Thinking of giving up CPAP
Question:
Tom Devlin <tomdev…@ameritech.net> wrote in message <news:b4hoiukcm1qn8k1histmap5tqu93fl654s@4ax.com>… > chris…@btinternet.com (chrissie) wrote: > It wasn’t clear that your asthma predated your CPAP, and I’m outraged > that they’d give a passive humidifier to someone with a history of > respiratory problems. This is one of those "why take a chance?" > situations, where common sense should have prevailed.
I’m pretty outraged too. When I first saw the consultant, I specifically asked him about CPAP and asthma, and whether I needed a heated humidiefier. He said no, that there was no connection between CPAP and ashtma. What makes it worse is that I’m a severe asthmatic and also have a bronchiectasis – which makes me very vulnerable to chest infections. Indeed , I am on long term maintance antibiotics. I gave all this information to the consultant at the sleep clinic. I also gave him the name of my asthma consultant. I have now lost all confidence in the sleep clinic. The sleep apnoea clearly does need treating – but the asthma will always always have to take precedence. That is, I can’t be on any treatment for the sleep apnoea that makes the asthma worse – simply because if it’s worse then I am dead. I am meant to go back for a follow-up sleep study. At the moment, I just can’t face it. > The problem is that your weight gain has probably increased your > pressure requirement, probably the reason that you’re no longer waking > up refreshed.
But how do I regain any confidence in them? > Just concentrate on remembering how great you felt after going on > CPAP. CPAP didn’t cause your asthma, I don’t know if the passive > humidifier made it worse, but I’m convinced that it’s your ticket to a > speedier recovery.
Not sure what you mean by a passive humidifier – what I started on was CPAP with no humidiciation at all, heated or otherwise. > Which blower are you using? Someone here will certainly know the > answer.
I have the Remstar Plus. I have contacted the UK importers and they have explained about chaging the filters and I have bought some spare filters from them so that I can change them as soon as they need to be changed. Regards Chrissie
Response:
Go to this website and ask them to send you some sample filters….. these are super fine filters that will filter out all kinds of nasties that other filters won’t catch. They’re in australia but i’m sure they’ll send you some samples anyway. http://www.jonbirdmedical.com.au/SpiroFilter.htm — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles "chrissie" <chris…@btinternet.com> wrote in message
news:bddac50e.0207081418.1ba99833@posting.google.com… – Hide quoted text — Show quoted text -> I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > started to get ill. I have now been on antibiotics and oral steroids > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > of weight; and feel that I will never feel well again. > Is it time to give up? > Regards > Chrissie
Response:
chris…@btinternet.com (chrissie) wrote: >> It wasn’t clear that your asthma predated your CPAP, and I’m outraged >> that they’d give a passive humidifier to someone with a history of >> respiratory problems. This is one of those "why take a chance?" >> situations, where common sense should have prevailed. >I’m pretty outraged too. When I first saw the consultant, I >specifically asked him about CPAP and asthma, and whether I needed a >heated humidiefier. He said no, that there was no connection between >CPAP and ashtma.
Had you asked your asthma specialist before seeing the sleep people? >I have now lost all confidence in the sleep clinic. The sleep apnoea >clearly does need treating – but the asthma will always always have to >take precedence. That is, I can’t be on any treatment for the sleep >apnoea that makes the asthma worse – simply because if it’s worse then >I am dead.
I’m certainly no expert in these matters, but it seems like you now have everything you need to use CPAP successfully. I’d talk to your asthma specialist, and see what he/she has to say about the subject, but your body _does_ require proper sleep. >> The problem is that your weight gain has probably increased your >> pressure requirement, probably the reason that you’re no longer waking >> up refreshed. >But how do I regain any confidence in them?
Is there another sleep center you could go to? Failing that, I’m sure that the original center wouldn’t have a problem with you bringing in your own heated humidifier, and I’m sure they’d have the fine filters available. >Not sure what you mean by a passive humidifier – what I started on was >CPAP with no humidiciation at all, heated or otherwise.
