Advice on what to do next (likely UARS with no official diag

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Username5102
Posts: 4
Joined: Tue May 05, 2015 1:43 am

Advice on what to do next (likely UARS with no official diag

Post by Username5102 » Tue May 05, 2015 3:30 am

(this post might be a disorganized, but bear with me)

The background information:

I'm male, 21, I live in Canada and I'm somewhat overweight. I've had some sort of sleep problem for nearly the last 3 years, and suffice it to say that it's completely destroyed my life. To quote a previous UARS post:
My symptoms are debilitating. I haven't worked full time in three years and haven't worked at all in the past year. I used to love my job and love my life; now I just try to make it through each day.
(from apneaboard.com)

This describes me quite accurately. I was also forced to drop out of university because I couldn't make it to my classes no matter how hard I tried.

The symptoms I've had: wake up daily with headache, headache usually persists throughout the day in varying intensities, feeling unrefreshed no matter how much or how little sleep I get, heavy brain fog, trouble concentrating/problem solving, memory problems, significant fatigue and probably a few more I can't remember. Note that I'm not sleepy throughout the day, just tired in the sense that I don't have the energy to do much.

I've read numerous medical journal articles on UARS as well as info that Dr. Steven Park and Dr. Barry Krakow have written and it seems to hit the nail on the head in regards to what I'm experiencing.

Out of interest, I tried setting an alarm set to go off every 30 minutes past an initial 6 hour mark and that continued for 6 hours. I felt the exact same after a night of that compared to sleeping and waking without an alarm. This seems supportive of multiple RERAs in my natural sleep.

I had a take-home sleep study done in early November with an ARES Unicorder (nasal cannula measuring airflow, microphone for snoring, accelerometer for body position and movement, EEG recording, and pulse oximeter for those unfamiliar). Unfortunately I wasn't given a copy of this study and it's incredibly hard to get in touch with people who can get me a copy, but going off memory, my AHI was 8, the amount of RERAs was something like 16-25 giving an RDI of 24-33. Not particularly high, but apparently some cases of UARS can be paradoxical in which their symptoms are more severe than an equivalent or higher amount of apneas and hypopneas. The data was interpreted by a sleep specialist and they said there was a high chance of upper airway resistance, and either a MAD or CPAP would help. My family doctor said I could see a pulmonologist and get an APAP trial, and I just had that appointment today, much to my disappointment.

The pulmonologist I saw told me blankly "it's not sleep apnea", and that my symptoms weren't related to a sleep disorder, but instead the sleep problems were caused by something else. He suggested chronic fatigue syndrome, and told me to do 30 minutes of exercise per day, such as a walk, but I told him I've been going on a walk 1 hour long daily walk for weeks with no change. After pestering him for a good 10 minutes he decided to fill out a CPAP trial form as well as an in-lab sleep study request form. The wait time on the sleep study is about a year or more, but he marked it as urgent so instead it should only be "several months." I asked about wait time on the CPAP trial and they said it would take until mid-July or August.

Some other information of relevance: I told my doctor I was depressed in February 2014, because who wouldn't be after their life took a complete U-turn and started heading in the opposite direction, and he gave me anti-depressants. I tried these at varying doses and they had no effect and have discontinued them in June. I also had severe iron-deficiency anemia for 1-2 years, possibly more, but I've since had iron infusions that restored my iron to a healthy level but caused no change in my energy levels or sleep quality. I'm also low on vitamin D, but I take daily supplements.

What I need advice on:

The above wait times are completely unacceptable seeing as I've already lost 3 years of my life to this. This is compounded further by the fact that I'm running out of money due to student loan repayments being automatically withdrawn from my account for the last half a year.

I have a friend in the US whose grandfather is a renowned sleep specialist, and he's offered to get me a refurbished APAP machine for cheap ($300 or less). My problem with this is that while I'm 99% sure that I have UARS and a CPAP would help me, I also have doubts, because it doesn't work for everyone.

In October of last year, I had 4 or 5 perfect nights of sleep out of the blue. I have no idea why or how, but I slept for 3-5 hours each night and woke up incredibly refreshed, no brain fog, no headache, and an abundance of energy. This makes me think that whatever underlying factor is causing my UARS is easily fixed. I've tried replicating those nights many times ever since, but I've never figured out what the secret was.

I'm wondering what people here think I should do: accept my friend's grandfather's offer and take a cheap APAP and hope it works, or wait a few more agonizing months for my 2-4 week trial of APAP to try it risk free. Or is there another option (keep in mind that I don't have medical insurance, but do have free healthcare because Canada)?

There's a bunch more information I could share but I shouldn't make this post too long. If you need more information, more details or clarification, let me know.

