Yes, I have fibromyalgia, Chronic Fatigue, sleep apnea and use oxygen too! Plus Narcolepsy and a lot of other things wrong with me!
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.
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.
I'm going to purchase luminette 3 glasses to help with my EDS. (Edit: I removed "blue" from my question since I noticed I may have misnamed them.)
Here's the wording from the Luminette 3 website
Luminette® emits a safe blue-enriched white light peaked at 468 nm. This wavelength is proven to be the most effective at triggering the body's… read more
Don't fight it, go with the flow, and great tips above.
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
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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
I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.
I regret your negative experience Lisa. CBD can be purchased locally (my home in sw La.). My online purchase came from Able Farms. They have a "CBD Sleep Dropper". My current prescription sleep… read more
I want to know about one of your best days you have had with your narcolepsy. Tell me how you felt, who you were with , everything.
I hate to answer this question because my BEST DAY is Thursday is my first day off I sleep the whole 24 hours my children are grown I have a dog I do take her out a couple times but I do not get out… read more
I have been taking adderal for a good 15 years. The highest does and is not helping. I took adderal originally for adhd. But it doesn’t seem to work anymore. Do you have any suggestions?
Provigil to stay awake during daytime, but doesn't help with concentration and focus.
Since the hypothalamus gland is affected what type of symptoms have you experienced besides excessive sleepiness?
Not sure if all of my bizarre symptoms are directly related to narcolepsy but some might be.
The symptoms I am trying to figure out are :
Low grade fevers (10-15 per month)
Subclinical hypothyroidism with normal t3 &t4
Extreme chocolate milk craving (about 40oz a day)
No appetite, without weight loss , no thirst either
Very interested in others symptoms, sometimes patients can… read more
I used to get low appetite when I'm sleepy during the day and hunger attacks at night when I wake up. This in the long run led to undernourishment. Thankfully, my neurologists have prescibed a… read more