Free CPAP Advice and Sleep Apnea Treatment Help Board • View topic - Still Struggling
FAQ
It is currently Fri Nov 15, 2019 3:05 am

As an Amazon Associate, I earn from qualifying purchases.
Please consider a small PayPal donation to FreeCPAPAdvice.com above.Thank you so much for your support!



Author Message
bednbones
Unread post  Post subject: Still Struggling  |  Posted: Sun Sep 29, 2019 1:51 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
First, I want to thank people here that have answered my questions in the past and given me lots of wisdom.

Now - I don't want to be debbie downer because CPAP has helped me and I just want to get it together. So with that said,

I have switched my masks from nasal to FF back to nasal now. I have used heated humidifier various settings up and down, no heat and no humidifier at all. I have changed my settings from the initial prescription starting at 4 to now 8. Max went to 20 and now I'm down to 10. I leave the settings for a week or 2 before making any changes to be sure I am not changing too quickly.

Issues: I have had horrible headaches for 6 weeks now. NOTHING will get rid of them that is OTC. So I have been in a short tempered state and have to work really hard to smile. I think its the pressure from the CPAP as my nose is always blocked after a few hours on CPAP no matter all the prescription and OTC nasal, saline, flonase (allergic) etc that I have used. Even a nettie pot cannot get it unblocked after it is plugged. I sit up and watch TV or read and after 2 hours or so, I can breathe again and go back to bed. I feel pain and pressure in my neck (I thought from the FFM straps so I switched to nasal), in my shoulders, front of shoulder, and near my heart. I am extremely healthy (I think from previous check ups), NO cholesterol issues, no high BP, I exercise 3-4x a week, walk between 10-15K steps per day (job on ranch), I have changed my diet several times to see if that was it - no.

So I am resigned to seeing a doctor. I have an appointment w my PA next Tuesday. Wondering if I should cancel and see an ENT or go back to my sleep specialist (he doesn't seem as informed as some people on this sight - not to be mean). I pay out of pocket because my insurance doesn't kick in until after $5K deductible so I do not want to go to all 3. Just 1 really.

Any thoughts would be helpful.

_________________
Tami


Top
Pugsy
Unread post  Post subject: Re: Still Struggling  |  Posted: Sun Sep 29, 2019 3:11 pm
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1406
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
Are you using the heated hose with your machine?
What setting are you currently using right now in terms of humidity and heated hose (if you are using the heated hose)?

Do you have a headache when you go to bed?
If not and you wake up with one....how long does it take to go away?

What is your AHI doing since the reduction in max pressure to 10?
Have you looked to see if you ever hit 10 cm during the night?

When you wake up how long does it take the congestion to go away?


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Mon Sep 30, 2019 4:51 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
Hi Pugsy,

Yes, I do have the heated hose. Currently I am at 3 and heated. 2 weeks ago I was on no heat w just distilled water and then no water. It doesnt seem to make a difference. (heated hose has the special way it connects in and will allow me to heat - the other hose doesn't even give you the option on my machine.)

I have a headache most of the day with small periods when either I'm not thinking about it or maybe its not there. It feels like a sinus headache. It is always worse when I wake up plugged. I start with my CPAP, rip it off after a few hours of sleep because I can no longer breathe through my nose AT ALL or sometimes partially one nostril. It takes about 2 hours of sitting up for my nose to clear. I then restart my CPAP until it happens again. The next time I just usually leave it off.

My AHI (which I do pull off the SD and look at thru OSCAR) is between .05-with a high of 4.2 when I lowered it.

Before I lowered it, it was at 15 but my AHI's were up to a high of 9. The problem with the 15 was my FFM was leaking and I thought the headache was from the straps from another thread.

Yes, it will sometimes go to 10 but most nights stay at 9. 10 is where I find that the nasal pillow will stay on with partially plugged sinus' .

Someone told me to try a lower pressure to see if the headaches would disappear. I wanted to just give myself a few nights break from my CPAP but I can't because even with 2 hours here and there feels way better than no CPAP at all. I just can't do it. So my average sleep with CPAP per night is about 4 hours.

