Re: Sinus of Relief

[Guest guest]

Hi Catergirl... Welcome to the group. I'm fairly to the group, too. I was just diagnosed with .... Samter's Hell about 7 months ago. I've had it for about one and half years. And I was in denial up until May. For me, when I am on prednisone, my nose leaks as you described. It's like water pouring out of my nose. When i'm not on prednisone it doesn't. So for me, it has to do with the steriod usage. Michele Nadia <cater_4you@...> wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a

name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean

over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time > wrote: yes... i can imagine you are at screaming point. I have my

own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it

and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

Don't worry, its a lot to accept. I've had it over 10 years and was in denial up until last week when I saw this group. I thought it was something my doctor made up to make me feel better. Whats funny is that most doctors have never even heard of it. I just described what it is to a doctor today who felt like she should've known about it. I guess the leakage does have to do with the steroids, because my nose doesn't leak when I'm not on the steroids. Then again, my nasal passage has no opening without the steroids, so I guess that explains it. The leakage didn't begin though, until after my first surgery.michele bledsoe <know_better_time@...> wrote: Hi Catergirl... Welcome to the group. I'm fairly to the group, too. I was just diagnosed with .... Samter's Hell about 7 months ago. I've had it for about one and half years. And I was in denial up until May. For me, when I am on prednisone, my nose leaks as you described. It's like water pouring out of my nose. When i'm not on prednisone it doesn't. So for me, it has to do with the steriod usage. Michele Nadia <cater_4you > wrote: Hello all,

I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and

will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on

me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time > wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while

this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally

okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it,

despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just

doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me

specifically. __________________________________________________

[Guest guest]

Hmmm, that's interesting that it didn't happen until after your first surgery. I wonder why that is the case. I haven't had surgery yet. Next week!!! I'm so excited. Yes, it is difficult to except a chronic condition. You're right, it is difficult to explain Samter's... especially to doctors! When I was in the emergency room, I really felt strange explaining it to the nurse and then the doctor. Even after I explained, the emergency room doctor told me to stop taking ALL my medicine (including Zyflo), told me I was seeing too many doctors and just follow his advice because he had the miracle drug for asthma. Let's just say his ol' miracle drug didn't work... and I was back in the emergency room three days later. Initially, when I tried to explain it to friends, I would say, "i'm

allergic to aspirin" they'd just smile and say, "well, that's easy to remedy....don't take aspirin." Michele Nadia <cater_4you@...> wrote: Don't worry, its a lot to accept. I've had it over 10 years and was in denial up until last week when I saw this group. I thought it was something my doctor made up to make me feel better. Whats funny is that most doctors have never even heard of it. I just described what it is to a doctor today who

felt like she should've known about it. I guess the leakage does have to do with the steroids, because my nose doesn't leak when I'm not on the steroids. Then again, my nasal passage has no opening without the steroids, so I guess that explains it. The leakage didn't begin though, until after my first surgery.michele bledsoe <know_better_time > wrote: Hi Catergirl... Welcome to the group. I'm fairly to the group, too. I was just diagnosed with .... Samter's Hell about 7 months ago. I've had it for about one and half years. And I was in denial up until May. For me, when I am on prednisone, my nose leaks as you described. It's like water pouring out of my nose. When i'm not on prednisone it

doesn't. So for me, it has to do with the steriod usage. Michele Nadia <cater_4you > wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living

with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe

<know_better_time > wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really

wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed

during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take

time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the

musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

I wonder why you're not on Singulair or Zyflo... have you tried either of those? MicheleNadia <cater_4you@...> wrote: Don't worry, its a lot to accept. I've had it over 10 years and was in denial up until last week when I saw this group. I thought it was something my doctor made up to make me feel better. Whats funny is that most doctors have never even heard of it. I just described what it is to a doctor today who felt like she should've known about it.

