Severe Sleep Apnea, DR advises not to sleep w/o a CPAP machine

[Melensdad]

OK so we got thrown for a loop. My doctor has confirmed that I have very severe sleep apnea and he says that I am 'dying' many times each night. He says I should NOT sleep wihtout a CPAP machine. I am NOT severely overweight, reasonably fit, 6' and weigh 200#, so the severe apnea will not be reduced/cured by weight loss.

I have found a couple of portable CPAP machines, but they require elctricity and/or battery. Batteries need to be charged for SEVERAL HOURS to last for 8 hours of sleep. And just a battery can cost several hundred dollars.

My concerns:

• I will not be able to actually charge the battery
• I will need to sleep next to an electric outlet
• I will not be able to find an electric outlet in the sleeping areas at the vast majority of the Albergues
• I will end up in small hotels/inns so that I can use a CPAP machine which will limit my Camino experinces

So, if I do end up sleeping most nights in small inns or local hotels so that I can get a bed with an electric outlet, how much of the socialization of the Camino will I miss out on? Or is there ample social interaction outside of the Albergue routine?

 

[cher99840]

I stayed mostly in private places and the social interaction was certainly enough for me. There Is still the evening meal to share and for some, bar time, in which to socialize. You will still need to stay in albegues sometimes though or plan your journey to not end your day in a locale that does not have private accommodation.

 

[SYates]

You are not the first, nor the last, pilgrim staying in albergues with CPAP beside you. Prepare a little laminated card that explains in Spanish your need for having to sleep close to a power point and you will see that most hospitaleros will do their best to accommodate you. Buen Camino! SY

 

[SYates]

How many years did you have the sleep apnea without a CPAP machine? Another month would be fatal?

It could be indeed! Only because an illness is diagnosed late, it doesn't mean you can delay the adequate treatment even further! SY

 

[SYates]

I have had a CPAP for years. I don't take it on caminos; I just try to sleep on my side.

Yes, but every case of sleep apnea is different. The doctor of the Op has clearly stated that he has a severe case of it and should not sleep without a CPAP machine. SY

 

[Saramago]

Consider the permanent solution which is laser. You have a sore throat for several days as the only side effect. My husband had a severe case, couldn't stand the machine, was a fit man and had the surgery at age 45. It doubled his energy, stopped the snoring completely. He had been falling asleep behind the wheel. It is done by a ENT surgeon.

 

[Rajy62]

OK so we got thrown for a loop. My doctor has confirmed that I have very severe sleep apnea and he says that I am 'dying' many times each night. He says I should NOT sleep wihtout a CPAP machine. I am NOT severely overweight, reasonably fit, 6' and weigh 200#, so the severe apnea will not be reduced/cured by weight loss.

I have found a couple of portable CPAP machines, but they require elctricity and/or battery. Batteries need to be charged for SEVERAL HOURS to last for 8 hours of sleep. And just a battery can cost several hundred dollars.

My concerns:

• I will not be able to actually charge the battery
• I will need to sleep next to an electric outlet
• I will not be able to find an electric outlet in the sleeping areas at the vast majority of the Albergues
• I will end up in small hotels/inns so that I can use a CPAP machine which will limit my Camino experinces

So, if I do end up sleeping most nights in small inns or local hotels so that I can get a bed with an electric outlet, how much of the socialization of the Camino will I miss out on? Or is there ample social interaction outside of the Albergue routine?

Hi, Welcome to the forum
I was diagnosed with severe sleep apnea in 2011. Falling asleep at the wheels. Normally the diagnosing doctor will suggest the required pressure setting specific to you. And the manufacturer will pre-program that into the cpap machine. I have been using the RESMED model with built in humidifier. Haven't slept a single day without it.
All your fellow pilgrims will love you for it because it eliminates snoring.

I have walked the Frances and Norte with my CPAP machine. A/C outlet is not a problem. I stayed mostly in alberques and they all had electrical outlets. In rare occasion when an outlet is not nearby, other pilgrims will move and make room for you and some owners will bring the outlet nearer to you via extension. Don't recall ever having any power outage either. So, NO need for battery.

The Spanish word you need is: "enchufe" and some hand signs.

My machine with a charger is about 5 ibs. This extra weight might be a reason to get a portable one. I have back issues so started using luggage transport. On the CF it is cheaper, average 5eu. But on Norte it was more expensive.

I usually call and book ahead to get a lower bunk bed and that helped me avoid any problem accommodation.

I have been looking at lighter machines as well but have not found one that takes water to adjust the humidity.
Please inbox me if you have any specific questions...

 

[Rajy62]

Consider the permanent solution which is laser. You have a sore throat for several days as the only side effect. My husband had a severe case, couldn't stand the machine, was a fit man and had the surgery at age 45. It doubled his energy, stopped the snoring completely. He had been falling asleep behind the wheel. It is done by a ENT surgeon.

Wow that sounds very promising. I am used to my cpap now. Out here in canada, unless something becomes life threatening, we don't always get the best treatment option because it is free. Where did your husband had this done? what is the cost structure?

