Replies to This Discussion

Permalink Reply by 99 on October 31, 2009 at 2:10pm

, small quantities of mango, sweet potato, banana, persimmon, palm cabbage, rice, bean sprouts, or nuts stimulate the production of serotonin and can thus be sleep-inducing

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Permalink Reply by BeeAsleep on October 31, 2009 at 2:20pm

Hi Lynette,

It sounds like you have had some very frustrating times. It is twice as hard to keep-on-keeping-on when you are so tired. I wish I had a magic solution for you.

I do think that you are on the right path, it is getting a good fit in a mask with your face shape and your nose shape, the magic sweet spot as it were. Mask #3 was the fit for me, but I know others who have had to go through many more to get just the right one.

I know that there are many experienced xPAP users in this community that will be able to give you good tips for finding solutions for your mask problem given your self-pay consideration. I can only offer you encouragement and support to keep on trying because you WILL find the perfect fit for you and there are ways to get used masks for less money.

Hang in there!

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Permalink Reply by sleepycarol on October 31, 2009 at 3:44pm

I hear you!!

I feel your frustration as I have been there!!

For me it took a ton of masks to find the one I use nightly. Since I am on a high deductible, high copay (thanks to my employer -- who pays a portion of our premiums while we pay the rest) I purchased all but 3 of my masks out of pocket. I used www.cpapauction.com, eBay (which no longer allows the sell of masks) and a locally placed ad. I know I went through 10 or more masks before finding the perfect one.

On cpaptalk.com there is a mask roulette that forum members swap masks. There are several "trial" masks going around as well. You may want to check that out as well.

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Permalink Reply by birdshell on October 31, 2009 at 9:06pm

I was so desperate for sleep that I would have done almost anything. I was sleeping 12-14 hours a day. It seemed to take forever to notice an improvement. While it was slow, as in paying back a massive sleep debt...I could sense differences. It is only since January of 2009 that I have truly had better sleep.

I found that the problem was multiple causes. If I had it to do over again, this is what I would do:

1. Make sure that mask is secure. I have used all kinds of things to hold the mask on my head and the nasal pillows to my nares, but...mostly I have used the legs from tights (microfiber ones are uber comfy). If the mask is at all leaky or shifting, I will be unable to sleep. Just be sure to keep the exhaust holes free; covering them in any way will definitely affect your therapy, and not in a good way!

2. Consider having another sleep study: I had a PSG done (also known by other names such as CPAP study, re-titration, sleep study) after the first year. My initial pressure had been 9 cm; this study bumped me up to 13 and dx'd periodic limb movement disorder (PLMD) in the moderately severe range.

3. By the end of year 2 .5, I was still not where I had hoped to be. I was sleeping less, but still 9-10 hours a night. I had another PSG. My internist ordered it at my request, as my sleep specialist was no longer around. This found that my pressure should be 15 cm, but my PLMD was minimal with my medication.

4. Get more information; ask your doctor about everything possible: After wanting to have some data available to myself (someday I'll tell you about the DME provider ‘error’), I asked my doctor about a new machine prescription. He said that insurance wouldn't pay for it, which was fine by me.
I asked my family for the gift of a lifetime for Christmas: a beautiful APAP. Starting to use it in January, I found that my pressures were at the maximum and had to have the pressure bumped up a bit. Thus, my new pressure of 15 cm was now not optimal; with a few more months of tweaking we determined that my maximum pressure should really be 18.

This past month, in fact, one year after being titrated at 15 cm, my average was 15. 4 cm. HMMMMM! Interesting, as I'd never considered that it may vary by season quite so much. Now, this is just MY experience; it should not be generalized to anyone else. I am merely saying that I tried over and over to find answers with the consultation of my doctor(s). For me, added studies were needed and my insurance paid for them.

I only sleep well now because I have: my trusty APAP; my mask that I have modified myself; legs from microfiber tights; and my Mirapex medication for PLMD. It wasn't a short trip, but i am not ALWAYS tired now, and I am sleeping about 7.5-8.5 hours per night, depending on other factors. I have just determined that my SDB is not going to be a variable.

Please note that these are not meant to be your answers, but just examples to say keep on trying. The single most important factor in resolving sleep disordered breathing (SDB) is determination to make the program work. I would encourage you to find a sleep professional who can guide you, but you cannot be guided unless you tell your doctor about your experiences.