I guess the leakage does have to do with the steroids, because my nose doesn't leak when I'm not on the steroids. Then again, my nasal passage has no opening without the steroids, so I guess that explains it. The leakage didn't begin though, until after my first surgery.michele bledsoe <know_better_time > wrote: Hi Catergirl... Welcome to the group. I'm fairly to the group, too. I was just diagnosed with .... Samter's Hell about 7 months ago. I've had it for about one and half years. And I was in denial up until May. For me, when I am on prednisone, my nose leaks as you described. It's like water pouring out of my nose. When i'm not on prednisone it doesn't. So for me, it has to do with the

steriod usage. Michele Nadia <cater_4you > wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus

surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my

constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time >

wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm

almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole

thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any

benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

I was on singulair a long time ago, but its like after a while your body gets immuned to the meds that you take for a long time. Singulair is just like poppin a placebo, at this point. After years of constantly taking all there is to take, I am at a minimum right now. The steroids are the only thing that work to keep my nose open and keeps the sinus surgeries less frequent. At this point, I take my yearlty bone density tests and keep the multi-vitamins & calcium in my system everyday to keep the strong bones. I'm a vet at this point, unless they find some miracle. But, I'm tired of all these doctors, like the ER doctors that think they know the condition, make you stop taking it and you end up back to them. Thats what happened when I got pregnant, they made me stop taking everything and I ended up in the emergency room a lot, then my baby was born very small because of my stress level. I'm at my most peaceful moment, with how things are now.michele bledsoe <know_better_time@...> wrote: I wonder why you're not on Singulair or Zyflo... have you tried either of those? MicheleNadia <cater_4you > wrote: Don't worry, its a lot to accept. I've had it over 10 years and was in denial up

until last week when I saw this group. I thought it was something my doctor made up to make me feel better. Whats funny is that most doctors have never even heard of it. I just described what it is to a doctor today who felt like she should've known about it. I guess the leakage does have to do with the steroids, because my nose doesn't leak when I'm not on the steroids. Then again, my nasal passage has no opening without the steroids, so I guess that explains it. The leakage didn't begin though, until after my first surgery.michele bledsoe <know_better_time > wrote: Hi Catergirl... Welcome to the group. I'm fairly to the group, too. I was just diagnosed with .... Samter's Hell about 7 months ago. I've had it for about one and half

years. And I was in denial up until May. For me, when I am on prednisone, my nose leaks as you described. It's like water pouring out of my nose. When i'm not on prednisone it doesn't. So for me, it has to do with the steriod usage. Michele Nadia <cater_4you > wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all

the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When

I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what

I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time > wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my

left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your

peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I

would opt for them. It's not so much that I object to steroids is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather

against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

My nose leaks all the time and I'm not on steroids. It's especially embarassing when I go to classes like yoga where there are certain poses that cause stuff to come out of my nose. The embarassment is a hard part of this illness for me. I wish I could get over it, and I have to some extent, but not completely.

My husband met me after I had Samters for many years. I would imagine he's grossed out sometimes, but he doesn't mention it to me or act like he is grosseed out. I often sleep with tissues under my nose so the stuff doesn't get all over the pillow.

Lori

[Guest guest]

Hi Nadia. i also have experienced the water leak when i bend. I had surgery in 2002 and no polyps are visible yet When i had my surgery and for a while when i bent over there was a flow of clear liquid coming from my nose. It does not happen now.I just figured something happened at the surgery. I have not seen my doctor since. Ive just experience pain and inflamation for the last years i guess they are comming back.Nadia <cater_4you@...> wrote: Hello all, I just joined this group

and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have

sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the

polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time > wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been

going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally

okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it,

despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

I have trouble with leaning my head over also. This is particularly

fun as I'm a rare book expert. Basically, I've learned to lift

everything, including some very, very large folios, in order to bring

them to eye-level as much as possible. Otherwise, I'll occasionally

find myself holding a tissue under my nose with one hand while

cataloguing. Maybe TMI on all that.

It didn't happen until after my first surgery. I used to think it was

because they drastically enlarged the openings inside my nose. Now?

Who knows. It has lessened over the four yearsish since my last

surgery and was always worst on prednisone.

The embarrassment of all of this is incredibly hard to handle. I

don't care for being around people much and spend a lot of time holed

up in my apartment. A lot of the things I really used to love

(movies, opera, classes, going out to eat) are in social environments

and I can't really enjoy them anymore, to the point that I don't do

any of the first three at all. I still go out to eat, but it's often

quite unpleasant. I'd like to take night classes in mathematics or

physics, but I don't feel like I can at this point.

I can't imagine being married and sharing a room. I think I'd, at the

very least, have to have one of my own. On the other hand, I'm sort

of socially phobic anyway, so make of that what you will. I've often

said my dream marriage is one that involves a duplex.

Hope you start feeling better with all of this soon.

-Jessa

> Oh, don't feel bad, . This is totally okay. I'm just

kind of

> at screaming point with it, as I am prone to be. I dunno, I need a

> vacation or something, but can't take time off until Christmas.

