Terrified and don't know what to do...help!!

[garyland]

I really don't know if any one out there can help, but I don't know what else to do. I was using OTC nasal sprays for a few years until it started to burn my nose and cause the back of my nose and throat to become so dry I have difficulty sleeping. I do have a HH which I keep on 2 out of 5 because of rainout. My nose was fairly clear with the cpap all night Wed night, but last night I could not get my nose clear to get to sleep. So I used the 4 hour Neosynephrine MILD formula. It also burned and dried my throat. The steroid sprays don't work for me. I can't sleep with out the cpap and can't seem to sleep with it. I don't know what will be come of me. I am 58 now and can't imagine going 30 more years with this problem. Last night I was lying there in bed just shaking in fear. I did get a few hours of sleep from the spray even with the dry throat. I am trying to loose weight in the hope of getting off the cpap, but I have a long way to go and it is coming off too slowly. The doc says turbinate surgery will leave me congested for about 3 weeks before working. Well I would be dead by then if I could not breathe!

I don't know what any of you can tell me that will help, but I assume that I am not the only person in the world who is in the same boat.

Gary

[dsm]

Gary looong time no see ? - welcome back.

Apart from this reintro hows things - didn't you have some surgery a while back ?

DSM

[Julie]

Oh Gary what an awful night! Isn't it crazy how our minds can make things enormous when we can't sleep? There certainly is help for you and you aren't doomed never to sleep or breathe again, and I'm sure lots of people here will have suggestions. I think you need a referral to a new ENT for starters, one who is not 100% focused on surgery, but even if things come to that, there are ways to deal with the postop congestion and not have you expire from OSA during that time, but you need to talk to the MD (or us :0) re that. I also think you're in a vicious circle of using sprays which on one hand you feel you need, but which on the other are creating a worse and worse backlash situation where the more you use the more you "need" (have you tried the 'neti-pot' saline rinses which others here swear by - certainly worth a shot I'd think). You also didn't post about which mask you're using, and if you don't have a 'full face' mask like the Quattro, Ultramirage, Liberty, and others, you should (check them all at Cpap.com) because they allow you to breathe with your mouth open while getting C- or Apap and not lose all the 'good' air out that way (if you were to only wear a nasal mask). Relax Gary, there are answers, and you'll get better advice if you fill out your profile so everyone can start off by seeing what equipment you're using and relate to it in their answers. PS - I would also try sleeping without the HH for a couple of nights - it's known to cause congestion in many people.

[ozij]

Gary, the human body has a backup breathing route through your mouth - start using it.
Get a full face mask so you can get your cpap treatment while you breathe through your mouth. You can have emergency delivery from cpap.com

Here are the shipping costs for the contiguous United States:

$35.00 - Next Business day by the end of the day (Saturday)
$25.00 - Next Business day by the end of the day (Mon - Fri)
$18.00 – Second Business day by the end of the day
$12.00 – Third Business day by the end of the day
$ 7.00 – Ground shipping on orders under $99.00
$ Free – Ground shipping on orders over $99.00

Use saline rinses -www.neilmed.com

I remember reading that one - or more? - of our members got off OTC sprays it by stopping the use in one nostril only.

Of course, for some of us, too much humidity causes congestion.

If you need more warm humidity - buy a hose cover and a heated hose, they will take of the rainout.

Not being able to breathe can cause real panic - so concentrate on breathing slowly, through your mouth.

Edit: And I just remembered: Fisher and Paykel (http://www.fhphealthcare.com) even have a mouth only mask called "Oracle" - it comes with plugs for your nose to keep you from nosebreathing!

You'll be OK, Gary.
O.

[garyland]

I thank you all for you concern and advice. However, my situation is a little different than most. First of all, I have OCD which compounds this problem and causes more lack of sleep when I am having difficulty. And DSM I have not had surgery. I use saline sprays as needed and some times it helps. I tried a full face mask before and had problems with that. First off, I have to crank up the humidity all of the way to not have a dry mouth. But when I do breathe thru my mouth (dryness aside), something seems to close up in my throat like a one way valve and it wakes me up. I once tried the ORACLE mouth mask and I had saliva and condensation all over the place. If I sleep with out the cpap I wake up every five minutes or so. I have seen an ENT but there is nothing for me but steroids and surgery. On top of the breathing problem, the slightest upset or worry or fear can keep me awake due to the OCD. I know, I am a mess.

If you can think of other things I would appreciate it.

Gary

[ozij]

I wish I could.

O.

[jnk]

I thank you all for you concern and advice. However, my situation is a little different than most. First of all, I have OCD which compounds this problem and causes more lack of sleep when I am having difficulty. And DSM I have not had surgery. I use saline sprays as needed and some times it helps. I tried a full face mask before and had problems with that. First off, I have to crank up the humidity all of the way to not have a dry mouth. But when I do breathe thru my mouth (dryness aside), something seems to close up in my throat like a one way valve and it wakes me up. I once tried the ORACLE mouth mask and I had saliva and condensation all over the place. If I sleep with out the cpap I wake up every five minutes or so. I have seen an ENT but there is nothing for me but steroids and surgery. On top of the breathing problem, the slightest upset or worry or fear can keep me awake due to the OCD. I know, I am a mess.

If you can think of other things I would appreciate it.

Gary

Gary,

I still think if you go through ozij's post line by line and give full thought to each suggestion, you may find a solution in there. Please give it the full once, twice, and three-times over, even searching on some of the things she mentioned.

