Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Finally people who know what I am going through...pity all the rest dont...because it is not something that can be seen they think you are exagerating ...they dont see or hear first thing in the morning..hey? Hope everyone is keeping well...thank god for all of you.... Oh How true. I have trerrible problems with 's school a he seems fairly ok during the hours of 9-3 it is from 4 am till 7.30 and from 6pm till he finally gets to sleep that he is coughing and struggling and feelings so awful. Then of course he is tired and grumpy at school and they think he is just a miserable preteen. I am made to feel a liar when I tell them how bad he has been and that I am contacting the consultant about his chest. Even when he is admitted for IV's they think it is all in my head and I am exagerating. Like the consultant would admit him for IV's jsut cause I asked him too to make me look good! Of course I just love the inconvenience of having one child in hospital across the sea while we try to keep life even for the other three. Costing us pounds a day to get to see him etc. AAAgghh Love to all Tina Hillier from Isle of Wight UK Mum to , 12 years old and possesor of an Extra Special Chromosome. Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS) 5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating. And who is 4 years old and a very proud school girl now! http://uk.briefcase.yahoo.com/tdlhillier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Lee.........I hate morning times.........lol sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Hey Lee, I know how it feels. Everytime I get a sinus infection (usually sinusitis), I'll get a lung infection. I couldn't explain the connection in medical terms, but my pulmo doc and my ENT has always treated my lungs and sinuses at the same time. If not to prevent the infection from going deeper into my lungs, it's to treat it in my lungs and sinus. It's like how your eyes, ears, and nose are all connected and so your sinus (or is it sinuses? not good at grammer) and lungs are connected. Basically everything's connected but when it comes to sinus infections, the lungs are involved one way or another. It's pretty annoying, too. I sleep with a fan on, blowing at my face so it keeps my nose clear at night (or it gets stuffy). I wake up and my sinsuses have drained in my throat overnight. My Grandma has this problem so she carries lots of peppermints around whenever she gets the " tickles " . She's my source for relief whenever I get the tickles at her house, 'cause she's always got 'em. The other problem is losing your voice, 'cause you cough till your eyeballs just about pop out of your head and your throat has been stressed too much...but you gotta get it up and out somehow, right? We know you're not at exaggerating...it's just one of those things that we have to " put up with " . But the winter is approaching, so I can look forward to a runny nose, rather than a stuffy one. If I had to choose, it'd be the runny nose...that way I can still breathe, just have to carry tissues around. Oh, but then there's the chapped lips and nose from blowing so much. Thank God for aloe vera tissues!!! LOL. -Brittany > hi everyone, seems that sinus troubles and bronchiectasis may go > together doesnt it..I too have problems with sinus..feels like you > are drowning sometimes..It affects your swallowing too,that apart > from the coughing which makes you lose your voice..It is spring here > in oz and with all the pollen and very strong winds at present I dont > know whether to laugh or cry.Finally people who know what I am going > through...pity all the rest dont...because it is not something that > can be seen they think you are exagerating ...they dont see or hear > first thing in the morning..hey? Hope everyone is keeping > well...thank god for all of you.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi fellow sufferers and welcome to all new members seeking help, info, support etc This is basically my story. I am 58 and an ex smoker. Over the years I had bouts of bronchitis. About 5 years ago I got a dreadful dose of flu and sinusitis and due to pressure at work was unable to take time off. Before this I was someone who hardly ever blew my nose. All of a sudden my nose was literally running. I was getting nowhere with my GP and, after taking numerous doses of antibiotics, asked to be referred to a specialist. After various scans, he admitted me to hospital for 4 days and put me on IV antibiotics and steriods. The steroids made me shake. I really didn't get much better and still my nose was running. He referred me to an ENT specialist and I had surgery to enable better drainage and hopefully to get rid of the infection in my sinuses. That was about 4 years ago. I have never had any sinus pain touch wood. My nose doesn't actually