This is a great article, posted 2-13-15, that diffuses stereotypes. Dr. Meskill (who trained at Stanford) describes a 29-year-old woman misdiagnosed at two sleep labs and ultimately diagnosed with UARS. Her story is eerily similar to mine. Tongue scalloping, false negative sleep studies x 2, etc.
Thank you for posting this article which I forwarded to my niece. She recently had a sleep study done on her five year old son that did not show OSA but he had many leg movements and arousals. He has been using an oral appliance for several months that appears to be helping as the night time awakenings have lessened and he no longer has any incidents of waking up gasping/coughing. She is continuing to work with a pediatric sleep physician along with the dentist but this article really highlights that the reasons contributing to poor sleep may be varied but all have negative impacts on our health and need to be addressed.
Hi Susan, It is imperative that children with OSA/UARS be evaluated for and fitted with an OA to enlarge the volume of the mouth. This will give the tongue the room it needs to avoid obstructing the airway. The back of the tongue is responsible for 90% of OSA and likely a large proportion of UARS. IMO, it is important to widen the maxilla and mandible prior to suture closure (i.e. in children and adolescents). The majority of adult patients with OA/UARS could have benefited by an OA and likely avoided the development of their illness if so treated.
@JoeBorelli Hello, I'm new in the forum and trying to know as much as possible about UARS. I've been experiencing fatigue and cognitive decline (bad working memory, short attention, slow thinking) for about 15 years. I've investigated all the possible medical conditions (including psychiatric and psychological) that could cause these symptoms but everything seems normal. Recently I've tried a sleep study, as I have breathing problems, snore and suffer from intense bruxism, but the result was negative (AHI=3). After reading about your story, I've started to hope that UARS could be the explanation and that the lab did not check it properly (I had 40 arousals/hour, defined as "spontaneous"). Please, can you say if insomnia is essential for suspecting UARS? This is not my case, I almost never wake up during the night. Thanks a lot for your help! Cristina
In order to determine whether you have UARS, you will need to get a sleep study done at a sleep lab that uses esophageal manometry. An esophageal manometer is the instrument used to detect respiratory effort related arousals (RERA's), which are the key indicator of UARS. Most sleep labs do not use this instrument, but Stanford Sleep Medicine Center pioneered the diagnosis of UARS, so you could go there for a sleep study, or else contact them to ask if they can suggest a sleep lab in your area that uses this technology.
They said that the breathing signals could be calculated from the oronasal thermistor and the pulse transit time.... I've read that Stanford is the best center for this diagnosis, but I live in Italy and I would like to be more confident in this possible diagnosis before planning a visit there. That's the reason of my questions about insomnia. Also, I experience profound and unexplainable fatigue rather than sleepiness. But the worst for me are the cognitive deficits, similar to those Joe describes in his posts.
I am not an expert, but my opinion is that, based on your description, you should get checked for UARS. Although you do not wake up at night, if your sleep study indicated that you are having 40 arousals per hour, then clearly your sleep is very disrupted. But I do not think there is any way to be confident in a UARS diagnosis before a sleep study has been done with detection of RERA's.
I would be surprised if there isn't a sleep lab in Europe that can diagnose UARS. Maybe you should try contacting all the sleep labs that are not too far from your location to ask if they can detect RERA's and diagnose UARS. Maybe you will find one that can do this for you and is easier for you to get to than Stanford.
After discovering UARS, I took contact with a local certified sleep center asking to check for it, but they seem to consider UARS an obsolete diagnosis, maybe they include it in the world of apnea disorsers. Maybe, not sure because no specific sensor was used and also the nasal cannula was not considered foundamental. Of course, I need to make a second test in Italy, I'm looking for a doctor that can specifically check RERAs.
About the compliance of the diagnosis with my sumptoms, I can say that I rarely feel sleepy, but almost constantly fatigued, spacy and foggy. These symptoms are very real, as I had to leave my job as engineer because my cognitive performance declined too much... I don't know if this can suggest UARS, but I've no other explanation after 4 years completely dedicated to searching for a diagnosis...
