The best narcolepsy advice I've ever gotten was _____.
What is the best advice you've ever gotten on living with narcolepsy? How has this advice positively influenced your narcolepsy journey? Please share below.
Hi Lori, I miss talking to you. I made it to the top. I was accepted as a patient at Barrow Neurological Institute in Phoenix for treatments. It's good to be able to have that for documentation but I can run circles around my doctor. I'm a neurodivergent that has found out that Narcolepsy took my appetite away, that isn't a good thing when you're hypo- glycemic. Sugar does some amazing things to me now. I couldn't believe what happened when I started eating again. But I still have memory issues and forget to eat still. I'm on 250mgs ER modafinil with a script for Wakix nobody will fill.
How awesome that you were accepted as a patient! Hypo-glycemia can be really dangerous if left untreated. I'm glad you were diagnosed. Any idea why pharmacies won't fill your Wakix prescripion? - Lori (Team Member)
Ok, I want to first tell you I am a neurodivergent living with Acute Narcolepsy type 1 w/cataplexy and here's my description.
Narcolepsy comes from the hypothalamus region of the brain not functioning right so it doesn't produce enough hypocritine/orexin-1 to fuel our bodies. I feel there's a connection between the hypothalamus region and a malfunctioning adreanal gland that isn't producing the corticosteroid (cortisol) that our body uses to digest histimine with that are the 2 types of fatigue associated with NT1. I have COPD and I was given Prednisone for a month and my life was wonderful. Doctors are missing the connection between a malfunctioning (hypo) adreanal gland and histimine caused fatigue and because their book says long term use will effect the adreanal gland. The adreanal gland that came effected from the factory (hypo). Our body needs a supplement that we don't get from our adreanal gland so long term use isn't going to do any harm. Now to back up my claim about a malfunctioning adreanal gland what happens when we have a cataplexic event? What causes one to happen? Emotion usually strong when it happens and what happens when we get excited, an adrenaline rush, what causes cataplexy is our adreanal gland overloads our system because it's malfunctioning.
My take not entered as fact;
Doctors are taught that only the $15,000 a month pills will help, but help what? Big pharmas record profits is what. Learning from other treatments that the $50 a month meds will do 10X what the $15,000 a month meds does but big pharma can't produce record profits from selling $50 scriptsThank you, it all has to do with the "delivery" of my medication. I'm experimenting with that to be able to provide some insight as to "what happens when" information. I stopped making my own sugar liquid too to see what its effects are. I also think I'm allergic to Armodafinil or something in it. I've been breaking out since I started taking it, yuk ! Maybe you can stop Armodafinil for a while and see if the rash begins to subside. Then, with your doctor's supervision, you can try again and see if it returns. Best to get your doctor involved though. If you are allergic, the next reaction might be more serious and potentially life-threatening. - Lori (Team Member)
A therapist working with me on narcolepsy becoming disabling told me “ Your smartphone is your friend.” It really helps to use it for reminders, alarms, staying in contact with supportive friends and family. Now I’m on top of things and feel connected to people that care about me.
What a great idea! I'm glad you ended up with that particular therapist. Thanks for sharing. Warm wishes. - Lori (Team Member)
Keep a log every day and share it with your doctor