Thanks everyone

P.S. If anyone has a suggestion on other forums I could post this on, that would be nice as well. I've currently posted on apneaboard.com as well as here.
Last edited by Username5102 on Tue May 05, 2015 5:35 am, edited 1 time in total.

User avatar
Julie
Posts: 19899
Joined: Tue Feb 28, 2006 12:58 pm

Re: Advice on what to do next (likely UARS with no official diag

Post by Julie » Tue May 05, 2015 5:08 am

Hi, I would be very careful about deciding at this point that you have UARS and not apnea, and because I don't know if in fact your home test was very good - the cannula thing is rather out of date and you didn't have some of the standard in-lab tests - or interpreted well, I'm inclined to think you may well have obstructive apnea - and it could be worse if your a back-sleeper (that provokes more apneas) rather than a side-sleeper, but in any case, your results are yours by law and your doctor is the one you need to get them from, not a lab or tech. I would definitely take the offer of the machine for now and let us help you get set up. What happened in Oct. (3-4 nights of great sleep) could have been due to anything, possibly your having lost (but not been aware of it) a few lbs, or perhaps coming out of a summer of seasonal allergy symptoms that interfered with respiration, etc. Do get hold of your study results though and see about getting that machine. You may have UARS, but I wouldn't want to base your future therapy, etc. on the way things were handled at the time.

User avatar
49er
Posts: 5624
Joined: Mon Jan 16, 2012 8:18 am

Re: Advice on what to do next (likely UARS with no official diag

Post by 49er » Tue May 05, 2015 5:29 am

To add to Julie's excellent post, if you accept the offer of getting a used APAP machine, you need to make sure it is a data capable machine. Forum member, krelvin, has created this excellent website so you can verify that it is.

https://sleep.tnet.com/cmd

You will also need a mask to wear when using the machine. I would start to at least get an idea of what is available by visiting our host, https://www.cpap.com. If you can breath through your nose during the day, you're a likely candidate to wear a nasal/nasal pillow mask. If you breath through your mouth, you need a full face mask. Maybe the sleep doc who would be getting you the machine can also help you in figuring out which mask might be the best option for you. And once you decide what might work the best, if you post what you need, a member might be able to sell it to you very cheaply.

49er

Username5102
Posts: 4
Joined: Tue May 05, 2015 1:43 am

Re: Advice on what to do next (likely UARS with no official diag

Post by Username5102 » Tue May 05, 2015 6:08 am

Hi Julie, thanks for your reply

I thought it was sleep apnea before, so I purchased both a recording capable pulse oximeter as well as a high quality microphone and recorded myself sleeping for about 14 days last year. The sound recording showed multiple periods of what seem like strained breathing (my breathing would gradually get louder and more forced, like breathing through a straw but not getting enough air so trying to inhale harder) followed by what I think were arousals (sharp inhale followed by shifting around in bed and licking/smacking of lips), the process would then repeat all night. The oximeter recording showed only one or two desaturations per 10-12 hour night, usually from 98% down to 92-94%, and usually in the last 1-3 hours of sleep.

The take home sleep study I had done did say that my AHI was significantly higher when I was on my back, but I've tried sleeping on my side and stomach with no significant changes in sleep quality or fatigue.

As for the couple nights of good sleep, I don't believe it had anything to do with weight. I had a summer job in 2013 and I had lost like 40lbs due to the physical nature of the job and changed eating habits but still had no change in sleep quality or fatigue - I'd wake up for work, do my shift, come home and sleep straight until my next shift, nothing else. I've thought that it might be something to do with allergies/congestion (I don't have allergies as far as I know) so I've been thinking of trying a Neti pot as well as something I found out about today, Afrin, a nasal decongestant spray.

User avatar
Julie
Posts: 19899
Joined: Tue Feb 28, 2006 12:58 pm

Re: Advice on what to do next (likely UARS with no official diag

Post by Julie » Tue May 05, 2015 6:30 am

Hi - thanks for the info, it'll help sorting stuff out... Btw, your 'desats' are not really desats as they stayed above the 88-90% level. I know you're young but have you had testing for low thyroid, low T, Vit D levels, etc? And you'd be surprised how lousy anemia can make you feel, though you do say your levels are back up. And 49er was right about the machine - 'data capable' meaning that it gives more than compliance stats, which are all the insce. co's seem to care about. Beginnning to wonder now if you're right about the UARS... just don't assume it yet.

