Poll: How many years before diagnosis? Treatment?

[Muse-Inc]

Curious as to how many years each of us went undiagnosed and how long between diagnosis and treatment.

[Bearded_One]

My mom was taking me to doctors for the classic symptoms of OSA when I was about 12 or 13, and I was diagnosed and started CPAP when I was 38.

[Pineapple]

My apnea symptoms started at age 7. About a year and a half ago I went in to my doctor and insisted on a sleep study - his reaction was "you can't possibly have apnea". I gave him a compelling response - "I'm tired, and the obvious cause is I'm not sleeping" He was very surprised to find out that many of my ailments were red flags for apnea - they just don't cover this well in med school if you ask me.

I'm 48 now.

[Julie]

Hi, I wasn't aware of a problem until my ex told me how I was sleeping, but on thinking way back, I might have had one ... forever? I was not a 'sleeper' at all (just the opposite), but I think there were other related things going at various times. Anyhow, being in a rural part of the country here, I had a sleep study done (cannot remember how long that took to set up) and was told by my MD that I had apnea, but waited months for a script to be arranged because the original results were sent out to be dealt with (titrated), and in fact if I hadn't called on my own after so long, I could still be waiting! It was obviously not considered a priority or taken very seriously, even though my event count/night was quite high.

[Hawthorne]

When I was diagnosed in June of 2002, I learned I would need another study called a titration study. By putting myself on a cancellation list, I got my titration study in September of 2002. I was told I would see the Specialist in December to review the study and discuss treatment options. It would be an almost 4 months before I would have a prescription in my hands! I had been told, by the sleep tech, that I had severe sleep apnea ( a no no for them to tell me).

I had already researched the possible treatments and decided it would be cpap for me.

About a week later I went to see my PCP. I told him that waiting until September to basically get a prescription was not acceptable. His comment was that I had probably had it for quite some time and that a few more months would not matter.

I told him I had researched sleep apnea, knew it was a very serious condition and that mine was severe so that a close to 4 month wait mattered to me. I don not think that it was good for my health to wait that long for treatment.

I guess I made my case! While I was in his office, he called the Specialsit and got the the titration pressure. He wrote me a prescription that day. The next day I was the Provider's getting a machine, humidifier and mask.

[drj130]

To tell the truth, I'm not sure how long I've had this. I know that it has been a while though. Took my Soldiers giving me a hard time about how they couldn't sleep because of my snoring. Tomorrow (Friday) I have my titration, or so they said. Don't get to talk to the doctor because he had to fly to Iraq to get a patient. I might hear from him next week, but I've no idea. I do know that if i don't get to have a hand in my machine choice, I will be really upset.

[ricochetv1]

I'm glad that I didn't have to go through all that waiting...
I went to my doc when I had a physical and told her about my daytime sleepiness, and my wife's reports of my snoring, gasping, etc. at night.
She sent me to a specialist that she's known for years. He sent me to a sleep lab, which called the next day to schedule and had me in there in less than 2 weeks. The doc called me the next day with the results and set me up with the titration study, which was at the end of the week, 07/03.
Tuesday I went back to the specialist and he wrote the scrip. Next day the DME calls and schedules an evening appt. for delivery and setup on the 21st.

I know my experience is far from the norm, from what I've read. It's a damned shame that more people haven't had a good experience through this process. It's problem-enough not getting good sleep. Having to fight for treatment is a nightmarish prospect.

Anyone in the Dallas area that wants to check out the specialist I've been seeing is more than welcome to PM me.

[JimIllinois]

I recall waking up a few times at night in a panic (CAN'T BREATH !!), about 15 years ago. Eventually, I think I just got tired enough to sleep through the suffocation.

About a year ago, my wife got aggravated enough that she started telling everyone about how I stopped breathing every night. That's cheating... but it worked - I finally went in, had my test, got a call in the morning ("dang, you had high numbers.."), had the CPAP in three days, and slept 8 1/2 hours the first night.

