I’m so frustrated and desperate for answers. Any feedback would be enormously helpful. I have about ten billion questions, but I’ll start with the basics.
My name is Quinn. I’m a 23 female with a history of anxiety, chronic depression, and allergies. I am excessively sleepy, have debilitating low energy and fatigue, and have been feeling more and more dysfunctional and foggy-headed everyday. I sleep an average of 10 hours a night, can hardly wake up, and feel like I have the flu once I do get up. I am unemployed, can't get anything done, and am usually too sleepy to drive.
I had a sleep study done in August of ‘06. I was diagnosed with Idiopathic Hypersomnia and mild Upper Airway Resistance Syndrome. The sleep doctor was extremely unhelpful and condescending to me. He said the UARS was nothing we needed to talk about, and the only treatment option was Provigil, and possibly antidepressants.
Here are the highlights of my sleep study (anything I don't mention was probably normal):
- Very fragmented and infrequent stage 3 sleep (19%)
- Zero stage 4 sleep (0%)
- 50 total minutes of REM sleep (15%)
- 18 awakenings
- 97 arousals (index 17.4)
*88 spontaneous
*7 PLMS
*1 apnea-hypopnea
*1 limb movement
- 3 total apnea-hypopnea (index .5), during supine, REM sleep
- Respiratory Distress Index: 6.9 (“mildly elevated”)
- Average sleep latency for the MSLT/nap test: 6 minutes (“pathologic range”)
6 months later, I’m far worse and started seeing a new neurologist. He ordered an EEG, brain MRI, and blood tests. He wants to rule serious things out before deciding anything. Chronic Fatigue Syndrome and “plain old depression” have been mentioned by more than one doctor as the causes for these problems.
My questions:
- What is causing the lack of deep sleep? These spontaneous arousals? The mild UARS? Chronic Fatigue Syndrome?
- How can I get to the root of this problem? Is it respiratory, neurological, or psychological?
- Instead of treating my sleepiness, shouldn't I be treating the poor quality of sleep? Would sleep medications help this problem?
Any feedback would be GREATLY appreciated.
Thank you,
Quinn
Were a significant number of your arousals respiratory effort related arousals (RERAs)? Have your physicians considered a CPAP titration study? Have you agressively treated your allergies and had appropriate testing to identify all major allergies & eliminate allergens as much as possible? I know of one case where a guy's food allergy was expressed as severe hypersomnolence -- eliminating the allergen cleared up his hypersomnolence.
I believe one of the many Guilleminault papers specified that it cannot be considered idiopathic (a.k.a. no known cause) hypersomnia if your arousal index is high and sleep architecture so poor -- by definition, idiopathic h.s implies that they cannot see a reason for your sleepiness. I will double check sometime in the next few days to make sure this is accurate.
Last edited by sunshine on Mon Feb 19, 2007 1:40 am; edited 1 time in total
I was diagnosed a few months ago with sleep apnea. I was sorry to read about your symptoms.
The quality of sleep is as important as the quantity. The quality of your sleep is very poor. With an arousal index of 17 and fragmented stage 3 & no stage 4 sleep, it’s no wonder that you are not feeling well! If you read through some of the posts, you will find that many people here have experienced similar symptoms.
I agree with Sunshine (above). One key question is what is causing the arousals. UARS can cause arousals and should be discussed. UARS is sleep disordered breathing and may be treatable by CPAP-type therapy.
Was CPAP-therapy offered to -or- discussed with -or- tried with you?
Was the sleep doc a Certified Sleep Specialist? These are often pulmonologists or neurologists who have a specialty in sleep medicine. For more info See FAQ posted by one of the moderators, Vicki, at http://www.apneasupport.org/viewtopic.php?t=2870
Also do a search for UARS in the search box at the top rt of the page. The post by CarlRPSGT and Linda are excellent and some others too.
Regardless - please consider taking your sleep report to a Certified Sleep Specialist to get a second opinion.
Looking at my data more closely, I have discovered 36 RERAs. I assume that this 36 was lumped into my total of 88 "spontaneous" arousals, and was not in addition to them. I am baffled as to why these would be considered spontaneous, if they are clearly respiratory-related.
