I am curious about this because my daughter and I got mono and really never recovered.
Our daughter had an unexlpianed high fever for few days before her narcolepsy started setting in. Not sure what it was as hospital told us that was something going around at the time.
Hi Zadet. I am 47 and was diagnosed when I was 23. I was fine, no virus or cold. I slowly noticed myself getting tired in drs. offices or anyplace I had to sit and relax. I used to joke that I had Narcolepsy. Then the cateplexy started slowly, I was petrified I was getting MS. Then the hypnogognic hallucinations started and the sleep paralysis, along with the lucid dreaming. I think it took about 1-2 years from the onset of extreme tiredness to become full blown. I have read we are predispositioned to get it, and that we loose a chemical in our brain that regulates the sleep/wake cycle. We are born with it but it slowly disappears for reasons unknown. Interesting that your daughter had mono first. Now I am also curious about that. Are the medications working for her?
I was tested and was dx with the Epstein Barrè syndrome and the parvovirus at the age of 30yo. I think I had mild narcolepsy before I contracted the two viruses, but it wasn't as noticeable until after I contracted the parvovirus and Epstein barre syndrome. I think mono is almost the same as Epstein Barrè syndrome or maybe they both have similar symptoms, but I'm not sure. Anyways, your doctor should be able to do a blood test and check your IGg and IGm and see if your antibodies are high and still currently fighting it off.
I had mono when I was 16, which made me depressed for a couple months. Then I got used to feeling tired, and I never really got my regular energy back. I'm now 24, and I'm feeling even more fatigued. I had my eyes checked because of blurring vision, my blood checked for infectious diseases and hormone levels, and I've been to a primary care doctor, psychiatrist, and two sleep specialists. The sleep study (overnight and sleep latency the following day) suggested narcolepsy; however, they want me to redo the test to further prove it because everyone is hesitant to use that label. To me the results of entering REM sleep in under 2 minutes various times are pretty indicative. The most frustrating thing has been the assumption that I am depressed. I admitted feeling withdrawn and frustrated when I had prolonged mono, but I haven't felt like that since. I have been living with constant tiredness for 8 years. I have vivid dreams, but no cataplexy.
I'm perfectly happy and motivated with a full-time job, and I only get frustrated/depressed when I'm forced to take a nap because my eyes are burning. That's been my experience with it in a nut shell. I hope this helps! I wish your daughter well.
i have had it for so long that i dont remember,i do have fibromyalgia though and really think it may be fibro fatigue more then narcolepsy..except that i do have symptoms of narcolepsy that are not symptoms of fibro..in particular auditory symptoms upon falling asleep..and sleep paralysis
Before I was diagnosed with narcolepsy I had symptoms that are common(I had all the symptoms)cataplexy,sleep hallucinations and parallasis(that how you spell it?)My brother has narcolepsy also and has no symptoms.I've had this for about 15 yrs or so and have never heard of a virus as a symptom.Hope this helps
I was about 30 or 35 and got mono and then the onset of fatigue and daytime sleepiness started. I had to quit my job because of it. I recall being ok until I was finally diagnosed with mono after about 6-8 weeks. Before I was diagnosed with mono I was being treated for sinus infections. I finally got diagnosed with narcolepsy at about age 35. I am 58 now and do better but still have the excessive sleepiness and vivid dreams. I think the mono had something to do with this but I'm not sure. What do you think?
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