Re: My heads hurts! And I have so many questions

[Guest guest]

Mindi,

I agree with . A good dr will usually help with drug samples and such, maybe even antibiotics. Another thing I would add is to check the ingredients of Sudafed. It seems like I remember it might be connected with aspirin. If nothing else, the heavy dyes it uses could add to your problems. The Claritin-D would probably be less harmful. Even after free samples of other things, I keep returning to the Claritin-D over the counter. For whatever reason, my polyps haven't returned since my last surgery, about 8 years ago, altho I have had suspicious ear aches and sinus infections on one side of my head for several months now. That makes me wonder if there isn't a polyp presence in the area again.

It does seem overwhelming at times, which is a good reason to stay with this online group. Even if you can't find specific help, we are all here to lend support! Hang in there, and good luck.

Billie Garfield <scooterlu2002@...> wrote:

Dear Mindi,

I know we have a very frustrating condition, it is a never ending search just to breathe and hopefully one day smell and taste again. I know what you are going through. I am guessing you have the whole shebang....nasal polyps, asthma and no aspirin products?

If you were seeing an ENT, Allergist or Pulmonary Specialist tell them you dont have insurance they will give you samples to help you get by, especially the Advair, you need that to control your asthma so you dont need your inhaler that much. I take Claritin D quiet often and that helps me. You need to take it in the morning. Dont take it late in the day or you will never get any sleep.

I have had several surgeries to remove nasal polyps but unfortunately they eventually grow back. I have not had to take prednisone in a couple of years but when you get to the point of sheer misery, and you cant breathe sometimes that is all that will help.

As far as foods to avoid we all have different foods that effect us. I know I cant drink wine anymore, the sinuses get totally blocked. Most foods dont really bother me.

My allergist suggested aspirin desen but my pulmonary doc nixed the idea, he felt it was too risky and I was too nervous about the idea. My ENT was very honest with me and said all he could do for me is operate on the nasal polyps when the time comes for them to be take out again so I would try to find a good allergist/asthma specialist. Sometimes they have two specialized area of practice. I found an allergist with a pulmonary background. You have to really do the research to find a good doctor that will listen and help you. I have gone through many and after the first visit I can tell whether he is worth seeing again.

If you cant see a doctor and you just get to the point that you are miserable I would go to the emergency room. If your sinuses are that packed that you have a severe headache and you are using your inhaler too often it would be worth it to get on prednisone.

Hope you get to feeling better and let us know how you are doing.

soleilmindilou <mindi28@...> wrote:

Hello,I have recently figured out that I have Samters Triad. Of course, I'm aggravated about the dr's not figuring it out when it seems so obvious to me. It is such a perfect fit. I could go on and on about the problems and trips to the hospital I could have avoided but I'm sure many of you have gone through the same thing.I have tried to read many of the messages of this discussion board but it's been difficult to follow some of it.I am taking Nasonex and I used to take Advair but I ran out months ago. I take Sudafed at least once a day. I have been through so many different medications but looking back I can't judge their effectiveness because many times the Dr. was having me take Advil Cold & Sinus at the same time. I also had surgery on my sinuses a few years back for

rhinitus (or how ever you spell it). I went to so many drs and saw so many specialists.Right now I have no medical insurance and I'm back to using my inhaler once or twice a day. My sinuses are killing me! My head feels like it is going to explode and I'm so tired. Today I read the list of foods to avoid and I know I eat those things all of the time.So what can I do now to help make the pain go away?What should I do for the long term?Is there any chance I can avoid going to the drs?If I look for medical insurance what questions should I ask to ensure I get coverage that will pay for treatment for this? How do I find out if Aspirin desin. is for me? How do can I find a dr that knows about Samters?First, how do I make it through the day?Thanks,Mindi

Do you ?New and Improved - Send 10MB messages! __________________________________________________

[Guest guest]

Thank you for your reply. I definetly don't want to go to the

emergency room because that would be even more expensive.

I hate taking all the steriods but it sounds like it's the only way

to be able to avoid all this pain.

Thanks.

> Dear Mindi,

>

> I know we have a very frustrating condition, it is a never ending

search just to breathe and hopefully one day smell and taste again.

I know what you are going through. I am guessing you have the whole

shebang....nasal polyps, asthma and no aspirin products?

>

> If you were seeing an ENT, Allergist or Pulmonary Specialist tell

them you dont have insurance they will give you samples to help you

get by, especially the Advair, you need that to control your asthma

so you dont need your inhaler that much. I take Claritin D quiet

often and that helps me. You need to take it in the morning. Dont

take it late in the day or you will never get any sleep.

>

> I have had several surgeries to remove nasal polyps but

unfortunately they eventually grow back. I have not had to take

prednisone in a couple of years but when you get to the point of

sheer misery, and you cant breathe sometimes that is all that will

help.

