Frustrated user

[Debbi Lynn]

Since menopause, I've been unable to stay asleep at night. At my last yearly physical my doctor recommended seeing a sleep specialist. Since even with Ambien I was unable to stay asleep for more than 2 hours, I agreed. After the overnight study I was told I had a very mild case of sleep apnea. As much as I hated the idea of the mask, I agreed to give it a try. My uncle has been using one for 6 years and swears by it. I fully expected to be feeling better by now and be used to it. It's been 3 months. During that time I have had 2 nights where I may have been able to tolerate the mask for 6-7 hours. My symptoms are still the same as before. I fall asleep no problem (still only with the help of Ambien), wake up because my cheeks are blowing up like I'm a fish and then cannot get to sleep. I've always been a mouth breather but have gotten better keeping my mouth shut but only with the help of Zyrtec D. I take one in the morning otherwise I will not sleep at all at night. I have a deviated septum and while I've been better at breathing in through the nose, trying to breath out without the zyrtec is impossible and I feel like I'm suffocating.

I just want to give up on this whole thing yet I don't want to resign myself to a lifetime with interrupted sleep. The therapist sees me every 2 weeks and refuses to adjust the pressure until I'm sleeping through the night for 8 hours. All he tells me to do is to keep adjusting the ramp. The mask itself does not bother me but when I'm lying there awake and my cheeks keep blowing up I finally give up and take it off. I have had several nights where I try to tough it out like he says but I don't function at all then. Since I am supposed to be a motivational speaker, I need to have sleep! I have had one followup visit to the actual doctor. I expressed my concern with taking Ambien nightly instead of a couple times a week and now Zyrtec as well and he put me on Gabapentin which is an antiseisure medication that has been shown to help post menopausal women. He wants me to continue with that AND the Cpap. It's been a week and while I don't wake up as groggy in the morning, I'm still waking up frequently during the night. PLUS I'm taking medications which is something I'm not comfortable with.

You all seem so well acquanted with all the techical stuff and I really don't know much about any of this at all. I just feel that neither of these people are listening to me and I want to give it all up - yet I don't! I guess I need help if you can possibly help. Thank you if you can.

Debbi

[pianomagoo]

Since menopause, I've been unable to stay asleep at night. At my last yearly physical my doctor recommended seeing a sleep specialist. Since even with Ambien I was unable to stay asleep for more than 2 hours, I agreed. After the overnight study I was told I had a very mild case of sleep apnea. As much as I hated the idea of the mask, I agreed to give it a try. My uncle has been using one for 6 years and swears by it. I fully expected to be feeling better by now and be used to it. It's been 3 months. During that time I have had 2 nights where I may have been able to tolerate the mask for 6-7 hours. My symptoms are still the same as before. I fall asleep no problem (still only with the help of Ambien), wake up because my cheeks are blowing up like I'm a fish and then cannot get to sleep. I've always been a mouth breather but have gotten better keeping my mouth shut but only with the help of Zyrtec D. I take one in the morning otherwise I will not sleep at all at night. I have a deviated septum and while I've been better at breathing in through the nose, trying to breath out without the zyrtec is impossible and I feel like I'm suffocating.

I just want to give up on this whole thing yet I don't want to resign myself to a lifetime with interrupted sleep. The therapist sees me every 2 weeks and refuses to adjust the pressure until I'm sleeping through the night for 8 hours. All he tells me to do is to keep adjusting the ramp. The mask itself does not bother me but when I'm lying there awake and my cheeks keep blowing up I finally give up and take it off. I have had several nights where I try to tough it out like he says but I don't function at all then. Since I am supposed to be a motivational speaker, I need to have sleep! I have had one followup visit to the actual doctor. I expressed my concern with taking Ambien nightly instead of a couple times a week and now Zyrtec as well and he put me on Gabapentin which is an antiseisure medication that has been shown to help post menopausal women. He wants me to continue with that AND the Cpap. It's been a week and while I don't wake up as groggy in the morning, I'm still waking up frequently during the night. PLUS I'm taking medications which is something I'm not comfortable with.

You all seem so well acquanted with all the techical stuff and I really don't know much about any of this at all. I just feel that neither of these people are listening to me and I want to give it all up - yet I don't! I guess I need help if you can possibly help. Thank you if you can.

Debbi

Hi Debbi,

I have also been on cpap getting close to 4 months and don't see any positive change but feel worse as now I also wake with nausea some nights from swollowing air. There have been many times I have felt like giving up out of frustration and still occasionally feel that way. Then I think about what damage is being done by not using therapy and decide to tough it out one night at a time and hope things will eventually start showing improvement. I also have some other issues which I brought up with my family doctor he set up appointment with the sleep doctor to discuss these things. That will happen in a couple weeks.

