Re: wake up at 3 in the morning with asthma, severe cough

[Guest guest]

Hate to say it, but salicylates are everywhere -- so its very very hard to avoid them. Only a few of us have had luck with low salicylate diets and they are very demanding. Depending on where you live, trees such as Aspen and Willow produce salicylates, which can get in the air. If you have any chance of being desensitized, do it. It may not solve all your problems, but you can eat normally again, and use toothpaste and it takes some of the stress out of Samter’s.Good luck!On Aug 25, 2011, at 10:36 AM, Darcie wrote:

Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

[Guest guest]

You could be reacting to dust mights, pets sleeping in the room with you, strong

perfumes from laundry detergent, pollen from outside etc. Allergens where you

are sleeping can really hit you hard since you are spend and extended period of

time there. You may need to do some allergy screenings to determine the source.

If it ends up being environmental allergies you might try using allergy covers

on pillows and mattress, sleep with windows closed, use a HEPA Filter in the

room and don't have pets in your bedroom. Many of us with Samter's have

environmental allergies that cause severe problems the same way the salycilates

do. I get immunotherapy shots for my environmentals and did aspirin desense.

It is rare to find a trigger for me now, but before I was a mess.

Jennie

>

> > Today, I am going out to shop for low salicylate foods. I have a question

though about cleaning products. Could my bed linens be causing me to wake up

every night with respiratory issues? Or am I reacting to the foods I am eating

as I have not completely started the low salicyate diet? I must say I am sick

and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

> >

> >

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[Guest guest]

Thanks for the quick responses. I am not sure what is going on but I am very

frustrated. I went from sinus infections and migraines for the last 5 years to

asthma, coughing, post nasal drip and severe congestion and edema ever since

starting immunotherapy at the recommendation of my ent. My allergist says my

symptoms are just me draining now and to stay the course but I know severe

reactions to beer, ibuprofen and excedrin migraine with the polyps and asthma

are Samters. Could you please tell me some details about your aspirin

desensitization? The initial and continuing treatment as well as possible side

effects? Eating normal again sounds wonderful!

> >

> > > Today, I am going out to shop for low salicylate foods. I have a question

though about cleaning products. Could my bed linens be causing me to wake up

every night with respiratory issues? Or am I reacting to the foods I am eating

as I have not completely started the low salicyate diet? I must say I am sick

and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

> > >

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[Guest guest]

At one time I would experience the same thing at night when sleeping. The

problem went away when I switched to Ultra Purex Hypoallergenic laundry

detergent that is 100% free of perfumes and dyes.

wake up at 3 in the morning with asthma, severe cough

Today, I am going out to shop for low salicylate foods. I have a question

though about cleaning products. Could my bed linens be causing me to wake

up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say

I am sick and tired of being sick and tired and this is just the beginning.

2 more questions..., (1)what supplements can " we " take in order to maintain

somewhat of a balanced diet? (2)can everyone start posting meal plans that

have worked for them so we can start getting some variety? Thanks, Rob.

------------------------------------

[Guest guest]

Oh Darcie I so remember the misery I and most on here experience. The constant state of "reaction" is absolutely miserable. No sleep, depression, no comfort and rarely any relief. Let me tell you....after i had aspirin desensitization my life changed so much. Im not trying to over state the benefits of aspirin desensitization and the relief it has given me in my life. Instead of dealing with my reactions (asthma, nasal drip, itchy, sneezy) everyday......the desensitization gave me at least 80% relief. I cant tell u enough....i was at one point before desensitization wondering just how i could live my life feeling constantly sick.....but the desensitization was a complete God sent. I can not encourage u enough to go through the process. It seems on this forum that it is the one universal sources of relief for us with samters. Bianca On Aug 25, 2011, at 11:50 AM, "Darcie" <darciecoe@...> wrote:

Thanks for the quick responses. I am not sure what is going on but I am very frustrated. I went from sinus infections and migraines for the last 5 years to asthma, coughing, post nasal drip and severe congestion and edema ever since starting immunotherapy at the recommendation of my ent. My allergist says my symptoms are just me draining now and to stay the course but I know severe reactions to beer, ibuprofen and excedrin migraine with the polyps and asthma are Samters. Could you please tell me some details about your aspirin desensitization? The initial and continuing treatment as well as possible side effects? Eating normal again sounds wonderful!

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> > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Hi Bianca. Could you tell me about the process? How much aspirin do you take

currently? Is it for the rest of your life? Any side effects? Are you now

able to eat and drink normally without incident? Thanks

> > > >

> > > > > Today, I am going out to shop for low salicylate foods. I have a

question though about cleaning products. Could my bed linens be causing me to

wake up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say I am

sick and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Thanks. I will try it

>

>

> At one time I would experience the same thing at night when sleeping. The

> problem went away when I switched to Ultra Purex Hypoallergenic laundry

> detergent that is 100% free of perfumes and dyes.

>

>

>

> wake up at 3 in the morning with asthma, severe cough

>

>

> Today, I am going out to shop for low salicylate foods. I have a question

> though about cleaning products. Could my bed linens be causing me to wake

> up every night with respiratory issues? Or am I reacting to the foods I am

> eating as I have not completely started the low salicyate diet? I must say

> I am sick and tired of being sick and tired and this is just the beginning.

> 2 more questions..., (1)what supplements can " we " take in order to maintain

> somewhat of a balanced diet? (2)can everyone start posting meal plans that

> have worked for them so we can start getting some variety? Thanks, Rob.