>

> As far as foods to avoid we all have different foods that effect

us. I know I cant drink wine anymore, the sinuses get totally

blocked. Most foods dont really bother me.

>

> My allergist suggested aspirin desen but my pulmonary doc nixed the

idea, he felt it was too risky and I was too nervous about the idea.

My ENT was very honest with me and said all he could do for me is

operate on the nasal polyps when the time comes for them to be take

out again so I would try to find a good allergist/asthma specialist.

Sometimes they have two specialized area of practice. I found an

allergist with a pulmonary background. You have to really do the

research to find a good doctor that will listen and help you. I have

gone through many and after the first visit I can tell whether he is

worth seeing again.

>

> If you cant see a doctor and you just get to the point that you are

miserable I would go to the emergency room. If your sinuses are that

packed that you have a severe headache and you are using your inhaler

too often it would be worth it to get on prednisone.

>

> Hope you get to feeling better and let us know how you are doing.

>

>

[Guest guest]

Mindi, I understand your pain and frustration. This group has been very helpful for me. Finding good doctors is very important, and sometimes very difficult. I have been through 4 allergists, 2 ENTs and several primaries.I think it is important to find an allergist that doesn't treat this as just an allergy- with claritin etc.. I am not "allergic" to anything! I think antihistamines and decongestants can help on the surface but there are medicines out there that might be better. It is important to get things under control so that you feel better. this is easier said than done but really is the key to living with this problem. One thing that costs very little and helps me allot is nasal irrigation with a saline solution. Prednisone is a tricky drug. I hate the side affects but take it when I need to because it seems to break the cycle of inflammation, infection, and asthma. Then, once things have settled down, I can use other meds to maintain, but when things are really bad the only thing that helps is the prednisone. My newest doctor has been very good about helping me to understand the big picture of this problem, the day to day and the long term, not just reactionary treatments. I have had a very hard time accepting that this is a forever thing and that I need to take care of myself every day not just when I feel really bad! I have gotten much better about taking my medicine, nasal rinses, and avoiding triggers like OTCs and alcohol. It does help! You need insurance or some way to pay for doctors and meds!!! I have insurance and it still costs a lot with all the doctors and medicines, cat scans and the occasional surgery!

Knowing what this disorder is and what it is all about is the first big step in the right direction, good luck!

My heads hurts! And I have so many questions

Hello,I have recently figured out that I have Samters Triad. Of course, I'm aggravated about the dr's not figuring it out when it seems so obvious to me. It is such a perfect fit. I could go on and on about the problems and trips to the hospital I could have avoided but I'm sure many of you have gone through the same thing.I have tried to read many of the messages of this discussion board but it's been difficult to follow some of it.I am taking Nasonex and I used to take Advair but I ran out months ago. I take Sudafed at least once a day. I have been through so many different medications but looking back I can't judge their effectiveness because many times the Dr. was having me take Advil Cold & Sinus at the same time. I also had surgery on my sinuses a few years back for rhinitus (or how ever you spell it). I went to so many drs and saw so many specialists.Right now I have no medical insurance and I'm back to using my inhaler once or twice a day. My sinuses are killing me! My head feels like it is going to explode and I'm so tired. Today I read the list of foods to avoid and I know I eat those things all of the time.So what can I do now to help make the pain go away?What should I do for the long term?Is there any chance I can avoid going to the drs?If I look for medical insurance what questions should I ask to ensure I get coverage that will pay for treatment for this? How do I find out if Aspirin desin. is for me? How do can I find a dr that knows about Samters?First, how do I make it through the day?Thanks,Mindi

[Guest guest]

-Hi Mindi,

I have some new ideas that haven't been mentioned. One is an expectorant

alone, ie plain robitussin (read the lable to be sure it is just guafenison).

Take

it with a gallon of water! Use herbal tea, seltzer, ice water with lemon, how

ever it is easier to get it all down. You may take more than recomended on

the label up to 700mg in a day. Just make sure it doesn't have the

decongestant because you do not want extra of that. This is more of a

maintenance idea but it will drain your sinuses within a day as long as you

drink the gallon of water. Prednisone for one week to just relieve your

conjestion will cost only $10, so getting the RX is the problem. Scripps is

free

and near enough to you. They have a 6 month waiting list and you must show

them a pulminary function test which cost me $400.00. The nasal wash with

the water pick is the best remedy for an oncoming infection. You don't need a

RX, you can order online from water pic or there are others that are better but

I

don't know where to refer you. There is a doctor in this group, Carolynn, I

think, who is selling them, maybe she will chime in. I assume your income

may qualify you for visits at the local clinic, look for one. The hospital here

has an indigent fund to pay hospital bills. Look into that as well.

Take care, I've been there too. Pam