Sleep Apnea

[hiwaygal]

Got my machine on Friday. Some kind of mask with nasel pillows - doesn't hurt near as much as the over the nose mask I used at the sleep center. The problem that's making me nuts now is how much the full force gale at setting 13 hurts my sinuses. I can't imagine wearing this thing every night for the rest of my life.

LindaBabe...I have the same problem with the nasal pillows! In some ways they are great because they are usually so light and the headgear is so much more comfortable, but that pressure in just the right spot is very uncomfortable. This was the hardest part for me...finding a mask/headgear combination I liked and was comfortable. I finally went back to the Respironics nasal mask and have been wearing it for almost 4 months straight now.

Keep working with your respiratory therapist...there are literally hundreds (if not thousands) of masks out there. You will find one that works for you, it may take awhile, but it is probably out there! Good luck!!

I go to the sleep Dr. tomorrow morning to discuss my 2 sleep studies. I really hate that I don't know what to expect, since the tech's didn't give me much info at all. Do they try to push certain machines/masks on you to purchase? During my 2nd study last week, I tried the nose mask first, and it was ok. But, I'm a side sleeper, and I eventually got a leak. She tightened it, and strapped my chin. I tried for a while, but then I felt very claustrophobic. I felt like I HAD to breath through my mouth! And, I'm really a mouth breather, so I was very conscious about that. I switched to the full mask and it felt better. However, I just don't know which one to try, since I don't feel like either were that great being a side sleeper, and a mouth breather! I did feel like I was able to wear the nose mask, and that I didn't need to breath through my mouth like I usually did. But, I must have started breathing through my mouth during sleep, in order for them to put the chin strap on me. I'm just so confused....

disneyfan551...Personally, I think some doctors do try to "push" certain brands on you. At least that was *my* experience...but yours could be different.

My advice is to be very clear on what is comfortable for you and ask about how often you can try new masks with your insurance coverage. I got to the point where I was willing to pay out of pocket for a mask if I had to, but I was lucky in that my insurance allows me to try a new mask every 3 months or so.

The first thing I would do is get the mask that was most comfortable for you at your test.

How it will work for you is dependent on whether or not your doctors office also supplies equipment or if they refer you to a separate provider of DME's (durable medical equipment).

When I went back for the results of my study, I took home my machine that day, but I know others have had to wait awhile for the machine to be ordered, and a respiratory technician to come out to help you set it up.

Let us know how it goes and if you have other questions!!

 

[Muhlenberg]

My DH has a CPAP and wears the full face mask. He uses Breathe Right strips with it, and it seems to help him.

Travel - We recently flew with the machine. Some TSAs know what they are; some don't. But the CPAP ALWAYS has to be hand inspected. Other than that, the most trouble we had was finding distilled water.

Hope this helps some of you.

 

[Muhlenberg]

Oh and I might add that I sleep much better now that my DH uses the machine.

 

[eek40]

I was given this as a link to a post I had about fellow Hosehead support on the community board.

I am new and proud hosehead/cpap user. After finally figuring out that maybe sleep apnea was effecting my health and getting a sleep study done on June 26th! I was told getting my first study that most patients do not get the split study because you have to have so many events per hour. So I was not counting on anything, just hoping that I would know with one test to cut back on costs. At one am on the night of my test the tech came in pretty quickly and said that I was having a lot of trouble, and he wanted the machine on me. I quickly fell back asleep and woke up feeling MUCH better than normal. Wow its not normal to have a headache each and every morning? LOL.

He stated that he was putting my test at the top and that I should contact my dr right away to tell him that I have an AHI of 174 an hour and my oxygen drops to 65-70% for the three hours of testing before cpap. This way I could get a machine sooner rather than later! He said that my numbers were one of the worst he had ever seen. My Dr's nurse however, decided that I was not being resonable and refused to pass on the information to my dr, which resulted in me having to get a new dr! The new dr took one look at the results(which took him all of 5 min to get and the nurse at my old dr said it would take up to a month!) and ordered the machine. I had it three days later! What a difference a good dr makes!

I am learning only 4 nights on so far, but I am learning ways to adjust. I have had problems with the mask so I have a new one to try tonight. This one has the nasal pillows, it feels better but I have to try it with my pressure. Since I am at a 20 for pressure nasal pillows may not work. I so hope they do though! I have a huge sore under my nose from the mask rubbing, and I have to keep it half way down my lip to keep it away from the sore so I am moving it all night long.

Yes I sleep better, and I feel better, but I am frustrated. I have a ton of sleep debt to repay and with the mask I hope I can start to feel normal again.

I tried the community board post in hopes of getting a support thread going since I know there have to be people here dealing with the same problems and nerves as I am Looks like I have found the right place!

I also started a page on myspace with my affectionately named "Hosehead Diaries!" So if anyone wants to read they can just pm or email me.

Hopefully we will all be on soon!