Oh Lordy, many of us have to start with passive (unheated) humidifiers, but I think almost everybody gets some form of humidification. 
But you do seem to finally have the proper equipment, please stick with CPAP. Tom
Response:
chrissie <chris…@btinternet.com> wrote: > The first few nights on CPAP were fantastic…woke feeling incredible. > Then started to get tight-chested especially in the mornings after > turning the machine off.
I had some tight-chested feelings when first on CPAP, soreness in the chest. Due to breathing out aginst the CPAP pressure. Took a few weeks to get used to. Could this be part of it? > The bottom line is………I have been a lot, lot iller with asthma > since starting on the CPAP. One theory is that it’s because they put > me on unhumidified CPAP – 8 hours a night of cold air challenge > straight into the lungs – but I’ve had a humifidifier for nearly two > weeks now and I am still ill.
You may need to increase the humidification. Be aware that doing so means more condensation. TO counter the condensation problems, buy or sew an insulated cover for the hose from the humidifier to mask. > The aftercare has been disappointing. The GPs say they know nothing > about CPAP. The sleep clinic don’t really handle anything that is off > their script and just say there is no connection between the two. > My ashtma specialist is of the view that I should never have been > given CPAP without a heated humifidifier..the trouble is…even with > one…I am still not getting better. So now I’m wondering if I am > ever going to get well while I’m on the CPAP.
Yes you will get better. CPAP with the heated humidifer is a Godsend! It will take time to get better. Stick with it. That incredible feeling in the mornings will come back. Ross Bernheim
Response:
chris…@btinternet.com (chrissie) wrote: >The humidifier is heated…by the time I worked out that the cold, >unhumidified CPAP was making me so ill I insisted they gave me a >heater/humidifier….although it was an uphill struggle since they >maintained the asthma had nothing to do with the CPAP ( a rather >commom view - including amonst the contributers to this list).
It wasn’t clear that your asthma predated your CPAP, and I’m outraged that they’d give a passive humidifier to someone with a history of respiratory problems. This is one of those "why take a chance?" situations, where common sense should have prevailed. >I guess the reason I am questioning going on with the CPAP is that I >wonder if my lungs just need a complete rest from it. Perhaps I >should stop using it until I am completely better asthma- and >infection- wise, and then start all over again but with the >heater/humidifier.
Lacking decent medical guidance, you’re going to have to make your own decision. My feeling is that you need CPAP more when you’re ill, the deep sleep will help your body recover and throw off the infection. The problem is that your weight gain has probably increased your pressure requirement, probably the reason that you’re no longer waking up refreshed. I really think you ought to pursue this with your sleep center, they may not understand asthma, but they know about pressure requirements and weight gain. > I certainly feel there is quite apsycholical >hurdle for me to get over the feel OK about the CPAP now.
Just concentrate on remembering how great you felt after going on CPAP. CPAP didn’t cause your asthma, I don’t know if the passive humidifier made it worse, but I’m convinced that it’s your ticket to a speedier recovery. >I am also concerned that the sleep clinic gave me on advice on >changing/cleaner filters. I am going to try talking to the UK >importer today to see if they can give me any advice on this.
Which blower are you using? Someone here will certainly know the answer. Tom
Response:
NormC <no…@socal.rr.com> wrote in message <news:3D2B8DF7.E50BF831@socal.rr.com>… > Now, perahps, we’re getting somewhere. You only said "humidifier". I hope you > accidently left off the word "heated". If you don’t have a heated humidifier, I can > well understand your problem. I’ve had chronic bronchitis for 20+ years and adult > onset asthma for 2 or 3.
