Advice needed, severe osa
Question:
On Sat, 06 Mar 1999 16:26:58 GMT, n…@scalby.freeserve.co.uk (Tony Polson) wrote: >Has any one received so much as a reply from Wayne, let alone a polite >’thank you’? I also sent an email but have had no reply to that either.
I distinctly remember seeing a message. Sometimes, USENET (and even E-mail) messages disappear into a black hole and reappear mysteriously days later. One time, I saw a message that I didn’t get for two weeks later. It went from AOL to Southwestern Bell by way of one of the Eastern European countries. — IMPORTANT: Remove the edible part of the E-mail address before replying.
Response:
Tony wrote… (snipped from a longer note) >Has any one received so much as a reply from Wayne, let alone a polite >’thank you’?
Yep! I got both… just a busy guy. More than appreciative. On a personal note Tony, on more than one occasion you have helped me a great deal. When I was still so sick I am not sure I properly thanked you…please know my appreciation is quite present. 
~~ pattie
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Gosh, I am sorry, I am not Wayne, but I forget to say thanks directly to those of you that have helped!!! You have my thanks, and now I can’t name all the people cause when I did before I left out names. But your help is appeciated and I used our web site for the AWAKE groups cause I was emailed for the location of the one near me, so thanks again!!! – Hide quoted text — Show quoted text -Tony Polson wrote: > Has any one received so much as a reply from Wayne, let alone a polite > ‘thank you’? I also sent an email but have had no reply to that either. > I begin to wonder why we make so much effort to help people on this > newsgroup when it just vanishes into a black hole. No reaction, no > response. No manners. > — > Tony Polson, North Yorkshire, UK
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Please see my separate post titled "Thank you". I am truly appreciative of all the replies and advice. I am new to this news group thing and thought it would be better to post a "thank you" message individually. I assumed everyone is able to see all messages on the board. Sounds like that is not the case, so I am posting in this thread as well. As I mentioned in the previous post, I went to the doctor yesterday and returned home with a gel mask, heated humidifier, nasal spray and a pressure change from 10 to 7. So I will try this set up and see how it works. Because of the knowledge from this ng I was much more informed when talking to the doc. I will try and participate as much as I can in this news group, however due to my work schedule I usually have to wait until the weekend to "play computer". So there may be some delay in my replies/posts. Thanks to all of you who have taken the time to reply to my original post, It has been very helpful and I hope to lick this sleep thing and start feeling better. Wayne – Hide quoted text — Show quoted text -Tony Polson wrote in message <36e150b2.3787…@news.freeserve.co.uk>… >Has any one received so much as a reply from Wayne, let alone a polite >’thank you’? I also sent an email but have had no reply to that either. >I begin to wonder why we make so much effort to help people on this >newsgroup when it just vanishes into a black hole. No reaction, no >response. No manners. >– >Tony Polson, North Yorkshire, UK
Response:
Tony Polson wondered: > Has any one received so much as a reply from Wayne, > let alone a polite ‘thank you’? I also sent an email but > have had no reply to that either. > I begin to wonder why we make so much effort to help > people on this newsgroup when it just vanishes into a > black hole. No reaction, no response. No manners.
I’ve not received anything either, but I’ld say wayne is more of an exception than the rule. At least 50% of folks asking questions post or email their thanks to the newsgroup. And it’s for those folks, who try to learn, that I keep on trying. ’Cause it just might help save someone from serious problems. Maybe even give them their lives back. Though the "thanks" help, seeing someone reclaim their life at work and with family is a huge reward in itself. But it sure is frustrating, isn’t it! Regards, =jbf= John B. Fisher
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Tony, This appeared on my news server about 12 hrs before your post: Just wanted to thank everyone for the great response to my post "Advice needed, severe osa". This group is terrific! Please excuse the delay in my responding to all of your posts. I usually only have a chance to post messages when the weekend arrives. I have taken all the advice to heart and went to back to my doctor today. I returned home with a heated humidifier and new gel mask. Tomorrow I pick up my prescription for nasal spray (steroid type I think). Finally, the doctor wants the pressure turned down from 10 to 7. So, I will try this set up and see how it works. I really appreciated everybody taking to time to reply. You folks are awesome. The response was overwhelming and very supportive. I hope to participate on a regular basis in this group and share my experiences as well. One thing is for sure, I am committed to licking this thing. Life is way to fun to go through it at half speed. I still have a whole lot of living to do, for myself and my family. Thanks so much! I will keep you posted. Wayne On Sat, 06 Mar 1999 16:26:58 GMT, n…@scalby.freeserve.co.uk (Tony Polson) wrote: >Has any one received so much as a reply from Wayne, let alone a polite >’thank you’? I also sent an email but have had no reply to that either. >I begin to wonder why we make so much effort to help people on this >newsgroup when it just vanishes into a black hole. No reaction, no >response. No manners.
regards, eric pearson er…@nospammindspring.com
Response:
On Sat, 6 Mar 1999 22:35:14 -0800, in alt.support.sleep-disorder "Wayne" <wr…@gte.net> wrote: >Please see my separate post titled "Thank you". I am truly appreciative of >all the replies and advice. I am new to this news group thing and thought it >would be better to post a "thank you" message individually. I assumed >everyone is able to see all messages on the board. Sounds like that is not >the case, so I am posting in this thread as well.
