help with feeling better UARS

[Hgabs]

Hello All

I am new to cpap and everything and I don't have a problem with getting used to the cpap at all but for some reason after a minor laser nose surgery in January my symptoms are back (could be just a coincidence) I am suspecting that either I need more air pressure to feel better (for some odd reason) or that when I got off my GERD medications it got worse (even though I'm back on and it doesn't seem to be getting better. I turned off the flex cause I couldn't stand not feeling any air coming out on exhale. its only been two days so not sure yet (felt great first night and horrible the second night. I posted last nights results. Know my ahi is low but cause I have UARS this is not an indication since I feel like crap?

Any advice would be so helpful...


I paste my old post below with some history .













Hello All


After years of TMJ and morning migraines (sine 2008) I was finally diagnosed with UARS in 2018. I did a few soft palate and easy procedures with radiotherapy and laser (first was using nasal dilator and a MAD device. Anyways in 2019 September tried a cpap for the first time (dream station) and it changed my life. For the first time ever I barely had any migraines or fast heartbeat and so on. IT was like a miracle. Anyways now all of a sudden since January the symptoms are back and I even downloaded Oscar to start checking my data (I am clueless as to what I am reading) but I am desperate to find out why the symptoms are suddenly back. The only think I did different was I got off my Nexium in November so my doctor suggested I try a mild dose again (I have been starting). I was first using the DreamWear nasal cushion and it was great. Then after I came back from my laser surgery in January the symptoms have been returning. I tried to switch to the full face mask for a few days (I felt worse). Then now I switched to the Philips nasal pillows (they feel better) but my symptoms of exhaustion and moodiness and rapid heart rate are all back. I even tried Benzos one or two times to calm myself down from the anxiety of this coming back! Any advice you can provide would be really appreciated it! (note I also have a heated hose as well but the air still feels a bit cold). I wonder if my LPR (have nighttime reflux) is contributing or is it my opening of mouth at night (my husband said a few times my mouth was open (but there is no leak rate on the machine) I even suspected it could be my nose and allergies but I'm on immunotherapy and take Claritin and am wearing a nasal dilator with my nasal pillow mask. Please note also I am not over weight I weight around 56 kg. I am also happy to post some data but wouldn't know what to post. Thank you so much!

[Pugsy]

We don't need the respiration rate graph but do need the Events graph.

How's your sleep quality? Are you waking often during the night?

Medications...????

Have you tried just increasing your minimum pressure at all to see if it helps in how you feel?

[Hgabs]

Hi Pugsy

I'm sorry it's the wrong graph - sorry I am a newbie. Is this correct? I wake up two or three times with my heart racing and then I go back to sleep. I take magnesium and I am back on Nexium even though im debating getting off of it gain. Once in a while if my jaw gets stuck from all the night time clenching I'll take a diazepam had to take one a few days ago when that happened. I haven't tried increasing the pressure, it used to be at 5 and then the doctor increased it to 7. should I increase it just by one? I also changed the humidification to fixed at high because of the stuffy nose as well. The TMJ and migraines are horrible too

[Pugsy]

Sorry....still the wrong graph.
When you have time review this thread for examples.
viewtopic/t158560/How-to-post-images-for-review.html

Typically UARS patients often need more pressure beyond what gives nice clear low AHI numbers because the machine simply doesn't really tell us what might be going on with UARS. You have to go more on how you feel than the graphs and numbers.

So yes, I would increase the pressure and see if that helps or not. You need to give each change at least a week and make meticulous notes about how you feel and sleep. Keep a very detailed diary. The software data isn't going to help much. You have to rely more on subjective symptoms than numbers or pretty graphs.

[Hgabs]

Hi Pugsy


Thanks for your reply and is it ok that I turned the flex off- it feels better when I know I can exhale it gives me a comforting feeling that the air is flowing. I posted the correct one (at least I think it is! haha)

Thanks so much!

[Pugsy]

You got it.

Using Flex exhale relief is just a matter of personal choice. It's there for your comfort if you want it or like it.
If you prefer not having it available that's fine too.

[Hgabs]

Thank you so much you are the best! Im going to increase the pressure then report back if I have questions!

[Hgabs]

Hi Pugsy and the rest....


