Unsure about CPAP

[Ht538]

I just had a follow up from a long awaited sleep study. I was so hopeful for help with chronic daytime fatigue but instead left the dr office despondent and in years. I am a relatively young (40) slender pre menopausal woman who doesn’t snore at all. I don’t drink or smoke and have low blood pressure if anything. The dr basically asked me a handful of short answer questions and rattled off a bunch of numbers and told me I have mild OSA and to make an appt with the receptionist and left. I have been through so many trial and error “treatments” for my fatigue often requiring several months of titrating or acclimation which is short for tolerating side effects almost as bad as the fatigue. I am also a mouth breather and suspect that I will be dealing with a full face mask, all of this a major lifestyle change and I don’t think I can take yet something else that I have to put up with. I wore head gear for braces as a child and ended up with nearly bald spots and constant headaches. Has anyone been diagnosed with no seeming risk factors but found relief from fatigue with CPAP. It just seems like all the effort is unlikely to yield any results and I don’t even know my numbers. Dr wouldn’t even repeat so I could understand.

[Julie]

First thing to do is get your full (not just summarized) results from your doctor and post them here so we can help you interpret them - they're yours by law.

The second thing is to remember you're looking at all through the fog of either apnea or something else that would explain your problems, and it's probably just adding to your tiredness (btw, have you been tested for e.g. thyroid issues, and/or other obvious things that also cause fatigue?).

And remember that if apnea is the problem, you will feel so much better once treated after you have made sure of numbers, etc... with help from experienced and knowledgable people here. Doctors tend to be fairly useless so much of the time as they don't really understand the therapy, only the science (if that) which is why this forum is so important to so many trying to adjust to a new reality. Don't scare yourself off yet worrying about masks, etc... there are many ways to go once diagnosed and again, lots of help. Just come back to this thread please so we can follow things in sequence.

And apnea is now thought to have caused e.g. weight issues, etc., rather than the other way around, plus so much of it is actually due to anatomy (jaw shape/position etc) rather than otherwise.

[palerider]

I am a relatively young (40) slender pre menopausal woman who doesn’t snore at all.

Snoring, being old, being overweight, being menopausal are not actually requirements for having sleep disturbed by breathing problems.

[Miss Emerita]

As Julie says, get your full sleep report and post it here. In the US you have a right to the report. Bug the receptionist. Before you post it, remove identifying information first. There are people here who can help you interpret the results.

Just checking: has your primary care physician given you a full workup for diagnosing your fatigue? I know how hard it is to press on with a subjective complaint, especially when you are wiped all the time, but I want to stress that when you persevere, you can maybe get somewhere.

I’ve seen posts here from both men and women in their 20s and 30s who are otherwise healthy but have OSA. I’m kind of rooting for that to be your problem, because you can treat it successfully and non-invasively with a PAP machine.

I would warmly recommend that when you get that next appointment and discuss using PAP therapy, you ask for a prescription for a ResMed Airsense 10 Autoset for Her machine. It does a great job of following your breathing in a natural-feeling way.

[chunkyfrog]

. . .
. . . ask for a prescription for a ResMed Airsense 10 Autoset for Her machine. It does a great job of following your breathing in a natural-feeling way.

I very strongly agree with this.
Less machine than you need will result in inadequate and less comfortable therapy.
Get ready to dig your heels in if you are given any push-back.
Cpap is life-changing--- for the BETTER.

[Ht538]

Thanks for all the responses. I am goi g to request the report first thing on Monday.
I have been tested what feels like a hundred times for anemia, thyroid, hormone issues. I even tried several awful meds in case depression was an issue (none worked and I’ve never been diagnosed). All requiring titration on and off and miserable side effects. Had a brain MRI to rule out MS, blood tests to rule out autoimmune issues. Gave up coffee, napping and even the little alcohol i did consume. It’s always written off as poor sleep hygiene (not true), busy life, being a single mom of 3, high stress job, etc. generally no trouble falling asleep or staying there, it just isn’t refreshing at all.
Everyone says PAP is no big deal, but If that were true the the discontinuation rate wouldn’t be so high. I’m really trying to be positive but it feels so overwhelming and unfair. Hopefully I’ll post everything Monday so I can start moving in a positive direction. It’s another month before I even go back for my next appointment (at night so I am assuming another study?)...no one has even explained what happens next. Miss Emerita thanks for the suggestion on the machine! All this uncertainty is in itself exhausting!
I am so glad I found this forum, I was really contemplating just writing this all off because it’s been so shattering and seems like so much to deal with. It’s a major lifestyle change and I already have two kids with chronic issues that require daily treatment (T1D and ADD). Oh, and I also have ADD, but dr dismissed my question about any interrelationship. I just don’t want this to be yet another red herring, I just don’t have the mental or emotional energy to keep chasing.

[Julie]

The discontinuation rate is so high because people are not educated properly about using the equipment and are not (so often!) set up with the correct settings, etc.

[Miss Emerita]

It sounds as though your next appointment will be for an overnight "titration." If that's a hoop you have to jump through, well, there we are.

But I think many people here would regard it as a waste of time and money unless you have an unusual kind of apnea. The machine you will get generates a lot of data that you (and the experts here) can review to help you arrive at your ideal settings.

