Need your advice-

[FoxNewsFan]

First post on this sleep apnea forum

I need advice-

I’ll try to make a long story as short as I can

First, a short introduction-

My name is Ed and I live on eastern Long Island, in NY.

My wife said that I was not breathing for 10-15 seconds at a time and I was very tired so I went to my family doctor. When I told him what my wife said he laughed and said that it couldn’t be that long. (actually it was up to 90 seconds) He said I should go to a sleep doctor and get a sleep study. He couldn’t make any recommendations because he really didn’t know much about the topic. My insurance only had three listings under sleep in NYS, (participating providers) and the nearest one was 100 miles away. I looked in the Yellow Pages and found a sleep clinic. I’ll call the clinic XX I called them and they recommended a Dr.

I researched the Dr. and found out that he was recruited from a nearby country to run the sleep clinic at a nearby State University. Now he is in private practice. Sounds good, right?

When I talked to the sleep tech. that ran the sleep clinic I got some bad vibes. I’ll skip these unless someone asks me later.

I made an appointment with the sleep Dr and he recommended Sleep Clinic XX. I told him about my reservations and he poo pooed them. I now realize that they recommend each other, enough said.

I made an appointment with XX. The 1st night he hooked me up to about 13 wires and I slept there. These are the results, (which they didn’t want to give me)-
The Baseline PSG Sleep Study reveals the following-
Total sleep time 319 mins. With a Sleep Efficiency= 80.9
Sleep latency= 14.0 mins.
Sleep stages were as follows:
Stage 1 =7.8%
Stage 2 =80.9
Stage REM =9.4
Stage SWS =1.9%
SpO2: Baseline Oxygen Saturation was 94% The lowest sleeping SpO2= 68% The mean sleeping SpO2=86% SpO2 was below 90% for about 75% of the night.
ECG Demonstrated sinus rhythm with frequent PVCs.
EMG There were 4 PLMs observed during the study.
EEG No seizure activity.

This baseline PSG sleep study results are consistent with SEVERE Sleep Apnea Syndrome (AHI, 69.9) and trivial myoclonus.
. In the morning he went over the results and said that I had BAD sleep apnea.

The next week I had the PAP Titration.

He put on a full face mask which didn’t fit. He fiddled around with it, making it tighter and tighter until it finally stopped leaking. The first time he left the room I said to my self, wow, this is like being in a straight jacket. Little did I know that it would keep leaking and leaking and he would keep making it tighter and tighter. I pride myself in being a tough person who can take a lot of pain but finally somewhere in the middle of the night I called him in and said that I can’t take it anymore. The little cubical spacer in the middle of my forehead was giving me a terrible headache. (That spot was sore for the next 2 days) and the mask had completely squashed the rubber padding and the hard plastic was digging in the cheekbones. Each time he had adjusted the mask he got more and more brusque and kept saying that the reason the mask didn’t fit was because my cheekbones stuck out and had fat on them. By this time I had had it and I said to him, you know, not for nothing, but I had the same cheekbones and fat last week. Why didn’t you get me a mask that would fit? (In my whole life, no one as ever said that my cheekbones stick out) He finally got another mask and he said to me, this mask costs $250 and some insurance companies only pay $250 for the entire sleep study. This didn’t make any sense because previously he had said that my 2 insurances were great and he didn’t give me a mask anyway

Interpretation report-
The variable PAP provided only partial relief from the apneas/hypopneas seen on the baseline study night. The CPAP study had 200 minutes of total sleep time with 23 mins. in REM. The O2Sat averaged 91% and was below 90 for about 40 % of the night. The RBI was < 54.8.

Initial diagnosis: 1 Obstructive sleep apnea syndrome (780.53)
2 Fragmented sleep (780.56) yielding Hypersomnia (780.54), both secondary to and caused in part/whole by item #1.

Recommendations:
Home VPAP set at Inspiratory 24 Expiratory 18 with spontaneous breathing mode at 12 bpm delivered via a medium sized nasal mask with heated humidification. (Full was crossed out and nasal written in by the Dr.)

I told you the whole story so I could ask; do you think the sleep study results are valid since I had such difficulty with mask fit?

I now went back to the sleep Dr. and he went over my Sleep Study. (Meanwhile I found this forum and started lurking) I said that I wanted a fully data capable machine and asked him about bringing in the smart card. He poo pooed the idea and said he didn’t need the data and that he could learn a lot more from that little thing that they put on your finger. (Meanwhile, I don’t have that little thing!!!) He wrote me a script and I took it to my local DME. They gave me a ResMed VPAP III ST machine with heated humidifier and a Mirage micro mask. I started on June 1st. I go back to the sleep doc tomorrow, June 20. (I am working hard to learn this new foreign language called sleep apnea.)

Did I get a fully data capable machine?

