3 years of CPAP

LaurieJ31981 · Post by **LaurieJ31981** » Mon May 07, 2012 2:29 pm

Been a VERY long time since I have posted on here...

has anyone that's been on CPAP for several years, end up having to go for a 24 hour sleep study?

Over the past year I have been extremely tired again, did a 3 week trial on a Bi pap machine, which seemed to be fine but still exhausted. All my numbers are good, blood tests have been fine... this is the last resort, so thats where I am headed tonight... I guess I have to do the normal sleep study and then tomorrow i'll have to take naps every 2 hours, i mean i get tired but being there hooked up to wires I highly doubt i'll be able to nap so I'm not sure what all this is going to accomplish but i hope it helps...

Just wanted to see if this has happened to anyone else before, and if the 24 hour sleep study made a difference.

Mary Z · Post by **Mary Z** » Mon May 07, 2012 4:02 pm

Well it wasn't exactly 24 hours, but the night sleep study followed by the MSLT. I was able to sleep during every nap and could barely stay awake in between. I found out I had hypersomnia (sleep too much), not narcolepsy. Don't worry, it should be diagnostic no matter what. The solution for me- Provigil/Nuvigil.
Good Luck. Take some snacks and something to read. My lab didn't provide breakfast and I didn't get a chance to leave in between. I had the test at about the three month mark.

jen4700 · Post by **jen4700** » Mon May 07, 2012 4:27 pm

Good luck - keep us posted!

jweeks · Post by **jweeks** » Mon May 07, 2012 10:55 pm

LaurieJ31981 wrote:Over the past year I have been extremely tired again, did a 3 week trial on a Bi pap machine, which seemed to be fine but still exhausted. All my numbers are good, blood tests have been fine... this is the last resort, so thats where I am headed tonight...

Laurie,

Please post back about your experience, and what, if anything, they find. I was in a groove for getting excellent sleep for about 3 years on BiPAP, but this past year has been a struggle. The numbers on my machine look great, but I don't feel great. I went in for a new overnight study, and they found an issue with RERA breathing, which wasn't the issue when I first started--I was initially diagnosed with OSA.

-john-

DavidCarolina · Post by **DavidCarolina** » Mon May 07, 2012 11:23 pm

Im sorry y'all have been having good numbers but exhaustion. Until I had OSA diagnosed along with an immune disease i didnt have much compassion or knowledge of how debiltating it really is.

Im at pressure 13 so a bipap is possible in my future. Im trying to get to my correct weight before any major changes. Surgery is also an option.

Have you investigated the possibilty of another health problem such as intestinal permeability (leaky gut) causing an immune repsonse? That can make
you awfully sick even if your sleep numbers are good.

LaurieJ31981 · Post by **LaurieJ31981** » Sat May 12, 2012 11:43 am

Sorry it took so long for me to reply had a busy week...

so I slept fine at the overnight study, woke up at 635am, had 5 naps every 2 hours last one was at 435.. LONG day! Anyway, I was fine with keeping myself awake all day, but when it was nap time the tech would ask me on a scale of 1-6 how tired i felt, first time was about a 4... I did doze off.. 2nd nape i felt more awake so i said a 2.. again fell asleep... 3rd time, I was determined that it was a 1 and I was wide awake... nope fell asleep again, and the 4th and 5th time also... It wasn't for long but i felt myself start to dream, and then i'd wake up a few mins later she came in...

I am waiting for my Dr. to call me with the results, they said they got a lot of good data so i am hoping they can figure this all out...

Suzjohnson · Post by **Suzjohnson** » Sat May 12, 2012 11:48 am

LaurieJ31981 wrote:
I am waiting for my Dr. to call me with the results, they said they got a lot of good data so i am hoping they can figure this all out...

I hope so too LaurieJ. Will be waiting to hear.

Suz

JohnBFisher · Post by **JohnBFisher** » Sat May 12, 2012 11:50 am

Here's hoping they are able to figure this out for you and get you back to your normal self.

