Severe Sleep Apnea

C., I know that dealing with apnea is very frustrating and my heart goes out to you. My daughter had a jaw distraction at 13 days old to extend her jaw because her tongue occluded her airway all the time--not just while sleeping. She was born with a condition called Pierre-Robin Sequence which involves a proportionally small jaw and cleft palate (the two of which cause a host of other problems). I am certain that your husband would have already gained this diagnosis if it were his issue, but it is possible that his apnea could be caused by a small lower jaw not providing adequate space for his tongue. I have talked to adults who have had this procedure and I now know of several babies who have had it, as well. If your husband has an even slightly recessed chin, have him ask his docs about it.

Please feel free to PM me if you want some more info. I pray that you guys can get this straightened out very soon.

.

before i had my son, i was in nursing, and now that i stay home, i still get some of the journals in the mail. there is hope. they are currently testing a new c-pap that uses a nasal canula instead of a mask. a canula is the little tube with two little protrusions that sit right inside the nose. like the way that you supply oxygen to any one in the hospital. they are supposed to be so much more comfortable, and less invasive. as far as the surgery goes, i think that having tonsils and adenoids out is probably the safest surgery that you can have. it has become so routine, that it can be done in less than 30 min. i think that if your insurance will cover it, it could be well worth it. good luck.

I have sleep apnea and use the c-pap myself. It is difficult to deal with. I too have gone back and forth with masks, and the leaking of air wakes me throughout the night at times. The thing is, I feel so much better throughout the day when I am sleeping with the mask on, so I keep struggling on to keep using it. I saw an episode of the View when Rosie was still a host that did a segment on sleep apnea and the different masks that can be worn. There were a few that I had never seen, and one that I remember thinking would be so much better than what I use.(currently using the Pillow Soft that just covers the nose) You may be able to research masks and find one that your medical supply distributor doesn't have that would work well. You might even be able to contact the View to ask for resources that were used for that segment. Tell him to hang in there. Sleep apnea increases your risk for heart attack, stroke, and other deadly diseases, so it's important to find something that works.

Hi C.,

My husband has severe sleep apnea and we just recieved the cpap machinea month ago. While he was doing the sleep study, they tried several masks on him and the nasal pillow worked best. It is not so constrictive and the headpiece doesn't make you feel as if you are in a vice. My husband hated the mask that went over the nose and mouth and could not sleep with it. One good thing about this machine, it has a water reservoir that has a dial to make it moist heat so that the nasal passages don't get irritated. My husband is very happy with it. I just fill it with distilled water every 2 days. One good thing about it is the amount of humidity he gets is adjustable. He is doing well with this machine and sleeping much better. Now I don't have to listen to him breath at night to make sure he IS breathing. He doesn't like the fact that he has to wear it but he is doing it. His concentration of oxygen is very high so even if the nasal pillow slips he is still getting oxygen. If you want the name of the particular machine, let me know. I will have to get the paperwork out and I would be happy to do it for you.

Good luck to you and your husband.

E.

Yep. I had, yes had, sleep apnea. I used the "Darth Vadar" mask for about 3 years. I had to have my tonsils and adnoids removed for reasons other than apnea. They did a sleep study on me 8 weeks later just to check and I no longer have sleep apnea.

The adnoids can not be seen by the ENT unless they go into do the surgery. At this point clearing hs airways of everything is probably a good idea.

My dad has this. He has found the most success with the sleeping mask. It may take some time to get used to, or you may want to see if the doctor can "adjust" it or try a different brand.

My dad did not have the surgery but told me about it. They have to cut something in the back of the throat. The doctor told him that people who have the surgery will have trouble swallowing for the rest of their lives. That's why my dad went with the mask, even though it meant he had to leave the navy.

Make sure to go back to the doctor for advice. Perhaps there is a medication that can help make the transition smoother. But from what I've heard, they don't recommend the surgery for someone young unless nothing else works.

Good luck! Be glad you got this diagnosed. I know how bad my dad got before his was diagnosed.

I'm not an expert, but I also have sleep apnea. I am also a psychologist who often encounter others with sleep apnea who are depressed and fatigued. It took me quite a while to get used to the mask, and I had to try several before I found the one that worked best for me. New technology is coming out every day, so he should keep asking the sleep center where he is being treated. If you are in a small town or feel like your sleep center is not up on new technology, try another clinic that is. Don't give up on the mask. I am not aware of the surgery options, but that would be a good question to ask the sleep specialist also. Good luck.

I too, have s apnea. Mine was dx about 2 yrs ago. The masks are terrible. You really have to be of a mindset, and make yourself sleep with it. You really do feel better when you use it. I have the kind that is just in the nostrils. I find that to be the easiest to tolerate. I guess you need to go to a website for s apnea, and maybe there is a support group and you could get different opinions. Good luck.

