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LolaBelle Offline

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Posts: 56
Joined: May 2013

Machine: Resmed Autoset S9
Mask Type: Nasal mask
Mask Make & Model: Wisp
Humidifier: H5i Climate Line
CPAP Pressure: 7
CPAP Software: ResScan

Other Comments:

Sex: Female
Location: Pennsylvania

Post: #1
Smile My Story
[/size][/font]Ok So im new to the whole sleep apnea thing now since my story is so darn long (sorry about that) Im copying and pasting it from another apnea board i wrote it on (im switching to this one because it seems a lot busier Shy )

"My story as to how I was diagnosed.....
So I got married in august 2012, was under a lot of stress and pressure and one morning in September my husband woke me up for work (we used to have the same sleep schedule wake up at 6:30am work at 8am and I usually fell asleep at 10-11 every night and crashed on the weekends and slept my 12-15 even 8 hours is never enough sleep for me ) I felt strange I couldn't think I felt like I was in a dream he said I was slurring and I fell over once (my legs were SUPER heavy and weak feeling) the longer I was awake my legs felt better I knew something was wrong I told him and he agreed and I drove him to work (my legs were weak but still functioning it felt difficult to get them in and out of the car though which I’ve never experienced) like they both had heavy bricks on them and my muscles were weak, I drove myself to a walk in clinic( I didn't have insurance yet) they did some blood tests told me I was pre diabetic even though my blood sugar was fine and sent me home... I went to work the next day mean while I was in a living hell, my brain was not functioning anymore... I couldn't remember stuff I felt like someone drugged me, my legs got better the same day and were fine after but I felt mentally impaired which scared the crap out of me I was in anxiety mode and crying for almost two weeks after that, I quit my job which put us in a financial hell for a while and I went to visit my mom I was so out of it ( I just couldn't think I felt like I was in a daze it felt like my mind was in slow motion, like I walk into a room to get a drink and doing that was difficult, I was scared to be out in public cause I felt like I was living in a dream) so my mom picked me up I started getting more sleep and after about a month almost a month and a half of getting my 12 hours of sleep every night (which is how I’ve been since I was little I’ve always needed way more sleep than everyone else even when I wasn't over weight my weight gain didn't happen till I was about 13 and I can’t nap I sleep for a good 5-6 hours and wake up groggy) and I was mostly back to normal but suffering with a lot of fear and apprehension of it happening again, I chalked it up to a nervous breakdown from getting married and just prayed it wouldn't happen again, well it did (about a month ago roughly) well I remember my mom saying she thinks it had to do with my sleep the first time this happened she said I snore and stop breathing a lot so she was constantly checking me and waking me up telling me I need to lay on my side and I just shrugged it off thinking that can’t possibly be it and it’s just my weight and I’m working on it so I’ll be fine soon but there’s no way my sleep has anything to do with it other than I probably wasn't getting enough which contributed to my "nervous breakdown" well anyways I went back home and have been doing computer work which allows me to work whenever I want and my sleeping pattern (which it always tends to do unless I have a steady schedule) started flipping around to sleeping during the day and staying up at night, I have insomnia issues I like to sleep 12-15 hours and then stay awake for anywhere from 12 to 20 or so and then sleep again for a long time but anyways I got myself to staying up all night and basically sleeping only while my husband was at work so for about a good month or two before it happened again this last time I was back to sleeping 6-8 hours, from about 8-10 am to 4pm get up make dinner take care of the dogs do my work stay up all night get him up in the morning and back to sleep during his work shift, well he came home one day I had over slept it was almost 5pm and normally I’m up and have dinner ready by the time he’s home well I was still in bed with my phone alarm going off and I woke up confused and heavy legged again, I didn't go to the doctors because they didn't help me last time, however after we got married and I got sick last time he put me on his insurance so I finally have insurance but anyways the heavy legs went away later in the day again but the brain issues stayed their almost gone again I’m down visiting my mom again but shortly after I came down here I worked myself up so much from feeling mentally impaired and being scared about it that me and my mom went to the