Narcolepsy

[Catrionna]

I've had horrible fatigue for over two years now.  I've had the million dollar workup- so far it's not shown anything conclusive.  A few months ago, my Doctor started me on provigil, because I finally told him I was afraid my constant need for sleep would cause an accident at work.  At that point, I had stopped driving.  I HATE not driving!!!
I finally had a sleep study D/T RLS, which I've had my whole life with no real problems.  My results were not what I expected::
Under recommendations it states that 1. I don't have sleep apnea (I knew that), and the 2. Although the pt has RLS and PLMS, the arousal associated with these do not likely explain EDS- given a short overall sleep and REM latency, consider narcolepsy clinically. I had 156 arousals, 110 spontaneous, the rest due to limb movement.   I also spent  most of my sleep time in sleep stages 1 and 2,  whith REM episodes scattered randomly.  I had no time in stage 3, and when I had REM sleep it was from wake to REM with no progression through the other cycles.    I had two episodes of central sleep apnea, and my sats dropped to 83%, but otherwide my HR was 35-75, with avaerage O2 sats of 97% and above.  While I'm awake, my HR stays in the 90's, but can go as high as 140 with exertion, but echo and 72hr holter were normal.
Ironically- the neurologist's nurse called this afternoon to tell me I don't need RLS medicine, to increase my provigil, and that the neuro will talk about my sleep study at my follow-up appointment, which is a month from now.  This sleep study was done with my taking provigil daily.... I learned the hard way that waiting to take it until I was so sleepy I couldn't function doesn't work.
I am the primary bread winner in my household.  I have a teenager and a special needs child.  I have a job I love.  I am NOT crazy.  I have a month until I see my neuro- but does this sound like narcolepsy??  My need for sleep has taken over my life, and it *****.  I am determined to overcome this!

[Gregg D Jacobs, Ph.D.]

Narcolepsy can only be diagnosed with a multiple sleep latency test that is done during the day.

Dr. Jacobs

[Catrionna]

Thanks for the reply!  I wondered if a MSLT would be the next step.  When one has a MSLT- how long should one be off medications to obtain an accurate result?  If the medicine is helping, is it worth it to to get a MSLT to have a proper diagnosis?  I read that to have a MSLT, it's recommended to stop meds for up to two weeks, which whould shut me down for two weeks.  In all honesty, I really don't care about a diagnosis anymore, I just want to be able to function normally again.
I'm doing my best to practice good sleep hygeine.  I don't have a TV in my room, I bought a comfortable bed, I'm trying to make sure I have 8hrs of sleep and I try not to sleep in.  I've cut way back on coffee, I drink mostly water and gatoraid.  No antihistamines because they make my legs jump.  I try to have a good long walk at least three times a week- daily if I can manage it.  I work in my garden, and I eat lots of fruits and veggies.  I practice yoga.  Is there anything else I could do?  When I get so sleepy that I can barely function....I try to work through it, though it's hard.  Would it be better to take naps or try to carry on?
I would like to be able to try to manage this at home- so when I see the neuro in a month, I can have an idea of what helps.  The neuro is almost two hours away- and I'm afraid to have too many visits because I just don't feel safe to drive that far.
Is there anything I can do when I'm at work and the sleepiness hits me?  I can't nap at work- it's too busy.  I've tried to take brisk walks around the building but it doesn't help much either.  I don't want to take anything else besides provigil.  Would some type of protein drink be worth a try?  There has to be something more I can do,  something healthy that doesn't involve more medication or dubious herbal remedies, that can get me through the fatigue.

[Gregg D Jacobs, Ph.D.]

Your sleep doctor can answer these questions.

Dr. Jacobs