Experienced folks please help--need opinions

[attagirl]

Okay, I'm ready to chuck my mask and machine. Before I do, I need some opinions on this.

After suffering from fatigue, brain fog etc. etc. for about a year (I think everyone here knows the drill) after my hysterectomy, I went to a psychiatrist who diagnosed adult ADD. He said he would be happy to treat me for it, but he strongly suspected I might also have sleep apnea and made me promise to do a sleep study. (The ADD medication, BTW, really helps--unless I have had little sleep, in which case it just makes me woozy.)

So I had a sleep study done in January. It was analyzed by a pulmonary specialist who said I had "mild" OSA (40ish waking episodes per night, a lot of kicking). We played phone tag for several days until I finally asked to speak with his nurse to get the full results. She said the doctor recommended positional therapy. I felt I'd already been trying that unofficially and it had not helped, so I told her I would prefer to try CPAP. She set it up, I got a machine that records data for a month (sorry I don't know official terminology yet).

I first tried a nasal mask and did not take to it; I had to add a chin strap. When that wasn't working well, after about 3 weeks of this my resp. therapist suggested I try a FF mask. At first this worked well. My record for sleep time with it was 7 hours, but the average was about 3-4 hours. However, I had no intention of giving it up. Then, even though I hadn't changed the fit, it started to feel very tight. Then leaks around the bridge of my nose came out of nowhere. I had to tighten it more and more to where the nosepiece was literally touching my eyelids in order to keep it from leaking, and I couldn't sleep like that. So I tried 2 things: I got a new neck pillow with a very defined edge (love it, with or without CPAP) and double-sided tape, which worked somewhat. However, as I am sure most of you have experienced, after fiddling with it 10 plus times in middle of the night and getting so mad you'll never get to sleep, you make the call at 2 AM that you'd be getting more sleep (albeit poor) without it and chuck it.

I called my resp. therapist again, who recommended I try the Small FF mask. I had been using a Medium. So I tried it last night, and took 30 minutes to get it fitted, wear it while I was awake, etc. to get used to it. It was really too tight around my mouth and I had to tie a scarf across the top because it seemed "heavy" on my jawline. When I finally started the machine, the new mask whistled like the North Wind. There were no leaks--just a very noisy mask. After about 10 minutes of trying very hard to give it a chance and ignore the noise and discomfort, I burst into tears and cried for a half an hour, thinking I just CAN'T do this anymore. I was getting more sleep without the equipment, even if it was poor.

Okay, that's my story. I am a stubborn person, and I'm not asking if I should quit trying. I don't even cry often, but this has kicked my butt. Here is my official question for those far more experienced in OSA than I: in your opinion, just how effective can positional therapy be for mild OSA? I am willing to give it a try, because at this point I have nothing to lose. I've had 2 hours of sleep for 3 nights in a row due to struggling with masks.

I have a dr. appt. tomorrow for follow-up on how my CPAP experience is going. I will listen to his 2 cents, but he doesn't have OSA and those of us on here do. I really need some wise counsel from those who have gone through this.

Thanks for all your help.

[GumbyCT]

If you mentioned which mask you are using, I missed it. You can use the search feature (under the light bulb) to search for 1000's of tips and tricks to use on your mask. For best results, I prefer positional AND CPAP therapy.

Finding the right mask can be quite frustrating but is "the key" to successful therapy. Work with your DME to try on the masks while lying down and at full pressure. If your DME hasn't told you, most vendors will supply a new mask if you have troubles within 30 days. Use this guarantee to find a mask that fits you.

[elader]

Good for you that you are taking control of this and not being a sheep about your medical care. In terms of your mask, what could have changed? You need to adopt a OCD type ritual at night for a while - wash your face, avoid products which can interfere with the seal on the mask, clean the seal on the mask, etc. Also with a FF mask, position is important. If you sleep on your back and your chin relaxes, you might get a leak. Find some crazy pillow situation that works, and stick to it.

At least you have a provider that seems to care about your treatment.

[Julie]

I think your problem is simple - you're overtightening the mask and that in itself can cause leaks because the tightening leaves no flexible place on the mask to compensate for small movements overnight that 'require' mask self adjustment (on another area of the mask). It almost begs for a 'pop-out' area to occur for relief. Whether or not you can understand what I mean, I suggest you try loosening your mask tonight and see how it goes. It's not supposed to be 'that' tight at all.

[SharkBait]

Fill out your equipment profile under the "User Control Panel". It really helps the folks here to help you. Also, click on the "My Wisdom" button and get to reading. Don't even count your research of cpap treatment as "on-line time" because you'll want to do a lot of reading and it does take time and patience.

[bap40]

I am sorry to hear of your frustration with this therepy. It can be difficult. Mask fittings are the hardest part to get right. Many of us have tried quite a few before finding the one that works best. I personally tried 8 before I found the one that works best for me. As stated before, fill out your profile so we know what kind of machine and mask you are using now. Don't give up, it ends up being a very real life saver.

Good luck,
Brooke

[Gerryk]

40 ish events a night if you are sleeping 8 hours would be 5 an hour which I thought was acceptable or considered normal. Am I missing something here or is she getting treatment she doesn't really need that position or something else would help?

[LoQ]

40 ish events a night if you are sleeping 8 hours would be 5 an hour which I thought was acceptable or considered normal. Am I missing something here or is she getting treatment she doesn't really need that position or something else would help?

This is just my opinion, but the 5/hour is arbitrary, and anyone who is not getting good quality sleep because they are having any kind of events needs to fix those, regardless of a number.

[sleepisgood]

I am a CPAP newbie (6 months) and hardly an expert, but I feel for you- you sound absolutely exhausted, and I know that frustrated to the point of tears feeling.

It gets better. It really does. You already have some things going for you that others struggle to get- not one but 2 docs who are helpful, and your DME sounds better than average too. And the best thing you have going for you is your willingness to do what it takes to feel better. You can't buy or teach that.

CPAP takes getting used to. I went through 4 masks, 3 chin straps, and a whole lot of nights when I tore the mask off or woke up fiddling with it. Now I'm back with the first mask I ever tried, have learned how to sleep without the chin strap, and have rock star therapy numbers. Now I'm working on going to bed earlier to feel even better- that's a much better challenge than an AHI of 90.

You'll find what works for you. You said you didn't take to a nasal mask- was it a mask or pillows? I really like my Swift LT now. Hang in there!