Wayne, I was pleased (and relieved) to hear your message, and that the advice several of us gave was of some help. I apologise for my tetchy posting. Advice is not always available, because we don’t know everything about sleep disorders and we’re (mostly) not medics. But support is always available. I hope you’ll ask away in future. When you’re not feeling great, which is often the case for some of us, it’s a joy to know that your thoughts and non-expert advice are of some use to others. I get a real kick out of knowing I’ve helped someone, and it puts my own struggle with OSA more in perspective. Please keep in touch. — Tony Polson, North Yorkshire, UK
Response:
On Sat, 06 Mar 1999 16:26:58 GMT, n…@scalby.freeserve.co.uk (Tony Polson) wrote: >I begin to wonder why we make so much effort to help people on this >newsgroup when it just vanishes into a black hole. No reaction, no >response. No manners.
Well, they may have put on their CPAP and they’re sleeping for three or four days straight to make up for their lack of decent sleep. — IMPORTANT: Remove the edible part of the E-mail address before replying.
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snipped from Markmywd’s note… >I’m almost embarassed to say it was a thrill to read your post Wayne, >and the follow up posts, especially Tony Polson’s, John Fisher’s and , >well, all of them. I’m not happy you all had to go through what you’ve >gone through, but I am thrilled to find out that a whole series of >what I thought were unrelated symptoms all lead back to this one cause
Mike, I can completely relate to what you are saying. I had such a list of symptoms which included: numbness/tingling in extremities, sleeplessness, nocturia, excessive drowsiness, headaches, vision blurred, pale skin, memory loss and more… when I found treatment for my apnea, and the support here, it felt for the first time in a long long time that I would get better. I wish only the best to you and look forward to reading about your venture forth. ~~ pattie
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Mike Hogan wrote: > After a farily tough decade or so, I’ve got a bit of a chill > running up and down my arms. Things are looking up! > And there are people you can talk to about this! > Amazing.
Yes, it helps – it helps a LOT to know that others understand. It gets very discouraging when you talk with doctors who dismiss some of these symptoms. Or only want to treat the symptoms – not try to figure out why the symptoms persist … night after night. – Hide quoted text — Show quoted text -> Here’s a poem I wrote one day lamenting the absence > of dreams. Maybe some of you will know the feeling. > Dream Catching > Each night I cast my net upon > The dark dominion without dawn. > I cast my net on ocean’s deep. > On ocean’s curl, my net is sleep. > I cast myself with blinded eye > And sometimes see, but mostly I > Am washed upon day’s bracing keep > And tangled lines are all I reap. > But now and then with ocean’s flight, > Occluded eyes are blessed with sight > And apparition’s quickly gleaned > In teeming net of sacred dreams.
Mike, this is wonderful! You are right. Most people take dreams for granted. When they go missing, it leaves a void that nothing can quite fill. Thanks for sharing this. Regards, =jbf= John B. Fisher
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On Wed, 03 Mar 1999 06:59:23 GMT, in alt.support.sleep-disorder ”’markm…@yahoo.com wrote: >I’m almost embarassed to say it was a thrill to read your post Wayne, >and the follow up posts, especially Tony Polson’s, John Fisher’s and , >well, all of them. I’m not happy you all had to go through what you’ve >gone through, but I am thrilled to find out that a whole series of >what I thought were unrelated symptoms all lead back to this one cause >(even the reflux). >After a farily tough decade or so, I’ve got a bit of a chill running >up and down my arms. Things are looking up! And there are people you >can talk to about this! >Amazing.
Thanks Mark! It’s been the experience of many on this newsgroup (myself included) that the advice on here is of much more practical use than that from doctors, sleep technicians and DME suppliers. If they haven’t had obstructive sleep apnea they’ll never know what it’s like. It makes it exceptionally difficult for medics to understand why we have problems with xPAP kit etc. and what can and should be done to work around them. You should still be cautious about any advice you receive. None of us are health professionals. You should *always* take advice from one before making any *significant* change to your treatment. Good luck! — Tony Polson, North Yorkshire, UK
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Impatrice wrote in message <19990303215754.13615.00002…@ng-fx1.aol.com>… >You know, it wasn’t until I reread this post that I realized/remembered that >one of my primary symptoms of severe OSA had been the complete loss of my >dreams.