ER on the weekend, my mom brought up my sleep thing, they did a pee test and a drug test lol which I suppose makes sense cause of how I told them I felt which by the way even though I’ve been feeling out of it and slow and unable to do even small things and having memory problems and concentration issues and just feeling out of it I appear fine to everyone else I told my ER doc I feel like I should be talking slow or something with how I’m feeling but I’m not anyways he asked how much stress I was under first than when my mom brought up the sleeping issues she sees he didn't even take another look at me he just said ok you have sleep apnea go get a sleep study and that was it so I called my insurance to see where i could go and that was that now I’m here just nervous and waiting my fear is that the sleep apnea didn't cause this, oh also I said this happened twice and that it takes about a good month or so for it to slowly wear off its taken a little longer this time it seems to be sticking a bit more and my memory issues have been a lot worse I feel like I have to re remember stuff I don't normally think about like my husband’s work number I could barely remember it its better now since I’ve been purposely trying to memorize it again but I’ve never ever had memory issues this is VERY unlike me, I’m the kind of person who doesn't even drink because I hate feeling out of it in any way, but anyways this second time it happened I slowly was getting a hair better each day and about a week later it happened again the heavy legs and I felt like it set me back to square one but they happened so close together I just kind of lumped it together, since it takes a good month to get back to my normal self, it doesn't seem to happen when I’m at my mom’s I’ve been sleeping on my side more here mainly cause she tries to watch me as well oh also during both times I watched my blood sugar like a hawk because of the first doctor saying it was pre diabetes but it’s always been normal when I sleep when I wake up after I eat before I eat it’s never been off accept for once when this happened the second time I had eaten a fair amount before I went to bed and when I woke up feeling weird and out of it this second time my blood sugar was 146 and that was probably about 8 hours after I ate, but shortly after I woke up it went right down and I didn't do anything or eat anything also I had just had a physical before this happened and everything came out fine accept I have gallstones which I already knew my ac1 was good cholesterol and whatever else they do oh and one other thing that's worth mentioning is that when I woke up both times other than heavy legs and feeling out of it I felt numb for a little while but it went away quickly that happened both times and also that I had stayed up almost 24 hours I was trying to fix my sleeping pattern hoping that the less sleep I got which I got about 6 hours that I would be tired enough to sleep during the night anyways I’m sorry I wrote a book I’m scared to see how long this is lol but I’m at a loss and sooooooo scared that this isn't from sleep apnea, I’m scared I’ll be treated with my mask and start feeling better and needing less sleep but I’ll wake up feeling like that again and have to suffer feeling mentally slow and out of it for a month and a half again to feel better that's why I’m telling my story I want to know if anyone has heard of or has had something similar, maybe my brain was just so tired it like broke down or something and the extra rest I get at my mom’s makes it better? this whole thing has made me extremely insecure and I pray this is just my sleep apnea since nothing else seems to be wrong with me physically other than gall stones and being overweight and the first time this happened I was a bit stressed but the second time this happened I was happy and was exercising and eating better and things were going pretty good I don't know how you can go to bed feeling perfectly find and wake up screwed up like that? at least it does go away with lots of rest and a little bit of time I asked my sleep tech if he’s ever heard of a story like mine and he said he hasn't but its possibly its sleep apnea related because of oxygen deprivation and also because everyone has different symptoms. Also during my sleep study I guess I was nervous I went in at 9 fell asleep at about 11 or a little before and got up at 5 with one bathroom period at about 2:30 and I didn't have any REM but he said that could be because I was in a strange place I know that when I’m at home and not sleeping as much (6-8 hours) I don’t remember having any dreams but when I get my 12 hours I remember having dreams but I guess my question is Can all that happen with 10-20ish apneas an hour ? I don’t even know how long they are I guess I’ll find all that out when they call me but I don't know anyways sorry for writing a book! Ill end it here

