New user here.....so far, so good.....just sharing

[aaronrkelly]

Im 32 years old, Id say Ive been undiagnosed for over 10 years. Last year I went in for a surgery on my ankle (caused by a motorcycle accident). After the surgery they observed me over night. In order to be released I had to have a certain oxygen level.......and to get that I had to be kept awake because every time I went to sleep my oxygen would drop, the machine monitoring me would beep.....etc. Finally to get my level to average enough so I could go home they put me on oxygen and kept me awake.

They demanded I go get a sleep study ASAP. In true denial/cant be inconvenienced fashion.....I didnt. Hell my ankle was full of titanium and I had shit to do.....ehh, I will get to it later.

1 year and 4 months later (which was 4 weeks ago now) I finally decided to go. Sleeping all the time, falling asleep during the day....always felt like crap.....same old story really.

Go to regular doctor....tell symptoms - he schedules a specialist visit.

Go see specialist in neurology......tell symptoms and take a few quickie tests - he schedules sleep study.

Go to sleep study........take sleep study and they advise they will forward test data back to neurologist for review.

Called up my neurologist to make an appt so he can review that data and tell me whats what - the office said "eh will just skip it, where are you getting your equipment we will just forward the info and script to them" - ahh, OK......guess that saved me some $$$$.....would have been nice to have some of the data though (and actually I have excellent insurance cause that first neurology visit only cost me $13).

Now to me this seem like ALOT of hoops but hey, I got there.....just seem like it took a month. Im all prepped by some of the bad experiences here to have to fight to get a decent machine with my supplier.......and so it began, I walk into Hammer Medical.

Talk to the main guy (not sure what his title would be) Michael. This guy turns out to be awesome. Hes an older guy, highly intelligent and really knows his stuff. I wasnt taking notes but he mentioned he worked research regarding sleep in a previous job.

My script says CPAP at 10......hes fairly pissy that my doctor only gave him the script and not the sleep data......he wanted to see it all not just what to set the machine at. I do need to get ahold of that data......itd be really nice to have.

To start off with he says they have Phillips Respironics System One APAP machines and thats what he gives everyone even if the scrip calls for just CPAP. Score one.....

Then I ask how big of a deal would it be to get a ResMed S9 AutoSet. Absolutely no problem......he will order it that day and have it 2 days later......would I like to take a Respironics home while I wait. (I decided not to, it was only 2 days so no big deal). The ResMed cost me the same as the Phillips (Im guessing because they inflate the prices so much to the insurance company a few $$$$ doesnt mean much....but hey, I cant change the business - just work with it). I pay $38 a month for 13 months for the machine.

The machine comes in.....he calls me and I go get it. He shows me how it works etc......sets me up with a nasal mask (cause thats what the scrip said.....and at this point Im clueless about what I need) but advises me I almost certainly will go thru more than a few masks before I find one that works good.....and not to worry just come back and he will set me up.

First night.....nasal mask doesnt work for squat.....after about a half hour of sleeping I open my mouth......and the air leaking wakes me up. Rinse and repeat all night.

........so I go back in with my nasal mask. I try on a bunch of full face masks and we decide on the Mirage Quattro. The old mask goes back to the company and he says it will not cost me a thing.....great. Again when I leave he reiterates feel free to come back if that mask doesnt work.....it may take some time to find the right one.

So far nights 2 and 3 are great.....when I sleep on my side the mask leaks a bit sometimes.....but it never wakes me up. Im thinking a pillow might be the correct course of action for that issue. I have some slight irritation on my nose from the mask (which I think is from needing to adjust it a bit).

Honestly Im noticing a big difference in just those 2 days.....and Id really like to think its honest and not just the placebo effect. I wake up and instead of laying around trying to get up.....I just get up. I stay up all day with no problems and then I find myself getting tired only at bedtime (although I seem to be REALLY tired).

Im hoping it all really is just that simple.

Only problem I see in the future....traveling.

