Frustrated and feeling hopeless

July 6, 2011

I have had Samters for about 15 years. I am 39. I have seen many different

doctors but my Samters has always been out of control. I have had 5 sinus

surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and

constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go.

When I go out to a restaurant I can't even make it though a meal without having

to excuse myself to go blow my nose. With a stuffy nose it is hard to make

business calls. Sometimes I have a hard time saying my own name, Mindi, because

of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most

days. I am careful not to exert myself because even carying a simple bag of

groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried

Singulair in the past but it didn't help and just me sleepy the next day. I

tried it twice and each time only tried it for a week. After reading the other

posts it sounds like I might have stopped it to early. I would try it again if

it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes

after a week of taking it I will even get my sense of smell back for a few

hours. My sinuses and asthma are better for a week or two. The doctor will

only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for

awhile. I have to decide which day during that week that I want to feel better.

If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I

probably had it since birth. I was given a CPAP but as soon as I started using

it I developed a bad sinus infection. Then I started developing Samter

symptoms. This means that I have had a stuffy nose the whole time and have not

been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't

anything. I have asked about aspirin desen. and none of them have been willing

to refer me. At my last ENT visit he said my polyps were " impressive " and told

me to just let him know when I'm ready for the next surgery. Even if I wanted

another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free,

I want to sleep soundly, I want to feel awake during the day, I want to be able

to go places, I want to be able to have a glass of wine........ I want to live.

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