User avatar
robysue
Posts: 7520
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Contact:

Re: Advice on what to do next (likely UARS with no official diag

Post by robysue » Tue May 05, 2015 8:09 am

Username5102 wrote:Unfortunately I wasn't given a copy of this study and it's incredibly hard to get in touch with people who can get me a copy, but going off memory, my AHI was 8, the amount of RERAs was something like 16-25 giving an RDI of 24-33.
In the US, an AHI = 8 on a reliable home sleep test is high enough to earn a diagnosis of mild OSA all by itself. Add in the RERAs, and in most places that RDI = 24-33 could land you with the label moderate sleep disordered breathing. Add in the fact that the patient is symptomatic, and you'd get an invitation to join the Hosehead Club.
The pulmonologist I saw told me blankly "it's not sleep apnea", and that my symptoms weren't related to a sleep disorder, but instead the sleep problems were caused by something else.
In my humble opinion, the pulmonologist is ignoring the data from the home sleep test and he's crazy to do that.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

Username5102
Posts: 4
Joined: Tue May 05, 2015 1:43 am

Re: Advice on what to do next (likely UARS with no official diag

Post by Username5102 » Tue May 05, 2015 8:54 am

Julie,

I believe I've had my TSH checked, and it was normal. My vitamin D has been low for about 3 years as well, and hasn't wanted to increase despite taking high amounts of it per day. As for iron, I had infusions in September, and within a month or so I was no longer getting out of breath as easily nor having my heartrate elevate as easily. I haven't had my testosterone checked as far as I know but I could ask my doctor to order a some lab work for it, although it would take around a month or two.

Thanks for the reply robysue,

I do think the pulmonologist was ignoring the data. He clipped a portable pulse oximeter to my finger and watched as it jumped back and forth between 97% and 98% and tried telling me that the RERAs the sleep study measured were just tiny 1% changes like that, but I don't believe him. That's not what a RERA is, and measuring 1% changes like that are quite meaningless. The take home device had an EEG placed on the forehead, which can be used for detecting RERAs, and that's likely how the number was determined.

Additionally, when I tried explaining to him that UARS matched all of my symptoms, he just stared at me like I was talking a foreign language. He's never heard of UARS before, so he doesn't know what it is.

User avatar
robysue
Posts: 7520
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Contact:

Re: Advice on what to do next (likely UARS with no official diag

Post by robysue » Tue May 05, 2015 11:24 am

Username5102 wrote: Thanks for the reply robysue,

I do think the pulmonologist was ignoring the data. He clipped a portable pulse oximeter to my finger and watched as it jumped back and forth between 97% and 98% and tried telling me that the RERAs the sleep study measured were just tiny 1% changes like that, but I don't believe him. That's not what a RERA is, and measuring 1% changes like that are quite meaningless. The take home device had an EEG placed on the forehead, which can be used for detecting RERAs, and that's likely how the number was determined.

Additionally, when I tried explaining to him that UARS matched all of my symptoms, he just stared at me like I was talking a foreign language. He's never heard of UARS before, so he doesn't know what it is.
So you know the pulmonologist is not up on his knowledge of sleep disordered breathing. Anyway you can ask for a referral to a different specialist---one who is certified in sleep medicine rather than pulmonology?

I know things are a bit different in Canada, but here in the states, most docs who deal with sleep disordered breathing have a background in any one of the following fields: Neurology, pulmonology, ENT, or (occasionally) psychiatry. But a specialist in any of these areas may not know anything useful about sleep or sleep disordered breathing.

Or perhaps you can try talking with your primary care physician and see if s/he can just prescribe an APAP to do an autotitration trial that will also show whether your symptoms improve while on PAP therapy?

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

tiredandscared
Posts: 333
Joined: Tue Mar 10, 2015 2:47 pm

Re: Advice on what to do next (likely UARS with no official diag

Post by tiredandscared » Tue May 05, 2015 12:26 pm

Find a healthcare provider in your vicinity who specifically deals with UARS.

User avatar
Julie
Posts: 19899
Joined: Tue Feb 28, 2006 12:58 pm

Re: Advice on what to do next (likely UARS with no official diag

Post by Julie » Tue May 05, 2015 12:37 pm

That's not as likely to happen up here as down there depending on where he lives.

User avatar
Pesser
Posts: 547
Joined: Sat Jan 11, 2014 4:41 pm
Location: Nova Scotia Canada

Re: Advice on what to do next (likely UARS with no official diag

Post by Pesser » Tue May 05, 2015 1:48 pm

If you read enough material on this site it should become obvious that in many cases there simply is no answer. We are forever groping in the dark. You can have a sleep test that doesn’t show any problem and still have UARS and OSA. You buy a machine and everybody will tell you to get it data capable. NUTS…….. The simple fact is that if you can’t afford a data capable machine; get what you can and try it. Without data you can still tweak the settings until you finally find you pressure. Oh and if you post your data on this site….you get many hits. And the suggestions will likely be no better than if you tweaked you settings yourself without the MIGHTY DATA. A home test will give you one night’s results; so will a sleep test. The real test is how do you feel after using your $300 machine? I have, at worst UARS and mild OSA. I got no test of any kind……just used the machine. I’m doing better but after a year I’m still left with no enough sleep. This treatment can take a long time!

