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Depression
I have only recently joined. It looks a great place. I think it has only just hit me that I will be wearing this mask with machine, for the rest of my life. I have had sleep apnoea for a few years but have only recently started treatment again, after a few years gap. It really frightens me when I read people saying that it can cause strokes, heart attack or even death. I am really down at the moment. I also have type 1 diabetes. Treated with an insulin pump. I should be grateful for the things that the nhs supply me with, but sometimes I think why bother? I am really frightened and keep crying. Sorry for moaning. Does anyone else feel this way?
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Replies to This Discussion
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Permalink Reply by Philip Brown on
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I can relate to your feelings. I have gotten over the the idea of wearing a mask... but I really have a hard time adjusting to my PAP machine. I currently have an autopap machine (which is a self-adjusting CPAP that offers some extra features to make it a little easier to breath against).
I can tell you that some of the newer machines are very quiet. I had an Resmed S8 Autoset II, and it was very quiet (much quieter than a machine I had about 5 yrs ago).
I just got a new Phillips Respironics System One Remstar auto set... which is the latest model from Phillips / Respironics... and it is so quiet that its almost silent. I've also heard that the newest line from Resmed (the Remed S9 series machines) are also very quiet... but Resmed has changed it's pricing policies, making it very difficult to purchase their equipment at a substantial discount (--which may be an issue if you are paying the bill... or a percentage of the bill... but might not matter to you if your insurance is paying some or all of the bill).
I can't comment on the other brands of machines re: their noise levels... but I assume that there are other brands that are quiet too. I thought I'd share my own personal experiences -- (plus... I believe I'm correct in saying that Respironics and Phillips/Resmed are the two largest producers of PAP equipment... if that matters to you).
If your insurance limits your machine choice, there are some ways to save money on purchasing the equipment yourself... for example, I used an auction site that sells CPAP equipment, and was able to purchase a lightly the Phillips Respironics Autoset machine with a heated humidifier for $320 (it had fewer than 50 hrs of use).
If you want some suggestions on where to purchase used equipment, PM me and I'll PM you back, or post a request to the forum, and I'll post some suggestions back in the forum.
Lastly, regarding the noise, my wife is a very light sleeper... so I had already purchased a noise machine to create some background noise so that she is not awakened as easily by background noises. It was a big fight to get her to let me leave it on, and at a decent volume... but eventually I prevailed, and now she actually thanks me for it. You quickly learn to not hear the noise machine, and it allows you to sleep soundly since the machine masks many other noises.
I did a lot of research before choosing the noise machine to get, and I eventually purchased this one:
"Marsona Travel Sound Machine" model TSC-330
(it runs about $70 and is worth every penny! - see Amazon's reviews of this machine for great info on this and other sound machines) because it was small, had excellent reviews, and because the noise is generated electronically... meaning that it is not playing back a prerecorded sound or playing the same noise track in a loop. Some people complained that other solutions played back the same noises in a loop and that eventually they would recognize the pattern and it became annoying. Others complained that they could hear a little click or change when the loop repeated, and that it drove them nuts... so this solution seemed best (for us) because the noise generation was random so you wouldn't get any of these clicks or repeating loops.
I hope that this advice helps you. Try not to get depressed. Science has made TREMENDOUS strides in this field in the last five to ten years, and I only expect that to get knowledge to get better. So there may come a time when their are other very effective treatments to your particular problems, and/or other alternatives that work.
Personally, I have tried a dental appliance with OK (but not great) results... and I am very interested in following other possible treatments such as "the pillar" treatment... although I am not ready to try it yet.
My gut tells me that a combination of treatments may end up being the best solution for me in the long run... and it may be for you too.
So try not to get too down. Although I am still struggling with finding a treatment that works well for me... I am truly relieved to know that I have a problem and what it is. For so many years I was sleepy, had problems getting up in the morning and other issues. Most people assumed it was laziness or a lack of caring... but I *knew* that wasn't the case since I am VERY, VERY driven.
So try to focus on the positive side of things. Now that you *know* that you have an issue, and you know that their are treatment options... you can evaluate your alternatives and address it.
Re: dating... you'll be able to work it out and charm the right woman. For example, maybe not use the cpap some nights... or put it on later in the night, after you've had some sleep time.
