I am curious about this because my daughter and I got mono and really never recovered.
Did you have a virus before getting narcolepsy?
Question posted by zadet on 28 July 2011
Last updated on 13 January 2019 by debexplorer93
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7 Answers
debexplorer93
14 Jan 2019
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?
wakmeup
26 Jan 2012
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
zadet
17 Feb 2012
What do you take for medications to help you thru the day? Do you sleep at night?
lleelops
15 Jan 2012
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
..
johnson301
14 Jan 2012
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 I admitted feeling withdrawn and frustrated when I had prolonged mono, but I haven't felt like that since.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.
zadet
16 Jan 2012
Sorry for not getting back sooner... but of all things I too got mono and have not recovered in a year. I know what you mean about everyone thing or expecting you to be depressed... it makes me angry sometime the ignorance of people. I have studied all this for the past 8 yrs. Also got my daughter into NIH. I would love to talk to you and maybe help since we have done all the dr.s as I am sure you did! I am not sure how to go about doing that. I feel your frustration. Are you taking adderall or anything? I would love to help if I can.
zadet
17 Jan 2012
Have you tried taking anything to help you sleep and or stay awake?
johnson301
18 Jan 2012
Thanks for your response. I'm taking 30 mg of adderall and 40 mg of prozac each day. I used to take 250 of nuvigil, but i've been trying to decrease the amount of drugs and have been off that for about 2 weeks. Adderall doesn't seem to do much for me, but the prozac seems to help my energy levels and keep cataplexy from ever happening. I'm not sure if I ever had cataplexy, but I've had mild strange feelings in my legs while walking before taking the prozac. I'm nervous about xyrem. The side effects seem scary, but because my sleep is not refreshing and I wake up briefly during the night, it may be helpful. What are your thoughts?
As far as the depression piece goes, I admitted to the doctor that I sometimes feel like crying when I can't go on a weekend trip with my friends because I'm afraid I'll be too exhausted to have fun. I also told the doctor that I do not have racing thoughts or worries before falling asleep. The worrying comes when I realized I've slept so much, I've gotten almost nothing accomplished. I feel that any sadness I have is a direct result of my tiredness holding me back from the things I love to do. I currently work full time, and I achieved a college degree. I remember taking notes in class and my eyes seeing double while I was writing. I also remember taking a lot of naps because my eyes would burn. The double vision has subsided, but my eyes still burn constantly with tiredness. This ALL happened after I tested positive for mono in high school.
wakmeup
26 Jan 2012
Hi johnson!When I was diagnosed 15yrs ago I was living in washington state and even though the dr that diagnosed me(also the head of the sleep clinic there) he prescribed dexadrine and immipramine for the cataplexy and called it good.All he would do was write me a script every month without any follow ups!Of course that was'nt the answer so I had to move to california after 2yrs of that and found a sleep clinic to basicaly start again.I went through a couple more years of trail and error with this dr.When he could'nt help get it under control he dropped me as a patient with no explanation and no referral! I ended up having to go all the way to Stanford to find a neurolagist(The other so called doctor was the only game in my town).Now I'm taking 20mgs of desoxyn twice a day and am maxed out on xyrem dosewise with 150mgs of effexor during the day...
that's a long way from dexadrine and immipramine.Alot of doctors are still in the dark about the whole thing you're gonna find.When you find a doctor (neurolagist)and he looks at you like the RCA dog, that should be a red flag!Even Doctors in the know can be narrow minded when it comes to treatment.Try and do some research online before you go.Anyway I hope this helps you out a little at least take care
johnson301
26 Jan 2012
Thanks so much for your reply! I recently contacted a neurologist at Emory, so hopefully I hear back soon.
Sammy2222
28 Sep 2011
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.
zadet
28 Jan 2012
Your story is the same as my daughters. Mono is ebstain barr... my daughter also had parvo virus. Her Igg and IGM where 2800 and 1900. Yours?But it wasn't until mono that she just never recovered. She would get sick if anyone else was- in the hospital several times. I hated watching her suffer and mis so much of life. You must have suffered too! I am so sorry . Funny I actually thought I was immune from mono until I got ir this past yr at the age of 50. It has been 15 months and I am still suffering with terrible fatigue. I also had everything else from lyme to pneumonia .They finally put me on adderall because I had no ability to get up. I feel so behind in everything. I think the hardest part about being sick for so long is the isolation you feel. My prayers go out to all that suffer with extreme fatigue... it is the worse.
booanjel
5 Sep 2011
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?
