RERA's

[bookworm]

Hi All,

I've been on a CPAP for a while now. I think officially more than 6 months without a break. Tried the mouth appliance before that. I have severe RERA's. No OSA, No CSA only 7 hypopneas but had the "Severe RERA's" per the records. My 2nd sleep study with the CPAP machine my AHI was lower but my RERA index was still 22.6.

Isn't this still bad? I still feel so exhausted. If I don't take medication, I can't stay awake more than 3-4 hours at a time. I'm cold all the time, out of breath, and my body temperature is about 2 degrees lower than it normally is and last time I was at the doctor she asked me if anyone has ever told me my blood pressure is low. I have digestion issues and I know it's because of this. My report says I have obstructive sleep apnea for insurance purposes but he says more indicative of UARS. Anyone had surgery for this? What worked? Was it worth it? Is surgery a last resort? Is it hard to get approved? I want to start working out and living life again but worried about the lack of oxygen I'm getting and the toll it's taking on my body. My heart rate gets and stays over 200 if I even walk 3.5 mph on a treadmill and I'm a thin person in my early 30's.

Thanks!

[NotSleepingBeauty]

Wow, that is a lot of RERAs. I can imagine how awful you must feel. I also have an issue with them, but I only have a few. My highest was about 6 or 7 per hour.

I hope you get some good help here. I also have a topic below called "I think I know what my problem is". You can see what people told me regarding my very small RERAs.

[bookworm]

Yeah, I just pulled out my report and it said without my cpap, I had 35 hypopneas index 7.6, 184 rera's index 39.9. With a cpap I had 1 hypopnea .2 index and 115 rera's 22.6 index. I got 6 hrs 11 mins on first study and 6 hrs 3 mins on 2nd study of sleep.

[avi123]

I would try to be checked by a neurologist.

I also have Flow Limitation (=RERA=UAR) which rise above the mid point in my ResScan graphs. My APAP reacts to it by raising the pressure quite a bit. However, I would not be a candidate for dental approaches b/c of my OSA.

As for oral appliances see this that it could be helpful only for mild disordered breathing cases:

[bookworm]

I am a little confused by the chart.

I will say that I do have Chiari 1 Malformation. I'm trying to avoid decompression surgery which from my understanding does alleviate most sleep disorder issues. But rather than having someone hack into my head, if I could have surgery to fix the sleep apnea issue itself, I think I could manage the other symptoms of Chiari.

[Pugsy]

f I could have surgery to fix the sleep apnea issue

UARS is a new and not well known diagnosis and from what I have read it can sure be difficult to treat.
The typical surgeries promoted to "cure" OSA are at best maybe 50% effective from what little I have read and those people had the typical large amount of obstruction from floppy airway tissues. UARS is a much more less definitive collapse of the airway issue from what I have read. While cpap seems to be the gold standard for treatment it seems to be more difficult to achieve success.

There are a few members here with the UARS diagnosis and I am sure they will chime in later.

I have not heard of any UARS people having the OSA airway surgeries. Did you have one of the specific surgeries for OSA in mind? Mandibular advancement? The UPPP thing?

[bookworm]

Pugsy,

No, I guess I'm just researching options. The TAP and CPAP still leave me exhausted and I think it's effecting my health overall obviously. What other options are there? I guess that's what I'm trying to find. Or if there even are.

Thanks for replying....

Any input is appreciated.

[fiberfan]

My 2nd sleep study with the CPAP machine my AHI was lower but my RERA index was still 22.6.

Isn't this still bad?

That sounds bad to me. What cpap machine are you using? Some of the machines provide information that can be helpful in getting pressure settings that reduce RERAs. I don't remember what my RDI was but it was enough my sleep doc recommended cpap. I use the flow limitation data from the S9 when adjusting pressures (my sleep doc is fine with me changing pressures and provided a range to work within at first).

[Kairosgrammy]

Nothing constructive to say except it must be frustrating not to be able to find solutions. Hope something breaks soon for you. People don't understand our tired. You say you are tired and they say, yeah I am too. They just don't know how exhausted you can be from not sleeping right sometimes for years and you can't really explain it to them either.

Hi All,

I've been on a CPAP for a while now. I think officially more than 6 months without a break. Tried the mouth appliance before that. I have severe RERA's. No OSA, No CSA only 7 hypopneas but had the "Severe RERA's" per the records. My 2nd sleep study with the CPAP machine my AHI was lower but my RERA index was still 22.6.

Isn't this still bad? I still feel so exhausted. If I don't take medication, I can't stay awake more than 3-4 hours at a time. I'm cold all the time, out of breath, and my body temperature is about 2 degrees lower than it normally is and last time I was at the doctor she asked me if anyone has ever told me my blood pressure is low. I have digestion issues and I know it's because of this. My report says I have obstructive sleep apnea for insurance purposes but he says more indicative of UARS. Anyone had surgery for this? What worked? Was it worth it? Is surgery a last resort? Is it hard to get approved? I want to start working out and living life again but worried about the lack of oxygen I'm getting and the toll it's taking on my body. My heart rate gets and stays over 200 if I even walk 3.5 mph on a treadmill and I'm a thin person in my early 30's.

Thanks!

[bookworm]

I use: PR System One REMstar Plus C-Flex, Heated Humidfier, SD Card

http://www.cpap-supply.com/REMstar-Plus ... s250hs.htm

And you're right....it is frustrating. Because they see me as you know still young, thin, don't look like there is anything wrong with me. Just some hypochondriac. Everytime I even start to mention to a doctor that I have a hard time breathing or that my face and lips and arms are numb and tingling before I can even finish they start throwing out depression and anxiety. Same thing about my body temp dropping or low blood pressure. Must be in my head. Like F*** dude listen, most of America is having a hard time..I see it daily and because I see it daily, I'm reminded daily that I HAVE A PRETTY GOOD LIFE...no reason to be depressed or anxious. NONE. It's not that. Geesh. I just need air d**nit!

Sorry just needed to rant for a minute.

[cflame1]

you do know that your machine won't give you any data don't you?

A PLUS machine doesn't provide AHI or Leak data... which could indicate whether there's a problem.

[bookworm]

Yes, I knew it didn't give me any data other than average hours of sleep because I never see any data. They said it was similar to what I was given during the sleep study and was a good machine. I assumed the sleep clinic knew what they were doing when they gave it to me. At my follow up visits, they make me bring my chip in and the look at the chip to verify compliance and all that and said it was fine so I'm assuming they checked my levels because one time they upped my pressure and then after that said the pressure I was at was good. I've had to bring the chip in each time.