Last study came back negative.. Should I retest?

[400ex]

Hello everyone, I had a sleep study done about a year or two ago. It came back negative, I was shocked because it seemed as if i'd be a likely canidate for sleep apnea. I am heavy, have a wide neck (about 18.5 inches) and I do have a wide frame, as well as a deviated septum.

I wake up 3-6 times in the middle of the night, I sleep on my belly because I can't sleep on my back however I do find myself on my back with my mouth wide open at times. My throat hurts time to time.... When I wake up I have no energy and sometimes I feel like I have been hit by a truck or I spent the night drinking. I am not motivated to do anything anymore sadly and I do believe I have sleep apnea. I have been told I snore, when I have people sleeping over and sometimes they say its light other times they say it is uncontrollable.

The test I took 2 years ago said I had insomnia because I never fell into rem sleep but fell into stage 2 sleep. What I find weird about this is it felt like I never fell asleep at all and when I do feel that way I always feel better than actually falling into a deeper sleep. I was forced to sleep on my back for a sleep study and I can never fall asleep that way.

My question to the CPAPtalk community, should I make another appointment with the pulmonologist and ask for another sleep study based on these issues I am still having and obvious concerns. I don't believe my apnea was seen because they didn't allow me to fall into a deep sleep.

[Pugsy]

One of our new members Lazer sounds a lot like you.
Snores, fatigue, etc...AHI was not diagnostic for OSA.
You might search the forum for his posts...they are close within the first 3 or 4 pages for sure as he is current.
I imagine he will stop by and offer his experiences as well.

Also...there are other sleep disorders besides just OSA...like UARS Upper Airway Respiratory Syndrome...you might google it and see what I am talking about.

And yes, if you didn't get much sleep in your sleep study and say you happen to be like me who has 5 times more events in REM sleep than in Non REM sleep..they might have missed something.

[jnk]

Can you post the exact wording of any conclusions reached, as written by the doc, from your first sleep study? Posting it to another site (with identifying details of you, your doc, and lab removed) and then linking to it here would be great. The purpose of a lab diagnostic sleep test is to see if there are indications you could benefit from a particular treatment, so that is why insurance pays for finding out. So, if you want to know if you feel better on PAP therapy, the only way to get insurance to pay for that is to get certain results on certain tests. However, IF that approach isn't working for you, some people have been known to buy their own CPAP machine/mask/etc. on craigslist, try PAP therapy at 10 cm or so for a night or two, and then see if they feel any better. I, of course, would never recommend that approach. (There are even a few medical situaltions that could make that dangerous for someone to try.) I'm just saying that it has been done by some when medical testing hasn't worked out well, for one reason or another. Sometimes a person has to fly under the radar in order to fly at all.

[400ex]

Can you post the exact wording of any conclusions reached, as written by the doc, from your first sleep study? Posting it to another site (with identifying details of you, your doc, and lab removed) and then linking to it here would be great. The purpose of a lab diagnostic sleep test is to see if there are indications you could benefit from a particular treatment, so that is why insurance pays for finding out. So, if you want to know if you feel better on PAP therapy, the only way to get insurance to pay for that is to get certain results on certain tests. However, IF that approach isn't working for you, some people have been known to buy their own CPAP machine/mask/etc. on craigslist, try PAP therapy at 10 cm or so for a night or two, and then see if they feel any better. I, of course, would never recommend that approach. (There are even a few medical situaltions that could make that dangerous for someone to try.) I'm just saying that it has been done by some when medical testing hasn't worked out well, for one reason or another. Sometimes a person has to fly under the radar in order to fly at all.

I dont have the the documents with me, but he did classify me as an insomniac and I need better sleep hygene. I don't believe this one bit, when I am tired, I am tired and fall asleep. It's staying asleep that is a problem, I have problems sleeping in other peoples bed other than my own. I am going to go see him again because it's getting ridiculous. My brother and my uncles all have sleep apnea and I have been feeling pretty horrible for the pass 3 or 4 years on a daily basis because of sleep.

[kteague]

I too would be interested in the specifics of your test results. A couple of my studies used the terminology "technically suboptimal" because they weren't able to capture what is generally considered the worst case scenario - supine while in REM. Without that, a negative result could more be more accurately termed a nondiagnostic result. They couldn't prove you have it, but they didn't prove you don't either. If you do another study, talk to your doctor beforehand about having an acceptable medication on hand in case you need it. Also, ask if it is ok if you fall asleep in your usual position and have them tell you to turn over after you doze off. If you think it would help, take your own pillow. If I were symptomatic, I'd want to know the full story. Many report that having OSA can look like insomnia, including me. Doesn't hurt to work on sleep hygiene, but that won't change if you have sleep apnea or not. Also won't hurt to assess things like meds or other sleep disorders for other possible contributors to you inability to stay asleep. For instance, I have a limb movement issue when I sleep, as well as joint pain, that interfere with staying alseep. If I were a betting woman, with your family history and symptoms, my money would be on OSA.

