How long did it take before you first got diagnosed.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.

When were you diagnosed

1-6 months
3
8%
6-12 months
1
3%
1-5 years
6
16%
5-10 years
8
21%
10-20 years
11
29%
longer than poll options
9
24%
 
Total votes: 38

tiredandscared
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How long did it take before you first got diagnosed.

Post by tiredandscared » Sun May 03, 2015 7:08 am

One interesting question. Many people on here say they went years before being finally diagnosed and treated. I tried finding info on this. Couldn't find anything. It would be interesting to see how vigilant health care providers are at finding out SDBs(sleep disordered breathing). Please share your experiences.
Last edited by tiredandscared on Sun Aug 09, 2015 10:07 am, edited 4 times in total.

JohnO
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Re: When were you first diagnosed

Post by JohnO » Sun May 03, 2015 8:26 am

tiredandscared wrote: It would be interesting to see how vigilant health care providers are at finding out SDBs.
I'm not sure what your acronym SDB means -- maybe "Sleep Deprived B*st*rd?"

As far as being diagnosed with sleep apnea, I don't know if the health care provider would have diagnosed it if I didn't bring it up. I had snored for years, and had wondered about sleep apnea for a few years. I didn't have many regular symptoms, but a few times a year I would wake up with a bad headache. Once and a while I would get very tired driving, whether it was mid afternoon or evening. When my wife first told me that I stopped breathing for a few second multiple times a night, I decided to dig deeper. I bought a recording pulse oximeter, and confirmed that my SpO2 levels were dropping regularly through the night. After that, I took that evidence to the doctor and requested a sleep study, which confirmed the sleep apnea. This was nearly 3 years ago.

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Re: When were you first diagnosed

Post by postitnote » Sun May 03, 2015 8:47 am

17 or 18 years ago.
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robysue
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Re: When were you first diagnosed

Post by robysue » Sun May 03, 2015 8:49 am

tiredandscared wrote:One interesting question. Many people on here say they went years before being finally diagnosed and treated. I tried find info on this. Didn't find any.
The way you've stated the question, you're still not going to get any information about how long people suffered with undiagnosed OSA. You've asked when people were diagonosed. For me, that's Aug 1, 2010. (So that's 1-5 years ago in your poll.)

But that tells you nothing about how long I think I may have had OSA before being diagnosed. And it tells you nothing about how "vigilant" my doctor was at "finding out about" my SDB.

In my case: I probably had some mild-to-moderate OSA for 3-5 years before I told my doctor that my husband was nagging me about getting a sleep test because he'd witnessed me not breathing at night and my very mild snoring had was changing both in volume and in how it sounded---as in I was doing less "purring like a cat" and more snorting and low raspy, irregular snoring. Hubby had been bugging me about getting a sleep test for about 2 years before I told my doc about hubby's concerns, but I was resistant to the idea of bringing it up with my doc. But as soon as I told my doc, the sleep test was scheduled within 2 weeks. So my doc responded very promptly and correctly as soon as I reported: My husband says I quit breathing at night sometimes and I don't think I'm sleeping very well.

Should my doc have figured it out without my telling him about hubby's worries? I'd say, "No, not really."

I was NOT complaining about daytime sleepiness nor was I complaining about my bad sleep to my doctor. Yes, I had some insomnia issues, but I'd learned years and years ago how to manage the insomnia with good sleep hygiene and for the most part I would have described my sleep as "ok" or "decent enough" before my diagnosis. While I was not waking up genuinely refreshed prior to my diagnosis, I also was not waking up feeling horrible---except for hand and foot pain.

During the 3-5 years before my sleep test was done:
  • I did tell the doc about some chronic pain issues, particularly in my hands and feet that was worst right after I got up each morning, so he sent me to get x-rays and the ones of my feet did show some signs of minor arthritis, and the doc told me to use ibuprofen as needed for the pain and that taking ibuprofen for my feet was probably not going to trigger rebound headaches. (He was right about that; for the most part when I take ibuprofen to address non-headache pain, I don't get into too many problems with rebound headaches.)
  • I did report some daytime fatigue issues but I was also perimenopausal at the time. And at one point the doc did run several blood tests that showed (1) a slightly elevated SED rate, but not high enough to indicate anything was definitely wrong and (2) low Vitamin D levels, for which he told me to start taking Vitamin D. Thyroid was checked multiple times, and always came out in the middle of the normal ranges.
  • I did report problems with headaches. I have been a chronic headache sufferer for my entire life---and I do mean going back as far as I can remember as a kid. But while I may have had some issues with OSA-induced morning headaches, that would have been very difficult to tease out since I also have both episodic and chronic migraines, tension headaches, tmj headaches, sinus headaches, and rebound headaches all of which have different triggers and can occur in the morning, or the afternoon or the evening or (when they're bad) at night and be severe enough to wake me up.
Because I had no daytime sleepiness and no discernible brain fog issues and I am of normal weight, it's not a surprise the doc did not suggest that I have a sleep test done until I reported that hubby had told me about seeing me stop breathing and the changes in my snoring pattern.