Doctors have been relentlessly suggesting neurological and/or psychiatric reasons for my poor sleep, but I keep hitting dead-ends. Could this be a respiratory problem? My goodness, that would be a twist...but not unlikely. As I child I had "mammoth" tonsils, terrible allergies, and recurring sinus and throat issues. Ten years ago I had my tonsils and adenoids removed and turbinates (in my nose) trimmed. I only have mild allergies now--the surgery helped immensely.
As I mentioned before, my sleep doctor said that my mild UARS was nothing to discuss. He said my arousals were of unknown cause, and my hypersomnolence was idiopathic. He said it's all a mystery, we have no answers, and the only thing to do is treat the sleepiness with Provigil and possibly anti-depressants. Yes, this doctor is accredited and experienced. He has quite the resume and is a Big Deal in the Houston sleep scene. I hated him. Sorry, but I did. When I returned to him after 5 months of Provigil, feeling like death, he said I should try anti-depressants. He talked to me like I was a child, laughed at some of my questions, and when I asked if there were other treatment options other than SSRIs we could discuss, he huffed "like what?"
Oops, I kind of ranted there. To answer your questions, CPAP was not suggested at all. I have been working on my nutrition, sleep habits, and relaxation, but have done nothing allergy-related. Right now I'm working with a new neurologist, but maybe I'm heading in the wrong direction. Should I see a pulmonologist, ENT doctor, or maybe an allergist? Where do I go from here? I guess I could start by seriously cleaning my bedroom and bedding and getting some kind of air purifier?
[quote="qlope"]CPAP was not suggested at all [/quote]
Hello Quinn
I am not a medical expert so cannot give you advice.
It was very(!) distressing to read about how your doctor interacts with you. I am too upset to compose a well composed response.
You may already be aware that almost every symptom that you listed can be caused by or at least associated with sleep disordered breathing. The "mild" UARS and respiratory distress index could contribute to your not being able to reach and maintain the deeper sleep stages 3&4. Others have posted about being diagnosed with UARS and have been treated with CPAP-type therapy. Please read the posts "Diagnosed with UARS" at http://www.apneasupport.org/viewtopic.php?t=8330.
I find it hard to believe that CPAP-type therapy was not even discussed as a possible treatment option.
I hope that you will try to find a new doc - a pulmonologist who has a sub-specialty in sleep medicine. I would be willing to try CPAP or, even better, auto-PAP for a couple of months. These are medical devices which can be rented on a monthly basis. Just to see if any symptoms improve or are eliminated.
Please try to get a second opinion. And please keep posting here. I am hoping that some of the more knowledgeable and experienced forum users will add their input.
Yes, my doctor's attitude was extremely distressing. After ditching him I went to my family doctor, who is excellent but does not specialize in sleep. He referred me to a neurologist he thinks highly of, and this neurologist is who I have been working with recently. I have been researching UARS the last couple of days and feel more and more convinced that this could be the main problem.
After I get my neurological test results, I will look for a second opinion about the UARS. I really want to make sure I get someone well-versed and helpful this time. In the meantime, I will do my own research. Thank you for the links to the other posts; they are really helpful.
I know you can't offer medical advice, but I am curious. With only a "mild" case of UARS, would treatment still be CPAP? Do you think if I aggressively treated my allergies, I could feel improvements? Just wondering if this mask is the only option...of course, if it makes me feel better, I'll try anything.
I saw a pulmonologist who wants me to try CPAP and also sent me to the allergist. Even after the sleep study my pulmonologist still wanted me to go to the allergist. I was utterly shocked that I am highly allergic to dust mites and cats (I'm not at all allergic to other airborne allergens). And I guess I do have a small nose and/or inflammation inside my nose...I never realized I don't breathe too easily through my nose unless I do so very slowly.
If you are allergic to dust mites, my allergist told me to cover my mattress in a vinyl encasement ($10-20 at bed bath beyond type store; tape up the zipper to keep mites from migrating to bedding via the zipper).
Wash all bedding in hot water (I believe the minimum temp is 130 degrees Fahrenheit...might be 140, so check) weekly. Yep, weekly. Avoid feather bedding even if not allergic b/c it harbors mites -- synthetic is better I guess.
