Some progress - Dental Device

[jskinner]

I just wanted to give everyone a bit of an update on my situation. For those of you who are new to the group I will give a bit of background. Spent many years suffering from undiagnosed sleep apnea, had some type of event that affected my right side during the night in last June, finally got diagnosed with serve sleep apnea last summer, started on CPAP almost 1 year ago in July, started feeling much better, wrote Encore Pro Analyser, in November I started having nasal congestion problems, tried many things and saw many doctors, eventually was supposed to have surgery, had to stop CPAP as breathing got so bad, etc.

Additonal background info can be found at:
viewtopic.php?t=17141
viewtopic.php?t=17533

So I have been living without CPAP since April. Its not been fun. About a month ago I started sleeping with my torso elevated and that provided a bit of relief. Last week I got a dental device to see if that would help any. I had low expectations given the things I have read about the possibility it might help.

Fortunately I seem one of the ones that a dental device works somewhat. I have been using it for a week now and things are defiantly better. I could feel the difference from the first night, particularly in the reduction of headaches.

My nasal situation still is very problematic. Daytime congestion has improved some but still I often have one blocked nostril. At night things get worse when I lie down (does not matter where) I start having more difficulty breathing. Worse yet if I lie on my side that nostril blocks ups very quickly. This means I must try to sleep on my back all the time which is of course the worse position for apnea. Congestion also seems to get worse if I am just sitting quietly, being active seems to help it some.

Frustratingly now that things looks better during the day I can't seem to get any doctor interested. I feel like I can't catch my breath a lot of the time and nights are very trying as the congestion builds.

However I am thankful for the relief from the elevation and the dental device. I go back tomorrow for my first follow up and then will be able to start tightening it up more which I hope will give additional relief.

I have noted a few things this time around. Before CPAP I had lots of chest pressure in the mornings, that came back now that I have been off CPAP. It used to clear right up after a good night on CPAP but it doesn't seem to now.

I think the 6-8 months of suffocating and apnea has really done a number on my body. I feel quite worn out and ill a lot of the time. I really think if I could get this nasal problem fixed I could recover but no one seems to know whats wrong (or worse seem interested in trying to figure it out) Something is clear wrong with my mucus membrane. Its not clear to me if its just in my nose or more wide spread.

I'm very discouraged about the whole thing. I can't believe that its gone on for 6-8 months. Its clear to me that all the time has done some damage to my body. I see my sleep specialist on Friday so I hope he might take an interest.

In the mean time I need to buy an oximeter to be able to monitor exactly how well the dental device is working. I think i have it narrowed down to the Monolta 300 or Risperonics WristOx. Anyone have any experience with either of those? Anyone know the cheapest place on line where I might buy one?

[frete50]

James,

Hope your problems clear up and you can get back to feeling normal.

Also Not sure if this is the cheapest place but they have a wide selection: http://www.turnermedical.com/

Becky

[northernlights]

Hi:

Hello to a fellow Canuck! Sorry you're having such problems with your therapy. I've been on a machine for 14 months now, and it really has changed my life - more energy, more alert, weight loss, etc. I've been one of the fortunate ones, and have been 99.9% compliant.
I also have had long-term nasal congestion, and really have become reliant on nasal sprays to keep things open (in particular, Otrivin). The trouble with these things is the "rebound" reaction you get from them.
Here's the thing: about a week ago, I bought a bottle of saline nasal solution, and started using it about a half hour before putting my head on the pillow. Long story short, I haven't used any nasal spray in over a week
(other than Flonase for my allergies, in the morning) and am breathing fine at night with the mask on. This is the first time in maybe 40 years I've done this! I also think that the pressure from the machine also helps keep my nasal passages open during the night.
Anyways, it's a suggestion, may not work for you. Hope it does, because as people have said "This therapy works!"

Best of luck,

Steve.

[jskinner]

Here's the thing: about a week ago, I bought a bottle of saline nasal solution, and started using it about a half hour before putting my head on the pillow. Long story short, I haven't used any nasal spray in over a week
(other than Flonase for my allergies, in the morning) and am breathing fine at night with the mask on. This is the first time in maybe 40 years I've done this! I also think that the pressure from the machine also helps keep my nasal passages open during the night.
Anyways, it's a suggestion, may not work for you.

This nasal problem is not some type of allergy or dryness. I have tried all these the usual things. Saline sprays, steroids, prednisone, atrovent. I don't use decongestants due to the rebound that you pointed out but even decongestants don't work any on clearing it out. This is not a typical nasal problem.

[tangents]

Hi Jim,

I'm relatively new, but have followed some of your story since I joined the forum. I'm curious to know why you can't use CPAP with a full face mask or the Oracle mouth interface?

Take care, and I sure hope you get on the path to good health. I can tell that you're a gem by the response of the folks here to your posts.

Cathy

[jskinner]

I'm relatively new, but have followed some of your story since I joined the forum. I'm curious to know why you can't use CPAP with a full face mask or the Oracle mouth interface?