 

[Saramago]

Wow that sounds very promising. I am used to my cpap now. Out here in canada, unless something becomes life threatening, we don't always get the best treatment option because it is free. Where did your husband had this done? what is the cost structure?

Oh - it was free. It was covered by insurance because he had the sleep study done. He had the Sleep Study done at Norwalk Hospital in Norwalk, CT USA and the ENT named Dr Thomas Vris affiliated with the hospital did the operation.

 

[Rajy62]

Oh - it was free. It was covered by insurance because he had the sleep study done. He had the Sleep Study done at Norwalk Hospital in Norwalk, CT USA and the ENT named Dr Vris affiliated with the hospital did the operation.

Great that is just few hours drive for me. I will dig deeper.

 

[dougfitz]

Consider the permanent solution which is laser. You have a sore throat for several days as the only side effect. My husband had a severe case, couldn't stand the machine, was a fit man and had the surgery at age 45. It doubled his energy, stopped the snoring completely. He had been falling asleep behind the wheel. It is done by a ENT surgeon.

As a word of caution, this is not a solution for every case of sleep apnoea. I have been told my apnoea cannot be treated surgically, so I continue to use a CPAP. I have also been told that my apnoea is not so severe that I have to use it every night. There are some deleterious effects of not using it, least of which is that I might snore, but they are not life threatening. As a result, I have not carried my machine on any of my pilgrimage walks.

I think that if I had been told that it would be life-threatening not to use the machine, I would have found a way to make it as light as possible. Currently, my machine in a padded packing cell and with a mesh bag for the hose weighs about 2kg. It would be a necessary extra burden.

There have been discussions on this in the past, and some good tips about how to manage with a CPAP already.

 

[Saramago]

As a word of caution, this is not a solution for every case of sleep apnoea. I have been told my apnoea cannot be treated surgically, so I continue to use a CPAP. I have also been told that my apnoea is not so severe that I have to use it every night. There are some deleterious effects of not using it, least of which is that I might snore, but they are not life threatening. As a result, I have not carried my machine on any of my pilgrimage walks.

I think that if I had been told that it would be life-threatening not to use the machine, I would have found a way to make it as light as possible. Currently, my machine in a padded packing cell and with a mesh bag for the hose weighs about 2kg. It would be a necessary extra burden.

There have been discussions on this in the past, and I some good tips about how to manage with a CPAP already.

I cannot comment on your case or your doctors opinion. I know each case is different. Good for you that you can get some oxygen and it is not life threatening. It has been a major life changer for others. My husband is now 58 so this wasn't done yesterday.

 

[cher99840]

How common is sleep apnea anyway? We have at least 3 countries represented in this one thread so far, and I have seen other threads that address the subject. It seems that many people have it. Did people just die in their sleep before treatment was commonplace?

 

[Rajy62]

As a word of caution, this is not a solution for every case of sleep apnoea. I have been told my apnoea cannot be treated surgically, so I continue to use a CPAP. I have also been told that my apnoea is not so severe that I have to use it every night. There are some deleterious effects of not using it, least of which is that I might snore, but they are not life threatening. As a result, I have not carried my machine on any of my pilgrimage walks.

Agree with Doug that the solution would depend on its severity and causation and vary from person to person.

Even though apnea may not be life threatening, it is critical that one gets that much needed deep sleep to properly recover from 20k+ walks on a daily basis. When i sleep without it, i am grumpy and jittery the next day. I would recommend trying the machine and then decide whether to use it or not. From the Camino, one can always ship it to sdc should you decide not to use it.

 

[Melensdad]

How common is sleep apnea anyway? We have at least 3 countries represented in this one thread so far, and I have seen other threads that address the subject. It seems that many people have it. Did people just die in their sleep before treatment was commonplace?

Many probably died of heart attacks, which occur at a higher rate for people who don't use CPAP machines but have sleep apnea. Others may have died in car accidents while driving and dozing off. Or many other ways.

 

[Rajy62]

How common is sleep apnea anyway? We have at least 3 countries represented in this one thread so far, and I have seen other threads that address the subject. It seems that many people have it. Did people just die in their sleep before treatment was commonplace?

Insufficient Sleep Is a Public Health Epidemic

I think that title says everything. CDC estimates 50-70 million known cases in the US alone. Many millions go undiagnosed because the doctors are not trained to test for this. I went to a diabetic clinic in the US because I was tired all the time, couldn't go up the stairs and so forth, thought i was about have a heart attach. One look at me, the doctors gave me an ipod like device to sleep. Next day they told be most of my problem was due to severe apnea. They put me on cpap the same night and i slept like a baby the first time in years.

You can google this topic and get all kind of data on this now....

