High nasal airway resistance (NAR) has been reported in Marfan's syndrome.
Question:
"Wim Vogelaar" <wim.vogelaar at mc2world dot org> wrote: >> It’s always better to get the opinion of more than one doctor. >I am not sure about what you are suggesting. Do you mean that I should have >contacted more physicians in the past, e.g. in 2003? If yes, then I am >curious to know what advise you would have given me at the end of 2003. What >kind of additional physician should I have contacted by that time? By that >time the word apnea was unknown to me.
I’d known for a long time that I stopped breathing when I slept, but I first heard of "Sleep Apnea" around 1982. My doctor at the time knew about it, but said that I couldn’t have it because I didn’t fall asleep during the day. Eight years, and two doctors, later, I finally got a referral for a sleep test. I’m sure that any doctor would have recognized the symptoms in 2003, I’m not sure that they’d have known enough to treat you for it. 
Tom
Response:
"Wim Vogelaar" <wim.vogelaar at mc2world dot org> wrote: >> a ResMed Mirage Full-face mask. They come in two series, and a >> bewildering array of sizes, so it’s important to have it >> professionally fitted. >Today I have bought a ResMed Mirage full-face mask. However, all maks I >tried were leaking. The lady told me that it is more difficult to find a >full face mask that fits than a nasal mask.
That’s probably true, but there’s no reason to accept a mask that leaks. FWIW, people here with Mirage masks say that the looser the fit, the better the mask works. >So I tried to select the one >that is not leaking too much. Now I intend to start the night with the nasal >mask (ResMed Mirage Vista) and when the nose gets blocked during the night I >will change the mask (and the mask type setting in the machine) and try the >FFM.
Please let us know how it works. >I tried already with maximum heating in combination with water. But it >didn’t help to prevent that my nose was blocked at one side.
It may take a few nights to start working, but most of us find that heated humidity clears up many long-standing sinus problems. (Fair warning, I know nothing about Marfan syndrome.) Tom
Response:
> FWIW, people here with Mirage masks say that the looser the fit, the > better the mask works. > Please let us know how it works.
This night I used the Full Face Mask. See graph at: http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/whv20050303.htm This full face mask was leaking (causing wind through the beard). But strange enough the graph shows less leaking during that last hour. So the leaking through the beard is apparently seen as part of the normal leaking through the vent of the mask. Possibly because the leaking is quite constant, without a lot of fluctuations.
Response:
> Most people with apnea have a blockage at the rear of their nasal cavity > where it joins with the back of the mouth. The muscles relax, and this > closes to air from the nose, which the CPAP, of course, has enough > pressure > to overcome.
what??? for MOST people, the blockage is not in the nose, so if the air is going in your nose and out your mouth, it hasn’t GOT to the blockage yet……… This is dangerous info to be giving out I have no idea where you got the idea that apnea is just a nasal thing……but in the majority of cases, it’s terribly wrong — Beth in Australia ————————– Unless stated otherwise, anything I say here is my opinion only – I am not a medically trained professional FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles
Response:
On Fri, 4 Mar 2005 11:48:46 +0100, "Wim Vogelaar" <wim.vogelaar at – Hide quoted text — Show quoted text -mc2world dot org> wrote: >> FWIW, people here with Mirage masks say that the looser the fit, the >> better the mask works. >> Please let us know how it works. >This night I used the Full Face Mask. See graph at: >http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/whv20050303.htm This full >face mask was leaking (causing wind through the beard). But strange enough >the graph shows less leaking during that last hour. So the leaking through >the beard is apparently seen as part of the normal leaking through the vent >of the mask. Possibly because the leaking is quite constant, without a lot >of fluctuations.
