Going through a hard time...

[banarabbyt]

Hi everyone- I'm new and here cuz I'm desperate for some help. I'll try and be detailed as I can.

In February of 2008 I was diagnosed with sleep anpea (mild). I got a CPAP and nasal pillows and my pressure was set to 8 cm H2O. I use the nasal pillows and until 3-5 months ago was totally fine with them.

Late last year I decided I was tired of being fat- yes I'm overweight and I have PCOS. So I started changing my eating patterns and so far have lost 20 lbs. In the meantime my sleep has been TERRIBLE. I bought a gowearfit and the device actually monitors sleep and confirmed that I wasn't sleeping well (which I had already suspected). I mean it's showing me wake up over and over all night- and that my sleep efficiency is 75-80%.

Speaking with my husband he says it sounds like my mask is leaking at night, I get a new mask TWO times, problem is still occuring. I do not drink soda or caffeine or alcohol. I don't have any other medical conditions like thyroid,I'm not depressed, I don't have anxiety issues, nothing. In fact recently going to a doctor since losing the weight I have all my numbers are looking great (BP, blood sugars, cholesterol, and so on). I also tell the doctor that my mask has been leaking and I'm waking up with dry mouth cuz my mouth is now opening at night. I read around a lot online and think that even though the pressure is only at 8, it's too high now. My ultimate goal is to NOT need this machine anymore- but fighting all this fatigue lately my weight loss has slowed dramatically (I still have 60 lbs to go so it's not like I'm almost at my goal). The past two weeks I have lost nothing and actually gained this week.

I've even tried tightening my mask to the point I have marks AND my nose hurts- nope... Not working... I know the mask isn't supposed to be THAT tight anyways...

I speak to my doctor and she sends me a referral and I get an "efficacy study" done. The study shows NOTHING. I get a stupid generic typed up paper saying that I shouldn't drink alcohol or caffeine before bed (UM I FILLED OUT A QUESTIONAIRE SAYING I DO NOT DRINK CAFFEINE OR ALCOHOL) and that I should sleep on my stomach/side (WHICH I DO). I'm basically referred to take medication (which I already do!).

I'm so frustrated at this point- and of course I have called my primary and the sleep clinic and they haven't returned my calls. I am literally about to stop using my machine cuz it's not helping anyways. My husband says that the one night I didn't use it I didn't make a peep. Speaking to a friend who has sleep apnea she said that I should have had a baseline study done, not an efficacy, since the efficacy won't show that the pressure needs to be lowered.

Any tips or advice would help. I'm hoping another 15 lbs and I won't need this thing ever again!

[DreamDiver]

Any tips or advice would help. I'm hoping another 15 lbs and I won't need this thing ever again!

banarabbyt,
Welcome.

You've been through a lot. Don't discount that. Like many of us here, you have elected to take your health into your own hands. That's the first step. Way to go. There will be a number of people after me who will all offer solid tidbits of advice, if you'll welcome it. Please be sure to fill out your machine and mask type in the user control panel so we can refer to those as we try to help without your having to list them each time.

Meanwhile, the first suggestion is to look at your mask and find out why it's leaking. A leaky mask means you're not getting therapy, and it's usually the first reason why things go awry. If you've lost weight, you may need a new mask or a smaller size for your current mask type. Depending on the machine you own, you may be able to track large leaks. I would start there. There are many posts on large leaks, as well as information in the CPAP Wiki. (The yellow lightbulb at the top of the forum.)

I hope this small bit helps. I know others with more knowledge will come along with encouragement and more suggestions.

Good luck.

[banarabbyt]

Thank you for the response- I just added the information. I use a Resmed S8 Compact and my mask is the Mirage Swift II if anyone doesn't want to look it up.

I use the small nasal pillows btw.

I honestly have no idea why it's leaking, I've asked my husband and he says he just nudges me and it stops... I don't want to tape my mouth down with some chin strap cuz if the pressure really is too high I wouldn't want to force my body to take it all in. I haven't had dry mouth issues lately...

I started reading up about lisoprinil (I take this for high blood pressure) and I'm going to start taking it in the morning instead of the evening- I read somewhere this can affect your sleep- but it doesn't explain the leaking. The other thing is my husband says the leaking doesn't start till around 3 am... I'm usually in bed and asleep around 10:30 pm. Is leaking 5-6 hours later normal?

[The Dreamer]

Hi Banarabbyt

You said, Speaking with my husband he says it sounds like my mask is leaking at night. after reading your post it sounds to me like you are mouth breathing. The fact that your mouth is dry is a very good sign that you are.