Srenee00
28 Sep 2011
I have been diagnosed with narcolepsy since I was 12 years old. I am now 29 years old. For 3 years before my diagnoses I was miss diagnosed, and I too for 9 months was told I had mono. I was also told Cronic fatigue syndrome, and depression and few other things, even was told I was crazy. Narcolepsy does often get misdiagnosed. I feel as the years go on, it gets better, but I wish I could find a medication that would wake me up completely. I've taken Ritalin when I was in high school and got addicted. I took adderall and provigil together and after about 2 years became allergic to provigil. Now I take adderall xr by itself and just wish it was stronger. As long as I'm busy I'm fine, but when I slow down I get tired. I want something that won't make me tired. I no longer have cataplexy or hallucinations, I'm also scared will they come back if I try something different. Just thought maybe she had the same problem as me, that maybe there was a misdiagnosed.
zadet
16 Jan 2012
For some reason I was not getting these answers. I feel so bad that it has been so long but honestly they just emailed me. Did you have mono as a child or EBS? My daughter is 20 and trying so hard to make it thru college. It breaks my heart but I am still hopeful that they will find out why. They used to think that narcolepsy was genetic but now have since changed there mind. I have fought hard for help for my daughter and recorded everything I could. Did you get sick often? She takes 30 m adderall 3 times a day and luniest at night.. She is awake but not in her mind if you know what I mean. Check out Stanford University for research. What do you take?
zadet
16 Jan 2012
For some reason I was not getting these answers. I feel so bad that it has been so long but honestly they just emailed me. Did you have mono as a child or EBS? My daughter is 20 and trying so hard to make it thru college. It breaks my heart but I am still hopeful that they will find out why. They used to think that narcolepsy was genetic but now have since changed there mind. I have fought hard for help for my daughter and recorded everything I could. Did you get sick often? She takes 30 m adderall 3 times a day and luniest at night.. She is awake but not in her mind if you know what I mean. Check out Stanford University for research. What do you take?
zadet
28 Jan 2012
She takes lunesta and adderall 30 mg 3x's a day. Its oK. Not great but so far she is surviving . They used to think that people where born with it but they no longer do. Check out Stanford Medical, I think they will find a cure. I check there website monthly...
Pacita
27 July 2013
I got viral meningitis Aug. 2004 while. 6 months pregnant. Baby totally healthy and 8 year old over achiever in a private school, however, me not so lucky. So many health issues mostly chronic pain from the botched spinal taps. I've had chronically declining health since. Now I just expect it. I feel better getting a bad dx and going from there for treatment or acceptance, rather than another empty doctor appt. Minus my multiple co-pays. Mostly I dx myself before the doctors do IF they even do. I now have severe Narcolepsy. All of the symptoms except Cataplexy. Symptoms came on then severely increased about 6-8 months ago. All I could do is sleep or fantasize about when I could. Then I couldn't drive because the onset was soooooooooo fast! I also have sleep apnea and insomnia unless I take a cocktail of 3 meeds at night to sleep at all. If 1 is missing from the equation, I don't sleep.
My older daughter was 9 months at the time of the meningitis and I truly think that she got affected. She was sick a week prior to me. I kept her in a cool bath under a fan. It was so hot in L.A. Calif. W/O air. I was just getting sick and couldn't think straight to take to the dr or hospital on a weekend. She was slow to walk and speak. At 2yrs, was dx w/ autism hi functioning. I got her help and therapy, however, she has many days when she's just "not with it". She doesn't answer to me and just dazed. Strange thing, she is now 9 years old, also goes to a private school and got all A's, but not like her sister. She has tutors but excels in technology. I think the virus is the link. Some/Most times you need to advocate yourself and not be so dependent on doctors. Luckily, I found some that are open minded and welcome my opinion. I know myself better than anyone, but I still can't figure everything out. I suggest you get blood test just to confirm, ebv cmv & thyroid T3&4. This won't do much but confirm your fatigue and help you for treatment and back you up for disability. Either first application, repeat or re-certify. Good luck.
harahd
1 Aug 2011
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.
zadet
1 Aug 2011
How is she doing now? My daughter had mono about 6 years ago and really never recovered with energy or brain power. Is your daughter in school?
harahd
2 Aug 2011
She was 9 when she got narcolepsy along with cataplexy. She has done very well in school. We did have to change her school as we realized that she does better in a structured way, and the school she was in was not offering education in that manner. She takes xyrem and clomipramine at night and concerta in the morning. Her cataplexy has also reduced, but still there. Once we reach a desired effective dose of xyrem, her Dr. wants to possbily wean her off concerta and clomipramine.
susan_2009
17 Jan 2012
I'm sorry to hear that. My daughter who is 24 now,also had mono at about 10 & so far, she has no sign of narcolepsy,thank the Lord.
Srenee00
17 Jan 2012
I've had narcolepsy for 18 years, I have not let it stop me from things and I look at it with a positive attitude. Adderall works great for me. Cataplexy even goes awAy
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narcolepsy, infectious mononucleosis
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