 

[longwalker]

I have been using a cpap machine for about 30 years, my first machine was about 30 by 8 by 8 inches and weighted about 15 lbs, I've also been on the Camino four times. So I am speaking from long personal experience. My suggestion to you would be to take you electric machine with its' appropriate cord , plug and humidifier. You should also take along a note in your credential in French and Spanish about your need for an electric outlet.
My personal experience has been without exception welcoming. Fellow pilgrims always made sure I had a lower bunk so my machine would be safe from harm. In my opinion you will be able to stay in any building that has electrical power.
Take it with you, you'll be fine.

 

[Anemone del Camino]

Wouldn't you know it, I left a message with my dentist to find out about a mouth piece he could make for me so I woudn't have to drag a CPAP machine with me.

There are many causes for apnea, so no answer willl be a match. I just want to be well enoug on Camino without needing electric power.

 

[Rajy62]

Wouldn't you know it, I left a message with my dentist to find out about a mouth piece he could make for me so I woudn't have to drag a CPAP machine with me.

There are many causes for apnea, so no answer willl be a match. I just want to be well enoug on Camino without needing electric power.

Have you tested the effectiveness of that mouthpiece?

 

[Anemone del Camino]

Have you tested the effectiveness of that mouthpiece?

No, but I would suppose it's better than nothing. And not so much for myself but for my fellow bunkers. Mind you, there was one who kept waking me up, night after night, and never clued in to the issue. When I speek to my dentist I will report back.

 

[AnnabelP]

I have a mouth piece that stops my snoring and allows me a full nights sleep that I will be taking with me. My husband knows when I don't have it in!! I know some people need cpap machines but I have found the mouth guard has stopped my irregular heart beats, and I feel better now that I get a full nights sleep without waking myself up!! what ever works is what you need! Buen Camino!

 

[Saramago]

Last year a pilgrim ended her Camino because she made the decision to leave her CPAP at home and had a frightening experience. She is a well-known experienced pilgrim and this was told to me in confidence. During a sleep study at a sleep study center, you spend the night hooked up and are monitored for the number of times you stop breathing outright or are never able to get into deep REM. Severe sleep apnea is related to heart trouble in addition to not getting enough sleep or suddenly and often stop breathing outright. My comment said "consider" the permanent solution. Whether or not anyone there are older threads, growing barnacles for lack of fresh information, is not relevant in that there are newer, safe and, yes, permanent methods of treatment. Being told you stop breathing 30 times a night, having a spouse stay up all night to make sure you resume breathing, falling asleep during the day, behind the wheel with your kids in the car are all serious matters that require proper sleep studies and appropriate treatment. The alternative is not so pleasant.

 

[dougfitz]

Last year a pilgrim ended her Camino because she made the decision to leave her CPAP at home and had a frightening experience. She is a well-known experienced pilgrim and this was told to me in confidence. During a sleep study at a sleep study center, you spend the night hooked up and are monitored for the number of times you stop breathing outright or are never able to get into deep REM. Severe sleep apnea is related to heart trouble in addition to not getting enough sleep or suddenly and often stop breathing outright. My comment said "consider" the permanent solution. Whether or not anyone there are older threads, growing barnacles for lack of fresh information, is not relevant in that there are newer, safe and, yes, permanent methods of treatment. Being told you stop breathing 30 times a night, having a spouse stay up all night to make sure you resume breathing, falling asleep during the day, behind the wheel with your kids in the car are all serious matters that require proper sleep studies and appropriate treatment. The alternative is not so pleasant.

@Saramago, your posts appear to suggest that laser assisted surgery should be the preferred alternative for OSA treatment. I would point out that both the Mayo Clinic and the Australian Sleep Health Foundation consider surgery to be a last resort, generally used only when other treatments have failed. Further, the Mayo Clinic site states 'Removing tissues in the back of your throat with a laser (laser-assisted uvulopalatoplasty) isn't a recommended treatment for sleep apnea.'

It seems to me that if the suggestions you are making were correct, that would be reflected by these peak bodies in the information they are providing to the community. It isn't. Almost the opposite is!

I think that I will continue to rely on the advice of my GP, and should there be a significant change in the treatment options available, pursue those having taken the appropriate specialist advice.

 

[Fritz]

@Melensdad I spent a positive night on the CF with a pilgrim who traveled with a CPAP. His multi lingual pantomime included holding his hand over his mouth, breathing, and then saying "La machina, la machina" . None of the pilgrims in the room objected and the "white noise" of his CPAP was actually a nice sleep aid. His machine did plug in -- I don't know if it also was battery or not. Buen Camino

 

[Melensdad]

@Saramago, your posts appear to suggest that laser assisted surgery should be the preferred alternative for OSA treatment. I would point out that both the Mayo Clinic and the Australian Sleep Health Foundation consider surgery to be a last resort, generally used only when other treatments have failed. Further, the Mayo Clinic site states 'Removing tissues in the back of your throat with a laser (laser-assisted uvulopalatoplasty) isn't a recommended treatment for sleep apnea.'

It seems to me that if the suggestions you are making were correct, that would be reflected by these peak bodies in the information they are providing to the community. It isn't. Almost the opposite is!

