Hi--Having a bad time of it

Hi,

First, I'd like to thank all of you for what you've already posted. I've been lurking here for months, and have absorbed a lot of tips that make what little sleep I do get better. Thanks!

Now comes the introduction and the rant.

I'm a 41 y.o. female, diagnosed with OSA in January. The sleep study also discovered that I have periodic limb movement and my doctor is farily certain that in addition to OSA I'm narcoleptic, but the treatment plan is to focus on the OSA first. I also have severe RLS which is medicated.

Since January, I have been through 7 different masks. I still have yet to sleep even one solid night on CPAP. I average 2-3 hours of sleep per night altogether, because the treatment either prevents me from falling asleep at all or wakes me up every 15-25 min, keeping me from achieving deeper stages of sleep and the relief of decent REM.

I have documented, and my husband has documented, the amount of wakefullness, so for those who would suggest that I'm really getting more sleep than I think I am, that's been considered and ruled out. I've been subsisting on 2-3 hours of sleep per night since January, and I really feel, now, that I'm at the end of my tether. If I take the mask off, of course I go right to sleep, and enjoy an AHI of about 36, which means I wake up feeling sick. So I force myself, every night, to keep the mask on, to try again, and I experience the torment of waking up almost as soon as I drift off, again and again and again and again.

My specs are:
CPAP: Intellipap autoadjust with heat/humidifier
AHI during sleep study: 36 (severe)
Masks: which ones haven't I tried? LOL. Tried nasal pillows Swift fx for her and Optilife--it turns out I have a deviated septum and nasal pillows feel like slow painful asphyxiation
Nasal masks: Petite zest Q, Wisp (usually the one I try nightly because it's most comfortable. I got vestibular migraines (migraine with vertigo) from the pressure of the forehead bar on the zest, and the thing leaked constantly.
Full face: FullLife (leaked, painful, fell apart) Amara view (no seal without tightening to the point of bruising) Quattro FX for her (flexed and ballooned, slid across my face no matter how tight--felt like someone was using a plunger on my face)

Today I shelled out another $109 for a Dreamwear, Respironics' newest gizmo. So that'll be 8 masks in 8 months.

I don't know how many others out there suffer from this but it can't be just me. Why do the cushions on masks not stay still when you breathe? I can feel the seal flexing and bending as I inhale and exhale. Like the mask is doing push-ups on my face. I can't stand it. I hate repetetive noises and sensation, and that constant bloop bloop bloop bloop right on my face makes it nearly impossible to actually get to sleep. Tightening the straps helps sometimes, other times it makes the plunger effect worse, plus it hurts. It seems to me they should use a stiffer grade of plastic. Often times I have to position my hand or a pillow on the mask or right at the join so that the ##@%& mask doesn't move while I'm trying to go to sleep. Then I have to deal with the hiss of the exhalation ports as the airflow hits whatever I'm using to hold the mask still. Sometimes I feel so angry I want to break the equipment, except I've paid so much for everything.

Honestly, I never thought life could be this miserable. I have poured over the internet, looking for tips. I've spent a fortune on masks. I practice immaculate sleep hygeine. I even moved into my own room. I cut out ALL caffeine. I don't do any electronic viewing after 7pm. I don't even read. I spend the last 3 hours of the day preparing for tomorrow and knitting for recreation in moderate light. I've tried chinstraps, nose pads, new pillows, sleeping sitting up and in a recliner, reversing my schedule to sleep during the day, aromatherapy, herbal teas and pills, yoga, massage, transcendental meditation, zen, ear plugs, biofeedback, even cannabis (legal in my state).

Nothing works. NOTHING. I still wake up every 15 to 25 minutes, all night long, until 4:30-4:45 am, when I pass out from exhaustion and emotional overload. I sleep until 6:30am, when I have to get up to start my day.

You might ask where my doctor has been all this time? I moved out of state about 2 weeks after my diagnosis in January. My new healthcare system is a joke. I have filled out 4 records requests for my old sleep doctor so they could get my sleep study and set me up with a sleep doctor and DME here in my new town. My old sleep medicine practice has confirmed that they faxed my records over all 4 times, but no one in the new family medicine practice can find them and they will not set me up with a DME until they get it. The old sleep doctor even faxed one of the requsts herself and called my new provider to make sure she got the information. The new provider said yes, thank you, I will have the DME call the patient immediately. Two weeks later, after no phone call, I called my provider and, wow, how odd, she can't find my records now and needs me to fill out a new release. I even hand carried my own copy over to the office and they lost that, too.

