Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

CPAP journey start - please help (thread)
#41
RE: CPAP journey start - please help (thread)
So an update.

It became clear also with the help of an ENT that I have a raging rhinitis. Everything is inflamed and turbinates are swollen.

The cause is unknown, however sleep disordered-breathing as I learn from Barry Krakow, is also a contributing factor.

So either allergic source, or non-allergic, or both.

On the allergic side, it could be dust mites. No other possible source for my case.

On the non-allergic side, clearly minoxidil which I take for hair loss has shown to be a greatly worsening factor. I have discontinued this immediately. I have taken it just one more time to confirm and can confirm indeed it reversed some progress. So now I will just discontinue this forever. Additionally, sleep disordered breathing itself can be a non-allergic cause as well as silent reflux.

This could partially explain why I had such a poor response as my nose breathing pretty much was non-existent at night. All the PAP air (which is shown by Barry Krakow to be inflammatory in itself for an inflamed nose) had to go through big turbinates. So I believe that's a structural flow limitation

I am currently sleeping without PAP but with a MAD at low setting of 3. My nose is doing better, and was doing great until I did that one experiment with minoxidil which reversed progress today, but at least now I know that it is a direct cause. I will raise MAD to 4 tonight and continue until my nose looks a lot better, hopefully no more than a few days / maybe a few weeks.

I am now working through this and once I notice that I wake up with a clear nose I will begin PAP therapy again. Will start over from EPAP of 6 and PS of 4 and take it from there, assuming if anything needs changing in that formula it is EPAP to be raised while PS is most likely fine. I am still a non-believer of auto-adjusting EPAP in UARS application so fixed EPAP, whereas with PS might allow some variability.
Post Reply Post Reply
#42
RE: CPAP journey start - please help (thread)
@Sleeprider can I pick your brain for a second? 

I am having the very first partial successes here by taking care of my nose. I wake up always now with at least one nostril functioning. It is still clear I breathe with my mouth as well while sleeping but nonetheless I am happy to take this partial success by focusing on the nose / rhinitis problem. I went from not being able to work and pondering moving to my parents for rest to actually being able to struggle through my everyday life. Without CPAP. A significant improvement for me. Hopefully the nose keeps opening up in the next few weeks as I continue rhinitis treatment. My hope is that then a vAuto that I am in the process to set up will be able to finish the job. 

My question to you is if you have ever seen in your years on this forum such sinusitis / rhinitis problems. It has become clear my headaches were sinusitis headaches. Also probably why CPAP made me feel bad, as Barry Krakow says it can inflame the nose further if it is already inflamed. Just want to know if you have any forum experience on this?
Post Reply Post Reply
#43
RE: CPAP journey start - please help (thread)
Hi there! How has your journey been progressing? What have you used to http with the nose situation?
Post Reply Post Reply
#44
RE: CPAP journey start - please help (thread)
(10-28-2023, 01:15 AM)lexit957 Wrote: Hi there! How has your journey been progressing? What have you used to http with the nose situation?

Hi lexit!! Thanks for hanging around here

Not much has happened

My nose is doing better than it used to be but it's still not in great shape. I am going to an ENT tomorrow about that, really trying to get my nose into 100% shape. What I used so far is azelastine spray and allegra sprays.  

Have not used CPAP during this time because it caused problems. Sinusitis headaches when I breathed through my nose, aerophagia when I breathed through my mouth, and no resolution of symptoms.

I am looking to try again soon. The nose is not as horrible as before. I think it should be sufficiently decent now for things to work better.

I find this complicated because of course there have been nose issues, possibly caused by reflux issues and the such, which are probably casued by garbage sleep for years anyways, but have to solve them to solve the sleep apparently....so I find this a complicated chain to break. 

I am going to try again and the plan there is to use a fixed EPAP (or a minor range of auto EPAP, that's also fine) + the highest fixed PS that I can tolerate without causing centrals (so probably PS of 4) and variable PS on top of it just because it is there so why not.
Post Reply Post Reply
#45
RE: CPAP journey start - please help (thread)
Hey all, how you are all doing? 