The paper my doc gave me suggested vacuuming regularly (up to twice per day!) but I am doing so 1-2 times weekly. I realized that my vacuum has been broken for a while now, sucking large carpet fibers but not dust. I was disgusted by what I picked up from my carpet when I fixed my vacuum!
I know it's hard when doctors seem to think your symptoms are strictly psychosomatic. I would certainly explore the CPAP & allergy lines of inquiry. A pulmonologist (or neurologist accustomed to treating UARS & sleep apnea) board-certified in sleep medicine might be better able to determine if your RERAs were significant enough to warrant a CPAP trial (I would guess a certain number is within normal limits). A good physician will consider your symptoms and responses to treatments without immediately writing you off before diligently including and excluding all potential causes of your symptoms.
i don’t know what is causing the symptoms. From what you’ve written, it’s reasonable to further explore both allergies and UARS. The allergy tests would help identify what specific substances you are allergic to.
Regarding UARS…
Since you have already been diagnosed with mild UARS it’s worthwhile to learn as much as possible about it and possible treatments.
I have tried to learn as much as possible about Obstructive Sleep Apnea Syndrome (OSAHS). I had to become my own advocate or I would never have been tested for or diagnosed with it. While looking for info about OSAHS, I have seen references to UARS. It seems that UARS is a newer investigated condition and the diagnosis and treatments are still being researched and established.
To give you a further idea of how much is known – PubMed.gov is an online listing of published scientific papers. There one can find over 10,000 items listed for OSAHS compared to about 300 for UARS.
I have been reading a book about sleep apnea that has some info on UARS. I put some quotes from the book below. The book is “Sleep Apnea The Phantom of the Night” version 2003.
Hope this is helpful.
Mary
_________________
Pg 64-65 UARS
“There are people who…..suffer from an obstruction of airflow. When they try to breathe, there is mild limitation on the amount of air that is drawn in; this triggers a response to increase the effort to draw in more air. If this increase in effort does not improve the airflow, there is an even greater effort, continuing until there is an arousal. The sleep lab cannot score this as obstructive sleep apnea syndrome because neither apnea nor hypopnea have been seen. Nonetheless, these events can produce the same symptoms as does sleep apnea syndrome.”
Pg 207
“Women often complain of insomnia linked to upper airway resistance syndrome, and over half of upper airway resistance syndrome patients are women. Upper airway resistance syndrome is caused by a partial relaxation and narrowing of the upper airway that creates a slight resistance to the flow of air. The effort required to overcome this resistance grows increasingly until arousal occurs. This causes sleep to be fragmented, causing excessive daytime sleepiness or the perception of insomnia. It is a newly recognized problem that requires special equipment and /or procedures to observe it and many facilities are unable to test for it, so it is likely to be underdiagnosed.”
Pg 204
“New evidence indicates that the whole spectrum of sleep-disordered breathing – including the hard-to-detect and often undiagnosed upper airway resistance syndrome, snoring, and hypopneas as well as apneas - has significant negative impacts on health and may even cause death.”
Pg 206
“The negative outcomes of snoring or upper airway resistance (even without apnea or hypopnea) may include impacts on almost all of the negative health outcomes listed for sleep apnea syndrome.”
Pg 214 (reference to treatment)
“People with snoring and light disorders of sleep breathing including apnea plus hypopnea index (AHI) of 5 or less; in addition to upper airway resistance may benefit from treatment. The treatments appropriate for mild sleep-disordered breath include CPAP, oral appliances, and certain surgical treatments.”
Pg 209 (of interest considering your history)
“Treatment of sleep apnea syndrome in children may include attention to allergies or other correctable causes of difficulty in breathing. If the adenoids and / or tonsils are shown to be causing the sleep-related breathing disturbance, removing the adenoids and tonsils can lead to a dramatic improvement in symptoms.”
More info on UARS below (and I promise to stop posting overloaded-posts now too).
Best regards
Mary
PG 65
“Upper airway resistance syndrome is difficult to detect. Making this diagnosis requires specialized monitoring techniques. The best currently available system for detecting upper airway resistance is to use ESOPHAGEAL PRESSURE MONITORING. This involves the insertion of a pressure monitoring catheter – a small tube – through the nose down to the level of the mid-esophagus. This enables measuring increases in effort that lead to arousal. Other methods include pressure transducer measurements of airflow, observing a crescendo snoring pattern (increasingly louder snoring), and monitoring of movement of the skin between the collarbones. These methods are not considered to be as reliable as esophageal pressure monitoring. The pressure transducer is not yet available in many labs because it is a new and complex procedure.”