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Re: When were you first diagnosed

Post by robysue » Sun May 03, 2015 8:51 am

JohnO wrote:
tiredandscared wrote: It would be interesting to see how vigilant health care providers are at finding out SDBs.
I'm not sure what your acronym SDB means -- maybe "Sleep Deprived B*st*rd?"
SDB is the standard medical abbreviation for Sleep Disordered Breathing. It is an umbrella term that includes, obstructive sleep apnea (OSA), upper airway resistance syndrome (UARS), and snoring.

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Woody
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Re: How long did it take before you first got diagnosed.

Post by Woody » Sun May 03, 2015 9:01 am

I think I had it for at least 15 years before I was diagnosed. And at that I diagnosed myself
by tape recording my sleep. I found I didn't snore at all just a lot of silence followed by gasping
for breath. I even had a 2 day hospital stay 5 years before I was diagnosed and the fools
didn't notice a thing.

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Re: When were you first diagnosed

Post by mralaska » Sun May 03, 2015 9:09 am

The first time I ever heard the word "sleep apnea" over 20yr ago I was in managed health care and went to the doctor because my boss was getting mad at me for falling asleep during meetings. The doctor did not ask many questions. He took a peek down my throat and then told me I had a condition known as sleep apnea that causes me to lose sleep all night and the only cure was to lose weight or go under the knife but I was too heavy to qualify for surgery. Snoring was mentioned only as a possible side effect and never really registered. He did talk about throat collapse and arousal.

I asked him what he saw in my throat to indicate I was over-weight. He replied he was going by my symptoms and that he did not see anything but according to my scale weight I had hidden fat deposits that were causing the problem and that they could not see them without actually operating. Although my weight was not on the low end of what is/was considered normal at the time I knew my body had unusually dense bone structure that fooled the scales a bit and I actually was underweight, looked gaunt, and felt weak.

The doctor said I had to lose 10 more pounds before my insurance would pay for the surgery. He showed me the requirements chart which had a single number by each height displaying a 6' person was not eligible for treatment if over 160lb or some ridiculous number like that. I dismissed him as a quack and never really thought about it again. My boss accepted the diagnosis, which turned out to be correct after all (to my surprise years later), and allowed me to skip more of the meetings (which in my defense were really boring). The prognosis I never followed up on.

I dealt with the sleepiness by spending more time in bed, trying to stay healthy once in a while, napping along side the road, or sneaking into the men's room or storage room for power naps while writing it all off to the progression of age and trying to live too young. Just about anyone lucky enough to spend time with me in deep sleep mode would mention the snoring in various contexts but I ignored comments suggesting I should see a doctor or that I sound like I am going to die sometimes. One long term GF was happy to hear me snore and said it made her happy I was alive. Another spent our whole relationship with her back against the wall kicking me onto my side and bringing home anti-snoring devices which never worked. It was not until lately that I lost another sleep-mate due to the condition but this one was a bit different. She complained about needing her sleep for work, but she did not even use the word "snore". She said I had sleep apnea even worse than her dad so she knew she could not get used to it.

After that statement finally sank in [along with my symptoms increasing to a point they were approaching intolerable] I thought about the doctor telling me I had sleep apnea so I googled it which led to a machine being purchased off craigslist a few days later and brought me to my current stage of self-therapy. No doctor available to me any more so the diagnosis was over 20 yr but the treatment started a couple weeks ago.

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49er
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Re: How long did it take before you first got diagnosed.

Post by 49er » Sun May 03, 2015 9:18 am

As soon as I saw a sleep doctor in 2011 regarding the possibility of sleep apnea, she ordered a home study test which diagnosed me with moderate apnea. I can't complain about any delays because I never gave any reason for my PCP or former psychiatrist to think I had sleep disorders.

I do feel when the Remeron I was taking quit helping with sleep, that might have been an indication that perhaps I needed a sleep study. But at the time which was 2006, sleep apnea wasn't as well known in my opinion so both the psychiatrist and I just assumed it was a case of the med pooping out.