This

> whole thing just kind of grates sometimes. I wish you could just

> schedule a day off from asthma occasionally.

>

> I do hope you find that surgery provides some help for you. It's

> interesting that your peak flow is 500 at the moment. I have this

> whole theory about the disease creating actual expanded lung

> capacity that just doesn't get to be used very often. The shape of

> my chest has gradually changed during the years since I got sick -

> I'm almost... barrel-chested? Weird.

>

> To be more specific about what I'm on currently: I like the

Foradil,

> other than the sore throat. I don't care for the Atrovent much at

> all. Sometimes I take it and my chest closes up completely. Which

> seems rather against the point, really. Also, I'm having some eye

> problems from it, despite making every attempt to keep my eyes

> closed and out of contact with the spray. I think it's the Xolair

> causing the musculoskeletal issues and I haven't noticed any

benefit

> from it so far. They say it can take months, though, so... maybe I

> just need to hang in there.

>

> Personally, if I could take the inhaled steroids without all kinds

> of side effects, I would opt for them. It's not so much that I

> object to steroids as that I object to what steroids, oral or

> inhaled, do to me specifically.

>

>

>

>

> __________________________________________________

>

[Guest guest]

you might try using zyrtec instead of claritin-d. claritin does

nothing for me, but with zyrtec i dont have any leakiness. i only

need 5 mg (10 is the usual dose.) i can't believe that an ent made

you have a lumbar puncture - i hope you aren't using him anymore.

jennifer

> Oh, don't feel bad, . This is totally okay. I'm just

kind of

> at screaming point with it, as I am prone to be. I dunno, I need a

> vacation or something, but can't take time off until Christmas.

This

> whole thing just kind of grates sometimes. I wish you could just

> schedule a day off from asthma occasionally.

>

> I do hope you find that surgery provides some help for you. It's

> interesting that your peak flow is 500 at the moment. I have this

> whole theory about the disease creating actual expanded lung

> capacity that just doesn't get to be used very often. The shape of

> my chest has gradually changed during the years since I got sick -

> I'm almost... barrel-chested? Weird.

>

> To be more specific about what I'm on currently: I like the

Foradil,

> other than the sore throat. I don't care for the Atrovent much at

> all. Sometimes I take it and my chest closes up completely. Which

> seems rather against the point, really. Also, I'm having some eye

> problems from it, despite making every attempt to keep my eyes

> closed and out of contact with the spray. I think it's the Xolair

> causing the musculoskeletal issues and I haven't noticed any

benefit

> from it so far. They say it can take months, though, so... maybe I

> just need to hang in there.

>

> Personally, if I could take the inhaled steroids without all kinds

> of side effects, I would opt for them. It's not so much that I

> object to steroids as that I object to what steroids, oral or

> inhaled, do to me specifically.

>

>

>

>

> __________________________________________________

>

[Guest guest]

Me too.

I work on computers so I am always bending over to look at something or connect/disconnect something so I have to be careful not to drip on anything;-) I also get the "ammonia" smell that someone else mentioned.

Rob

From: samters [mailto:samters ] On Behalf Of elizabeth lSent: Tuesday, August 08, 2006 8:56 PMsamters Subject: Re: Sinus of Relief

Hi Nadia. i also have experienced the water leak when i bend. I had surgery in 2002 and no polyps are visible yet When i had my surgery and for a while when i bent over there was a flow of clear liquid coming from my nose. It does not happen now.I just figured something happened at the surgery. I have not seen my doctor since. Ive just experience pain and inflamation for the last years i guess they are comming back.Nadia <cater_4you > wrote:

Hello all,

I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it.

I'd actually been having the polypectomy sinus surgeries every three years since 1997.

It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!!

When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage.

BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful.

Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird.

Anyway, sorry that this is so long.

Catergirlmichele bledsoe <know_better_time > wrote:

yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on.

I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either.

The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think!

Hope you feel better ....

Michele

jessafeiler3 <jessafeilerearthlink (DOT) net> wrote:

Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically.

__________________________________________________

[Guest guest]

Curiosity, what was the Doctors mikracle drug?

