Re: New to the group and lost

[Guest guest]

Ian, I would highly recommend Mucinex - the regular formula with no

decongestants in it. This product is Guaifenesin (also used in

Robitussin cough syrup), an expectorant. This is my main staple in

life. I, too, will cough and gag half the day without it. My ENT

explained that I don't have more mucous than other people, it's just

thicker and I'm aware of it more. I'll say!

I used to be able to get this by prescription, which was great

because I only had to pay a $5.00 copay for a huge bottle. But now

it's an off-the-shelf product and costs quite a bit. Nevertheless,

it's worth it to me, and I am certain it has kept me from getting

sinus infections, not to mention how much wear and tear it has saved

my bronchial passages. The tablets are 600mg, and the directions for

adults are " one or two tablets " every 12 hours. When I'm really bad

off, I take 1200 mg morning and night. It works wonders. (Try

buying it in bulk at Sam's Club.)

The only other drug I use is my Nasarel (Flunisolide), a steroid

nasal spray which, according to my ENT, helps to stem the mucous

production at the source, and also keeps the polyps from growing. I

might mention to the whole group that the Nasarel has also shrunk my

polyps a little. But I'm also 51 years old, and I think everything

about me is shrinking due to age, so I'm not sure what gets the

credit for that.

in land

-- In samters , " ruthfrost2000 " <ruthfrost2000@...>

wrote:

>

> My name is Ian and I am new to this forum. I have read a bunch of

> the messages but still don't know where to go next.

>

> Everything that can create mucus does so. My sinuses are completely

> full and create the worst headaches despite having had significant

> surgery to improve the opening and reduce the pressure. What is

> worse is that the mucus is also being generated in the throat and

> lungs. The lungs are regularly blocked and I often cough for many

> hours, finally bringing up solid plugs. (It tends to effect me at

> night and I am suffering from sleep deprivation) Nothing really

> reduces the effect as it is not realy asthma and it just comes back

> every day. Prednisone worked for a little while but not any more.

In

> Australia the doctors will not prescribe it long term anyway (due

to

> bone density problems etc.)Is there anything that reduces the

> production of mucus?

>

> I read that people with Samter's do not benefit from surgical polyp

> removal and they only grow back. What drug therapy has anyone found

> successful to remove them and has anybody recovered their sense of

> smell?

>

> Thanks in advance for the help. Regards, Ian

>

[Guest guest]

Welcome to the group. If you review the archives and the files section you

will find much helpful information.

As far as medications, if you have Samters then you need to approach it a

bit differently than " traditional " asthma and allergies. The problem is

more of an auto-immune disorder involving an overproduction of Lukatrimine

(I probably spelled that wrong - but Lori will correct me). They have

medicines that act to both inhibit production (I have had success using

Zyflo - the U.S. " Brand " ) and prevent uptake (For that I use Singulair (also

the US brand name).

Another approach that has been successful for many of us is Aspirin

desensitization. There is lots to read about that both in the folders and

the archives.

You are not alone, we've all been there - and been there - and been there.

The best news is that you have found this group and more information about

our condition than you are likely to encounter elsewhere.

ie

BTW, still feeling great on the Zyflo regimen. Can't say how much

difference it makes overall, but notice quickly when it is time to take

another pill. Was off yoga for two weeks - hurt my shoulder go karting -

felt the difference in both lungs and body after the first week off.

[Guest guest]

: If you have really thick mucous - I am sure that you irrigate as well? This is extremely helpful. Carol

Re: New to the group and lost

Ian, I would highly recommend Mucinex - the regular formula with no decongestants in it. This product is Guaifenesin (also used in Robitussin cough syrup), an expectorant. This is my main staple in life. I, too, will cough and gag half the day without it. My ENT explained that I don't have more mucous than other people, it's just thicker and I'm aware of it more. I'll say! I used to be able to get this by prescription, which was great because I only had to pay a $5.00 copay for a huge bottle. But now it's an off-the-shelf product and costs quite a bit. Nevertheless, it's worth it to me, and I am certain it has kept me from getting sinus infections, not to mention how much wear and tear it has saved my bronchial passages. The tablets are 600mg, and the directions for adults are "one or two tablets" every 12 hours. When I'm really bad off, I take 1200 mg morning and night. It works wonders. (Try buying it in bulk at Sam's Club.)The only other drug I use is my Nasarel (Flunisolide), a steroid nasal spray which, according to my ENT, helps to stem the mucous production at the source, and also keeps the polyps from growing. I might mention to the whole group that the Nasarel has also shrunk my polyps a little. But I'm also 51 years old, and I think everything about me is shrinking due to age, so I'm not sure what gets the credit for that. in land-- In samters , "ruthfrost2000" <ruthfrost2000@...> wrote:>> My name is Ian and I am new to this forum. I have read a bunch of > the messages but still don't know where to go next.> > Everything that can create mucus does so. My sinuses are completely > full and create the worst headaches despite having had significant > surgery to improve the opening and reduce the pressure. What is > worse is that the mucus is also being generated in the throat and > lungs. The lungs are regularly blocked and I often cough for many > hours, finally bringing up solid plugs. (It tends to effect me at > night and I am suffering from sleep deprivation) Nothing really > reduces the effect as it is not realy asthma and it just comes back > every day. Prednisone worked for a little while but not any more. In > Australia the doctors will not prescribe it long term anyway (due to > bone density problems etc.)Is there anything that reduces the > production of mucus?> > I read that people with Samter's do not benefit from surgical polyp > removal and they only grow back. What drug therapy has anyone found > successful to remove them and has anybody recovered their sense of > smell?> > Thanks in advance for the help. Regards, Ian>

