What Is Your Morning Routine? | MyNarcolepsyTeam

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What Is Your Morning Routine?
A MyNarcolepsyTeam Member asked a question 💭
posted September 2, 2022
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A MyNarcolepsyTeam Member

Get as much ready the night before. No snooze alarm! Jump up out of bed! Eat a good breakfast with protein and healthy fat. Coffee!!

posted September 10, 2022
A MyNarcolepsyTeam Member

My alarm goes off at 4am, force myself into shower, eat light breakfast take first meds at 5am, read, nap as my alarm is set before 630am as that's when I leave for 40min drive to work.read. work starts at 8a.m. drinking frappuccino to get going ....more meds about 12 noon and again at 4p so I can drive home 🏡

posted September 10, 2022
A MyNarcolepsyTeam Member

I don’t use my phone in the morning as soon as I get up for the first hour, I eat breakfast and take my meds, then journal for a bit, read 5 pages and stretch

posted September 9, 2022
A MyNarcolepsyTeam Member

Do know any thing about using essential oils fir treating narcolepsy symptoms? I have just started using them and Frankenscence seems to help energize me and keep me awake somewhat during the day. Many of the supplements you mentioned my Neurologist also suggested for my migràinei like headaches'.take care blessings... samiam

posted October 13, 2022
A MyNarcolepsyTeam Member

Wow Marc, I am so sorry that is how you are having to survive. It breaks my heart. I know the day will come when I am unable to function safely in the workplace. I am only able to function as well as I do by practicing keto and exercise, but I only have type 2 narcolepsy. It does appear to be worsening as I age. I use supplements and small amounts of caffeine to get through a work day, as well as a nap in the car at lunch. I don't know how others feel about this, but honestly, the meds made my narcolepsy worse, and added a list of side effects to go with it, so I decided to go med free. I too was once managing with huge doses of caffeine, mostly black coffee and energy drinks, and I even kept caffeine pills in my purse, and I did exactly what you stated, developed high blood pressure, anxiety, racing heart, chest pains, etc. It is no way to live. I have kind of lost faith in the medical community, not just because of my narcolepsy, but how pharmaceutical companies make so much money but if you're uninsured and poor or even middle class, you are just out of luck when it comes to treatment. It's so wrong, because narcolepsy isn't something we asked for, and we want to lead productive, happy lives. To top it off, you basically have to have health insurance and a long history of failed medical treatments to qualify for disability, and yet narcolepsy isn't on the list of identified disabilities for social security. But what if you aren't willing to subject your body to the gold standard of treatment for narcolepsy, stimulants? Then most doctors have nothing to offer. There are some new drugs and treatments out there now, but the battle with the insurance company I went through to even do a trial of one of them, was not worth the hassle, especially after I developed a bad mental reaction to it. It's just a nightmare to navigate, especially when most days you're too tired to even bathe, or prepare food and no one seems to understand or care. I'm grateful to have found this community. Anyway, I hope that your circumstances change soon and you can find some relief.

posted September 7, 2022

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