Keep on trying. I am sure that there must be some way to get quality sleep! Sorry, I have no magic—but, the quest for sleep is always worth the prize. :D

Karen

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Permalink Reply by susan mccord on October 31, 2009 at 10:51pm

Wow, Karen--you've had quite a journey........I'm curious about what you said about sleep changing with the seasons. Could you say more about that?

Susan McCord :-)

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Permalink Reply by susan mccord on October 31, 2009 at 11:14pm

Lynette, I'd like to share something with you that I learned about on SleepGuide some time ago and have only recently needed to try.

I too had quite a bit of trouble with mask leakage, am on my 4th mask. Someone on SG, I think it was Judy, told us about Mack's Silicone Ear Plugs being excellent for stopping leaks, sealing masks, and protecting nose and face from irritation due to the tightness required by the mask.

My current mask is full face and a few days ago I woke up with a VERY sore nose. Put up with it for a bit then got kinda nervous 'cause it was getting worse. Long story short, am using Mack's for a protective shield for the sore place. It works. It REALLY works. It comes in package of 4 plugs--I only use 1/4 of one piece, flatten it out with my hands, and just stick it to my nose. In the a.m., it's bonded to the mask and I can use it several more times,so it's very cost-effective. (Easy to remove from skin and from mask which is also silicone).

I'm wondering if you might experiment with using it to seal your mask so it won't leak and wake you...? It's been said that it can be rolled into a tube which you can then press against the mask where the leaks occur and bingo!, no leak. I haven't had to use it for that yet, but other people on SG have had good luck with it.

I buy mine at Walgreen's but you can find them in any drugstore, and probably at WalMart, Target, etc.--4 to a package so you can experiment with how to shape them to suit you. Be sure to buy the silicone plugs, NOT the foam ones, so you can use a small piece if that's all you need AND so you can mold it and it'll stay put.

I'm sold on this--it's working well for me. I'd encourage you to consider giving it a try. If my mask leaks, it keeps me awake too, which is just maddening! (I'm preaching to the choir here, aren't I ?!!)

I sure can appreciate your frustration--for some people this treatment is a long period of adjustment and tweaking. Please be sure to let us know how you're doing--THIS is the place where you can say EXACTLY how you feel and be sure others "get it" and will understand and support you totally.

Take care. I'll be thinking about you......

Susan McCord :-)

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Permalink Reply by Lori Strow on October 31, 2009 at 11:32pm

Have you tried the Mirage Swift LT for HER nasal pillows ? It's fairly new and very popular with the ladies. It comes with 3 sizes of pillows, X-SM, SM, and MED. Also, ResMed has just come out with a nasal gel mask that looks like it might be comfortable- as comfortable as a mask can be... I would try the LT for Her pillows.
Lori

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Permalink Reply by sleepycarol on November 1, 2009 at 10:02am

Lynette,

Could you share with us more about the problems you are experiencing? I know you say it whines and whistles, but can you be more specific. Some masks are just louder than others.

For me it took a slew of masks before I found the one I settled on, but we maybe able to help you more if we knew which mask you found MOST comfortable, where it was leaking, etc. We maybe able to come up with some ideas to help that won't involve purchasing yet another mask that might not work.

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Permalink Reply by Renee on November 1, 2009 at 11:43am

Susan and Judy ~ Thank you for the tip !

And, Lynette, I am new to OSA and SG, so I can't offer advice to you but I can would like to say through the road-blocks that I have run up against so far, I have received really great info, advice and support to postings that I have placed on the forum as well as by reading many, many of the discussions posted by others. I hope you will find some answers right away by way of your posting, but I also hope you'll keep checking back to the SG discussions because I think that you'll get the continued advice and support here that will help get you to restful sleep and better health.

Wishing you all the best,
Renee

susan mccord said:

Lynette, I'd like to share something with you that I learned about on SleepGuide some time ago and have only recently needed to try.

I too had quite a bit of trouble with mask leakage, am on my 4th mask. Someone on SG, I think it was Judy, told us about Mack's Silicone Ear Plugs being excellent for stopping leaks, sealing masks, and protecting nose and face from irritation due to the tightness required by the mask.

My current mask is full face and a few days ago I woke up with a VERY sore nose. Put up with it for a bit then got kinda nervous 'cause it was getting worse. Long story short, am using Mack's for a protective shield for the sore place. It works. It REALLY works. It comes in package of 4 plugs--I only use 1/4 of one piece, flatten it out with my hands, and just stick it to my nose. In the a.m., it's bonded to the mask and I can use it several more times,so it's very cost-effective. (Easy to remove from skin and from mask which is also silicone).