I think that I will continue to rely on the advice of my GP, and should there be a significant change in the treatment options available, pursue those having taken the appropriate specialist advice.

I was told the same basic information. Laser is an option in only SOME circumstances. In the Chicago area there used to be advertisements on the radio for laser treatment for snoring on a very regular basis, now I don't even hear them at all, but I don't recall them saying it was a treatment for sleep apnea in their advertisements, just for snoring.

FWIW, I do go to a sleep specialist for my care, not a general physician, this is reasonably new to me, I knew I had issues, just didn't know how badly. I will say that the machine they sent me home with is giving me a great night's sleep for the first time in a very long time. But it is fairly big, too big to pack. I've found 2 different compact/travel machines and may end up buying one of those before I head to the UK in May for my Hadrian's Wall hike.

 

[Deleted member 3000]

I've found 2 different compact/travel machines

Be conscious of the voltage difference. The machine is motor driven, so 220v may burn it up! I needed a second prescription for a second machine, and insurance would not pay for it.

 

[Melensdad]

Be conscious of the voltage difference. The machine is motor driven, so 220v may burn it up! I needed a second prescription for a second machine, and insurance would not pay for it.

Yes I am aware. We travel outside the US regularly and have both voltage converters and plug converters ... and for those who do not know, there is a huge difference between the two!

 

[Saramago]

P

@Saramago, your posts appear to suggest that laser assisted surgery should be the preferred alternative for OSA treatment. I would point out that both the Mayo Clinic and the Australian Sleep Health Foundation consider surgery to be a last resort, generally used only when other treatments have failed. Further, the Mayo Clinic site states 'Removing tissues in the back of your throat with a laser (laser-assisted uvulopalatoplasty) isn't a recommended treatment for sleep apnea.'

It seems to me that if the suggestions you are making were correct, that would be reflected by these peak bodies in the information they are providing to the community. It isn't. Almost the opposite is!

I think that I will continue to rely on the advice of my GP, and should there be a significant change in the treatment options available, pursue those having taken the appropriate specialist advice.

Please refrain from putting words in my mouth to advance your view. As seen above , our surgeon is Harvard/Yale. In no way did I suggest surgery is right in every case. Sheesh! Nor some guy off a radio.

 

[Chacharm]

In an albuergue you can ask another pilgrim to switch bunks with you if necessary, too. Peregrinos are nice, I spit swear. And I am sure everyone will be very appreciative that you want to NOT keep them awake with snoring every night. So glad you got on the machine before the worst happened. Must be nice to be getting enough sleep/oxygen!

 

[hecate105]

Lots of good advice. It can be serious - my Pa-in-law rolled his car and nearly died! But at least he got diagnosed because of it!
I don't know how heavy the portable ones are - but if you need some 'help' - there is a great contraption called a 'Dixon Rollerpack' (made in the US of A) I use one when hiking as I cannot carry a pack. Basically it is a one-wheeled trailer - a healthy person should be able to pull twice as much as they would carry in a pack. It may be of help/interest. It is expensive - but really well made - I carted tent and all my gear up over the Esterel in S France and it coped amazingly well - especially with the rocky terrain.
Whatever you decide - find a solution and get on that Camino!!

 

[Melensdad]

There are 2 different brands of portable units.

Both of the units weigh in at under 1 pound, excluding transformer, mask & hose. So a realistic weight would be right about 2 to 2.5 pounds total for the entire contraption.

 

[Harington]

OK so we got thrown for a loop. My doctor has confirmed that I have very severe sleep apnea and he says that I am 'dying' many times each night. He says I should NOT sleep wihtout a CPAP machine. I am NOT severely overweight, reasonably fit, 6' and weigh 200#, so the severe apnea will not be reduced/cured by weight loss.

I have found a couple of portable CPAP machines, but they require elctricity and/or battery. Batteries need to be charged for SEVERAL HOURS to last for 8 hours of sleep. And just a battery can cost several hundred dollars.

My concerns:

• I will not be able to actually charge the battery
• I will need to sleep next to an electric outlet
• I will not be able to find an electric outlet in the sleeping areas at the vast majority of the Albergues
• I will end up in small hotels/inns so that I can use a CPAP machine which will limit my Camino experinces

So, if I do end up sleeping most nights in small inns or local hotels so that I can get a bed with an electric outlet, how much of the socialization of the Camino will I miss out on? Or is there ample social interaction outside of the Albergue routine?

When I was a hospitalière on the Voie de Vézelay we had a pilgrim with one of these machines. Everyone understood and shifted beds round so he could sleep by the power outlet. Most dormitories have them by the beds. And - as has been said - you won't miss out on conviviality; a lot of pilgrims sleep in private accommodation. Just sorry you've got to carry all the paraphernalia!

 

[dougfitz]

Please refrain from putting words in my mouth to advance your view. As seen above , our surgeon is Harvard/Yale. In no way did I suggest surgery is right in every case. Sheesh! Nor some guy off a radio.