[Guest guest]

He put me on terbutaline.... both inhaled and oral. (and 20mg predisone). He told me that is what worked on me in the emergency room and called it a miracle drug for asthmatics. But while it helped in the emergency room, and I felt pretty good the next day... two days later my wheezing picked up again. When I went to my allergist, he was quite upset that I was on terbutaline.... and told me to stop.... and he put me back on Zyflo, upped the predisone to 60mg and put me on Qvar. My allergist said that while terbulatine will open the airways, it won't reduce the inflammation. And I was coughing up a lot of phelm which he said was due to the inflammation. So I tried to figure this 'drug' thing out... and I found this website that helped me some... http://www.lakesidepress.com/pulmonary/Asthma-Rx.htm

Micheleuarisk1@... wrote: Curiosity, what was the Doctors mikracle drug? __________________________________________________

[Guest guest]

I would like to see more profiles like this one too. I have had Samter's for about 10 years too and now I am having the fluid leaking from my nose as you said. I have my sense of smell back sometimes and I can always taste but I get depressed about not being able to smell sometimes. I have had two polypectomies and so far I am fine since the last one. I have a new ENT in Decatur, Ga. and he knows alot about the disease. He has been a wonderful blessing. I am currently taking Nasacort, and the Xolair shots only for the Samters. I was taken off of Advair and the other drugs. I occassionally have to take guafenasine for the mucus if it comes up but so far I am fine and feeling better than I have in years. My new ENT is with ENT of Georgia and his name is Dr. Hewitt. He is really good. I was with another doctor with the same group but I had to leave him. He was just not as good. My ears are a lot better since I started seeing hime to.patrick trice

<patricktrice48@...> wrote: I would like to see more profiles such as this from each of the contributors to this site; perhaps they could be listed under "histories, profiles, personal" (I am a computer dunce). This disease seems to have so many variations. Perhaps we could do our own studies,compile our own statistics, but I would not know the easy way to do this ( if there is any). TriceNadia <cater_4you@...> wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell.

I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of

prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage. BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have

gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time@...> wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep.

I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing

just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit

from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________

[Guest guest]

Catergirl: I am coming in late in this discussion but do yoou use nasal irrigation? I find it incredibly helpful Carol

Re: Sinus of Relief

I would like to see more profiles like this one too. I have had Samter's for about 10 years too and now I am having the fluid leaking from my nose as you said. I have my sense of smell back sometimes and I can always taste but I get depressed about not being able to smell sometimes. I have had two polypectomies and so far I am fine since the last one. I have a new ENT in Decatur, Ga. and he knows alot about the disease. He has been a wonderful blessing. I am currently taking Nasacort, and the Xolair shots only for the Samters. I was taken off of Advair and the other drugs. I occassionally have to take guafenasine for the mucus if it comes up but so far I am fine and feeling better than I have in years. My new ENT is with ENT of Georgia and his name is Dr. Hewitt. He is really good. I was with another doctor with the same group but I had to leave him. He was just not as good. My ears are a lot better since I started seeing hime to.patrick trice <patricktrice48 > wrote: I would like to see more profiles such as this from each of the contributors to this site; perhaps they could be listed under "histories, profiles, personal" (I am a computer dunce). This disease seems to have so many variations. Perhaps we could do our own studies,compile our own statistics, but I would not know the easy way to do this ( if there is any). TriceNadia <cater_4you > wrote:

Hello all,

I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it.

I'd actually been having the polypectomy sinus surgeries every three years since 1997.

It is such a huge relief to know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!!

When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage.

BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful.

Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird.

Anyway, sorry that this is so long.

Catergirlmichele bledsoe <know_better_time > wrote:

yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on.

I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either.

The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think!

Hope you feel better ....

Michele

jessafeiler3 <jessafeilerearthlink (DOT) net> wrote:

Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically.

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[Guest guest]

I do not use nasal irrigation, although I am suppose to. I will definitely try that though.Carol <shedokdo@...> wrote: Catergirl: I am coming in late in this discussion but do yoou use nasal irrigation? I find it incredibly helpful Carol Re: Sinus of Relief I would like to see more profiles like this one too. I have had Samter's for about 10 years too and now I am having the fluid leaking from my nose as you said. I have my sense of smell back sometimes and I can always taste but I get depressed about not being able to smell sometimes. I have had two polypectomies and so far I am fine since the last one. I have a new ENT in Decatur, Ga. and he knows alot about the disease. He has been a

