Advice on what to do next (likely UARS with no official diagnosis, waiting for CPAP)

[Username5102]

(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.

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 {Link removed} as well as here.

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[DeepBreathing]

G'day 5102, welcome to Apnea Board.

Please note that we don't allow links to DME sites, as explained in our rules. The forum you linked to is part of a DME site.

I don't know what options may be available to you in Canada, but in your position, I'd probably accept the offer of a cheap APAP. This is on the basis that it can't do much harm, and might do you some good. A good APAP like a Resmed Autoset or the equivalent Respironics machine can certainly aid your diagnosis if your problem is sleep disordered breathing. I believe the Respironics can identify and record RERAs. As far as I am aware, the only Resmed APAP which can do this is the Airsense "Autoset for Her", which is new to the market. However both will identify, record and treat apneas and hypopneas. You will need compatible software for this purpose - I recommend SleepyHead which gives excellent reports. See te link at the top of the screen.

If you do go for the machine, you will also need a suitable mask - this is often the hardest part of PAP therapy. If the mask leaks or is uncomfortable the data will be suspect and you won't get a good sleep. be cause of the number of variables in the size and shape of our faces, there is no simple recommendation I can make - you need to try it out for yourself.

Hope this is helpful - good luck!

[Mark Douglas]

Username5102 what DeepBreathing said!

Let me add I have been in your state for a long time and recently just went out and bought my own machine.
I think in your case based upon my experience the hardest thing is to Just Doing Something. I rode the sit-n-spin for nearly a month my brain fog made it nearly impossible to take action.
I have had my machine for all of 4 days and the results have been nothing short of amazing. So I absolutely support the idea if you can get a machine do it and try it.
You MUST be your own patient advocate and get your needs met. If not you who else?

[retired_guy]

Yes. I believe a cpap machine could definately help you. Even with an AHI of "only" 8 your sleep can be severely compromised. Primarily because of the RERA events that keep you from getting that quality sleep. As you age, your RERA would probably translate more and more to measurable AHI.

The symptoms you describe can in very many cases be directly attributable to apnea.

So scoring a machine, with software to monitor the results, and a modest set of pressures to begin with would seem to me an appropriate thing for you to do. Just pay attention to WHICH machine. If you are going to self-treat and self-monitor your progress, you absolutely need a machine that will give you the data to do that. So whichever brand, it needs to be an auto-titrating machine.

While you wait, take some action on your sleep now. Avoid sleeping on your back. If you have a comfy chair, sleep in it. If not, raise the head of your bed somewhat. Not just your pillow, but your whole upper body.

Good luck and keep us posted.

[trish6hundred]

Hi Username5102,
WELCOME! to the forum.!
I would get the Cheap APAP machine, check out this link: http://www.apneaboard.com/wiki/index.php...ne_Choices .
This will give you an idea of which machines to buy or which ones to avoid.
The next thing to think about is that, you will need a mask and here's where the tricky part comes in as this is the most difficult part of this therapy, but I get the feeling you are up for it, this ttakes some degree of patience.
Hang in there for more suggestions and much success to you as you start your CPAP journey.