Second diagnostic sleep study - confused

Hi,

I was diagnosed with mild OSA in November 2009 and have battled with CPAP therapy since mainly due to aerophagia and never finding a mask that has been comfortable. But the aerophagia is the main problem. In March 2010, my doctor said I had given it a good shot but sometimes it just doesn't work for some, especially since it was mild and I had a lot of snoring awakenings, limb movement awakenings. So, it was stopped.

In January this year, I was diagnosed with another disorder called Craniocervical Instability. Basically, my head is wobbly on my spine due to a previous brain surgery for another issue called Chiari Malformation . . .your brain descends to far into your spinal canal. So, if you are still with me, my Neurosurgeon wanted a new sleep study because the instability can cause Central Apnea.

Okay, I go for the sleep study and get all hooked up. They let me take my Melatonin and Ambien. I could not sleep. I tossed and turned all night! She said if I didn't have 40 apnea or hypopnea events by 2 am then they couldnt start the CPAP titration. Well, I didn't. She said I woke up every time I started to snore and/or my legs moved. She said the
doctor would probably consider it a "failed" sleep study.

What does that mean? She said I did have apneas and hypopneas but didn't get into a good sleep in order to start the therapy.

I still have my CPAP machine so I have tried it again. . . More aerophagia!!! I have a different mask that she gave me that night. I think it's the FX Quattro.

Follow up appt with sleep doc 08/01/11.

Thanks for any input on a "failed" sleep study. I also still have my tonsils and adenoids. Would anyone advise seeking the advice of an ENT doc?

Thanks!

Hello. . .

Since I have my follow up appt tomorrow with my doc, does anyone have any suggestions for questions?

Initially diagnosed in Nov 09 with mild OSA, 2nd study this July which tech says he will probably say is a "failed" study..due to lack of sleep due to snoring and limb movements. Apneas and hypopneas were present still. I need sleep. I'm worried I will be written off.

Thanks,
Shelley

I wish I remembered better, but I thought I read an article online somewhere that some sleep study folk are starting to have at-home sleep studies. I really don't know how that works, but you have to think that you'd get a better result if you were sleeping in your own bed, in your own environment, etc. (even with all the #@*@! extra wires attached to your person!)

FizzyWater wrote:I wish I remembered better, but I thought I read an article online somewhere that some sleep study folk are starting to have at-home sleep studies. I really don't know how that works, but you have to think that you'd get a better result if you were sleeping in your own bed, in your own environment, etc. (even with all the #@*@! extra wires attached to your person!)

I heard the same thing... from a sleep tech. She said more and more people are opting for having it done at home in your own bed.

are you getting treated for limb movements?

I had the first part of my sleep study at home with equipment from my doctor's office. It was a headgear unit with nasal cannula attached. I was pleased about this option because I rationalized I would sleep better at home and if I didn't have OSA than I wouldn't have to go into a sleep lab at all. I did not sleep well that night even though I was in my own bed. I am not sure about the quality of the info from that test, but they did confirm I have sleep apnea and sent me to a sleep lab for the cpap titration which was a full night. I didn't sleep well there either! Imagine that.

I did a home sleep study with an Itamar Watch Pat. Two probes go on two fingers and the device straps to your arm (newer models are wrist watch sized). Very easy to sleep normally with this. It records a lot of data but may not record your leg movements. It will tell, however, how many apneas and hypopneas you are having, your O2 sats and much more.

Not all home study tests are alike, so you need to explore carefully. Finding a doctor who will work with a home study set up and making sure insurance will cover it can be challenging. I was able to do the home study through my Kaiser HMO which doesn't even offer in-lab sleep studies.

FizzyWater wrote:I wish I remembered better, but I thought I read an article online somewhere that some sleep study folk are starting to have at-home sleep studies. I really don't know how that works, but you have to think that you'd get a better result if you were sleeping in your own bed, in your own environment, etc. (even with all the #@*@! extra wires attached to your person!)