[banarabbyt]

I am sure I have done it on and off. But I read somewhere about using your tongue and placing it in a certain way to stop the mouth breathing and for sure haven't had dry mouth for at least the past week.

I'm really surprised that all the sleep data company did was send my results and then not follow up. I mean surely they could tell if I had leaks or was mouth breathing and would have called me or something?! Suggested a full face mask instead of pillows?

Should I ask for a baseline study? Or should I ask for a full face mask? I honestly FEEL the pressure is too high and have ripped it off a few times in the past few weeks (I'm trying to remember all I can). I'm worried that asking for a full mask will not help and only force my body to deal with more pressure than necessary. But then again at the same time I am tired of being tired... *sigh*

I'm sure you can tell how frustrated I am.

[Jersey Girl]

I have a Swift FX and seem to leak around 3 am. I notice it immediately and fix my mask. The next night I tightened it up just a smidge. I also got a Regenesis buckwheat hull cpap pillow - it allows me to make the left side of my pillow a bit flatter, giving more space for my exhale port and nasal cushion. This has helped me tremendously. I think it almost reminds me of the bean bag chair we had when we were kids - along that kind of concept in that you can shape your pillow as you like it. It doesn't have that "bounce back" that most of my other pillows have and so I seem to get less leaks. My leaks usually run 0.00 to 0.02.

Do you think that you might be mouth breathing? Can you ask your husband to check and see if your mouth is open during the night? If so, you might need to consider a chin strap or taping, or a different type of mask.

Best regards,

Jersey Girl

[banarabbyt]

Thank you for the tip- I'm looking into a pillow. I notice that when I was mouth breathing I tended to do it on my back. Now that I sleep on my side I think it's pushing against the mask.

I'm going to check into some cpap contour pillow and see if that helps- but any other suggestions are still welcome

I mean say I lose another 15 lbs, how does an efficacy study SHOW that I don't need a cpap when my understanding of an efficacy is it shows if you still have apneas while sleeping or not. Obviously if the pressure is too high and I don't need a cpap I won't have anymore apneas. I feel like my cries of "the pressure is too high" are being ignored.

At this point my plan of action is to check into and purchase a special pillow, monitor if I still experience dry mouth, speak to my doctor and the sleep data company, and schedule a basline study when I lose 15 more lbs.

[preemiern]

I too believe you are probably opening your mouth at night. Yes, you can position your tongue against the roof of your mouth to stop the leaking, but once you are in a good sleep, the mouth falls open because you are relaxed. You could try a full face mask, but they also come with their own set of problems. You can try a chin strap to help hold your chin up and help keep your tongue in that good position all night. You could also try taping your mouth closed. It isn't a comfortable thought at first, but it does work well. These are of course all only suggestions, and you have to do what will work best for you.
Does your cpap machine give you any feedback as to the number of events you have had during the night? Or to your leak rate...I can't remember for sure, but I am thinking the S8 compact does not.
Are you using a heated humidifier with your machine? That too will help with the mouth dryness.
Congratulations on losing 20 pounds...I know it isn't easy, but you can do it!!! And your body and your health will thank you for it!!! I am going to venture out on a limb though, and say that I doubt that a 20 pound loss will lower your pressure needs. I wouldn't go too much lower than a pressure of 8 as that is already pretty low, without a study of some sort to help determine your needs. I am wondering if it is possible for you to rent an auto titrating machine for a month and have your DME print out the reports from that so we can take a look at them and see what exactly is happening in your sleep. Or if you can get an apap machine to try for a month with data capabilities, you could use it for a few nights, and send the card to somebody here at the forum to download your data and get a better picture of what is happening at night.
When I tape, I use Johnson & Johnson cloth tape...like the sports tape for coaches, and I roll my lips inward, like when you put on lipstick, then I place the tape over. I use a second piece of tape a little lower and kind of pull it upwards so as to pull my lower lip up a bit, then I let my lips unroll from being rolled inward. I would suggest giving that a try for a night and see how you feel the next day.
Good luck, and please post if you have more questions!!
Welcome to the board!!!

[banarabbyt]

Thank you your post helps so much (as well as everyone else).

I'm looking into the chin strap tape stuff- but it kind of freaks me out for some reason. Maybe it's cuz I work in forensics- I don't know lol.

I never thought about a humidifier- I guess I can ask for one but I've never needed it in the past few years.