The machine is OK but I’m not happy with the mask because some nights it leaks and I have to adjust it 4-5 times during the night. Also, the hose seems heavier than it should have to be. I usually have it going straight back over my head but if it goes off to the side the mask starts leaking on the opposite side. Sometimes I wake up and it sounds like a hurricane coming out of my mouth. The Dr. said, don’t worry about air coming out of my mouth. He doesn’t want to give me a full face mask because I might regurgitate and the machine will force the vomit into my lungs.

Should I switch doctors to one that wants to see the data on my machine? I can’t imagine a doctor who wouldn’t want to know how many apneas I am having, etc.

How long do I have to return my present machine and get another in case mine is not fully data capable?

Some days I feel well rested and others I feel that my sleep wasn’t as good as it should be.

Two great side benefits, I haven’t had to get up yet to go to the bathroom during the night. Used to go 3-4 times/night. I feel that I have gotten a massive dose of testosterone, if you get what I mean?

I have to baby sit my 2 grandchildren all day today, 1 and 3 yrs. and will be checking the computer all day anxiously awaiting your comments. Thanks for your time.
Ed

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, humidifier, mirage, hose, Titration, CPAP, DME, Smart Card

[Shilohcane]

I just went through what you did a few weeks ago. My AHI=58.9 and my low O2= 72. I by-passed the DME stuff and talked my Reg. Doctor into giving me a prescription for a APAP that's all it said. Then selected ResMed AutoSet II that's computer gives me great results at 11 CM instead of the 13 CM the sleep study said I need. The machine should last 5 years and that $18 a month but all I have to pay $500 deductible and my Insurance picks up the rest. Funny they charge me more for saving them money. I don't know your financial condition but my comfort and need to be at the right pressure for the next 5 years was more important than a standard cpap my DME would have put me on.

The mask is where you have measure your self and look at cpap.com that will help you select what mask fits you. By reading this board and that yellow light I know more about sleep apnea than my Doctor ( his words ) and more than my golf buddy that is a cardiologist and been using a standard Cpap for three years. BTW, my buddy just pick up the same Apap as me that arrived today and I will set it up for him.

I'm not recommending you by-pass your DME but if you do your home work you don't need a DME. BTW, love your board name. No CNN for me.

[sleepydoll]

Gee Ed !
1. I don' t know much about the results, since I'm a newbie....but what bothers me is the "dual recommendations" between doctors...sounds fishy !
2. The lowest sleeping SpO2= 68% The mean sleeping SpO2=86% SpO2 was below 90% for about 75% of the night.
WOW !!! That's not good at all ! Average people need to be above 94% to be normally oxygenated!
3. I think think the sleep study results are valid even if you had such difficulty with the mask fit...the first part of the study speaks for itself.
4. Please, switch doctors to one that wants to see the data on your machine.I can’t imagine a doctor who wouldn’t want to know how many apneas you're having, etc. They are supposed to be there for you, not for your money!
5. You have about 30 days to return your machine, usually they sobtract a certain amount per week, since they "loaned it" to you....please check with the DME and your contract...
I hope this helped a bit.
Keep us informed on your progress through this sometimes awakened nightmares we have to go through!

[Pineapple]

I’m not happy with the mask because some nights it leaks and I have to adjust it 4-5 times during the night. Also, the hose seems heavier than it should have to be. I usually have it going straight back over my head but if it goes off to the side the mask starts leaking on the opposite side.

Many people have trouble stopping mask leaks at first while they learn how to sleep with it. That said, I will tell you that if your micro is the wrong size I found it leaks like a sieve. It also took me quite a while to get it adjusted. If it doesn't improve, I would suggest going back to the DME and try a different mask. Most DME's have a 30 day guarentee, it doesn't work, you trade it. The mask is the most important part of your therapy, If you're not com,fortable with it, you won't do well.

Sometimes I wake up and it sounds like a hurricane coming out of my mouth. The Dr. said, don’t worry about air coming out of my mouth. He doesn’t want to give me a full face mask because I might regurgitate and the machine will force the vomit into my lungs.

You're mouth breathing - a therapy no-no, and it's not OK. Have you tried a chin strap? This is the first time I've heard someones doctor refused to perscribe a full face mask because they were afraid you would vomit. Maybe someone who has your machine can shed some light on if this is a real concern.

My doctor is also uninterested in whats on my data card, I still find in hard to believe that doctors base thier treatment on a one night sample in less than ideal circustanses. But this seems to be the norm. Since I don't know your machine, I can't answer if you're fully data capable, but one of the gurus should be able to answer that for you.

Two great side benefits, I haven’t had to get up yet to go to the bathroom during the night. Used to go 3-4 times/night. I feel that I have gotten a massive dose of testosterone, if you get what I mean?

Both are a therapy baby step. It is a sign that something is working. Keep it up. Good Luck.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): hose, DME

[roster]

Welcome aboard Ed. Just ignore the drive-by guests.

