https://www.pharmacytimes.com/news/...aytime-sleepiness-in-patients-with-narcolepsy
Maybe this could help with fatigue in MECFS?
Maybe this could help with fatigue in MECFS?
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Pitolisant, a first-in-class medication, is a selective histamine 3 (H₃) receptor antagonist/inverse agonist that increases the synthesis and release of histamine, a wake-promoting neurotransmitter in the brain. Pitolisant is administered orally once daily in the morning when a patient wakes up."
There have been various theories and most somehow involve Dopamine but its not really understood conclusively.So Provigil is the current drug for narcolepsy....it works thru some other mechanism but they don't really know what...possibly the dopamine pathway.
More likely your brain is not producing Orexin yet. Without it you can be awake but you typically feel groggy or brain fogged or like you could fall asleep again.It takes me a very long time to wake up...I must not be producing...much histamine in the morning.
or like you could fall asleep again.
Its really hard to say what is causing it, tiredness can come from low cortisol or high GABA or hypothyroid or dozens of other possibilities..... I can often just keep going back to sleep in the mornings...almost indefinately. I rarely ever want to get up. If I'm a bit PEM, its even more intense. I sleep 9-10 hours. Of course, whatever this sleep is, is non-refreshing. After around 2 pm, incredibly sleepy again...often sets in.
I may not try this drug if I was suffering from MCAS.What would it mean to have more histimine in the body if one is dealing with issues like MCAS and/or mast cell issues....?
Are you sure low Orexin isn't involved in ME/CFS or even in a subset?Histamine's role in wakefulness has been known for a long time (and how antihistamine allergy medications cause drowsiness).
So this drug is not surprising. But i doubt it will do much for ME patients.
Narcolepsy is caused because Orexin is not being produced. Orexin is like a conductor in an orchestra, it modulates wakefulness by modulating virtually all the common neurochemicals (serotonin, dopamine, acetylcholine, histamine and many more).
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If it is involved then we would have symptoms of narcolepsy.I may not try this drug if I was suffering from MCAS.
Are you sure low Orexin isn't involved in ME/CFS or even in a subset?
Certainly there is a ME/CFS subset with subclinical seronegative neurosjogren (possibly associated with low Mannose Binding lectin), and in a study on fatigue in SS patients:
"The main findings of this study indicate a functional network in which several IL-1β-related molecules in CSF influence fatigue in addition to the classical clinical factors of depression and pain.
The neuropeptide Hcrt1 seems to participate in fatigue generation, but likely not through the IL-1 pathway. "
Has anyone tried this?