Narcolepsy and Mono anyone?

[sleepymoon]

I'm 26 years old. I have just finished my bachelors degree. It took me over 10 years. Now I work full-time (seven hours a day). I'm taking Xyrem and it gives me such great sleep, that I wake up refreshed in the morning. I actually get to work at 7:15am most mornings, and I don't take naps at work.

In the past, my life was much harder. With Xyrem, it is much easier. It is not exactly easy, but it is not nearly as difficult as it used to be. I don't believe I'll ever be disabled by narcolepsy as long as I have Xyrem.

[TBPONY414]

Hi there,

Several years ago I had one of the worst cases of mono ever seen by doctors in the Washington, DC metro area. My levels were so off the chart that I slept 20-23hrs every day for two months straight. They wanted to put me in the hospital but couldn't get me out of bed to do so. I never really recovered and was diagnosed with a "rare second episode" of mono a year later. I finally was diagnosed with Narcolepsy and Delayed Sleep Phase Disorder just the other year. Like some of you, I have also felt that mono and narcolepsy were linked in some form.

In response to a recent post, I am going to the local community college and am taking just two classes at a time. School is unfortunately very stressful for me and it makes my narcolepsy/sleep even worse, but I am not on disability nor do I have any special grants due to my disorders. At school I spoke with the disabilities counselor and gave documentation of my disorders, and then told my teachers I have problems and to excuse any absences or me leaving class early. I am thankful I have Xyrem to make me sleep at night but unlike user sleepymoon, I wake up feeling like I never went to sleep at all.

--Liz

[sleepymoon]

[lomv]

I am 30, not under 30, btu this post caught my attention.
I had mono/EBV when I was 15 and the first signs of N very close together, but the N definitely came first. Despite both, I did not allow myself to rest as much as I needed and should, since I was in college at the time. Since then, i have been diagnosed with N with C, MS, and sometimes I feel even more tired than usual still. I have been to the dr on these occasions and blood tests have shown elevated of EBV (immunoglobulins), indicating a reinfected state. The MS likely came more recently (with symptoms seeding in the teen years as well) and MS is often believed to be triggered by an infections agent, such as EBV. I have often wondered whetehr my N and inability to sleep "properly" (have deep, restorative, meaningful slow-wave sleep) has impaired my immune system and abilty to cope with infection and disease, in general. for me, I am now able to discriminate fatigue and tiredness due to N, MS lassitude, and EBV fairly well, sicne I have taken medications to control N and MS symptoms at various times. The EBV fatigue is farily similar to the feelings I get when I have a flare of MS symptoms, but to a lesser degree. It feels like it is very difficult to control voluntary muscle and do tasks. For N, I find that sleeping often alleviates symptoms (more true when taking xyrem, for me). for MS, IV steroids almost instantaneously alleviate the bone-crushing fatigue. For EBV, you have to rest, but I find that I am able to get through the day (not efficiently or easily), but it is doable. when I have "reactivated" states of EBV/mono, they have generally lasted only a few weeks, so I feel less panicked-I know it is pretty temporary. In college, when I had N, it felt hopeless. Iwasn't treated or diagnosed until well after college (and shortly after grad school).

[millerdsvn1]

Im 28 now but have been sleepy since I can remember. Just diagnosed with N within the last month. The Dr. just thought it was sleep apnea. I told my husband I was going for a test for sleep apnea (he's not really a very understanding guy) He said "ok but I asked ur mom about u always being tired and she said u have always been that way. I doubt it is sleep apnea, but whatever" So then I really started thinkin about it. I had mono in 3rd grade and it took forever to get over then again in middle school and it seemed I never got over it, then again I had it as a teenager 17 or so (I would sleep all day and my BF would come by the house and visit and then tuck me in bed during the day) Sleepiness being the only symptom. Then I was diagnosed at age 22 when I was in Nursing school. I had a 2 year old then and at this moment am still fighting the sleepiness. Before they handed me this diagnosis it all came to me, Either the mono had to cause it or I never had mono and always Narcolepsy. Crazy. I remember after the first time I had mono the doc would say well I guess u didnt really have mono last time cause u arent supposed to be able to have it twice and I'd laugh and think dang maybe I never got rid of it!!!