Bao G,
Guilleminault C.
Stanford University Sleep Disorders Clinic, Stanford, California 94305, USA.
PURPOSE OF REVIEW: The term upper airway resistance syndrome (UARS) was coined to describe a group of patients who did not meet the criteria for diagnosis of obstructive apnea-hypopnea syndrome and thus were left untreated. Today, most of the patients with UARS remain undiagnosed and are left untreated. RECENT FINDINGS: Today, the clinical picture of UARS is better defined. We have learned that patients usually seek treatment with a somatic functional syndrome rather than sleep-disordered breathing or even a disorder of excessive daytime sleepiness. Therefore, most of these patients are seen by psychiatrists. In addition, recent technologic advances have allowed a better recognition of the problem. We have learned that obstructive apnea-hypopnea syndrome is associated with a local neurologic impairment that is responsible for the occurrence of the hypopnea and apneas. In contrast, patients with UARS have an intact local neurologic system and have the ability to respond to minor changes in upper airway dimension and resistance to airflow. New treatment options including internal jaw distraction osteogenesis are used and are promising for treatment of patients with UARS. SUMMARY: The clinical presentation of patients with UARS is similar to the presentation of subjects with functional somatic syndrome. To diagnose UARS, nocturnal polysomnography should include additional measurement channels.
PMID: 15510051 [PubMed - indexed for MEDLINE]
[Upper airway resistance syndrome]
1: Tuberk Toraks. 2003;51(2):216-26. Links [Article in Turkish]
Kokturk O,
Guven SF.
Gazi University Faculty of Medicine, Pulmonary Diseases, Ankara, Turkey.
Upper Airway Resistance Syndrome (UARS) is characterized with daytime sleepiness and cardiovascular disturbances, because of the repetitive increase of upper airway resistance leading to arousals. UARS, can easily be overlooked because the conventional polysonographic measurements are not sensitive enough to diagnose this syndrome, therefore the prevalence and morbidity of this syndrome is not known. Measuring the increased inspiratory effort by an esophageal balloon during the rising upper airway resistance is the gold standard technique for the diagnosis. Treatment of UARS is similar with Obstructive Sleep Apnea Syndrome (OSAS). In this article the clinical picture, diagnosis, and management of the UARS is reviewed.
I am sorry that you are struggline through this, sleep should not be difficult and yet here we all are. As for your doctor shame on him for dismissing your thoughts and concerns. Wonder what he is like if he has a problem but I digress.
I am now seeing a sleep specialist but it was a neurologist who finally listened to me and ordered a sleep study, none of the other doctors I went to considered it because I was thin, didn't snore, health conditions were normal. He should be able to help you (take him your results if you haven't already and have a list of questions so you won't forget). It would also be helpful if you had a list of things you have already tried. Maybe he'll agree to triation study to see if it is helpful or maybe rent a Auto Cpap to get an idea of a pressure setting. If the neurolgist doesn't want to treat this condition maybe a referral. I have learned with my child's doctor to phrase my questions for referrals along the lines of who would you go to and why. Since you live in major metro area you there are probably many qualified specialists to pick from. Start asking around and I bet you find someone who loves their doctors, most sleep doctors are pulmonary doctors. There is a list of specialist on this site. Wish I had known about this site before Iwas tested, I learned after that the sleep lab I went to wasn't accredidated.
Get tested for allergies to rule things out.
I am wondering about UARS for myself since I don't fall into the apnea profile, sleep in studies was minimal and they averaged the apneas based on the six minutes I slept on my back, total sleep time in initial study was 85 minutes, second study for triation was 100 minutes, (they woke my up on Ambien and couldn't get back to sleep). I have a rental Auto Pap for two weeks to check my pressure level, but for the 2 months I have had my CPAP I feel like I am finally getting a little bit better sleep, though I am still not where I would like to be, but at least now I have some hope of getting there. The mask takes a while to get used to and I am on my third to try to find a good fit. If you do get a triation study try different masks while you are there, in the real world most places will only let try them on, once you buy it is not returnable and they are expensive, and you might be restricted by insurance on how often you can buy one.
