Waiting for my first titration study....

echo · Post by **echo** » Wed Jul 18, 2007 4:39 pm

I must say, this is a fantastic group! I have read as much as I can, in preparation for my first CPAP machine... my lungs, heart, and brain are trembling with excitement as I count down the days until I get my CPAP (11 days to go....)!

I got diagnosed aaaages ago (it was back in May but it feels like forever now, to know you have the answer and just can't quite get your hands on the treatment).

Anyway just wanted to say thanks to everyone who's posted here, the information has been invaluable! I feel a bit more grounded in reality about the expected outcomes, and know now that it might not be an overnight miracle, but I'm still excited! The (humor) posts of mikemoran have been brilliant, to say the least!

And for some info on me---
I suspected sleep apnea for a long time, but because I moved around from country to country a lot, and the waiting lists for sleep studies are so long, I didn't actually get a proper overnight sleep study done until a few months ago. However, 3 years ago i started using a mouth splint ("Snorex"), and the first few months were like heaven - I could actually sleep properly, I got TIRED at NIGHT (that had NEVER happened to me before; I always dreaded going to bed), and I woke up RESTED. Alas, the device isn't that durable, and after increasing allergies and weight gain (that no matter what I do I can't seem to lose, and no energy for exercising barely enough energy for work), it doesn't work anymore. So I can't WAIT til I get my CPAP machine. And I'm an engineer so I definitely gotta get me one of those machines with the downloadable data etc

The hospital says they use the Puritan Bennet GoodKnight brand - looks to be quite good from what I've read. Not sure what kind of mask I'll need, but from what I've read, I'm thinking I should stock up on all the different kinds of masks, in advance, just in case (And maybe a backup CPAP machine as well, and from what I've read, I'm not the only one ). So on average, how many machines do all of you own??

Anyway, thanks again for the info, and the laughs, and to everyone here in this fantastic group!

cheers

- oh yeah, forgot to ask about the whole pantyhose thing? now i finally have a use for all my pantyhose with runs???

- and even better, my boyfriend is already busy with plans to build a hermetically sealed CPAP-room. though i guess it wouldnt really work, hmmm... will let you know the results

sharon1965 · Post by **sharon1965** » Wed Jul 18, 2007 4:54 pm

welcome, echo

so glad you'll be off on the right foot...knowledge is power and you have certainly gleaned plenty of that

you're going to do great!

best of luck
sharon

drummergirl410 · Post by **drummergirl410** » Wed Jul 18, 2007 5:05 pm

Hi, and welcome!

I'm not too far from where you're at. I had my titration study last night. The phaze that you and I are in I think is the hardest for me... waiting to actually get the machine at home and use it! I'm very encouraged coming out of last night. Now it's just waiting... again... for the doc. to get back in touch and do the necessary stuff to get the machine for me. You already know how many days! Cool! The sleep tech. told me last night that it could be as many as ten but as few as three. I'm praying for three!

Hope all goes well with your study and be blessed!

echo · Post by **echo** » Wed Jul 18, 2007 5:05 pm

Sharon, thanks for the encouraging words!

BTW I read your last post, I am very sorry to hear about your bad experience recently. I can certainly sympathize, as I also have many stories about docs that think they know best -- but always trust yourself and never underestimate your own ability to know your own body, even if they don't believe you. I know it's frustrating (like when i went to a doc 3 years ago for certain problems, and instead of finding the root cause of my health complaints he just recommended Prozac.). Anyway I don't mean to ramble, what I wanted to ask you about if you've tried any alternative therapies for the Fibromyalgia.. I haven't been diagnosed with that specifically, but I have had battles with allergies, candida, and other similar autoimmune conditions, and have had good success with some "alternative" therapies -- you've probably already heard about a lot of them, but anyway if you're interested pls feel free to post to me privately.

thanks!
asli

echo · Post by **echo** » Wed Jul 18, 2007 5:09 pm

hey drummer girl, congrats! Ohhh I feel your pain.

Good luck becoming a hosehead ASAP

I think the doc said I could take the machine home with me the next day, I think i'll just absolutely die if I have to wait another 3 to 10 days after that! heh heh

Thanks, and I hope you get your equipment sooner than later!!

drummergirl410 · Post by **drummergirl410** » Wed Jul 18, 2007 6:09 pm

Hi, Echo!

Thanks so much! That's awesome, taking the machine with you after the study! It just hit me that if the dr. office called tomorrow with result they might be able to sneak in the DME or HHC, whichever they do, on Friday. Praying, but not holding my breath. If not then, hopefully by this time next week for sure. Funny thing is my titration was origanally scheduled for this coming Sunday. I told them to keep me on call if there were any cancellations and it worked! I would have gone mad waiting until Sunday! Had a bad bout with my sleep this past weekend and was so relieved when they were able to bump me up a few days!

Thanis again, and let us know how everything turns out when you do go!

echo · Post by **echo** » Thu Jul 19, 2007 8:39 am

Brilliant drummergirl! I've been on a waiting list too but no luck, glad that you had some luck though! Keeping my fingers crossed for you....