Now, I am experiencing the Grand Mask Test Regime, which will continue forever, at 2 masks per year. I'm planning a trophy room, full of used masks. ("This one leaked around my cheek bones. Here's one that leaked from the bridge of my nose. That one leaked around my mouth. Is that peanut butter...?")

[ricochetv1]

I think I fell into the "high numbers" category... In my 1st study, had 33 apneas, 100 hypopneas, and O2 went down to 71% at its lowest... Lots of fun... no wonder I feel like shit all the time...

[Kiralynx]

I know for certain that I manifested the symptoms which led to my being diagnosed in June 2002, after losing 60-75 pounds.

But I had some of them as far back as 1982, when I wasn't overweight.

I was diagnosed by accident... the pain from my cancer surgery wasn't going away. They sent me to a pain management specialist. While there, I asked her about the on-going hip pain... and she sent me for a sleep study!

[TheDreamer]

I see I'm not the only one in the less than 1 month to Treatment category

I got the diagnosis on December 27th, and started treatment on December 29th.... (and in between that, I joined cpaptalk.com)

The Dreamer.

[twokatmew]

I had to wait two months for the initial sleep study, and it took three weeks to get the results. I would have had to wait another three months for the titration study, but the sleep lab had a cancellation, and I got in the next night. Because my pulmonologist read the titration study (and knew I was miserable from lack of sleep), he read the study the next day. So it was just under a month between diagnosis and getting my machine!

[Komodo]

I don't know how long I've really had apnea. Probably a LOT longer than I know of. For me, it really "started" in Nov 2008. Tired all the time, falling asleep unexpectedly several time a day, including while standing up over the stove cooking dinner! Went to my PCP, she sent me for a complete physical, which turned up nothing. Then I started falling out of bed everynight. 3, 4, 5, time a night! It was so bad, I went out and bought a bed safety rail to keep me from cracking my skull in my sleep. In May of 2009, went back to my PCP because my legs were swollen. She gave me water pills, and had me return the next day to check on me. That next day, while in her waiting room, I started getting chest pains. She RUSHED ME to the hospital, where they put me in Cardiac ICU. Tests, tests, and MORE tests. The right side of my heart was swollen, but that was the only thing wrong. My Cardioligist wanted to operate, "just in case", and I told him NO WAY! He then told me to go see my Pulmonoligist, and if he coludn't find anything wrong, to come back for the operation.
My Pulmonoligist was on vacation, so I saw a different doctor in the group. Never saw this doc before, he never saw me. When I walked into his office, he took ONE look at me and asked if I did a lot of snoring. I said yes, and he said "You have Sleep Apnea." He had his nurse get me an appointment for a sleep study, and put a RUSH on it. Two days latter I got the study! Within 2 weeks, I had the 2nd study, and the DME over to my house with all my new equipment.

BTW, according to my doc, my swollen legs, and heart problem, were directly caused by my apnea. Both of which have been cured.

[JayC]

By my own report of sleeping and symptoms, my issues go back at some level to at least puberty, over 30 years ago.

In late 1980s, went to a doc specifically for fatigue/sleep issues. He shrugged his shoulders "For whatever reason you are not getting restorative sleep..." and that was it. never had a sleep study then....

2002 had a sleep study...trying to find records to see how my oxygen levels were.....the rest of the study has sleep disruptions but if I am remembering correctly, not much in the way of obstructions. Doc made a big issue of saying I didn't have obstructions for the most part, and cpap was overkill with my numbers............. by the doc's manner I was discouraged from trying cpap, and money, insurance, and living situation had not settled down. I really wonder if he said what he said knowing my desats......?

Different docs, different study, different study location in June 2008....got a split night because of desats, tech gave me brief feedback (very shallow and/or very slow breathing at times leading to desats....hypopneas almost exclusively) and I had mask and machine in my home in less that a month from this sleep study.

I am a few days from a year on treatment. Makes a difference everyday.....many years of no treatment to attempt to mend (although I'll never get those lost/untreated years back, I hope for increased vitality, connection, function......)

J

[jules]

Diagnosed Aug 2001, CPAP in hand Nov 2005.