_________________
Tami


Top
Pugsy
Unread post  Post subject: Re: Still Struggling  |  Posted: Mon Sep 30, 2019 5:09 pm
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1406
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
When you use the heated hose the selection of 3 is for the humidity level...and that's 3 out of 8...so a relatively low humidity level setting.
The heated hose itself actually has a temperature choice in degrees or on automatic.

I don't know if the nasal congestion is from too much or not enough humidity or from something else going on at night with the nasal mucosa.

You have already tried no humidity or minimal....maybe try a lot more and see what happens?????

Headaches can of course be related to sinus issues but can also be related to other issues and since it is persistent....I have to say talk to your doctor about it. I would hate for you to blow it off and have it be related to something more serious.

Google "cpap rhinitis" as it is quite common and while some people do better with minimal added moisture it seems like most people need more.
I myself need as much as I can get or I get some horrible nasal/sinus congestion issues.

There is also something called vasomotor rhinitis where there's no known cause but since your congestion comes on in the night and abates after a couple of hours off cpap....sure makes one wonder if it is related to the humidity setting.
The pressures themselves don't normally cause headaches. People use over 20 cm pressure all the time without headaches.

Do you have a copy of the provider manual (it's different from the user manual) and it explains the humidifier options in more detail as to what your options are.
I think just setting both the humidity and hose air temp to automatic might be a good starting point.


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Mon Sep 30, 2019 5:22 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
Thanks Pugsy,. I will try your suggestions tonight. My appointment is tomorrow with my Physician Assistant.

I do not have a copy of the provider manual - I'll google and see if I can find something online. I set my CPAP to preheat ... it never feels cool or cold - but I will check for the auto.

Thank you again.

_________________
Tami


Top
Pugsy
Unread post  Post subject: Re: Still Struggling  |  Posted: Mon Sep 30, 2019 6:14 pm
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1406
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
You can go here and request a copy of the provider manual via email.

https://www.apneaboard.com/adjust-cpap- ... tup-manual

and I misspoke about the temperature choices for the hose.
ResMed does degrees....Respironics may do just numbers but there can be one number for the hose air temp and another number for the humidity setting...or I think their fully automatic might be called adaptive.
All explained in the manual.


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Mon Oct 07, 2019 8:33 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
Thank you. I have watched a bunch of YouTube videos and think I have a pretty good handle on my Dreamstation but I will definitely download the manual.

My Physician did not check anything on me as far as where I said the pressure is bugging me, heart, front of shoulders, neck, etc. She looked at nose and ears - no infection. She said I had problems w my jaw and thinks I'm clenching and decided I needed to see my dentist for a mouth guard. I had one before the CPAP and it screwed up my bottom teeth alignment. But, I went to the dentist because it was about time for a cleaning anyway. They fitted me for a new bite guard and I will pick it up tomorrow.

My physician also decided I should go back to see my Neuro Sleep Specialist and I have that appointment tomorrow. I am thinking that I will bring my CPAP with me so he can see how quickly my nose plugs up when I start my therapy. (since my regular doctor didnt seem to understand the issue of having your nose get plugged during therapy). I also will bring the SD card with my data and my laptop incase he doesnt have a way to download the data. I want him to see ALL of it.

I am reluctant to believe it is all tooth grinding because I wake up and my mouth is NOT clenched. I sleep with my mouth closed and my teeth aren't actually touching from what I can tell. Plus, my jaw is NEVER sore.Whatever.

I have not been able to use my CPAP for more than 2 hours the last week. I'm so annoyed with myself and my therapy but I refuse to give up.

_________________
Tami


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Tue Oct 08, 2019 4:36 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
So there is a sucker born every minute and now I think I'm the biggest one.

I'm probably $4K out of pocket at this point, I should be getting all the bills soon enough.

PA sent me to dentist. Had the routine stuff done and then a mouth guard mold. Next more molds because my bottom teeth are crooked (which they have always been a little crooked but became more crooked after wearing a mouth appliance for Sleep Apnea for a year). They are now to the point where my bite is off and I really can't tear a sandwich with my bite so I have something coming to straighten my bottom teeth. Over $3K. Plus, I had a panic attack during the molds and almost cried. Sheesh.