But, if you are not able to get a definitive diagnosis soon indicating for certain whether you have UARS, another option is that you could just go ahead and try CPAP therapy. If CPAP relieves your symptoms then you will know that the symptoms were caused by UARS/sleep apnea. However, if CPAP does not relieve your symptoms that could mean either that you do not have UARS and your symptoms are caused by something else, or that you are not using CPAP effectively enough. (It can take some people a lot of time and effort to figure out how to optimize their CPAP therapy enough to start feeling the benefits from it).
Also, even without a definitive diagnosis of UARS, you could talk to an ear, nose, and throat doctor about the cause of your breathing problems and snoring. If there is a way of correcting your breathing, it is always possible that it will also help relieve your sleep fragmentation and cognitive symptoms.
As for the question of whether insomnia or daytime sleepiness is necessary to suspect UARS, I am not sure. It does seem unusual for UARS to present without either of these symptoms. But the 40 EEG arousals per hour that were detected in your sleep study suggest that your sleep is very fragmented. To me it seems quite plausible that this sleep fragmentation could be the cause of your cognitive symptoms.
The hope in UARS came from reading that it often presents with fatigue rather than sleepiness. However, this should be checked with UARS patients or real UARS experts, I'm also suspicious that sleepiness is not evident for me, altough my fatigue is very similar to a state of sedation. I've started to read some posts about UARS in cpaptalk.com, thanks for your hint.
The cause of my snoring is probably an enlarged turbinate. It's difficult for me to breath during the day as well and the way the obstruction comes and goes matches with hypertrophic turbinates. Maybe I can try some specific products, strips and spray, and see if they help with my fatigue and cognitive performance. This can represent an important clue....
I am a patient recently diagnosed with UARS. My symptoms include insomnia, fatigue, and cognitive impairments (slow processing speed and reaction time, poor memory and concentration). I also occasionally have waves of sleepiness. I have had these symptoms for about 25 years (since adolescence) and, like you, my career, and other important parts of my life, have been substantially hampered by this situation. The first time I had a sleep study done, my AHI was 3 and so I was not diagnosed with sleep apnea. I recently had a second sleep study done at Stanford with esophageal manometry and my AHI including RERAs was 11, so I received a diagnosis of obstructive sleep apnea (the UARS type), which is thought to be due to a little bit of maxillary deficiency in my case. I am currently in the process of learning to use CPAP. I have not yet gained relief from my symptoms, but I am hopeful that I will once I have figured out how to get the CPAP adjusted right and the mask comfortable. I am also receiving myofunctional therapy, but the expected benefits of this are limited because of my age in mid-adulthood.
If you suspect enlarged nasal turbinates, I would suggest seeking a consultation with an ear, nose, and throat doctor to get confirmation of this. If it is true that you have enlarged nasal turbinates, then you could ask the doctor whether radio-frequency ablation of the turbinates would be right for you. This procedure reduces the size of the turbinates and is not very invasive. Also, have you tried any product like Breath Right Nasal Strips or Max-Air Nose Cones to hold the nostrils wider open?
I'm glad to meet someone with UARS! Also my history is very long, it's 15 years that I suffer from symptoms of fatigue and cognitive impairment (exactly like yours, slow processing, bad working memory, poor attention and executive functions, a status that can be defined as "brain fog"). I've visited all the possible specialists (neurologists, rheumatoligts, experts in infectious diseases, internists, nutritionists, unorthodox doctors,...) and recently I've met an expert in chronic fatigue syndrome. Everybody says that the symtoms I refer are not compliant with their area and suggest a psychiatric. I'm sure this is not my problem, but I tried also this direction, again with no result. At the end, everybody tries to convince you that you're fine, maybe you've only too high expectations....
It's interesting to know that Stanford assigns a diagnosis of UARS with your index of respiratory events. Did they confirm that the results of your sleep study are compliant with the symtoms you refer? The specialist in Italy explained that the cognitive impairment occurs in case of severe OASA, but of course the experience at Stanford is far superior... The story of Joe suggests that the deficits can be compensated using the mask for some months, I hope this is the case for you as well, I know the frustration that this situation can produce, expecially when protracted for such a long time...
I definitely must find a sleep center that can diagnose UARS, it's not so easy in Italy, they seem to manage only OSAS. I've contacted Stanford a week ago to understand if it is possible to receive a remote support, they replied to send all the medical documents translated in english for a first evaluation. I hope this is the right direction for my diagnosis! In the meanwhile I'll try the nose products you've suggested. For the visit with the ear nose specialist, I would wait to have a diagnosis for my symptoms before proceding with a treatment.
