Health Update #4
Last revision: Feb. 8, 2003
Well, after a year or two of rapidly declining health, I'm finally getting some treatment for an apparently severe case of sleep apnea. I got a CPAP of my very own (See above photo). No more stopping or barely breathing 96 times an hour while sleeping. Well, maybe. After the first month on CPAP I didn't get any better. I got together with my Pulmonologist (finally) and he's concerned that I'm not doing any better than I was after the two weeks on the APAP machine back in October. He said I may have a second sleep disorder (not likely) or may be one of the few that don't respond to CPAP. He schedualed me for another sleep test as a result. Despite not making any progress, I want to give CPAP treatment some more time to work (I don't like the alternatives and have read it can take 4-6 months for some to feel normal again). I have two months to show improvement or I'll have my schedualed Multiple Sleep Latency Test (MSLT) for hypersomnolence in late February, 2003 back at the sleep center. The CPAP treatment, though well tolerated may not be working which would be somewhat unusual. Not to mention disapointing. This may take a while to sort out (six months? one or two years?) : P
Once again, for those interested, more details will be posted below as I get the time and energy.
Life with CPAP
"All patients should be warned that the first few nights of CPAP therapy are unnerving and may produce anxiety. "
-- Sleep Apnea, UCDavis
I finally got my CPAP machine in November, 2002 for a serious case of sleep apnea. During my 2 week test with the APAP machine at home in October, the air pressure went up to 9 (= 9 cm of water pressure) at times to end my apneas. My Pulmonologist gave me a prescription for a CPAP set at a constant pressure of 7 which is low considering the severity of my apnea. I responded well to the APAP at low pressures and tolerated it without any real problems as noted in my previous update. I didn't have any trouble tolerating the air pressure up my nose or feel claustrophobic as many do. One person we know said he used to take the CPAP off at night and throw that sucker accross the room in frustration. He decided to have surgery to remove his uvula, some soft pallat material, back or the tongue, etc. to literally give himself more breathing room. Despite how uncomfortable it may sound or look (see above picture) and the trouble many have adapting to CPAP at first, I don't notice it at all most of the time. Maybe I'm still too tired to notice or care. An air pressure of 7 is pretty low though and most have problems at a level of 10 or more. I also noted before my symptoms improved during the two weeks on the APAP and I thought I needed about another month on a CPAP before getting back to normal. It seemed like a pretty standard case of getting a CPAP and getting on with my life, so I was happy to receive a permanant CPAP in November.
I should be so lucky. After a month on CPAP, I didn't make any headway let alone return to "normal."
My One Month Check-ups
After picking up my CPAP in November I had to set up a one month follow up appointment with my pulmonologist and also the sleep center to see how the first month went. As noted I didn't see any improvement the first month. I saw my pulmonologist in December and he expressed concern about the lack of progress. I told him I seemed to have plateaued at where I was after using the APAP. I wake up without my previous symptoms (headaches, fuzzy-headedness, fatigue, etc.) and can make it through a day at work without much problem but "crash" in the late afternoon or early evening and my symptoms would returtn full force. I would be too tired to think, concentrate or do much of anything.
He said I could have a second sleep disorder though he said that was unlikely and with an RDI of 96 and 26 apneas/hr. that could certainly cause my daytime "sleepiness" even after using a CPAP a while. He also suggested I could be one of the few that simply don't respond to CPAP treatment (it's nearly 100% effective in those that tolerate it. Thus he expressed concern that despite tolerating it perfectly well and sleeping with it for 7 or 8 hours a night, I wasn't seeing any improvement). He thought this unusual as I responded like a fish to water to the APAP machine - it didn't take much increases in air pressure to get me breathing again. So he said he'd like me to take a Multiple Sleep Latency Test (MSLT) to get a reading on how "sleepy" I still am during the day. He said he could give me some short-acting stimulants in the mean time to help me make it through the evening, but I declined. I imagine there are lots of people out there who would like to have a prescription for a stimulant. However, I want to know exactly what my symptoms are not mask them over. If I start to improve while I'm taking the drugs, how would I know?
I told him I'd like to give the CPAP some more time since I tolerate it well and I've read it can take 4-6 months for a person to feel like they're back to normal after starting CPAP treatment, though most repond quickly. Thinking of the long, drawn-out process of getting my first sleep test done, I asked him if it took a while to get into the sleep center for a daytime MSLT. He just nodded 'yes' in an apologetic kind of way. I said, "Well, why don't we set up an appointment for a couple months from now. If I get better I'll cancel the appointment, if not I'll go ahead with it."
So that's where I stand. Same as a couple months ago.
I had my one month appointment with the sleep center a couple days later. The person there I talked to wasn't concerned at all that I hadn't shown any progress yet. She said it can take some time. Like most of the workers I've met there, she has sleep apnea too, so this makes me feel better about not feeling better!
Multiple sleep latency test
A sleep study, conducted during the day, that helps to determine if a person is abnormally sleepy during the day and how severe the daytime sleepiness is.
In an MSLT, they hook you up again to monitor how long it takes you to fall asleep for a 20 minute nap and what sleep stage you go into during that time. You try to take a nap every 2 hours throughout the day to gage how sleepy and sleep deprived you are. It is usually used to test for narcolepsy, though it is also used to test for daytime sleepiness (hypersomnolance) and to determine its severity after CPAP treatment (if a patient complains of any "residual" daytime sleepiness). If you fall asleep in less than 5 minutes on average plus go into REM during 2 or more of the naps, you definately have narcolepsy.