Oh! Sorry one other thing....Every so often I feel like I have to stretch my legs but no matter how much I stretch them its not enough so I move them around and it just feels like I want to sleep and I'm exhausted but my legs need to stretch and move but its not very often only once in a rare while at least that's all I remember I know when I sleep I kick and throw my blanket off me all the time my dog tries to sleep with my but I move too much I actually sleep on the couch a lot because I snore and move around but I don't believe I have RLS because they didn't say anything during my study and I don't think I moved around a lot I was worried about the wires"

Oh and another thing to add im overweight (I think that's why I have sleep apnea but im not 100% sure yet since I haven't been told my results officially just from my really awesome and nice tech) and before I was diagnosed I was and am on a weight loss mission its a permanent change and has been going well it started last September it stopped due to illness (which I believe now was due to my sleep apnea) but am back at it again im 269lbs and my highest weight was 293 that's when I decided to make a change I was getting way too high....Im too young to let this happen and am changing it. Anyways thank you in advance for reading this!

Sarah <3
(This post was last modified: 05-03-2013 04:45 PM by LolaBelle.)
05-03-2013 04:37 PM
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LolaBelle Offline

Preferred Members

Posts: 56
Joined: May 2013

Machine: Resmed Autoset S9
Mask Type: Nasal mask
Mask Make & Model: Wisp
Humidifier: H5i Climate Line
CPAP Pressure: 7
CPAP Software: ResScan

Other Comments:

Sex: Female
Location: Pennsylvania

Post: #2
RE: My Story
Ok so I had my second sleep study since writing my previous post that I copied and pasted from the other board (posted above) and it went well I think Smile the tech said the difference between my sleep was night and day I also felt a bit better (more clear headed and felt like I could breathe better for a while afterwards) after waking up he said I got rem this time which I didn't last time and also that I got into delta sleep which he said a lot of people with sleep apnea never do however here are my questions

I tried on two masks (pilairo and the eson) I only wore one through the night (which was all of five hours cause it took me a while to fall asleep getting used to the mask) which was the pilairo because when I tried the eson on it hurt my upper lip like there was pressure but I didn't adjust it to try to make it fit better and neither did my tech I just put it on when the machine was off and that was it I wish I would've asked to try it a little more to see what it was like and if the leaking was better..

So my experience with the pilairo was this, I liked the idea of having a small pillow basically inflate around my nose it was soft however my problems with it were these

1.) It hurt the inside of my nose it was uncomfortable the longer I wore it and I was moving it and managed to take it off once during the night and I remember doing it even tho I was half asleep and I knew I shouldn't but my nose hurt I woke up and realized what I had done and the tech came in shortly after and we fixed

2.) after I took it off in the morning the tip of my nose hurt I must have a pointy nose Sad my nostrils are apparently small ( I tried on another mask I dunno what but it was nasal pillows and the small was a little too big we ditched that mask because my hair was too slippery)but yeah my nose is long? I don't know all I know is when I touched my nose it felt painful if I itched rubbed or moved it around the tip so I think my nose was being pressed against all night I didn't notice it at the time

3.) This I don't think is a problem just a question he said my leaks were minimal I don't know what my pressure is but he said optimal leaking should be zero but I was between a four and an eight which is ok so my question is I don't know what that means and it got me a little worried because of my next question

4.) I felt air in my right eye all night no matter what I did, I moved the ventilation part away and even after re adjusting the mask and when I mentioned it to the tech he didn't seem to know what I was talking about he moved something on the machine and asked me if I still felt it and I said yes and he didn't really respond so I don't know but now that I think about it was it a leak?

I have no idea what mask to go for ive been watching videos and researching and looking at reviews and ive narrowed it down some im interested in the swift fx and the mirage fx I just am worried about leaks I wish I could've tried on more masks im waiting for my call back to see a doctor I don't wanna get stuck with the pilairo because of the discomfort it was fine for one night but everynight would make my nose sore ecspecially on the inside so I dunno what to do oh one more thing to add he said my pressure wasn't too high so I dunno if that has to do with what masks work better but I have the machine I know im gonna ask for (the s9 autoset) but im lost on the mask part


So heres a couple more random questions

Ive been reading on machines and I want to know which is better an apap or a vpap/bilevel?

What the difference is between an apap and that?

What is the best auto bipap machine?

Is an auto bipap machine good for osa?


(I don't have the money for vpap anyways but I wanna know if its better and Ive been trying to read but some of the info can be really confusing lol ecspecially since Im new to all this but im starting to get the gist of it I have found some good info so far)

I tend to sleep on my side a lot and put my arm under my pillow is there a good pillow for that I should be getting cause I mash half my face into my pillow I like soft mushy pillows but I dunno if that will work with my cpap now generally other pillows end up on the floor so I have one pillow it was a feather pillow and is very soft and mushy now and stays in place fairly well lol ok I think ive written WAY to much now thank you to anyone who actually reads all this <3 I will post if I have any other questions but I think I covered them all...

Diagnosis as far as I know(still haven't seen a doctor to go over it all yet)
Type of sleep apnea OSA
Moderate- average of 15 apneas per hour

Sarah <3
05-03-2013 04:55 PM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,988
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #3
RE: My Story
Welcome to the forum LolaBelle. You do not have to be in REM sleep to dream, and so it is possible to dream regardless of the number of apneas you're having. If you get the apnea index down with CPAP therapy it's likely you'll experience a change in your dream patterns.

The different types of machines are used for different purposes. The one you'll get will depend on several factors, including the prescribed pressure. Just make sure you get a fully data-capable machine.