I am not interested in cheap rhetorical tricks, and I am not concerned with presenting a personal view. I am pointing out that there is a body of evidence in the public domain that suggests laser assisted surgery (LAUP) is NOT recommended for the treatment of OSA. For example, this snippet from the Wikipedia article on Uvulopalatoplasty:

Despite adverse results, LAUP continues to be administered by a minority of surgeons.

Or this from the Washington University Physicians page on Otolaryngology:

The procedure has been found to be quite effective at relieving snoring. Despite this, some patients may subsequently develop obstructive sleep apnea.

This is difficult to reconcile with your statement:

You have a sore throat for several days as the only side effect.

I would be interested if you have some objective evidence you can point to that indicates the sources I have quoted are incorrect.

 

[Former member 19626]

Wow that sounds very promising. I am used to my cpap now. Out here in canada, unless something becomes life threatening, we don't always get the best treatment option because it is free. Where did your husband had this done? what is the cost structure?

Just because your doctor didn't suggest, or even tell you about, a treatment that wasn't appropriate for your condition does not reflect on the quality of the health care system in Canada. I have a serious health condition and I am very well looked after by our universal, publicly funded system, thank you very much!

 

[Saramago]

I am not interested in cheap rhetorical tricks, and I am not concerned with presenting a personal view. I am pointing out that there is a body of evidence in the public domain that suggests laser assisted surgery (LAUP) is NOT recommended for the treatment of OSA. For example, this snippet from the Wikipedia article on Uvulopalatoplasty:

Despite adverse results, LAUP continues to be administered by a minority of surgeons.

Or this from the Washington University Physicians page on Otolaryngology:

The procedure has been found to be quite effective at relieving snoring. Despite this, some patients may subsequently develop obstructive sleep apnea.

This is difficult to reconcile with your statement:

I would be interested if you have some objective evidence you can point to that indicates the sources I have quoted are incorrect.

I have shared our own personal experience of our own case and the particular surgery recommended to us for our own case by a Harvard/Yale physician and our 13 year success rate. You will have to argue with yourself. Moderators, this is bordering on pestering!!!

 

[t2andreo]

Ah...that's MY Doug...crusty as ever. Keep up the good work!

 

[Nancy P.]

Consider the permanent solution which is laser. You have a sore throat for several days as the only side effect. My husband had a severe case, couldn't stand the machine, was a fit man and had the surgery at age 45. It doubled his energy, stopped the snoring completely. He had been falling asleep behind the wheel. It is done by a ENT surgeon.

Beware of that Lasar surgery. It did nothing to help me and caused me problems for at least a year. CPAP is the way to go. You can get a very small CPAP machine (Transcend Auto Travel CPAP Machine with EZEX) that weighs about a pound.

 

[Rajy62]

Just because your doctor didn't suggest, or even tell you about, a treatment that wasn't appropriate for your condition does not reflect on the quality of the health care system in Canada. I have a serious health condition and I am very well looked after by our universal, publicly funded system, thank you very much!

True, i should put the blame more on the doctors than our medicare system.

 

[Rajy62]

Last year a pilgrim ended her Camino because she made the decision to leave her CPAP at home and had a frightening experience...
Severe sleep apnea is related to heart trouble in addition to not getting enough sleep or suddenly and often stop breathing outright. My comment said "consider" the permanent solution....

Saramago, I completely agree with the gist of your statement. The original thread raised concerns as to carrying the cpap on the camino. I am afraid we are getting into various treatment options....The mouth piece or surgery seems to help some people but not others. SO, we can agree there is no single treatment option here. But cpap is very commonly used.

If i don't get that deep sleep, i can't function. I wonder weather some of the people with apnea not carrying the cpap really have that severe condition. My sleep test gave an apnea index above 30, there is no question but to always use the machine. I trust the machine more than my doctors.

In terms of having links between apnea and other underlying chronic condition, here is an interesting stat:

 

[Saramago]

Saramago, I completely agree with the gist of your statement. The original thread raised concerns as to carrying the cpap on the camino. I am afraid we are getting into various treatment options....The mouth piece or surgery seems to help some people but not others. SO, we can agree there is no single treatment option here. But cpap is very commonly used.

If i don't get that deep sleep, i can't function. I wonder weather some of the people with apnea not carrying the cpap really have that severe condition. My sleep test gave an apnea index above 30, there is no question but to always use the machine. I trust the machine more than my doctors.

In terms of having links between apnea and other underlying chronic condition, here is an interesting stat:

Interesting that I'm supposed to be defending or supply info to a forum member who hasn't had a proper sleep study or consulted a specialist even when I mentioned surgery isn't for everyone. Also, the quality and outcome of any surgery is directly influenced by the quality of the physician. Ours happen to be successful, my husband ran 7 companies, had a sore throat for a couple days and back to work. That we had an outstanding top doctor in the USA who has been presented to the Queen of England at St James Palace for his world renowned work has been our great fortune.

 

[Nancy P.]

Wouldn't you know it, I left a message with my dentist to find out about a mouth piece he could make for me so I woudn't have to drag a CPAP machine with me.