My pulomonologist wants the MSLT done to document the extent of my "residual" sleepiness and perhaps rule out narcolepsy. It can also determine if the fatigue and fuzzy-headedness symtoms are sleep deprevation related or if it has another cause. The American Sleep Disorders Association's Report on "The Clinical Use of Miultiple Sleep Latency Test" says:
However, following effective treatment for obstructive sleep apnea by tracheostomy or CPAP some patients continue to have excesive sleepiness. Posttreatment MSLT mean sleep latencies can be less than 10 minutes. The cause of the continued sleepiness is not known but may indicate the presence of concurent narcolepsy, ideopathic hypersomnia or other disorders of excessive sleepiness. Therefore, the MSLT may be indicated in some patients to determine whether treatment of the sleep apnea syndrome has been effective in eliminating excessive sleepiness...
Persistence of sleepiness after treatment of obstructive sleep apnea may be due to ineffective treatment, poor compliance to CPAP or other coincident sleep disorders. To determine the concurrent presence of narcolepsy, after treatment of obsrtuctive sleep apnea syndrome by CPAP, the MSLT should be performed with the patient using the CPAP device.
So it's back to the sleep center to see if I can sleep every two hours with all that stuff attached...
After Two Months on CPAP
When I talked to my pulmonologist in December, I told him as noted above that I hadn't make any progress and still usually "crashed" by late afternoon and early evening. He asked me twice "How bad is it?" to try and gage the severity of my sleepiness, fatigue and cognitive problems. How do you explain your level of "sleepiness?" How about "fuzzy headedness" or "inability to concentrate?" Especially when you're fuzzy headed and can't concentrate!
After I saw my pulmonologist, I ran across the Standford sleepiness scale on the web. It gives apnea patients a way to try and quantify (subjevtively) somewhat their daytime "sleepiness" and cognitive states and monitor them over days and weeks. It tries to put a number on it. (See chart below)
Degree of Sleepiness
Feeling active, vital, alert, or wide awake
Functioning at high levels, but not at peak; able to concentrate
Awake, but relaxed; responsive but not fully alert
Somewhat foggy, let down
Foggy; losing interest in remaining awake; slowed down
Sleepy, woozy, fighting sleep; prefer to lie down
No longer fighting sleep, sleep onset soon; having dream-like thoughts
I have been monitoring my daytime symptoms with this chart since. It has helped me document some progress over the last month. I always wake up at a 2 and go downhill from there. When I said I usually "crashed" by late afternoon in December, I would go to a 5 or 6 and stay that way until bedtime usually. Since then I usually go to a 3 or 4 by the late morning and stay there. Sometimes I still go to a 5 at various times (usually evening). So I've made progress, but not enough to cancel my MSLT. As the site the above chart was taken from says, "If you go below a three when you should be feeling alert, this is an indication that you have a serious sleep debt and you need more sleep." I am at a 4 most of the day now. After noon I have never in recent memory or during my documenting my symptoms been at a 1 or 2 and rarely at a 3. For that matter I have never been at a 1 since I can remember.
1. The yardstick most go by in determining the sverity of apnea in a patient is the one used by the ASDA:
The American Sleep Disorder Association rates the average number of OSA events per hour [apneas and hypopneas] as your Respiratory Distress Index (RDI). An RDI of 0 to 5 [is] normal; 5 to 20 is mild; 20 to 40 is moderate; over 40 is considered severe.
Obstructive Sleep Apnea Material in brackets mine.
With an RDI of 96, this would mean I have a pretty serious case of apnea, which doesn't surprise me given my symptoms. A recent article pitted the inventor of CPAP, Colin Sillivan (who thinks the AHI or RDI is worthless in assessing apnea severity) and David Rapoport another famous individual in apnea circles who maintains the AHI is valuable. The article stated about Rapoport:
He defines severe cases as those with an AHI of 30 to 50 events per hour or greater. "This is definitely bad Š and I want to treat it," he stressed.
"Definately bad"? How bad? Some of what I've read on this high an RDI (96) has made it seem pretty darn serious which didn't help me be patient with the slow pace of getting CPAP treatment. As one exhausted person explained after getting similar sleep study results (RDI over 100) and waiting for a CPAP prescription:
For a week now, I had replayed his words in my exhausted head every night. "Any RDI over 80 is life endangering. For you, sleeping without cpap is potentially fatal" This information had made my pillow feel as ominous as a revolver in a game of Russian roulette!! But at last, I sat here in a room filled with those beautiful machines. I had made it!
-- Mary's Apnea Story
"Any RDI over 80 is life endangering" and I have an RDI of 96? No wonder I sometimes feel like I'm half dead already at 42. It didn't help to hear stories from friends about people who couldn't tolerate CPAP use, stopped using it and then died in their sleep!
The Clinical Use of Multiple Sleep Latency Test American Sleep Disorders Report (PDF)
Previous health updates:
Update #3 My Home APAP Test and Sleep Study Results Nov. 15, 2002
Update #2 My sleep study Sept. 10, 2002
Update #1 My Health August 10, 2002