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CPAP is killing my family life.
The last two years my family and I have been to hell and back due to my husbands snoring and now a CPAP machine. Don't get me wrong I know he has to have the machine to keep him alive while HE sleeps, but the machine is noisy (Philips Remstar Pro C-flex +), it has night lights that are so bright I can and do most nights read a book by them, I'm not sure if the lights can be turned off, but my husband either won't or can't, really helps me to sleep, then there is the mouth breathing or the hair dryer in the middle of the night, his mouth can be open for half an hour or more even though I shut his mouth, it falls back open, let me add the puuh sound that comes next. I go and sleep in the spare room to get some sleep, only for him to follow me, but without the machine so I then have to listen to him snore the rest of the night. My children can't sleep near him due to the snoring, they can handle the noise of the machine ie it's white noise or humming whichever way you want to refer to it, but they can't handle the break throug snoring, mouth breathing or puuh that eventually comes through the night. As I have already said I know he needs this machine to help him breathe and stay alive, but truly does it have to come at the expense of our children and myself, why was there no alternative given other than a CPAP machine, surely there are alternatives? I spent eighteen months sleeping on a couch because of the snoring, if I tried to get him to roll over he either didn't hear me or would yell at me that he had rolled over, if I was lucky enough to get some sleep in the bed he would twitch and flail his arms so badly that occasionally I would get a black eye, one night I even had my nose broken by him! I have been told by my doctor that I need to learn to live with the machine, but do I have to do this at my expense, I have developed ventricular ectopy because of my ongoing sleeps problem that this has caused, I have the same amount of children that my husband does,(3) I work the same hours as he does (between 70 & 80 a week it's our own business) I cook, clean the house, do the washing & ironing, running the kids to school and picking them up all on about one hours sleep a night. Now before any one tries to tell me to wear ear plugs at night so I can sleep I only have 10% hearing and need to be able to hear the kids etc at night, I don't believe I am being selfish in this situation so much as I am asking for a bit of equality. I don't want to break up my marriage we were childhood sweethearts (I've known him since I was 8 I'm now 46) we have been married for nearly 24 years, but I'm truly at my wits end. If any one has some sensible ideas I would like to hear them, if you are simply going to tell me to get over myself don't bother to post a reply as I have tried everything!
Views: 5041
Replies to This Discussion
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Permalink Reply by Mary Z on
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D.M.H. the help is out there, unfortunately you did not find providers willing to help you. The only way to access your data is to learn from the forum. The docs like to keep this to themselves so they will be the ones making any changes. CPAP is a prescription item and the pressure is prescribed by the doctor. It's really not the place of the equipment provider to give you that information, though they should be giving you more support. Your husband might want to get motivated to follow his own treatment. Some people are content to just use the machine without understanding the basics of treatment. Perhaps he could get a new doc, one who would involve you more in his care. The ResMed website (www.resmed.com) has information for patients and families. Unfortunately some people do lose some of the intimacy they formerly enjoyed in bed together. No one could know- your husbands techs or the equipment provider- the impact CPAP would have on your relationship. You could be the one to tell them so they might know to warn other couples. You do a lot of good for other couples when you post to the forum about your problems. There is no easy fix. Is your husband concerned at all about the effect CPAP has on your life together?
I have been on CPAP for 3 1/2 years and find my mate and I easily work around intimacy issues. I have been fortunate to find needed support on this forum and from my DME. I'm sorry you haven't had the same experience. It really sounds like you need a doc who will be involved in your situation. Just seeing sleep techs during his study is not sufficient.
There is plenty of reputable information on the web about sleep apnea- just look at the source of the information and decide if you can trust them.
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Permalink Reply by Chris H on
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Hi DMH, The American Sleep Apnea Association (ASAA) Sleepapnea.org is a good resource. Sounds like your husband went to an independant clinic that takes the study info and has a doctor some place else read the study. Is their a university hospital or a listing for a board certified sleep doctor anywhere near you? We have A.w.a.k.e meetings I do not know if you have them where you live. With out the propper treatment your husband wont be excluded from the comorbities. His sleep deprived oxygen starved mind is making him cranky do not take it to heart.....Courage strength to you,Chris
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D.M.H. said:Chris, please tell me where the help is I can't find any! He never saw a sleep doctor only a tech on the nights he went for his sleep studies, in all the years we have been together I hadn't heard him gasp for breath or struggle to breathe this whole diagnosis has come out of left field for me, I don't know who to turn to for help, I'm lost in a world that seems to want to exclude me, the only information that I have on sleep apnea or cpap is what I have been able to learn off the net, and then I don't know if it's correct. I'm lost in the world at the moment and can't work out what is right or where I fit in anymore.