I am surprised that a therapist visits you every two weeks (for the whole three months?) Is this an RT with sleep clinic or dme or a therapist you had before the sleep study? I'v never heard of a therapist from sleep study or dme visit a patient every two weeks for months. Maybe if the person has another health issue that needs to be closely monitored, they do.

What pressure are you on? Have you been on the same pressure all three months and does that pressure feel right to you? Do you know what your results were at the sleep lab? You are allowed to have copies of
the sleep studies, although you may have to pay 10.00 for each one.

What type flow ventilator do you have and is it set at one straight pressure? Do you have EPR or flex on it?

Most folks on here get the software for the machine on cpap.com so that we can see what is happening and if our apneas and hypopneas are coming down or not. The goal is to get them down and that may or may not reguire pressure change. It is best to work with your doctor (even family doctor in letting him know what you are doing and why). See your family doctor regarding getting an appointment with the sleep doctor, otherwise you have to wait a full year to get an appointment with him.

I feel like I am awake most of the night every night and feel like I could fall into a coma during the day if I were to stop and sit down in a comfortable chair. I have no problem falling off to sleep. I do have a problem staying asleep because of various reasons, mask leak, nausea, stuffed up nose, itch on nose or feel like not getting enough air.

Your therapist tells you to keep adjusting the ramp? Why? Are you at a very high pressure that you need a ramp to bring you slowly to it? If your pressure is not high the ramp can make things more frustrating as you may feel like your suffocating. I tried it one night for 5 minutes and will never use it again. I was at a low pressure of 7 at that time so really didn't need it.

The folks on here will give you good advice and can give you more than I can. There is one thing you need to keep in mind and that is that all your organs need oxygen to stay healthy. When you're having apneas you are losing oxygen that should be going to those organs so even though it's frustrating its much better in the longterm for you, to continue cpap therapy. If you pressure is a high one you might do better with a different machine, I would discuss this with you family doctor if you can't get appt with sleep doctor.

Keep coming to the forum and you will get encouragement and support here. No one understand like others who experience the same type of issues.

Anne

[danw61]

Debbi, you came to the right place. The people here are really great about helping others. But a little more information would help. Can you tell us the exact make & model of your machine. The make & model of your mask. The pressure you use. what your ramp settings are. Any other settings like pressure relief. Also, if you have any info from your sleep study, that might be helpful. Hang in there, and Welcome!

Dan

[Snoredog]

since I'm a guy and we don't experience that menopause stuff unless you want to count withdrawal from our favorite brew, no many guys go through manopause.

But I do know for this therapy to work you need to breathe through your nose, cause until you can you will struggle with this therapy every night.

My suggestions:
1. Visit a ENT for a nasal exam, rule out any anatomical dysfunction deviated septum, if you have that, you can NOT use a nasal prong/pillow style mask, any pressure on the end of your nose will close up the nasal valve.
2. Use a Saline Rhino rinse with a neti-pot or Neilmed Rhino wash kit, sold in drug stores. Use that every night before bed. Avoid any use of OTC nasal sprays other than Ocean saline or Simply Saline aerosol, these only contain saline or salt.
3. Use caution taking too much Zyretec D, that stuff can dry you out and lead to sinus problems and headaches, same for Claritin D, you only need a decongestant when you have that thick clear mucosa in the back of your throat. Use the non-"D" version for other times. Use of the saline rhino rinse several times a week will reduce the congestion.
4. Elevate your bed by 3-1/2", use bricks, blocks, 4x4's, that will reduce the head edema at night, help with GERD and just be better for overall sleep.
5. Make sure you go through programming and your machine is set up correctly, if in CPAP mode set up the Ramp feature with a lower pressure and USE it.
6. Learn how to access the data feature on your machine if so equipped, keep an eye on AHI and leak info.

