I'm a newbie to all of this.  I'm creating a new post as was recommended but am posting my story so far.  My husband of 17 years went for a sleep study a few weeks ago and was found to have apnea (which wasn't a surprise to ME).  He actually slept really well during the initial sleep study, but rarely went into a deep sleep because he was waking himself into a less deep sleep when his breathing apnead/snoring/etc.  He did stop breathing for over a minute.  He went back for a second study with a CPAP nose thing.  He hardly slept at all and was absolutely exhausted the next day.  I'm really disappointed and feel like the whole thing was a disaster.   We meet with the doctor tomorrow.  It seems like there are inconsistencies on the data we got too, but hopefully the doctor appointment will clear that up.  The bridge of my husband's nose is still irritated and it's been 4 days since the study.  It seems like the solutions to apnea are these devices that look like what Amelia Earhart wore.  It's 2007, for God's sake.  Is this really the best we can do for these poor people????  I am a little freaked out by the look of the thing too.    My husband wasn't tired before the study, but snored loudly.  I really don't know what to do.  The solution is worse than the problem.  Can anyone help me?

 
Tue Jul 10, 2007 12:10 pm    
 
Frances
Joined: 17 Jan 2006
Posts: 395
Location: Toronto, Ontario, Canada

  
  
Janet, welcome to the site.  It's hard to know where to begin in answer to your posting but I would like to suggest first that you should start your own thread.  Coming at the end of a thread tends to get you ignored.  Probably you would be better off using the main forum because you will get the most attention there.

And, yes, this is the best we can do for obstructive sleep apnea sufferers and, once one gets things adjusted properly, it works very well.

 Do you have copies of the results of the studies?  If you haven't, you should get copies of  both, including the graphs.  Sometimes the doctor or the clinic are reluctant to give them to you but it is your right to have them so insist.  Once you have them, post them and we will help you understand them.

If your husband wasn't tired before the first study, what prompted him to have one? Because, from what you have said, he definitely has obstructive sleep apnea and would benefit from using a CPAP machine and mask.

My own husband has been using a machine for a year and a half.  He accepted it right away because his titration study (the one during which you wear the mask) showed him just how much better it made him feel.  I didn't have a problem with his using it because it eliminated his snoring which had been driving me nuts for years.  But I felt that I could never do it myself.  Then I began having sleeping problems of my own and found that I was more than willing to go that route if it would give me better sleep.  Unfortunately, it turned out not to be the problem and I'm still trying to find the answer.

I know this whole thing has come as a shock to you both and it is going to take time to come to terms with it.  That's okay - it happens to a lot of people and sooner or later, they do come to terms with it. Start by reading as much as you can about the problem and ask us all the questions you want.  Once it becomes more familiar, I think you will find it easier to accept but it will be a slow process so please don't despair.

 
Tue Jul 10, 2007 9:59 pm    
 
Frances


Joined: 17 Jan 2006
Posts: 395
Location: Toronto, Ontario, Canada

  
  
Janet, I should have added this to my first answer.  Don't rush into getting a machine and mask before you get comfortable with the whole idea and before you know what it is all about.  In this case, knowledge is power.

Also, find out what your insurance covers and how it works before you buy anything.  And research the equipment suppliers that you can use.  

And the sore nose that your husband had (has?) is a sign of a poorly fitted mask.  Shame on the sleep clinic for doing such a poor job.

 
Tue Jul 10, 2007 10:11 pm    
 
Janet K


Joined: 10 Jul 2007
Posts: 2


  
    
Frances, thanks so much for your reply.  It is nice to know that people understand what we are going through.  Yes, my husband has obstructive apnea.  I will post his results of both studies after I get a copy of the ones today from the study with the mask (7/6) where he didn't sleep much at all.  I am the one that started all of this (which is why I feel a little guilty) because his snoring has gotten so bad that he's been sleeping in the guest bedroom about six months--because I just couldn't take it any more.  We live in a small town, so I don't have a lot of faith in the doctors here and the lack of technology knowledge.  It seems like you go for a study, they say you have apnea, they hand you a device, bye.  I've heard that only 40% of people continue to use the masks, and I can certainly see why.  I have seen something on the palatial implants, which sound SOOOO much better than this Darth Vador device.  I'm going to ask about them today, but honestly expect that the doctor will have little to no knowledge of them.  (Yes, I'm feeling pessimistic.)  I do blame myself for not going to the doctor appointment after the first study because perhaps I'd know more, but my husband doesn't seem to know much and he was THERE.  I'll try to start a new post at that time too, but this is the first time I've ever done anything like this.   Thanks again for your response; it really means a lot to me.