The humidifier is heated…by the time I worked out that the cold, unhumidified CPAP was making me so ill I insisted they gave me a heater/humidifier….although it was an uphill struggle since they maintained the asthma had nothing to do with the CPAP ( a rather commom view - including amonst the contributers to this list). > When I went in for titration, the first blast of air, while calibrating, started me > coughing…. bad. Even happens to me outside on a cool windy day or in a hot car > when the air condtioning is blowing into my nose. > The tech said, "Oh, we can fix that."
Lucky you. I guess I have substantially lost confidence in the sleep clinic I am attending. And, somehow, she did, very quickly. I knew > right then I had to have heated air. Didn’t matter if it was humid or not. I > could not tolerate cold air being forced into my lungs. > So do you have a heated humidifier, or not?
I think the problem I have now is that my lungs are in such an irritated and infected state that I am just not getting better. The asthma is still quite a big problem despite being on oral steroids. This is very bad news – I am getting lots of side-effects from the steroids, and it simply isn’t viable to stay on them. I guess the reason I am questioning going on with the CPAP is that I wonder if my lungs just need a complete rest from it. Perhaps I should stop using it until I am completely better asthma- and infection- wise, and then start all over again but with the heater/humidifier. I certainly feel there is quite apsycholical hurdle for me to get over the feel OK about the CPAP now. I am also concerned that the sleep clinic gave me on advice on changing/cleaner filters. I am going to try talking to the UK importer today to see if they can give me any advice on this. Best wishes Chrissie
Response:
- Hide quoted text — Show quoted text -chrissie wrote: > I don’t have my sleep study results – my GP didn’t give them to me. I > know that the diagnosis was "moderately severe sleep apnoea" and that > the baseline oxygen saturation was 90% going down to 73% on quite a > number of occasions. > The asthma precedes the CPAP treatment. It is difficult to control at > the best of times – I am on high dose of preventers and average 6 > short courses of oral steroids a year. I am also on maintenance > antibiotics because of problems with iinfections. > The first few nights on CPAP were fantastic…woke feeling incredible. > Then started to get tight-chested especially in the mornings after > turning the machine off. > Since then the saga has gone on and on. No, I haven’t been on the > same antibiotics. Had one type….still ill…then another…..then > the hospital added in a third as well as the second. Came to end end > of type 2 antibiotic – seemed better – 3 days later was coughing badly > and was put back on them. > The weight gain is steroid bloat and it is specatacular. Despite > being on antibiotics and steroids, the asthma and chest infection was > bad enough to have me admitted to hospital for a night – xrays showed > very clearly there was an infection. > The bottom line is………I have been a lot, lot iller with asthma > since starting on the CPAP. One theory is that it’s because they put > me on unhumidified CPAP – 8 hours a night of cold air challenge > straight into the lungs – but I’ve had a humifidifier for nearly two > weeks now and I am still ill. > The aftercare has been disappointing. The GPs say they know nothing > about CPAP. The sleep clinic don’t really handle anything that is off > their script and just say there is no connection between the two. > My ashtma specialist is of the view that I should never have been > given CPAP without a heated humifidifier..the trouble is…even with > one…I am still not getting better. So now I’m wondering if I am > ever going to get well while I’m on the CPAP. > Best wishes > Chrissie > NormC <no…@socal.rr.com> wrote in message <news:3D2A303E.A7F96013@socal.rr.com>… > > chrissie wrote: > > > I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > > > started to get ill. I have now been on antibiotics and oral steroids > > > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > > > of weight; and feel that I will never feel well again. > > > Is it time to give up? > > > Regards > > > Chrissie > > No. I’ve had pretty much had similar problems for 18 months. > > For me to be of any help, you’d have to post, or repost, all the info that is > > normally asked for on this NG: sleep test details, before and after data, how you > > get along with your mask, whether your pressure settings have ever been changed, or > > for that matter, checked, details about the doctor(s) you are seeing, any other > > illnesses, any meds, etc. etc. etc. > > With regard to your antibiotics, did your doc give you the same antibiotic for the > > whole 5 weeks? It’s my inderstanding that the particular antibiotic should be > > changed with each prescription. > > A few months ago I had the worst bronchial asthma attack I’ve ever had. First time > > I’ve ever had to have two rounds of antibiotics. They were not the same. > > HTH