_________________
MachineMaskHumidifier
Additional Comments: Fear of devil with halo

tan
Posts: 565
Joined: Sat Aug 30, 2014 11:58 am

Re: Advice on what to do next (likely UARS with no official diag

Post by tan » Wed May 06, 2015 1:21 pm

Username5102 wrote: I'm wondering what people here think I should do: accept my friend's grandfather's offer and take a cheap APAP and hope it works, or wait a few more agonizing months for my 2-4 week trial of APAP to try it risk free. Or is there another option (keep in mind that I don't have medical insurance, but do have free healthcare because Canada)?
If healthcare is free, then why don't you find a doctor who knows what UARS is and prescribes APAP for you? I use VPAP (I like EPR=4-5) and it has helped me tremendously. My untreated AHI was 4.95 and RDI was 18. Your pulmonlogist is incompetent.

Username5102
Posts: 4
Joined: Tue May 05, 2015 1:43 am

Re: Advice on what to do next (likely UARS with no official diag

Post by Username5102 » Wed May 06, 2015 8:41 pm

Thanks everyone for your replies

I did a quick search on the internet and only found one clinic here with "UARS" on their website, but the doctor is an oral surgeon. There's more sleep clinics with sleep specialists but none of them mention UARS, just the typical disorders like OSA, RLS and narcolepsy.

I think I'll accept my friend's grandfather's offer and get a cheap APAP and make sure it's data capable, it seems safer than waiting for 2-3 months for a 2 week APAP trial due to having to personalize the settings through trial and error. Even if that machine doesn't get me back up to 100%, being at 50% is still better than being at rock bottom, at least then I'll be able to work to pass the time between appointments rather than wait out the days doing nothing.

In the meantime I'll see if my family physician can prescribe an APAP and see if I can ask for a referral to a different sleep specialist. The pulmonologist I saw claimed to treat sleep disorders, but he seemed to only know about OSA and RLS. Perhaps if I can show them that I've improved a lot on a CPAP machine then they can give me a prescription for one in the future.

I also tried a sinus rinse and nasal decongestant spray yesterday. It made a noticeable difference while awake, but I ended up sleeping 17 hours straight.

User avatar
Pesser
Posts: 547
Joined: Sat Jan 11, 2014 4:41 pm
Location: Nova Scotia Canada

Re: Advice on what to do next (likely UARS with no official diag

Post by Pesser » Thu May 07, 2015 6:42 am

Username5102 wrote:Thanks everyone for your replies

I did a quick search on the internet and only found one clinic here with "UARS" on their website, but the doctor is an oral surgeon. There's more sleep clinics with sleep specialists but none of them mention UARS, just the typical disorders like OSA, RLS and narcolepsy.

I think I'll accept my friend's grandfather's offer and get a cheap APAP and make sure it's data capable, it seems safer than waiting for 2-3 months for a 2 week APAP trial due to having to personalize the settings through trial and error. Even if that machine doesn't get me back up to 100%, being at 50% is still better than being at rock bottom, at least then I'll be able to work to pass the time between appointments rather than wait out the days doing nothing.

In the meantime I'll see if my family physician can prescribe an APAP and see if I can ask for a referral to a different sleep specialist. The pulmonologist I saw claimed to treat sleep disorders, but he seemed to only know about OSA and RLS. Perhaps if I can show them that I've improved a lot on a CPAP machine then they can give me a prescription for one in the future.

I also tried a sinus rinse and nasal decongestant spray yesterday. It made a noticeable difference while awake, but I ended up sleeping 17 hours straight.
Go to secondwindcpap.com. Look at the prices. You can get a very good machine for about $300. Because you are in Canada they don't need a perscription! I've done this. These people are very good, prices are good, product and service are good.

_________________
MachineMaskHumidifier
Additional Comments: Fear of devil with halo

User avatar
Julie
Posts: 19899
Joined: Tue Feb 28, 2006 12:58 pm

Re: Advice on what to do next (likely UARS with no official diag

Post by Julie » Thu May 07, 2015 7:31 am

And go to Reship.com and see what they do... They're a 'mailbox' in U.S. that redirects stuff here... e.g. if you want a machine (or anything else from the US) you could order it sent to the Reship address, then sent here... and it's not expensive.