------

I just got back from the doctor (pulmonologist) with my husband and I'm really MAD.  The second sleep study was terrible!!  Not only was he totally exhausted the next day, he snored and actually stopped breathing for 80 seconds!!  Looking at the results, my husband snored 40.8% of the time during the first study (without a mask) and snored 46% of the time WITH the mask.  The old-man doctor wants him to get a mask and continue.  I told him I thought the sleep study was a TOTAL FAILURE.  Why would we continue to try something that didn't work????????  During my husband's initial sleep study, he actually slept well but never went into a deep sleep. He didn't go into a deep sleep during the study with the mask either, so we haven't solved a thing.  I have the results scanned and ready to post for other people's opinions on what we should do but I can't figure out how to put them on here.  I asked the doctor about other options like pillar implants and he just said "well, then you'll have to see an ENT."  He didn't even have the right tools to be able to look in my husband's nose or anything.   It seems like there should be a general doctor who helps decide what is best for the person.  If you go to a pulmonary doc, of course he'll give you a mask.  If you go to a ENT, he'll give you something else.  If you go to a dentist, he'll give you something else, etc.  Who decides who you SHOULD be seeing????????

I don't think the mask will work for my husband because he is really uncomfortable sleeping in one position and (let's be honest here) it's hard to move around with the mask on.  He stayed on his back almost the whole time and felt like all his muscles were cramping.  He has tons of PLM's on both studies.  

I asked if after we use the mask for a while, do we have another study to see if he does get into a deep sleep and the doctor said NO.  I asked how we would know it was working and he said that my husband wouldn't feel tired any more.  I said he isn't tired.  The doctor opened the file and said "well, he answered yes to feeling tired when reading and feeling tired when driving for long times"  I'm thinking, doesn't EVERYONE?  These questions seemed so leading.  My husband goes to bed AFTER me, watches sports until late without falling asleep, gets up earlier than me.  I'll tell you who is tired, ME!!!  I think I'm going to go cry for a bit now.  Please tell me how to post a PDF of the visit to this site.

I think I'm going to schedule an appointment with an ENT.  I need HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Janet K wrote:

It seems like there should be a general doctor who helps decide what is best for the person ... Who decides who you SHOULD be seeing????????

A patient with a sleep disorder [and it sounds like your husband may have two, at least] should see a certified sleep doctor, period. Beyond that, it doesn't matter so much whether that person's primary specialization is pulmnology or otolaryngology or neurology or internal medicine.

Someone who goes into a deep sleep should not move around--if that person doesn't have PLMs. If your husband has PLMD or RLS, he needs medication for that in addition to the apnea treatment. Once he is able to consistently get deep sleep, he will not be moving around in his sleep.

That said, I've not had any trouble moving around with any of my masks. There are masks that attach to the machine in different ways and also some people create some sort of holder to suspend the hose above the bed, so that the hose can slide through easily without the person getting tangled in it.

There are many masks that do not touch the bridge of the nose. Many masks look much more like the tube that patients who need oxygen wear, only slightly larger.

Your husband should indeed have a follow-up sleep study either every year or every two years, usually.

No, not everyone feels tired when reading or when driving for long periods.


_________________
Machine: Puritan-Bennett GoodKnight 420E (Auto)
Mask: OptiLife/Hybrid

Janet,

As was said, understanding his condition is most important before making any decisions.


And an understanding of the sleep study reports is important.  You need to know the AHI or RDI, which tells how many times he stopped breathing in an hour.  An AHI of 5-15 is mild; 15-30 is moderate; and 30 or more per hour is severe.  People with mild have more options of choices.  
Keep in mind, he needn't have slept long during the study to determine the severity of his condition or the pressure needed for a cpap to treat the sleep apnea.  And the use of the cpap at home is far different (and easier and better) than how it feels during a sleep study.  

And there are so many options of masks and such, but they too depend on the results of his studies.  


And if in fact the cpap is the best choice of treatment (and it is for most people with this condition) and there are still concerns about whether or not his apneas are being controlled, you might consider him getting an auto cpap.  

He should read up on all of this.  Knowledge can be helpful.


Linda


_________________
Click here for link to FAQ and topics
Click here for link to section on machines and masks

Janet, a scan is a graphic and you can't post a graphic directly.  Nor do I know how to post a PDF file.   There is a procedure for doing it that I don't know but maybe someone will explain it.

In the meantime, type in the information for us to read.

It does sound as if the titration study didn't go well but we need to know more.  Certainly, a successful titration should eliminate snoring completely.  And you don't need to sleep in one position to use a CPAP machine.  