Pattie, Sorry my love but I have sleep apnea as severe as it can be and still be here to talk about it (This according to a sleep tech who thought it a rgeat joke and later confirmed by a very annoyed sleep specialist) and I gotta tellya that not only do I ALWAYS dream but a lot of my dreams are much like being in a Holodeck from Star Trek. >Thank you both for reminding me. Mike, as a side note… it took a few weeks >(now that my memory has been jogged) before I started having dreams that I >remembered.
I try this method of practice which I actually developed for myself so I dont guarantee it will work with anybody else. Pick your favourite subject and while waiting to go to sleep, make up a story about it complete with pix, in your head. I am a big Sci-Fi nut and can easily make up different scenarios. While going to sleep the dreams become really vivid but dont last very long. As a result of that, I tend to remember my dreams when I wake up. Unless the dreams are like those in a Holodeck, I dont bother attempting to remember them though. Those ones are usually instructive like someone is trying to tell me something. Remove the anti-spammer stuff
Response:
Gregh had replied to me.. (snipped) >Sorry my love but I have sleep apnea as severe as it can be and still be >here to talk about it (This according to a sleep tech who thought it a rgeat >joke and later confirmed by a very annoyed sleep specialist) and I gotta >tellya that not only do I ALWAYS dream but a lot of my dreams are much like >being in a Holodeck from Star
No need to be sorry I have come to realize from the NG and other research that the symptoms of OSA are as varied as they are similar. What one has experienced, another has never heard of…sometimes we all can relate, someotimes none. The thread I had replied to had struck a not with me when I thought of dreams lost My OSA, just as a side note, was 70 apneas/hour, 20-40 seconds each, leaving me with 44% oxygen. I am as glad to hear you are recovering as I can be.. thanks for the input ~~ pattie
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I had similar problems adjusting to my cpap. Initially, it took me six months to adjust. After many disapointing sleepless nights, I switched from a mask to nasal pillows. I found them to be less "confining" and more comfortable. Upon making the switch, I found it to be much more bearable in my initial stages with the cpap. Recently I have switched to the mirage mask which has also worked for me. I guess the bottom line is that it is up to the individual and that you need to keep trying different things until you find what works for you…….ASAP! Good Luck & Sleep Well, Frank
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Has any one received so much as a reply from Wayne, let alone a polite ‘thank you’? I also sent an email but have had no reply to that either. I begin to wonder why we make so much effort to help people on this newsgroup when it just vanishes into a black hole. No reaction, no response. No manners. — Tony Polson, North Yorkshire, UK
Response:
Mike wrote and John quoted: > Here’s a poem I wrote one day lamenting the absence – Hide quoted text — Show quoted text ->> of dreams. Maybe some of you will know the feeling. >> Dream Catching >> Each night I cast my net upon >> The dark dominion without dawn. >> I cast my net on ocean’s deep. >> On ocean’s curl, my net is sleep. >> I cast myself with blinded eye >> And sometimes see, but mostly I >> Am washed upon day’s bracing keep >> And tangled lines are all I reap. >> But now and then with ocean’s flight, >> Occluded eyes are blessed with sight >> And apparition’s quickly gleaned >> In teeming net of sacred dreams. >Mike, this is wonderful! You are right. Most people take dreams for >granted. When they go missing, it leaves a void that nothing can quite >fill. Thanks for sharing this. >Regards, >=jbf= >John B. Fisher
You know, it wasn’t until I reread this post that I realized/remembered that one of my primary symptoms of severe OSA had been the complete loss of my dreams. Thank you both for reminding me. Mike, as a side note… it took a few weeks (now that my memory has been jogged) before I started having dreams that I remembered. ~~ pattie
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Tony Polson wrote: > and apologies to everyone for this long message …
Tony! Why on earth do you need to apologize? This is one of the finest responses I’ve ever seen! It’s great to see your intellect and generous nature at work again. It’s clear you are feeling more optimistic. We look forward to seeing how you are doing when you are really feeling better! Regards, =jbf= John B. Fisher
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Wayne <wr…@gte.net> wrote > I have recently discovered this ng and there is obviously a wealth of > experience here. I would like some advice to help me get adjusted to cpap. I > have recently been diagnosed with severe osa, second worse case the doctor > has seen so far (probably tells all his patients this).