I am not sure if you will see this post or if im supposed to post a new one but I have completed one week one week on a pressure of 7 instead of 6 with no c flex. I still don’t feel better. Humidification has been fixed at 5 but I still have a stuffy and dry and sticky nose… I pasted my detailed notes before and am posting the day charts (well it only allows three I can rely with the rest if you want to see them) I am assuming I should increase it to 8 tonight? also should I be bringing the maximum pressure down one or leave that alone?

12th AHI 1.35 woke up at 7 am not sure if its related to hyopnea and OA but there was both right before and a hypopnea right before. have more energy but my jaw hurts from clenching all night. I do that supposedly when I cant breathe (keep in mind I have had epr off )
13th. AHI 2.54. didnt wake up all night for first time as well.... fell really tired though like bus hit me... feel tired during day more i ate the more i gained energy and felt better then i was perfect
14th. AHI 1.46. woke up at 3:34 but machine didnt recordd anytihng... looks like an apnea event... felt cranky and tired though
15th. 1.80. felt horrible in morning but then was fine and had energy throughout the day ... this if the first night that I tape my mouth
16th. AHI 2.17. have felt horrible the entire day... absolutely horrible jaw cracking from day to night and fel stuffy and i cant breathe. tapes my mouth....
17th. AHI 2.5. didnt tape mouth but woke up with headchae and jaw ache.....
18th. AHI 2.44. felt horrible today jaw was clicking all day and lots of tmj pain....
will put epr back on at 3 to test it out.... Heard this is better for UARS patients…. In terms of comfort it didn’t make a difference to me… and will wear mouth tape..... I decided also to not wear the guard tonight I feel its making me clench more- wore guard last few nights….

19th Today woke up feeling better less of a headache …. Was awake thought from 6 am onwards so I know the last hour in bed I was awake.. I have more energy and the headache is nothing compared to the other days.. Wondering if it’s the mouth tape and turning on the c flex or what??

I keep pressing the power button the machine when I wake up so that the next day can see what happened sometimes its an OA and then followed few minutes later with a hypopnea (like last night).Sometimes FL Sometimes the lines don’t look like normal breathing but I will wake up (I attached an example of stuff the machine isn’t recording)


Thank you for your incredible support!!

[Miss Emerita]

The experts can advise you about your settings, but one thing I notice is that you don't seem to be sleeping for as long as 8 hours per night. You also go to bed at quite different times different nights.

It'd be worth trying to go to bed at the same time every night (=/- 20 min), getting up at the same time, and timing things so you get at least 8 hours. If you could give this a trial for, say, 2 weeks, I'd be curious whether you saw a difference in your daytime experience.

[zonker]

Hi Pugsy and the rest....


I am not sure if you will see this post or if im supposed to post a new one but I have completed one week one week on a pressure of 7 instead of 6 with no c flex.

don't have the answer. just wanted to assure you (and other newbies reading this) that you have done exactly right in posting this in your existing thread. it makes it much easier for the experts to track you.

i'll now sit back down and let the experts speak....

[nee]

Could you post a picture of your night guard?

I have patient who have sleeping problems, and their previous dentist had made them a night guard that covers the entire palate.

I'm just like... really? A night guard that covers where the tongue is supposed to rest at night?

[Hgabs]

Hi


Miss Emerita I usually got to bed around the same time that first night I fell asleep without the mask for two hours hehehe, I will try to be more strict about it though.

Nee I posted a picture- its the fact that my teeth feel so much closer together even though its so thin

Thanks zonker... will wait for help

[Hgabs]

Hi Nee


Here is a picture of my guard! I think it should be fine right? Maybe I am being extra sensitive to when I am clenching.

[Hgabs]

So I am on my third day with the pressure bumped up to 8. While I felt horrible on 7 so far my headaches have gone down tremendously on 8. However I am wondering why my maximum is going up more and maybe it seems my minimum has increased bit. Also what is variable breathing? I have a ton of it in this new Oscar program.

So I am assuming bump it up next week but do I keep the maximum where it is for now?

[Jas_williams]

I see no need to raise your minimum any more. Those spikes like mountain peaks you see are good on a Philips machine if your breathing really boring and nothing going on a Philips machine will regularly try increasing the pressure by 1.5 cm to see if your breathing is any better finds it isn’t and lowers the pressure again.The time when your machine went to its max pressure maybe your rolled over onto your back or something. That normally indicate you need to raise your max pressure a bit


As you are a UARS sufferer you mainly need to go on how you feel