Frustrated to say the least
After reading several studies done about NT1 it didn't take long to figure out some treatments done for other conditions were beneficial for narcolepsy. I was given Prednisone for my COPD that made my life wonderful but it was taken away after a month. Prednisone is a corticosteroid that among other things it does it helps the body digest histimine that builds up that when it does it causes a fatigue that the stimulants won't fix. My neurologist gave me Methylprednisolone for a week that that helped but it's a 1 time deal while I wait for the Wakix she wrote for me. She told me she was writing the script for Sunosi then wrote it for Wakix so now I'm trying to learn if they do the same things.
Hi
. Steroids can be super beneficial for many conditions, but they come with some serious side effects if you use them for too long. So, I'm not surprised your doctor wouldn't continue them. Both Wakix and Sunosi tend to come with fewer side effects than other stimulants used for narcolepsy. I hope the Wakix helps. Keep us posted, if you don't mind. I'll be thinking of you. - Lori people living with Narcolepsy have 2 strikes against them. 1 is the Hypothalamus region not doing its job right by not supplying Hypocretin/Orexin-1 in the needed levels and 2 is our Adreanal gland is malfunctioning and not supplying Corticosteroids ( Cortisol ) in the amounts needed to digest histimine causing fatigue. Case in point : When we get excited or emotional we experience cataplexy but why? When those emotions happen adrenaline levels elevate but because our adreanal glands are malfunctioning they overload the body with adrenaline causing the catapexy which in my experience is a super human ability of strength and ability until the adrenaline subsides. The long term effect issues are the adreanal gland will stop producing steroid over time ( ours have never been producing the steroid so how will it effect us )? We need a supplement to make up for the hypo production of cortisol. The studies done by the NIH, Cleveland clinic and the Mayo clinic all day the lack of cortisol is the cause of a fatigue.