Now I wont bat an eye at tossing this machine in the bag and taking it with me to a motel or relatives.....no problems there at all.

The problem is my passion/hobby is motorcycling and I put ALOT of miles on in a year. My bikes 3 years old and has 80K miles.....so I ride about 25K miles a year, give or take. If Im staying with someone or at a hotel the machine wont be a problem.....cause I ride a big touring bike (and sometimes pull a trailer) so Ive got the room to spare.

......but Id say 90% of the time I sleep outdoors.......like pull my bike behind an old abandoned building and sleep on the ground in a blanket.......leaned up against the wall of a gas station.......or even on a picnic table in a park. I usually will do this for 3 or 4 hours......a couple times a day when I get tired. It lets me really put the miles on. I generally prefer to ride hard and see lots of stuff. Last trip I rode from Iowa to New York and back to Iowa thru Canada......in less than 48 hours.

There is NO way in heck a PAP machine of any kind is going to be feasible in these situations. Now maybe in the future they will make handheld PAPS that run off lithium batteries......but were not there yet. The only solution I see is

A) give up traveling this way

B) not use a PAP machine when Im on the road

A......well lets just say it'd be like asking someone to give up their left arm......hell riding my bike across the desert in the middle of the night.....or thru the mountains on a curvy road.....thats the reason I live.....aint happening.

B.....seems like my only option......and Id guess a few days here and there without the machine "probably" will be a non issue.....on the other hand waking up dead kinda puts a kink in your plans for riding that day.....lol.

[ughwhatname]

You better come up with a Plan C, because Plan B should be thrown out the window.

Congrats on the ease at which you are adjusting. Kudos to your DME, too.

Maybe your biggest adjustment is in the way you ride...

[cosmo]

Ditto on plan C.

1 motorcycle accident was not enough?

[Goofproof]

Plan "C", Buy a XPAP like the one they tried to give you, it's more power friendly ( 12volts d/c) get a car starter with a cig power port, it will last up to two nights. you will need a 12 volt power cord, you maybe could recharge it from the cycle, take care to not overcharge it.

PROBLEM Solved! Jim

[aaronrkelly]

I see on SecondWind they have a ResMed Tango.....has heated humidifer and it states its very small and perfect for travel....only $179.

I may very well look into something like that.....if I can run it from the bike it may work out well.

[Goofproof]

I see on SecondWind they have a ResMed Tango.....has heated humidifer and it states its very small and perfect for travel....only $179.

I may very well look into something like that.....if I can run it from the bike it may work out well.

Resmed are odd ducks, they Don't run on 12 volts d/c.... also the power pins are different from the pack. Jim

[eeckel]

Consider Provent. It's an emerging OSA therapy with a least one multisite randomized controlled trial demonstrating efficacy. It is controversial because of how efficacy was defined in that research study. The FDA has approved it but third party payers do not reimburse-yet. You will not truly know if it works for you without doing a sleep study while using it. Search for Provent here to read pros and cons about it. You can purchase it from our sponsors.

I have mild OSA and Provent is my preferred therapy during travel. I don't travel like you, but I travel internationally and have used it in high altitude places like the Andes mountains. I sleep well and feel good in the morning. A huge travel advantage is that one night of Provent is about the size of a band aid. It is completely non controversial when going through customs or dealing with under educated TSAs. I only use it for travel because it is a bit expensive.

[Sheriff Buford]

Get a hold of your doctor and TELL them you WILL be by to pick up the data from your sleep study. Its your records. If you educate yourself, which I think you should, you'll need the data. Sheriff

[BlackSpinner]

Yes Plan C
Buy a second hand cpap machine,
Keep travelling but stop where you can plug in and tune out. Yes it takes a bit more planning but that can be part of the challenge. It means more time dreaming and google surfing before you leave.
But both you and other travellers (including all those little kids) will be safer on the road.

Congratulations on finding a truly rare gem - a competent, helpful and honest DME!!!!! Make sure to spread their name.