How long will it take to get used to the CPAP

This section is for spouses of Apnea Patients to provide mutual support.


  • Site Supporter

How long will it take to get used to the CPAP

Postby NancyL » Fri Jan 23, 2009 3:16 pm

My husband was finally diagnosed with sleep apnea, severe sleep apnea. He is aroused over 60 times an hour. He's been sick and lethargic for the past 3 years and could sleep 14 hours and never ever feel refreshed. One night at the sleep center with the CPAP and I saw my old husband again. WOW - what a difference. But he said he didn't really sleep well due to the noisy room next door, yet he felt GREAT all day and rocked on an interview. Some of you have said it takes a long time to adjust? How long? What can I expect? How will it affect me?

I gotta tell you all, I"m kind of jealous of his excitement. I've lived with a cranky, tired, and lethargic man for 3 years. He had surgery 18 months ago for something else and has yet to spring back to life. This should help him enormously. He's had some other job challenges, and has just landed a new and exciting job. But the job will demand far more time and intensity. He won't be able to skate at all.

I'm so relieved. I wish there was a way to go back to all our past doctors and kick them where it counts. Over and over, we'd tell them he was way too tired for someone his age. We'd tell them he was way too tired after sleeping 10 - 14 hours. He was ALWAY tired. We'd tell them he had no energy and if he did exert himself he was even worse the next day. Most of the past docs just wanted to prescribe anti anxiety or anti depressant drugs. What further amazes me is that a nurse friend of mine said that the docs don't like to recommend the study because most people won't wear the CPAP anyway. WTF? That just seems ridiculous. Is it true?

We are totally grateful to the Virginia Mason Clinic here in our town. On the first visit, the doctor HEARD us complain about how tired he was and suggested a sleep study. We are so grateful. This leads to the question of why the other doctors never even considered it. He'd been seen by 5 MD's, a 2 surgeons. The poor guy has been through the wringer.

Anyway, I"m most grateful to know you guys are here. AS I listen to my husband yakking with excitement to all his work friends, I'm feeling like I need support for all I've been through to just get him this far. I'm tired too. You know?
Any advice is welcomed.
Thanks.
Nancy
NancyL
 
Posts: 28
Joined: Thu Jan 22, 2009 8:10 pm

Postby ApneaKiwi » Fri Jan 23, 2009 3:37 pm

Yes! I do understand exactly what you are saying. (I'm not a spouse but I have been through a similar ordeal as the patient).

The way sleep apnea is ignored by so many doctors is a travesty. I fully intend, as soon as I am well enough, to write to every doctor I can think of who ignored my symptoms, to at least try to improve the care of other patients. Even after I fell asleep at the wheel and had a minor auto accident, one of them still did not think I had sleep apnea and tried to direct me down the insomnia path. When I told this to my sleep doctor his eyes nearly popped out, because driving issues are one of the most obvious signs (and I had almost all the other signs too).

Organisations like the ASAA are trying to educate the medical profession and the public through awareness raising activities, among other things. You may want to join, as I'm sure they could do with all the support they can get. I understand members receive a free bracelet-type thing that emergency workers can use to get information on your husband's disorder and treatment, should he ever be in an emergency and need it. If he has any future surgery, read the pages on the ASAA website about hospital care, so he can minimise the risk of breathing problems afterwards. If anyone else in the family has excessive daytime sleepiness, they may want to find out more, as sleep apnea can run in families.

Anyway, welcome to you both, and if either of you would like to troubleshoot any therapy problems, just ask. There is a wealth of knowledge and support here.
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45
User avatar
ApneaKiwi
 
Posts: 1014
Joined: Fri Jan 02, 2009 3:08 am
Location: New Zealand

Postby ApneaKiwi » Fri Jan 23, 2009 3:46 pm

And to answer your main question, about how long it takes - everyone will tell you it's impossible to know. Since that's not very helpful (lol) I will say it can take a few weeks to a few months. If OSA is long-standing or severe or there are other issues or the diagnosis and treatment aren't optimal, then it is more towards months than weeks, for sure. Some people take even longer. Depending on the type of machine he has, he can monitor his progress because many machines record data. He can also monitor himself by his symptoms. The Epworth Sleepiness Scale is one tool he can use - lots of copies on the web if you google it.

I imagine that his therapy will only be a minor inconvenience to you as you get used to the (rather low) hum of the machine and the airflow. Most people find it is so much better than listening to snoring, gasping, and putting up with him having night sweats and using the bathroom several times a night, not to mention the worry that he is going to stop breathing for good. If he has been having limb movements (like restless legs) that may improve too. If he is using the right mask for him and it's fitted correctly then the noise is minimal. I can't really comment on any other impacts on spouses as I just don't know. Others will no doubt come in and answer.
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45
User avatar
ApneaKiwi
 
Posts: 1014
Joined: Fri Jan 02, 2009 3:08 am
Location: New Zealand

How long will it take to get used to the CPAP

Postby NancyL » Fri Jan 23, 2009 4:52 pm

Kiwi,
thanks a bunch. That enlightens me a bit. I'm so unconsciously listening to all the sounds you've described, that I'm amazed we didn't catch this sooner.
Great idea on the hospital issues. If he ever has to go again, I need to be armed with this info.
Months? Yikes. I guess it's nothing compared to the alternative.
:)
Nancy
NancyL
 
Posts: 28
Joined: Thu Jan 22, 2009 8:10 pm

Re: How long will it take to get used to the CPAP

Postby ApneaKiwi » Fri Jan 23, 2009 5:29 pm

NancyL wrote:Kiwi,
thanks a bunch. That enlightens me a bit. I'm so unconsciously listening to all the sounds you've described, that I'm amazed we didn't catch this sooner.
Great idea on the hospital issues. If he ever has to go again, I need to be armed with this info.
Months? Yikes. I guess it's nothing compared to the alternative.
:)
Nancy


Like most of us, you weren't to know those sounds meant OSA. If the doctors did their job properly, they would ask further questions of anyone who mentioned a couple of the risk factors, signs or symptoms.

It's better to be honest with you and say it could take months, than for you to think it will only take a week. I was told it takes 1-14 days. Well, I am at around day 50 now and still waiting. (In my case it's just a delay in getting the right kind of sleep study done). Each symptom improves one by one over time. One symptom that often improves first is the getting up to the bathroom at night. But everyone is different of course. And you are so right, the alternative doesn't bear thinking about. I feel very blessed that I have been diagnosed, before developing heart disease and diabetes or having a stroke.

Each day I check my machine and it tells me my AHI for the night before. (AHI is the Apnea-Hypopnea Index, one measure of how many times you are having sleep disordered breathing episodes per hour). Over the last 3 weeks or so, it has been coming down one point every one to three nights and in total I have gone from an AHI of 45 to 16. I am feeling ALOT better, but still have some ways to go. I recommend getting a machine that allows you to monitor in this and other ways.
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45
User avatar
ApneaKiwi
 
Posts: 1014
Joined: Fri Jan 02, 2009 3:08 am
Location: New Zealand

Postby Frances » Sat Jan 24, 2009 11:21 pm

Nancy, it didn't take very long for my husband to get used to using the CPAP machine. That's not to say there were no problems, but he persevered because he knew from his titration study how much better he felt when using it. If a person can keep the mask on all night, or nearly all night, that's more than half the battle.

Getting the mask correctly adjusted is very important. Try to find a supplier who is knowledgable about fitting. In the meantime, look at the stickies for help and, for goodness sake, come here and ask all the questions you want.
Frances
 
Posts: 984
Joined: Tue Jan 17, 2006 11:41 pm
Location: Toronto, Ontario, Canada

getting used to CPAP

Postby NancyL » Sat Jan 31, 2009 4:12 pm

Do the suppliers tend to only provide one type of machine?
NancyL
 
Posts: 28
Joined: Thu Jan 22, 2009 8:10 pm

Postby ApneaKiwi » Sat Jan 31, 2009 5:18 pm

It depends. Sometimes they can make bigger profit margins by supplying one brand (and there are usually a few options within each of the bigger brands). It pays to ask your insurer if they allow more than one choice of DME, and then you can shop around and even haggle with the DME. How much you want to do this depends on your type of insurance and out of pocket costs. Getting good service and support is really important. Alot of people start out with a DME so they can try out different machines and masks, then once they know what they like, they order replacement masks etc online and save alot of money that way.