Now I do want to say that anyone currently seeing a psychiatrist for the first time who specifically complains about sleep issues should definitely be screened for sleep disorders and that it shouldn't be assumed that they are secondary to mental health issues like depression and anxiety.

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Re: When were you first diagnosed

Post by JohnO » Sun May 03, 2015 9:20 am

robysue wrote:
JohnO wrote:
tiredandscared wrote: It would be interesting to see how vigilant health care providers are at finding out SDBs.
I'm not sure what your acronym SDB means -- maybe "Sleep Deprived B*st*rd?"
SDB is the standard medical abbreviation for Sleep Disordered Breathing. It is an umbrella term that includes, obstructive sleep apnea (OSA), upper airway resistance syndrome (UARS), and snoring.
Thanks robysue.

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Re: How long did it take before you first got diagnosed.

Post by squid13 » Sun May 03, 2015 10:26 am

I never heard of sleep apnea until July of 2011 when my new doctor heard my problem of being tired all the time, so he ordered a sleep test. After I new what sleep apnea was I realized that I've had it since 1977. I was in the hospital recovering from neck surgery and had to sleep on my back and would wake myself up snorting like a pig and gasping for air, I'm a left side sleeper so when I'd normally sleep I'd just sore and stop breathing but wouldn't gasp for air like I would if I slept on my back which I never do, how many years before that had it started I don't know but my wife said I snored very load, but from 1977 to 2011 is 44 years, so I'd say 44 plus years. I sleep very well now and I have seen a world of improvement in my overall health and stamina. I use to take 20 MG of Vasotec twice a day for blood pressure, now I take 2.5 MG twice a day and hope to stop it soon. Can't sleep without my machine now cause it doesn't seem normal without it.

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Re: How long did it take before you first got diagnosed.

Post by Krelvin » Sun May 03, 2015 10:42 am

I know (now) that I most likely had OSA early, sometime in my early 20's. I had the same symptoms then as when I was diagnosed though I wasn't nearly as tired all of the time because I was young. Been married 34 years and my wife complained for most of that time that I snored loudly and stopped breathing. But, it really wan't anything I brought up to my PCP which I saw rarely.

It wasn't until much later around 10-12 years where it was becoming more noticeable. I had a serious problem driving any length of time without getting very sleepy at the wheel, was having trouble concentrating and was tired all of the time.

It was me that brought up the possibility of sleep issues with my dr at the time, and I had to insist on at least a basic test before anything was done. The first sleep test was an eye opener and when I was done, I recall driving home and thinking "I've got to get me one of those things".

I think things have changed since then. I've had several inqueries by heart specialists over the past 4-5 years asking if I had have sleep checked, etc.. and my current PCP asked on my very first visit.
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Re: How long did it take before you first got diagnosed.

Post by chunkyfrog » Sun May 03, 2015 10:47 am

At least twenty years. I know because I had the symptoms at least that long.
When I first suspected that I had it, I was in an HMO, where I was given what I told was a "sleep test",
basically an EEG/EKG while I was put to sleep for an hour or so with an injection. (Probably a narcotic).
I was given a "clean bill of health", and subsequently suffered for an additional 19 years before I had a REAL PSG.

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Re: How long did it take before you first got diagnosed.

Post by ephraimh » Tue May 05, 2015 12:06 am

have probably had it since mid-20s, i.e, 30+ years ago. I married in 2000 and my wife diagnosed it based on her experiences with grandmother's apnea.

I got a sleep study in 2002 the diagnosis was official.

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Re: How long did it take before you first got diagnosed.

Post by tiredandscared » Tue May 05, 2015 12:38 am

I think it's horrendous that people would go between 1 to more to more than 20 years before being diagnosed. I think an efficient practice of routine screening with a simple oximeter with a recording function aswell as excluding other health conditions that lead to oxygen desaturations, would definitely strongly warrant a further step in investigation of sleep apnea.

But anyway keep the stories coming.

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Re: How long did it take before you first got diagnosed.

Post by bwexler » Tue May 05, 2015 2:04 pm

When I had my first physical after joining Medicare, in September 2010, the doc diagnosed AFIB and sleep apnea. He told me I had to go to the ER immediately and he would have a cardiologist meet me there. He did not want me dying in his office. I had not even heard of sleep apnea at the time.
I now recognize my symptoms, sleepy at the wheel, falling asleep when reading or watching TV, for at least 10 years prior. I also recognize the symptoms in my sister and her husband who have no interest in doing anything about it.
My brother in law, after a couple years prodding his doctors was finally tested and now has a PR 560 which he uses 2-4 hours a night, one month on one month off as the whim strikes him.

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