Is there anyone here with sleep apnea?

[Metasomatized Ijolite]

I was recently diagnosed with it after 17 years of being misdiagnosed. I'm on my first week with a CPAP machine. I was just curious if there was a "veteran" of this condition to provide support and information.

 

[guest username]

There is another thread devoted to CPAP from another member who was recently diagnosed.

Out of curiosity, how were you misdiagnosed for 17 years? The symptoms of OSA are pretty straightforward. Did you doctor hop or play down your symptoms? At any rate, a misdiagnosis of OSA isn't like misdiagnosing a heart attack.

 

[Cutiebaby]

I dont know how it was misdiagnosed for that many years, though I do know that it can be misdiagnosed.

My son at 2 years old would sit up in the middle of the night not breathing correctly and then scream and cry afterwards. One night he turned blue on me, I was petrified, so I took him to ER. They told me he had night terrors and that led him no hold his breath and not breath at night. 7-8 years later we had him looked at again, seems as though he had issues due to his tonsil/adnoids being too large. Well we had them both removed. And to this day he still has sleep issues.

No one really knew what was going on, and until a proper sleep study is done physicians can diagnose it as a number of health issues other than what it truly is.

 

[Metasomatized Ijolite]

My main symptom was that I would constantly need to take naps. Some doctors just said it was depression and put me on antidepressants which caused even more drowsiness among other things. I'm still on an SSRI which I hope to quit taking. I was told that I was vitamin D3 deficient and told to buy one of those sunlamps. I was given sleeping pills by a psychiatrist that was getting warm with the problem. Her theory was correct in that I wasn't getting deep sleep. The problem was her treatment method. She gave me pills that knocked me out but I would be even more tired the next day. Keep in mind that I stayed with these various treatment methods for years before I would try asking for another treatment. Not once did a doctor mention having a sleep test. I came close to suicide because I felt like there was no hope and my problem kept getting worse. About 6 months ago I reached a point where I would sleep 18-20 hours on weekends and still feel tired. The only way that I made it through the working day was by taking large doses of caffeine pills. Then as soon as I got home at 5:30 PM I would go to sleep and then wake up around 9:00. I'd eat something and then go back to bed until the next morning.

Finally, I switched primary physicians. There are two main groups of family practice physicians in my area. I had been going to one that was tied to a local university med school. Several people recommended the other group of physicians because they were more knowledgable. So, I switched. When I told my new doctor my problem he named a bunch of things that could cause it and he told me to go have a sleep study and then come back. His office set up the sleep study with the local sleep center. I went in for the study thinking it was a waste of time because they weren't going to find anything conclusive. Much to my surprise it revealed that I had sleep apnea that was moderately severe. I was honestly HAPPY because not only did they find out a definite cause of the problem, it was also very treatable. I still need a second sleep test to have my CPAP titrated but they gave me an automated machine for temporary use as it takes a month wait to get a sleep test and then another month to get the results. They said the automated machine won't be as good as the one that the doctor adjusts but it's at least something to provide some amount of relief while I wait for the permanent machine. I've been using it every day since last Wednesday except for one day that I fell asleep unintentionally while on my couch. I feel that I am probably 25% better at this point. I'm no longer suicidal because I feel that there is now hope for me to feel good eventually. I am very serious when I say that I was contemplating suicide. I had made several different plans to kill myself with different methods and was trying to figure out which method would be the best in terms of quickness, chance of failure, and least shock to my parents and sister. I honestly wanted a method that would look like an accident instead of leaving my family with the thought that I killed myself.

Whew, that was a long story but I think it's one that all doctors should read to better their knowledge. If one of the doctors that I saw a long time ago had been knowledgeable of the symptoms of what is somewhat common disorder, I would have been spared a lot of suffering.

 

[Metasomatized Ijolite]

I dont know how it was misdiagnosed for that many years, though I do know that it can be misdiagnosed.

My son at 2 years old would sit up in the middle of the night not breathing correctly and then scream and cry afterwards. One night he turned blue on me, I was petrified, so I took him to ER. They told me he had night terrors and that led him no hold his breath and not breath at night. 7-8 years later we had him looked at again, seems as though he had issues due to his tonsil/adnoids being too large. Well we had them both removed. And to this day he still has sleep issues.

No one really knew what was going on, and until a proper sleep study is done physicians can diagnose it as a number of health issues other than what it truly is.

He still isn't better? With my experience now, I would keep going back to the doctor or going to another doctor until one of them finds the cause. By the way, the tonsil removal can be helpful in relieving sleep apnea since it clears more room for air to flow through. I am going to talk to my doctor about the possibility of me having mine taken out.

 

[Cutiebaby]

He still isn't better? With my experience now, I would keep going back to the doctor or going to another doctor until one of them finds the cause. By the way, the tonsil removal can be helpful in relieving sleep apnea since it clears more room for air to flow through. I am going to talk to my doctor about the possibility of me having mine taken out.

Yeah he still seems as though he has disturbed sleep. He is better than before, but not normal. He also grinds his teeth at night, so that doesn't help too much.

Have the tonsil/adnoids looked at. You are very correct about that factor. He usually would be so bitchy and look as though he had not slept in days. His attitude improved and he actually looks like he is not dragging anymore. However I sleep in the next room to him and I can hear the restlesness that he experiences still.

 

[Metasomatized Ijolite]

Teeth grinding can be caused by stress and anxiety. I used to have severe anxiety and panic attacks and I would grind my teeth and tighten muscles for no reason. Just because he's a child does not mean that he can't suffer from stress. How is his school life and social life? Does he worry about grades perhaps? If he is stressed out as a 9-10 year old, that's where you, Dr. Mom can help. I used to worry myself sick about grades even in 3rd or 4th grade. I was probably more worried about my grades in elementary school than I am about my job as an adult. Having a parent tell me that an occasional bad mark was not the end of the world would have helped me greatly.

 

[guest username]

No one really knew what was going on, and until a proper sleep study is done physicians can diagnose it as a number of health issues other than what it truly is.

So you're saying your kid has obstructive sleep apnea and is on CPAP?

 

[guest username]

He still isn't better? With my experience now, I would keep going back to the doctor or going to another doctor until one of them finds the cause. By the way, the tonsil removal can be helpful in relieving sleep apnea since it clears more room for air to flow through. I am going to talk to my doctor about the possibility of me having mine taken out.

A tonsillectomy/adenoidectomy isn't quite the same thing as a uvulopalatopharyngoplasty. For true OSA treatment, you need a uvulopalatopharyngoplasty, but people have very mixed success with it. Usually only 30% get complete relief, but for many, they can reduce their CPAP settings.

The people I've known who had OSA and use CPAP report a completely different life experience. People who doze off all the time, have trouble concentrating, wake up with headaches, etc. should have a sleep study performed. Like I said before, it doesn't take a rocket scientist to know the signs of sleep apnea.

 

[Metasomatized Ijolite]

it doesn't take a rocket scientist to know the signs of sleep apnea.

My new doctor immediately mentioned sleep apnea along with a dozen other things that could cause my problem as soon as I told him I had a problem with sleeping too much. He then said to get a sleep test performed. I have no idea why the other doctors I had gone to previously never mentioned a sleep test. In hindsight it makes a lot of sense that when a patient has a problem with their sleep that you should study their sleep first but I guess I had bad luck with doctors for a long time. I can't get over the number of complications that can be caused by sleep apnea.