Chrissie…… in other messages, I’ve mentioned the antibiotics. Long term use should be avoided as it will have many negative side affects. What are you on antibiotics for. If it is for any kind of internal infections, there are other means of treatment. A healthy human body can ward off all minor infections. If it can’t it isn’t healthy. Make it healthy and no need for antibiotics. Consider the use of blueberries (the most potent natural antibiotic in the world). Also known by the old English name of bilberry or bilbury. One cup of blueberries a day will get rid of many infections and also add all manner of nutrients to the body to increase its’ health. You can get blueberry/bilberry extract in capsules at the drug store (OTC) as well. As for your coughing, this is a common side effect of many antibiotics, blood pressure meds and heart meds. Are they treating a real problem or a side effect of drug medication that can be corrected with a change in meds. You should get a copy of your sleep test as you can find out here what it all means. Most doctors don’t know what most of it means and the sleep specialists usually don’t communicate well. Remember, it is your health and you must take care of it and use the medical professionals for guidance. Do NOT implicitly trust the professionals. They are human, they are overworked, and medical information is changing so fast that they have trouble keeping up with it. I have major asthma and allergies and carry an Epipen for emergencies and at one time had supplemental oxygen at home. Now with CPAP, my problems in those areas have been reduced by about two thirds. Mind you, I use the fine filters on the CPAP, and have three levels of high quality are filtration at home. It has been over a year since I used my Epipen (I used to use it about once a month) and I brought on that attack myself. I had gone downtown (polluted) and spent several hours shopping. Was walking back to my car and started a major attack. A police car stopped at the light and I got his attention, told him my problem, had him pull into a parking lot, told him I was going to inject myself and that he had to stay with me for 15 minutes. He was rather shocked when I downed my pants to inject myself in the thigh!. Are you on inhalers? If they are the pump type, are you aware that many people are allergic to the preservatives in the drugs? They have inhalers where you take a large capsule (sealed in a little pouch), insert the capsule in a plastic inhaler, it punctures the capsule in two places and you inhale the dry powdered drug, sans the preservatives. Look into all of this but keep on your CPAP. Regards Lee in Toronto Regards Lee in Toronto —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–
Response:
- Hide quoted text — Show quoted text -chrissie wrote: > I don’t have my sleep study results – my GP didn’t give them to me. I > know that the diagnosis was "moderately severe sleep apnoea" and that > the baseline oxygen saturation was 90% going down to 73% on quite a > number of occasions. > The asthma precedes the CPAP treatment. It is difficult to control at > the best of times – I am on high dose of preventers and average 6 > short courses of oral steroids a year. I am also on maintenance > antibiotics because of problems with iinfections. > The first few nights on CPAP were fantastic…woke feeling incredible. > Then started to get tight-chested especially in the mornings after > turning the machine off. > Since then the saga has gone on and on. No, I haven’t been on the > same antibiotics. Had one type….still ill…then another…..then > the hospital added in a third as well as the second. Came to end end > of type 2 antibiotic – seemed better – 3 days later was coughing badly > and was put back on them. > The weight gain is steroid bloat and it is specatacular. Despite > being on antibiotics and steroids, the asthma and chest infection was > bad enough to have me admitted to hospital for a night – xrays showed > very clearly there was an infection. > The bottom line is………I have been a lot, lot iller with asthma > since starting on the CPAP. One theory is that it’s because they put > me on unhumidified CPAP – 8 hours a night of cold air challenge > straight into the lungs – but I’ve had a humifidifier for nearly two > weeks now and I am still ill.