Snoredog · Post by **Snoredog** » Thu Jul 19, 2007 9:21 am

My suggestions are as follows:

1. Understand you MUST sleep for your PSG to be successful. IF they awaken you about 2AM to put on a mask, don't fight it, know if they do that you most likely have OSA and the putting on of the mask means they need to attempt to titrate you for finding your pressure. In order to find that pressure, you must accept therapy, fall back asleep and reach REM sleep. If you don't reach REM they cannot find your ideal presssure and you will have to go back for another PSG to find it. That can delay your therapy for over 1 month.

2. If you have any difficulty falling asleep at all at home, be sure to take a couple TylenolPM's with you and some water and take them in the parking lot before you go in, don't even tell them you took them. I would avoid any decongestants such as Claritin-D as they contain chemicals known to skew your sleep architecture. Tylenol should be okay.

3. Your best bet is trying a nasal mask, but make sure it fits you properly (hard to determine if it is the first time you've put one on). Too small and it will ride down your nose too far and put "outside" pressure on your nose which can lead to nasal congestion just as if you squeezed your nose from the outside. Sleep labs like to use masks that are smaller than you actually need, it is easier for them to stop any leaks which can be critical in finding your ideal pressure.

About the only thing you will find out from your first PSG is:

1. it will be more difficult to sleep there than at home (so take the TylenolPM in the parking lot is you suspect the strange place will keep you from sleeping), but understand the PSG is needed to see everything that disturbs your sleep including non-OSA events like PLMD and/or spontaneous arousals. It is used to make the diagnosis, but you must sleep for that to happen.

2. A copy of your sleep study PSG will be sent to your doctor, they most likely won't give you any information from that night unless you are a repeat customer, by then you already know you have OSA and they can share the results. Be SURE to ask your doctor for a copy of that PSG result at your first appointment. If CPAP is prescribed, be sure to keep a hard copy of the actual prescription, in fact "demand" that you have the original script from the doctor's pad, don't let some nurse say "I'll fax it over", you WANT that script in your hand when you walk out the door, you will need both those items down the road.

From the first PSG about the only thing you will know after leaving is if they tried a "mask" on you during the night, you can pretty much be assured you have OSA.

echo · Post by **echo** » Thu Jul 19, 2007 10:52 am

Hi snoredog,

Thanks for the suggestions. Actually I already had my first PSG in May (sorry I didn't make that clear). I had an AHI of 35.5, with an arousal index of 38.5, and spent only about 12% of my sleep time in REM sleep. (Felt like i slept only 4 hours but actually made it to 5.5 hours...)

In two weeks I will go back for a two-day, overnight study. There's a small language barrier for me here in Belgium, but if I understand correctly, on the first day they will do the nap tests (how is that relevant to the diagnosis?), then at night they will fit me with the CPAP and determine the right pressure, and I can take it home with me the next day (fingers crossed). They also said that on the second day I would be tested for cardiac and pulmonary functions. Sounds interesting and thorough!

Some people haev mentioned getting their charts and things from the PSG study - how important is that? I have the dictated report which gives me all the stats (Sleep architecture, ventilator pattern (AHI index), O2 saturation, heart rhythm and video results (all 'normal'), and the final diagnosis/recommendation (Severe OSA with nasal CPAP for treatment).

I also found out that they use the GoodKnight CPAP. Not sure what masks they have at the hospital, but I imagine they will let me try on one or two first?

From what I hear the whole insurance thing is really a nightmare in the U.S.! In Belgium i've found the whole process quite easy (though i obvisouly don't actually have a machine in my hands yet). But i do plan to order a second backup machine, so I will get the script as you say! BTW, what does the script need to say? Just the pressure setting?

Thanks again for all the wonderful info!!!
p.s. I like your idea about the tylenol PM.. I already have difficulty falling asleep normally so that will really help!

Asli

Guest · Post by **Guest** » Thu Jul 19, 2007 11:05 am

Remember that the PB GoodKnight brand machines are not all FULLY data capable. Make sure you get one that is.

drummergirl410 · Post by **drummergirl410** » Thu Jul 19, 2007 12:10 pm

echo wrote:Brilliant drummergirl! I've been on a waiting list too but no luck, glad that you had some luck though! Keeping my fingers crossed for you....

Thanks so much! It's already past lunch here and no call from the doc. so far. We've been out of the house a good bit this morning too, but I came back in to check the phone just in case. You might just want to call the sleep lab sometime just to check. Keeps your name in their heads a bit, esp. if you call every couple of days. A bit of a hassle but worth it of you're anxious about getting it sooner. Keeping my fingers crossed, ans praying. for you as well!

cflame1 · Post by **cflame1** » Thu Jul 19, 2007 1:56 pm

a nap test (at least the one that I had) is called an MSLT... it can be used to determine if you also have narcolepsy or ideopathic hypersomnia.

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Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips