy linked to ME" link in post #1.

the med has street value and can be used for a nefarious purpose, which seems to be why FDA has refused to list it for fibromyalgia (presumably same goes for ME/CFS), despite efficacy data, since FM (and ME/CFS) is a lot large population than narcolepsy-alone. it's a shame that the bad guys out there are keeping us from a med that could help us.

I used to fall asleep at inappropriate times a lot, too! but now I find it really hard to sleep during the day. things seem to change over time.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
People experience ME is different ways, Tristen. Different bodies, different responses, different reactions. The thought process behind the prescription of dexamphetamine is to counteract a neurological chemical imbalance. I'm sure there are side effects, and I suspect that what you've expressed about the exert = crash is true for some people. There's been a lot of positive feedback about stimulants being prescribed for ME also.

I agree that a crash is less likely when supplementing or supporting a deficiency, such as with a hormone like Cortisol...but even that will cause many PwME to crash. I don't know the drug Xyrem, but if it's supporting an endogenous neurochemical deficiency, then it's probably much safer than those without an innate function and are just CNS stimulants. It's been my experience that stimulants are just a short term fix with an eventual catastrophe. That's my experience, that I've also seen reported by many PwMe, and by my me/cfs doc who follows thousands. But, one thing we know about treating this disease, is that what works for one person, may or may not work for the next. Very complex disease. So, If the meds work, great! I was just a sharing out of care and concern, a word of caution.

Researching Xyrem, it's considered a CNS depressant. I had assumed the drug was a stimulant because of the talk about treating narcolepsy, etc. Apologies for my response in that regard. Some very interesting info on this drug.
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
My Experience With XYREM

I took XYREM for about 6 years, until my insurance refused to cover it any longer. A sleep specialist MD had prescribed it to me under off label use after analyzing the results from my sleep studies.

The company that makes XYREM was able to get a very odd combination of drug classifications for XYREM, as well as exclusive rights to manufacture/distribute (in USA). I do not remember all the details, but it was quite a controversy. When the company raised the price (> $2000 a month) again in the Spring of 2010, my medical insurance provider refused to cover it any longer.

XYREM is not a stimulant. You take it at bedtime and once again about halfway through the night. I believe it forces you into good quality REM sleep. I do not recall the physiological details as to how it does this. It is my understanding that the REM stage is very critical to the restoration/recuperation of the body. I also seem to remember that this is the sleep stage in which growth hormone is created/released?

I have tried dozens of prescription medications over the years in an attempt to treat my ME symptoms. Of these medications, I only found three that I believe helped me. XYREM was on the top of the list. It removed my daytime sleepiness. I still had many other debilitating ME related symptoms, but just getting rid of one symptom was beneficial.

I should also note that I had experienced some symptoms related to narcolepsy, but definitely did not have full blown narcolepsy. Since very early childhood, I had suffered from hypnagogic & hypnopompic hallucinations during sleeping hours. Once I started the XYREM, at about age 40, I have not had another episode. This includes that last 15 months that I have been off XYREM.
 

Mary Poppins

75% Smurf
Messages
560
I agree that a crash is less likely when supplementing or supporting a deficiency, such as with a hormone like Cortisol...but even that will cause many PwME to crash. I don't know the drug Xyrem, but if it's supporting an endogenous neurochemical deficiency, then it's probably much safer than those without an innate function and are just CNS stimulants. It's been my experience that stimulants are just a short term fix with an eventual catastrophe. That's my experience, that I've also seen reported by many PwMe, and by my me/cfs doc who follows thousands. But, one thing we know about treating this disease, is that what works for one person, may or may not work for the next. Very complex disease. So, If the meds work, great! I was just a sharing out of care and concern, a word of caution.

Researching Xyrem, it's considered a CNS depressant. I had assumed the drug was a stimulant because of the talk about treating narcolepsy, etc. Apologies for my response in that regard. Some very interesting info on this drug.

I think its really important to be very mindful that there's people from many countries with many diverse experiences reading and posting here. Most of us are on Struggle Street, and are doing the best we can in a less than ideal situation. I'm sure many would agree that respectful cautionary words of care are always appreciated. We all experience enough discrimination and judgement from a society that neither understands, or cares. Asking about other ME survivors therapeutic choices in ways that encourage dialogue can be difficult when one doesn't agree with the decisions made, however it is such a positive communication tool to develop.
 

Mary Poppins

75% Smurf
Messages
560
Tristan, I didn't mean to make you feel attacked. Sorry of it came across that way. That certainly wasn't the intent.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I couldn't even tell you were including xyrem in the stimulant discussion, Tristen. I just assumed you knew what you were talking about and were referring just to the other med which had been brought up (ADHD/narcolepsy treatment from post #2, which is a stimulant). :D
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
I couldn't even tell you were including xyrem in the stimulant discussion, Tristen. I just assumed you knew what you were talking about and were referring just to the other med which had been brought up (ADHD/narcolepsy treatment from post #2, which is a stimulant). :D


Your right, I was primarily responding to the posts on stimulant meds, and because of that, sharing my experience with all CNS stimulants. Left at that, the posts seemed quite appropriate to me too. But, I was also thinking that Xyrem was in that class of drugs and was therefore, at least in my mind, including it with my words of caution about these drugs.