[jnk]

. . . he did classify me as an insomniac . . . It's staying asleep that is a problem . . .

Yep. Sleep maintenance insomnia often is caused by conditions such as OSA, so it is good to have a successful sleep study to find out. As the Mayo dudes put it:

"In some cases, insomnia is caused by a physical condition such as sleep apnea, restless legs syndrome or chronic pain. Treatment for an underlying condition may be necessary for insomnia to get better." -- http://www.mayoclinic.com/health/insomnia/AN01611

I have problems sleeping in other peoples bed other than my own.

Sounds like the hypersensitivity that often accompanies UARS, which is sort of the flip side of OSA. In bad cases of OSA, the person sleeps through just about anything--even long stretches of not breathing at all. But in UARS, the brain/body fights the bad breathing by arousing the person out of sleep, or out of deep sleep, to keep the breathing from being worse, even before an apnea or a hypopnea occurs. It is the arousal-trouble that keeps the sleep from being refreshing. PAP may, or may not, help with that problem. For some people, it appears that UARS over time can turn into OSA as the brain gives up and lets the breathing get worse. For others, their brain keeps them sort of stuck at the super-sensitive UARS stage to protect the breathing at the sacrifice of the sleep. That's one theory, or way of looking at it, anyway.

Even though the sleep hygiene stuff, as listed above at the Mayo link, may not be the root cause of the problem, that stuff can still sure be a BIG help with getting the best sleep possible for some who have UARS-leaning sleep-maintenance problems, from what I hear.

[400ex]

I woke up this morning and it felt like I had cotton balls stuck in my nose I couldnt believe I was breathing through my nose like that. It was difficult for me to breath awake! I used my netti pot and it opened me up a little bit. I am going to call first thing in the morning on Monday. Thanks everyone.

[Suzjohnson]

Ask about doing a home sleep study. I know several people who have done that and are very happy with the results. Not only is it a lot cheaper but you have a better chance of getting a diagnosis because you are sleeping in your own bed. This won't identify UARS so if you feel this might be an issue for you, I am glad you have having a lab sleep study. Perhaps a sleeping tablet?

Suz

[lazer]

Hello everyone, I had a sleep study done about a year or two ago. It came back negative, I was shocked because it seemed as if i'd be a likely canidate for sleep apnea. I am heavy, have a wide neck (about 18.5 inches) and I do have a wide frame, as well as a deviated septum.

I wake up 3-6 times in the middle of the night, I sleep on my belly because I can't sleep on my back however I do find myself on my back with my mouth wide open at times. My throat hurts time to time.... When I wake up I have no energy and sometimes I feel like I have been hit by a truck or I spent the night drinking. I am not motivated to do anything anymore sadly and I do believe I have sleep apnea. I have been told I snore, when I have people sleeping over and sometimes they say its light other times they say it is uncontrollable.

The test I took 2 years ago said I had insomnia because I never fell into rem sleep but fell into stage 2 sleep. What I find weird about this is it felt like I never fell asleep at all and when I do feel that way I always feel better than actually falling into a deeper sleep. I was forced to sleep on my back for a sleep study and I can never fall asleep that way.

My question to the CPAPtalk community, should I make another appointment with the pulmonologist and ask for another sleep study based on these issues I am still having and obvious concerns. I don't believe my apnea was seen because they didn't allow me to fall into a deep sleep.

Hello 400ex,

Sorry I'm catching your post a bit late as I was out all day. I just wanted to also ask you a few questions as you seem to match a lot of what had been going on with me in your description. I'll also include a few suggestions for you but I'm far from knowing what many of the other members know on here at this point as I'm only a couple months in myself.

Do you happen to have a primary doctor that you see regularly or is treating you for any other conditions? The reason that I ask is that in my case, my PCP has been very familiar with my different sleep related issues through the years and while my original "In-Lab" sleep study back about 5 years ago didnt' indicate any apnea events to qualify me for a diagnosis, I had a very similar experience with my sleep stages during testing and thus it was his opinion that I not only didn't reach the appropriate stages of sleep to rule out OSA but my ongoing symptoms of complaining of never feeling rested during the day, hard to get out of bed in the mrng, depression and anxiety, and prolonged and loud snoring still very likely indicated a possible connection to OSA and that I would benifit from CPAP/APAP therapy.