There are many causes for apnea, so no answer willl be a match. I just want to be well enoug on Camino without needing electric power.

I have used a mouth piece. It doesn't work as well as the CPAP does. I used it on my last Camino, but I will carry my new Transcend Auto Travel CPAP Machine with EZEX which only weighs a little over 1 pound including the charger on my next one. I sleep much better.

 

[Rajy62]

I have used a mouth piece. It doesn't work as well as the CPAP does. I used it on my last Camino, but I will carry my new Transcend Auto Travel CPAP Machine with EZEX which only weighs a little over 1 pound including the charger on my next one. I sleep much better.

How do you find breathing through that portable device without a humidifier. When my cpap runs out of water, i don't like the feeling of breathing dry air. That is what holding me back from getting those lighter devices.

 

[Harington]

When I was a hospitalière on the Voie de Vézelay we had a pilgrim with one of these machines. Everyone understood and shifted beds round so he could sleep by the power outlet. Most dormitories have them by the beds. And - as has been said - you won't miss out on conviviality; a lot of pilgrims sleep in private accommodation. Just sorry you've got to carry all the paraphernalia!

Mind you, as I remember, it didn't actually stop him snoring!

 

[C clearly]

True, i should put the blame more on the doctors than our medicare system.

Maybe there is no reason to "blame" anyone!

 

[dougfitz]

Mind you, as I remember, it didn't actually stop him snoring!

If a CPAP machine is not stopping someone with sleep apnoea from snoring, it indicates a problem such as the pressure setting being set too low or the mask not sealing correctly. It would be good to let the person know this is happening if you feel comfortable enough to raise the issue with them.

 

[Kathy F.]

Melensdad,
I don't know anything about the different types of machines needed to treat sleep apnea.
I do, however, know about how important it is to get a good night's sleep while on the Camino.
If your doctor advises you to use a machine, then, for heaven's sake, use a machine.
Your original question was partly about whether or not sleeping in a private room will diminish your experience on the Camino. In my opinion, the answer is a clear NO. The camaraderie you hope to experience actually happens mostly when people are awake (LOL), not when they are sleeping. As you suspect, most interaction occurs outside of the bunk beds. Pilgrims gather where they gather, and the location of your bed should not be a factor.
Having a private room will give you peace of mind. You will get a good night's sleep because of it. Then do it.
Your fellow pilgrims will/should not hold that against you. No one really keeps track of who sleeps where on the Camino, anyway.
Unless you snore. In that case, we know exactly who and where you are.
I'm looking at you, fat baldy guy with the blue backpack, the gray socks, and the blue and black sleeping bag who would rub stinky ointment on his feet before going to sleep in the albergue in Puenta de la Reina May, 2013.
Ugh.
Kathy

 

[Arn]

I have had three sleep studies in the last two tears. 1. Recommended. CPAP machine. When this didn't provide relief, 2. I was fitted with s mouth piece.
No indication of snoring, but a pronounced RLS in only my left leg.
So far none of the studies recorded any remarkable snoring.
We are all s bit different. One size truly does not fit all.

 

[dougfitz]

I have shared our own personal experience of our own case and the particular surgery recommended to us for our own case by a Harvard/Yale physician and our 13 year success rate.

@Saramago, I apologize for mistaking your posts for general advice. I am also pleased that your particular experience with laser assisted surgury has been satisfactory. However, in sharing your experience you have asserted that the procedure is safe, as you did in the original post and again here, where you also suggested that we might have been relying on outdated information in a most colourful way:

Whether or not anyone there are older threads, growing barnacles for lack of fresh information, is not relevant in that there are newer, safe and, yes, permanent methods of treatment.

At this point, I was prepared to believe that I might have been one of those people growing barnacles, but when I started searching, I not only found quite a lot of evidence that LAUP was not a recommended treatment for OSA, but even when used to treat snoring, it could have quite serious consequences to the patient. In general, it would appear, the procedure in not a safe treatment for OSA sufferers.

Given your earlier suggestion that you were privy to more current information, it seemed reasonable that you might have been able to share that with us, which you haven't done yet. Instead, you suggest this:

Interesting that I'm supposed to be defending or supply info to a forum member who hasn't had a proper sleep study or consulted a specialist even when I mentioned surgery isn't for everyone.

So let me be clear that I don't really care whether or not you provide information that would prove I am wrong, although I hope you still might. You can make your own assessment of how that will be interpreted either way. Nor do I particularly care who your surgeon visits on his holidays. What I do care about is that for those of us who suffer from OSA and its life threatening effects, holding out what appears to be false hope that LAUP offers a permanent, safe solution is irresponsible.

 

[CaminoDebrita]

This has been a very helpful discussion, and with the best of intentions, and with everyone's happiness in mind, shall we retire to the parlor for a drink?

Arn, thanks for weighing in. I think I need a mouthpiece too, although with my currently shrinking form, I will probably breathe easier at night. I have allergies, especially to dust and mold, and I think that most albuerges are going to have all sorts of that stuff. Could be wrong.