My sleep center will do that for $300-400 (compared to $1,300-1,400 for an in-house study). The problems are my insurance considers it experimental and will not cover it. The other problem is if it does show the patient needs treatment it does nothing to indicate the levels needed so you may have to pay for an in house study for titration. Since I was sure I had a problem (I was falling asleep at work, at the table, sitting down, even in the shower) I went in and did a split study rather than spending the money for the home test.

Thank you for all the input and replies. I am not being treated for limb movements yet but definitely going to ask and discuss that this afternoon! Felt like I beat myself up last night!

I will also check out the other home study possibilities . . My insurance is difficult so it would be hard to get through.

Hi Shelley: Try the ultimate chin strap for snoring...it is designed to help lessen your snoring...closes mouth yet keeps air passages open just by its unique structure...there is also one for sleep apnea...same principle...if you have no problem breathing your nose when you lay down, definitely the sleep apnea would work for you. If you are having trouble falling asleep because of your snoring as one issue, please give the ultimate chin strap a try...an inexpensive way to receive some relief..check out website.....

So, how did the appointment go?

Sorry Guys for the delay in posting about the appointment. . . I spent the week trying to adapt to the ideas he had to help me sleep more before the next study. . . So, here goes with the new plan and results:

First, the study revealed I didn't sleep well. I have numerous limb disturbances and snore disturbances with some apneas and hypopneas but not enough early enough in the study to start the CPAP titration to determine where I am at now. Also, my oxygen level fell to 86% which I know is not terrible but not good either.

Remember, this study is to see if the skull instability I was recently diagnosed with has changed the sleep apnea in anyway. Okay. Since, I have nerve and muscle pain already. My doc thinks that instead of taking Ambien that I should start Neurontin (400mg) at night to calm the nerves and Valium (5mg) to get my muscles relaxed and see if this doesn't allow me to sleep longer and then come back for another sleep study in about 3 weeks to see if they can then do a CPAP/BIPAP titration. I already take several medications to deal with nerve and muscle pain which they (doctors) are well aware of. Neurontin is just another one added to the list. Also, since I'm struggling terribly with the CPAP treatment due to aerophagia, he said to not use it until the 3rd study can be done.

Unfortunatly, when I woke up from my drug induced hangover each day this week, I was nauseated, dizzy, wobbly and still tired. I'm not sure I slept. I guess I did but it was like I said, drug induced certainly not natural. . . I'm going to be calling on Monday. I'm not convinced that this is a good plan for me.

Neurontin is very hard to get used to as it has to build up in your system and it's side effects seem to be lasting for whatever reason. Could be reacting with the numerous other medicines I'm taking.

Have a peaceful night everyone

You say aerophagia was the killer problem that you just could not conquer when trying to do CPAP.

Can you give us some idea of what kinds of things you and/or the doctor tried to do to help alleviate the aerophagia?

Because I don't want to insult your intelligence and list a whole bunch of things to try if you've already done them and they simply did not work.

But one obvious one that may not have been tried, given the M Series CPAP Pro machine listed in your signature, does come to mind: Switching to an APAP or BiPAP might help. Was the idea that an APAP (in a tight range) might possibly be easier on your stomach ever explored? And what about BiPAP? The idea behind switching to either of these machines is that the overall average pressure your stomach is subjected to can be much lower than just plain CPAP or CPAP with C-Flex turned on. In my case, the switch to BiPAP finally got the aerophagia down to something I could tolerate on a nightly basis and on many nights, I don't really have it anymore.

Hi Robysue,

Yes, I can. I have tried adjusting pressure up and down, using the ramp feature and not using it, raising the height of the head of my bed, taping my mouth because I'm a mouth breather, taking an medication for GERD (per doc's order) in case it's silent GERD, even had an endoscopy last year (nothing found), several different masks, chin straps (all different types), and some of these at the same time even:).

Now, for the APAP/BIPAP, I thought he would just suggest coming in for a titration study and use the BIPAP machine but he wanted to get me sleeping longer first and then come in for the study using the BIPAP. I feel like it's doing things backwards.

Does anyone think I'm thinking wrong? Anything I missed with the aerophagia? I tried to do research and try all things. I even tried the Falcon (sp?) position. Having trouble sleeping in this position.

Open to any and all ideas!!!