I have some updates to share

Let me first say that this thread will see completion. No matter how long it takes I will not leave this unfinished. Well first of all because I am going to keep looking for a solution - I literally cannot live like this, it feels like extreme sleep deprivation, like a constant fever etc. So I will investigate this until it's solved because it's the only possible thing to do. 

Secondly. I have been on a journey the last four months. A journey of learning I would say. I can say I am pretty proficient in analyzing my flow rate. 

I have done all sort of experiments. Low pressures, high pressures, low PS, high PS, constant PS, variable PS, timed breaths and not, and I have looked at the effects. Consumed all sorts of content. Barry Krakow ad his books, Jason from AXG diagnostics in particular

I have been looking with a friend at my flow rate. He insisted I raised PS and see what happens. I put PS constant to 4. What happened was catastrophic, a whole night of centrals. More centrals than normal breathing. Look at this: https://imgur.com/a/MygO7RW
This is a whole hour of centrals! But to be honest the whole section prior is also central-style induced breathing, regardless of whether it meets the definition of central apnea. I have learned through my own journey that this under-shadow is central-style, so don't really care much if it meets a definition or not. Good flow rate is "compressed", it doesn't extend deep into exhalation like that, even when the machine isn't flagging that.

So this friend introduced me to the idea of EERS, to add C02 to my mask to avoid centrals.

But I wasn't convinced. I had a few experiences. First of all, everytime I have these problems at high PS / high pressures, I have noticed my mouth is open. You can see the horrid leak rate, that is all mouth leak (with tape!). I thought that was interesting. I think my body is protesting against the pressure, it wants to get rid of air. 

But there is something else I have learned from that page on EERS. To recognize patterns such as waxing and waning etcetera. 

I went back through all my charts. From the beginning and all of my experiment. And I realised IT IS FULL OF THAT.

We have started this journey at pressure 7/4. That didn't work. It looked decent but I wasn't feeling any better. 

And then it hit me. What if...after 7/4 failed, I just kind of assumed it must have been because it wasn't enough. Not enough PS, not enough pressure, whatever. 

WHAT IF EPR 3 was too much and I actually never needed it. 

So tonight I did a new experiment. What happens at pressures 7/6? 

Look at this (attached)! IT IS SO MUCH BETTER. Leak rate resolved too! 

This is a new hope, a new chapter. Funny enough this is pretty similar flow rate to how it started, the difference is this time I have the knowledge to fix it.

I still have problems to be clear. You can see in the attachment that I woke up at like 5. Yep. To be clear I had no insomnia prior to CPAP. So I have to sort out what is happening here. Still some waxing and waning as well, as well as flow limits (regardless of whether the machine flags them or not, I don't care anymore).

The remaining insomnia problem is the only problem left and it happens late in the night in REM. Imho I might have wildly different needs between REM and non-REM. possibly I don't even need CPAP during non-REM, so then it becomes a balance of a pressure that works for REM without causing the waxing and waning, the mouth breathing, the central flow limits during non-REM. 

Most other problems e.g. leaks, nose breathing, nightmares, aerophagia, etc. all solved.

Next experiment is pressures 7.5/7. If still waxing and waning, will move to no PS. This seems like a job that pressure alone can do, maybe a little higher like 9 or so. Just need a little airway stability during REM.

I am coming back soon.


Attached Files Thumbnail(s)
   
Post Reply Post Reply
#46
RE: CPAP journey start - please help (thread)
Hi everyone, as promised I am giving a new update. THIS THREAD WILL BE SOLVED, even if I am just talking to myself. My experience must be something useful for future users that got the same.

Lots of things have happened since last update.

First of all, it is UARS. I hope nobody doubted that in this thread still but in case anyone was doubting still, I have UARS. Yes the stupid AHI report doesn't show it, and yes the stupid flow limits 95% blah blah didn't show it - I don't care.