Now, perahps, we’re getting somewhere. You only said "humidifier". I hope you accidently left off the word "heated". If you don’t have a heated humidifier, I can well understand your problem. I’ve had chronic bronchitis for 20+ years and adult onset asthma for 2 or 3. When I went in for titration, the first blast of air, while calibrating, started me coughing…. bad. Even happens to me outside on a cool windy day or in a hot car when the air condtioning is blowing into my nose. The tech said, "Oh, we can fix that." And, somehow, she did, very quickly. I knew right then I had to have heated air. Didn’t matter if it was humid or not. I could not tolerate cold air being forced into my lungs. So do you have a heated humidifier, or not? – Hide quoted text — Show quoted text -> The aftercare has been disappointing. The GPs say they know nothing > about CPAP. The sleep clinic don’t really handle anything that is off > their script and just say there is no connection between the two. > My ashtma specialist is of the view that I should never have been > given CPAP without a heated humifidifier..the trouble is…even with > one…I am still not getting better. So now I’m wondering if I am > ever going to get well while I’m on the CPAP. > Best wishes > Chrissie > NormC <no…@socal.rr.com> wrote in message <news:3D2A303E.A7F96013@socal.rr.com>… > > chrissie wrote: > > > I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > > > started to get ill. I have now been on antibiotics and oral steroids > > > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > > > of weight; and feel that I will never feel well again. > > > Is it time to give up? > > > Regards > > > Chrissie > > No. I’ve had pretty much had similar problems for 18 months. > > For me to be of any help, you’d have to post, or repost, all the info that is > > normally asked for on this NG: sleep test details, before and after data, how you > > get along with your mask, whether your pressure settings have ever been changed, or > > for that matter, checked, details about the doctor(s) you are seeing, any other > > illnesses, any meds, etc. etc. etc. > > With regard to your antibiotics, did your doc give you the same antibiotic for the > > whole 5 weeks? It’s my inderstanding that the particular antibiotic should be > > changed with each prescription. > > A few months ago I had the worst bronchial asthma attack I’ve ever had. First time > > I’ve ever had to have two rounds of antibiotics. They were not the same. > > HTH
Response:
I don’t have my sleep study results – my GP didn’t give them to me. I know that the diagnosis was "moderately severe sleep apnoea" and that the baseline oxygen saturation was 90% going down to 73% on quite a number of occasions. The asthma precedes the CPAP treatment. It is difficult to control at the best of times – I am on high dose of preventers and average 6 short courses of oral steroids a year. I am also on maintenance antibiotics because of problems with iinfections. The first few nights on CPAP were fantastic…woke feeling incredible. Then started to get tight-chested especially in the mornings after turning the machine off. Since then the saga has gone on and on. No, I haven’t been on the same antibiotics. Had one type….still ill…then another…..then the hospital added in a third as well as the second. Came to end end of type 2 antibiotic – seemed better – 3 days later was coughing badly and was put back on them. The weight gain is steroid bloat and it is specatacular. Despite being on antibiotics and steroids, the asthma and chest infection was bad enough to have me admitted to hospital for a night – xrays showed very clearly there was an infection. The bottom line is………I have been a lot, lot iller with asthma since starting on the CPAP. One theory is that it’s because they put me on unhumidified CPAP – 8 hours a night of cold air challenge straight into the lungs – but I’ve had a humifidifier for nearly two weeks now and I am still ill. The aftercare has been disappointing. The GPs say they know nothing about CPAP. The sleep clinic don’t really handle anything that is off their script and just say there is no connection between the two. My ashtma specialist is of the view that I should never have been given CPAP without a heated humifidifier..the trouble is…even with one…I am still not getting better. So now I’m wondering if I am ever going to get well while I’m on the CPAP. Best wishes Chrissie – Hide quoted text — Show quoted text -NormC <no…@socal.rr.com> wrote in message <news:3D2A303E.A7F96013@socal.rr.com>… > chrissie wrote: > > I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > > started to get ill. I have now been on antibiotics and oral steroids > > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > > of weight; and feel that I will never feel well again. > > Is it time to give up? > > Regards > > Chrissie > No. I’ve had pretty much had similar problems for 18 months. > For me to be of any help, you’d have to post, or repost, all the info that is > normally asked for on this NG: sleep test details, before and after data, how you > get along with your mask, whether your pressure settings have ever been changed, or > for that matter, checked, details about the doctor(s) you are seeing, any other > illnesses, any meds, etc. etc. etc. > With regard to your antibiotics, did your doc give you the same antibiotic for the > whole 5 weeks? It’s my inderstanding that the particular antibiotic should be > changed with each prescription. > A few months ago I had the worst bronchial asthma attack I’ve ever had. First time > I’ve ever had to have two rounds of antibiotics. They were not the same. > HTH
Response:
chris…@btinternet.com (chrissie) wrote: >I’ve been on CPAP now for 6 weeks. Initially it was great..but then I >started to get ill. I have now been on antibiotics and oral steroids >(for asthma) for 5 of those 6 weeks; have put on an incredible amount >of weight; and feel that I will never feel well again.