The failure in sleep apnea is not in the nose, it is in the throat.  ENT doctors often have an interest in sleep apnea (I know of one here in Toronto who is connected to a sleep clinic) but I would guess that it is because they get so many complaints about snoring.  

By all means, see an ENT doctor if you feel the need but, at the moment, I think you are too confused by all this to make reasonable decisions.  I don't want to sound patronizing, because I know how I feel when I am patronized, but you need to calm down and learn more before you go farther.  Let's see the study results first.

I would suggest that you register which would, if nothing else, allow you to use private messaging.  I guarantee that it is harmless.

Also, let's get you on Sleep Apnea Help where I think you will get more attention.  When you post your results, post them there.  Give us the opportunity to get a handle on this mess after which we can give better advice.

Janet is already registered and can make use of the private message feature.  But I agree that posting in the Sleep Apnea Help or the Sleep Studies section is a good idea, it might get you more responses.

To post a graphic here you need to have the graphic as a URL, and you can do that by several free websites online.  I use www.photobucket.com.  You upload photos to there and use the URL address generated for it there to post here.  But if you don't do that, just type here some of the key numbers.  

But the best thing you could do is to go to our Sleep Studies section and review several of the posts and responses, that should help to explain things pretty well.  And in that section and in our FAQ section there is a link to a list of sleep study terminologies to help you know what the terms mean.


Linda


_________________
Click here for link to FAQ and topics
Click here for link to section on machines and masks

In your forum post you asked about creation of conversion to a .pdf file.  This is easily answered.  

The Adobe website currently has a free trial whereby you may receive 5 conversions.  the [http://createpdf.adobe.com/]

link is posted.  You must register.  Its not very complicated.  Good luck.[/url]

In your forum post you asked about creation of conversion to a .pdf file.  This is easily answered.  

The Adobe website currently has a free trial whereby you may receive 5 conversions.  the [http://createpdf.adobe.com/]

link is posted.  You must register.  Its not very complicated.  Good luck.[/url]

Just a quick update for now, I have a call out to the person in charge of the sleep center (who is a personal friend of a coworker) and she has agreed to give me a hour of her time to discuss the situation and hopefully answer my questions better.  My husband snored so loudly last night that he woke me from the Guest Bedroom to the Master Bedroom.  I was awake for hours afterward worrying about what to do (while he just snored away happily).  I am excited that this person will be able to help me in a much better, more detailed way on what doctors we should be seeing and explaining why my husband actually snored MORE with the mask than without.  My husband's oxygen levels are very high with and without the mask, so I really don't know if we are heading in the right direction with the mask.  The medical data is in PDF form, so again I need some direction on how to put it on the site for all to review and direct me.  Thanks to everyone for your response.  I'll let you know how the conversation goes tomorrow.  For now, we are going to hold off on the mask until at least next week.

Janet, if your husband snores while using his mask, then plainly there is something amiss.  Either his pressure is insufficient, or his mask is not fitted correctly, or maybe something else entirely.

I suggest to you again that you can copy the study information yourself into a thread.  All it takes is a little typing.

Janet, I see from looking at a pdf file of my own that there is a command for "saving as text".  If you were to save to a Notepad file, then you could highlight the text and copy it with Control C then open Post a reply and paste it there with Control V.  Try it and see if it works.

Frances, I spent a half hour trying all of this with the PDF file, and it didn't work.  I can't hand type in the data as it is about 12 pages long and I really want you folks to see the WHOLE picture .  It's a lot more than a little typing.  Can you share your e-mail with me and I'll send you the documents to post for me?  I was able to save as a text file, but they are still images.

The appointment with the Sleep Center lady is Monday, so I won't have an answer on how that went for you folks until Tuesday.  My husband's oxygen levels were high (85-90) both with and without the mask, so although he does stop breathing, he isn't oxygen deprived.  I don't think he is a good candidate for the mask because I don't think he can tolerate the lack of movement.  My husband isn't very comfortable on his back and tends to flip from side to side quite a bit.  I don't think the mask would tolerate the movement without leaking and creating abrasions.

He did have orthodontics when he was young, so we think he could tolerate a mouthpiece much easier.  Knowing that the previous night wasn't good (especially for me), he tried to sleep on his side and actually stick his tongue out a little (he said he certainly looked stupid).  We slept until about 2:30 when he was woken by a strong rainstorm.  He told me that he actually felt like it was morning at 2:30, so perhaps one of the mouthpieces would work for him.  My husband has an extremely narrow jaw (which is why he had to have a bunch of teeth out and orthodontia when he was younger) and he also tends to have nasal stuffyness year-round.  (They call the area where we live Sinus-valley.)  I am reaching out because I need someone who isn't in a certain specialty (like the pulmonary doctor we saw) who can see my husband as a whole patient and can honestly look at ALL of the options available to us, not just the ones that they have been told to SELL.   I can go into more detail on this, but the doctor strongly urged us to use a home health place that is affiliated with the hospital he works for since they pay his salary (yes, he actually SAID this).  I was really turned off and purposely picked one that was close to our house, which isn't affiliated with either hospital.  

