How did you feel?

Hello and welcome to the forum! First, you are not whining. I, like some others who have responded, welcomed my diagnosis because I finally had a name for the enemy...the enemy who was taking my life away from me. I did not get the big turn-around in terms of how I felt and that was a letdown. Heck, I am still not where I would like to be, but I suspect I spent many, many years undiagnosed and during that time (surprise!) I got a whole lot older.

I am 58 years old and have been on CPAP since December. I do often wonder if I might have felt quite a bit differently about this diagnosis if I were younger. Maybe, maybe not..there is no way I will ever know. I do think it is more than okay to feel down about this. I know the stages of grief have been mentioned and I think that is a very valid lens to view this whole experience through. We are all different in how we respond to this diagnosis and the challenge of learning about and optimizing our treatment. You will find much assistance here. Also, you are way ahead of the curve in recognizing that something has been hindering your daily life. Now you know what that something is. Now you can move forward. I wish you all the best and we will all be here to support you every step of the way.

Best wishes as your journey begins..

Jeanette

Thanks to all for the pep talk, well wishes, and advice.

I've pulled myself up by my boot straps, er... mask straps I suppose and am actually looking forward to Monday night's titration. Despite the wires, leads, and a mask shooting air into my face, I am hopeful that I may get the best sleep that I have in 10 years. I may even dream, which I haven't done in so long I can't remember when the last one was. My wife is being supportive so far, and even said jokingly that if I have a mask on in bed that I can't talk while wearing, then I can't say "no" and she might jump my bones...

I just hope I maintain this attitude during the actual titration!

Thanks for the support. If anyone is ever near Annapolis Maryland, let me know.

I'll post results after the study.

The diagnostic center I am going to is a little weird. My primary care doctor ordered the study, so I went and had that done. The sleep study center then sent the results to their in-house doctor, and then they called me back with them and sent a copy to my primary care doctor. I'll do the titration, and same deal, but I never actually see their sleep doctor. My assumption is that their sleep doctor will do the actual prescriptions. They said after the results of the titration were in, they would then put me in touch with several local DMEs. Just to be safe, i've made an appointment with my primary care doctor on Tuesday to talk about the diagnosis and treatment. I may ask for some ambien to as a fall-back measure in case I have trouble sleeping. I'm thinking of maybe asking her for prescriptions for the equipment too just to be safe?

I've very hopeful that the treatment will work and they'll be able to get be on therapy at home soon. I've got the best insurance you can have in the Federal Government and I'm in a major metro area, so hopefully things will proceed smoothly.

Have a good Friday. This will be the first time in memory that I am actually hoping the weekend goes quickly and I am looking forward to Monday.

Well, mixed. I did not at all relish the thought of having to use CPAP forever. Alternately, I rather hoped the diagnosis would be sleep apnea, as I had been feeling distressed for a year about the decline in my cognitive function, memory, mood, living with fatigue. When bloodwork, mri etc came back fine, well, if it wasn't SA, I was facing that at 43 this just might be how I will be the rest of my life, with expected continuation of decline. That was upsetting. Then the diagnosis. Phew. Something manageable. Just started therapy this week, and am grateful for the improve in many aspects of my life so far. Happy dance first couple days, then yesterday when messing around with the hose and mask at bedtime again a little "ugh" at the realization this is my life. But as others have said, it will all be worthwhile for better quality of life and health. Good luck!

Mask2sleep wrote:. I may even dream, which I haven't done in so long I can't remember when the last one was. My wife is being supportive so far, and even said jokingly that if I have a mask on in bed that I can't talk while wearing, then I can't say "no" and she might jump my bones...

Shhh - whisphering " lots of guys say cpap is better the viagra any day once it starts to work"

Mask2sleep, I think you're smart to talk to your own personal doctor about the test results. Yes, she can certainly right the Rx for you, and might be more likely to write it the way you know it needs to be since you already have a relationship. Let us know how things go at the titration.

I am 63 and overweight. I was diagnosed with severe apnea about 2 weeks ago. The Dr. told me I averaged 41 episodes in a hour. I was angry that I had to do this. I feel like I am falling apart. But---I quit feeling too sorry for myself and decided it was better than the alternative.

I wish I had been diagnosed when I was 34. Maybe I wouln't have missed my children's lives because I was too tired to get off the couch once I got home from work. I was skinny and it never occurred to anyone to check for it.

Do it for that beautiful baby. You won't regret it.

Bev

sjb46 wrote:I am 63 and overweight. I was diagnosed with severe apnea about 2 weeks ago. The Dr. told me I averaged 41 episodes in a hour. I was angry that I had to do this. I feel like I am falling apart. But---I quit feeling too sorry for myself and decided it was better than the alternative.

Bravo!

I think my situation is a little different than most.

I had my first sleep study almost 20 years ago, and had many since. They dismissed my initial apnea diagnosis from my first sleep study, and every study thereafter was negative for sleep disordered breathing (SDB). About 8 years ago I requested a sleep study hoping that I had Upper Airway Resistance Syndrome because I wanted a real, treatable diagnosis with some potential for alleviating my sleepiness. But alas, I was told I did not have sleep disordered breathing. I was disappointed. I carried on with my "idiopathic CNS hypersomnia", until about a year ago, a new sleep doc suggested that I may in fact have SDB, and put me on an empiric trial of CPAP. I was very happy when she told me there was a chance again that I had a treatable disorder. Having had no formal titration, after several months of trial and error CPAP therapy, I was somewhat less excited. I had times I felt improved, but I couldn't persist with the therapy for any stretch of time because the full face masks wreaked havoc on the bridge of my nose. I didn't know what my pressures should be, and my doctor moved away. CPAP therapy was harder for me than I thought it would be.