[JZ]

My advice is to stop watching Fox "news". It will eat away your brain faster than the lack of oxygen you are concerned about.

Ha, ha, Guest. This might be the kind of lighthearted or semi-serious joshing forum members who have been around for awhile might send each other's way. I can appreciate your sentiment, but this response to a newbie is way inappropriate. I am a liberal, quite liberal actually, but I don't care if FoxNewsFan is to the right of Attila the Hun, he deserves a welcome here and some serious responses to his questions.

So, FoxNewsFan -- you are welcome here. I guess over time you might expect some reaction to your chosen username, but frankly Guest did not even have the guts to use his or her real username, so I would ignore that post.

If you have the option to find a new sleep doctor, I think it would be a very good idea. What the doctor told you about vomiting in a full face mask is odd unless you told him you have a problem with vomiting during the night. If not and if you feel confident that you would wake up should you vomit into a ff mask, you may want to explore the various ff masks available.

It sounds like you are only mouth breathing part of the time. I would guess that your therapy is working to some extent based on the reduced nighttime bathroom visits and the increased libido. But when you are mouth breathing, you are likely not getting much therapy. There are a number of forum members who are knowledgeable about VPAPs who I hope will weigh in to discuss this mouth breathing issue.

Here is a link to some information on hose management, which seems to be giving you some problems:

viewtopic.php?t=10640

Good luck to you and stay engaged in this forum as there is a wealth of information available here.

Janna

[roster]

[

Janna from Texas is quite liberal. More covering up by Dubya.

On the other hand, there are more Jannas in Texas that any other state. http://names.whitepages.org/Texas/first/Janna

[betty303]

Hi FoxNewsFan

Welcome to the forum and kudos for putting out your experience and asking questions. That is what this forum is about - ask for and getting/giving help to one another.

I find it interesting that your Dr. was worried about vomiting while using a full face mask - never heard that one. Have heard docs being worried about vomiting if you had your mouth taped to help avoid mouth breathing. #1. Full face mouths have a quick release connection that that makes it easy to open it off your face. #2. you can also pull the mask out off your face, even with all the hooks fastened - at least a little bit. #3. Unless someone is unconscious, I have not heard (others can correct me, if they have) of someone vomiting without at least a little warning that it is coming. I don't vomit often, but whenever I have, I have always had enough warning to put my head over a wastebasket or even all the way to the toilet first.

With taping your mouth to help avoid mouth breathing - there is all kinds of advice on various threads on mouth breathing (do a search) about what kind of tape to use. how to turn tape at the edges to pull off quickly, how to use fixodent, etc.

You can also try chin straps as others have mentioned and/or ace bandages around your chin.

Keep searching for medical personnel that know more than your current doctor - it took me quite a while to find a good resource (ended up being the director of the sleep center after trying a couple of pulmonologists, two family physicians, a phsychiatrist who was a certified sleep doc, and various DME people.)

AND....do count on getting good advice from this forum. I have found that many questions are best answered here - sometimes at any hour of the day or night.

Welcome and good luck on your search.

[alnhwrd]

Welcome to the Forum! Sounds like you have had quite an experiance so far. I would not care to have a Dr. who is uninterested in the results of the therapy he has prescribed and doesn't think mouth breathing is a problem to be addressed. I would switch docs or take care of business myself. I don't know your machine, but since it is a Resmed try holding down the left and right buttons at the same time for about five seconds and see if that gets you into the "Efficiency Menu". This will give your nightly average pressure, leak rate, AHI, AI and HI. AI is Apnea index, or the number of times per hour on average you completely stopped breathing, and HI is Hypopnea Index, or number of times per hour your breathing was reduced or slowed. Put them both together and you have your AHI. The goal of Xpap therapy is to get your AHI below 5.0. There is software available that will let you download more detailed nightly data to your home computer, but I don't have it so I can't tell you much about it. But if you really want to know what is going on while you sleep. it is the way to go.

In spite of some bad experiances, it seems like the treatment is doing you some good, so stick with it. I would guess that your willingness to do so and make this work is the source of your good results. If I were you I would definitely get a full face mask or start fastening my mouth shut at night with tape or polident strips, unless there is a medical reason for you not to do so, such as a condition of some kind that causes you to be nauseous and vomit in your sleep frequently.

You have a good attitude. Thanks for your post and keep us updated on how things progress.

[ozij]

Hi Ed, and welcome to the forum!
I agree with what the registered members have already said.

Not getting up at night, and the dose of testosterone are both indications that your therapy is working, so that's one good reason to relax a bit (I'd call those much more than baby steps, though).

An inhale pressure of 24 - which you seem to need is way up there at the top of the scale - and keeping masks from leaking with that is not too easy, for either you of the tech. The tech may have been surprised at the pressure, but cinching the masks down, is not solution.