Keep us posted!

jwerley · Post by **jwerley** » Sat May 12, 2012 2:56 pm

Laurie .....I am 7 years on C-PAP, and I am having similar problems.....I go in for another sleep study Monday night. The daytime sleepiness has just been awful!!! I have never missed a night using my equipment, so I am very compliant. Along with the sleepiness I am having headaches and more than normal body aches (I have fibromyalgia)....Things have gotten so bad that I do not feel like doing anything, and I mean anything, everything I do is forced!! I do have to say that for me the Aloha Mask has helped somewhat, but not nearly enough.

I am new to this forum....did not know it even existed...so glad I have found all of you!! It has been a real eye opener for me, as I was just leaving everything in the hands of my doctors and the lovely DME's. That probably says it all right there!!! LOL

I will report back next week or whenever I get my results!

Janice

LaurieJ31981 · Post by **LaurieJ31981** » Sat May 12, 2012 3:20 pm

jwerley wrote:Laurie .....I am 7 years on C-PAP, and I am having similar problems.....I go in for another sleep study Monday night. The daytime sleepiness has just been awful!!! I have never missed a night using my equipment, so I am very compliant. Along with the sleepiness I am having headaches and more than normal body aches (I have fibromyalgia)....Things have gotten so bad that I do not feel like doing anything, and I mean anything, everything I do is forced!! I do have to say that for me the Aloha Mask has helped somewhat, but not nearly enough.

I am new to this forum....did not know it even existed...so glad I have found all of you!! It has been a real eye opener for me, as I was just leaving everything in the hands of my doctors and the lovely DME's. That probably says it all right there!!! LOL

I will report back next week or whenever I get my results!

Janice

I hope everything gets figured out for you Janice... You finally get used to feeling good after yrs of being exhausted and you're doing everything you always did and all of a sudden you start feeling bad again. It's a struggle for me to get out of bed now, once I started CPAP on the weekends id be up no later then 7am, prior to CPAP I could sleep till 12-1pm.. so it was a huge difference, now I am pushing 10am on the weekends, and 630am during the week is awful.. So exhausted all day..

I have had some blood work done everything has been normal... Could be another issue, hopefully I hear back soon.

Good luck at the sleep study

avi123 · Post by **avi123** » Sun May 13, 2012 11:06 am

I am wondering if Laurie and Janice should try to change their machines to a more advanced one such as the S9 Autoset, and use it in the APAP mode?

LaurieJ31981 · Post by **LaurieJ31981** » Sun May 13, 2012 4:45 pm

avi123 wrote:I am wondering if Laurie and Janice should try to change their machines to a more advanced one such as the S9 Autoset, and use it in the APAP mode?

My insurance wont cover a machine change yet, so unless my Dr pushes for that I have to stay with what I have for 2 more yrs, But we will see what she says.. Hopefully I hear back this week.

jwerley · Post by **jwerley** » Mon May 14, 2012 8:45 pm

Off to my sleep study in 5 minutes! I have medicare and am not due for a new machine until Dec. 2013
I am going to wait also to see how the study turns out and see what the doc says......before making a possible decision to go ahead and purchase a new one on my own.....will keep you posted....Good night.....

LaurieJ31981 · Post by **LaurieJ31981** » Mon Jun 04, 2012 4:43 pm

Sorry that I haven't updated still no word from my Dr, Not sure what the hold up is I am sure there was a alot of data from the 24 hour study but i'd still like to know... anyway, June 20th i have surgery to have my tonsils and adenoids removed, ears have been blocked for 8 weeks, nose stuffy... adenoids are very large and inflammed sooo here's hoping it makes me sleep a little better... and won't be so tired. Both have needed to come out for many yrs... i'll keep you all posted with both outcomes.

avi123 · Post by **avi123** » Mon Jun 04, 2012 5:30 pm

LaurieJ31981 wrote:Sorry that I haven't updated still no word from my Dr, Not sure what the hold up is I am sure there was a alot of data from the 24 hour study but i'd still like to know... anyway, June 20th i have surgery to have my tonsils and adenoids removed, ears have been blocked for 8 weeks, nose stuffy... adenoids are very large and inflammed sooo here's hoping it makes me sleep a little better... and won't be so tired. Both have needed to come out for many yrs... i'll keep you all posted with both outcomes.

Question,

Would you be able to use your CPAP on 12 CM immediately after the tonsils and adenoids surgery?

3 years of CPAP

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