FATIGUE!!!

[dairywife5]

Hi,
The reason I had a sleep test to begin with is the extreme tiredness/fatigue I was having. Being on the needed cpap for 1 1/2 yrs. now I am still fatigued. The Dr. thinks I may have narcolepsy. Checking into it and for just reading the test its $2000.00. That's not even the test itself!!! So, I am waiting to see if we get our deductible met this yr. so I can have it. From what I read up on Narcolepsy it seems more severe than mine. But, it is difficult to travel and driving my turn on vacations is getting worse and worse. The stimulants they would give me seem like only a bandaid fix. Has anyone else had this experience?

[YogaKitty]

Maybe if you could enter your equipment into your profile. Then there are so many helpful people here with lots of experience who may be able to help you.

[Julie]

Give us some information on the specific model #'s and names of your machine and mask, plus your pressure settings, plus how many hours of sleep you get, whether you're aware of breathing thru your mouth when asleep, or having acid reflux, etc. etc. With nothing to go on, it's hard to help.

[JDS74]

Hi,
The reason I had a sleep test to begin with is the extreme tiredness/fatigue I was having. Being on the needed cpap for 1 1/2 yrs. now I am still fatigued. The Dr. thinks I may have narcolepsy. Checking into it and for just reading the test its $2000.00. That's not even the test itself!!! So, I am waiting to see if we get our deductible met this yr. so I can have it. From what I read up on Narcolepsy it seems more severe than mine. But, it is difficult to travel and driving my turn on vacations is getting worse and worse. The stimulants they would give me seem like only a bandaid fix. Has anyone else had this experience?

Here is a good article on the condition.

http://www.dendwrite.com/samples/Stillm ... _Paper.pdf

If you are already on CPAP, hopefully you will have had a sleep study and can get the resulting report, Take a look at Table 2 in the paper and see if your sleep study reports any or all of the symptoms related to narcolepsy there. The test for narcolepsy is essentially a sleep study and/or a sleep latency test. You can do a home sleep latency test to get a feel for the possible results but a real one will be required for a diagnosis.

The home test is to lie down and try to go to sleep with someone watching and timing you to see how long it takes. Then, when they are sure, they wake you up and you get to start over again. Do that about 10 times, recording the times each time and see what the average time is. My sleep latency time in my sleep study was 2.5 minutes and now, with CPAP treatment, it still averages less than 10 minutes. No one has suggested that I suffer from narcolepsy although I have discussed it with my sleep docs and they don't think so.

Other possible causes for you symptoms are various forms of anemia many of which can be treated relatively inexpensively by vitamin supplements or other medications.

Do you still find yourself waking several times during the night? This can cause excessive daytime sleepiness that can be thought to be narcolepsy. Even with CPAP, I wake several times each night and have sleepiness and tiredness most days. So far, the docs haven't been able to find the cause but I'm hopeful.

Low blood sugar will also give you those same kinds of symptoms. Getting a low cost blood glucose test kit for about $25 or so will allow you to check yourself to see. If you have a friend who is diabetic, maybe they have a spare meter you could use for a day or so and check your blood glucose any time during the day you are especially tired. I think bad numbers are below 80 mg/dL or so but your friend or the user manual can give better guidance there.

When you are very tired during the day, does eating something with sugar or caffeine in it help? If sugar helps and caffeine doesn't, then that looks like low blood sugar. If, on the other hand, caffeine helps but sugar doesn't, then you are reacting to a stimulant and it's likely something else.

I hope you get better and also get a diagnosis that leads to treatment.

[kteague]

Narcolepsy certainly is something to be considered when all other possibilities have been ruled out. Having any other remaining contributors muddies the water. What things have already been ruled out? For me, limb movements, medication side effects, and some nutritional lackings all played a roll. The first step is to confirm that your CPAP therapy is indeed effective. After that, it's a process of elimination. You'll get a lot of good information here. If it were me, I'd walk through this process before even considering narcolepsy testing. That may come anyhow, but maybe not. Best wishes.