Wim, these results are not horrendously bad. The Spirit will actually do a reasonable job with leak of up to 0.7 l/s, although it is best to try to keep it below 0.4. That may not be possible with a FFM. The machine does know the difference between leak through the vent and other leak. This is because the pressure and the rate of flow through the vent for that pressure are known – you tell the machine that with the mask choice setting. Anything else is leak through other means. — .andy To email, substitute .nospam with .gl
Response:
Wim, I think what Beth meant is the risk of inducing Central Apneas by using an XPAP at a setting that is higher than you need. I have no particular knowledge about this, but I have seen it discussed many times here. I suggest you go to the Google version of this newsgroup and do a search on "Central Apnea" Anna in article 42262927$0$29525$dbd4b…@news.wanadoo.nl, Wim Vogelaar at wim.vogelaar at mc2world dot org wrote on 3/2/05 1:59 PM: >> so did you go ahead and buy a CPAP wihtout a sleep study? you were having >> trouble getting one weren’t you? you’re takign a huge risk if you did, >> your lack of knowledge about apnea & CPAP is dangerous > Beth, thanks for your words and warning. I understand what you are saying. > What you are saying might be applicable for 80 % of the patients. But not > for all. Especially not for persons with a disease of which doctors have not > much knowledge.
Snip – Hide quoted text — Show quoted text -> So what is dangerous. In my case it is very dangerous to do and believe what > regular doctors are saying. Just because I am trying and doing things I > discover what is wrong. Thank God! > It is like you are on the roof of a burning building. You are considering to > jump. But everybody is saying "don’t do that, you could break your leg". As > if staying on the roof would be more safe. > Wim Vogelaar, http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/
Response:
> It’s always better to get the opinion of more than one doctor.
Hi Buck, I am not sure about what you are suggesting. Do you mean that I should have contacted more physicians in the past, e.g. in 2003? If yes, then I am curious to know what advise you would have given me at the end of 2003. What kind of additional physician should I have contacted by that time? By that time the word apnea was unknown to me. It was just in 2005-01-10 that I discovered the word apnea for the first time. You can read a description of my symptoms at that time (2003) at page: http://home.wanadoo.nl/w.h.vogelaar/marfan/ I am curious about what your advice would have been.
Response:
> Mouth breathing, with any nasal-only mask, will decrease the benefits > of any sort of PAP. If you can’t get it under control then I’d suggest > a ResMed Mirage Full-face mask. They come in two series, and a > bewildering array of sizes, so it’s important to have it > professionally fitted.
Today I have bought a ResMed Mirage full-face mask. However, all maks I tried were leaking. The lady told me that it is more difficult to find a full face mask that fits than a nasal mask. So I tried to select the one that is not leaking too much. Now I intend to start the night with the nasal mask (ResMed Mirage Vista) and when the nose gets blocked during the night I will change the mask (and the mask type setting in the machine) and try the FFM. > Chances are that your sinuses are actually reacting to the drier air > at lower temperatures. Adding humidity, you won’t even notice the > heat, will almost certainly improve things.
I tried already with maximum heating in combination with water. But it didn’t help to prevent that my nose was blocked at one side. But that is possibly caused by the characteristic of the Marfan syndrome. I was surprised that I didn’t feel warm air. But I realise that the temperature is only a few degrees higher than that of the temperature in the room. So possibly you cannot really feel that the air is heated.
Response:
On Wed, 2 Mar 2005 21:59:26 +0100, Wim Vogelaar <wim.vogelaar at mc2world dot org> wrote: > So what is dangerous. In my case it is very dangerous to do and believe > what > regular doctors are saying. Just because I am trying and doing things I > discover what is wrong. Thank God!
It’s always better to get the opinion of more than one doctor.
Response:
"Wim Vogelaar" <wim.vogelaar at mc2world dot org> wrote: >1) Is an xpap machine a good solution for high nasal resistance >problems? If yes, what kind of mask is desirable (in combination with ResMed >AutoSet Spirit) ? Is that a normal practice with xpap to breath mainly via >your mouth?
Mouth breathing, with any nasal-only mask, will decrease the benefits of any sort of PAP. If you can’t get it under control then I’d suggest a ResMed Mirage Full-face mask. They come in two series, and a bewildering array of sizes, so it’s important to have it professionally fitted. >2) Can I use the heating feature of the ResMed AutoSet Spirit without >putting water in the humidifier. Or will it damage the apparatus? I think >that warm dry air will be better for me.