Good luck.
Karen
PS Sunshine, I know what you are talking about in terms of seeing the dirt from your home, I finally got a Dyson after pining for two years for one, the dirt I saw the first couple of times I vacuumed made me cringe.
Thank you so, so much, everyone. Your information has been extremely valuable. Mary, that was extremely thoughtful and helpful to pull excerpts from your book and post them. Everything you directed me to has been helpful. I'm trying to learn as much as I can about UARS.
I can't explain how relieved I am that UARS was brought to my attention here. I am really hoping that my problems are respiratory. I know that sounds silly...to hope for respiratory problems. But compared to mysterious neurological malfunctions, fibromyalgia, somatically expressed depression, and incurable unexplainable hypersomnia (some of the things my doctors have been suggesting), respiratory problems are tangible and more understood. There are treatment options. It's easier to explain and grasp. I might change my mind about that when I try a CPAP machine, but right now I'm just so relieved that my suffering might have a name (UARS).
Sunshine, thank you for your allergy-related info. I am allergic to dust mites and cats, too, as well as a million other things. Have you tried/heard of nasal irrigation to clear out sinuses and help breathing? I haven't had bad allergy symptoms since I had my tonsils/adenoids removed 10 yrs ago, but I could be suffering during sleep. How did this not occur to me? I guess my stupid sleep doctor did a good job of convincing me there is no explanation or hope (except, of course, with drugs that don't even relate to my condition).
Throughout my whole ordeal, I remain more and more convinced that the world needs to know about how important healthy sleep is!!! It's interesting that one of those articles says so many UARS or OSAHS sufferers end up in a psychiatrist's office. How many people like us have been given stimulants or anti-depressants to treat a sleep-related breathing disorder? Insane.
Again, thank you for all the information and support. I read everything and take it to heart. Please let me know if you think of anything else!
I finally saw a new pulmonologist/sleep specialist today, and I'm feeling very sad and confused. I did SO much research on pulmonologists in Houston, to get a competent one this time, and I was disappointed (again). I went in feeling confident and hopeful that allergies or UARS were to blame for my lifelong sleepiness. I was hoping he would send me to an allergist, do an E/N/T check-up, or suggest trying CPAP. It took a lot of pushing on my part to get to any of that. At first, he wanted to put me back on Provigil or try Ritalin or Prozac to combat my sleepiness. He was going off my first sleep specialist (the bad doctor)'s diagnosis of idiopathic hypersomnia.
I realize I only have "mild" UARS (index of 7), but my sleep study showed no deep sleep and 96 total arousals (36 were definitely respiratory). I have a history of ear, nose, and throat troubles and severe allergies. My mom's side of the family struggles with sleep apnea.
I told him all of this, of course, but he said it couldn't be allergies, but could possibly be UARS. He said we could try a CPAP trial (helloooo?!), but if "I didn't like the mask" or my MSLT showed that I was still sleepy after the trial (one night), we could rule out mild UARS as the cause of my symptoms. At that point, he would suggest drugs to treat the sleepiness, and we could prove that it's idiopathic.
I'm SO FRUSTRATED. I feel like I'm losing my mind. I have seen two highly recommended sleep specialists, one excellent neurologist, and worked with my family doctor relentlessly. I keep getting variations of "it can't be UARS" and DRUGS DRUGS DRUGS are the answer! All my research tells me that UARS can cause all my symptoms, but I keep getting told it's depression or idiopathic hypersomnia or possibly Chronic Fatigue Syndrome. But maybe I'm the one off base...I'm not a professional.
Is it possible that the UARS is so mild that it really isn't to blame? Is he right that allergies couldn't be affecting my sleep? Maybe I should just listen to them, and go with the wakefulness drugs??? I sure do feel like I'm fighting a losing battle.
He agreed to do a CPAP trial, but I'm worried he will do it half-assed. Where should I go from here?
Thu Apr 05, 2007 1:41 pm
tillymarigold
Joined: 01 Feb 2007
Posts: 447
Location: Albuquerque, NM
Well, you could come to Albuquerque, where my sleep doctor dx'ed me with UARS (RDI about 5.7) and said CPAP should be the *first* thing to try ... if that fails then we'll try the Provigil.
