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How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy?

How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy?

I think that people here, Wales, do not understand about narcolepsy. It is certainly very unusual and I have never met anyone with the same condition. The consultant, who originally diagnosed it and was very supportive, sadly left (not because of me!!)and my doctors here don't seem to understand. One even told me that I should not have a sleep during the day! Thankfully, my family and close friends are supportive but, I am sure, a lot of people think I am lazy!

posted November 20
A MyNarcolepsyTeam Member

Dear Five Star, sorry to hear that your family are not that supportive. Trouble is, I think, that there is not enough known about narcolepsy. I have seen a documentary on the tele (here in the U.K.)… read more

posted December 1

Can This Be Believed?

Can This Be Believed?

Emmanuel Mignot wins Breakthrough Prize for discovering cause of narcolepsy

https://med.stanford.edu/news/all-news/2022/09/...

posted November 18
A MyNarcolepsyTeam Member

Yes BUT this is only true for type 1 narcolepsy. Scientists now believe that type 1 narcolepsy could be autoimmune in origin due to a gene found in 99% of NT1 patients. (for those interested, HLA… read more

posted November 19

I Need Medication Advise

I Need Medication Advise

I’ve been taking 15mg of adderall 3 times a day. Most of the time it works, I just hate the crash at the end of the day and I feel like it changes my personality. My Dr. Called in Sunosi but my pharmacy has to order it. She says I can just take Sunosi and stop adderal. Has anyone tried this? I’m afraid I’ll have adderal withdrawal. I’m afraid it won’t work. Neither modafinil or armodifinl worked for me. I hate figuring out what works to keep me awake during the day. Any advise is greatly… read more

posted November 11 (edited)
A MyNarcolepsyTeam Member

First, consider this: your modafinal and armodafinal failed because it didn't give you the clarity and sharpness you were expecting. Perhaps your expectations were assigned incorrectly!

Let me… read more

posted November 29

Glorious Dream

Glorious Dream

Due to my narcolepsy, I have bad dreams and occasional nightmares EVERY night. They are the bane of my life and I hate going to sleep. They color my days with pain. Last night I had an incredible dream of taking a wandering drive with Tim (who is deceased) that turned into a rural heaven. The single lane dirt road was lined with heavy growth on both sides, mass profusions of lilacs, hydrangeas of all colors, calla lilies, white striped with red clematis dangling from the tree, tall delphiniums… read more

posted November 9
A MyNarcolepsyTeam Member

Be careful what you ask for! My deceased mother was the center of one of my dreams. It was so real that when I woke up, I got dressed to meet her and my sister (she lives 1,500 miles from me!) for… read more

posted November 29

Do You Consume Or Avoid Caffeine?

Do You Consume Or Avoid Caffeine?

posted November 4
A MyNarcolepsyTeam Member

Absolutely,...Me Too

posted November 29

Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Since diagnosed with Narcolepsy with cataplexy in 2018, I would sleep for a total of 16-18 hours over the weekend just to get rested up for the upcoming week. Now I've been sleeping approximately 10 hours if I had a day off. I still find myself dragging myself out of bed just to eat and try to be a human for a day. Does anyone hold a extensive amount of hours sleeping after working full time, raising kids and trying to just make it through the week?

posted October 28
A MyNarcolepsyTeam Member

@A MyNarcolepsyTeam Member you are 100% correct. The only meds that actually work for me is the Adderall X R
Modfaninil 200mg and Fluoxentine. My pulmonologist introduced me to xywav and xyrem but I… read more

posted November 17

Do You Experience Insomnia With Narcolepsy? Any Ideas To Help With Insomnia?

Do You Experience Insomnia With Narcolepsy? Any Ideas To Help With Insomnia?

posted October 28
A MyNarcolepsyTeam Member

Yes. I take magnesium before I get under the covers. Tried melatonin but developed resistance to it quickly. I also have a lavish nighttime routine that helps my body know I’m winding down. I also… read more

posted November 26

What Experiences Do You Guys Have With Xyrem... Does It Work?

What Experiences Do You Guys Have With Xyrem... Does It Work?

My doctor is going to start me on Skyrem (Xyrem with less sodium) and I was wondering what people's experiences are with it. Does it work well? Does it cause any negative side effects? Do you still need to take other meds to fight day time sleepiness?

posted October 26
A MyNarcolepsyTeam Member

I take Xyrem and it has really helped me get the life I never thought I could have. Just be careful with it and feel free to call the distributors for any questions! They're super nice!

posted November 19
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