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.
Wonderful answer. It is amazing what so many people have dealt with. I arrived at my diagnosis of Severe Chronic Obstructive Sleep Hypopnea being grumpy about even having to do the study. Now that I have started researching what it can do to you, I am anxiously awaiting my titration appointment on 09/22. Thank you for all of the information you provided…
Best wishes, @Caeryl - Please do let us know the outcome!
Thanks - I’m not really wishing my life away, but I reallllllly wish this were closer… I think it may make a huge difference in how I feel all of the time… Have a great weekend, and I hope you are no where near Florence. I’m in the VA Beach area, so on pins and needles…
I found this interesting website tonight. Here is the link.
I hope you find this interesting & helpful in strengthening your request for testing by being able to point to concrete symptoms that are in the physician’s language.
So, I was wondering if you might have an update for us on how your quest is going? I really hope you’ve been able to make an appointment with a neurologist by now, and that the doctor has taken your history, reviewed your symptoms & is in the process of formulating a properly referenced Letter of Justification to your insurance company requesting authorization for further testing, to include an in-depth sleep study, among other tests, too, so that a confirmed diagnosis of your condition can finally be made & a treatment plan formulated so that you can finally receive treatment & begin your journey of managing this debilitating syndrome(/disease?). I continue to wish you the very best hopes in achieving your aim finally.
I also want you to know that your story hit a very personal chord with me & because of that I have been giving your situation a lot more thought than I usually do in these patient communities. I’ve been where you’re at before & know what a long & arduous journey it is of seeing multiple doctor specialties, each zeroing in on symptoms they can relate to some diagnosis that is recognized & treated by whatever specialty they are, while ignoring your other symptoms that don’t speak to their particular narrative, thus most often times rendering either an inaccurate diagnosis or an incomplete one.
So, thinking about your difficulties in getting your insurance company to approve further testing for you, I am now wondering if perhaps your insurance plan is an HMO, where you have to have referrals to every specialist from your Primary Physician? I know from my own past experience & others’ current experiences that it’s sometimes like pulling teeth to get a referral from a Primary to the correct kind of specialist, where they’re hoping a referral to a specialist in a less expensive field of diagnosis & treatments will work equally well or discourage you from seeking further treatment for a condition they either can’t diagnose & treat themselves or simply don’t want to have to shell out for further testing. I want you to know that yes, some HMO Primary Physicians are that unscrupulous, sad that that is. An HMO Primary Physician can also refuse to agree to specialized testing requested by a specialist they’ve referred you to, as your Primary has a say so in approving further testing & treatments even though they’re not the actual specialist physician requesting the tests or providing treatment. This is because all payments to other doctors & payments for testing & further treatment by the specialist come out of the HMO Payment Funds paid to your Primary Physician - the allotted payment they’re paid monthly by the insurance company for your care, whether or not you actually see the Primary (or any other doctor they have referred you to) that month. They’re ideal patient is one that rarely has the need to consult them or specialists, or require testing (whether expensive or not) of any kind because all the money not spent on your care is how these HMO Primary Physicians profit from this system. Therefore you can see why some HMO Primary Physicians can be especially difficult to work with. If in fact your insurance is with an HMO, I would contact your insurance company and ask to be transferred to another Primary Physician on their HMO-approved list to see if you can get the new Primary Physician to finally give you a referral to a well-qualified & respected specialist in a field that does diagnostic testing for sleep disorders (as I mentioned before, the doctor that was finally my golden key was a Neurologist) & provides ongoing treatment & periodic assessments as to how you’re progressing. But before you call the insurance company, do your homework to pinpoint the best Primary Care Physicians in your area that are on your HMO-Approved Plan by reading the ratings & reports on your local doctors in the multitude of physician ratings sites online & by reading his/her educational background & number of years they’ve actually been in practice & give extra points for rewards, recognized accomplishments, & well-received research papers, along with reading each & every comment about each doctor - especially the negative ones for that doctor & his/her practice. HMO Primary Care Physicians generally tend to be in group practices to maximize their payment pool, reduce the costs associated with overhead to each