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hi all -

here to report on my sleep doc appt yesterday...

i was there almost 3 hours between meeting with the resident, main doc, & tech....i had no clue it would be such a long day but felt good about it overall. i've been reading up on sleep apnea/study info all week too to educate myself a bit in advance. a whole new world to explore. but anyhoo.

i actually was able to get ahold of my study results the day before the appt which meant i could read up more in terms of what may/may not mean much and be better prepared to hound the docs.

it ends up that overall my apnea isn't in the "severe" category b/c i have no problem when i'm in early sleep stages. the problem is that in deep sleep the apnea creeps in and is "severe"....hopefully at least part of the reason behind why i wake up so much and whatnot.

they seemed a bit intrigued with me but couldn't really figure out a connection with the dysautonomia. or any of my other wild ideas behind the possible "whys." and they were surprised that i was as open/willing as i was about using the CPAP machine. i guess a lot of the younger folks they see (which isn't many) are very hesitant or even flat out refuse....even prefering surgical possibilities right from the get go.

i'm more than happy to do anything - especially noninvasive - to potentially improve how i feel, my health, ability to breath, etc, etc. i only reacted strongly when the resident mentioned the possibility of weight loss. and the main doc nixed that anyway for a variety of reasons, not excluding that it likely won't make a difference as i'm just barely "overweight" and had the same problems when i was more than 30 lbs lighter. and i was in MUCH worse shape health-wise then, i.e. hardly able to eat with talk of feeding tubes. yikes. so while i'd love to be a bit slimmer or at least toned, i much prefer where i'm at to where i was. but anyhoo. you can imagine the resident's love of my ramblings.

none the less, the doc thought CPAP was the best route anyway so was glad i was amenable. i got fitted for my mask with the tech before leaving and should hear from the DME folks this week about the actual machine. then i'll use it on a low setting for a week or two before going in for another sleep study - with machine - to set the exact pressure needed to keep me breathing, and hopefully sleeping best.

i don't want to hope too much & get disappointed but i'm hoping this at least helps with my energy levels/functioning a bit. i'll take whatever i can get, ya know?

so...that's the scoop.

soon to be breathing better,

B) melissa

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thanks for the scoop!

czar will be wondering about this machine, eh?

i don't even know what a cpap machine really looks like or how it works. can you sleep on your side or only on your back with it??? like, does it make rolling over and stuff hard? i may need to look online at a picture. is it noisy?

i am sure these are all trifles really...since sleep is what the goal is at this point! i really hope it brings you some relief.

it's not the same as a new body...i know that...but it's something...and i so hope that it will help you get some rest. we all know how much getting sleep can help!

i remember when i first saw my pots doc and i walked in wearing a skort with my compression hose in view...when i took one of my pee breaks during my appt. he said to my parents that he can't get most of teh young folks to wear them. and i, like you, would rather do that than a surgical or more drastic thing!

i can imagine that most young people wouldn't want to do the cpap machine...but most of them also have not been through what you have trying to find answers and solutions. and you have already dealt with so many things that young people don't typically, like the wheelchair, etc. am i making one bit of sense? i hope so.

and the weight loss thing, frankly that really irks me! b/c of course we would like to be a little slimmer...but he really didn't need to add salt to the wound! and sorry, but i wish it was as simple as losing a few pounds! it just doesn't explain the extent of your problems! okay, done with rant.

back to my book on tape!

when will you get the machine?

here's hoping you are sleeping better soon!

love, em

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Guest Belinda

AHH..glad your going to use the cpap machine worked wonders for my sister who has sleep apnea,

what a disturbing thing to wake up all the time. Been there done that..

As for the weight issues, I am slightly overweight too and feel much better not being my old too tiny self.

Ahh, the next thing you know they'll be telling us to gain more weight, yo-yo's.

Well I am glad your appt. went well and I hope that you start sleeping like a baby..


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Hi Melissa!!

I'm struggling to keep up with everyone since I've been so sick myself so I hope I haven't missed anything else. I do think about you often and hope you are getting some answers and better cooperation from Dr's these days!