Then I went to the Pulmonary Specialist with my CPAP machine. I was told it is not from my CPAP machine, pressure, humification, or mask causing the headaches and pressure. It is all allergy related. I have NOT had allergies in 3 years but now whose to say they can't be back.

So, he has made me promise that I will do this regiment for 3 weeks and NOT give up. He also changed my dreamstation settings (I haven't checked what he has set it at but told me NOT to change that for 3 weeks either).

First, Saline nose spray 3-4 times during the day. Right before bed as well.

Wear a face mask while around animals or outside on the ranch.

Nasal Steriods, Allerflo from Costco. 2 sprays each nostril before sleep.
(I did tell him the horror story I had with Fluonase- he still recommended this).

Benadryl 25 mg at bed time as needed for severe sinus allergies.

Montelukast 10mg every evening. (this is a prescription drug).

He also changed my mask to F&P Eson Nasal Mask- Medium. I used it in his office for 3 minutes and I hate it already but will use it for 3 weeks.

So, if all these drugs don't Over Dose me ... I will let you know how it goes.

And, on Saturday, I have set up a lymphatic massage with a homeopath because that is more how I handle health issues.

I have no words .....

_________________
Tami


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Wed Oct 09, 2019 8:19 am
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
Ok, I lived even tho I put all those drugs in me. :lol:

I slept better than I have in over 2 months. I could not wear the F&P nasal because my new mouth guard kept my mouth a tiny bit open. I can only sleep with my mouth closed so I went back to my FFM - dreamwear. I went to sleep clear. Woke up an hour and 1/2 stuffy and could no longer breath. I did the saline nasal spray 2x in each nostril and also the Allerflo. Waited 15 minutes and put the mask back on. Slept thru the night!!!!

After 1 night - thumbs up. No pressure this am, no headache, and I feel refreshed like I got great sleep. AHI .5 --- my lowest EVER.

Hurray.

I'm going to call this am and see if I can return the teeth straightening trays and get at least part of my money back since it is a month before I get them!

_________________
Tami


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Sun Oct 27, 2019 9:29 pm
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
3 weeks after ... I can't say its perfect but its better. I could not stay on all the meds even tho I promised the pulmonary doctor. It just made me feel awful the next day. So now I am using essential oils to help with allergies during the day and I use the nettie pot at night. The nettie pot gives me an instant headache and feels like I am in a chorine pool (prob our water). Sometimes it takes a full 5 minutes before I can unclog one nostril. I also noticed that I cannot smell much. Is that a normal side effect of a nettie pot?

My AHI I thought was ok but then my SD card was full so I lost the last few days when I went to check on it. I am under 5 AHI so I'm not going to worry about it. I still feel the pressure in my chest, my headaches are better (maybe 2 a day).

Oh, and I started to have an alcoholic drink a few nights a week if I feel like I'm going to have trouble going to sleep. I'm not sure if that is a bad thing or not. I've never been much of a drinker but I have been falling asleep faster. Maybe I'll start a new threat about that to see what people say.

I'm going camping this week - do not have a way to power my CPAP so I probably wont bring it unless I find something this week or buy a generator. That should be interesting.

I feel conflicted as to whether I would ever recommend this path to help with sleep. I feel like cpap has taken over my evenings. I use to love my bed and going to bed. Now it feels like a job. Blehhhh.

_________________
Tami


Top
mumin50
Unread post  Post subject: Re: Still Struggling  |  Posted: Tue Oct 29, 2019 1:03 pm

Joined: Thu Jul 18, 2019 11:11 am
Posts: 10
PAP Mask: Resmed N30i
PAP Machine: Resmed A10 AutoSense
Humidifier: standard came with machine
Pressure Setting: 5-12

Offline
Be patient, im 4 mth in to it, it gets better and better. After some time it will be a rutine.
Also had lot of migrane headaches,was really bad, now only when i weak up with cloged sinus... once per month...
What water you use for your humidifier? i know that people will not agree with me on that but when i started using destiled water that helped me ... Also sometime i do not put water at all...
You need to try it out for yourselve, everybody is diferent...
Funny thing i used to sleep with mouth open now with nasal mask i sleep with mouth closed... My AHI from over 70 down to 0.2-2