Hi Cathy,

One of the first things I tried when starting to have problem was switching to a full face mask. Eventually when things got really bad Dr. put me on the Oracle mouth interface. I used the Oracle for 2.5 months and it was the worst experience of my life. Besides the usual Oracle issues I seemed to get a flapping of the upper pallet. This flapping would causes blockages when I breathed out and the whole thing made me get very little sleep indeed. Also using the Oracle didn't allow the swelling/congestion to go down (which was the whole point) No one seemed to hear of this pallet flapping problem except for one guy at the DME who said he head one other patient that had the same issue. Bottom line I just couldn't control my apnea on the Oracle and I got very little sleep. In the end I wish I had stopped using it much sooner. It seemed like the problem in my nose/airway, what ever it is, got much worse after using the Oracle

[tangents]

Man, that stinks. Sorry you have such a tough time. Wish there was something I could do.

Take Care,
Cathy

[oceanpearl]

James
My pulmonory doctor told me that anytime I wanted to do an overnite oximeter test to just call his office and schedule picking up the oximeter.

[jskinner]

My pulmonory doctor told me that anytime I wanted to do an overnite oximeter test to just call his office and schedule picking up the oximeter.

They cost $75 a night from my DME once you have a prescription. It wouldn't take long to pay for one at those costs. I'd rather buy one and have it for long term use than spend that much per night.

[oceanpearl]

My pulmonory doctor told me that anytime I wanted to do an overnite oximeter test to just call his office and schedule picking up the oximeter.

They cost $75 a night from my DME once you have a prescription. It wouldn't take long to pay for one at those costs. I'd rather buy one and have it for long term use than spend that much per night.

[ablong]

James

I purchased a Nonin 2500a from Turner Med

It was not the cheapest way and I was looking at the long
term. I have some HP calculators from Eng school days they all still
work. So I hope the Pulsoix will hang out also.

HP-45 from 1973
Hp-11 from 1983
Hp-15 from 1987
HP 32si2 from 1999

The a has a alarm which is programable On Off Or A % OF o2

The 3100 is neat I used one a couple of nites loan from DME
It does not have a alarm like the 2500a. Both use about the same
Pickup either will serve you well Their just not the cheapest on the
market.

Turner was a pleasure to do business with but they sent it free UPS
to Texas and it took 7 days.

Lots of Luck.

Allen

[Slinky]

James, Nonin has come out w/a wrist pulse ox similar to the SPO 7500 that works well w/the ResMed ResLink. The Nonin sensor and the Nonin cable are the only ones Resmed is recommending. The Nonin wrist ox is not all the much more expensive than the SPO 7500.

And, speaking of the SPO 7500 - they have improved their sensor. It is now a rubber cup type of finger probe and just inserting your finger turns the wrist ox On and removing your finger from the probe turns it Off. No more fighting w/those darn hard to use On/Off buttons. You still have to use the Right button to go into Connection mode BUT you don't have to use it again to get into Recording mode. I LOVE it! Plus the software was updated somewhat supposedly. I haven't noticed a difference BUT there's reason to believe the software may be the ProFox under license name to SPO. Or the ProFox software is now compatible w/the SPO 7500.

Also, check your PMs. I have something I need to ask you.

By the way. I must have missed something. I take it somewhere along the way, you or "they" opted against surgery??? Weren't you scheduled for surgery sometime this month.

And doggone if I didn't just read not too long ago about a black mold fungus causing severe facial swelling (nasal and sinus) that took MONTHS to go down AFTER treatment AND removal from exposure to the mold. I intended to cut and paste the article when ZAP! we had a power outage and by the time power came back on I had no idea how to find it again. (Short term memory still "ain't" the best!)

[DivinMercy]

James-

As always no concrete help here, but know that you are (still) in my thoughts and prayers.

Hang in there.

God Bless...Mary

[Guest]

James,

Have you tried CPAP with a different full face mask other the oracle recently? Just grasping for straws, but what if you plugged your nose (like a swimmer? A buddy of mine swims open water and he uses something to plug his nose that is strapless I think) and then tried a different full face mask and cranked the humidifier to avoid dry mouth (maybe a stand alone humidifier instead of an integrated)? Also, I think I remember you stating that your apartment/house had a mold issue and it was cleaned up by the landlord. Maybe the post above about black mold has something to do with all of the nasal problems. Are you still in the same apartment or back in Nova Scotia (I think that is it)? When you were in a different environment did you notice improvement?

I hope the dental device ends up alleviating some/all of your apnea symptoms.

TM

[jskinner]

A buddy of mine swims open water and he uses something to plug his nose that is strapless I think) and then tried a different full face mask and cranked the humidifier to avoid dry mouth (maybe a stand alone humidifier instead of an integrated)?

Yeah I tried that a while back. Problem with trying to breath to my mouth (and why I could not use the Oracle) was that my upper pallat creates a seal against my toung on exhale. My apnea is therefor is not controled and its very hard to sleep at all with the pallet flapping with each breath.

Also, I think I remember you stating that your apartment/house had a mold issue and it was cleaned up by the landlord. Maybe the post above about black mold has something to do with all of the nasal problems. Are you still in the same apartment or back in Nova Scotia (I think that is it)?

I moved out of my condo in April because I thought it might be a factor . No change.

When you were in a different environment did you notice improvement?

Nope. I have stayed in 4 different places since this started. Only thing I have noticed is that I am in a place that causes allergies then things get even worse.