I decided to have my 5th sleep study, thinking that at most I would have UARS, and most likely I'd have nothing. They diagnosed me with OSA (although elsewhere, using some other hypopnea criteria, I may have been diagnosed with UARS, who knows). Nearly 20 years of misdiagnosis, with the quality of my life tanking, and I finally had a "real" diagnosis? I couldn't believe it. I felt simultaneously pleased to finally have an explanation for my problems, and anxious and upset that I had a diagnosis whose "gold standard" treatment I had already failed to tolerate, at pressures lower than what they were prescribing for me.

I got a new CPAP, I switched out of full face masks and started using nasal masks with chin straps, and I was doing somewhat better on therapy. I did this for a very short time, and then I had surgery (3.5 weeks ago)--nose and tonsils.

So to answer your question, I've had every emotion, some of them concurrently! I have had times where I was ridiculously happy at the possibility or the reality of having a bona fide explanation for my symptoms, and I have felt anxious and depressed at the possibility that I may not be able to tolerate its treatment. Losing weight was not an option, as I weigh about 25 lbs less than you do! (Although I haven't been able to stop eating every since my surgeon told me that I absolutely can't gain weight for the rest of my life, not even 15 lbs... )

One more thing I want to tell you: Do not be disappointed if you don't feel like a million bucks the morning after the titration. Lots of people don't, even ones who go on to rave about how CPAP has changed their lives. If you do, great, but if you don't, it doesn't mean you won't one day.

SleepingUgly wrote:...
One more thing I want to tell you: Do not be disappointed if you don't feel like a million bucks the morning after the titration. Lots of people don't, even ones who go on to rave about how CPAP has changed their lives. If you do, great, but if you don't, it doesn't mean you won't one day.

Agreed, the titration is performed in a very abnormal sleep environment, and they're constantly adjusting the pressure to find the right one for you. You may also be asked to sleep some of the time on your back, which may or may not be comfortable for you. All in all, keep your expectations low for getting a good night's sleep, and concentrate on the benefits that will come later.

Having said that, I was so terribly sleep deprived when my titration was performed that after only five hours at a reasonable constant pressure of 14, I awoke feeling like a million bucks. There is no doubt that this feeling of well-being acted as a very strong impetus to continue the therapy.

Your mileage may vary, but even if the titration night goes poorly, hang in there, and keep us informed.

We will do everything we can to help you over the hurdles.

Mask2sleep wrote:Hi there,

I'm new here so please pardon me if this has been posted before.

I had a sleep study on Saturday night and got the results yesterday. I was told I have moderate sleep apnea and I am going in for titration this coming Monday. Thank you to all who have responded to my questions, forewarned is forearmed as they say.

I'm just curious, how did you feel when you were diagnosed? I'm pretty bummed that for the rest of my life I will have to strap a mask on and have a machine help me breath. I'm 34 and 145 pounds wet, and while I suspected I might have had apnea for a decade now, having been diagnosed brings it all to the forefront and the whole idea of diagnosis and treatment is kind of overwhelming. Did you feel this way to when you were diagnosed, or am I just whining?

I will go through with the therapy and do my best to be compliant, I can't live like this anymore as the fatigue is affecting my quality of life at home and my performance at work. I am happy that there is a treatment that is effective and I will hopefully get my energy back, so I guess I shouldn't feel upset by the whole thing, but I can't help it.

Thanks for reading.

Hi,

First, excuse my english, I live in Montreal'french city. I just want to tell you that cpap for the ret of your life is like a better feeling for the rest of your life. It's very easy to live with this treatment. I used CPAP for around 15 years. I remenber the day I went to the clinic to get my CPAP. It was in january, while snow storme, I was very sad, I was discouraged. But, one time I found the good mask for me my new life began.

Ok, I'm going to continue with my story with my wrong english... so, don'y worry, you just to be sure to choice the best cpap for you. You can get some help with your doctor or with some therapist. Afetr that, the life continue but not the same way... your life will be better because you will fell more better. And you will see, one day your wife will tell you: can you start you cpap please, I would like to sleep now.... she will need to listen the cpap noise to sleep...

Yesterday, I received a new cpap I bought to travel. A very small Cpap. I spend 3 or 4 hours to study how to use it and I call my friend who use cpap too. We discuss like 2 persons talk together about computer. Now, cpap is in our life like a tv or dvd. If your doctor told you that you need the Cpap, be happy. It means that your life conditions will be better for the rest of your life.

I traveler a lot and I have always my cpap with me. Before it was a little bet embarassing but now a lot of persons use cpap. Once again, I discuss about cpap with people (in travel) like I discuss about everything we an discuss when we visit a other contrie.

So, don't worry, Cpap is just a good thing for people like you and me. And also for your family. I think that very soon, people will have cpap like people has a tv or dvd. And ask around you if some people khows or use cpap. You will see, you will be surprised. A lot of people use Cpap and got a better life.

So, you don't have to be worry, go and get your cpap. I'm sure than in one month you will be very happy for your move.

miloscanada wrote:I spend 3 or 4 hours to study how to use it and I call my friend who use cpap too. We discuss like 2 persons talk together about computer. Now, cpap is in our life like a tv or dvd.

I think this forum serves that purpose for many here. Some of us don't have a friend we can call to discuss these things.

Thank you for your uplifting and encouraging message.

Oh, and there is nothing wrong with your English. It was perfectly understandable.

For those of us who are 'fluffy', cpap is the only obesity treatment that insurance covers. . .

For those of us who are 'fluffy', cpap is the only obesity treatment insurance will cover.