New Here, but do I really belong?

[NotSleepingBeauty]

Hello, and thanks to everyone here. It seems like a very informative and supportive place.

I am going to try to make this a short as possible. I need some input.

I have been experiencing fatigue since 2009 at least, it has recently gotten markedly worse. I have fallen asleep at red lights, while I am the driver. And I have fallen asleep at work, not good.

I was tested originally for OSA in 2009. It was determined that I had mild apnea. I went for an oral appliance that seemed to help. Recently, my husband said that I was snoring again, so I had the appliance adjusted and stopped snoring.

The fatigue never really went away though. I have been to a rheumatologist, I have a high ANA marker for inflammation, but no other markers to make a diagnosis. Endocrinologist, Adrenals, and Tyroid are fine. Sugar a bit high, taking Metformin. I am being treated for depression and all the meds either cause sleepiness, weight gain or both. Hooray!

The last time I went to the rheumatologist I was desperate as I fell asleep at my desk for 15 minutes at work. He prescribed Nuvigil which my insurance won't cover because apnea was not ruled out.

I went to the pulmonologist who prescribed two sleep studies. The first was with my oral appliance, the second was a CPAP titration. I thought I had the answer, I was going to get a CPAP and everything was going to be great because I was going to see a great improvement in my energy.

Well, when I went to review the study results with my doctor both studies showed no apnea and my O2 never got below 95%. I cried. I wanted to hear that oh yes, you have OSA and need a CPAP. The doctor suggested that I try the CPAP in place of the oral appliance because my pattern of sleep was better with the CPAP, but then again, it was the second study and I think I was more comfortable with just being there.

I picked up my CPAP yesterday used it last night and I can't say it was a resounding success. I fell asleep fine, but the trouble started when I tried to sleep on my side. I ended up fiddling around with the mask (Res Med Quattro full face) for most of the rest of the night and am feeling awful as a result. I am sure I will get used to it, I will not give up.

But the question is, do I really need it? If the results were pretty much the same between the two solutions, how is CPAP going to make me feel better? Has anyone else been in this situation? Any advice or stories you can share?

I read on another thread someone mention that they don't have any memories of their childhood. I also don't have many childhood memories. This makes me wonder if we are on to something here, my concentration, memory, and energy are so low I would rate myself a 3 out of 10. I am just praying that for some reason this will help.

[n0hardmask]

NotSleepingBeauty
Welcome to the forum for sleep-challenged folks.. sounds like you are one of us. Sounds like you have some rest/sleep impediments.. have you seen an ENT specialist or just the dentist for the oral appliance?
There's many many stories and informative resources if you'll look in the top of the window.. several standing topics for new-to-CPAP folks. Also, if you would, please register, and input your equipment -see link in my signature for Newbies if you need help.
Personally, my sleep study was completely useless. The at-home monitor showed some desats, but since I never slept at the clinic sleep study, I showed negligible AHI nor desats. My GP wrote me the RX for CPAP, and I was fortunate to be given an auto-titrating unit. My pressure is 10.5 even after having nasal surgery to improve my nasal obstruction.
I encourage you to READ as much here as you can, and give plenty of attention to getting the right mask for your face.. that's critical to success. Good Luck and do stick around, you're most welcome here.

[SleepingUgly]

Rushing, so I can't recap my story, but it's here (and click on the link):

viewtopic.php?f=1&t=52012&st=0&sk=t&sd= ... is#p479645

What is your machine set to in terms of pressure? Is it data-capable?

Also, why are you using a full face mask? Can you breathe through your nose? If so, I'd recommend you start with nasal pillows or a nasal interface.

P.S. Just because your O2 was OK doesn't mean you don't have sleep disordered breathing (SDB) that is causing your excessive daytime sleepiness (EDS). Lots of acronyms here. Welcome.

[retrodave15]

@NotSleepingBeauty

I too am somewhat new here as well. My sleep study showed mild sleep apnea, but I never slept at the study and only mildly better at the titration. Luckily I have a good sleep doc and a great GP who both mandated a full data capable machine. I would have got an auto CPAP machine, but we could not get that one approved by my insurance so I had to go with the AutoIQ machine. They titrated me out at 6.0, at my two week followup my do looked at the AHI numbers and I was ranging from 15 - 30 as reported by the machine. Through some drug changes to address som central apnea and pressure changes to 10.5 we now have it down to an AHI of 4, better but not great.