Thanks
Aimee

 

[hiwaygal]

Welcome Aimee!!!

Wow...what an ordeal you had to go through to get your machine! But I'm glad it all worked out. And yes, sometimes you have to switch doctors to get the best treatment for you.

I have heard of some folks who did so poorly through the first part of the study that they were immediately given a cpap to try. I'm glad it worked out for you!

You were very smart to keep pursuing things because as you know, sleep apnea CAN be very detrimental to your health.

I've had my machine for a little over six months now. I was lucky and didn't have a lot of trouble adjusting to the machine/pressure...and I am finally getting used to a mask, but I am on the lookout for a better one...the "perfect" one.

I hope the nasal pillows work for you!!

This thread isn't incredibly active, but you can always PM one of the others who have posted to maybe get a faster response.

 

[hiwaygal]

Oh and I might add that I sleep much better now that my DH uses the machine.

I've heard that from a lot of wives!!! And I'll bet my DH feels the same!!

Thanks for the tips about the travel...I have traveled with mine, but not by plane yet. I do know that the CPAP doesn't count as a carry-on so that might help some folks. And yes, now, with the liquid restrictions the distilled water could be problematic!

 

[eek40]

Well lol I say we make it more active! LOL Although for the most part I am to tired to help LOL Wishing we had a hose head mickey to cheer us up. The machine I do fine with, its the mask. Sounds like everyone has this problem. What pressures are people on? Mine is the highest my machine goes so that makes leaks hard to control. I am hopeful that tonight with the new mask I will be good to go. I would really like to have a few masks so I can change them up now and then. I am thinking of buying some off ebay, as long as they are listed as new I am fine with them! Also has anyone here been over to the support group apneasupport? It has helped me as well. I just wanted some fellow disers to join in! LOL
Aimee

 

[eek40]

Well not much luck with the nasal pillows. I remember thinking about 3am that I should either take it off or go ahead and put on the full nose mask. Then I fell back asleep and just bugged my partner all night with the noise and jerking(I jerk when I stop breathing apparently?) So tonight I will give it another go and then switch back to the nose one if it still hurts and gives me more problems. Then I guess I will try another one or just deal with the nose mask one.

I sure wish they customized masks! LOL wouldnt that be fun, some sort of molding of your face to get the perfect fit? Dreaming here.

 

[hiwaygal]

Aimee...I'm sorry the nasal pillows bothered you. Maybe you can try alternating them and the other mask for a few weeks to sort of "build up" your ability to deal with that pressure and the nasal pillows. That's what I did for awhile, but in the end, I went back to the nose mask.

My pressure is 11 (I think) so not as high as yours. My Respiratory Tech said that, to some extent, there is some compensation in the machine for small leaks. She said not to worry much about them UNLESS the air is blowing right into your eyes. Personally, I can't seem to tolerate even the smallest leak.

Right now, I have three masks (one has both the nose mask and the nasal pillows) but really only use the first one I had. In a few weeks, I'll be able to try a new mask again.

Your idea of custom masks is a good one! I've dreamed of that too! Maybe someday...

 

[I loveStitchnippyjon]

Hmmmm...I never thought about having more than one type of mask! I have been using the nasal pillow type for almost two years now, and still have a problem sometimes with it becoming dislodged when I lay on my side. I freaked out during my second sleep study when they tried a full mask on me...I WARNED them that I was claustrophobic! So the pillow type is great beause my nose and muth are not covered.
I have to confess...when I travel I usually put tap water into the resevoir! It has not seemed to do any harm. Also, I have allergies and often wake up with a stuffy nose. It is wonderful how the CPAP machine can force air up my nose all night even when my allergies act up!
DH was initially worried about the noise from the machine, but mine is ultra quiet. Now if he would just stop making jokes about sleeping with Jacques Cousteau!

 

[TruBlu]

Hi guys!

I had a sleep study last week. I guess I have sleep apnea because at some point during the night they brought the mask in and hooked me up. I think I slept better once they did. I know I felt very rested when I woke up. I go back to my ENT on Thursday for the results.

Wish me luck!

 

[hiwaygal]

Hmmmm...I never thought about having more than one type of mask! I have been using the nasal pillow type for almost two years now, and still have a problem sometimes with it becoming dislodged when I lay on my side. I freaked out during my second sleep study when they tried a full mask on me...I WARNED them that I was claustrophobic! So the pillow type is great beause my nose and muth are not covered.
I have to confess...when I travel I usually put tap water into the resevoir! It has not seemed to do any harm. Also, I have allergies and often wake up with a stuffy nose. It is wonderful how the CPAP machine can force air up my nose all night even when my allergies act up!
DH was initially worried about the noise from the machine, but mine is ultra quiet. Now if he would just stop making jokes about sleeping with Jacques Cousteau!