Has your doctor offered you to take one of the in-home sleep studies yet? These are far cheaper in most cases and are also covered by most insurance companies as far as I know. I had my second sleep study done through this method as per my PCP's request at the beginning of this year. It was a company called "Novasom". They ship you the equipment and you wear it over a 3 night period at home in your own bed. It was much more easier to get through being in your own environment that you're used to and it would likely help you be able to get into sleep better so the monitors can possibly detect your apnea events. In my case, while this one still didn't get enough of an AHI score to qualify me through normal insurance requirements, it did prove that I have a disruptive snoring pattern (very likely fragmenting my sleep) and also detected that I get very little to no REM sleep. This was enough to keep my primary physician in my corner in seeking to improve my sleep and still pursue the CPAP.

Do you have any other symptoms such as high blood pressure, depression/anxiety, ect...? You don't necessarily have to but if you do, it is somewhat likely that being on CPAP could help improve those conditions if related to having OSA.

I would suggest personally that you keep bringing up the lack of quality sleep with your physician, get an idea if he/she knows or seems to know about the benefits of CPAP therapy, and look into getting one of the "in home" studies done.

Keep us posted!

[chunkyfrog]

Are you in an HMO?
I was 20 years ago; they gave me a general anesthetic and hooked me up to a polygraph (or some such nonsense)
Sent me home an hour later with a clean bill of health. --apparently according to THEIR definition of apnea.
I don't know if that could happen today, but you never know.

[retrodave15]

Your story sounds similar to mine. Last September I went to my primary care doctor complaining about insomnia, waking up for what seemed to be every 30 minutes, depression, and overall feeling like crap. The kicker for me was when I was driving to work on morning I did not remember almost half of my 44 mile morning commute. My stress level was off the charts, and I had recently ended up in the ER with chest pain and palpitations. My primary care doc sent me for a sleep study, which was the worst night of sleep of my night. I wish I could find the study, as it showed my AHI as .06, but I only slept for a total of 3 hours and never hit REM sleep. He looked at the study and sent me to see a sleep doc. When she looked at the study she had a hunch that since I never hit REM sleep, that I had apnea, and sent me back for another sleep study. During this study she wrote it as the 1st half at a pressure of 6, and the second half as a titration if necessary. After some adjustment to the CPAP and taking Sonata, to help me get to sleep, I had these results: At a pressure of 6 my AHI was 11.5 and during the titration phase I ended up on a pressure of 8.5. Her impression of the study was that I never got to sleep deep enough to collapse the airway in the first study. I felt pretty good after that study and actually went to work.

She had enough data to get a 3 month trial with my insurance, United Healthcare, which started last November. She tried to get an auto for me, but United would only approve a regular CPAP, but I was able to get the PRS1 with AutoIQ and after running 2 of the 1 month trials my pressure is now at a 10.5 and my AHI is about 1.5 - 3 now. After 6 months I feel great, I have cut my dose of lipitor in half, the depression and stress levels are controllable. The only issue I have had is now that my brain is more awake - my ADHD started to get pretty bad again, so about 6 weeks ago I went back on meds for that. I had been on Ritalin back in the 80's and 90's, but quit taking after I got out of college. I now take Straterra and I have much better focus and do not have the zombie effects that ritalin had on my creativity.

[400ex]

Hello everyone, I had a sleep study done about a year or two ago. It came back negative, I was shocked because it seemed as if i'd be a likely canidate for sleep apnea. I am heavy, have a wide neck (about 18.5 inches) and I do have a wide frame, as well as a deviated septum.

I wake up 3-6 times in the middle of the night, I sleep on my belly because I can't sleep on my back however I do find myself on my back with my mouth wide open at times. My throat hurts time to time.... When I wake up I have no energy and sometimes I feel like I have been hit by a truck or I spent the night drinking. I am not motivated to do anything anymore sadly and I do believe I have sleep apnea. I have been told I snore, when I have people sleeping over and sometimes they say its light other times they say it is uncontrollable.

The test I took 2 years ago said I had insomnia because I never fell into rem sleep but fell into stage 2 sleep. What I find weird about this is it felt like I never fell asleep at all and when I do feel that way I always feel better than actually falling into a deeper sleep. I was forced to sleep on my back for a sleep study and I can never fall asleep that way.

My question to the CPAPtalk community, should I make another appointment with the pulmonologist and ask for another sleep study based on these issues I am still having and obvious concerns. I don't believe my apnea was seen because they didn't allow me to fall into a deep sleep.

Hello 400ex,

Sorry I'm catching your post a bit late as I was out all day. I just wanted to also ask you a few questions as you seem to match a lot of what had been going on with me in your description. I'll also include a few suggestions for you but I'm far from knowing what many of the other members know on here at this point as I'm only a couple months in myself.