run now however the infection and thick mucous production is constant and I go nowhere without a box of tissues by my side. The infection I have is pneumonie streptocochus (?) which I have read is very difficult to get rid of. My nose does drain better but the infection remains. I have been on amoxylin since February but the infection remains. (I agree with Brittany, thank God for Aloe Vera tissues!) I have a post nasal drip and catarrh (?) which of course drips down the back of my throat into my lungs - the thick mucous is always coloured. My respiratory specialist says this is where the lung infection comes from. Because of constant lung infections which have not cleared up I now have bronchiectasis. I have been on various antibiotics for a long period of time (5 years) and think I have probably become resistant to a lot of them. Have just finished a course of doxycyclin but the infection although a lot better than it was, remains. My constant cough sounds dreadful and is embarassing. Fortunately I am able to cough a lot of muck up and work in an environment where I am able to do so. I have been to a physiotherapist for cupping and drainage when I am really struggling and that seems to help. I did have Pink Disease as a small child and wonder about the bronchiectasis connection. My physician says there is none. I still wonder. My father died in August. I knew he had mild emphysema but was surprised to learn he had bronchiectasis. He didn't do too badly - he was 98! So take heart. Somebody mentioned salt with sinus . . how do you administer it? Do you mix it in water and drain it through your nostrils? Does it help/cure? I have only been a member of this group for a week or two but have learnt a lot. Thanks to you all. Happy huffing (??????) Elaine Re: sinus > Hey Lee, > > I know how it feels. Everytime I get a sinus infection (usually > sinusitis), I'll get a lung infection. I couldn't explain the > connection in medical terms, but my pulmo doc and my ENT has always > treated my lungs and sinuses at the same time. If not to prevent the > infection from going deeper into my lungs, it's to treat it in my > lungs and sinus. It's like how your eyes, ears, and nose are all > connected and so your sinus (or is it sinuses? not good at grammer) > and lungs are connected. Basically everything's connected but when it > comes to sinus infections, the lungs are involved one way or > another. It's pretty annoying, too. I sleep with a fan on, blowing > at my face so it keeps my nose clear at night (or it gets stuffy). I > wake up and my sinsuses have drained in my throat overnight. My > Grandma has this problem so she carries lots of peppermints around > whenever she gets the " tickles " . She's my source for relief whenever > I get the tickles at her house, 'cause she's always got 'em. > The other problem is losing your voice, 'cause you cough till your > eyeballs just about pop out of your head and your throat has been > stressed too much...but you gotta get it up and out somehow, right? > We know you're not at exaggerating...it's just one of those things > that we have to " put up with " . But the winter is approaching, so I > can look forward to a runny nose, rather than a stuffy one. If I had > to choose, it'd be the runny nose...that way I can still breathe, > just have to carry tissues around. Oh, but then there's the chapped > lips and nose from blowing so much. Thank God for aloe vera > tissues!!! LOL. > > -Brittany > > > > hi everyone, seems that sinus troubles and bronchiectasis may go > > together doesnt it..I too have problems with sinus..feels like you > > are drowning sometimes..It affects your swallowing too,that apart > > from the coughing which makes you lose your voice..It is spring > here > > in oz and with all the pollen and very strong winds at present I > dont > > know whether to laugh or cry.Finally people who know what I am > going > > through...pity all the rest dont...because it is not something that > > can be seen they think you are exagerating ...they dont see or hear > > first thing in the morning..hey? Hope everyone is keeping > > well...thank god for all of you.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi Elaine - I mentioned use of salt water. I first used it when I had hay fever as a child, my father taught me how to dissolve the salt in water, put in good size container & scoop up the water with my hands placed side by side and cupped, put my nose in the water and sniff the water. At first I thought I would drown but I finally figured it out. Today, however, it is much easier. You can buy the saline solution at the drug stores. I now use Walgreen brand. I tip my head back, squeeze bottle gently and let water run in & down to my throat and cough it out. If I am stuffed up I sniff it as it goes in and it seems to penetrate into the sinus cavity better and after a few times