Newbie - what questions should I ask?

I recently consulted with a sleep specialist, who ordered a sleep study. I'd like some advice on what I should ask at the study, and at my follow-up appointment. I've been reading a lot of posts here and articles in the Wiki, but it's a bit overwhelming. I really just want a list I can print to bring with me to my appointments.

And I apologize if someone else already asked this, or there is a handy list somewhere that I haven't found. If you are aware of such a thing, please just direct me to it. No need to repeat!

On a personal note, I have to admit, my biggest fear is that the test will show I do not have SA, and that the symptoms are all in my head, or "just how I am", like I've believed for years. If I get an SA diagnosis, I'll have a clear path forward for improving my health, which has me so excited I can hardly wait until my study.

Some background info on me:

- 36-year-old female, married, mother of 2
- software developer (sedentary occupation)
- healthy diet, regular light exercise as weather/seasons permit
- not overweight, though on the high end of healthy weight for my height

SA indicators:

- Family history (Dad)
- GERD
- Migraine
- daytime fatigue
- daytime sleepiness (scored a 13 on activities rating test the sleep doc gave me)
- waking headaches
- have woken up gasping
- always wake up tired, no matter how much sleep I get
- memory problems, recently worsening
- recently sewed tennis ball onto back of my pajamas to prevent back sleeping, which has improved symptoms
- recent blood work rules out anemia or thyroid problem

SA contra indicators:

- normal neck size
- do not snore
- husband has not noticed me stop breathing

MamaGeek wrote:I recently consulted with a sleep specialist, who ordered a sleep study. I'd like some advice on what I should ask at the study, and at my follow-up appointment. I've been reading a lot of posts here and articles in the Wiki, but it's a bit overwhelming. I really just want a list I can print to bring with me to my appointments.

The sleep study itself is not the place to ask questions about your medical history and/or the test results themselves. The tech will not be able to give you any official information. So when you are at the study, the questions should relate directly to making sure you are comfortable enough to sleep and that you know what is going on.

Some questions for the tech who runs the sleep study:

• 1) Is my study just a diagnostic study or is it a split study? Is there a chance that you might wake me up during the night to put a CPAP mask on me?
  
  2) What should I do if I wake up needing to go to the bathroom?
  
  3) What should I do if I wake up thirsty?
  
  4) What should I do if I get too cold or too warm to sleep?
  
  5) What should I do if I can't seem to get comfortable enough to get to sleep?
  
  5) When will my results be sent to my doctor? How can I obtain a record of the sleep study report, including the statistical data and the summary graphs?

If you are someone who really wants to know everything, ask the tech what each of the wires and monitors are for when you are being hooked up.


Some questions for the follow-up appointment:

• Can you show me the sleep study report and explain the statistical data and the summary graphs to me? Can I have a copy of the sleep study report for my records?
  
  If the test is positive for OSA you should ask:
  • 1) Please explain the significance of my AHI number. What is the difference between an obstructive apnea, a central apnea, and a hypopnea? Do you know what criteria the lab uses to score the hypopneas?
    
    2) Did I have O2 desaturations associated with my respiratory events? How far did my oxygen levels drop? Is this a big concern?
    
    3) Did I have respiratory related arousals? If so, how many? And how big of a problem is this?
    
    4) Do you think I should schedule a CPAP titration study? Or would you be willing to prescribe an APAP for a week or two of home titration?
    
    5) Would you be willing to write a prescription for a full efficacy data CPAP or APAP for my permanent machine? If the answer is, "No", you should ask: Why not?[/b
  
  
  If the test is negative for OSA you should ask:
  • Does the lab score Respiratory Effort Related Arousals (RERAs)? Is it possible that I might have Upper Airway Respiratory Syndrome (UARS)? Why or why not?
  
  
  Regardless of whether the test is positive or negative for OSA, you should ask
  • Did the sleep study reveal any other problems with my sleep? If so, what are they? How might those problems be treated? If the test reveals no abnormal sleep problems, then ask: If there is nothing wrong with my sleep, what else might be causing my symptoms?

[/list]

(Robysue beat me to it, i would never argue with her. But I typed all this up, so i will post it anyway.)

Welcome! Sorry you have to be here though.

The link below is a very short intro to various types of sleep studies. I presume you will have the first one, the PSG.

http://www.nhlbi.nih.gov/health/health- ... pst/during

The lab should give specifics, such as where, when, etc. they should tell you the details of their procedures, it varies some.You can usually bring your favorite pillows and your teddy bear.

Don't expect the techs to tell you much about your results. They aren't supposed to, those get sent back to the referring.

Biggest "thing" during your first test will be if you "qualify" for a split night study. If you have Apnea, if they get enough data early enough, or if your oxygen level drops low enough, they may wake you up and put you on a cpap machine and spend the rest of the night trying to figure out the best settings for you. They should explain much of this to you as they are wiring you up.

A lot of what happens depends first on how quickly you can fall asleep and how much data the techs can get. Just because they don't put you on a cpap machine doesn't mean you don't have SA, they might just not have enough time to do that phase. So don't assume you don't have SA if they don't do the split night. They did not do it for me, even though I have very severe SA, they simply ran out of time because it took me forever to fall asleep.

So, first step will be to take the test. Then, depending on the doctor, you may or may not speak to the doctor. Some will call you in in a week or two or three or...... Others will just contact you to setup another test if you have SA and did not do the split night study. That second test will be a Titration study, to determine what type of machine and what settings will effectively treat you.