At my sleep study, my AHI was reported as a 6.0; so the sleep studies are not always accurate or tell the whole story. My sleep doc mentioned that the study is one part of the puzzle, other symptoms, the sleep log I kept for a month and my co morbidity of high blood pressure and depression all figured into the diagnosis. My insurance has a pretty liberal policy for CPAP and as long as you have some apnea with at least 2 co-morbidities they can get you on CPAP. At this point our insurance does not cover the oral appliances prescribed by a dentist, only if they are prescribed by a physician (MD or DO). Sometime I wonder if dentists that are getting into the sleep apnea business are just trying to create a new profit center.

A month later I am finally starting to feel better, I am sleeping about 6-7 solid hours a night, and my energy is returning. I was also tested for a low Vitamin D level, and with a result of 16 I am being treated with 50,000 IU of D2 one a week and 2000 IU of D3 daily.
My suggestion is give it time, it takes some time to get used to it and pay back that sleep debt as I feel a bit better each day.

[Perrybucsdad]

Welcome.... if you are using a full face mask (FFM) because you think you are a mouth breather, well, there might be better options. Take a look in my signature for the link to "So you think you're a mouth breather" and see what you think.

I learned a lot from this group and I know you will do the same. If you could provide us with some of your information (Make & model of your machine, mask, etc) and also what your pressure settings are we can help.

John

[Mary Z]

Maybe you don't need CPAP. It's harder than it looks. If you did not use CPAP would you stick with the dental appliance?

[NotSleepingBeauty]

Wow! I can't believe how much help I have already gotten here. I have updated my equipment in my profile so that should help you all a bit.

@n0hardmask I have been to an ENT, but for dizziness issues. I have Meniere's oh joy. They never mentioned anything to me about my anatomy being unusual, but then again I was not there for EDS.

@SleepingUgly Thanks for sharing your story. I am also being fit into the Hypersomnia category. But, the CPAP study showed a better patten of sleep, so you give me hope.

@retrodave15 I paid for my oral appliance myself and it was very expensive. It works. My orthodontist is very passionate about his work and as a result I have a device that is one of about 80 he custom made for each client. I also grind my teeth, so I think I may have gotten some relief in that department as well. Also, I have had Lap-Band surgery and have my vitamin levels checked often. I actually have another blood test scheduled soon. I'll let you know if it turns up anything.

@Perrybucsdad Thanks for the mouthbreathing writeup. You, and everyone else so far are convincing me to try a smaller nose pillow or nasal mask. I wonder if I can call the supply company and tell them that I want to try something different? It can't hurt to ask, right?

@Maryz I am still not used to the dental device. It hurts the inside of my cheek. I tend to take it out in the middle of the night without knowing it. But I have been wearing it for 2 years already.

Again, thanks all. I hope tonight is a better night since the need to wake up for work won't be there.

[archangle]

Welcome, NotSleepingBeauty.

In my opinion, it is simply wrong to start someone on a full face mask unless they're known to be a mouth breather. A nose-only mask is usually better, unless you leak air out of your mouth. Many lazy DMEs start with a full face mask, because they don't want to deal with an exchange.

Don't expect big benefits until you've used the machine for a while. A lucky few do feel better immediately, but many don't, especially those with long term problems.

I suspect you have the wrong machine listed in your profile. Does it say "Philips Respironics?" What does it say next to the display? "REMStar xxxxxxx xxxxxx." What's xxxxxx?

If you do have a good Philips (PRS1) machine, it will tell you a lot of data on each night's sleep, including recording apneas.

What was the AHI on your sleep study? If they didn't give you a copy of your study, you may have to beat them up to get a copy of your study. Be sure to get the full report, not just the summary. AHI is a LOT more meaningful than O2.

Oral appliances are rarely the solution to apnea. I think they get tried far too often because nobody want to be hooked up to a machine, but CPAP is THE gold standard for apenea treatment.

[NotSleepingBeauty]

I did have the wrong machiene listed, I think I fixed it, but will check and reupdate if needed.