clears the passage. I would use distilled water today to mix myself as I do not trust the water supplies all that much. The link below (Nasal Saline) should take you to a web page for recipe (I have never used baking soda just the salt - if you do not want to use baking soda just leave it out when mixing) if the link does not work the web address is typed below it. If the lining of your nose tends to be dry and uncomfortable you can also use the saline mixture to spray. Hope this helps. Nasal Saline http://www.fpnotebook.com/ENT142.htm Nona star34baby@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I also have the drainage down the back of my throat......and it is always coloured.......I am constantly draining from my head....nose....ears......etc.......lol I feel like one big mucus plug...........:)sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Sondra- How do you deal with the drainage problem? Also, how do you distinguish that the colored drainage is from the sinus & not the lung? (sounds stupid I know but.....) Nona star34baby@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Welcome Elaine, the post nasal drip and catarrh are a real nuisance. My father has emphysema, he was told 26 years ago he had 12 months to live. He does alot of deep breathing which I think keeps him coping. When I started coughing all the gunk up I was scared that I had what dad had, the docs told me it wasnt which put my mind at ease but then the news bronchiectasis...having trouble breathing...ugh!.isnt that similar I thought???It can be very embarrassing alright and I sound like a cigar smoker evry morning. Thank god a bout of bronchitis made me throw away the cigs 13 years ago, where would I be now..Everything I have learnt about this disease I can thank the wonderful group....its wonderful to hear everyones stories..As for drying the sinuses have you tried sudafed?.....keep well..Lee Elaine Barker wrote: Hi fellow sufferers and welcome to all new members seeking help, info,support etcThis is basically my story. I am 58 and an ex smoker. Over the years I hadbouts of bronchitis. About 5 years ago I got a dreadful dose of flu andsinusitis and due to pressure at work was unable to take time off. Beforethis I was someone who hardly ever blew my nose. All of a sudden my nosewas literally running.I was getting nowhere with my GP and, after taking numerous doses ofantibiotics, asked to be referred to a specialist. After various scans, headmitted me to hospital for 4 days and put me on IV antibiotics andsteriods. The steroids made me shake. I really didn't get much better andstill my nose was running. He referred me to an ENT specialist and I hadsurgery to enable better drainage and hopefully to get rid of the infectionin my sinuses. That was about 4 years ago. I have never had any sinus paintouch wood.My nose doesn't actually run now however the infection and thick mucousproduction is constant and I go nowhere without a box of tissues by my side.The infection I have is pneumonie streptocochus (?) which I have read isvery difficult to get rid of. My nose does drain better but the infectionremains. I have been on amoxylin since February but the infection remains.(I agree with Brittany, thank God for Aloe Vera tissues!)I have a post nasal drip and catarrh (?) which of course drips down the backof my throat into my lungs - the thick mucous is always coloured. Myrespiratory specialist says this is where the lung infection comes from.Because of constant lung infections which have not cleared up I now havebronchiectasis. I have been on various antibiotics for a long period oftime (5 years) and think I have probably become resistant to a lot of them.Have just finished a course of doxycyclin but the infection although a lotbetter than it was, remains.My constant cough sounds dreadful and is embarassing. Fortunately I am ableto cough a lot of muck up and work in an environment where I am able to doso. I have been to a physiotherapist for cupping and drainage when I amreally struggling and that seems to help.I did have Pink Disease as a small child and wonder about the bronchiectasisconnection. My physician says there is none. I still wonder.My father died in August. I knew he had mild emphysema but was surprised tolearn he had bronchiectasis. He didn't do too badly - he was 98! So takeheart.Somebody mentioned salt with sinus . . how do you administer it? Do you mixit in water and drain it through your nostrils? Does it help/cure?I have only been a member of this group for a week or two but have learnt alot. Thanks to you all.Happy huffing (??????)Elaine Re: sinus> Hey Lee,>> I know how it feels. Everytime I get a sinus infection (usually> sinusitis), I'll get a lung infection. I couldn't explain the> connection in medical terms, but my pulmo doc and my ENT has always> treated my lungs and sinuses at the same time. If not to prevent