[don33taw]

Hi Deb, I also have a deviated septum from a motorcycle accident in 1980, I have had it repaired twice and still had breathing issues. now I am on a cpap machine. I spent years on Claratin D since my breathing is always tough and felt great. I have since took myself off it. (yes you have to take it in the morning) My wife has trouble sleeping and she started taking Melatonin which you can buy anywhere and loves it. She does not take it every night but when she needs 8 hours it works. Anyway I do find that if my nose is plugged even a little I have a hard time with the mask on so I will resort to Mucinex spray which is suppose to be non addicting (DON'T YELL AT ME EVERYONE) but at least I could use the mask. At first when I did the sleep study I came home and felt great no yawning nothing, as time went on I thought that nothing was changing ( and I would average over 500 apneas episodes a night) But then I noticed that at around 3 PM I would still feel great, before the machine I would be ready for bed at that time.
So in closing I would say try to get the staying asleep under control then maybe try another type of mask. Keep us posted. Don

[Debbi Lynn]

Thanks so much for all your responses and suggestions. I wish I could answer some of your questions but unfortunately, I have no idea how to answer some of them. I can tell you from the sleep study that I was told I have very mild apnea. I stopped breathing 19 times during the night - 4 times for almost a full minute. (I find that impossible to believe since I can't hold my breath beyond 30 seconds awake!) As I've been reading these boards, i see that some any people definitely have much worse symptoms than me - especially when I see 500 apnea episodes! OMG - 19 is nothing in comparison and I thought that was alot!!! When I went back the second time to sleep with the mask the technician told me he had seen alot worse and that if I didn't feel like the mask was helping, that I should not allow myself to be pressured into using one. I had the feeling he wanted to say more, but had already said more than he felt he should have. The funny thing is, last night was probably one of the best nights I have had with the mask - I got 7 1/2 hours with it on and only recall waking up twice for short periods of time. I felt terrific when I got up today!

Anyway, the type of mask I am using is a ResMed S8. I've never been instructed in how to adjust anything on it and was told the only thing I was to do with it was turn it on, off and hit the ramp button if I was awake more than 5-10 minutes. Other than that, the respiratory therapist said he will give me another type of machine that will measure how well I'm sleeping and that will determine whether to adjust my pressure or not. Until then, he refuses to adjust it. He will not even consider giving me this other machine until I sleep for 8 hours on a regular basis!! Reading theses posts has definitely been enlightening and I will be asking more questions at my next appointment on Thursday. I feel totally ignorant. I'm afraid I do not know what alot of the abbreviations are that I see on these boards. I'm assuming some of that some of them have to do with insurance. My insurance pays for everything 100%. I had no idea that these machines cost so much!! I also didn't realize there were different types. So, once again, thanks for your input. I feel like a total dummy on all of this and the boards have begun to educate me. Any other tips of what I should be asking are greatly appreciated.

[Debbi Lynn]

Also I see that many of you know how to adjust your own settings and understand how and what the results mean. Where and how did you get the info on how to go about setting your settings as well as understanding what all the graphs mean? Again, I want to know this stuff, just don't know where to go for the info.

[jules]

First what is your machine and what is your mask? You said S8 for the mask above - that is a machine.

If you look on the headgear many times the model or the brand name is specified. If you can start with the brand name, you can search and find the mask with some help.

Can you describe it if you can't find the model? Does your mask cover both your nose and your mouth? Do you have little nasal pillows that rest against your nose? What color is the headgear?

For the machine, you need to check the label on the top and see.

Losing air from mouth breathing with a nasal mask is a common problem.

[JeffH]

Get your nose fixed. It will make all the difference in the world. With a deviated septum, I'm not suprised you are "blowfishing". That means you are mouth breathing. You'll telling my story there. Got the nose fixed and it is one of the best things I've ever done for myself. Hurry before you get more discouraged. It doesn't have to be bad at all.

Good luck

JeffH

[don33taw]

Jeff I'm glad getting your nose fixed worked for you, I had mine done twice and I could still not sleep on my back without bad post nasal drip in the morning. Now Deb, my mouth was always open and I would wake up chocking! Since I became a "hose head" I can sleep on my back though I don't like to and my mouth is always closed without any help from like a strap around my chin or anything. I don't know about anyone else but with a nasal mask (not a full face) if you open your mouth a rush of air comes out and you can't even talk. I do not have any software monitoring me at night, I was able to tell by how I felt the next day and the fact that my blood pressure went down after some time. I would not rush into a surgery just yet. Keep us posted we always try to help. Don
PS I learned how to adjust my machine on this board.

[Lee2263]

Thanks so much for all your responses and suggestions. I wish I could answer some of your questions but unfortunately, I have no idea how to answer some of them. I can tell you from the sleep study that I was told I have very mild apnea. I stopped breathing 19 times during the night - 4 times for almost a full minute. (I find that impossible to believe since I can't hold my breath beyond 30 seconds awake!)

Until then, he refuses to adjust it. He will not even consider giving me this other machine until I sleep for 8 hours on a regular basis!! Reading theses posts has definitely been enlightening and I will be asking more questions at my next appointment on Thursday.