Does anyone know who are the Certified Sleep Doctors in Broome County, NY?  I'd even be willing to travel to Syracuse or Rochester, NY if needed.  Under sleep disorders in our phone book, we have the following choices:  Shamsuddin Rana, Zia Shah, Michael Slattery, Sowbhagya L Sonthineni.  

Frances, thanks again for your response, it means so much to me to hear from you.  I honestly think I love my husband even more by going through this together with him.  

Again, the doctor files I have are PDFs already, so I don't need to convert them to PDF.  I was able to make them into JPEGs also, but still can't paste them in.  (Any tech-weenies out there to help me????)

On the initial study his AHI/Hr was 27.4.  His average Oxygen was 94.  With CPAP his AHI/Hr was .2 and his oxygen was 97.  His sleep efficiency without CPAP was 95.1% and with CDPHP only 83.7%.  

Sleep Staging %
              initial study       w/ CPAP
Stage 1     5.2                 5.5
Stage 2     73.5               78.4
Stage 3     4.6                 3.2
Stage 4     4.8                 2.9
REM         11.9                10

On the second study, the note was made that PLMs caused arousal and reduced sleep efficiency.  I asked the doctor about these and what causes them and he said he doesn't know.  It says the PLMs are isolated

With CPAP-# of PLM's 198, PLM index 34.4
without CPAP-# of PLM's 331, PLM index 50.7

Do you think he had more leg movements because of being hooked up to all that stuff, in a different bed, etc.?  What treatments are there for PLMs?  My husband is an ice hockey goalie (not his career) so I certainly wouldn't want any medicine that made his reflexes less sharp.  (I told him that he's like the dogs running in their sleep, except he's making saves.)  :)

The 2 apneas that occured in the CPAP sleep study (80 seconds long) actually occured after they turned the machine up to 7 from 5.  This doesn't make sense to me.  

I ready and willing to learn more.  Help me out folks and let me know what other data is helpful.  I was/am concerned about a couple of heart blips during the study and asked the doctor if these occured during the apnea episodes.  He said he doesn't know and it doesn't matter.  IT DOES MATTER TO ME.  Am I wrong?  Since there were only 2 Apnea episodes during the CPAP study, it should be pretty easy to determine when they occured, no?

I'll comment in your message:

Janet K wrote:

The appointment with the Sleep Center lady is Monday, so I won't have an answer on how that went for you folks until Tuesday.  My husband's oxygen levels were high (85-90) both with and without the mask, so although he does stop breathing, he isn't oxygen deprived.  
Normal oxygen levels are 95% or higher, so 85-90 is not normal, it is low.  There have been much lower, but he is oxygen deprived.

I don't think he is a good candidate for the mask because I don't think he can tolerate the lack of movement.  My husband isn't very comfortable on his back and tends to flip from side to side quite a bit.  I don't think the mask would tolerate the movement without leaking and creating abrasions.  
He won't know unless he tries.  Many of us sleep on our side and find ways to make it work.  There are pillows that help, and ways of handling the hose, plus there are different types of masks.

He did have orthodontics when he was young, so we think he could tolerate a mouthpiece much easier.  Knowing that the previous night wasn't good (especially for me), he tried to sleep on his side and actually stick his tongue out a little (he said he certainly looked stupid).  We slept until about 2:30 when he was woken by a strong rainstorm.  He told me that he actually felt like it was morning at 2:30, so perhaps one of the mouthpieces would work for him.  My husband has an extremely narrow jaw (which is why he had to have a bunch of teeth out and orthodontia when he was younger) and he also tends to have nasal stuffyness year-round.  (They call the area where we live Sinus-valley.)  I am reaching out because I need someone who isn't in a certain specialty (like the pulmonary doctor we saw) who can see my husband as a whole patient and can honestly look at ALL of the options available to us, not just the ones that they have been told to SELL.   I can go into more detail on this, but the doctor strongly urged us to use a home health place that is affiliated with the hospital he works for since they pay his salary (yes, he actually SAID this).  I was really turned off and purposely picked one that was close to our house, which isn't affiliated with either hospital.  