Sounds just like me — my doc, just today, went over the results of my first sleep study. 140 episodes/hour, O2 @ 84%. – Hide quoted text — Show quoted text -> I have been trying to use the cpap for about 3 weeks now with very poor > results. One time I was able to get about 3 hours before removing the mask. > Most nights I just get frustrated with laying there awake not able to go to > sleep. Take the mask off usually after about 1-2 hours of trying. The mask > itself is not very comfortable, but my biggest problem is the constant air > pressure. I have been a mouth breather all my life and the air pressure when > I am trying to exhale drives me nuts. I find it difficult to inhale through > my nose (using Afrin to kept nose clear). I find it very difficult to exhale > with the constant air pressure. Feels like it takes allot of > effort/concentration to breath.
I arrived at the lab at 8 p.m., and as I was recovering from a mild cold, was taking Tavist-D. I’d last taken one that morning, 7-8 a.m., so I asked one of the sleep techs if I should take another. I was told to write down on the form that I took it, what dosage it was, the time… etc. The tech let me try the CPAP before I went to bed, so it wouldn’t be a shock to me, if they determined I was having a severe number (little did I know) of events, and decided to try the CPAP. Sure enough, after having slept only 90 minutes, they wanted to try the CPAP. I don’t know what make, model, features or pressure this machine was, but I felt much the same way. At first, my nose was clear, and it was just *odd* feeling — I was tolerating it, even getting used to it — but I lay awake for a good 30-45 mins. trying to get over the odd sensation. Once I fell asleep, I would only occasionally wake at the very clipped beginning of a snore. After an hour or so of really nice sleep, one nostril became blocked with congestion, and at that point, I felt as if I could not exhale quickly enough against the pressure. After trying for several waking minutes to figure out how to overcome the increasing discomfort, I basically panicked, and ripped the thing off my face. :) Oh, too bad — not long enough for titration, so I get to come back here, huh? At any rate, this was almost two weeks ago. I’ve since discovered that my OSA is improved if I sit straight-up in a chair or on the sofa, with a firm pillow under the point of my chin. If not the OSA, certainly the quality of rest! The CPAP: I took some info today about one of the "smart" CPAP units to my doc… he said he had no dealings with them, but was interested. He paused the consultation to call the HHA and my insurance folks, and he prescribed the Respironics Virtuoso for a trial, 6cm/min., 12cm/max. He agreed with me that it made more sense to try a bit of "hit-or-miss" with this unit before scheduling another $1700 sleep study. I’m hoping this unit will "be gentle with me," as I realize non-compliance is a huge problem with CPAP treatment. — little DEUCE "Dare not goose the DEUCE, lest ye pull back a stump."
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On Mon, 1 Mar 1999 00:31:12 -0800, "Wayne" <wr…@gte.net> wrote: >I have recently discovered this ng and there is obviously a wealth of >experience here.
I’m 48 and just had my sleep apnea diagnosed. After 18 years of deteriorating health, I’m looking forward with great anticipation to getting a CPAP machine later this month. I’m almost embarassed to say it was a thrill to read your post Wayne, and the follow up posts, especially Tony Polson’s, John Fisher’s and , well, all of them. I’m not happy you all had to go through what you’ve gone through, but I am thrilled to find out that a whole series of what I thought were unrelated symptoms all lead back to this one cause (even the reflux). After a farily tough decade or so, I’ve got a bit of a chill running up and down my arms. Things are looking up! And there are people you can talk to about this! Amazing. Thank you very much. PS Here’s a poem I wrote one day lamenting the absence of dreams. Maybe some of you will know the feeling. Dream Catching Each night I cast my net upon The dark dominion without dawn. I cast my net on ocean’s deep. On ocean’s curl, my net is sleep. I cast myself with blinded eye And sometimes see, but mostly I Am washed upon day’s bracing keep And tangled lines are all I reap. But now and then with ocean’s flight, Occluded eyes are blessed with sight And apparition’s quickly gleaned In teeming net of sacred dreams. Mike Hogan
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I have to rush off to work so I cant spend the time I’d like to answer this but if you are interested I have a site that tells my story…it is quite similar to your. A setting of 10 is not too high and cpap is the preferred treatment. If you can find any way to get used to it that is the route to go. However, if you can’t tolerate it at all then there are other surgical options. Check out my site … it also has a page for spouses as this problem often affects spouse dramtically too and they need info and supprt too. = = = = = For information regarding Tracheostomy and the treatment of Obstructive Sleep Apnea please visit http://members.aol.com/citylinc/osa/index.htm = = = = = A great sleep forum http://www.sleepedu.net/forums/apnea/apneainf.html
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On Mon, 1 Mar 1999 00:31:12 -0800, in alt.support.sleep-disorder "Wayne" <wr…@gte.net> wrote: >I have recently discovered this ng and there is obviously a wealth of >experience here. I would like some advice to help me get adjusted to cpap. I >have recently been diagnosed with severe osa, second worse case the doctor >has seen so far (probably tells all his patients this). Actually asked me if >he could use my results/charts as examples for new patients during their >first consultation. > Anyway, here is my setup. Respironics cpap set at 10, pass over non >heated humidifier, Mirage mask, heating pad under humidifier, adjustable bed >(also have reflux, adjustable bed helps with this).
