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Narcolepsy

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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.
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What Are The Newest Meds For Narcolepsy?

What Are The Newest Meds For Narcolepsy?

A MyNarcolepsyTeam Member said:

Please be careful, I just read the drug interactions and it does not interact well with hormonal meds such as birth control or post menopause hormones. I unfortunately can’t use it.

posted about 2 months ago

How Do I Get Drs To Take Me Seriously?

How Do I Get Drs To Take Me Seriously?

I've been to sleep drs., resulting in a Cpap. Neurologists, etc. They won't even discuss narcolepsy because I don't "fall down when I laugh"!! My cousin had narcolepsy (now deceased) so I know how difficult it is to get a diagnosis. What should I do next?! I've been miserable with this since high school (I'm now 70!)

A MyNarcolepsyTeam Member said:

Keep fighting to have a sleep study. If your doctor is not listening try a new doctor.

posted 24 days ago

My Medication Doesn't Always Work

My Medication Doesn't Always Work

I take 40 MG of Adderall XR twice a day and have been for a long time. Now my morning dose isn't always effective sometimes for 2-3 hours ornot at all. The 2nd dose still does ok. I can't continue to live like this and my sleep Dr didn't pay any attention and just made me an appt for next year!! I'm so frustrated.

A MyNarcolepsyTeam Member said:

I have been on Dexadrine(ER, 15 mg.) during the day,for years and it works well for me and if I have a evening activity ,I take a 5mg at 2p.m. to get through the p.m. !

posted 2 months ago

What Will Help With The Nightmares And The Brain Fog?

What Will Help With The Nightmares And The Brain Fog?

I have recently been diagnosed with narcolepsy without cataplexy. I'm on Adderall 30 mg 3x daily. I've noticed if I don't get a good 10-12 hours of sleep, my Adderall won't work as well. I still have severe brain fog, embarrassingly amounts! I have nightmares so realistic I have to go check on my family. My doctor said he doesn't want me on either med typical for narcolepsy as it can cause Steven's Johnson syndrome. What can help with this? Medicine or otherwise. Thank you
Miranda Dodd
read more

A MyNarcolepsyTeam Member said:

I had brain fog and found nutrient ..anagamic...a sublingual worked miracles..get oxygen to your brain...Nutrients are the big thing as narc. is a deficiency...The nitemares are like alcohol d- ts… read more

posted 3 months ago

Cataplexy

Cataplexy

Is there anyone who has experienced cataplexy on a daily/regular basis? & If so what exactly do you experience during an attack? Was anyone misdiagnosed with Pots or epilepsy?

A MyNarcolepsyTeam Member said:

I take meds for cataplexy. On a daily basis I experience slack face muscles..especially around my eyes...any emotion makes my face muscles just relax..mostly on my right side. My eyelids are the… read more

posted 3 months ago

Does Anyone Go Through Feelings Of Your Mind And Brain Being Frozen?

Does Anyone Go Through Feelings Of Your Mind And Brain Being Frozen?

Every afternoon I go through this period of feeling like my brain isn't working right. I'm aware of all my surroundings, but feel completely focused. It's so hard to explain. Even the inside of my head feels different. Almost like out of body experiences. When that happens I'm not able to function well. I continuesly fall asleep. I just can't talk either, cause I don't remember what were taking about and all of a sudden I start talking about something way off the subject at hand. This has been… read more

A MyNarcolepsyTeam Member said:

I only deal with family member that I know I can trust I have no friend just family people try to take advantage of me when im in a fog

posted 4 months ago

Teenager With Narcolepsy

Teenager With Narcolepsy

I have a teenager with narcolepsy who is really struggling. He has had averse reactions to medications and has a hopeless attitude. I can see how much he is struggling and suffering. When I try to help him and make suggestions, he gets angry with me and frustrated. He has a lot of supports in place but he is in the worst place right now. How do I support him and support myself at the same time? It is so hard to be a mother and feel this helpless.

A MyNarcolepsyTeam Member said:

It sounds like he is suffering from depression also. That needs to addressed so he can feel better. Depression makes you tired during the day also complicating narcolepsy.

posted about 2 months ago

Narcolepsy And Disability

Narcolepsy And Disability

I have narcolepsy. Which explains so very much now. Alot of things make sense. I won't get into my whole sappy life, so here goes my question
I have multiple diagnoses
2 open heart surgeries for mitral valve replacement. Uncontrolled diabetes Ii, HBP, cholesterol, CHF, Rheumatic Heart Disease, Fibormylgia, back pain, Gastrointestinal issues, marjor depression, anxiety, PTSD....and newly diagnosed Narcolepsy. What are my chances for getting approved for disability??? I'm worn out… read more

A MyNarcolepsyTeam Member said:

Get eating healthy..Kick the junk to the side..All your conditions can improve...Dr Amen on line His wife has nutrition info for the brain
Good luck and find substituted for junk and do it because… read more

posted 3 months ago

Does Anyone Have To Stop At A Parking Lot To Nap For About 20 Min If They Have A Long Drive Even After Taking Modafinil 200mg?

Does Anyone Have To Stop At A Parking Lot To Nap For About 20 Min If They Have A Long Drive Even After Taking Modafinil 200mg?

A MyNarcolepsyTeam Member said:

Definately cant drive for more that an hour straight..modafinil 200mg plus a Monster energy drink and loud music..still the road noise can lull me to sleep...I actually have been in an awake but not… read more

posted 3 months ago
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