Chances are that your sinuses are actually reacting to the drier air at lower temperatures. Adding humidity, you won’t even notice the heat, will almost certainly improve things. Tom
Response:
Humidity without heat is okay for some folks, particularly at lower pressures. Heat without humidity is a bad idea. Heated humidity will probably help with the blockage issues. Mouth breathing is bad. Try a serious (i.e. wide elastic band) chinstrap. Chinupstrip is largely a hoax. regards, eric pearson nonono.ericp1.non…@nonono.fuse.net On Wed, 2 Mar 2005 12:16:28 +0100, "Wim Vogelaar" <wim.vogelaar at – Hide quoted text — Show quoted text -mc2world dot org> wrote: >I am using now since two days the ResMed AutoSet Spirit. I am using it in >combination with the ResMed Mirage Vista mask (standard). My biggest problem >is to keep my mouth closed. I tried already with a chinup strip >(http://www.chinupstrip.com/ ). But even that strip didn’t help enough. >I now think that my problems are (partially?) caused by high nasal >resistance. My nose blocks easily. Without the xpap the nose blocks when the >air in the bedroom is too cold (colder than 18 degrees Celsius). >The end of March a visit to the ENT physician is planned. Then those >assumptions can be checked. >Meanwhile I have two questions: >1) Is an xpap machine a good solution for high nasal resistance >problems? If yes, what kind of mask is desirable (in combination with ResMed >AutoSet Spirit) ? Is that a normal practice with xpap to breath mainly via >your mouth? >2) Can I use the heating feature of the ResMed AutoSet Spirit without >putting water in the humidifier. Or will it damage the apparatus? I think >that warm dry air will be better for me. >I am a patient with the syndrome of Marfan. On page >http://taylorandfrancis.metapress.com/app/home/contribution.asp?wasp=… >is written: >High nasal airway resistance (NAR) has been reported in Marfan’s syndrome, >and this appears to contribute to the development of obstructive sleep >apnoea in these patients. >On page http://www.utmb.edu/otoref/Grnds/nasala.htm you can read : >Rapid maxillary expansion (RME), also known as rapid palatal expansion, is >an orthodontic treatment to broaden the maxillary arch which also serves to >widen the nasal vault and improve nasal patency. The treatment is >nonoperative and can be accomplished in about 3 weeks in patients 3 to 20 >years of age. Many orthodontists feel RME is indicated for posterior >crossbite but contraindicated in patients with normal occlusion, but slow >expansion of the mandibular arch can be performed if both the maxillary and >mandibular arches are constricted. RMA alone is seldom sufficient to improve >severe cases of nasal obstruction. >However, I have age 60, so I have to look for another solution. >Wim Vogelaar, http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/
Response:
> so did you go ahead and buy a CPAP wihtout a sleep study? you were having > trouble getting one weren’t you? you’re takign a huge risk if you did, > your lack of knowledge about apnea & CPAP is dangerous
Beth, thanks for your words and warning. I understand what you are saying. What you are saying might be applicable for 80 % of the patients. But not for all. Especially not for persons with a disease of which doctors have not much knowledge. In short the history of my illness. In 1990 I got numbness on my feet. In 1991 the neurologist said; I don’t know the cause, perhaps it is MS. Don’t bother too much as long as you can stand on your toes and on the back of your feet. In January 2001 I felt at certain moments so bad that I decided to stop with my work (programmer/analyst). I went to my family doctor. He send me to the cardiologist. The cardiologist thought that I had the syndrome of Marfan. So I visited a Marfan physician. In January 2003 I got the DNA report, so it was confirmed. My Marfan physician said always that my health problems were not Marfan related. So the next physician was a neurologist. Some tests were done but no explanation for my health problems. That news I got in June 2003. From that time my family doctor had no more suggestions about finding a solution. He went in the passive mode. In December 2004 my molars were pulled at the right down side. I become very ill at irregular days. I took antibiotics (as advised for persons with Marfan who are visiting a dentist) but from time to time I was still very ill. 2004-12-21 