For most people, the CPAP also stops snoring... so you might even have some positive aspects.
Call it your "fighter pilot" look, and tell her that this will help you sleep quietly without snoring, so that she'll get some rest and you can give her your undivided attention the next day!
I know that you can turn on the charm.. and a little bit of charm (and good humor) can go a long way. Before you know it... you'll probably have your date telling her friends about how cute your are... including your night time rituals!
Keep your head up... and keep at it. It's been (and is) a hard road for me personally... but I'm convinced that I will find what works for me... and that I will keep revisiting the options every 2-4 years to see what new things science has come up with.
Sincerely,
-Sleepy Phil
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Ooops... I just noticed "Carolyn"... meaning you're a lady... not a dog (ah... guy!)...
Carolyn...
Most of my post still applies. For guys... tell him that it's your defense mask... since so many guys snore, belch and fart that you need the fresh air! (He'll probably think it's funny).
The truth is... guys are very simple, and quite dog like. If your dating leads to knowledge of your sleep habits... most guys won't care by that time. They spent time with you because they like you... and guys have such pavlovian dog-like behaviors, that by the time we see a woman's pillow... NOTHING else matters to us! Trust me. A little bit of confidence, and a little teasing him will go a long way... Plus... like I said in the earlier post.. you don't have to put the mask on right away. You could relax for a while, and maybe even sleep a little, then put the mask on later in the night, and take it off in the morning.
Everyone has their own issues to deal with... and the mask is probably a much bigger issue to you than it would be to many guys. Especially if you approach it the right way, and don't play it up as a big issue.
Good luck and keep at it!
-Sleepy dog Phil (After all... ALL guys are part dog... those who think they aren't haven't gotten in touch with their inner-dog yet!!!)
:-)
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I had undiagnosed sleep apnea for years. Instead of thinking about why I was so tired and depressed all the time and had unexplained high blood pressure that woke me up at night, the docs gave me antidepressants and anti-anxiety meds. (I had perfect blood work so they assumed it was all in my head and that I was having mental issues. No!)
I finally put my foot down when they wanted to try me on yet another med and told them I was depressed and anxious b/c I couldn't sleep and was waking up scared to death in the middle of the night, not b/c I was clinically depressed. (I know true depression; my husband has it and with meds, it's under good control.)
So, I've been on CPAP for 2.5 years and on BiPAP for a month. My sleep is better but I have other health issues that are stopping it from being the total answer to all my tiredness. Perhaps that's what you're going through too, but please persevere. You'll be glad you did. Things may not be perfect but they will get better. I'd say I'm 75% better and that's better than 0% better. I wish you all the best!
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hello Carolyn,
First let me say that not everyone's advice is going to be a solution for you. And also let me say that being depressed is naturally going to occur. It is a frame of mind. Be thankful you are alive and have this opportunity to make a turn around.
I am not the typical apnea sufferer. I am 6'5" tall and weight one hundred and sixty five pounds. Not at all over weight, if anything under weight. I have mixed apnea, which is another issue of it's own. My obstructive apnea is better after just 3 and a half months of treatments, but still a very long way to go. Apnea treatment has come along way since the first CPAP came out. Mine is very quiet and helps me to some degree get better sleep. But being that i have central apnea also, I still have several dangerous issues ahead of me.
When I first started thinking that my sleep issues may have had some effect on my overall health I went to my Dr. and ask for a sleep study. He hesitated at first because I had never mentioned having problems other than insomnia. But as time went on I noticed things that caused me to be concerned. Rising blood sugar levels, heart problems and other conditions associated with sleep apnea.
All I can say is to be strong and try to be focused on life and living it. I know, I know, easier said than done. But believe me,I know what i am talking about. I have been going through far more everyday issues than 95% of Americans. I can safely say this in all confidence. Ever been run over by a big truck? I won't get into all of the issues I have since it happened to me.
Do your best to take care of yourself the best you can and trust that things will get better if you stick with it. I wake up every morning and several time throughout the night wishing I did not have to wear this thing on my head. But this is life for those who wish to keep on dealing with life's challenges. Just try to look at things as a test that you are going to ace. Study the issues and educate yourself on how to make things better for your future. You can live with APNEA and be happy too.
