I felt the need to post something after my husband was put in the hospital for kidney failure on 1/11.   The bottom line:  he does not even have sleep apnea, or if he does, it is not of a severe nature at all.  He was misdiagosed.   After dancing w/ all these problems at least 8 months, it seems not one of 4 specialists ever did a hemaglobin test.   His hemaglobin level was less than half what it should have been.  Also at play:  the blood pressure medicine he was on is known for causing swollen ankles, but no one looked at that either until the nephrologist pointed it out.  Without a good blood supply, the kidneys could not take care of the swollen ankles.  All the other problems that kept getting worse (including the jerking at night) were the result of very severe anemia.   I knew there was something so wrong w/ the picture all these months, that isn't wasn't just my own reaction to that mask.  I knew he wasn't getting better, yet the pulmonologist acted like I was the crazy one.
Bottom line:  The cardiologist told me to follow my gut instincts, and from here on he will be the one to "streamline" everything including coumadin levels through his office.   My husband hasn't had that machine since he went into the hospital and didn't need it once he was given the first unit of blood (it took three altogether).  We have lost a chunk of our lives, but at least I have him back now.   My message to other spouses would be just what the cardiologist said to me:  follow your gut and keep calling if something doesn't seem "right."   The specialists go w/ their usual diagnosis even when the symptoms are not overwhelmingly pointing to their area.

upset spouse wrote:

The bottom line:  he does not even have sleep apnea, or if he does, it is not of a severe nature at all.  He was misdiagosed.

Was he not tested in a sleep lab?  I don't see how an obstructive apnea event can be mis-diagnosed.  You either stop breathing, or you don't.  Of course there is more to it than just that but something sounds fishy.

BTW...even mild apnea is a problem and can be detrimental to your health.

yes, he was tested in a sleep lab.  But there are more reasons to stop breathing than sleep apnea.   No oxygen in the blood is one of them...it exacerbated all the other issues he had going on.  There were so many other issues, but everyone just lumped them under the "sleep apnea" label without doing basic lab work beyond blood thinner.

I doubt he has apnea at all, actually.  He no longer snores, jerks, or feels the chronic severe fatigue he has felt all these months.   Part of what told me something was amiss was the sudden way everything had gone downhill.  All his organs were laboring under extreme duress.  I am just so thrilled they found the cause, thrilled he feels better, and thrilled to be free of that repulsive machine.  I am trying hard not to feel bitter that so many doctors failed to listen to us or investigate the swelling ankles further until he reached a crisis.

Upset Spouse, I'm very glad you found a solution and that your husband (and your) health is getting better.  My husband is also off the machine permanently and isn't even snoring anymore.  He's on a prescription nasal spray which has really changed everything.  I think my husband still has mild apnea and snoring, but ONLY if he sleeps on his back.  Fortunately, if he does roll on his back, he wakes himself up and rolls over (so I don't have to wake up and poke him).  Although people say that even mild sleep apnea is detrimental to your health, I think getting little to no sleep (including your partner) for months on end while trying to "adapt" to a machine is far worse.  I still feel VERY strongly that doctors diagnose apnea and give you a machine.  They do not look at the bigger picture at all.

upset spouse wrote:

and thrilled to be free of that repulsive machine.

You really need to address your deep seated issues with life saving medical hardware.  I hope you can work out your feelings NOW when everyone is healthy so that if your husband, kids (or YOU) ever need the assistance of a device down the road of life (Wheelchair, artificial limb, CPAP, whatever) you will be able to better cope instead of being needless repulsed by something that could save a family members life.

Janet K wrote:

He's on a prescription nasal spray which has really changed everything.  I think my husband still has mild apnea and snoring, but ONLY if he sleeps on his back.  Fortunately, if he does roll on his back, he wakes himself up and rolls over (so I don't have to wake up and poke him).

A CPAP machine basically "blows open" the passages so you can breath unencumbered.  If a nasal spray accomplishes the same thing, fantastic.  Of course, one could also argue which "cure" is worse.  A hose on your face?  Or spraying chemicals up your nose every night for life.  There are two sides to every coin.

I don't have any issues with machines.  Getting him tested was actually MY idea and I totally embraced the CPAP's use.  I went without much sleep because of the machine's noise and didn't complain for over a month because I truly wanted what was best for my husband's health, because I love him a whole lot.  As I've said previously, the machine's noise was not constant.  At times, it was similar to a vaccuum cleaner, others it was quiet.  I think if the noise had been constant, we both could have gotten used to it.  In the end, the reason the machine was loud was because the air wasn't getting through his blocked nose, so it was coming out of the mask and the machine itself sounded like it was struggling.  The machine couldn't "blow open" the passages because they were BLOCKED.  APAP showed that the air levels were correct, but it just didn't work.  The marks it left on his face were bad.  I have a friend that's using a bi-Pap and doing very well on it.  It has changed her life.  I'm not saying that CPAP is a bad thing.  I just think people need to remember that it's not the ONLY thing.