Do you happen to have a primary doctor that you see regularly or is treating you for any other conditions? The reason that I ask is that in my case, my PCP has been very familiar with my different sleep related issues through the years and while my original "In-Lab" sleep study back about 5 years ago didnt' indicate any apnea events to qualify me for a diagnosis, I had a very similar experience with my sleep stages during testing and thus it was his opinion that I not only didn't reach the appropriate stages of sleep to rule out OSA but my ongoing symptoms of complaining of never feeling rested during the day, hard to get out of bed in the mrng, depression and anxiety, and prolonged and loud snoring still very likely indicated a possible connection to OSA and that I would benifit from CPAP/APAP therapy.

Has your doctor offered you to take one of the in-home sleep studies yet? These are far cheaper in most cases and are also covered by most insurance companies as far as I know. I had my second sleep study done through this method as per my PCP's request at the beginning of this year. It was a company called "Novasom". They ship you the equipment and you wear it over a 3 night period at home in your own bed. It was much more easier to get through being in your own environment that you're used to and it would likely help you be able to get into sleep better so the monitors can possibly detect your apnea events. In my case, while this one still didn't get enough of an AHI score to qualify me through normal insurance requirements, it did prove that I have a disruptive snoring pattern (very likely fragmenting my sleep) and also detected that I get very little to no REM sleep. This was enough to keep my primary physician in my corner in seeking to improve my sleep and still pursue the CPAP.

Do you have any other symptoms such as high blood pressure, depression/anxiety, ect...? You don't necessarily have to but if you do, it is somewhat likely that being on CPAP could help improve those conditions if related to having OSA.

I would suggest personally that you keep bringing up the lack of quality sleep with your physician, get an idea if he/she knows or seems to know about the benefits of CPAP therapy, and look into getting one of the "in home" studies done.

Keep us posted!

Thank you for the response, I use to have high blood pressure, I use to be 340 pounds and I am now down to 275 pounds. My blood pressure for the most part is 120/80-85.

The most thing I notice during the day is that my brain feels exhausted, I dont pay attention and when I do it goes through one ear and out the other, I am not motivated to do anything anymore. So I do feel somewhat depressed when I look back at my life a little bit (I am only 24) but this did start 3 years ago. I am seriously considering calling a new doctor or seeing the one that did my sleep study and telling him I am feeling worse and that Insomnia has been resolved AND further voicing my concerns to him.

This is where I got my sleep study done last time --- http://www.hmgpc.com/index.php/services ... rders.html

My insurance is United Healthcare as well and for the most part they have not questioned me about anything and have been treating me very well.

[lazer]

Thank you for the response, I use to have high blood pressure, I use to be 340 pounds and I am now down to 275 pounds. My blood pressure for the most part is 120/80-85.

The most thing I notice during the day is that my brain feels exhausted, I dont pay attention and when I do it goes through one ear and out the other, I am not motivated to do anything anymore. So I do feel somewhat depressed when I look back at my life a little bit (I am only 24) but this did start 3 years ago. I am seriously considering calling a new doctor or seeing the one that did my sleep study and telling him I am feeling worse and that Insomnia has been resolved AND further voicing my concerns to him.

This is where I got my sleep study done last time --- http://www.hmgpc.com/index.php/services ... rders.html

My insurance is United Healthcare as well and for the most part they have not questioned me about anything and have been treating me very well.

Highly recommend doing that!

[tiredmama]

Several years ago I had a sleep study where I had a horrible time falling asleep and slept horribly (kept moving and detaching wires, etc.) and the study showed some apnea events but not enough to treat. Better sleep hygiene was recommended. At the time, I was working at a job where I needed to wake up at 6:30 (or 7 at the lastest) and I am a night owl who rarely functions well if up before 7. My body naturally falls asleep between 12-1 most nights and that was leaving me with less hours of sleep than I needed.

Several year, two kids, and 20-30 extra pounds later, I had another study and had many low-oxygen events. I had an easier time falling asleep during the study this time. The tech mentioned many people take something to help them sleep, and when I returned for my titration study, I took benadryl to help me overcome the weirdness of falling asleep there. My problem has always been falling asleep initially...after that I may wake up but I'll go right back to sleep if nothing else is keeping me up. After kids, I assumed my fatigue was due to being up with them at night...years without sleeping through the night does take its toll...and we didn't think it was odd til I finally had nothing external waking me many nights and still was exhausted. I think back on how much it could have helped me to be diagnosed and treated earlier. And I really wonder if I had slept better during that first test if the results would have been any different.

If you feel like there is something amiss, press on for more answers. I wish I had!

[400ex]

I just got back from a new doctor, he believe I have a serious apnea issue no doubt and is baffled with the insomnia diagnoses I had a year/two years ago. I have a sleep study scheduled June 30th, which I will try to push to get one earlier. The issue I have with this is I will be flying overseas for 4 weeks to visit family and the test results wont be in for 2 weeks and I leave July 8th. If I need a CPAP I would love to have the device with me when I am gone.

This doctor and whole center seems 100x better then the one I went too.