It does seem that our experiences have a lot of similarities, but there is one thing that is very different between them. In my case, I am having a lot of insomnia. On a typical night I wake up spontaneously in the middle of the night and remain awake for several hours before I can fall back to sleep. It does not feel like I am hyper-aroused; it just feels like my sleep drive is too week. My sleep doctor thinks that my OSA/UARS may be causing my insomnia, as this can sometimes happen in UARS cases, and there is no other likely cause to explain why I have insomnia. So, in my case, I don't have a really large number of respiratory events, but they do seem to cause me a lot of sleep loss because of my inability to fall back to sleep quickly. In your case it sounds like you have a lot more arousals, but you fall back to sleep very quickly after each one, so your problem is sleep fragmentation, not insomnia. In my case, it is not yet clear whether my fatigue and cognitive symptoms are primarily caused by OSA/UARS or by insomnia. If I succeed at correcting my breathing with CPAP and my symptoms go away, then that would make it clear that my primary problem was OSA/UARS.
I can't imagine how difficult your nights can be, I've never suffered from insomnia. I used to go to bed and sleep until morning; now I wake up 2 or 3 times per night but I fall asleep in a few minutes. That's why I've never suspected a sleep disorder, and maybe it is not my real problem. But your symptoms are very suggestive, if your sleep efficiency is so low, then the brain cannot consolidate memory and recover from the day. I'm not informed about the possible reasons for insomnia, I've read that UARS is a strong trigger, but probably you've some additional factors that make you stay awake for hours. Sleep science has a lot to discover...
If you've already excluded hyper-arousal (via heart rate variability test?), I can suggest that the insomnia can be a sort of body conditioning. I've read somewhere that the patient avoids to sleep beause he associates it with the struggle to breath. Are you confident in the sleep doctor at Stanford? Do you think he's going to examine all your sleep anomalies? After 25 years of suffering, you must receive answers and solutions!!
If you've already excluded hyper-arousal (via heart rate variability test?), I can suggest that the insomnia can be a sort of body conditioning. I've read somewhere that the patient avoids to sleep beause he associates it with the struggle to breath. Are you confident in the sleep doctor at Stanford? Do you think he's going to examine all your sleep anomalies? After 25 years of suffering, you must receive answers and solutions!!
I have not excluded hyper-arousal with any test, I just meant to say that I do not feel hyper-aroused. I do not experience any sensations like muscle tension or a "running mind" when I am awake at night. I feel comfortable, relaxed, and tired. But for me, strong enough sleepiness to put me to sleep seems to come and go in waves, so sometimes I just don't have it during the night when I need it. Then a strong wave of sleepiness will sometimes come over me during the day when it is not wanted. I am considering getting cognitive behavioral therapy for insomnia (CBT-I), but I wanted to make some progress on treating my sleep apnea first because doing CBT-I with untreated sleep apnea seems like it would feel like torture.
It seems that the last comment I wrote here did not show up for some reason. But to summarize again: I have been working very hard at developing that ability to sleep with CPAP, and I am currently able to sleep with it for 4-5 hours. I cannot yet tell for certain whether it provides a therapeutic benefit to my sleep, since I am not yet able to sleep with it for a full night. So, I will continue working on it and give it some more time.
Hi! Unfortunately Stanford finally replied that it is not possible to have a remote consultation. I'm searching for a sleep center in Italy that can make this diagnosis, but it's difficult to know in advance if they apply the proper criteria or just check the apneas and oxygen desaturation. In the meanwhile, I've managed to check my nose with an endoscopy, as my breathing problems are getting worst. Hopefully this test can activate a new diagnostic path leading to the assessment of the degree of severity of my obstruction and maybe to a serious analysis of its consequences...
I am very sorry to hear that. Did you try asking Stanford whether they know of any sleep doctor in Italy who diagnoses RERAs?
It is good that you are getting you nose evaluated. Even a mild degree of breathing obstruction can cause UARS. I have had mild chronic rhinitis (i.e. runny nose) my whole life and it is possible that that may be a contributing factor in causing my UARS. I am currently seeking evaluation for allergies to try to determine the cause of my rhinitis and if it can be treated.
