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possible UARS

Dear Doctor, I posted previously that I suspected I have UARS and my sleep study showed AHI of 5.2 with an arousal index of 32.3/hr (unexplained arousals).  I also have excessive daytime sleepiness.  The sleep doctor and my primary had both said my sleep study was "normal" despite the high arousal index and prolonged sleep latency [67 min) and prolonged REM latency (216 min).

Today I saw a different sleep doctor from the lab that did my study and she said all of my results point to "first night effect" and nothing abnormal.  She said if a person has UARS it will be picked up on the sleep study, they wouldn't have missed it.

I find all of this a bit strange.  I wouldn't have bothered with the study if I knew anything abnormal would just be chalked up to first night effect.  I still suffer from very bad EDS, and now the lab wants me to pay for the MSLT for narcolepsy, which I don't believe I have since I'm excessively sleepy but don't really fit the description of narcolepsy.  I can't afford to put out that much money again, so I'm looking for alternatives to get some answers.  Would a visit to an ENT possibly give me any insight as to whether my airway is being somehow blocked at all during sleep?  
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Avatar universal
I am also in the same boat as you two – I had a sleep study which revealed an AHI of 2 but 20 “spontaneous” arousals per hour.  The sleep doctor said I do not have sleep apnea but mild upper airway resistance syndrome and that my test results were not abnormal enough to require treatment.  However, I experienced all the symptoms of someone with UARS/sleep apnea at various stages in my life.  The sleep center where I took my study lent me a cpap machine to try out to see if it alleviated my symptoms.  It did, thankfully.  I finally convinced my primary care physician to write a prescription for cpap.  You need a prescription for a cpap machine since it is a medical device - it is illegal to sell it without one.  As someone with undiagnosed UARS, I will tell you that the dental device (TAP, Somnodent) is much better first-line treatment.  It took me 3 months to adjust the dental devices to reach the optimum lower jaw advancement setting.  I have tried both the cpap and TAP and Somnodent dental devices.  It took me approx. one year to desensitize myself to the mask let alone to find the right cpap mask (nasal pillows) and pressure setting to alleviate my symptoms.  Keep in mind with UARS you need only a lower pressure setting to keep your airway open.  If you read Dr. Guilleminualt’s papers on UARS and posts of www.cpaptalk.com and www.apneasupport.org most people with UARS need lower pressure settings of 8 and under.  I read in one of Dr. Guilleminualt’s papers that UARS people benefited from a median pressure setting of 7.  I don’t think you need a BiPAP because these are used for people who have high pressure settings.  A lot of cpap machines like Resmed and Respironics ones have expiratory relief as well.  
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Avatar universal
I have the EXACT same problem as kcr01. In fact, it's so similar that I need not give you details of my sleep disorder. as it would be redundant. My sleep doctor refuses to recognize the possibility that I have UARS and is saying I have narcolepsy and/or epilepsy and won't do a second study on me using a CPAP.

Out of desperation, I'm almost to the point of just buying a CPAP machine on craigslist. But, your reply concerns me a little. Do CPAP machines *really* only help *some* patients suffering from UARS?? Is it only because most can't tolerate it? What if I get a BiPAP?

I guess I'd like to get a an idea of a percentage of the UARS population that *can* benefit from the machine and whether a BiPAP significantly increses the chances that it will work (because it's much easier to exhale). If a CPAP doesn't work, is surgery the only option? Is a dental appliance more effective than CPAP/BiPAP?

I appreciate your help!!
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Avatar universal
MEDICAL PROFESSIONAL
You're getting the standard answer that most sleep doctors give. It's not wrong, but not quite right either. If you truly have upper airway resistance syndrome (I'm assuming you've read my article it), then treating it using standard sleep apnea options should help, but with a few caveats: Although CPAP does help some patients with UARS, most can't tolerate it. Dental appliances that pull the lower jaw forward is another good option, but you have to find a dentist that is good at it. Coincidentally, I just interviewed a dentist on this subject. You can download and listen to it here: http://tinyurl.com/df8bdl

You can see an ENT, but it will be hit or miss in terms of how well he or she will understand UARS. If you have any nasal symptoms, they can help you with that. Surgery is always a last resort, but I only bring up this option to show you that UARS is an anatomic issue that leads to medical and physiologic problems.
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