I have started using a cpap machine again after a 10+ years time frame. I’m surprised at how much quieter my machine is compared to the one I used in 2006. The drawback is that I’m still not seeing any change for the better. I also have RLS and possible narcolepsy. The doctor bumped up the compression with no noticeable improvement either. Since the cpap isn’t helping the ENT wanted to do a sleep study. However, the insurance company is denying the sleep study. If my benefit says I can have a in doctor sleep lab study then why are they denying the sleep study. I am still finding it difficult to drive to/from work because I fall asleep while driving. Im having too many near misses. I have found that munching on food while driving keeps me alert. But for obvious reasons I don’t want to continue to use that as my means to stay alert. Any suggestions? I’m close to chucking the cpap machine if the insurance company is denying the sleep study.
You are supposed to be using the cpap all along if you were diagnosed with sleep apnea. I think it’s the fact that it’s been 10 years and your type of insurance that they are not doing anything.
I just left a similar message on “Want/Need To Stop CPAP Therapy” (you might want to read it) that mentions how I had to struggle to get testing & sleep studies done for Narcolepsy & a few other conditions. But I’m not sure why your ENT is involved. It’s usually the other way around - the Sleep Doctor refers to the ENT to clear up anything structural that might be causing sleep apnea. But I’m not sure they’re the ones to go to for narcolepsy. If your ENT thinks you might have narcolepsy, he should have referred you to a Neurologist first.
I want to save you from a lot of grief & help you save time & money by telling you how I finally got my narcolepsy diagnosed. It took me many, many years of dealing with ineffectual doctors (referred to the wrong fields of Medicine I might add), improper diagnoses, ineffective treatments & medications, & still my sleep problems persisted & were never treated properly until I consulted a Neurologist, originally to treat my migraine headaches. It was during my second appointment with her that she asked me if I frequently woke up with these chronic headaches (4-5 days/week) & when I answered “Yes,” she immediately referred to a Sleep Specialist for a sleep study. Not only did he find out that I was indeed experiencing a high number of sleep apnea’s while sleeping, he also noticed that I had some strange brainwaves going on while I was sleeping. This got my Neurologist to think that something like that could be triggering my Narcolepsy attacks, too. She asked my Sleep Doctor to do an “Awake Study” to see if these unusual brain waves were going on while I was awake, too, & to pay particular attention to what was going on with the brain waves when I experienced a narcoleptic attack. The Sleep Doctor was able to pin point that I was in fact having attacks of narcolepsy that showed that I was falling into a certain abnormal brainwave pattern right before I had a narcoleptic attack & picked up a couple of facial cues that also happened at the same time by watching the video feed that was recorded in the sleep room during the study. Unfortunately, these facial cues are of no use to me since I can’t watch out for them myself, but I have clued in family & friends to watch out for them. My Neurologist performed some other tests, too, including blood tests, a MRI of my brain (checking for an injury, tumor, brain abnormality or brain deterioration - because I was 58 at the time) & a Nerve Conduction Test. From the sleep studies & other tests she was able to confirm that I was suffering from Narcolepsy (there are some similarities here with epilepsy she told me). She was also able to diagnose a separate disorder - Sleep Rythm Disorder (sometimes called Sleep Cycle Disorder - There is a separate topic section for this disorder on this site) about a year later.
I was 59 by the time both of these disorders were diagnosed & we have tried several medications for each. As of today I am functioning well with these treatments, but I am still very afraid to drive anywhere more than 45 minutes away & only drive if I’m being kept awake by having to watch out for heavy traffic (I live in San Antonio so I pretty much encounter heavy traffic all the time). But if I want to see one of my friends who live an hour to an hour & a half away, I can’t do it. The very last time I tried to do it, I was driving to Luling & was almost to Seguin (~20 minutes from Luling) & started drifting in the lane over 2 other lanes & would have hit a concrete abutment if a car behind me hadn’t started leaning on their horn. I woke up just in time to correct my driving & pull over onto the side of the road. I took a half hour nap & proceeded on to Luling. My friend would not let me drive back home & I spent the night at her home. The next day she had her son come over & drive my car back to San Antonio while I rode home with her. My friends in every which direction from where I live won’t let me drive to visit them any longer & I sure do miss my freedom of being able to make day trips or driving to Houston or to the Texas Coast - they’re just too far away. My friends now drive to San Antonio to see me & I sometimes feel like it’s a real inconvenience to them, but they don’t seem to mind & really there’s not much to do in their small towns & they enjoy driving here to see me & participate in SA’s local activities.
I guess what I’m really trying to say is that it is a very serious condition that needs to be checked out by a Neurologist & Sleep Specialist Doctor, not your ENT, who has evidently ruled out any structural problems that may be causing your narcolepsy. Perhaps, this is the reason you’re not getting the referral to the Sleep Specialist for a sleep study approved by your insurance company & it’s because they aren’t seeing the correct information that would convince them that there’s sufficient reason for a sleep study to be performed. Neurologists deal with this kind of problem, probably not too frequently, but often enough. He/She will do a comprehensive history (with the proper questions that will get you a referral) & work-up & will run a few tests before referring you for a sleep study. By then, he/she will be able to appropriately document what is going on with you & will be able to concretely say why they think you might have narcolepsy & will be able to justify the request for a sleep study.
I hope you don’t think I’m criticizing you or your ENT; I’m not - I had to have surgery performed by my ENT for some blockages before I started CPAP therapy myself & I count my ENT among one of my favorite doctors. I just don’t want you to waste your time with the route your going because I have been there myself & also had problems getting referred to the proper doctors all along & was coming up against brick walls with doctors & insurance companies alike. I just think that going the Neurology route might be the best way since it worked for me FINALLY! I hope to save you from the grief & frustration I went through for nearly 30 years before finding the right doctors to treat me & advocate for me. I think it’s important for you to advocate for yourself, too, & I just want to point you in another direction that I think will probably do the trick for you & save you a lot of grief, time & money. Besides, it’s more likely that the medications you will need to treat narcolepsy are usually prescribed & monitored by neurologists & the follow-up for this condition is generally done by neurologists with input from your Sleep Doctor, & that street works both ways; my 2 doctors copy each other on everything at both my & their requests.
I wish you the very best of luck in getting this difficult syndrome(disease?) successfully diagnosed & treated. And please be patient afterward your diagnosis is finally pronounced. Treatments are a little bit of trial & error. I went through several different dosing strategies & medication changes before finding the exact regimen that seems to be working pretty well for me so far (3 years later🤞). Please keep us updated so we can share your victory when you finally get that referral & again when you finally get a definitive diagnosis.