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How many years did you have the sleep apnea without a CPAP machine? Another month would be fatal?
I have had a CPAP for years. I don't take it on caminos; I just try to sleep on my side.
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?
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?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.
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.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?
Great that is just few hours drive for me. I will dig deeper.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.
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.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.
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.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.
Agree with Doug that the solution would depend on its severity and causation and vary from person to person.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.
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.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?
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?
Have you tested the effectiveness of that mouthpiece?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.
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.Have you tested the effectiveness of that mouthpiece?
@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.'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.
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.@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.
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.I've found 2 different compact/travel machines
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!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.
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.@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.
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!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?
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: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.
You have a sore throat for several days as the only side effect.
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!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?
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!!!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.
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.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.
True, i should put the blame more on the doctors than our medicare system.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!
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....
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.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:
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.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.
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.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.
Mind you, as I remember, it didn't actually stop him snoring!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!
Maybe there is no reason to "blame" anyone!True, i should put the blame more on the doctors than our medicare system.
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.Mind you, as I remember, it didn't actually stop him snoring!
@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: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.
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.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.
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.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.
I have allergies, especially to dust and mold
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.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.
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.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.
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.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 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.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.
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?
I used my cpap on CF and Norte without baterry. Never faced an issue with outlets.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.
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
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.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 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!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
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