Tags: idiopathic hypersomnia
I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.
This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....
What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)
I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.
From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.
So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....
At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year , but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... )
Somebody pointed out that having Sleep Apnea disqualifies you from joining/staying in the National Bone Marrow Registry.
Even though they say 80% of marrow donations are done using an apheresis (think plasma or platelet donations)....
The explanation is:
Patient and donor safety is our top priority. Donor guidelines are developed by our Donor and Patient Safety Monitoring Committee. The committee is made up of medical directors from NMDP donor, transplant, apheresis and collection centers, a donor and a patient.
The primary risk associated with sleep apnea is related to marrow collection, which is a surgical procedure. Registry members must be able to donate either marrow or peripheral blood stem cells, depending on the needs of the patient.
Regulating anesthesia is more difficult in patients with breathing. After surgery, marrow donors may require narcotic pain medication, which can further depress breathing. In patients with sleep apnea, even a small amount of anesthetic sedation can cause decreased airflow.
Despite the risk, some registry members express their willingness to assume the risk in order to help a patient. While the NMDP appreciates the courage and compassion that motivates them, it would be unethical for the NMDP to allow donors to do so.
To learn about other way to help patients and their families, visit http://www.marrow.org/HELP/index.html?src=tabinvolved
Of course, the explanation then raises the question of other disorders, such as narcolepsy and/or idiopathic hypersomnia....who also can respond differently to anesthetic or pain meds.
Regarding your questions about narcolepsy or idiopathic hypersomnia disqualifying a donor, it would best be considered on a case-by-case basis to determine the extent to which it affected breathing, and what impact it might have on the ability to donate.
So, there you have it...if you have sleep apnea, they tell you to go away... But, if you have some other condition of similar or greater risk...they'll let you in....because not waking up from anesthetic is okay if you keep breathing? Though one also wonders if they fully understand what sleep apnea can be?
An MSLT, Multiple Sleep Latency Test, is a nap study. It is used to see how quickly you fall asleep in quiet situations during the day.
The study is based on the idea that you should fall asleep in a shorter amount of time as your feeling of sleepiness increases. The MSLT charts your brain waves, heartbeat, records your eye and chin movements. The study also measures how quickly and how often you enter the rapid-eye-movement (REM) stage of sleep. Results of the nap study are routinely used to detect sleep disorders.
The study isolates you from outside factors that can affect your ability to fall asleep. These factors include such things as the following:
- Temperature (too hot or too cold)
Other factors that can still affect the results of the study include the following:
- Drugs and medications
- Amount of sleep prior to the study
The use of stimulants needs to be stopped for two weeks before the MSLT. Your sleep specialist should help you properly schedule the use of any other medications.
An MSLT is used to evaluate people who are thought to have narcolepsy. Most people with narcolepsy fall asleep in average of less than fire minutes during the test. Some take longer than five minutes to fall asleep. There are also people without narcolepsy who fall asleep in less than five minutes. The test also counts sleep-onset REM periods (SOREMPS). This is having REM sleep very soon after you fall asleep. REM sleep is normally the fifth and last stage of each sleep cycle. Having two or more SOREMPS in an MSLT is usually the indicator of narcolepsy.
An MSLT may be used to see if a person has idiopathic hypersomnia. These patients will fall asleep easily but do not have SOREMPS.
An MSLT will reveal a broad range of time in which it takes normal sleepers to fall asleep. Normal sleepers usually fall asleep in an average of about ten minutes during the five naps of the MSLT. Due to the wide range of normal times, the results alone are not enough to diagnose a sleep disorder. Doctors must also consider other data, tests, and medical information.