So far, so good, except the unheated humidifier. I tried CPAP without a humidifier and had similar problems to yours. I made my own unheated humidifier because my physician would not prescribe one for me – he said humidifiers were "more trouble than they were worth" which is IMHO 100% crap. I changed physician and the new one was astonished that I had not been prescribed a heated humidifier. I was given one immediately and I can tell you the difference was *amazing*. A heating pad is of very little help as it cannot approach the (higher) correct temperature range as provided by a purpose designed electric hotplate model such as a Fisher-Paykel. The correct temperature is important because research has shown that it kills bacteria in the humidification chamber. 10cm H2O is not a particularly high pressure. Most people here are on 7-12cm. I think anything over 12cm would justify the term "high". I am on 18cm H2O and there are several posters to the newsgroup who are in the 15-18cm range. If your pressure was over 12cm it might be worth trying a bi-levelPAP which would give you a lower pressure when exhaling. > I have been trying to use the cpap for about 3 weeks now with very poor >results. One time I was able to get about 3 hours before removing the mask. >Most nights I just get frustrated with laying there awake not able to go to >sleep. Take the mask off usually after about 1-2 hours of trying. The mask >itself is not very comfortable, but my biggest problem is the constant air >pressure. I have been a mouth breather all my life and the air pressure when >I am trying to exhale drives me nuts. I find it difficult to inhale through >my nose (using Afrin to kept nose clear). I find it very difficult to exhale >with the constant air pressure. Feels like it takes allot of >effort/concentration to breath.
Like you, I found adapting to breathing through my nose very difficult. Initially I was prescribed an ipatropium bromide nasal spray which helped a little. But when I could not get an appointment with my experienced local GP, I saw a young, newly qualified addition at the GP practise who recommended a mild steroid spray which made a *huge* difference. It still does, three years later. The heated humidifier (used in conjunction with the nasal spray) made an even bigger difference. If Afrin is, as I suspect, an over-the counter nasal spray, it is definitely not the right thing to use. Long term use of over-the counter nasal sprays causes ‘rebound’ which only makes the problem worse. Only a prescription spray, such as Beconase or Flonase, will work. This alone may be the cause of your problem. There is a good chance you may have obstructions or constrictions in your nasal passages which prevent you from getting the best out of your CPAP. You need to be able to breathe freely through your nose. If the nasal spray and heated humidifier do not achieve this, ask your GP for a referral to an ENT surgeon who will hopefully offer you a septoplasty (operation to cure a deviated or displaced septum) and/or reduction of your nasal turbinates – these are fleshy masses in your sinuses which warm and humidify the air you breathe, and they can get large enough to restrict the flow of air. These are relatively minor operations which are regularly carried out. They are reliable and effective procedures with a very high success rate. I had one (septoplasty AND reduction of nasal turbinates) a year before getting my CPAP. Without having had the operation I would not have had any use for a CPAP as my nasal breathing was severely restricted. > The cpap has a ramp feature on it which I continually have to use >through the night.
Pointless, I’m afraid. All it means is that you’re getting a pressure that’s too low to help alleviate your apnea until the ramp has ended. >I realize that this is going to take time to conquer.
In many cases, yes, it will. But it’s worth conquering. >I have had osa for as long as I can remember, at least from 14 years >ago when I got married and my partner pointed it out to me.
