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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
464 questions

Anyone Else Have Hormone Issues Possibly Caused By Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
Holland, MI

I’ve been noticing a slow decline in my health and many are hormone based. I’m seeing an endocrinologist in a couple weeks.

A MyNarcolepsyTeam Member

I have not had any issues with hormones, What I have noticed is that I now am diagnosed with other autoimmune syndromes. hypothyroid and Sjogren's. Very strange

August 8, 2023

Treatment Options If Your Doctor Can't Help.

A MyNarcolepsyTeam Member asked a question 💭
Fort Pierce, FL

Many years ago I was a long haul truck driver and we used Benzedrine and Dexedrine to stay awake, I know the source for these drugs has probably vanished but has anyone possibly tried either of them ?

A MyNarcolepsyTeam Member

Yeah it’s hard to get vyvanse or adderall with out a diagnosis and with out ADHD. I drink lots of coffee take guarana caffeine pills and energy drinks. Would rather be treated with stuff for… read more

March 5

How Do You Exercise When Your Meds Aren't Working And You Can Barely Get Out Of Bed- LITERALLY?

A MyNarcolepsyTeam Member asked a question 💭
Dexter, IA
A MyNarcolepsyTeam Member

Great advice Rita2

August 4

My Daugh 21 Yrs Has Narc 2 Doesn’t Seem To Be Interested In Trying Get Job In Day. Sleeps All Day Delivers Uber Eats At Night. Skips Dr Appt

A MyNarcolepsyTeam Member asked a question 💭
Austin, TX

Narcolepsy 2, adhd, addiction but lives in sober living & sober, sees sleep dr, hoarder, raised by her grandparents. Uses excuse not her fault because of her narc. Doesn’t seem to want to change. Any ideas how to make her want a better life?

A MyNarcolepsyTeam Member

Wow! You have a wonderful outlook. Very wise. I know this disease is so hard to live with and my prayers for my granddaughter (my husband and I raised her from 4 yrs old so she is our daughter) that… read more

January 12

Long Or Short Sleepbreaks?

A MyNarcolepsyTeam Member asked a question 💭
Gothenburg, NE

Hello. My son is 11 years old and was diagnosed when he was 7 years old. I have a question about rest during his school day. Today he rests for an hour around 11. I wonder if you would prefer several short sleep breaks instead of one longer one? Do you feel as rested after 60 minutes as after 15 minutes?

My son does not take any medication and school works well and he has good support from his teachers.

A MyNarcolepsyTeam Member

I honestly think it’s amazing that he had the self awareness and confidence to say no to the medication, which is another clear indication that you as parents must be an amazing support system for him… read more

December 13, 2023

Traveling For The Holidays? If So, Can You Share Your Favorite Travel Tips?

A MyNarcolepsyTeam Member asked a question 💭
San Francisco, CA
A MyNarcolepsyTeam Member

@ Holly yes my friend that is very good advice. Your family does the exact same thing when out and about by myself.😂

April 1, 2023

Has Anybody Had A Lumbar Puncture Done? My Insurance Will Pay For The Procedure But Not To Send It To Rochester Mayo Clinic. 😢

A MyNarcolepsyTeam Member asked a question 💭
Naples, FL
A MyNarcolepsyTeam Member

Another question. I had a lumbar puncture test in February because I had severe headache with vomiting and confusion several days. The drs were testing for meningitis and pressure which were both… read more

October 30, 2023

Fitbits, Smart Watches, Etc. - How Accurate Are They?

A MyNarcolepsyTeam Member asked a question 💭
Southern Illinois

I've been keeping a sleep journal for a couple of weeks now. The journal includes Fitbit readings (for what they're worth) of sleep cycles. One thing struck me as odd: most of the articles that I have read on sleep cycles mention that people cycle into REM within 90 minutes *on average*, then they become more frequent in the second half of the night. Mine seem to be a bit haywire. I usually fall asleep about 8:05 p.m. and up about 4:30 to 4:45 a.m. Again, for what the readings are worth… read more

A MyNarcolepsyTeam Member

I recently got a new Galaxy Watch5. I think the sensors are pretty good. Not only does it record my sleep in great detail (and auto starts), it monitors my O2 level, my skin temp, my heart rate, and… read more

October 4, 2023

Has Anyone Else Used Illegal Stimulants And Then Discovered Why Later Life When You Were Diagnosed With Nargosy

A MyNarcolepsyTeam Member asked a question 💭
Layton, UT

Don't judge me. This coming September I will have 4 years clean and sober. Since I was 25 and I have abused methamphetamine. And it didn't really get me high it just allowed me to function and do things that everyone else was doing my age. Has anyone else found that they were literally self-medicating with stimulants?

A MyNarcolepsyTeam Member

Lol i still self medicate alkng with the meds so im not judging girl! But sudafed - that shit knocks me right out! I get the initial blast for about 15-20 min and then im out for 12!

July 12, 2022

Type 2 Narcolepsy

A MyNarcolepsyTeam Member asked a question 💭
Fort Wayne, IN

Hi everyone 👋🏻 Wondering if anyone else here has type 2 narc? (Narcolepsy without cataplexy) I’ve tried researching it but even less is known about type 2 than 1. Just going through the motions..

A MyNarcolepsyTeam Member

I was told I have narcolepsy from a doctor but never had the sleep test to see what kind I have!

June 3, 2022
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