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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
I was diagnosed in 2015 which was my first and only test; should a patient be tested again after so many years
@A MyNarcolepsyTeam Member Hello 👋🏾
I am also waiting for another study
Which is scheduled for August.
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.
I had droopy eyelids 40 years ago. This lasted months or longer. Since there several possible causes including disease, I saw an ophthalmologist. I wanted treatment for the cause not treatment for the… read more
Is there any medication, beside minipress, that helps with nightmares? The minipress dropped my blood pressure too low (which it is intended to do being a high blood pressure med) so I couldn't use it. It did help while I took it.
Yeah I don’t know if I got H1N1 in 2010 because I never got checked but at the same time that virus was going on I got really sick. I was in bed for about 3 days high fever. I might have had it and… read more
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
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 have a lit of symptomsit is driving me crazy
I agree that something is in the air and the window of compassionate doctors is growing thin. They make patients go through hell and back to get any diagnosis these days. I noticed a big change during… read more
Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.
https://investors.avadel.com/news-releases/news...
MichaelYJ did your 2nd dose get you to sleep? Do you eat your dinner hours before you go to bed?
Just curious if your stomach is full, you will have slow absorption. If your last meal was finished… read more
With for the last 5 years I've had all incidents of falling asleep without being wake up. Mostly happens when I'm very stressed out or very angry. I have found myself falling sleep at restaurants ,at my job and at home where nobody can get me to wake up or respond. Is there a thing called stress related narcolepsy? Can some help. I will be going to specialist when I got insurance again. Thanks for your time.
I hope it goes very well!
Does anyone feel embarrassed by having narcolepsy? It use to bother me really bad. I accepted it a few years ago & was able to finally talk about it…now that people see that I’m more active than I use to be & try to depend on me to do things on time is starting to really bother me again
Yes,Jeanne..I feel the same !!