There are some safe and fairly simple surgeries available but he needs to pursue this with his doctor.

Hi C.,
My three brothers, father and I all have sleep apnea. We are all on CPAP machines (Boy! is it a mess when we all go camping together! Extension chords running off of batteries EVERYWhere! LOL)

I didn't do well with the full face mask either. It "broke" seal all the time and the air leak was louder than my snoring had been! (Not to mention I wasn't getting the help I needed!!)

There are many, many, many different masks and most of the styles come in different sizes. It doesn't sound like your husband has found the right size/style for his head shape and face yet.

My family all wear what we call the "pig snout". It covers just the nose. The nasal pillow was too easily pushed off of each of our noses since we are all side sleepers. For us, the gel pillow nose mask called, "Profile Lite Nasal Mask" has worked out the best.
The trick seems to be to tighten the velcro headgear just tight enough to hold the mask lightly in place. If it is tightened too much the "snout" really IS uncomfortable AND seems to break the seal even more than when it is more loosely worn.

The masks need to be washed in warm, soapy water every week. When the gel starts to discolor or look wrinkled, it is time to replace the mask.

We have found them on-line much cheaper than we are able to get them thru our local medical supply. However; sometimes the medical supply personnel are trained in helping clients find the appropriate mask and fit...so you might want to check there first. Also, ask about a trial period. I was able to try several masks before actually purchasing any of them---that was a huge help financially!

One of my brothers and my dad had the procedure where the Uvula (the Hangy down thing at the back of the throat)is removed, neither of them has tonsils. Although they did see some improvement, both still need to wear CPAPs and have sleep studies done every two or three years.

I don't know if your husband is a swimmer or into water sports, but, if so, he needs to discuss this with his doctor before opting for the removal of the Uvula. Without this "flap" there is no way to block the water from entering the nose, throat and sinuses. It also took my brother and dad a while to learn to eat without getting choked since the "flap" also helps in opening and closing the right "pipes" while eating.

Tell your husband not to give up. Sleep Apnea is really hard on the heart. He may be fit and very healthy, but the strain of apnea can still cause damage.
V.

Hey C.! My husband is the same size has sleep apnea, although not to the severity of yours. He does sleep much better w/breath right nose strips. He also has an irregularly fast heart beat we are monitoring it. Have the doctor's checked his heart? My husband's stress level also affects his sleep apnea. Less stress better, more stress worse. You do have alot going on at your house, and unfortunately, babies add to no sleep. Do you get up alot at night w/the little one? Maybe a night or 2 you could sleep in another room. i know when I am restless it affects my husband's sleep. I realize this is alot and as I said my husband is not near the degree which your husband is at, but I just wanted to share some of the things we have tried. This is a little personal, but sex always makes him sleep better. Try it! I will pray for your family and your husband.

Sincerely,
D.

I sleep on a C-PAC, and I hate it! I've used it for almost 8 years, and I still hate it. The surgery Eileen mentioned was the other option I was given. Since using the C-PAC, my sinuses are ALWAYS either infected or irritated!..I would like to have the surgery, but my sleep apnea is so bad that I am now afraid of having general anesthesia. During the pre-op for a prior surgery, the anesthesiologist met with me and explained why my being put to sleep was so dangerous to me. Needless to say, everything went well, but the doctors were concerned. If he is a good candidate for the surgery, I'd say go for it. The recovery is not that bad.

Hi C.,
I know what you are going through because my husband has Unbelievably awful snoring and sleep apnea! After 10-11 seconds of him not breathing, I shake him to get him out of it and to breathe!
My husband has had the sleep tests and he definitely would do better if he lost weight and was more fit, but what might be helpful for you is for you guys to check in with an ENT doc. Ears, Nose and Throat doc. They offer what is called an LAUP or UPPP lazer surgery. The "uvula"- the dangly thing in the back of your throat sometimes falls down into the breathing area of the throat passageway when you are sleeping on your back and that is what is causing the "no breathing" scenario. It can become irritated, sore and enlarged. It doesn't have much to do with being over weight or not. Granted, being healthy and trim is good for your health, but my husband has always had this- even when he was 6 ft, 150 lbs in college!!!
I would go and check it out on the internet--- LAUP and/or a UPPP to different types of surgeries to remove the Uvula. One does it in stages- in house office visits, usually and the other is, I believe,surgery where they remove it all at once. It can be sore afterwards, but it may make the difference for him...and YOU! MANY sleepless nights with the laying there, listening to the snoring and the non breathing.
I am no expert on this, but I did work for a reputable ENT office in Reston, VA before who did these surgeries. So, they would be the route to potentially research as another possible solution.
Good Luck!
E.