Now on to that bourbon with maraschino cherries...

 

[pudgypilgrim]

I have allergies, especially to dust and mold

One of the best things you can do for that is to bring something of your own to use as a pillow, even your poncho or a stuff sack full of clothes. And if you are losing weight (good for you!), that also helps enormously with allergies, usually.

 

[Harington]

If a CPAP machine is not stopping someone with sleep apnoea from snoring, it indicates a problem such as the pressure setting being set too low or the mask not sealing correctly. It would be good to let the person know this is happening if you feel comfortable enough to raise the issue with them.

Well, yes, but in that - as I said - I was a hospitalière at the time, and the man concerned was a pilgrim, I am very unlikely ever to have the opportunity. Should I ever meet another CPAP user who still snores I shall be forewarned.

 

[Anemone del Camino]

How do you find breathing through that portable device without a humidifier. When my cpap runs out of water, i don't like the feeling of breathing dry air. That is what holding me back from getting those lighter devices.

Excellent question. During the summer I do not mind not having the humidifier, but in winter, if I forget to refil it, I will pull my mask (pillow) off in the middle of the night.

 

[dougfitz]

Well, yes, but in that - as I said - I was a hospitalière at the time, and the man concerned was a pilgrim, I am very unlikely ever to have the opportunity. Should I ever meet another CPAP user who still snores I shall be forewarned.

I understand that in the rush of the morning in an albergue that it wouldn't have been the highest priority conversation! That said, most of us walk as pilgrims, and might have more opportunity to raise the matter if we see the person during the course of the day. It might be a difficult conversation to start with a CPAP user who is still snoring, but it is important that they know.

 

[Anemone del Camino]

I understand that in the rush of the morning in an albergue that it wouldn't have been the highest priority conversation! That said, most of us walk as pilgrims, and might have more opportunity to raise the matter if we see the person during the course of the day. It might be a difficult conversation to start with a CPAP user who is still snoring, but it is important that they know.

I learned I had sleep apnea by sharing a hotel room with a friend whose mother also suffers from it. She recognised the irregular breathing and asked if I suffered from sleep apnea. Got home, had the in-lab sleeping test and now I'm attached to a machine at night. On the Camino all people did was complain about my snoring, never noting the irregularity of breath.

 

[dongraf]

OK so we got thrown for a loop. My doctor has confirmed that I have very severe sleep apnea and he says that I am 'dying' many times each night. He says I should NOT sleep wihtout a CPAP machine. I am NOT severely overweight, reasonably fit, 6' and weigh 200#, so the severe apnea will not be reduced/cured by weight loss.

I have found a couple of portable CPAP machines, but they require elctricity and/or battery. Batteries need to be charged for SEVERAL HOURS to last for 8 hours of sleep. And just a battery can cost several hundred dollars.

My concerns:

• I will not be able to actually charge the battery
• I will need to sleep next to an electric outlet
• I will not be able to find an electric outlet in the sleeping areas at the vast majority of the Albergues
• I will end up in small hotels/inns so that I can use a CPAP machine which will limit my Camino experinces

So, if I do end up sleeping most nights in small inns or local hotels so that I can get a bed with an electric outlet, how much of the socialization of the Camino will I miss out on? Or is there ample social interaction outside of the Albergue routine?

 

[dongraf]

I have been a CPAP user for more than 10 years. On my first Camino walk (fm Sarria), I found electrical outlets in every place we stayed, including a couple of Albergue. This year I'll be walking the route from St Jean Pied de Port, so I share your concern about the availability of electrical outlets. I recently purchased a Transcend CPAP machine. It weighs less than a pound and has a multivoltage and multi prong power supply--easily used in various countries with differing voltages and plug configurations. I also purchased the model 8 battery (another pound!). I have tried the Transcend at home and find that it works well for me, and the battery provides sufficient power for one or two nights. I plan to use in on "house" current when available, concurrently charging the battery as I sleep, and use the battery when necessary. I'll post to this site during my walk, starting 7 May. As a note, I have no financial or other interest in the Transcend CPAP machine. It just seems to work for me as a lightweight solution for the Camino.

 

[Rajy62]

I have been a CPAP user for more than 10 years. On my first Camino walk (fm Sarria), I found electrical outlets in every place we stayed, including a couple of Albergue. This year I'll be walking the route from St Jean Pied de Port, so I share your concern about the availability of electrical outlets. I recently purchased a Transcend CPAP machine. It weighs less than a pound and has a multivoltage and multi prong power supply--easily used in various countries with differing voltages and plug configurations. I also purchased the model 8 battery (another pound!). I have tried the Transcend at home and find that it works well for me, and the battery provides sufficient power for one or two nights. I plan to use in on "house" current when available, concurrently charging the battery as I sleep, and use the battery when necessary. I'll post to this site during my walk, starting 7 May. As a note, I have no financial or other interest in the Transcend CPAP machine. It just seems to work for me as a lightweight solution for the Camino.

