Cystic fibrosis related Narcolepsy????

Incomudrox

New member
Someone enterain me here.... this is my running theory.

Narcolepsy is believed to be caused by hypocretin cell death in the brain. It is also believed that this happens in some cases due to a autoimmune response.
Cystic Fibrosis can someone have autoimmune issues as we well know. A lot of us have issues sleeping or staying a sleep for one reason or another.

My theory is that CF's autoimmune "feature" is killing off hypocretin cell receptors in the brain, thus resulting in "Cystic Fibrosis related Narcolepsy"????

Anyone??? Bueller????
 

Incomudrox

New member
Someone enterain me here.... this is my running theory.

Narcolepsy is believed to be caused by hypocretin cell death in the brain. It is also believed that this happens in some cases due to a autoimmune response.
Cystic Fibrosis can someone have autoimmune issues as we well know. A lot of us have issues sleeping or staying a sleep for one reason or another.

My theory is that CF's autoimmune "feature" is killing off hypocretin cell receptors in the brain, thus resulting in "Cystic Fibrosis related Narcolepsy"????

Anyone??? Bueller????
 

jbrandyn

New member
I have no idea but it seems like a good theory.
I have thought that I have narcolepsy more than once... I wake up/ can't go to sleep whenever I have a hard time breathing or if my O2 sats get to low...
 

jbrandyn

New member
I have no idea but it seems like a good theory.
I have thought that I have narcolepsy more than once... I wake up/ can't go to sleep whenever I have a hard time breathing or if my O2 sats get to low...
 

Marshyl

New member
I'm not sure about Narcolepsy, but my doctor who specializes in both CF and sleep disordered breathing told me that up to 25% of people with CF also have sleep apnea, of which I was recently diagnosed. It couldn't hurt to bring it up next time you see your doctor.
 

Marshyl

New member
I'm not sure about Narcolepsy, but my doctor who specializes in both CF and sleep disordered breathing told me that up to 25% of people with CF also have sleep apnea, of which I was recently diagnosed. It couldn't hurt to bring it up next time you see your doctor.
 

coltsfan715

New member
Okay I feel a little confused reading this post. I was under the impression that Narcolepsy was the tendency to get tired and actually go to sleep or take naps throughout a day. In reading the original post it sounds like you are saying Narcolepsy would cause you to wake up and not be able to go back to sleep.

Either way - exhaustion can be caused for several reasons for us. I personally had severe fatigue symptoms before I was diagnosed with CFRD. I still get extremely tired and will fall asleep without much warning or struggle to stay awake if my blood sugar gets too high (normally between 225-250). I sometimes wake up in the middle of the night and am unable to go back to sleep, when that happens I am normally having a low blood sugar episode. I will wake up out of a dead sleep and even if I am still tired be unable to doze off again.

Also as mentioned sleep apnea can cause a person to not feel rested when they sleep so they are still tired throughout the day. Not getting enough oxygen can also cause a person to wake up and can cause anxiety and an inability to go back to sleep. Use of pain meds and some other medications can cause us to become tired and doze off intermittently as well.

I think the theory you raise could be possible, but I think there are too many other things to consider that could affect a CFers sleep habits or patterns.
 

Incomudrox

New member
Classic narcolepsy you are constantly tired but also have a hard time staying asleep. In some people it can mean falling asleep as soon as you hit the pillow and some you struggle to sleep. Usually depends on how much hypocretin you have left. Another sign of narcolepsy is when you do fall asleep you dream almost immediately. Other things like feeling as though your brain can not take in any more information can be signs.

We know diabetes is sometimes a result of disrupted sleep schedules. So it's more a question of which came first the chicken or the egg.
 

coltsfan715

New member
Thank you for the clarification on that. I didn't know that because quite honestly I never really looked into narcolepsy at all.

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Lindsey
 
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