See http://www.apneaboard.com/wiki/index.php...ne_Choices

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-03-2013 04:56 PM
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LolaBelle Offline

Preferred Members

Posts: 56
Joined: May 2013

Machine: Resmed Autoset S9
Mask Type: Nasal mask
Mask Make & Model: Wisp
Humidifier: H5i Climate Line
CPAP Pressure: 7
CPAP Software: ResScan

Other Comments:

Sex: Female
Location: Pennsylvania

Post: #4
RE: My Story
(05-03-2013 04:56 PM)Sleepster Wrote:  Welcome to the forum LolaBelle. You do not have to be in REM sleep to dream, and so it is possible to dream regardless of the number of apneas you're having. If you get the apnea index down with CPAP therapy it's likely you'll experience a change in your dream patterns.

Thank you for welcoming me! Smile and I didn't know that that's interesting I know for a long time I wasn't having dreams hardly ever at least not that I remembered anyways
05-03-2013 04:58 PM
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LolaBelle Offline

Preferred Members

Posts: 56
Joined: May 2013

Machine: Resmed Autoset S9
Mask Type: Nasal mask
Mask Make & Model: Wisp
Humidifier: H5i Climate Line
CPAP Pressure: 7
CPAP Software: ResScan

Other Comments:

Sex: Female
Location: Pennsylvania

Post: #5
RE: My Story
Thank you for the link I just bookmarked it Smile All information is greatly appreciated
05-03-2013 05:29 PM
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trish6hundred Offline

Advisory Members

Posts: 6,430
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #6
RE: My Story
Hi LolaBelle,
WELCOME! to the forum.!
Sounds like you have had quite a time of things.
I know all of this can be overwhelming but hang in there.
You have come to the right place for help with your CPAP therapy.
Hang tight for more responses to your questions.

trish6hundred
05-03-2013 06:30 PM
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cbramsey Offline

Advisory Members

Posts: 900
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage FX
Humidifier: ResMed H5i with ClimateLine
CPAP Pressure: 6 - 12
CPAP Software: ResScan

Other Comments: Supreme Overlord of Web Darkness

Sex: Male
Location: NC, USA

Post: #7
RE: My Story
Welcome to the forum!!! We are glad you joined us!!! Welcome

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-03-2013 08:01 PM
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Shastzi Offline

Advisory Members

Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #8
RE: My Story
Hi Lola,

Welcome

That's pretty much how it starts with some people. The apnea always begins to take it's heavy toll.
I am glad you're headed down the right path.

Cheers & good luck!

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
05-03-2013 10:21 PM
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Tez62 Offline

Monitors

Posts: 837
Joined: Feb 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro
Humidifier: Resmed
CPAP Pressure: 5-15
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Melbourne, Australia

Post: #9
RE: My Story
LolaBelle, just reading your initial post, you know alot of your symptoms and illness's are typically linked to sleep apnea. I think if you go into this with a positive attitude and use your CPAP correctly some or all the things may lift. It's good that you want to lose weight just for your general health and hopefully can stop the onset of diabeties. The weight think is a catch 22, when people have sleep apnea they are tired and don't exercise becasuse they are too tired too and as in your case maybe sleep too much so with the lack of movement they put on weight. They sometimes also need to eat the wrong types of food for emotional eating, more sugary foods. They get a sudden fix if you like but it isn't good for them in the long run. Hopefully once your on CPAP you may have more energy to be able to exercise and you will need a good meal regime, I don't like saying diet because if you eat the right foods and exercise you should lose weight, anyway good luck and keep us updated on your progress.
05-04-2013 01:57 AM
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iSnooze Offline
Apnea Board Proofreader
Advisory Members

Posts: 239
Joined: Feb 2012

Machine: Respironics PR System One C-Flex+
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage Micro
Humidifier: System One Heated Humidifier
CPAP Pressure: 11
CPAP Software: SleepyHead

Other Comments: also use a Comfort Gel Full Mask by Respironics

Sex: Female
Location: Indiana

Post: #10
RE: My Story
Hi LolaBelle,
like you I noticed that my ability to think and function normally was going downhill and I was sleeping a lot but never felt rested. I'm so grateful for my cpap machine. I never want to feel that way again.

I don't know what to tell you to stop the air from the mask leaking into your eye. I do know that it often takes trying several masks to find the one that works best for you. Everyone's face and pressure tolerance is difference. What works for one isn't guaranteed to work for others.

I've never tried nasal pillows but from what I've heard is it takes a little bit of time to adjust to. You're not used to having some strange item in both nostrils all night long. If might want to try Lansinoh, which is a product used while breastfeeding. Almost every pharmacy or Wal-mart type stores carry it. It would be in the baby section.

Let us know what happens after you meet your doctor and go over the results.
05-04-2013 09:21 AM
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