[LauraSakura]

I had mono in 9th grade (couldn't get out of bed, throat almost swolen shut, the whole thing) and got better. I started feeling really tired again senior year, but without the swollen throat like I had the first time. A few of my friends who I had shared drinks with got mono, so I was tested again and they said I tested positive for mono. However, I later learned that its not very common to be able to catch it a second time, and I probably just tested positive because of the earlier case. that tiredness never went away... in fact it got progressively worse! the REM problems begun more recently. Now that I know I have N/C In some ways, I feel the two were linked, but I never put much thought into it. Its quite possible my EDS started with the first mono incident, however around that time I was put on Concerta (a stimulant) because I began to have trouble concentrating, and its possible that covered up the earlier EDS.

[kyethra]

Yeah, I had mono or something like it after I had my gallbladder taken out. I spent a couple of months in bed. I found that it helped if I tried to eat, and if I ate at regular times, like more than once a day. Keeping up with things like vitamins and nutrition seemed to help my body even if I thought it seemed like a horrid idea at the moment. And I just rested. It was sooo not fun and just messed up work and school and all that, but well at least it went away... When the white lines and spots on my tongue disappeared, I was happy.

[millerdsvn1]

I did go 1 and a half yrs for vocational nursing as a single mom. That was prediagnosis, but as I've said before, I never remember a time in my life when I wasn't very sleepy, so I had to have N then. Within that 1 and a half yrs I was diagnosed with mono and then a month or two later they said it flared back up again!! We all know that was N not mono!!! I have notes from class that make no sense and are pretty much scribbles from dozing off. Amazingly noone said anything and I passed pretty easily with LOTS of studing. I used PELL grants because I was a single mom. Now I only work part time so that I can nap and I don't get so overwhelmed. Hope this helps. I don't have disability or anything. I dont think my N is severe enough yet for that.

[meldoh]

I had mono in 5th grade. Im 25 now and was diagnosed a couple months ago but I definitly started EDS in 7th grade. Ive been reading about the auto immune theories and this whole thread could be used to connect that theory to mono or other auto immune diseases. Its very interesting to read how were all quite similar!

[SleepySarah]

Before I was diagnosed with Narcolepsy I was misdiagnosed with having an extended case of Mono. This is because I had mono when I was 10 years old and mono shows up in your system for life after you have had it. When i was starting to get tired all the time and I went to have tests done all that came up at first was Mono. It wasn't until I had a cataplexy that I saw a neurologist and found out I really had narcolepsy.

[PaigeV]

I tottaly believe that mono can have something to do with developing narcolepsy!! Im the youngest of 4 kids and 2 of my older brothers have it and so do i and we all have had mono first then developed narcolepsy!!!

[narcoholic]

Very Very interesting that you all had brought up this subject. Like so many others that have posted i was DX mono when i was 10 years old. Very bad case of it apparently because i couldn't hardly get out of bed, nearly flunked 5th grade because i just didn't go. In and out of the hospital and no one could figure out what was wrong with me. In fact they tried to start me on anti depressants at 10 years old assuming i was depressed. Luckily my parents told them to go *expletive* themselves and finally they got the blood work back for mono.

Previous to this, no problems with being tired. After about 2 years went by and my teachers started chiming in to my parents that there could be repercussions on me becuase how often i fell asleep in class and didn't listen to the teacher when i was woken up only to fall asleep again i was taken back to the doctor. Doctor felt it was lingering side effects of mono *like someone else said it will always show in bloodwork* and decided to put me on concerta. was taken off the concerta about a year after that for BP issues and had to jump through hoops and loops trying to convince doctors it wasn't because i was depressed, nor just lazy, not my weight, nor sleep apnea *which i was diagnosed with at 13 then rediagnosed as not having it at all at 17 then re rediagnosed as having apnea but not obstructive like previous now have central* at 21 to finally getting diagnosed as narcolepsy.

I don't know if its more interesting that so many of you where diagnosed with mono which has a symptom of excessive tiredness and later found out you had narcolepsy because of the research leading us to believe that narcolepsy could be an autoimmune disorder triggered by such a virus, or that we all could have doctors pushing our symptoms onto a virus that is untreatable, that is supposed to go away naturally and would magically explain most of them symptoms we all went to the doctor for.