I'm assuming some of that some of them have to do with insurance. My insurance pays for everything 100%. Any other tips of what I should be asking are greatly appreciated.

First off, I thought only your Doctor could change your script when going through an insurance company? I am doing it this way as well. I started at 5 cm of pressure, and woke up one night hyperventilating while wearing the mask. I use a full nose and mouth mask because I wear a mouth guard. Talk to your doctor my dear, the therapist sounds like he's is just scamming the Insurance company for visits and charging them for everything he can.

I don't know much about the techy stuff like these other guys do, but you say you can't hold your breath for even 30 seconds?!?!?! Do you mouth breath otherwise because of the congestion in your sinuses? Try the Mucinex that is over the counter, generic is all right too. I take one of these every evening, about 400 mg, and another one or two during the day to help me breath through my nose.

The other thing about this breathing issue, is the possibility you have what's called, Chronic Hyperventilation, or Overbreathing. This is not the panic-type, freaking you out kind of thing that makes you think you're dying sort of thing. It is a condition that can come from various activities, working out too hard, pain, and stress, among other things. I developed mine from pain, stress and a MVA. Figure out where you breath from, the upper chest around the clavicals, or the ribs and diaphragm. If it's the upper chest with very little involvement of the other areas, you may be screwing up the CO2/O2 balance of your system. Perhaps when you see your real doctor, talk to him about this after you've looked these few things up. See how much it pertains to you. Taking something like a Beta Blocker, like Inderal, will help with stress and won't interfere with your daily routine or sleeping. Actually should help you sleep. If you're looking for a place to sleep during the day, Ritalin is excellent for this, (get the generic) and should help with regulating your sleep cycle through the brainstem. I take this and it helps me stay awake. I have other problems, metabolic, and a messed up Sympathetic Nervous System, and a neuromuscular issue, so my pain doctor and I are slowly figuring what works well.

Keep in mind I don't know what else is going on with your health, but the above are just some things to look at and check out.
Lee

[Panhandler]

Debbi,

I'm sorry to hear about your frustration, but we've all been there to one degree or another. It can take weeks or months to get all the bugs worked out, and then weeks or months more to 'catch up' on all the lost sleep.

It sounds like you're using a nasal mask of some sort, i.e. one that covers the nose and not the mouth, is that correct? The mask or interface is one of the most critical factors of successful adoption, simply because we're all different, so what works best for most of your therapist's patients may not work for you.

I've always had trouble moving enough air through my nose alone, so I've been a mouth-breather since childhood. I started off with a full-face mask, with some success, but I had to keep the humidifier up full, and it was hot and sweaty, so I was really dreading summer. Finally, it dawned on me if I put the pressurized air into my nostrils directly, it might keep my nasal passages open like it does my windpipe, so I found the Fisher Paykel Infinity, a nasal prong type of interface. Apparently it's not very popular, as FP has discontinued it, but it worked well for me, allowing me to move enough air through my nose. I can turn down the humidifier to a comfortable level, and breathing filtered air all night has reduced my allergy problems somewhat.

The point of the story is to encourage you to get involved with your therapy. It's 'nice' that the therapist visits you (most of us never see or hear from them once the bill is paid) but they don't know everything. Haunt the online stores and learn about the alternative masks. Hang out here and learn from other users, realizing that what works for one will not work for all. This is an amazingly supportive and knowledgeable group.

It would be very helpful to know what equipment you're using. The easiest way to fill us in is to edit your profile, so that the equipment is listed in your signature on every post. If you can't figure out what mask you've got, you should be able to find it on your paperwork from the DME, or browse through CPAP.COM's listings until you find a picture that looks familiar.

[Blue Snuffle nose]

Hello there.....

I just noticed you having trouble breathing thru your nose so I read from your post. I used have a nose which was nearly entirely blocked up all year round due enlarged tubinates [air heater for nose, it warms air before it goes into the lungs] When I was on cpap like yourself it was nearly impossible to breath and I felt my ears and eyes were gonna pop out!

Have consider getting your sleep dr. getting in to a ENT Dr ? They may find what's blocking you up and they may able to fix your breathing a it may make using the cpap more pleasent, without feeling your eyes and eardrums are gonna pop out!


I saw one Ear,Nose and Throat Dr and he saw all my nose was nearly entirely blocked off due to enlarged tubinates. Then I went for nose surgery and they shaved the excess off, after for 1st time ever in my life I was able breath thru my nose without suffocating after recovering!!! It was easier to use cpap after have your snoz [nose] fixed! Although I have lost my sense of smell.....that's small price to pay to breath easier thru my nose!