I know exactly what you mean when you talk about the throat closing off like a one-way valve and that waking you up. Try all the things mentioned above for making a full-face mask work. I eventually got to where a full-face would work for me once I got used to that sensation you mentioned in your throat. But I found eventually that I do better with nasal pillows when my sinuses are clear enough. Gargling with salt water and doing a thorough nasal rinse helps me use the nasal pillows even when my sinuses feel mostly blocked. If the water in your hose and mask is a big problem, get a hose cover to insulate it or lower your machine. Keep researching and trying the things ozij mentioned. You will make it work.

jeff

[MusicMan]

I know exactly what you mean when you talk about the throat closing off like a one-way valve and that waking you up.

I really don't think you have a clue as to what he means. Weren't you told to keep your opinions to yourself for at least two years? Am I going to have to bring the backroom boys out to deal with you? They has has been talk about using the eggs and tomatoes on you. So SHUT UP already!!!

[garyland]

I have a full face mask that I once tried unsuccessfully. I may use it tonite to see if it helps at all.

Almost all of my fears and anxieties center around sleep or lack of it. I feel this is due to the horrible withdrawal I had from Ativan in 2003. I remember sleeping 1 1/2 hours a night for a few weeks due to the w/d. This was pre-cpap. When you have anxieties about not sleeping it sets up a loop. The more you have trouble sleeping the more you angst over it. The more you angst the less sleep you get. Performance anxiety in men would be a similar kind of situation where a loop is set up.

I will try the suggestions here that I have not already tried.

Gary

[dsm]

Gary,

I think it was you trying an Oracle mask that I was trying to remember. I sort of recall talking about it with you but that must have been over 2 years back.

I trained myself to mouth breathe - was doing so last night. Since choosing a Quattro amd very happy with it.

Good luck

DSM

[Snoredog]

um Gary, you don't want me to pull up your very first few posts here as a newbie where we tried to warn you about that do you?

Even though I only have about a half a brain left due to the effects of 2 strokes, I do have a good memory. If I recall correctly you disputed our suggestions of not using Afrin because you were diluting or mixing it 50/50 with something else. We tried to explain where your theory of doing that was flawed, but your response was you had a very good ENT advising you along the way.

Our explaining of the rebound effect associated with OTC sprays were ignored, our explanation of Afrin like sprays being a vasoconstrictor were ignored. As we tried to explain before continued use of those sprays can cause permanent damage to your nasal passages, they were only meant to be used for a maximum of 3 days, NOT every night for years on end.

Continued use of those sprays shrink turbinate and nasal tissue in the short term (first 3 days) by constricting blood vessels in that tissue. After that the rebound effect kicks in and the tissue reacts with inflammation and swelling. Continued use of those sprays constricts the blood vessels so much where that tissue dies. Just like cutting off blood flow to your foot, the foot will die. So the inside of your nose probably resembles leather from dead tissue, it is that way because those sprays killed the blood vessels that kept the tissue alive.

Your only option is to fire that ENT that gave you the poor advice in the past. See one with experience and maybe they can correct the dry nose syndrome you are experiencing and get you unhooked from the OTC sprays. They may even have to do some tissue grafts to restore normal nasal function.

The ONLY thing you should USE in your is a saline solution to rinse out allergens with a neti-pot. If your ENT's only solution is use of nasal steroids, well I'd keep looking for an ENT. If you have a bone spur, nasal polyp or a deviated septum, no spray or steroid in the world is going to correct that.

My suggestion is:

1. Get a Neil-med Rhino wash kit and follow its directions (cost about $15 bucks).
2. See a good experienced ENT for a status of your nasal passages. FIRE your existing ENT
3. Get a big box, gather up all your nasal sprays and prescription nasal drugs and toss them in the trash.

[MrSandman]

Actually Snoredog - Nasal steroid spray will shrink if not make nasal polyps disappear and it most certainly is a drug of choice to prevent polyps from returning. There is worse things than polyps and I had it and I had to use sprays for years to prevent it from returning since it could return as cancer. I have made it many years but unfortunately I think it is returning.

OK so you did what you shouldn't have done and messed up your nose. So now what? Yes I have OCD but it is "pure O" with ruminating on intrusive thoughts being the main issue.

A good ENT should be able to help you even if they have to insert tubes while you heal. Worse case is a Trach hole you could breathe through until you heal. I am like Snoredog and just don't think cpap orally works properly. If nothing else your ENT or a Dr. could prescribe oxygen while you heal and it is great. I wish I could use it every night.

[garyland]

Snoredog,

Can I get that Neil med stuff at a local drug store? How is it different from the saline sprays that I have been using?

Gary

[jnk]

List of stores that should have it:

http://www.neilmed.com/usa/netipot_adwo ... 3godiw4pJQ

[BallBuster]

List of stores that should have it:

http://www.neilmed.com/usa/netipot_adwo ... 3godiw4pJQ

Weren't you warned that your opinion is not wanted around here? Be forewarned that some of the long-time posters can be a little protective of the format, and rightfully so. A lot of group-think went into how it landed.

As for me, I'm not gonna suggest any changes till I've been here a year or two. Even then, I fully expect to get chewed out for suggesting it.

So, again, I applaud the thought. I'm just saying "duck" as a heads-up. I think I saw some eggs and tomatoes being passed around in the front row, and there's no chicken-wire in front of this stage.

You would look pretty stupid with eggs and tomatoes on your face. Be warned.