there is a sticky post on the CPAP machines and masks board that has lots of details about the different brands of gear. the big 3 are Resmed, Respironics, and Fisher & Paykel. each has its own pros and cons, like anything. its a good idea not to commit yourselves to a major investment decision until you've checked that the machine is fully data capable (for treatment monitoring and adjustment). certain members here can look at any model name from the big 3 and tell you yes or no. some DMEs will try to sell you a 'data capable machine' but it only records compliance ie whether the hours the machine is used. we are talking about the AHI results and the mask leak rates which are really important. apart from that issue, the machines are much the same really. except for the occasional one that sounds like a kitchen food processor!
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45
User avatar
ApneaKiwi
 
Posts: 1014
Joined: Fri Jan 02, 2009 3:08 am
Location: New Zealand

Harold got replaced!

Postby RamblinLamb » Sun Feb 08, 2009 3:02 pm

Hey Kiwi,

I went to my cpap provider and replaced Harold! I now have a ResMed EPR Elite II and I replaced my comfort gel full face mask with a comfort gel nasal mask. The first night I slept until 6am with it and that is 2 hours longer than my one night record of 4am. Most night previously were about 1am on average.

My cpap tech thinks the water that is accumulating in my mask isn't so much drool (yucky I know but I can't prevent that....) as condensation. So I turned off the humidifier and that left me with a sore throat. So now I'll ramp it up one notch at a time each night to find the sweet spot. The nasal mask is MUCH better! More comfortable so I am more prone to wear it for the long haul.

This new CAP from ResMed is nearly silent and much smaller than the beast that was Harold the Respironics device.
RamblinLamb
 
Posts: 5
Joined: Sat Jan 31, 2009 2:22 pm

silent? hah

Postby NancyL » Sun Feb 08, 2009 4:38 pm

If it's so silent why did your wife end up on the couch?
Actually, he turned his humidifier off, and then I got to hear raspy breathing.
And in reality, it was wonderfully quiet the first night. So it must be the humidifier.
Yay, RamblinlLamb! Good job on following through instead of giving up.
NancyL
 
Posts: 28
Joined: Thu Jan 22, 2009 8:10 pm

Postby snorezzalot » Mon Feb 09, 2009 12:51 am

To RamblinLamb: We, too, had a problem with excessive moisture in the mask and tubing...I was worried that my CPAP-user spouse would drown! We were told to insulate the hose if the room was cold (which it isn't). Then we remembered that when we travel, the CPAP machine sits on the floor and there is never any excessive moisture built up. So...we put the CPAP on the floor at the end of our bed (had to add another length of hose via a connector)...and it works! We were told that the CPAP unit should be at least 6 inches below the patient's head...but that wasn't far enough so the floor is the ticket.

Glad to read that you dumped Harold (I do love the name...much better than the four-letter name I call my spouse's new Remstar M series CPAP unit!) for a Resmed Elite II. I, too, am negotiating with my medical insurer, who got dinged by my sleep clinic (and they won't replace that #$^% Remstar since they do not handle any other brand) for the awful M series unit, to cover a new Resmed Elite II. I presume you are very happy with the new Resmed unit??
User avatar
snorezzalot
 
Posts: 9
Joined: Sun Feb 08, 2009 11:49 pm
Location: Portland, OR

Re: Harold got replaced!

Postby ApneaKiwi » Mon Feb 09, 2009 6:02 am

Hi there Ramblin'

Harold got the news that he was surplus to requirements, huh? Great for you! I see you are sleeping though the night better - that is really good. I use a Resmed Autoset Spirit II with a humidifier too. I have a hose cover (tube wrap) and it prevents condensation. I've found it's the most effective way. Also, I change the humidifier level up or half a notch as needed. Most people find that the sweet spot changes at least a couple of times a year with the seasons. I have also switched from a full face mask to a nasal mask for more effectiveness and comfort. Hey, let me know if you get any nasal congestion issues because I can give you some tips for that. A nasal mask can be a real pain if you have a cold apparently.

Keep up the good work, both of you! Well done.

Kiwi


RamblinLamb wrote:Hey Kiwi,

I went to my cpap provider and replaced Harold! I now have a ResMed EPR Elite II and I replaced my comfort gel full face mask with a comfort gel nasal mask. The first night I slept until 6am with it and that is 2 hours longer than my one night record of 4am. Most night previously were about 1am on average.

