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Hi, just wanted to introduce myself. I'm Karina and am 30 yrs old. I was given a possible diagnosis of Narcolepsy a few months ago after a sleep study. Was hoping to chat to others with narcolepsy and get to know how other people's symptoms are and how they deal with it. I am a little unsure whether I have this as I believe some of my symptoms may also point to ME/CFS so I am hoping to educate myself on both.

Would be interested to know if anyone else has this problem and what would be the main distinctions between the two?

Hi Karina, what are your symptoms other than excessive daytime sleepiness?

Hi pwntek,

I would say Brain Fog (unable to concentrate/find words/difficulty in following conversations), difficulty in regulating my body temperature, dizzyness when standing up, itchy skin, mild IBS, depression.

Do narcoleptics always have problems falling asleep in public or during the day? I have found that since I have been off sick from work my problem with nodding off all the time has decreased - although the constant fatigue has not changed.

Without treatment, we can definitely have trouble with irresistible drowsiness at inappropriate times no matter how much sleep we get at night. Are you getting more rest since you're not working, Karina?

Welcome Karina.

Excessive daytime sleepiness has always been my major problem, Brain fog muscles fatigue etc… If sit down for a short time I almost always fall asleep for quick little naps or zone out my brain shuts down so my eyes are open but nobody is home.

Hi Karina~ Welcome to our group. What is ME/CFS? Thank you.

I hope you find the answers you are looking for here. Everyone is very giving and hopeful even on their worst days.

Thank you for your replies.

Yes, since I've been off sick I have been spending my days resting (watching tv/reading/working on the laptop) and only doing small things everyday so as not to exhaust myself. Before going off sick I was nodding off while having my cup of tea in the morning, on the bus to work, standing waiting on lifts and while I was using the computer. The constant nodding off has eased a lot now I'm not pushing myself so hard everyday. Although when I overdo I have to have a nap.

Well, Karina, dizziness when standing can result from 'orthostatic hypertension', which people with narcolepsy (pwn's) are prone to. Regulating body temp (thermoregulation) is often a problem, and we are prone to depression as well. The part that does not seem to fit as a symptom of narcolepsy is muscle ache (although we are more likely to have back and neck pain). Do you have allover aches?

The aches have been mainly in my neck, shoulder and back but also in my legs and arms when using them i.e going up stairs or washing my hair. Also get pains in my hands, elbows and ankles now and again.

Thanks for helping pwntek, the symptoms all seem very similar. Makes it very difficult to know.

Hi karina,

I have muscle ache like you describe. I call it muscle fatigue. Sometimes going up a flight of stairs my legs will ache so bad that I have to sit down until it goes away. I do a lot of physical hobbies and find that all the above happens and have to stop.

I also lost my eyesight while standing in a hospital. I was extremely tired. A nurse took me to emergency and a neurologist and ophthalmologist were called. They did an MRI which did not show anything. The Neurologist suggest a nap. They woke me after 45 minutes and everything was fine. They said it was caused by narcolepsy and my neurologist agreed when I had a follow up .

The neck, shoulder and back aches are common in narcolepsy but the rest aren't. Do you plan to see a doctor to determine what the correct diagnosis (diagnoses) are for sure?

Yes, I am still seeing the sleep studies consultant and am waiting for an appointment for the M.E clinic. I guess I am looking to get things sorted in my head!

Wishing you the best of outcomes, Karina! :-)

Karina said:

Yes, I am still seeing the sleep studies consultant and am waiting for an appointment for the M.E clinic. I guess I am looking to get things sorted in my head!