I have probably had apnea for 20 years or more (I’m 44) and have had a CPAP for three and a half years now. It has never once given me the "miracle cure" that is occasionally so unhelpfully reported on this newsgroup. But it has helped keep me alive for three years. Some patients will get a "miracle cure" at the start of CPAP treatment, some will find it somewhere along the line. Some will find a long term improvement which brings the "miracle", just more gradually. A "miracle cure" helps a patient to comply with the xPAP and, importantly, it also helps give the strength and determination necessary to overcome the many possible glitches that are found with nightly use of xPAP machines and accessories. Conversely, if you have no signs of relief in the early days, it is all too easy to give up altogether. In my case, nearly four years on I’m still waiting while the medics find out precisely what is causing my obstruction and how it can be dealt with. My first sleep doc was a hospital physician who had virtually no previous experience of sleep disorders. He was worse than useless. The second sleep doc was a highly respected sleep specialist at one of the largest teaching hospitals in London, England. Whilst he was infinitely more competent than the first sleep doc, and spent a lot of time trying to get CPAP to work for me, neither made any real attempt to establish the cause and site of my apneas. They bolted on a CPAP and were mystified when it did very little for me. Finally, having been given early retirement on health grounds (i.e. fired) from my job as a Civil Servant in London, we moved to rural Yorkshire and I was referred to a specialist respiratory unit in the region. Here, and only here, has my problem been seriously addressed. The sleep doc (young yet very experienced – having specialised early in sleep disorders – plus extremely keen and determined to find the cause of obstruction) referred me first to a maxillo-facial surgeon and then to an ENT surgeon. The M-F surgeon painstakingly investigated my airway with an endoscope and then with a cephalometric X-ray and found the site of my obstruction was almost certainly my soft palate. This is long, thick and floppy and gives a complete obstruction when I exhale – it is very unusual for a sleep apnea patient to obstruct on EXhalation. I have now been referred to an ENT, whom I will see on March 8. He will evaluate whether palatal surgery might help. It rarely helps apneics but then my condition (obstruction when I exhale) is also very rare. I am grateful for the excellent, painstaking investigation I am receiving and hope that a successful treatment can be applied to solve, or at least better alleviate the problem. It is such a sharp contrast to the other two sleep docs who took no notice of my repeated assertion that obstruction on exhalation was the problem. My own experience, and the knowledge I have gained from this newsgroup as well as from attending conferences and reading peer reviewed research papers, abstracts and articles from medical publications all around the world, has taught me that CPAP is not the right treatment for everyone. It can help a very large proportion of apneics recover from their syndrome and it is rightly the treatment of choice at the moment. But IMHO it does not, and never will, merit the term "gold standard treatment" that is so often applied. Many people reject CPAP out of hand, perhaps because of claustrophobia, discomfort or revulsion at its appearance. Of those remaining, the compliance rate (those actually using the machine for 5 or more hours per night) appears to be little better than 50%. How can this be a "gold standard"? Surveys relying on replies from patients have shown higher compliance rates than 50%, but those relying on xPAP machines which secretly record actual use by the patient show much lower rates. One study showed a compliance rate of about 70% based on patient replies. The data downloaded from the machines showed 44%. The patients lied. This is not surprising when you realise that the patient’s continuing employment (and possibly his/her medical insurance) may depend on an undertaking to use xPAP for a minimum number of hours per night. For example, the Driver and Vehicle Licensing Agency (DVLA) in the UK insist on more than 4 hours xPAP use per night for apneics who drive heavy goods vehicles (trucks) or public service vehicles (buses and coaches)., Otherwise an apneic’s driver’s license is withdrawn. At a sleep apnea conference I heard a number of drivers discussing whether it was safe to leave their xPAP machines running in another room to clock up the necessary hours without having to wear that damn mask! If the xPAP was truly a "gold standard treatment", low xPAP compliance would not be the serious issue it is today. IMHO the root cause of low compliance is poor or non-existent patient support and follow-up in the days and weeks after starting CPAP treatment. I find it unforgivable that patients are so often handed a CPAP and mask and then left alone to try to make it all work. – Hide quoted text — Show quoted text -> I just lived with it all these years, but the last 2 years I have
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I have recently discovered this ng and there is obviously a wealth of experience here. I would like some advice to help me get adjusted to cpap. I have recently been diagnosed with severe osa, second worse case the doctor has seen so far (probably tells all his patients this). Actually asked me if he could use my results/charts as examples for new patients during their first consultation. Anyway, here is my setup. Respironics cpap set at 10, pass over non heated humidifier, Mirage mask, heating pad under humidifier, adjustable bed (also have reflux, adjustable bed helps with this). I have been trying to use the cpap for about 3 weeks now with very poor results. One time I was able to get about 3 hours before removing the mask. Most nights I just get frustrated with laying there awake not able to go to sleep. Take the mask off usually after about 1-2 hours of trying. The mask itself is not very comfortable, but my biggest problem is the constant air pressure. I have been a mouth breather all my life and the air pressure when I am trying to exhale drives me nuts. I find it difficult to inhale through my nose (using Afrin to kept nose clear). I find it very difficult to exhale with the constant air pressure. Feels like it takes allot of effort/concentration to breath. The cpap has a ramp feature on it which I continually have to use through the night. I realize that this is going to take time to conquer. I have had osa for as long as I can remember, at least from 14 years ago when I got married and my partner pointed it out to me. I just lived with it all these years, but the last 2 years I have been going down hill rapidly. I have high blood pressure, high cholesterol, 70lbs. overweight and acid reflux. I am well aware that the extra weight is at the root cause of many of these issues and am working on that through diet and exercise. I suspect that being able to get some real sleep at night would help as well. I have very little energy anymore and find it difficult to concentrate during conversations and when trying to solve problems. Most disturbing is I feel like my personality is changing. I am usually a very positive and outgoing person. I also feel like I am cheating my 8 year old son with not having the energy to spend much time with him. Between working allot of overtime and a busy 8 year old, I feel totally exhausted all the time. Quite honestly I feel like I am slowly dieing. Running out of life energy if you will. Sorry about the long message and the wining but wanted to give some background. If you have read this far – thank you and any advice is much appreciated.