My cpap tech thinks the water that is accumulating in my mask isn't so much drool (yucky I know but I can't prevent that....) as condensation. So I turned off the humidifier and that left me with a sore throat. So now I'll ramp it up one notch at a time each night to find the sweet spot. The nasal mask is MUCH better! More comfortable so I am more prone to wear it for the long haul.

This new CAP from ResMed is nearly silent and much smaller than the beast that was Harold the Respironics device.
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45
User avatar
ApneaKiwi
 
Posts: 1014
Joined: Fri Jan 02, 2009 3:08 am
Location: New Zealand

Can a night be amazing?

Postby RamblinLamb » Mon Feb 09, 2009 11:40 am

Hey Kiwi et al,

Last night was CPAP perfect! I set the humidifier to 1 and slept like a baby! No leaks at all from the comfort gel nasal mask and the ResMed machine is flawless! I too have the tube cover and it seems to work great too!

Finally I am achieving my sleep goals!! WOOOOOOOOOOOOOOOOOOOOOOOOOOOT!!!

=D> =D> =D> =D> =D> =D>
RamblinLamb
 
Posts: 5
Joined: Sat Jan 31, 2009 2:22 pm

What a difference a night's sleep makes

Postby NancyL » Mon Feb 09, 2009 11:59 am

No kidding! RamblinLamb's only annoyance was his wife who got up to let the cat out and came back to announce it was snowing. (that is me)

I agree with husband, this machine is much better. It's noisier when he adjusts it, but it's really quiet. Grateful for all your support. NancyL
NancyL
 
Posts: 28
Joined: Thu Jan 22, 2009 8:10 pm

Re: How long will it take to get used to the CPAP

Postby Ryan.T » Thu Feb 04, 2010 4:22 am

NancyL wrote:My husband was finally diagnosed with sleep apnea, severe sleep apnea. He is aroused over 60 times an hour. He's been sick and lethargic for the past 3 years and could sleep 14 hours and never ever feel refreshed. One night at the sleep center with the CPAP and I saw my old husband again. WOW - what a difference. But he said he didn't really sleep well due to the noisy room next door, yet he felt GREAT all day and rocked on an interview. Some of you have said it takes a long time to adjust? How long? What can I expect? How will it affect me?

I gotta tell you all, I"m kind of jealous of his excitement. I've lived with a cranky, tired, and lethargic man for 3 years. He had surgery 18 months ago for something else and has yet to spring back to life. This should help him enormously. He's had some other job challenges, and has just landed a new and exciting job. But the job will demand far more time and intensity. He won't be able to skate at all.

I'm so relieved. I wish there was a way to go back to all our past doctors and kick them where it counts. Over and over, we'd tell them he was way too tired for someone his age. We'd tell them he was way too tired after sleeping 10 - 14 hours. He was ALWAY tired. We'd tell them he had no energy and if he did exert himself he was even worse the next day. Most of the past docs just wanted to prescribe anti anxiety or anti depressant drugs. What further amazes me is that a nurse friend of mine said that the docs don't like to recommend the study because most people won't wear the CPAP anyway. WTF? That just seems ridiculous. Is it true?

We are totally grateful to the Virginia Mason Clinic here in our town. On the first visit, the doctor HEARD us complain about how tired he was and suggested a sleep study. We are so grateful. This leads to the question of why the other doctors never even considered it. He'd been seen by 5 MD's, a 2 surgeons. The poor guy has been through the wringer.

Anyway, I"m most grateful to know you guys are here. AS I listen to my husband yakking with excitement to all his work friends, I'm feeling like I need support for all I've been through to just get him this far. I'm tired too. You know?
Any advice is welcomed.
Thanks.
Nancy


Wow, jeez, these doctors have no idea how much we suffer over the years without a CPAP machine. who are they kidding? You might really want to kick them on you know where, that will give you all the support you need :) just kidding.
Ryan.T
 
Posts: 5
Joined: Thu Feb 04, 2010 4:02 am

Next


  • Site Supporter

  • Similar topics
    Replies
    Views
    Author

Return to A Place for Spouses

Who is online

Users browsing this forum: No registered users and 2 guests