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Thank you, all, for your replies. I have the new philips respironics Bipap auto machine with a humidifier. The machine is good. I haven't got the right mask sorted yet. All either cut into my face or they leak. I go back tomorrow, wednesday, to try more masks. I am lucky because here, in the uk, we get all of our medical devices free of charge. As for dating--I don't think this will apply as I have been married for 34 years hahahahaha. Thanks again,
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I too was not very happy when my sleep test revealed sleep apnea. The though of having to wear a mask hooked up to a machine was unwelcome. However, like others here I have been using the machine and have to say it has not been as uncomfortable as expected. My brain fog has lifted and I have more energy which is wonderful to experience. i am sure you will adapt very quickly.
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Just read your reply so here goes to response. Yes the mask issues can be a struggle. I have had the same problems. Cutting into my face, rashes, leaks, but time and patience will do the trick. Just stick with it. We all understand what your are going through and care enough to help in anyway we can. And good for you with 35 years of marriage. Not many can say that!!
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Permalink Reply by Ginny Edmundson on
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I feel depressed also. I can and have adjusted to the "blowing air" but just can not find a mask that fits. It is such a long process & I don't really see any light at the end of the tunnel. Still trying and I have been 100% compliant in use. A good night here and there and then some horrible nights (like last night. I dread going to bed every night and happy when early AM comes. I just try to keep on going! Good luck and hope you have supportive doctor etc.
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Regarding Phil's comments on quiet vs loud.
I have a Resmed S9 autotitrating BiPAP. It's extraordinarily quiet. I had a Remstar BiPAP (not auto) for 3 nights and it was very loud at the mask. No matter which mask I tried it was bad, keeping both of us awake. I believe it was the machine. I returned it and asked my doc for the Resmed S9 b/c I had had a Resmed CPAP the first round that was very quiet too. The very same masks were quiet with the Resmed. It probably would have been the same with a replacement Remstar - if it had been an auto - but the DME was so awful I fired them and just went elsewhere and got the machine of my dreams. :)
Whatever you get, don't put up with a whistling machine!
Incidentally, I've been looking for a comfortable, non-leaking mask since day one. I finally found the Swift FX for Her nasal mask but I open my mouth and /or have lip leaks. So, I keep my mouth closed with the Ultimate Chin Strap. That strap is the only strap I found that keeps the *lips* closed as well as keeping the chin up.
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Just remember Ginny, there are several ways to 'skin a cat'. I'm wholeheartedly for 'whatever works' and question any cookie-cutter 'CPAP is the Gold standard' approach. Leave no stone unturned. To my knowledge, many of the most promising studies on CPAP efficiency is with nasal CPAP masks. Become your own doctor and arm yourself with a arnsenal of knowledge and questions for your healthcare professional. My dentist uses the metaphor of the Cage (your mouth size) is too small for the Tiger (your tongue). Ultimately, Sleep Apnea is a case of underdeveloped mandibular and maxillofacial structures. Of course, I'm no 'expert'.
Ginny Edmundson said:I feel depressed also. I can and have adjusted to the "blowing air" but just can not find a mask that fits. It is such a long process & I don't really see any light at the end of the tunnel. Still trying and I have been 100% compliant in use. A good night here and there and then some horrible nights (like last night. I dread going to bed every night and happy when early AM comes. I just try to keep on going! Good luck and hope you have supportive doctor etc.
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The Cage is a great analogy to my problem too and likely to many of us. You mentioned "Sleep Interrupted" by Dr Steven Park. It's a wonderful book; I have it on Kindle and review it from time to time to see what I've missed. :)
Jay, do you have a mouth appliance? I have clicking in my right jaw but I've done nothing about it. I was wondering if a mouth appliance would keep my mouth closed. I do have leaks from the corners (as in c-o-r-n-e-r-s) of my lips too, so I don't know. I spelled it out because it doesn't look like corners on my screen.
If my new equipment doesn't work, I'll see a sleep dentist about this. It's tiresome - and yes, depressing - and expensive going through all this but it's important to get the problems resolved. I'm 100% compliant with the machine but it sure is hard to be sometimes.
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