What especially bothers me about these "titrations" is that the experience is often not a discouraging one for the patient. Sleeping in a sleep lab is not easy, and having a mask on is not easy, and having pressures running is also not easy. I think it is MUCH better to get used to everything at your own pace, at home.

So you might ask the powers that be whether you can just take your machine home and get used to the set-up, starting with a comfortable pressure range. The initial goal is not to treat your apnea instantly; it is to help you be one of the people who persevere with apnea treatment.

[Gets off soapbox.]

[lacro]

It's not as major a lifestyle change as you think. It does take some time sorting out the correct pressures, and finding a mask that works for you. That may take a month or more. The everyday fatigue may take a lot longer to correct. In my case, also a mouth breather, I had several immediate positive results that kept me staying with therapy.

My sinuses which have been blocked most of my life are now almost clear due to the constant pressure, and mouth breathing has been dramatically reduced (day and night) which in itself is enough to keep me going.

I have been suffering from Gerd for quite some time and have been on prescribed meds for it. Since starting therapy only 7 weeks ago, my heartburn has completely disappeared where I no longer need the meds.

Previously I woke up with a dry mouth, that's now stopped.

For 30 years I have been getting up for bathroom breaks 4-6 times per night. Now it's 1 time or lately it's none at all

I used to sleep 10-11 hours every night and not feel refreshed upon waking. Now I go to bed at midnight, and wake at 7-8 am feeling much better with only 7-8 hours of sleep.

I can't say CPAP therapy will help you as much as it has me, but you will never know till you try. It really is not a big deal. It only takes a couple weeks for it to become second nature. The benefits do outweigh the minor inconvenience of getting used to therapy.

Good Luck.....

[Ht538]

Exactly when do you get a machine and mask. There was no mention of me getting or anything being ordered. How do you know what mask to get....do they decide for you? I see folks on here talking all the time about getting a well fitting mask, but where do you try them on? It doesn’t seem like there are standard sizes or anything. I have a very narrow/‘delicate’ facial structure (I can shop for glasses in the kids section). So my guess is that for a treatment stereotypically identified with a heavier male I’ll have to try numerous masks/sizes. But how does that work. None of this process seems to make sense and my dr hasn’t explained anything. I know myself and having some sense of what to expect will go a long way to easing my apprehension. Or is this all info I should have expected from the dr Office. If that’s the case, maybe I should be shopping for a different doc!

[Ht538]

Also, I love the idea of getting the equipment and getting familiar on my own BEFORE or in lieu of a titration study...but how would I know what to get or even get it?

[jim22]

Exactly what type of machine you need will be determined by the titration, unless the doctor happens to know now based on the sleep study. I had an at-home sleep study and an APAP machine was ordered. As opposed to a straight CPAP, an APAP will adjust while you sleep to what you need. It depends on your insurance what studies are required before they authorize a machine. If you have a high deductible insurance which you dont expect to meet, you could be better off purchasing your machine on your own, and maybe avoid the study. You are sort of at the mercy of your doctor and insurance. They will help you with the mask at the study as well, as will the provider of your machine when you get it.

Do some window shopping at cpap.com. the machine recommended above is an excellent choice. If it is possible for you to breathe through your nose, i believe the consensus is that a nasal pillow mask is easier to fit. If you have persistant trouble with your mouth opening you may need the full face mask, but it may be more of a challenge to find one that fits well.

Jim

[Ht538]

I am really unsure about how my insurance will work. I am active duty military. I don’t have any copays and sometimes they go all in while others they are a lot more restrictive and go cheap. It sounds like I’ll need to stick with my current civilian doc to keep things moving even though he’s been unpleasant at best.
Who normally helps with trying all the different masks? Do I have to buy them myself if the initial one doesn’t fit and will I keep having to go back to docs office to get new ones? If the latter is the case, I may more seriously consider a different doc. I am worried my narrow small face will make the fit difficult especially since I suspect I’ll end up with a full face given my well tuned mouth breathing skills!

Again, thanks to all for the comments...they have made me feel like I have some support to turn to and calmed my anxiety about this all significantly!

[Julie]

If you're military they should have a list of DME's (durable medical equipment dealers) like Cpap.com (the hosts of this forum) who are covered by their insurance - but if I have it wrong, sorry, I'm Canadian. If you try on full face masks do it lying down because your facial structure changes then and it makes a difference to fit. You just try on various masks til you find one that feels relatively ok... and you can always change to others. Whoever fits you should have some idea by looking at you which masks will be better to at least try on, vs others, and they come in diff. sizes too. Relax a bit - we've all been 'there' and it can take a little while to get it all sorted out, but some find it easy from the start.

[Okie bipap]

Your doctor should send your script to a DME that will accept Tricare. This is normally not a problem close to an active duty military base. You will need to deal with the DME when selecting a mask and the machine. Your best bet is the ResMed Air Sense 10 auto for her or the regular Air Sense 10 auto. You can often times find complete masks available on eBay. They may be listed as a mask frame, but if you read the description and look closely at the picture, it is a complete mask. I have purchased several masks there as well as mask components.