Without a DME, I can't have the data pulled off my CPAP to give to a sleep specialist here, so I'm not going to bother making the appointment and shelling out specialist fees until I can get set up with a DME. I have made an appointment with a new primary care practice (in November) so we'll see if they can manage my information better. I have never before encountered such incompetence in the medical field and I'm glad I didn't have to go to them for something more serious than what I already have. I am going to report them to the healthcare authorities here, because I"m almost sure there's some kind of violation going on.

So in the meantime I've been up all night, feeling terrible, paying out of pocket to try new masks. I've adjusted my pressures up and down within the range prescribed by my sleep study. I've experimented with the flex and inhale/exhale rounding settings. bumped the humidifier up, turned it down, changed the ramp time, changed the ramp pressure...every night is a new experiment in "please God, let this work". Every night is a disappointment. I'm iiving a nightmare.

To me, it seems I have few options left. Once I talk to my new primary care provider, I am going to make sure I get set up with a DME immediately. If I have to call them 10x per day until it's done, that's what I'm going to do. I'm going to ask for a prescription sedative, strong enough to just knock me out, at least temporarily. I can wean myself off it later if necessary. Right now, I feel like if I don't get some decent sleep soon, I am going to have a stroke or heart attack from the stress. I do eat a good diet and force myself to exercise, no matter how tired I am. I have a few narcoleptic episodes during my day, and when I do, I sleep in my recliner without the CPAP. The episodes only last about 20 min. If I had to choose an adjective to describe what it's like pushing myself so hard to get through my day (I'm a housewife with a very heavy domestic workload) I would say "hellish". If you ask me how I feel about my future, I'd say, "pessimistic".

Still, I can't give up. I put that mask on (which I'd really like to take a sledgehammer to) every night and try again. I have plans for dealing with the doctor and DME problems. I have survived bad things happening before--I survived child abuse from infancy until I left home--so I figure if I'm tough enough to have survived 18 years of hell, then this last 8 months is not long by comparison.

It's tough, though. Thank you for reading this, I really just needed to vent today.

Boy, I sure hope things start improving for you. You may be able to get sleep data from your machine with sleepyhead software yourself and take that to see a sleep doctor, no DME intervention required.
Jim

Did I miss where you mentioned your pressure settings?

And can you download (free) SleepyHead software (from 1st Announcement main pg) and let us see what goes on overnight?

You could request that the sleep study be mailed to you. By law, they must send it to you if you request it.....Do you know what pressure your CPAP is set at? What problems are you having with the masks...leaks? Uncomfortable? Mouth breathing? Fit?

So much going on, you need a break!

DME: I am pretty sure you can pick your OWN! Find one that takes your insurance and have your old Doctor fax over your prescription and medical necessity form (if required) directly to them. This is all they need to get you covered and equipment.

I use the Amara View and love it. That said I find it difficult to get it seated correctly. I tend to over tighten the straps on every mask I have tried. All these masks need to "float" on the silicon seal for them to work correctly. Tighten the straps to just get the mask to say in place before you turn on the machine. Turn on the air and pull "slightly" away from you face and let the seal inflate, then let go of the mask. if you change the straps do it very slightly by 1/8 inch at a time. Make sure it is centered and you can also adjust them by pulling up or down on the back of the head gear. The thing that I find difficult with the Amara View is how to place my nose into the mask. There is a slight cup where the tip of the nose goes and the top of this cup has to be over the end of your nose. I also tended to push it too hard up under my nose, which hurt.

Unfortunately every FFM I have tried did indeed do pushups on my face at sometimes. The deeper I breath the more it did.

My biggest hurdle was getting used to all the new feelings and sounds because I did not know which of them was important and not. Just what is a large leak?

Do you have a hose hanger to get the hose up above you and not in the way? $20 on ebay and that was solved for me.

I spent a lot of time just telling myself "that is okay, it is supposed to be like that" to get me to stop focusing on all the new things going on. Before CPAP I used to sleep with a mask and ear plugs, now not much bothers me

Another big questions that I just learned about when you lay down, before you go to sleep do you breathe fine or does it feel like you are having an apnea while awake? I am scheduled to be tested for COPD because of this, riding on top of my apnea. oh joy!

Like Julie, I'm wondering about your machine settings.
If you're using a range of pressures in your Intellipap Auto, the pressure changes may be disturbing your sleep and waking you up. You wouldn't be the first to experience that.