I only estimate for myself I need to lose about 90 lbs at the most. I didn't have sleep apnea until I hit 200+ lbs and at my heaviest was 225. I'm currently 205. When I had my sleep test I was at 195 so I'm guessing going below that number would be best. I think for being 5'3" 135 is a good weight (I am pretty athletic so I just don't see myself getting below 130- even in high school when I was a swimmer I was 150 and in great shape).

It's funny because I was told even 10 lbs makes a difference and I've lost double what the sleep data company told me... I'm really just seriously annoyed now lol. I'm like with the lack of communication from them I feel like they don't really want to help- they just want to kick me aside and move on to the next person... ANd no my machine does NOTHING in terms of data it seems. I can't even change the pressure if I wanted to- the only adjustment I can make is up.

I'm looking at pillows and think I will order one for now.

[banarabbyt]

I ordered a pillow and tomorrow will be calling back and asking about the humidifier. Thanks for giving me some hope! I wish someone had told me about the pillow before...

[jweeks]

Hi,

I think you need to find a new sleep doctor, one that is board certified, and schedule another sleep study. Preferably at a hospital or a major cardiac center. They need to watch you use the machine and monitor you in real time.

You seem to be focused on weight being the problem. In reality, weight is far less correlated to sleep disorders than genetics and age. While you seem to think that increased weight caused the issue, it could be that it was the fact that you were getting a little older. It might be that losing weight is not going to allow you to get off of the machine.

A pressure of 8 is very low. In fact, some folks have a hard time breathing with such a low pressure. You might need a little more pressure to give you enough air to be comfortable.

You mentioned that you seem to start leaking after a few hours. That could be explained logically if you had an auto machine like the follow up poster--most people see increased issues with breathing once they hit REM sleep, and that is when they need the higher pressure levels. Auto machines will raise the pressure to combat the problem. The higher pressure can cause more leaks. People normally hit REM sleep after a few hours in bed. But I don't think that is your case--your machine seems to be a CPAP machine, not an auto machine. A similar effect could be working in your case. People tend to relax much more when they get to REM sleep. You might be able to control the leaking up to that point, but then when you hit REM, you relax enough to start breathing through your mouth causing leaks.

Keep in mind that untreated breathing problems can (and does) lead to heart damage, brain damage, and stroke. You don't want to give up on this. You want to find a solution, and one that you can live with.

-john-

[kteague]

Yes, it is frustrating to feel unheard and that you haven't been given all the information that would increase your chances of success. Here's my thoughts on this... you need data. It's the only way to know if your pressure of 8 is adequate or even needed. Now, I doubt you'll be interested in investing in a data capable machine since you feel you may not even need the machine. But if you bought a used one, you could resale it later on. Or you could ask your doctor to order a 2 week trial on an auto titrating cpap. The data from that time will tell you what pressure you need and if you are still having apneas. The problem is you can check it now but then you'd need to do it again after losing more weight. But if you haven't first resolved your leaks, these efforts will be a waste of time as the data will not be reliable with large leaks.

There are answers to be had. Maybe not quick and easy ones, but it sounds like you are motivated to pursue them. One last thought, any chance you husband reports you moving or kicking a lot at night? Some people have limb movement issues and all the restlessness can make leaks more of a problem. Let us know how this pans out for you.
Kathy

[banarabbyt]

Thanks for the responses. I am definitely going to pursue this- it's ridiculous how little I feel I am being helped at this point by the sleep people. I mean for the second study I had to strap this thing to my stomach- and then because of that I slept on my back cuz it was slipping and THEN they told me I shouldn't sleep on my back I should sleep on my stomach/side! I'm like um okay HOW the heck am I supposed to know that's okay to do with this stupid thing strapped to my stomach?! I felt like I was given little to no instruction and that my efficacy study was WORTHLESS. I was not feeling well, I didn't sleep like I normally do, and so on. I'm very unsatisfied at this point.

I am going to see if I can get the raw data- they just sent me a printout with a bunch of numbers and said that I didn't have any apneas but that my heart rate fluctuated a lot. I'm like YA THINK? I'm like and this is not cause for concern to call me?

I'm not sure about getting older- I'm 27, I mean do most people start having apnea issues in their late 20s? If I were over 40 I could see oh yeah I'm getting older, but then I could be wrong.