Just wait litle longer Your throuth and sinuses need to rest from high AHI
i went down from 70 to 10 in a weak than to 5 in next weak, to below 2 in next 1 mth...
Alcochol is bad idea... for start ... after few drinks i get AHI 2.6... without 0.3, also being really tired also boosts my AHI, but not as much as alcochol. But remember if you drink a loth DO NOT forget to put on mask, as can end bad for you :cry:
What helps best is positive thinking, and sleep higene... :)
sorry for my English im from Poland :)


Top
cindyY
Unread post  Post subject: Re: Still Struggling  |  Posted: Thu Oct 31, 2019 7:52 pm

Joined: Sun Apr 23, 2017 8:34 pm
Posts: 447
Location: Southern California
PAP Mask: AirFit P10, Swift FX, Swift FX Nano, Eson2
PAP Machine: Resmed AirCurve 10 VAuto in S mode
Humidifier: Integrated set to 5 @ 81F; ClimateLineAir heated hose
Pressure Setting: IPAP 19 EPAP 15

Offline
bednbones,
I didn't notice in your opening post if you've tried sleeping on an incline to keep your sinuses from clogging. If this is not something you've tried, I recommend trying it. You did say that after sitting up for a couple of hours after you get clogged up helps, so it may help to keep them from becoming clogged to begin with. You can use pillows starting under your back and building up at whatever angle you feel comfortable with to start. You may find that you get some post-nasal drip down your throat and you need to cough it out, but hopefully your nasal passages stay open.


Top
Catwoman
Unread post  Post subject: Re: Still Struggling  |  Posted: Thu Oct 31, 2019 10:46 pm

Joined: Mon Aug 05, 2019 10:55 pm
Posts: 12
Location: Arizona
PAP Mask: Airfit f20 and airtouch f20
PAP Machine: Airsense for her
Pressure Setting: 8 cm

Offline
A bit late to the game but ...

I find that using a antibacterial filter on the cpap hose help with allergies a lot. Not the filter on the unit but the ones that plug in-between the hose and the mask or unit.


Top
bednbones
Unread post  Post subject: Re: Still Struggling  |  Posted: Fri Nov 08, 2019 9:31 am
User avatar

Joined: Sat Jun 22, 2019 6:54 pm
Posts: 16
Location: San Juan Capistrano, CA
PAP Mask: Dreamwear full mask or nasal pillow
PAP Machine: Philips Respironics Dreamstation
Humidifier: dreamstation humidifier
Pressure Setting: 8-10

Offline
Thank you for all the replies. After 5 months and trying every setting, humidification, non, distilled water, filtered water, heat, no heat, meds for allergies (which I haven't had for over 5 years), nettie pot, nasal sprays, etc. I have tapped out.

I had severe apnea according to my doctor but besides being tired, I was in great health. After 5 months on CPAP, i have severe headaches EVERY day ALL day, pressure in my chest, clogged sinuses all the time, nose bleeds, ear bleed, and the newest was problems with my gut health which I have never had and more meds were given to me to help that and I had to say NO.

I stopped using my CPAP last week. My headaches are almost gone, the pressure is gone, my nose is clear with no allergies or medication needed and I feel happy at work and home again.

I believe my ranch air quality of animals, plants, etc being forced into me was making me sick, very sick. If I ever go stay in a hotel or another area, I will bring my cpap and use it. We plan on selling the ranch in the next year or 2 and I will try again later. It just didn't work for me. I was getting sick rather than feeling better.

Very sad. But I love this community and thank you for all the responses and help.

_________________
Tami


Top
Display posts from previous:  Sort by  
Print view

Who is online
Users browsing this forum: No registered users and 11 guests
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum
Jump to:  


Delete all board cookies | The team | All times are UTC - 8 hours [ DST ]

Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group
DAJ Glass 2 template created by Dustin Baccetti
id="Mask Bright" style="width:728px;margin:auto;float:center";z-index:8">