Whenever you get to see the doc, I would ask:

1. Do I have SA? What kind, obstructive, central, or complex. please explain.
2. Do I have any other sleep problems, such as restless leg syndrome, or other?
3. What is your plan for treating me?
4. Did my oxygen levels drop? How much? What does that mean?
4. What type of machine are you prescribing? What settings?
5. I would TELL the doctor (assuming you have SA) that I will be monitoring my treatment and therefore will require a machine with full data capabilities. I want a copy of my complete sleep study, and my prescription. I will be happy to have your recommendations about what DME's you recommend but I wish to make the final decision as to which I use myself.

Hope this helps. My fingers are numb.

ETA. Lots of good info in the "Announcements" section above. Browse that area when you get a chance.

I would add that you might have AHI that is too low to qualify you for insurance coverage of your unit. Determine ahead of time that you can, in fact, pay for it cash. Then, if the doctor says you have OSA but don't qualify for insurance, you can get a copy of the script and get it from an online seller for far less cost than you could generally get locally (unless buying used). I BARELY qualify for Medicare to cover mine, but I had already prepared for how I was going to pay for it if I didn't qualify. Do check with insurance however - many just need a script - they have no other 'qualifications.'

Thank you so much! I wouldn't have known any of this! I will print this all to bring along with me.

Well, I went for my study last night. I had a terrible time sleeping. it took forever to fall asleep. I kept waking up, and each time it took forever to fall asleep again. The tech said I got zero REM. i came home and slept two hours. The tech said the doc sometimes orders a second study if there's not enough data, and they give you a sleep aid to make sure you sleep. But the ttech hought the doctor would probably not do that in my case, though he didn't say why. I should hear from the doctor in about a week to make a follow-up appointment.

I'm so worried that the test showed nothing, and I'm back to square one. Did anyone else have a sleep test like that?

Yes, almost everyones sleep test is a little like you had. Most of the time they still gather sufficient data for a diagnosis.

Oh, that's a relief. The way the tech was talking, I felt like I failed a test, or it was just a big waste. He didn't say that,and he was very nice and friendly, but I still got that impression. I guess I was just being anxious. I can't wait to find out the results!

MamaGeek wrote:...The tech said I got zero REM... the doc sometimes orders a second study if there's not enough data, and they give you a sleep aid to make sure you sleep. But the ttech hought the doctor would probably not do that in my case, though he didn't say why...

My interpretation is that the tech was able to capture some data but until the test was scored wasn't sure it was enough. Not to mention, they can't say anyway. While REM sleep would need to be seen to get a full picture, many people don't reach REM in their study but still have enough going on during non REM for a diagnosis. Not having answers is the hardest thing. Hope the time till you get your results passes as quickly as possible.

In both of my studies, the first part (without a mask) I got 0 REM sleep. While you don't say, I assume you didn't have the part of the test where you used a mask?

Krelvin wrote:In both of my studies, the first part (without a mask) I got 0 REM sleep. While you don't say, I assume you didn't have the part of the test where you used a mask?

No. The tech told me starting out that he might bring me one, but that at this center, the threshold for that is pretty high, so just because it's not used, does not mean you don't have a problem.

My doctor called me with the results. I will still be meeting him in person, but he didn't want me to have to wait to find out what the study revealed. My sleep efficiency was only about 45%, but he said they got enough data for a positive diagnosis. My AHI was "normal", but my RDI was "extreme", about 40-50 per hour. I will have having a CPAP titration study on the 20th.

I will ask for a copy of the actual report when I meet him in person, but it's a relief to have a way forward!

Oh, my doctor also said I have Upper Airway Resistance Syndrome (UARS), not Obstructive Sleep Apnea (OSA), but that the treatment is the same (CPAP).

I just had my CPAP titration study. I was given a sedative this time, considering how poorly I slept the first time.

I slept much better than during the first sleep study, but was it the CPAP, or the sedative? I also went to sleep with a headache, and woke with a migraine, which is not unusual for me. Of course I felt bad on waking, but was that because CPAP didn't help, or because of the headache?

I've met people who said that after a split study, spending just half the night on CPAP, they felt worlds better. I was hoping I'd have that experience. I've also heard it can take weeks on CPAP before you see any improvement in symptoms, so maybe that will be me.

I guess I won't know until the sleep report comes back and gets interpreted whether CPAP helped me or not. On the upside, I did find it very easy to breathe through the CPAP machine; I had no problem with exhalations at all, like others have reported. And the sleep tech said I started waking up when the pressure got up to 9, so that 8 is really the max for me. He also told me I had two good REM cycles, unlike last time when I no REM sleep at all. At the least, it will give the dr more data to look at.

Hi MamaGeek,

People that felt worlds better on first night of CPAP seem to be the lucky ones! Unfortunately I'm not one of them... Many people seem to be in the 2-4 weeks range. I think there is a poll on that subject somewhere on this forum. Personally, with the proper machine and setting, I'm starting to see good improvements after 2 weeks and feeling better and better every week after that. Still not where I want to be but A LOT better!

The fact that you had no problem breathing and sleeping with the CPAP is really a positive sign for the success of your therapy. But I'll make sure to get a machine that can detect RERA since, according to your results, you don't have apnea per say. Machine's detection of RERA is not the same as RERA detected in lab, but in your case it would probably be the only way to get an idea if your therapy is going well or not, beside your day time symptoms of course.

Good luck