I used my cpap on CF and Norte without baterry. Never faced an issue with outlets.

 

[Albertagirl]

This has been a very helpful discussion, and with the best of intentions, and with everyone's happiness in mind, shall we retire to the parlor for a drink?

Arn, thanks for weighing in. I think I need a mouthpiece too, although with my currently shrinking form, I will probably breathe easier at night. I have allergies, especially to dust and mold, and I think that most albuerges are going to have all sorts of that stuff. Could be wrong.

Now on to that bourbon with maraschino cherries...

Hi, Deb. I too have allergies, more specifically to dust and feathers. I will have to leave behind my lightweight down sleeping bags for the camino, as I can only sleep in down for ten days or so. However, I have discovered over the years that I tend to get a really good night's sleep if dosed on sleep inducing antihistamines. I use chlorpheniramine maleate. You might try an antihistamine that works for you and just enjoy your sleep. I hope that I won't be getting too intimate in the albergues with pilgrims enjoying their lightweight and cosy down sleeping gear. It can get hard to breathe at night when one's allergies act up. Good luck

 

[CaminoDebrita]

Hi, Deb. I too have allergies, more specifically to dust and feathers. I will have to leave behind my lightweight down sleeping bags for the camino, as I can only sleep in down for ten days or so. However, I have discovered over the years that I tend to get a really good night's sleep if dosed on sleep inducing antihistamines. I use chlorpheniramine maleate. You might try an antihistamine that works for you and just enjoy your sleep. I hope that I won't be getting too intimate in the albergues with pilgrims enjoying their lightweight and cosy down sleeping gear. It can get hard to breathe at night when one's allergies act up. Good luck

Thank you for the kind note! I had completely forgotten that I am also allergic to feather, which does include down! I use allergy medications daily to keep the sneezing and sniffling at bay, and I'm quite sure that using it also helps me with the asthma. I will be traveling with some inhalers and medications for "just in case," and although I won't be loading up my pack with heavy things I might need, "might needs" when it comes to breathing shall not be left behind!

I control my allergies and asthma well, and am fortunate to have a fairly mild case of both. Thanks again!

 

[Melensdad]

I have been a CPAP user for more than 10 years. On my first Camino walk (fm Sarria), I found electrical outlets in every place we stayed, including a couple of Albergue. This year I'll be walking the route from St Jean Pied de Port, so I share your concern about the availability of electrical outlets. I recently purchased a Transcend CPAP machine. It weighs less than a pound and has a multivoltage and multi prong power supply--easily used in various countries with differing voltages and plug configurations. I also purchased the model 8 battery (another pound!). I have tried the Transcend at home and find that it works well for me, and the battery provides sufficient power for one or two nights. I plan to use in on "house" current when available, concurrently charging the battery as I sleep, and use the battery when necessary. I'll post to this site during my walk, starting 7 May. As a note, I have no financial or other interest in the Transcend CPAP machine. It just seems to work for me as a lightweight solution for the Camino.

I found 2 compact CPAPs that look very promising for travel -- we travel quite bit and seem to hike on travel frequently so this is becoming a larger concern for me as I look at various trips we have on our bucket list.

The Transcend unit is one of the 2 that I found. I liked the "international" plug set up that comes standard with the unit. My only concern is lack of humidification. I know there is an add on humidifier, but that is NOT desireable for travel. Does it offer one of those sponge humidity control things (no clue what they are callled) that helps maintain a modest level of humidity or does it have any other system that is travel/backpack friendly?

Looking at this model Transcend => https://www.sleepdirect.com/travel-cpap/transcend-travel-cpap-machine-with-ezex

And this model from HDM => https://www.sleepdirect.com/travel-cpap/hdm-z1-travel-cpap-machine-with-z-breathe

Not necessairly from this supplier, just found a couple links and used them.

 

[Anemone del Camino]

Spoke to my dentist today about having a mouth peice made for my apnea. Not as good as the CPAP, but better than nothing I suppose. Surprise, surprise, he told me that there was a meeting recently of dentists and "sleep doctors" in which it was agreed that only specialised dentists should be making these mouthpieces. The reasoning is that they require solid technical knowledge (vs just molding a mouth piece for braces or grinding) to ensure the jaw alignment is not damaged. So he will not be making these anymore, letting a handful of specialists take over this part of the practice. He recommended I speak to my "sleep doctor" (pneumologist in my case) to get the names of those in the know.

 

[Melensdad]

My understanding is that the mouthpieces are only effective for people who have mild cases of apnea. If that is the case for you then it would probably be a nice way to cut snoring while on the Camino. The other pilgrims will thank you

 

[Anemone del Camino]

My understanding is that the mouthpieces are only effective for people who have mild cases of apnea. If that is the case for you then it would probably be a nice way to cut snoring while on the Camino. The other pilgrims will thank you

I figured if it cut my number of incidents from 21 to 10, and only snore 33% of the time vs 72% it would be a win!