Does anyone know who are the Certified Sleep Doctors in Broome County, NY?  I'd even be willing to travel to Syracuse or Rochester, NY if needed.  Under sleep disorders in our phone book, we have the following choices:  Shamsuddin Rana, Zia Shah, Michael Slattery, Sowbhagya L Sonthineni.  

Frances, thanks again for your response, it means so much to me to hear from you.  I honestly think I love my husband even more by going through this together with him.  

Again, the doctor files I have are PDFs already, so I don't need to convert them to PDF.  I was able to make them into JPEGs also, but still can't paste them in.  (Any tech-weenies out there to help me????)  The only way you can post a photo is to use a URL, which can be done with several free websites, like www.photobucket.com.

On the initial study his AHI/Hr was 27.4.  This is in the upper moderate range.  Mild is 4-15; moderate is 15-30; severe is 30 or more apneas per hour.
His average Oxygen was 94.  With CPAP his AHI/Hr was .2 and his oxygen was 97.  His sleep efficiency without CPAP was 95.1% and with CDPHP only 83.7%.  

Sleep Staging %
              initial study       w/ CPAP
Stage 1     5.2                 5.5
Stage 2     73.5               78.4
Stage 3     4.6                 3.2
Stage 4     4.8                 2.9
REM         11.9                10
His delta sleep (stages 3 and 4) is low, but it could have been worse.  Some people don't even enter delta sleep; plus the REM is not bad.

On the second study, the note was made that PLMs caused arousal and reduced sleep efficiency.  I asked the doctor about these and what causes them and he said he doesn't know.  It says the PLMs are isolated

With CPAP-# of PLM's 198, PLM index 34.4
without CPAP-# of PLM's 331, PLM index 50.7

Do you think he had more leg movements because of being hooked up to all that stuff, in a different bed, etc.?  What treatments are there for PLMs?  My husband is an ice hockey goalie (not his career) so I certainly wouldn't want any medicine that made his reflexes less sharp.  (I told him that he's like the dogs running in their sleep, except he's making saves.)  :)
He should talk to a doc who specializes in such things, like Restless Leg Syndrome.  I suppose moving around in an an unusual sleeping situation could have contributed, but those PLM numbers are still high regardless.

The 2 apneas that occured in the CPAP sleep study (80 seconds long) actually occured after they turned the machine up to 7 from 5.  This doesn't make sense to me.  

I ready and willing to learn more.  Help me out folks and let me know what other data is helpful.  I was/am concerned about a couple of heart blips during the study and asked the doctor if these occured during the apnea episodes.  He said he doesn't know and it doesn't matter.  IT DOES MATTER TO ME.  Am I wrong?  Since there were only 2 Apnea episodes during the CPAP study, it should be pretty easy to determine when they occured, no?  
Yes, they can tell if they occurred during apneas.  But a doctor really needs to look at the numbers and make the determination if it's important, possibly a heart doctor.  If the summary info is of concern to the heart doctor, he might be able to get more of the graphical data.  Also, keep in mind, people with no sleep apnea can actually have a few, that's why an AHI of less than 5 an hour is considered to be normal.

Linda


_________________
Click here for link to FAQ and topics
Click here for link to section on machines and masks

Mild is 5-15. If it were 4-15, I wouldn't be paying for all my equipment out of pocket.


_________________
Machine: Puritan-Bennett GoodKnight 420E (Auto)
Mask: OptiLife/Hybrid

We met with the director of the Sleep Disorders Lab and explained our questions.  I asked her, if he was her husband, what would she recommend.  
She agreed that there is some confusion with the results and is going to do a full review of his study during the next few days and will get back to us.  In the meantime, she did recommend that we work on getting a CPAP to try to work with.  (I am surprised that we haven't heard from the medical equipment company, since it will be a week tomorrow since the doctor wrote the Rx.  Is this normal?)  I think we will also end up going to a ENT doctor just to try to figure out more on what is going on with my husband.  He has to open his mouth to breathe when just walking around.  He had a sinus infection in February, which is when his snoring and apnea really got bad, but they didn't return to normal after he got well.   Perhaps there is more going on too.  I slept much better last night myself knowing that someone is helping us and that we are on the right track.  Thanks to all who have responded so far.  I'll post again after I hear back with more from the director.

P.S.  My girlfriend went for a sleep study within the past couple of weeks and has unbelievable apnea.  She knew that she did and has had problems since she was  about 5 years old.  People in her apartment building used to complain about her snoring and friends used to wake her, being afraid she had died.  Her # of apneas per hour were 97!!  I don't even think they have a category for that (maybe called Holy !@#!).  She has actually fallen asleep driving and other things.  I can't believe she waited so long to get help.    She said they can't actually stop all of her apneas, but can really reduce the number.  Wow!