[Guest guest]

Ian: Try nasal irrigation for the thick mucous in the sinuses. The polyps don't have cilia ( the little hair cells that sweep the mucous out of the sinuses) hence the mucous just sits there and becomes a nice 'garden' for infection. Irrigation helps flush the thick mucous out and that will help also the mucous draining down into the lungs and aggravating your cough.You can make yoour own solution and it is not expensive. You can buy either a bottle system or an electric irrigator system. I recommend an electric system for someone with a chronic disease that is going to need to always irrigate. They really help. I didn't 'discover' irrigation until about year three of my disease and boy did it make a difference. You can peruse my site but if you live down under I am sure there are people who sell these things closer to home. www.naturalsinushealth.com Carol

New to the group and lost

My name is Ian and I am new to this forum. I have read a bunch of the messages but still don't know where to go next.Everything that can create mucus does so. My sinuses are completely full and create the worst headaches despite having had significant surgery to improve the opening and reduce the pressure. What is worse is that the mucus is also being generated in the throat and lungs. The lungs are regularly blocked and I often cough for many hours, finally bringing up solid plugs. (It tends to effect me at night and I am suffering from sleep deprivation) Nothing really reduces the effect as it is not realy asthma and it just comes back every day. Prednisone worked for a little while but not any more. In Australia the doctors will not prescribe it long term anyway (due to bone density problems etc.)Is there anything that reduces the production of mucus?I read that people with Samter's do not benefit from surgical polyp removal and they only grow back. What drug therapy has anyone found successful to remove them and has anybody recovered their sense of smell?Thanks in advance for the help. Regards, Ian

[Guest guest]

Have you been checked for cystic fibrosis? It is rare to be diagnosed as an adult but about ten percent of cases are. I don't know how old you are. With such severe mucus production including plugs you really might want to ask about this.

Otherwise aspirin desensitization sounds like a step for you to seriously consider.

I'm glad you found the group --read the files on the site, too, not just the archived messages. There is a lot of very helpful information there.

Lori

[Guest guest]

LOL, -- yes, it's leukotrienes.

Glad the yoga and Zyflo is working for you!

Lori

[Guest guest]

Carol, yes, I do irrigate from time-to-time. My preference is a syringe bulb -

it works well

for me. However, like others in this group, it seems that irrigation loses its

effectiveness

over time, and I begin to have some minor ear problems as well from the liquid,

no matter

how careful I am. Like with everything else I've tried, it seems to work best

if I don't over-

use it and save my methods for when needed the most. But the Mucinex - varying

from

600mg once a day, to 1200mg twice a day -- seems to be the most reliable

preventive

with no decrease in benefit with everyday use. But this is just what works for

me. I think

we all have to kind of find out what regimen works for us. AND, I think things

that work

for me now didn't work 10 years ago, so it may be an ever-changing process.

Just one

more bit of vagueness about this condition!

> >

> > My name is Ian and I am new to this forum. I have read a bunch of

> > the messages but still don't know where to go next.

> >

> > Everything that can create mucus does so. My sinuses are completely

> > full and create the worst headaches despite having had significant

> > surgery to improve the opening and reduce the pressure. What is

> > worse is that the mucus is also being generated in the throat and

> > lungs. The lungs are regularly blocked and I often cough for many

> > hours, finally bringing up solid plugs. (It tends to effect me at

> > night and I am suffering from sleep deprivation) Nothing really

> > reduces the effect as it is not realy asthma and it just comes back

> > every day. Prednisone worked for a little while but not any more.

> In

> > Australia the doctors will not prescribe it long term anyway (due

> to

> > bone density problems etc.)Is there anything that reduces the

> > production of mucus?

> >

> > I read that people with Samter's do not benefit from surgical polyp

> > removal and they only grow back. What drug therapy has anyone found

> > successful to remove them and has anybody recovered their sense of

> > smell?

> >

> > Thanks in advance for the help. Regards, Ian

> >

>

[Guest guest]

I see you are a " D.O. " Carol - what's your specialty?

Andy (UK)

www.naturalsinushealth.com Carol