wonderful blessing. I am currently taking Nasacort, and the Xolair shots only for the Samters. I was taken off of Advair and the other drugs. I occassionally have to take guafenasine for the mucus if it comes up but so far I am fine and feeling better than I have in years. My new ENT is with ENT of Georgia and his name is Dr. Hewitt. He is really good. I was with another doctor with the same group but I had to leave him. He was just not as good. My ears are a lot better since I started seeing hime to.patrick trice <patricktrice48 > wrote: I would like to see more profiles such as this from each of the contributors to this site; perhaps they could be listed under "histories, profiles, personal" (I am a computer dunce). This disease seems to have so many variations. Perhaps we could do our own studies,compile our own statistics, but I would not

know the easy way to do this ( if there is any). TriceNadia <cater_4you > wrote: Hello all, I just joined this group and have been reading the emails and messages for the past few days. I must say that I am floored, yet relieved to see that I am not the only one who is going through Samter's Hell. I've had this condition for a little over 10 years now and I've been through all of the meds that you guys have been talking about, and the side effects that include all the sleepless nights, post nasal drip, back of the throat choking nasal drip, the sneezing, the wheezing, the itching, watery eyes, dry eyes, dry mouth, abnormal hair growth, you name it, I've been through it. I'd actually been having the polypectomy sinus surgeries every three years since 1997. It is such a huge relief to

know that I am not alone with this condition. I thought it was a miracle that I'd finally met a doctor that put a name to my condition, as well as letting me know that I will be heavily medicated until further notice, especially with the prednisone, and will probably continue to have sinus surgeries throughout my life. Every other doctor just doped me up with meds. I felt like I'd gone grocery shopping every time I went to the doctor. I now only take 5mg of prednisone, flonase, maxidex, and claritin d, but every three months I have to get 1cc of prednisone injected into my nose, via very sharp needle. It sucks!! When I try to explain to my friends and co-workers that I have no sense of taste and/or smell, they look at me like I have pie on my face. When I try to expain my condition people get grossed out. I fear living with someone who will have to be disturbed by my constant middle of the night obnoxious noseblowing and constant nose drippage.

BTW, does anyone have problems with their nose dripping like a leaky faucet when you, for instance, lean over to touch your toes or reach to pick something up from the floor? I once had an ENT doctor that did a lumbar puncture on me, because he thought the polyps ate away at the bones in my face and caused spinal fluid to leak from my nose. Lumbar punctures are extremely painful. Anyhow, I'm glad to have gotten that off my chest, but have so many questions and information to share for those of you out there with Samter's Triad. I need someone to talk to who can relate to what I'm going through. I feel like I'm part of a new family now. Its weird. Anyway, sorry that this is so long. Catergirlmichele bledsoe <know_better_time > wrote: yes... i can imagine you are at screaming point. I have my own business, and work from home, but it's been tough keeping it going. I just have had no motivation or organizational skills while this has been going on. I don't care for the steriods either. Besides all the other wonderful side effects... I can't sleep. I've been up at 2am every day and stay up until 10pm! I'm not hungry either. The thing I have is racoon eyes. I mean, it looks like someone punched my left eye... right eye is not as bad. I guess it is because my sinuses are so backed up. I have to wear oodles of make-up and it helps some. My friends are use to it, but when I go out I really wonder what people must think! Hope you feel better .... Michele jessafeiler3 <jessafeilerearthlink (DOT) net> wrote: Oh, don't feel bad, . This is totally okay. I'm just kind of at screaming point with it, as I am prone to be. I dunno, I need a vacation or something, but can't take time off until Christmas. This whole thing just kind of grates sometimes. I wish you could just schedule a day off from asthma occasionally.I do hope you find that surgery provides some help for you. It's interesting that your peak flow is 500 at the moment. I have this whole theory about the disease creating actual expanded lung capacity that just doesn't get to be used very often. The shape of my chest has gradually changed during the years since I got sick - I'm almost... barrel-chested? Weird.To be more specific about what I'm on

currently: I like the Foradil, other than the sore throat. I don't care for the Atrovent much at all. Sometimes I take it and my chest closes up completely. Which seems rather against the point, really. Also, I'm having some eye problems from it, despite making every attempt to keep my eyes closed and out of contact with the spray. I think it's the Xolair causing the musculoskeletal issues and I haven't noticed any benefit from it so far. They say it can take months, though, so... maybe I just need to hang in there.Personally, if I could take the inhaled steroids without all kinds of side effects, I would opt for them. It's not so much that I object to steroids as that I object to what steroids, oral or inhaled, do to me specifically. __________________________________________________