I was so ill that I thought it is better now to call my doctor before I become unconscious. But my doctor refused to do something. I asked my son to bring me to the first aid of a large hospital here in the neighbourhood. There they did some testing, called my family doctor, after which the first aid doctor told me to visit a psychologist to learn to live with my pain. Then in January I found out that my problems were most likely caused by apnea. Then in February I visited my pulmonologist. He explained me the very very long route to an eventual xpap machine. I didn’t want to do that. Just because I am having so many days that I feel really very bad. I think that it has to do with my heart. Now after two days with this xpap machine I see that the numbness in my feet is diminishing. I feel also better. I discover now also that the problems are most likely caused by high nasal resistance. A typical characteristic of persons with the syndrome of Marfan. So what is dangerous. In my case it is very dangerous to do and believe what regular doctors are saying. Just because I am trying and doing things I discover what is wrong. Thank God! It is like you are on the roof of a burning building. You are considering to jump. But everybody is saying "don’t do that, you could break your leg". As if staying on the roof would be more safe. Wim Vogelaar, http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/
Response:
> 1) Is an xpap machine a good solution for high nasal resistance > problems? If yes, what kind of mask is desirable (in combination with > ResMed AutoSet Spirit) ? Is that a normal practice with xpap to breath > mainly via your mouth?
if you’re on cpap and breathing through your mouth, you’re not getting effective treatment, sounds like you should look into getting a full face mask , then it wont’ matter if you breathe through your mouth. so did you go ahead and buy a CPAP wihtout a sleep study? you were having trouble getting one weren’t you? you’re takign a huge risk if you did, your lack of knowledge about apnea & CPAP is dangerous — Beth in Australia ————————– Unless stated otherwise, anything I say here is my opinion only – I am not a medically trained professional FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles
Response:
I am using now since two days the ResMed AutoSet Spirit. I am using it in combination with the ResMed Mirage Vista mask (standard). My biggest problem is to keep my mouth closed. I tried already with a chinup strip (http://www.chinupstrip.com/ ). But even that strip didn’t help enough. I now think that my problems are (partially?) caused by high nasal resistance. My nose blocks easily. Without the xpap the nose blocks when the air in the bedroom is too cold (colder than 18 degrees Celsius). The end of March a visit to the ENT physician is planned. Then those assumptions can be checked. Meanwhile I have two questions: 1) Is an xpap machine a good solution for high nasal resistance problems? If yes, what kind of mask is desirable (in combination with ResMed AutoSet Spirit) ? Is that a normal practice with xpap to breath mainly via your mouth? 2) Can I use the heating feature of the ResMed AutoSet Spirit without putting water in the humidifier. Or will it damage the apparatus? I think that warm dry air will be better for me. I am a patient with the syndrome of Marfan. On page http://taylorandfrancis.metapress.com/app/home/contribution.asp?wasp=… is written: High nasal airway resistance (NAR) has been reported in Marfan’s syndrome, and this appears to contribute to the development of obstructive sleep apnoea in these patients. On page http://www.utmb.edu/otoref/Grnds/nasala.htm you can read : Rapid maxillary expansion (RME), also known as rapid palatal expansion, is an orthodontic treatment to broaden the maxillary arch which also serves to widen the nasal vault and improve nasal patency. The treatment is nonoperative and can be accomplished in about 3 weeks in patients 3 to 20 years of age. Many orthodontists feel RME is indicated for posterior crossbite but contraindicated in patients with normal occlusion, but slow expansion of the mandibular arch can be performed if both the maxillary and mandibular arches are constricted. RMA alone is seldom sufficient to improve severe cases of nasal obstruction. However, I have age 60, so I have to look for another solution. Wim Vogelaar, http://home.wanadoo.nl/w.h.vogelaar/marfan/apnea/