I've also reconsidered other possible diagnosis, but it seems that I'm not compliant with any disease... The point is that I've no other signs, if I exclude fatigue and cognitive impairment, so also CFS is doubtful (and honestly I don't think this is my case, as my immune system seems very efficient...). To be precise, I can add that I have cold hands and feet and a mild orthostatic hypotension, but these are again very generic signs (altough associated with UARS clinical features).
I also usually have cold hands and feet and feel colder than most other people in cool temperatures. My blood pressure is usually a bit low when it is measured at the doctor's office (usually around 90something over 60something) and getting up too quickly can definitely make me feel light headed. I have also fainted multiple times in my life, apparently due to dehydration and low blood volume.
And you? Any change/ progress? It would be nice to have a direct contact via e-mail. Do you know if it is possible to share the mail address in a private area?
I am still working on adjusting to CPAP therapy. I have found solutions for many of the disturbances that CPAP can create, but still have at least one more CPAP problem left to solve. I am currently trying to train my tongue to stay pressed against the roof of my mouth while I sleep so that the air from my nasal pillows CPAP mask can't get into my mouth and cause mouth leaks (or puff up my cheeks when I have my lips taped closed). When I have accomplished that, hopefully I will be able to sleep better with CPAP. (One sleep doctor told me that developing the ability to use CPAP is kind of like peeling the layers of an onion: first you have to solve your biggest CPAP problem, then your next biggest, and so on.)
This forum does not seem to have private messaging, so I don't know how to exchange email addresses here. I suppose we could use a different website to send private messages to each other, such as cpaptalk.com or patientslikeme.com.
Hi! I hope that in the meanwhile you've improved your compliance with the mask, it seems a huge job. However it is good to be assisted by a doctor you trust in. For sure you know the frustration of struggling completely alone against a ghost... Good luck for your progress! On my side... My ORL visit resulted in a diagnosis of deviated septum and enlarged turbinates, no way to fix without surgery. I'll mange to use a spray to reduce the congestion. I've scheduled a visit with a new sleep specialist in Italy, selected because he's cooperating with Stanford in many research areas. He's specialized in the analysis of the EEG, specifically the CAP cycle. I cross my finger to receive a conclusive answer. My biggest doubt about the diagnosis of UARS is that I don't experience insomnia at all. I've recorded my nights with a PC app and found that I often emit a click synchronous with my breathing cycle. This is very strange....
That is good news that you have found a sleep specialist in Italy who is connected with Stanford! I hope he will be able to give you a conclusive diagnosis as to whether you have UARS. It seems to me that your deviated septum and enlarged turbinates could cause UARS, and the clicking sound when you sleep makes me even more suspicious of this.
As for myself, I have made a lot of progress with my CPAP usage. My tongue training efforts paid off and I am now able to sleep all night long with the CPAP mask on and the air pressure at the lowest setting, 4-7. This air pressure is not therapeutic for me, but it still feels like a huge breakthrough for me to be able to use CPAP with little enough disturbance to be able to keep it on all night. My next step will be to work on increasing the air pressure I can tolerate in the hope of finding a pressure that is therapeutic for me and relieves my insomnia and fatigue.
Hi Hope. Have you had the consultation with your new sleep doctor yet? I am curious whether the doctor thinks your symptoms could be caused by UARS.
Hi PatientVioletBear0961, it's a long time I don't access the forum, essentially because the visit with the new doctor didn't produce any result. He sent me to see a dentist, to check if I needed an oral appliance to advance my jaw; the dentist didn't confirm this indication and suggested that the erosion of my teeth was the result of reflux instead of bruxism. So, here's another round to a new doctor who prescribed the measure of my esophageal pH over a 24-h period. I'm really tired and my symptoms are getting worse. How are you? Are you now used to the mask? Improvements?
Hi Hope! Good to hear from you again. I, too, have been away from this forum for a long time, but just checked it again today and saw your note.
So, you still haven't been able to get a definitive diagnosis as to whether you have UARS? Maybe you should again contact the sleep doctor that you saw, point out that you are still having very problematic symptoms, and ask if the doctor can give you a definitive diagnosis as to whether, or not, you have UARS. I think that is what I would do, but another option is that you could consider planning a trip to Stanford to get a diagnosis. I hope that you eventually succeed at getting a clearer diagnosis.