Chris H said:Hi D.M.H , As Banyon said these issues can be worked on. Proper treatment and fitting equipment
make all the difference. Your medical goods dealer should be helping you,your sleep doctor should be made aware. Help is out there. I hope you seek it out.Good Sleep,Chris
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Search for A.W.A.K.E. with the American Sleep Apnea Association for a list of meetings. I could not copy the link.
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At least we are talking now... He has agreed to see an E.N.T. and get some more advice on his condition, the clinic that he has been going to has been of no assistance whatsoever, never seen a doctor, never been given the opportunity of seeing a doctor, it was the clinic that told him if I couldn't make the adjustment then he had to make a big decision as his health was more important than mine, our families, or our marriage, we have been to many hours of councelling to over come the damage that these people have done.
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Permalink Reply by Banyon on
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That is good that he will see an ENT. The ENT at a bare minimum should do a laryngoscopy in the office on the first visit. This is an examination of the nasal passages and vocal cords and looks for turbinate enlargement and inflammation and swelling of the vocal cords. The ENT will also look at the size and condition of the tonsils, adenoids, tongue and soft palate.
If the ENT doesn't do the larygoscopy on the first visit I would seriously question that he is not the right ENT for a sleep apnea patient.
If the ENT immediately recommends surgery let us know what surgery he is recommend.
I would agree with some surgeries but disagree that UPPP is appropriate at this time. Remember your husband has not experienced a proper CPAP therapy yet - he has been using a nasal mask and mouthbreathing. It is known that this will not deliver proper therapy!!!!
Please update this thread after the ENT visit. All decisions will be your husband's decisions but we can give you some information and suggestions.
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D.M.H., you said last month you had just had a sleep study. How were the results?
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Hi D.M.H. , Make a list of questions for the doctor .It is easier to look at your list than remember it all.
Good Sleep,Chris
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Mary, the results have come back as moderate to severe obstructive sleep apnea. My AHI average is 29.6; however this study was done through the same clinic as my husbands, I am awaiting on another sleep test to be undertaken through another group, referred by my E.N.T., with full access to sleep doctors as I am not convinced the other group are completely ethical... I have heard some horror stories about this company and do not trust them, after my own personal experience with how they treat patients and their lack of care about anything and everything apart from the dollars that they derive from sales, I am sorry if this sounds harsh, it's quite possibly meant to be that way with all the damage that they have done. I truly don't even know the full explanation of the sleep test results as they have not been explained to me, all I received was a small print out with some numbers, my own primary care doctor has been on vacation for over a month now so I haven't been able to talk with him about it yet.
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Have you looked into Provent Sleep Apnea Therapy? It's a relatively new treatment for OSA that doesn't use a machine. I can't vouch for the effectiveness of this device, and I don't know if it would work for you or your husband, but you might want to look into it and talk to your sleep doctor about it.
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Thanks Chris, I however do not even know what questions I need to ask, my thought process is very clouded at the moment, I have no idea what is right or wrong at this point in time.
Chris H said:Hi D.M.H. , Make a list of questions for the doctor .It is easier to look at your list than remember it all.
Good Sleep,Chris
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Tom said:Have you looked into Provent Sleep Apnea Therapy? It's a relatively new treatment for OSA that doesn't use a machine. I can't vouch for the effectiveness of this device, and I don't know if it would work for you or your husband, but you might want to look into it and talk to your sleep doctor about it.
I wonder why you would even suggest this to someone who has not given CPAP an educated and committed trial???
You seem to know nothing about Provent except the company's website address.
Read the medical studies that Provent has links to on their website. They show that Provent does not work at all for about 50% of the patients. It works to varying degrees (many get less than acceptable therapy IMO) in the other half.
CPAP is the first line of treatment. It needs to be given a committed trial by an educated patient who has resources to help in the process. No need to confuse someone who has not had a decent trial period using CPAP by suggesting they look into Provent.
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