I doubt there’s any connection between your CPAP and asthma, but the weight gain can make your CPAP less effective. Talk to your sleep doctor if you feel that CPAP’s no longer doing the job, you might need a slight pressure boost. >Is it time to give up?
Of course not, you’ve hardly gotten started. Tom
Response:
chrissie wrote: > I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > started to get ill. I have now been on antibiotics and oral steroids > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > of weight; and feel that I will never feel well again. > Is it time to give up? > Regards > Chrissie
No. I’ve had pretty much had similar problems for 18 months. For me to be of any help, you’d have to post, or repost, all the info that is normally asked for on this NG: sleep test details, before and after data, how you get along with your mask, whether your pressure settings have ever been changed, or for that matter, checked, details about the doctor(s) you are seeing, any other illnesses, any meds, etc. etc. etc. With regard to your antibiotics, did your doc give you the same antibiotic for the whole 5 weeks? It’s my inderstanding that the particular antibiotic should be changed with each prescription. A few months ago I had the worst bronchial asthma attack I’ve ever had. First time I’ve ever had to have two rounds of antibiotics. They were not the same. HTH
Response:
DO NOT GIVE UP. The CPAP did not cause the illness. If you have put on weight due to the meds, ask your sleep doc if a pressure increase is appropriate. regards, eric pearson db2e…@nospammindspring.com On 8 Jul 2002 15:18:48 -0700, chris…@btinternet.com (chrissie) wrote: – Hide quoted text — Show quoted text ->I’ve been on CPAP now for 6 weeks. Initially it was great..but then I >started to get ill. I have now been on antibiotics and oral steroids >(for asthma) for 5 of those 6 weeks; have put on an incredible amount >of weight; and feel that I will never feel well again. >Is it time to give up? >Regards >Chrissie
Response:
I’ve been on CPAP now for 6 weeks. Initially it was great..but then I started to get ill. I have now been on antibiotics and oral steroids (for asthma) for 5 of those 6 weeks; have put on an incredible amount of weight; and feel that I will never feel well again. Is it time to give up? Regards Chrissie
Response:
chrissie wrote: > I’ve been on CPAP now for 6 weeks. Initially it was great..but then I > started to get ill. I have now been on antibiotics and oral steroids > (for asthma) for 5 of those 6 weeks; have put on an incredible amount > of weight; and feel that I will never feel well again. > Is it time to give up? > Regards > Chrissie
Chrissie…… no, it is time to deal with each problem. Have you talked to your doctor about this? Why are you on antibiotics? And why for so long? As for the asthma, there are a host of medications for asthma and it is a trial and error thing to find the right one. I have severe OSA and severe asthma and allergies. I wouldn’t be alive today without CPAP, and once I finally got used to it (three months), my asthma and allergies subsided by about two thirds. Is the weight gain actual weight or water? Both anitbiotics and asthma meds can cause water retention. Let us know some more information and you will get lots of help here. Regards Lee in Toronto —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–