I have made a lot of progress with my CPAP therapy, but I have not achieved therapeutic efficacy yet. So I am still living with daily fatigue and cognitive impairments. After much experimentation with many different masks and configurations, I did eventually find ways to solve all of the mask leak and mouth leak problems I was having, which felt like a huge breakthrough and accomplishment. Then I tried increasing the air pressure of my CPAP to see if I could find a pressure that is therapeutic for me. There is an air pressure above which the CPAP machine data indicates that I have fewer flow limitations, but I have little ability to tolerate that higher air pressure due to a different problem that it causes: I have found that at higher air pressures I get "aerophagia" and become painfully bloated. In other words, the CPAP machine pumps air into my stomach. So, that is the problem I am currently working on solving in order to progress with my CPAP therapy.
Hi! Sorry to hear that you're still struggling with your symptoms, are the doctors optimistic for achieving a solution? It seems you're particularly intolerant with the mask, isn't a dental device suitable for your case? My diagnosis is still "in progress"; after many thoughts, I decided to try again with the last sleep doctor and he requested a sleep study, especially for the analysis of legs movements and autonomic functions. I was very nervous and couldn't sleep well, but the doctor is now interpreting my signals and will contact me to explain the results. I hope he can find some clues, at least to confirm the origin of my mysterious symptoms and concentrate the efforts in the area of the sleep disorders. I'm quite confident this is the right direction, but I'm not the typical patient (too thin, too young, tired but not particularly sleepy,...) and this makes the goal very challenging....
I hope your new sleep study results will provide useful insights. I would think that what would be most useful would be a sleep study with esophageal manometry, since that is the definitive way to diagnose UARS.
I have not tried a dental device because I have a bit of temporomandibular joint dysfunction (TMJ). It is not very bad, but it does cause me some significant pain sometimes. So my doctor thought it best not to manipulate my jaw, so as to avoid the risk of worsening that problem. I am inclined to keep trying with CPAP because, at this point, I have found solutions for so many of the CPAP problems I was having, I think I might be close to getting it all to work. I have an idea for a potential solution for the aerophagia problem that is now the main barrier to my success with CPAP, but it is going to take some time to try it out.
Congratulation for your results with the CPAP! I suppose that the tuning of the pressure will require less effort on your side, but I'm sure you now feel anxious to get some signs of improvement from the therapy. I wish you to see the light after this long tunnel! My visit is planned at the beginning of August and I'm living this period in different moods; sometimes I'm optimistic, other times I'm afraid that the diagnosis will be negative again,.... This also depends on the level of my energy during the day. When you feel exhausted it's hard to think positive! I'll let you know the opinion of this new doctor (University of Parma). At least I hope to come to a clear understanding of the quality of my sleep and its link with my fatigue disorder.
I am excited for you about your upcoming doctor's appointment! Since this doctor is an expert at EEG analysis, it seems like he should be in a good position to tell you whether your fatigue and cognitive impairments could be caused by sleep fragmentation or some other problem with your sleep quality.
In the mean time you could try experimenting with the use of nasal strips, sinus rinse, and decongestant nasal sprays at night to see if any combination of these makes a difference to the clicking sound that your breathing makes when you are asleep, or to how you feel the following day. Good luck! I hope that you will soon have a clearer answer to your problem!
By the way, I am curious what app you used to record your breathing sounds during sleep, since I may want to do that also.
I've downloaded a free PC application: Audacity. It allows to program a recording session, specifying start and finish time. The resulting file can capture several hours and can be reproduced by the application, in audio and video (signal amplitude) mode. I recommend it, it's complete and easy to use. (Just be sure to disable the power saving options of your PC, to avoid they stop the ongoing acquisition while you're asleep).
Thanks for your support! I feel confident about the sleep specialist I've chosen, but I'm aware that my symptoms are not standard for a sleep disorder. I hope that the clicking sound, in addition to snoring, can suggest a diagnosis; have you ever heard this behaviour?
No, I haven't heard of it, but it might be a clue about your condition. Since you said the click has the same rhythm as your breathing cycle, it seems like it is probably produced by part of your airway. When you see your new sleep doctor, I think you should bring the sound recording with you as well as your sleep study results.
I just wanted to update this comment because I recently tried the Oxy-Aid nose stent and found that it works better than nasal strips for holding the nostrils open while sleeping.