the> infection from going deeper into my lungs, it's to treat it in my> lungs and sinus. It's like how your eyes, ears, and nose are all> connected and so your sinus (or is it sinuses? not good at grammer)> and lungs are connected. Basically everything's connected but when it> comes to sinus infections, the lungs are involved one way or> another. It's pretty annoying, too. I sleep with a fan on, blowing> at my face so it keeps my nose clear at night (or it gets stuffy). I> wake up and my sinsuses have drained in my throat overnight. My> Grandma has this problem so she carries lots of peppermints around> whenever she gets the "tickles". She's my source for relief whenever> I get the tickles at her house, 'cause she's always got 'em.> The other problem is losing your voice, 'cause you cough till your> eyeballs just about pop out of your head and your throat has been> stressed too much...but you gotta get it up and out somehow, right? > We know you're not at exaggerating...it's just one of those things> that we have to "put up with". But the winter is approaching, so I> can look forward to a runny nose, rather than a stuffy one. If I had> to choose, it'd be the runny nose...that way I can still breathe,> just have to carry tissues around. Oh, but then there's the chapped> lips and nose from blowing so much. Thank God for aloe vera> tissues!!! LOL.>> -Brittany>> > > hi everyone, seems that sinus troubles and bronchiectasis may go> > together doesnt it..I too have problems with sinus..feels like you> > are drowning sometimes..It affects your swallowing too,that apart> > from the coughing which makes you lose your voice..It is spring> here> > in oz and with all the pollen and very strong winds at present I> dont> > know whether to laugh or cry.Finally people who know what I am> going> > through...pity all the rest dont...because it is not something that> > can be seen they think you are exagerating ...they dont see or hear> > first thing in the morning..hey? Hope everyone is keeping> > well...thank god for all of you....>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi Nona, Thanks for your message and the website reference which I found extremely interesting. I think Di's advice about damage to the cilia is the right connection and sounds completely logical. Thanks Di. Thanks also Lee for your response. Regards Elaine Re: Re: sinus Hi Elaine - I mentioned use of salt water. I first used it when I had hay fever as a child, my father taught me how to dissolve the salt in water, put in good size container & scoop up the water with my hands placed side by side and cupped, put my nose in the water and sniff the water. At first I thought I would drown but I finally figured it out. Today, however, it is much easier. You can buy the saline solution at the drug stores. I now use Walgreen brand. I tip my head back, squeeze bottle gently and let water run in & down to my throat and cough it out. If I am stuffed up I sniff it as it goes in and it seems to penetrate into the sinus cavity better and after a few times clears the passage. I would use distilled water today to mix myself as I do not trust the water supplies all that much. The link below (Nasal Saline) should take you to a web page for recipe (I have never used baking soda just the salt - if you do not want to use baking soda just leave it out when mixing) if the link does not work the web address is typed below it. If the lining of your nose tends to be dry and uncomfortable you can also use the saline mixture to spray. Hope this helps.Nasal Saline http://www.fpnotebook.com/ENT142.htmNonastar34baby@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Good Morning Elaine, Yes, Di is correct non working cilia are the cause of build up of mucous. The salt water is an aid I use to help clear the mucous from the sinus and throat areas. Makes the breathing easier when I clean it out. :-) Have a good day. Nona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 I have also always experienced sinus problems. My sinuses are so bad that I often go months at a time without being able to smell much of anything at all. Karin hi everyone, seems that sinus troubles and bronchiectasis may go together doesnt it..I too have problems with sinus..feels like you are drowning sometimes..It affects your swallowing too, that apart from the coughing which makes you lose your voice..It is spring here in oz and with all the pollen and very strong winds at present I dont know whether to laugh or cry.Finally people who know what I am going through...pity all the rest dont...because it is not something that can be seen they think you are exagerating ...they dont see or hear first thing in the morning..hey? Hope everyone is keeping well...thank god for all of you.... Quote Link to comment Share on other sites More sharing options...
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