The good news is that he doesn't have to use the nasal spray EVERY night.  He actually hasn't used it in a bit, but will probably have to start up in the spring/summer.  Nasal surgery is in his future as his septum is extremely deviated, but he's not looking forward to that, as we know it's painful.

Hi Janet K,

It's really great that you have been trying to help your husband with his condition. I took some quotes from your three most recent posts.

Janet K wrote:

.  Nasal surgery is in his future as his septum is extremely deviated, but he's not looking forward to that, as we know it's painful.

Did your husband have any sinus or respiratory issues before starting PAP?

People have reported in posts that deviated septum can make it difficult to use PAP. The surgery to repair a deviated septum is the only sleep-apnea related surgery that seems to consistently get reports of positive results. It is not considered to be a cure for sleep apnea, but does help with breathing and use of PAP. If you have not done so, it is worthwhile to read through the following thread, because people describe their experience and include a lot of tips to help with recovery:
Deviated Septum Surgery Experiences
http://www.apneasupport.org/about9963.html

Janet K wrote:

My husband is also off the machine permanently and isn't even snoring anymore.  He's on a prescription nasal spray which has really changed everything.  I think my husband still has mild apnea and snoring, but ONLY if he sleeps on his back.  Fortunately, if he does roll on his back, he wakes himself up and rolls over (so I don't have to wake up and poke him).

Do you have copies of the sleep study reports? Have the results ever been posted? There may be data in the reports that indicates whether or not his condition is effected by body-position, and, if so, to what extent.

Janet K wrote:

Have other people experienced loud noise from the Remstar?  I think my vaccuum cleaner is quieter.  It seems to start quiet and get louder the longer you have it on.  By morning, it's ridiculous.   [...]As I've said previously, the machine's noise was not constant.  At times, it was similar to a vaccuum cleaner, others it was quiet.  I think if the noise had been constant, we both could have gotten used to it.  In the end, the reason the machine was loud was because the air wasn't getting through his blocked nose, so it was coming out of the mask and the machine itself sounded like it was struggling.  The machine couldn't "blow open" the passages because they were BLOCKEDThe marks it left on his face were bad.  .

It’s difficult to determine the noise issue. "It seems to start quiet and get louder the longer you have it on" - that does not sound normal to me, especially if he was using a CPAP. A CPAP operates at one constant pressure, so there are not pressure changes over the time period that it's used. My experience with CPAP is that it should not get noisier the longer it runs. Therefore it could be that there is a problem with the device. Are you working with a DME? I would suggest that you contact them and have the machine checked.

Guest MJ

My husband is a mouth breather and can't really breathe through his nose much even during the day.  One of his nostrils is blocked at all times, which side varies.  His jaw is also narrow.  We don't expect the surgery to cure the problem entirely, but I think it will make breathing easier.   I can't imagine not breathing through my nose, but this is all he's ever known.

I've asked for help with how to post the studies and even e-mailed them to someone to try to help me do it, but she couldn't figure it out either.  The apnea/hypopnea episodes were much worse on his back.

I think the machine sounded louder because his sinuses became more blocked as the night went on.  Mostly, I think we were hearing the air leaking out because it had nowhere to go with the sinuses closed.  It was better when he used the mask that covered the nose AND mouth because at least the air had somewhere to go when the sinuses were blocked.   Unfortunately, he didn't feel any more rested with that mask either.  He definitely tolerated the nose one better; however, it can't blow air into closed sinuses.  We actually wanted to try running the machine for 6-8 hours during the day and then seeing if it got louder, but we were afraid it would screw up the data on the card.  When we had the A-pap, the data showed a LOT of leakage with the nose masks.

Janet K wrote:

My husband is a mouth breather and can't really breathe through his nose much even during the day.  One of his nostrils is blocked at all times, which side varies.  His jaw is also narrow.  We don't expect the surgery to cure the problem entirely, but I think it will make breathing easier.   I can't imagine not breathing through my nose, but this is all he's ever known.