Try using Mac's silicone earplugs - rolled into a snake - as silicone putty to improve the seal on your mask.

At try letting the hose dangle from above your head to keep it from pulling the mask sideways. I run my hose through a girl's hair scrunchy, tie a clean shoelace to that, and hang the loop of the shoelace on from a picture hook on the wall. Others have more elegant solution, and some use the headboard.

Your doc is - rightly concerned with your very low oxygen saturation during sleep. Don't let those number mislead you: If you were hospitalized and they found your O2 saturation below 90% they would start giving you supplemental oxygen - that's how bad you had it. Ask the doctor about having your pulse oxygen checked with the machine.

Each cpap company has a site, with detailed info about their machines. Resmed's VPAP ST is described here: http://www.resmed.com/en-us/products/fl ... u=products. It's fully data capable.

I too am extremely surprised at what looks like your docs fear of full face masks - on the one hand, and his cavaliear attitude to mouth leaking. If the pressurized air is escaping through your open mouth, it does not go back where it has to, to open the obstruction. However - and this is a guess, not something I know - it could be that the S/T mechanism of your machine takes some care of that - I don't know for sure.
S/T stands for "spotanaeous/timed" meaning that if the machine doesn't sense your spontanaeous breathing, it is timed to supply pressure at the rate of 12 breaths per minute - its not just waiting for you to initiate breathing.

So, in summary:
You were properly diagnosed with severe sleep apnea.
You were given the kind of machine that can supply the high pressure you need to keep your airway open ("patent" is the jargon word for that...) you also need pretty hight pressure on exhale.
The machine is fully data capable.
You are already feeling the benefits of the therapy you're getting.
The tech and doc. have some weird ideas - but you've come to the right place to learn a lot about the way to make this therapy as comfortable and as effective as possible.


All in all, not a bad start.

O.

[FoxNewsFan]

Thanks all for your GREAT info. It was very helpful.

I accessed and copied down my data from last night. I would appreciate any comments that you could make about it.

Ed

Day;
leak= 62L/min
VT = 350-550
Resp. Rate= 12-25
MV = 4.8-11.8
AHI= 4.8
AI= 2.2

[Guest]

This reply is not meant to derail the topic. However, Ozij, that was such a great reply! The first time I wrote in to this forum as an apnea newborn with a question, you and rested_gal just jumped in to my aid! I am forever indebted to the two of you. And you're still doing your good and gracious deeds.

I've been thinking about this taping issue lately. You know, I think that those of us who must tape are much more likely to die of heart failure or disease is we don't tape than we are from vomitting in our sleep if we do tape. I've not looked up the statistics on this (there are probably none), but it makes sense to me. I bought a different brand of tape last week and when I tried it, it pulled the skin off my chin. So I've been untaped for the last 2 nights and my DH said that he could here the air escaping from my mouth. Now, that's just plain dangerous. It's back to Nexcare Gentle Paper for me.

[FoxNewsFan]

Went to see the sleep doc today. Gave him my sleep data.
Day;
leak= 62L/min
VT = 350-550
Resp. Rate= 12-25
MV = 4.8-11.8
AHI= 4.8
AI= 2.2


He was very interested. He's an older doc who probably hasn't kept up to the technology. It was almost as if he had never seen this stuff before but he didn't poo poo it, instead, he took a lot of time to explain it to me.

I showed him the printout for the clinicians data on the ResLink, ResScan and oximeter. He was very interested and he kept the printouts and wrote me a script for all 3. I went to my DME and he said he could get me the ResLink and oximeter but not the ResScan because ResMed only wants the clinicians to be able to access this data. I told my DME that I read on a forum that I could order the software from an online DME and he said he really didn't care but he didn't want to get others upset. (Where can I get the ResScan software?)

I told my sleep doc that I would print out the data from ResScan and bring it to him and he was VERY INTERESTED. I said I could e-mail it to him but I just got a blank look.

He said that my data looked good and I felt MUCH BETTER about the whole sleep thing. He said that he didn't think the PVCs damaged my heart but that the low O2 level was bad. Thank goodness I decided to investigate this whole sleep apnea thing when I did.

Ed

[Guest]

I have the problem with mouth breathing and taped my mouth shut. Then the air blowed my cheeks out like Dizzy Galespi. I tried to swallow the air, but it just kept blowing my cheeks out til I just took the tape off. I guess I will try a chin strap....

[JeffH]

I have the problem with mouth breathing and taped my mouth shut. Then the air blowed my cheeks out like Dizzy Galespi. I tried to swallow the air, but it just kept blowing my cheeks out til I just took the tape off. I guess I will try a chin strap....

Get a terry cloth head band and put around your cheeks / mouth. That will stop the "blowfish" effect. I know, I do it every night.

My advice to FoxNewsFan.....change your handle.