I'm wondering if you might experiment with using it to seal your mask so it won't leak and wake you...? It's been said that it can be rolled into a tube which you can then press against the mask where the leaks occur and bingo!, no leak. I haven't had to use it for that yet, but other people on SG have had good luck with it.

I buy mine at Walgreen's but you can find them in any drugstore, and probably at WalMart, Target, etc.--4 to a package so you can experiment with how to shape them to suit you. Be sure to buy the silicone plugs, NOT the foam ones, so you can use a small piece if that's all you need AND so you can mold it and it'll stay put.

I'm sold on this--it's working well for me. I'd encourage you to consider giving it a try. If my mask leaks, it keeps me awake too, which is just maddening! (I'm preaching to the choir here, aren't I ?!!)

I sure can appreciate your frustration--for some people this treatment is a long period of adjustment and tweaking. Please be sure to let us know how you're doing--THIS is the place where you can say EXACTLY how you feel and be sure others "get it" and will understand and support you totally.

Take care. I'll be thinking about you......

Susan McCord :-)

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Permalink Reply by Lynette on November 2, 2009 at 10:31am

Wow, thanks to everyone who has responded. It helps emotionally just to have this kind of support. Sorry it's taken me a few days to get back on here...I was in charge of our church Harvest Party Saturday night and have been a "little" busy. :-)

As far as the mask whistling and whining, the mask just whistles...I was the one whining. :-P What I call whistling is the high-pitched sound when there is minor air leakage around the mask, not the air coming out the vent. It's loud enough that it wakes me up. Of course, that turns into a full rude sound when I pull the mask away from my face to try and reseal it several times a night. It looses its seal more often as the night progresses, I don't know if that's due to me sweating or skin drying out...oily skin is not my problem.

My current mask is a Liberty Hybrid mask. I do like it the best of any mask I've used (except for the leaking) because I can use moisturizer around my eyes at night again. I didn't mind the Quattro full face mask except that I had to get an extra-small to fit my mouth and nose, which put the headrest on my eyebrows. I am a mouth-breather, so just nasal pillows don't work, even with a chin strap. I've tried three other nasal pillows and another full-face mask, too. (I do know about cpapaution.com, have used them several times for masks and supplies - a Godsend for us self-payers!)

My pressure is only at 9, so it's not like I have gale-force winds blowing my mask off my face. I do keep my mask clean and I'm careful not to get moisturizer anywhere the mask will be touching. I will try the Mack's Silicone Ear Plugs, that sounds like a good, affordable place to start.

Thanks for all the other advice and personal experiences. It has given me a lot to consider and try. Like I said, just the support and knowing you're not in this alone helps!!

sleepycarol said:

Lynette,

Could you share with us more about the problems you are experiencing? I know you say it whines and whistles, but can you be more specific. Some masks are just louder than others.

For me it took a slew of masks before I found the one I settled on, but we maybe able to help you more if we knew which mask you found MOST comfortable, where it was leaking, etc. We maybe able to come up with some ideas to help that won't involve purchasing yet another mask that might not work.

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Permalink Reply by sleepycarol on November 2, 2009 at 6:20pm

Okay another stupid question for you Lynette

Is your mask the Liberty or the Hybrid? There is a mask named the Liberty that is made by Resmed and then there is the Hybrid that is made by another company -- Innomed. Both of these masks have pro and cons and they aren't in the same areas. BUT they are similar in the way they are made and some have found if one didn't work for them the other did fine.

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Permalink Reply by Andy on November 2, 2009 at 8:24pm

Hi Lynette,

Sorry to hear you're still having trouble.

I'm using a Resmed nasal mask, and it sometimes whistles through the front vent holes. I just put my palm over it to block it for a few seconds, and it seems to clear. Not what you're experiencing, I assume.

I don't want to get started on the self-pay and insurance issue, only to say that it should be that the self-payer gets the discount, too. After all, you're paying now, and they don't have to wait for 60+ days for their money from an insurance company.

You also gave me an idea... What happens to all of these masks and such that the insurance pays for, but the patient doesn't use? I wonder if there's a way to set up a sort of "swap shop" here where people could post any equipment they have, but don't use?
There may be some liability issues, but I would think there's a way to deal with that...

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