doctor & to consult with & schedule On-Call hours. Research the information above about the other doctors in the group practice, too, once again paying particular note to the negative ratings & comments, because sooner or later it’s very likely that you’ll have to deal with one of the other physicians in the group for one reason or another. By the way, most people don’t know that they have the absolute right to note in their records that they definitely don’t want to be treated by one or more specific doctors in a practice & you can list the reason(s) why. The practice has to honor your wishes & work to either accommodate your wishes, or they have also have the right, unfortunately, to refuse to see you & can tell the insurance company that they’re going to refer you to another doctor, either in their own practice or another practice entirely. So be very picky when choosing your Primary Care Doctor when you’re on an HMO. Then also do your homework about the Specialists that accept your HMO plan so that you can tell the Primary Care Physician that you would really like a referral to a specifically named specialist, what field of specialty the doctor is in& why you think that specialty might be the most logical choice in diagnosing your symptoms & that according to that specialist’s website they are a participant in your HMO plan. Then be persistent. If the new Primary Care doctor also refuses to honor your request for referral to specialists & tests/treatments requested by specialists, ask your insurance company once again for a new Primary Care physician until you find one that will work with & for you - remember that the doctors are actually working for YOU in that you’re the one paying the insurance premiums. Some insurance companies like to put limitations on how many times you can change Primary Care Physicians within a certain amount of time, but if you come up against this problem you have the right to contact the National Board of Medical Insurance Adjustors (I’m not exactly sure that don’t they’re called this exactly, but if you read the fine print in your insurance plan documents or Claims’ Explanations Of Benefits (EOBs), they have to have the specific wording for conflict resolution & reporting options & will have the proper name of the agency). Secondly, you can tell an uncooperative Primary Care Physician that you intend to report them to the insurance company, the State Board Of Medical Examiners, or to post a negative comment about them on as many Doctor Ratings/Comments sites as you can (be very careful of what you say on these sites, especially in these days of libel lawsuits. Don’t make any embellishments or deviations from exactly what happened in your appointments & dealings with the physician & what exactly was said to you because it can come back to bite you when they try to sue you for libel/slander, & the attendant loss of reputation & income if anything at all isn’t absolutely true. This is another good reason to either record your conversations with the physicalian - & a reasonable doctor will have no problem with this, especially in that they do want you to give consideration to the professional advice & instructions they’re giving you. It’s also perfectly OK & highly recommended that you take a friend or family member with you to your doctor appointments - they can corroborate what was said & happened in your dealings with any particular doctor or practice. I don’t mean to frighten you off from contributing ratings/comments on these sites; I just want to caution you to be careful in your comments).
I truly hope you can finally see the specialist of your choice & get the testing you need to reach a definitive diagnosis & progress with a treatment plan ultimately & sooner than later. God Bless!
Hi Mother T! I forgot that I was going to update you all on my personal journey. I got my CPAP on September 30th, and have literally used it every night since then. The first night I slept with it on for 12’ 30". In the five weeks I have been on mine, I have experienced some wonderful changes. If I could measure fatigue from 0 (dead) to 100 (energizer bunny), I would say I was at about a 10. I could barely get out of bed, and five minutes after I did, I wanted to go back to bed. With the CPAP, it increases my energy level about 1 - 2 points most nights. I expect it will slow down as I continue on this journey, but - yay! Additionally, it decreases my pain level most nights. I used to be a 7-8 most mornings, with pain control required in the middle of the night. I haven’t needed nighttime pain control now for at least two weeks (gets me off of the Demerol (yay!)), and during the day I wake up with about a 3 - 5 pain level. I am getting so much done it is just amazing to me.
I hope that everyone has a good of an experience as I have had. I would not go without my CPAP for any amount of money in the world.
Hope everyone is doing great!
Wonderful answer Catmom123. The whole HMO model is complex and you have done a great job of explaining it. I would make one additional recommendation in addition to bringing someone with you - keep a journal day by day to record what is happening to you, and take it with you to your appointments. It is hard for a doc to say you are okay when you have a day by day record. Let us know how your efforts go? Thanks