[JeffL]

Disclaimer- I am not a doctor, nor do I play one on TV.

That said, if you doctor told you that you don't have apnea, have you been tested for other problems, such as Chronic Fatigue Syndrome, Epstein-Barr Virus, Mononucleosis, Sluggish Thyroid.
There are a bunch of possibilities here: http://www.emedicinehealth.com/fatigue/page2_em.htm

For what it's worth, I have no problem remembering my childhood. I think I remember every miserable moment (and some of the good ones too).

[napstress]

Welcome to the forum, NSB.

Well, when I went to review the study results with my doctor both studies showed no apnea and my O2 never got below 95%. I cried. I wanted to hear that oh yes, you have OSA and need a CPAP.

I can relate to this feeling. My AHI at my sleep study was 0.2 with virtually no oxygen desats. Yet I was diagnosed with mild sleep apnea because my RDI (Repiratory Disturbance Index) was 45 events/hour. This was formerly known as UARS (Upper-Airway Resistance Syndrome). It differs from apnea in that one's throat does not completely close during the event. But because the event resulted in an arousal, it is considered Sleep-Disordered Breathing (SDB), and the treatment for it is also CPAP therapy. Most insurance companies do not recognize UARS, which is why my doctor wrote it up as if I had apnea—so I could get a machine. She did not necessarily lie; she just scored my numbers based on the Alternative Standard, rather than the Recommended Standard. I don't understand the differences in great detail, but I gather that she counted RERAs (Respiratory-Efforting-Related Arousals) as Hypopneas.

I've been struggling for 9 months, not just with the therapy, itself, but in uncovering all the information in the above paragraph. I have felt like an imposter here (though no one has made me feel that way), and have at moments wished I had "real" apnea so I could see real results and have the numbers mean something. It's been a very confusing time for me, and has been much harder to persist with what I am experiencing as a challenging treatment. But I have gone on, systematically removing obstacle after obstacle because I have felt tired my whole life. Even as a child! I persevere because I long for a life in which I have the energy to do all the things I want to do.

If you decide to stay with the full-face mask, you might want to do a search on bed pillows. You can buy contour pillows, buckwheat-hull pillows, or carve your own as some creative members of this forum have done. If you sleep on your side, you can rest your mask in the groove of one of these pillows, which will keep the mask from causing leaks when you smoosh your face into the pillow.

Good luck!

[teknomom]

I think anyone who wants to be here and can get something from the forum is welcome. We few ASV users who have different machines, pressures, etc. aren't typical either, but we "fit in". Understanding the confusing definitions and SDB variations, can be like wandering through a maze! Welcome to this group of wanderers. We help each other find our way through (or under or over or around)!

[NotSleepingBeauty]

Hello everyone. The past few nights with my CPAP have been much better. I am updating my equipment yet again... I am also going to check out some of the other threads that sound pertinent to me. I am also going to check out trying to get a nasal mask.

JeffL - I have been tested for "Fatigue related" problems, but they are diagnosises of elimination. So if CPAP does not work, chronic fatigue is pretty much the only thing left.

Again, thanks everyone for all your advice!

[amyjomartin]

It can take a while to get used to the CPAP. I've been on mine for less than a month. The first week was rough because I wasn't used to having something on my face at night, nor was I used to sleeping on my back (I'm normally a side sleeper, but found that my mask would move around when I slept on my side, so I switched to my back). It's been 22 days and I am noticing a mild difference. My fatigue hasn't completely gone away, but I am noticing it less and less. I am also more comfortable at night now that I'm gradually getting used to back sleeping (creative arrangement of pillows has helped ).
I hope that you will feel more comfortable and feel better once you've given the CPAP some time. I know (as we all do here) how difficult it is to lead a "normal" life if you feel tired all the time.
Good luck!

[Carmen]

I can relate. After horrible insomnia, waking up about every half hour, my sleep study said I didn't have apnea. Fortunately, my doctor suspected airway resistance, did a home study, and set me up with a machine. So far, I've had no trouble using the machine and the main difference in my sleep after three weeks is that I'm sleeping about two hours more a night than I used to. I feel a lot better. Still wake up a lot at night, though--don't know if I'll eventually get over that.