In terms of what I am doing.

I have greatly improved my nose, I have no rhinitis anymore. However, that did not improve my symptoms. It is like I thought: my nose problems are a consequence and not a cause of sleep disordered breathing.

I am now using EERS. This is because clearly I was starting to experience problems before resolution of problems. For example, I raise pressures -> I get bloating and aerophagia, but I am still flow limited. I raise PS, and I get centrals, but I am still flow limited.

It seems like this is the core of the issue, this overlap area where the issue is not solved but problems and side effects already started. Fairly common issue I would say. So what really works here, is ways to overcome these overlap / side effects. If I could use any PS without care of centrals, I would have no problems; if I could use any pressure without eating air, I would be fine.

Looking back, I don't think this was that hard to figure out. I bet this overlap is fairly common thing. it was more the gaslighting that made this harder than it should've been.

I am using EERS, 6 inches. Pressure support of 5 seems to be the limit of what I can do even with EERS. If I try to use like PS of 6, I would have to use like 18 inches of EERS, and this is on top of the mask tube. So that started to feel a bit ridiculous, so I dialed back to stop at PS of 5, with 6 inches of EERS. So for example pressure of 10-5 now.

Non-REM sleep seems to be now solved. It looks good, there's large sections of my sleep that are very good. I feel decently better, confident enough to resume normal life. So that's very positive. However far from cured.

I would guesstimate I am like 60% of the way there, which is so much better than where I started this thread from (like 5%).

Now what remains problematic is REM sleep. I don't really know why and what's going on with that. Basically REM starts, mouth opens up, flow rate degrades etc. Then REM is over, and everything is fine again.

It's not clear if that is because of not enough pressure for example or if perhaps there is something more structural that happens when my jaw drops in REM, that CPAP cannot solve.

I am trying to raise EPAP currently (so going from 9-4 to 10-5, 11-6 etcetera). And see where that goes, if that fixes REM. Will raise until I get negative consequences like aerophagia again. And if that doesn't resolve things, well would have to figure that out.
Post Reply Post Reply
#47
RE: CPAP journey start - please help (thread)
To be able to use a high PS without having too much CA, did you try to use a resmed Aircurve 10 VAUTO with parameter trigger set to high/very high?
First Aircurve 10 Vauto I get didn't have trigger parameter available, and with PS upper to 5, I got lot of CA with IAH between 5 and 10.
I just got a new aircurve 10 Vauto with trigger parameter available few days ago, I put the trigger on high and increase PS of 0,2 every night from 5. My EPAP is on 9, I did PS of 5,2, then 5,4 and got an IAH lower than 1! Then I tried 5,6 and got some central with IAH of 2,3.
So I switched the trigger to very high still with PS of 5,6 (it was last night) and got an IAH of 0! First time with a non Resmed ASV device.
So I will continue to increase slowly the PS to see if it can kill most of the RERA I have during REM sleep and until “the limit” to see how much PS I can handle while keeping central apnea under control.
I also have UARS, I already tried high EPAP with PS of 4 or 5, it doesn't work very well and it is not comfortable to handle very high pressure (aerophagia, noise and leak). I tried also ASV and it doesn’t work very well as quick increase of PS generate CA that is automatically treated by maintaining me on non-spontaneous respiratory for some times so this approach seems counterproductive to me…
So I hope that the Aircurve 10 Vauto with trigger parameter set to very high will bring me to the “next level” of therapy!
Post Reply Post Reply
#48
RE: CPAP journey start - please help (thread)
(01-26-2024, 09:09 AM)zaienk Wrote: To be able to use a high PS without having too much CA, did you try to use a resmed Aircurve 10 VAUTO with parameter trigger set to high/very high?
First Aircurve 10 Vauto I get didn't have trigger parameter available, and with PS upper to 5, I got lot of CA with IAH between 5 and 10.
I just got  a new aircurve 10 Vauto with trigger parameter available few days ago, I put the trigger on high and increase PS of 0,2 every night from 5. My EPAP is on 9, I did PS of 5,2, then 5,4 and got an IAH lower than 1! Then I tried 5,6 and got some central with IAH of 2,3.
So I switched the trigger to very high still with PS of 5,6 (it was last night) and got an IAH of 0!  First time with a non Resmed ASV device.
So I will continue to increase slowly the PS to see if it can kill most of the RERA I have during REM sleep and until “the limit” to see how much PS I can handle while keeping central apnea under control.
I also have UARS, I already tried high EPAP with PS of 4 or 5, it doesn't work very well and it is not comfortable to handle very high pressure (aerophagia, noise and leak). I tried also ASV and it doesn’t work very well as quick increase of PS generate CA that is automatically treated by maintaining me on non-spontaneous respiratory for some times so this approach seems counterproductive to me…
So I hope that the Aircurve 10 Vauto with trigger parameter set to very high will bring me to the “next level” of therapy!