Hi Janet,

The nasal/sinus issues sound very uncomfortable. Treating medical conditions can be compared to peeling an onion – sometimes there are multiple issues that have to be dealt with one layer at a time.  It does sound like he should be evaluated for this as it there could be several issues involved that need to be sorted out (deviated septum, sinus infections, allergies, etc).  And it also does sound like it plays a role in making it difficult for him to use PAP treatment.

In the meantime, has your husband tried sinus irrigation?  This is explained in the thread Sinus Irrigation How-To Update which is a permanent “sticky” thread located at the top of the Help Forum. See http://www.apneasupport.org/about3572.html
Sinus irrigation is recommended by some ENTs, and many people with sinus issues in that thread definitely recommend it.

Humidity can play a role in sinus congestion. Does he feel any difference in his sinuses after taking a hot shower? Sometimes the moist air can loosen congestion. Also, consider if the indoor humidity is playing a role. Seasonal and indoor heating/air conditioning can affect sinuses. A room humidifier might help.

I will try to get back to you with the other issues you mentioned.

Guest MJ

Actually the air has been VERY dry (since it's been BITTER cold -20 with wind chills) so we've been sealed up and running the heat (gas-forced hot air without a humidifier).  He has been much better than in the summer when it is humid.  When he does get a cold, the snoring and apnea is horrific.  I agree about the onion thing, but unfortunately, our "Sleep Doctor" only had one solution.  We had to seek out the ENT doc ourselves (and wait two months to get seen).  He hasn't had any sinus infections since last year at this time.  I think he has allergies, but where we live is nicknamed "Sinus Valley," so we all have some issues there.   We just had a big snowstorm and freezing rain last night, so it's wet outside, but dry inside, which causes my sinuses to bleed.  He doesn't have this trouble.

Hi Janet,

“Sinus Valley” ! and -20 with wind chills!!  It sounds like the climate and indoor heating can be playing a role in causing -or- worsening the nasal/sinus issues. I would consider experimenting with both sinus irrigation and a room humidifier.

Does he do sinus irrigation on a regular basis?

Can you get a humidifier? There are humidifiers that work well to humidify one room, for example, the bedroom. Unless you are planning to move, this would be a good investment. It sounds like humidifying the bedroom at night might help you, too, since you are having sinus bleeding.

Guest MJ

I don't know where Janet lives so I don't know if her -20 is Celsius or Fahrenheit.  In any case, that's very cold and when it's very cold, it is difficult to humidify a house adequately and often impossible.  In any case, Janet says her husband does not seem to be bothered by the dry air.

Frances wrote:

I don't know where Janet lives so I don't know if her -20 is Celsius or Fahrenheit.  In any case, that's very cold and when it's very cold, it is difficult to humidify a house adequately and often impossible.  In any case, Janet says her husband does not seem to be bothered by the dry air.

Hi Frances,

Your input is welcome, and perhaps I wasn't clear. I am suggesting that a humidifier can work quite well for one room. It can be especially helpful to use a humidifier at night in the bedroom. I know several people who do this during the winter season when using indoor heated dry air. She wrote "gas-forced hot air without a humidifier."

She has written that her husband "can't really breathe through his nose much even during the day. One of his nostrils is blocked at all times, which side varies." Too dry air is often associated with sinus problems, including swollen membranes and congestion. So that's why I thought increasing the humidity might help him. It also may help with sinus bleeding, which is what she is reporting.

Regards,
Guest MJ

MJ, I don't want to say that adding humidity to the air in a house in winter is a bad idea because it's not.  However, if it very cold outside it can be difficult to do and sometimes it is not even a good idea to try too hard, depending on the house one lives in and its structure.  If the house is a modern one which is well insulated and well sealed and has an independent air supply for the furnace, and especially if there is a heat recovery ventilator, then it is unlikely to be a problem.  If it is not well insulated and sealed it can be very difficult to keep up to the air leakage.  However, the biggest problem which may not be obvious until it is too late, is that the water vapour may condense in hidden places and cause structural damage and mould.  I recall that Consumer Reports some years ago said that one should not try to raise the relative humidity above 35% when it is very cold and the house is not well sealed.

I won't be posting or reading any more messags.   I am finding the responses to be very one-sided, as if CPAP has to be the answer to everything.  My
real issue w/ machines goes back to what I said in one of my first messages...It wasn't helping, and in fact, I saw him worsening while we tried to deal w/ the difficult adjustment to cpap.  Now I realize that was from other serious medical problems left undiagnosed (as in the onion analogy..many layers that were not addressed first as they should have been).  
Since many people have told me on this site that the treatment of sleep apnea is in its infancy, I find it difficult to absorb that so many responses are of the "buck up...it's the only way" thought.  There is never one answer to anything.