However ... have you actually seen your full data? I mean, I don't know why your doctor would say UARS isn't the problem, but just because you disagree doesn't mean he's wrong. For example, in my case, the diagnosis was also based on the shape of my throat (Mallampati classification) and on the fact that my airflow was decreased the whole time I was asleep, even when I didn't have arousals or desaturations.
The whole "mild" thing is BS because the index is totally unrelated to how bad you feel.
You probably know already that (1) apnea runs in families (2) many doctors believe UARS will eventually become apnea and (3) in fact, some people think UARS doesn't really exist but is just mis-analyzed apnea.
If you have sleep-disordered breathing (which includes SA, UARS, and probably some other things), then taking sleep medications won't help and could even kill you (because if your breathing stops, you won't arouse to start again).
Have you tried actually looking for a doctor who's board-certified in sleep medicine?
And what is your objection to drugs, if it comes down to that? I mean, I don't want to take drugs I don't need either, but if I were diabetic I'd take insulin, if I had hypothyroidism I'd take a thyroid drug, if I had AIDS I'd take an antiviral, so if CPAP doesn't work and my doctor says Provigil is the next thing to try, then damn skippy I'll take it. It's better than feeling like this.
Edited to add: One night?! A normal trial is either two weeks or a month. Mine is set for 30 days although my sleep doctor told me that we'd probably be able to tell in 2-3 weeks if it was helping.
You're right about the apnea and sleep medications. Good points. Actually, both the doctors I have seen are board-certified in sleep medicine and well thought of in Houston. That's why I feel so frustrated. This board-certified sleep doctor/pulmonologist didn't listen to my chest, look in my throat or nose, or think that allergies could be affecting my breathing! Seriously, the more I think about it, the more appalled I am. It was clear to me that he didn't know how to read a sleep study. I do have the full results, and I've poured over them for months now.
Also the drug thing...I'm not opposed to drugs at all. I've been on and off drugs for different symptoms my whole life. It's just that my first doctor treated my sleep problems with Provigil, and I was on it for 5 months and only felt like it was masking the problem. It made me feel alert in the morning, like a couple cups of coffee. But I could still nap while on Provigil, and many mornings I would have to go back to bed after taking the Provigil, because I had slept so poorly the night before. After 5 months, I went off it and felt just the same. I'm willing to try other drugs eventually, but I would like to see if CPAP helps. I would consider Provigil or Ritalin again, but I want to be sure there isn't something that could relieve the source of the problem.
Really? I didn't realize a trial was so long. He said I should take the MSLT test the next day and we'd be able to tell. I thought that was fishy. Sigh.
I think I may have to see yet another doctor before I go through with the trial.
Thanks!!!
Thu Apr 05, 2007 6:14 pm
tillymarigold
Joined: 01 Feb 2007
Posts: 447
Location: Albuquerque, NM
Really? I didn't realize a trial was so long. He said I should take the MSLT test the next day and we'd be able to tell. I thought that was fishy. Sigh.
I think I may have to see yet another doctor before I go through with the trial.
Thanks!!!
I do know the feeling, right now I'm self-medicating with about 400-500 mg per day of caffeine (two cups of coffee, a large energy drink, caffeinated mints...). It's better than nothing, but I'm hoping the CPAP works (as I'm getting a home trial, I have to wait for a loaner machine--hopefully by the middle of next week).
Well, I don't know what sort of trial the doctor was proposing. They're not planning to do an MSLT with me, but probably are with you because for some reason they think you may have multiple or rare-ish sleep problems. So perhaps one *can* do just a 1-night CPAP trial before an MSLT. Or are you talking about a titration study in a lab (which is usually one night), not a home trial? I was referring to how long one normally uses a CPAP or AutoPAP machine at home when they're trying to see if one will respond to CPAP treatment long-term. I've heard of trials as short as a week, but as I said, 2 weeks or a month is usual. But your sleep doctor may have something else in mind. As I said, titrations usually are one night.
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It's better than nothing, but I'm hoping the CPAP works (as I'm getting a home trial, I have to wait for a loaner machine--hopefully by the middle of next week).