I think the CPAP is a good thing to try. I was told once that my breathing interruptions at night were mild however, they also acknowledged that have a messed up ANS system that even though the disruption was "mild" in their view, that it could be enough to aggravate my condition. The mistake they made with me was putting me at a high pressure level on the machine from the start and it was too much for me. I'm glad to hear they are starting at a low level with you because it takes a while to get used to the machine and that lower level will help.

Please keep us posted and I so very much hope that this will help you.

Are you getting any rest or relaxation these days? Are you out of school on break?

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hi melissa,

i am glad to hear that the cpap can help you sleep better. like you and em, i would try anything (non invasive) to get some better (yep i wear compression hose with a short/skort as well em, even in my wheelchair :lol: ).

i really hope you can get yourself in a comfortable position with the cpap mask, so that when sleep comes it stays!!!!!!! keep us posted,


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i got my machine today. Mom says i should wrap it up and give it to myself for christmas <_< hopefully it will be a good thing though....the RT who brought it was like "you sure don't look like a sleep apnea patient." yeah, well...guess i'm special like that.

corina - thanks for the cheers. i definitely have been seen in my wheelchair with my hose on many a time B) the way i see it that's the least of my problems...

jane/kristen - i hope you're having a better week. and i certainly hope the machine helps fatigue too. thanks for cheering me on.

belinda - glad to hear that the cpap was such a success for your sister. hopefully i'll follow in her footsteps!

pooh - i'm sort of on "break". or rather i should be but still have an incomplete in one of my classes and thus a big paper to finish. ggggrrrrrrr. when you tried the CPAP did you have a titration study that indicated you needed a high pressure? otherwise it makes zero sense that they would have started you on it...

em -

thanks for all the smiles about czar and the not quite a new body but something and the like :lol: czar's been sniffing but nothing more at this point. and yeah, don't even get me started on the weight thing....obviously way overweight isn't a good thing for health but i guarantee i'm healthier at a few pounds "over" than last years' unable to keep anything but liquids down.

and to answer your questions about the machine itself...it's not as loud as i expected actually. no more than some humidifiers or air filters perhaps? it works by blowing air into the airway and thus preventing the collapse (or blockage for some) of the airway, and thus the problems with being able to breathe. does that make sense. the machine isn't too big & fits on the shelf on my night table & includes a heated humidifier for the air in order to keep the nasal passages & mouth/throat from getting irritated.

there are SO many mask options to choose from & i'm lucky that i have 2 different masks to play around with (one from insurance & one free "sample" from sleep center) - one is a nasal mask that covers around the nose & the other is "nasal pillows" that go more in the nares (holes in my nose). the second is a lot less cumbersome but the blowing air is a lot more noticable so we'll see how they go. after reading on some apnea forums it truly does seem to be a matter of personal preference & fit. and to further appease your curiousity about how the whole contraption looks, here's some links to pictures (scroll down on each page):

machine w/ humidifier: http://www.cpap.com/productpage/respironic...humidifier.html

nasal mask: http://www.cpap.com/productpage/comfortgel...espironics.html

nasal pillow: http://www.cpap.com/productpage/resmed-mir...low-system.html

the machine is then attached to the mask by a 6ft hose of sorts. and all the equipment has protocals for how & how often to clean & the like....like i need more equipment to take care of. but hey, if it helps with the sleep my complaining will stop immediately so i should keep my mouth shut.

you all will be sure to hear from me as if/when the magical sleep comes. my mom's jokes aside i'm hoping it's my christmas present!

:lol: melissa

Edited by Sunfish
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YEAH melissa! I'm glad that you got your sleeping cpap machine before christmas!! here's to amny restfull nights sleep!!


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the rt has no right to give you his/her opinion on how you look. s/he has NOTHING to do with you, other than bring you your machine and stuff. next time try to say something like: i'll take that as a compliment, but i'd rather want you to get me my stuff than give your opinion about my looks. and smile.

lately i've been told by an ergotherapist that it's better to have pots than ms, i told him that there are people dying because of dysautonomia and that it's not his job (as a healthy person himself) to judge about when i would be better off (my neighbor has a very mild ms, he can work, walk and do what he likes as long as he rests enough, i would love to change places if it wouldn't be to sad to even think/talk about it). good luck with the cpap!!!!!


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