Ruby

I am brand-new to this site and excited to be here. There isn't really anyone I can talk to about sleep apnea. I can give background if asked for but first I have a question. Does anyone else think that using a CPAP has not helped them? I have had sleep studies that show my mask and machine are doing their job but in 5 years I cannot tell that I feel any better. Does anyone else have that problem?

Yes Ruby, I also don't feel as well as promised. My mother got diagnosed first and she had wonderful results. She's wide awake all day and she lost weight. I still fall asleep at random times and haven't lost a pound.

Good discussion, welcome. I'm wondering if your apnea was mild. Sometimes we don't notice much of a difference. Our heart and brain do but don't have a way to tell us! Anyone else have a similar experience?

Actually they called it hypopnea. My breathing gets shallow so my oxygen levels drop. But this is the way they are treating it and I haven't come across any other information that I could take to my doctor. At least I know my brain and heart are being helped!

That's great Ruby, you need your heart and brain to function at top levels. I've never heard of hypopnea. My sleep apnea is far from mild. It's severe enough to make my life miserable. I've taken all the current meds available to stay awake during the day but nothing worked. Most made me fall asleep faster, even standing up during the day. Nasty falls from doing that. I've had my oxygen levels tested at night numerous times and I always pass with flying colors....@98 %. I believe it's the mask/nasal pillows I'm using, nothing stays in place all night. Very depressing.

Sometimes more than one sleep disorder exist together. In the case of apnea, it is not unusual for it to be most prominent and the other disorder only shows after apnea is treated. Maybe the apnea IS treated and another disorder is causing the sleepiness. Sounds dangerous if you fall. It's a good idea to check with the sleep doctor when sleepiness doesn't improve.

I will mention this to the sleep doc when I see him again in March. A huge problem is getting an appointment with the doc. I'm a patient in a large group of doctors....including most specialists. Unfortunately the sleep doc seems to change a lot. Right now I'm referred to a Pulmonologist. I'd rather be seen by someone who deals strictly with sleep apnea. I'm going to make an appointment out of network with an ENT doc who specializes in sleep apnea. He is one of a few doctors who perform the surgery with the implant in the chest that helps sleep apnea patients get off the C-Pap machine. Sorry to be rambling on like this. TMI I know. I'm frustrated that I can't seem to find the answers to what ails me. I've fallen out of a lot of chairs by falling asleep, out of bed numerous times. And no doctor I've seen seems concerned by this. No wonder I'm angry and depressed. Thank you for the suggestion about an underlying disorder.

Perhaps you could get in sooner at another sleep doctor. Safety first!!!! Many of the stories in the forum are about struggling with treatment or not getting the outcomes expected (symptoms improve). I have a question about poor outcomes for the forum participants. What keeps people from expecting good outcomes and working with their doctors and other healthcare providers to get there? Why is it acceptable to struggle with treatment or symptoms that remain? Why do you think so many report seeing several doctors before they get help and a good outcome?

Here are some of the answers I have for your questions. These are just from my experiences with apnea and Restless Leg Syndrome.

1. Not all doctors are that familiar with the problem. It takes time, patience, and money to find a doctor who will listen and take appropriate steps. If you don't have a good insurance provider, you may be stuck with the doctors they provide.
2. Patients are not always able to describe their symptoms well enough for a doctor to understand the problem.
3. Many people think the doctor knows best and don't tell them that things aren't working. At the same time, their are doctors who feel they DO know best and that their patient is either a hypochondriac or imaging things.

I feel that each person has to become very educated about their problem. Enough so that they can ask intelligent questions and insist that doctors pay attention to what they say. You need to be your own advocate and a big part in finding solutions. It does get frustrating when doctors and family just don't get it.

You provided some great insights Ruby. Thank you. I think your last is most important. Taking responsibility to be your own advocate and do your part to make treatment successful is KEY. It should be a partnership with your doctor and you have to be an active participant.