Hi, thanks for this. Your illness seems quite similar to mine. 

Yes I also tried raising EPAP, I did 11-6 last night and honestly it was much worse than 9-4. 

It really seems like it's just PS that works here. EPAP does nothing for me.

I will definitely try the Resmed vAuto with high triggers, although I don't have too much high hopes for that (would be too good to be true), but I will try.

The way I understand the whole issue is that my PS currently is not enough and too much at the same time. Not enough for REM, and too much for non-REM. Hence this conundrum me and you are both in. Only things that actually work are ways to increase PS without causing centrals.

I would definitely recommend you try the EERS by the way, it definitely raised the max. PS I can tolerate by like 1 or 2 points. Only problem is that it's loud as hell.
Post Reply Post Reply
#49
RE: CPAP journey start - please help (thread)
You're welcome!

I already tried much more higher EPAP, like 19/14!

It seems to me that the benefit of high IPAP with "standard range of PS" is canceled by the higher effort to do to exhale with high EPAP.

I didn't have that much hope like you regarding the trigger value and it was complicate for me to find a abordable machine regarding cost from france with this parameter available, but it is an incredible surprise for me as it is a game changer! I always mostly  had CA with IAH between 0 and 2 with PS from 4 to 5. Upper to 5, I got much more central apnea, and was not able to increase over 5,4 without getting cluster of CA.

Now, with trigger on very high, I have frequently on IAH of 0. Last two nights, I got on IAH of 0 with a PS of 6!  It is a bit early to take conclusion but I wake up less during REM period, feel more refresh and it seems that my tidal volume line start to getting much more flat in some period!

I didn't expect that much result as I tried classic CPAP, the AIRCURVE 10 VAUTO without this parameter, the AIRCURVE 10 ASV, well so much tried for not so good result and now it seems that "I'm starting to see the end of the tunnel"!
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  WW4B Therapy thread WW4B 49 4,060 Yesterday, 04:31 PM
Last Post: WW4B
  IanD - Therapy Thread IanD 28 2,262 03-26-2024, 08:18 PM
Last Post: IanD
  MrIvanDrago - CPAP|Bi-PAP Therapy Journey MrIvanDrago 67 3,337 03-26-2024, 01:22 PM
Last Post: MrIvanDrago
  Marcin's Therapy Thread marcinpiskala 20 957 03-23-2024, 04:38 PM
Last Post: Sleeprider
Information Alaxo Hybrid Stent with CPAP - Therapy Thread G. Szabo 29 1,200 03-22-2024, 10:51 PM
Last Post: G. Szabo
  Jan's - Therapy Thread Jan Flikweert 71 2,577 03-21-2024, 11:01 PM
Last Post: Jan Flikweert
  brainfoggysleeper's Therapy Thread brainfoggysleeper 23 532 03-21-2024, 08:38 PM
Last Post: Crimson Nape


New Posts   Today's Posts


About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.