I'll confess the same thing about tap water ...I'm sure someone can or will correct me if I'm wrong, but the biggest issue is mineral build up in the chamber if you consistently use tap water and they heated humidifier. I think if you are rinsing well every night and NOT using the heated part, you're probably okay for the short period of time during travel.

Hi guys!

I had a sleep study last week. I guess I have sleep apnea because at some point during the night they brought the mask in and hooked me up. I think I slept better once they did. I know I felt very rested when I woke up. I go back to my ENT on Thursday for the results.

Wish me luck!

Hi Blu!!! Keep us posted and lots of coming your way!

 

[eek40]

Welcome to the group! I know that first night I felt so great for the first time! Just remember that finding the right mask will take time and patience, I thought it would be easy but its a lot harder than it seems. Just keep at it and do your best to wear it every night, even if you end up not making it all night the more you do it the easier it becomes. Hang in there

Hi guys!

I had a sleep study last week. I guess I have sleep apnea because at some point during the night they brought the mask in and hooked me up. I think I slept better once they did. I know I felt very rested when I woke up. I go back to my ENT on Thursday for the results.

Wish me luck!

 

[eek40]

Ok everyone, what do you do when your mask rubs a sore on your nose and you have had it for over 10 days and it will not heal because of the moist air on it nightly. Nose pillows avoid the air but I can not use them due to the pain inside my nose from them and my pressure settings. So nightly it is being rubbed raw and then kept moist. Its nasty when I wake up and I am in fairly severe pain. I know I sleep better with the machine. I am just tired of the pain.

 

[TruBlu]

Welcome to the group! I know that first night I felt so great for the first time! Just remember that finding the right mask will take time and patience, I thought it would be easy but its a lot harder than it seems. Just keep at it and do your best to wear it every night, even if you end up not making it all night the more you do it the easier it becomes. Hang in there

I tried the one that fits into your nose. I only wore it for half the night, but it worked great and didn't really bother me. Should I try others or stick with that one? (This is all assuming they will give me a machine when I go back to the doc. this week.)

 

[hiwaygal]

Aimee...

If I were you, I would call in to your provider and let them know that the mask is causing problems. You could probably put something on it (a small bandage) but that's not really going to solve the problem.

It sounds to me like you are having to wear the mask too tight. I know I feel like I have to wear mine tighter than they recommend, but not tight enough to cause sores.

Keep in mind, too that you really only need to wear the mask 4-5 hours a night. Maybe try the nasal pillows again while you give your nose a chance to heal and just take it off when it starts bothering you.

But, I really think you should look into a different mask!

Good luck!

 

[eek40]

I am trying a gel mask tonight, maybe the softer gel will not rub as much. I know I tighten it really tight with my pressure settings at the highest they go its very hard to not leak. I am going to figure out something soon believe me.

I was told that I should never be asleep without the mask, I have very very high levels of apnea 174 an hour. They said all the time is what I should do. I did have one night where I took it off at 430am, but still that was enough to count towards compliance. I just need this sore to heal then I really think it will be fine. Its that which is causing me the most distress. I think tonight I will try the new skin again to see if it keeps it drier.

Aimee...

If I were you, I would call in to your provider and let them know that the mask is causing problems. You could probably put something on it (a small bandage) but that's not really going to solve the problem.

It sounds to me like you are having to wear the mask too tight. I know I feel like I have to wear mine tighter than they recommend, but not tight enough to cause sores.

Keep in mind, too that you really only need to wear the mask 4-5 hours a night. Maybe try the nasal pillows again while you give your nose a chance to heal and just take it off when it starts bothering you.

But, I really think you should look into a different mask!

Good luck!

 

[arminnie]

Has anyone considered surgery for obstructive sleep apnea?

Here's a very good web site - although very technical - from the Stanford surgeons (Powell & Riley) who invented most of the sleep surgical procedures. http://www.sleepsurgery.com/protocol.html

I was diagnosed in 1993 - hardly anyone had heard of sleep apnea back then. I constantly had to explain what it was to people.

CPAP and BiPAP did not work for me. I had no trouble tolerating the mask - I wore it for almost 2 years, but it just did not work for me.

I had surgery in 1994 - pretty complicated. They moved my tongue forward in addition to the usual palate and uvula reduction.

I'm 13 years post surgery, and it worked wonderfully.

 

[hiwaygal]

Hi arminnie!

Surgery wasn't presented as an option to me. Even after finding out I have other health problems caused by the CPAP machine.

I might ask my doctor about it next time I see her, but to be honest, I don't mind the machine that much. I've always liked a cool room and before I got my machine felt like I needed a humidifier and decongestant to be able to breath at night. Now, I don't have those problems and DH can stay warm in our room

I just wish I could find a better mask.

That surgery does sound rather drastic! I'm glad it worked for you though!!

 

[TruBlu]

My aunt had surgery. I'm not sure of the details - I just remember something about a screw at the back of her tongue. I'm hoping the machine will work for me.