Response:
On Mon, 1 Mar 1999 00:31:12 -0800, "Wayne" <wr…@gte.net> wrote: >Mirage mask >Take the mask off usually after about 1-2 hours of trying. The mask >itself is not very comfortable
You’re likely clamping it down too hard. It’s a bit counterintuitive at first, but the seal around the edge needs to "balloon out" with the air pressure. >I have been a mouth breather all my life and the air pressure when >I am trying to exhale drives me nuts. I find it difficult to inhale through >my nose (using Afrin to kept nose clear). I find it very difficult to exhale >with the constant air pressure.
1) You also have some nose problems, as you probably know. 2) Your doctor should consider putting you on topical steroid nasal spray. >Feels like it takes allot of effort/concentration to breath.
It’s kind of weird at first but relax. > I just lived with it all these years, but the last 2 years I have been >going down hill rapidly. I have high blood pressure, high cholesterol, >70lbs. overweight and acid reflux. I am well aware that the extra weight is >at the root cause of many of these issues and am working on that through >diet and exercise.
Sleep apnea doesn’t help most of them, either. >I suspect that being able to get some real sleep at night >would help as well. I have very little energy anymore and find it difficult >to concentrate during conversations and when trying to solve problems
Sleep apnea can do that, too. — IMPORTANT: Remove the edible part of the E-mail address before replying.
Response:
Wayne wrote: > I have recently discovered this ng and there is obviously > a wealth of experience here.
Welcome to the newsgroup, Wayne! You are right about experience. There is a great deal of experience, but most of us are not medical professionals. So, you find that we provide our input based on our own experience, and that of others in the newsgroup. However, the other thing you’ll find here is a great deal of understanding of the problems you face, as well as folks who care a great deal about you. That understanding and caring can make a real difference. > Anyway, here is my setup. Respironics cpap set at 10, > pass over non heated humidifier, Mirage mask, heating > pad under humidifier, adjustable bed (also have reflux, > adjustable bed helps with this).
By the way, reflux can be triggered by obstructive sleep apnea. The vacuum that builds as you try to breathe inspite of the obstruction can pull gastric fuilds back into the esophagus. Reflux is often an indication of obstructive sleep apnea. > I have been trying to use the cpap for about 3 weeks now > with very poor results. One time I was able to get about 3 > hours before removing the mask. Most nights I just get > frustrated with laying there awake not able to go to sleep. > Take the mask off usually after about 1-2 hours of trying. > The mask itself is not very comfortable, but my biggest > problem is the constant air pressure. I have been a mouth > breather all my life and the air pressure when I am trying to > exhale drives me nuts. I find it difficult to inhale through > my nose (using Afrin to kept nose clear). I find it very difficult > to exhale with the constant air pressure. Feels like it takes > allot of effort/concentration to breathe.
Hmm… Where to start? Believe it or not, your experience is much more ‘normal’ than most of the healthcare industry wants to admit. However, you will find that it’s possible to overcome some of these problems. Now for some tips… First, do not use Afrin anymore. Period. You have used it far too long if you’ve used it regularly during the three weeks. You see, after a while, your nasal passages adjust to the Afrin. They even start to *require* the Afrin. (This is true for all OTC nasal decongestants that are not steroid based). Unfortunately you will have several days of congestion until your body readjusts. Instead of Afrin, use a saline spray. This helps keep your nasal membranes moist and helps reduce some of the problems. Also switch to a steroid based nasal decongestant. These do not result in this ‘rebound’ effect. I believe one is available OTC, but some are available only via prescription. See your doctor about this. It’s very important to get this under control. Being a mouth breather is not unusual for someone with obstructive sleep apnea. In fact it seems to contribute to some of the problems adjusting to CPAP. It’s not as much about the pressure through the nose, as it is about changing habits developed over many years. In fact, I’m willing to wager that when you use the nasal mask, and nod off, you wake up with air coming out your mouth. If you don’t recognize that, then the dry mouth is a certain give away. Why do I think this is an issue? It is an issue for just about everyone of us! So, what can be done about it? Well, you can try a chin strap. But something that seems to be getting good reviews at the moment is to try to use medical tape to tape closed your mouth. Obviously don’t do this until you can breathe through your nose! Use http://www.dejanews.com/ to scan through recent posts about this. You might also want to see an ENT (after you are off Afrin for a week!). Anything an ENT can do to help you breathe through your nose will help you use CPAP, which relies on nasal breathing. If the mask is uncomfortable, you probably have it too tight. This one of the most difficult lessons to learn, because it is so counterintuitive. But the best way to start is to put your mask on, while laying down! This will allow you to adjust the mask to the way you will sleep. Turn on your CPAP, then keep it as loose as possible without any leaks. It’s a balancing act that takes time to learn how it best works for you. > The cpap has a ramp feature on it which I continually > have to use through the night.