Only reason I think it's weight is because due to medical issues I gained a lot of weight over a short time (about 45 lbs in one year) and then finally had to switch doctors TWO TIMES to get one that would actually freaking listen to me when I said that my weight gain isn't normal and losing my menses wasn't normal EITHER. Come to find I have PCOS and obesity is a side effect (lovely)... I had to alter my diet to account for my medical condition.

Anyways- it doesn't matter why I have sleep apnea- what matters to me is that I get some good quality sleep! According to my gowearfit I'm probably hitting REM sleep 1-2 times a night at MOST. The only reason I'm surviving is because I take Nuvigil to help with the daytime sleepiness and even then I'm still a bit tired. Without the Nivigil I believe I'd definitely be worse off.

I'll give an update soon- thanks for the responses. I am going to ask the doctor if I can go somewhere else for my sleep study from now on.

Oh btw no my husband has never said I have issues with kicking or moving my limbs a lot at night. Last night I did loosen up my mask and readjust it for to make sure the fit was perfect (I did this with the machine on), then I looked up my medication and one of them can have adverse affects on your sleep so I decided to not take it that night and change it to mornings. Then I slept in a comfortable side position and in the morning my husband said that I was only making the noise around 3-4 am. According to my gowearfit that's the only time I'm really getting a long stretch of sleep so I do suspect that's when I'm hitting my REM sleep. My mouth didn't feel dry this morning but that must be part of the issue. I'm calling the CPAP company as soon as they open and asking for a copy of my raw data and then ask them about a humidifier as well as asking about the REM sleep and leaking issues at that time.

Thanks everyone.

[banarabbyt]

Well I called and they said I can't get a copy of my data because it's 800 pages long... I tried explaining I have seen people with like 2-3 page items with some data and they said they didn't have that.

They basically then told me I need to ask my primary to see a sleep specialist.

So I called my primary and now I'm waiting... I told her about the mouth breathing and she just suggested a face mask- she also said she didn't feel I needed the humidifier but I insisted I wanted one and she said my primary has to request it.

[JohnBFisher]

... I tried explaining I have seen people with like 2-3 page items with some data and they said they didn't have that. ...

They should have provided it to which ever doctor referred you to the sleep lab. Let me be polite; Bull donkies!

If you are in the US you hare ENTITLED to anything within your medical record. You may have to pay for it. Request the sleep study summary report. If you get the same run around again, then ask to speak to a manager. Remind them that per the HIPAA law you are entitled to it.

... They basically then told me I need to ask my primary to see a sleep specialist. ...

Again, Bull Donkies! They provided a report to your referring physician. A sleep specialist may have read the report and signed off on the summary that went to the referring doctor. But your are ENTITLED to see that summary. Period. And if fact, if you are willing to pay for it, you can get a copy of the full 800 page report. You are getting a run around. You should ask to speak to a manager.

... I told her about the mouth breathing and she just suggested a face mask- she also said she didn't feel I needed the humidifier but I insisted I wanted one and she said my primary has to request it ...

She is correct that your doctor probably will need to write the prescription for the heated humidifer.

The studies are mixed on whether a heated humidifer makes a difference. I've seen "Yea" and "Nay" results. However, if YOU have problems with your nose drying out, sore throat or other indications of dryness in your upper airway, the overall consensus is that a heated humidifer DOES make a difference.

And here's a couple papers that provides evidence that it matters:

Effects of Humidification on Nasal Symptoms and Compliance in Sleep Apnea Patients Using Continuous Positive Airway Pressure
http://chestjournal.chestpubs.org/conte ... l.pdf+html

It concludes:

Compliance with CPAP is enhanced when heated humidification is employed. This is likely due to a reduction in side effects associated with upper airway symptoms and a more refreshed feeling upon awakening. Compliance gains may be realized sooner if patients are started with heated humidity at CPAP initiation.

Long-term Compliance Rates to Continuous Positive Airway Pressure in Obstructive Sleep Apnea
http://chestjournal.chestpubs.org/conte ... l.pdf+html

It concludes:

A population-based CPAP program consisting of consistent follow-up, “troubleshooting,” and regular feedback to both patients and physicians can achieve CPAP compliance rates of> 85% over 6 months

Effect of Heated Humidification on Compliance and Quality of Life in Patients With Sleep Apnea Using Nasal Continuous Positive Airway Pressure
http://chestjournal.chestpubs.org/conte ... l.pdf+html

It concludes:

The addition of heated humidification when nasal CPAP was instituted did not lead to better compliance, greater improvement in sleepiness, or improved quality of life, but was associated with fewer symptoms attributable to the upper airway.