Den

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What exactly did your report say about your limb movements? If you were diagnosed with PLMD, it could be that your limb movements are responsible for some of your grief. Now, the times you wake up with a specific mask issue are clear, but the other wake-ups could be due to limb movements. When I started CPAP and my legs were still jumpy, it seemed at night I was in a constant state of agitation. At its worst, I couldn't tolerate hardly anything touching me and the mask just HAD to come off. Been known to throw it against the wall even. What I found after my legs were calmed down was that the things that used to drive me insane stopped being such an issue. I wasn't in such a heightened state of sensitivity. I hope someone else can give you some tips regarding masks. All I can offer is that maybe a soft mask liner could buffer some of the sensations and even the leaks. I'd urge you to find out if your legs are disturbing your sleep. Maybe your husband can monitor your legs and give you an idea how active they are. Often the person being awakened by limb movements isn't aware because by the time they wake up, the movement has stopped. If you do find your legs are part of your problems, do some reading about PLMD. It's been discussed on here a lot. I would suggest your priorities be #1 Make sure your CPAP treatment is optimized and #2 Address the limb movement question. No matter how well your CPAP treatment works, if your legs disturb your sleep, you still won't feel rested. Good luck going forward.

I'm sorry you are having such a bad time, but we CAN help you tackle these issues. Keep on pursuing the PLMD/RLS, because it sounds like that is going to be crucial to ironing this out.

You deserve a big pat on the back for not giving up after all these difficulties.

Meanwhile...
First, YOU CAN access your data and adjust your settings to try to find settings you can get some benefit from with data to guide you instead of shots in the dark (I'm fairly sure it will work with Intellipaps). There's a free program available here called "Sleepyhead" which will allow you to download all your data and help see what may be happening. Then you can tailor your adjustments to what the graphs show you. You can print your graphs out and take them to your doctor, although a primary care doctor will have NO idea what the data means. And the DME's will be upset that you accessed your own data (they'd rather charge you for the privilege and then not tell you anything about it), so I wouldn't bother to discuss it with them.

Can you tell us what the settings are on your machine (pressure, ramp, exhalation pressure relief, humidifier)?

As for the masks, a couple of things:
1. I agree with a suggestion above to get a mask liner. That may help a lot. I highly recommend Padacheek mask liners. In the meantime (especially since you haven't yet settled on a mask) you can make your own out of old t-shirts. Something between you and the silicone will be more comfortable and may help with leaks.

2. If you have to crank down these masks, they aren't fit correctly. Please see my "Taming the Mirage Quattro" and "Swift FX Fitting Tips" in my blog below. Even if you are not trying those particular masks, it helps explain how air cushion masks work. I never feel the "bellows effect" because the masks aren't too tight on my face. If you are feeling that in masks not really designed specifically to act like a bellows (the Mirage Activa is an example of a mask that is designed to move like a bellows) that tells me it's too tight. My fitting tips may help.

3. You may have tried this already but you may sleep better and be less interrupted if you turn off exhalation pressure relief--since that in/out feeling is bothering you. This depends on your pressure setting and how strong your muscles are. At first, with asthma, I definitely needed the pressure relief on exhalation, but along the way I was able to turn it off. One advantage of doing so is that my machine is measurably quieter now. Worth trying.

4. If your settings are wide open, that could be part of what's waking you--the machine may have to chase your apneas and the extra pressure can disturb sleep. If we can see your data we can help you dial in the pressure in a tighter range to increase your comfort level.

5. Are you still using ramp? It sounds like you've "changed the ramp time, changed the ramp pressure" but have you turned it off completely? For most people, the ramp is nothing short of annoying. If it's set too low it makes you feel like you are suffocating, and the sudden change from low to higher pressure when the ramp period ends could be part of what's waking you.

6. I'm past 5 years with CPAP and I still need white noise to help me sleep. I listen to podcasts on Stitcher all night via one ear bud.

AS for your records, get your own copy of your sleep report and your prescription. Take a photocopy (always keep your copy) to hand deliver to the new sleep doctor and a copy of the prescription to the DME of YOUR choice and MAKE THEM SIGN A RECEIPT for it. Enough game playing!

After my sleep study, I was determined that I would make the treatment work. I used every tool I could find (it sounds like you have too!). If you think the mask is a big problem, have you tried the Sleepweaver Advanced? It's cloth. Once you have it on and not leaking, it's so lightweight that you barely know it's there. It was my favorite for the first couple of years, and believe me, I've tried so many different masks. I turned off the ramp too. Don't give up. You need to breathe.

First, I am so sorry for you. Keep on trying, and trying. I, too, have been trying for 2 years to get the CPAP thing to work. I started out with Wisp and liked it until it made a bruise on my nose, and have probably tried 10 masks in 2 years time, finding one thing or another problem, either leaking, bruising, not sleeping, etc.
You just have to keep trying and don't give up. Yes, try the Dream Wear. I like it very much and have little leakage but for me my nose is stuffy the entire day.
It's always something, but never give up. I know so many people can give you great pointers on here too! They are a wealth of knowledge. I am still feeling my way. Like my DME said, "For some people, it's like a duck in water." Others not as lucky, but don't give up.