Believe it or not, in just six months if you hang in there, you’ll be so adapted to using CPAP that you’ll need the pressure to fall asleep! It happens. > I realize that this is going to take time to conquer. I have > had osa for as long as I can remember, at least from 14 > years ago when I got married and my partner pointed it > out to me.
You’re not alone. Many of us have had it since teen years. Myself included. My sister used to complain about my snoring and stopping breathing. I now understand what it can do… > I just lived with it all these years, but the last 2 years I have > been going down hill rapidly.
Most of us do, not realizing how dangerous it can be … > I have high blood pressure, high cholesterol, 70lbs. overweight > and acid reflux.
OSA contributes to high blood pressure. You see, when you obstruct, your body continues to attempt to breathe. To compensate for the decreased oxygen available, your heart start to work harder. It’s not unusual for someone with OSA to have a high diastolic pressure (the second of the two). This indicates the blood pressure from your heart to your lungs has increased over time to compensate for this. But our cardiovascular systems are complex and interconnected. Place a strain on one area, and the rest is also strained. > I am well aware that the extra weight is at the root cause > of many of these issues and am working on that through > diet and exercise.
Actually, I’ld counter that OSA may well be a root cause for gaining weight. Unfortunately it’s a viscious cycle. With OSA you don’t have as much energy to burn off those calories. And OSA gets worse with time. As it gets worse, you gain weight, which also makes OSA worse. And so forth… But you are right that reducingyour weight will help you tremendously. > I suspect that being able to get some real sleep at night > would help as well.
YES. Lack of sleep in and of itself will increase your blood pressure. It is a stress on your body. The consequences can literally be fatal. > I have very little energy anymore and find it difficult to > concentrate during conversations and when trying to > solve problems.
Again, OSA causes sleep deprivation, which causes this. > Most disturbing is I feel like my personality is changing. > I am usually a very positive and outgoing person.
Why do you think sleep deprivation is used as a torture? It places severe and insurmountable stresses on the body. This impacts you physically, mentally, and even spiritually. Only sleep will help you restore yourself to you. > I also feel like I am cheating my 8 year old son with not > having the energy to spend much time with him. Between > working allot of overtime and a busy 8 year old, I feel totally > exhausted all the time.
You are not alone in this… > Quite honestly I feel like I am slowly dieing. Running out of > life energy if you will.
It’s good that you realize this, and are taking steps to work against this killer. You are not too late. You can improve your life dramatically. Do not dispair. > Sorry about the long message and the wining but wanted > to give some background. If you have read this far – thank > you and any advice is much appreciated.
You are not whining. Remember that very few other people you will meet truly UNDERSTAND how you feel. And it’s important to share the load. You’ll find lots of other folks here, who will help encourage you. I’m going to offer a few more prize nuggets of ideas… Perhaps some will help you adjust. First of all, CPAP is not the only answer. If you continue to have problems with CPAP (Continuous Positive Airway Pressure), you might want to ask your doctor about a BiPAP unit. Such a unit provides two levels (Bi-Level) of pressure. When you inhale, and the need for increased pressure to splint open the airway is greatest, the unit provides greater pressure. This is the inspiratory pressure. When you exhale (when it can cause the greatest discomfort), the pressure is reduced. This is the expiratory pressure. Another option is to use an Auto-Titrating CPAP unit. These units adjust to your specific needs. They sense when you obstruct, and increase the pressure to spint open your airway. If you continue to breathe smoothly, they slowly decrease the pressure. This allows to you to have exactly the correct amount of pressure you require. Why are these not tried upfront? Because they cost quite a bit more money than the CPAP units. Insurance often requires that you attempt to use CPAP and fail before they will find the more expensive units. Hmmm…. I’ve obviously rambled on here for a bit. Sorry this got so long, but I *really* understand. My son is 10. And I worry that I won’t live to see him reach high school. (It’s not been a good weekend.) Please keep the faith, and draw courage from those here in this newsgroup. You are very important to your family and others (including those of us in this newsgroup). Regards, =jbf= John B. Fisher