>

>

>

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[Guest guest]

Firstly, I have been on immuno-therapy shots for environmental allergies for 5

years. I did two years with shots twice a week, and for the last three years

have done shots every 4-6 weeks at my maintenance dose. It took 2+ years for me

to realize the benefits of this, and it took longer for me to level up to the

therapeutic doses due to the hyper nature of my reactions (the Samter's thing!).

BUT I went from having very severe, life threatening environmental allergy

reactions (deadly hay fields....) to having NO allergy symptoms/asthma during

peak season, without taking any additional medication. So this has been major

improvement in quality of life for me, and worth every shot.

I was medically desensitized to aspirin 2 weeks after image guided sinus

surgery. It was done at National Jewish Hospital in Denver, CO over 2 days.

The day started with a dose of singulair and getting baseline breathing tests.

Then the asprin challenge in increasing doses. I reacted at 120mg, I believe

with congestion and sneezing, increased mucus production. I was at 180mg at the

end of day one, and at 650mg at the end of day two. There were no further

reactions after the initial one and I was well monitored (heart monitor, regular

breathing tests, IV port, etc.) throughout.

I've been desensitized to aspirin for 2 years. I started at a daily dose of

1300mg and now take only 325mg. Dropped to 650mg at 6mo months post, then to 325

about 18 months post if I remember correctly. Side effects for me were stomach

issues at the higher doses, so it was nice to be able to drop down. I have no

side effects currently. I also have no polyps, no regular asthma (though I do

get it if I get sick)and all my allergies are controlled with the shots. I

don't have any eating restrictions. I went from 6-8 infections a year requiring

antibiotics and/or steroids to 1-2.

This has been a life changer for me. Two and a half years ago I didn't know if I

could get up in the morning due to the chronic pain and infection and my little

daughter's voice was excruciating to me. I hadn't smelled anything, including

poopy diapers, in 6-7 years. After surgery and desense I have had my SOS

consistently. Everyone has different levels of success, but it has been a great

course of treatment for me.

Jennie

> > >

> > > > Today, I am going out to shop for low salicylate foods. I have a

question though about cleaning products. Could my bed linens be causing me to

wake up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say I am

sick and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

> > > >

> > > >

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>

[Guest guest]

I had my desensitization done at a doctors office over the course od two days. They start with half of a baby aspirinand double the dose every hour or so until u find the mg amount that u react at. After my initial reaction at 80mg the doctor gave me somr benedryl and i went home for the night. Next day went in started at 80Mg and didnt have a reaction. I continued the process up to my maintenance dose of 1200 mg. I never reacted again after the 80mg dose. Im supposed to take 4- 325 mg of aspirin a day but i have reduced that to 3 because its still effective. Before i had desensitized i had found one of my main food triggers was coffee.Once i was desensitized i have noticed like i said about an 80% relief.im still allergic to other things that arent salicylaye related like pollen - so i have some outdoor allergies.I also take 10mg singulair and 1 claritin D 24 hour every day (or most days)Side effects- i bruise more easily. But i take aspirin that is entrencic (sp?) coated so its easier on my stomach. I dont have any other side effects and ive been desensitized for about 2 years now. I havent used my inhaler more than 2 times this year. Before desensitization i used it almost everyday.I do believe its for the rest of your life. But id much rather be on aspirin then some other drug out there.Bianca On Aug 25, 2011, at 12:08 PM, "Darcie" <darciecoe@...> wrote:

Hi Bianca. Could you tell me about the process? How much aspirin do you take currently? Is it for the rest of your life? Any side effects? Are you now able to eat and drink normally without incident? Thanks

> > > >

> > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Jennie, your letter is very encouraging to me. I guess the first thing I have

to learn is patience if I am to get back to a good quality of life. I have 2

questions for you. 1. How did you even get started in getting the

desensitization? 2. Are you currently on any medications now?

Thanks, and so glad you are feeling good!

> > > >

> > > > > Today, I am going out to shop for low salicylate foods. I have a

question though about cleaning products. Could my bed linens be causing me to

wake up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say I am

sick and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

> > > > >

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[Guest guest]

Thanks Bianca for the quick reply and I am so happy you are well. I love

coffee. Are you able to drink it now? Maybe, that's just the motivation I need

to be patient and get the help I need. I am interested in how it was brought up

to you to go with aspirin s=desensitization. As I just heard about it for the

first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a

question though about cleaning products. Could my bed linens be causing me to

wake up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say I am

sick and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

I don't know where you live, but in most urban centers there are allergists or ENT's who have experience with desensitization. It is expensive, but usually covered by insurance. As others have reported, the standard way is to do it in two days under experienced medical supervision. Beware of doctors who don't know what they are doing and who want to spread the process out over a long time. And yes, you can drink coffee and eat anything with salicylates in it -- the salicylates in the aspirin are higher than anything you'll encounter in food, and therefore they are no longer an issue. Usual starting dose is 1300/day. Some drop down quickly if they can't tolerate this. Over time the dose of aspirin may be reduced even more. A main benefit for most is greatly reduced or no polyps.On Aug 25, 2011, at 3:33 PM, Darcie wrote:

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

I heard about desensitization from this group and went to my doctor about it. Luckily i have a great doctor that understands that this disease is about finding and exploring the solutions that work best. He was totally open to trying it and found an allergy clinic that would provide the process. I loved coffee too and before i got desensitized i cut coffee out cold turkey based on reading in this forumn. That alone was drastic as well and reduced my reactions a lot. When i saw how much removing coffee from my diet helped me i was sold on the full desensitization. At the time i didnt think taking aspirin would help me because of how awful i felt. I do drink coffee now that i take aspirin and have no issue with it any longer.The only time i do have problems is when i forget to take my meds. By the next day i can feel it in my system. Bianca On Aug 25, 2011, at 1:33 PM, "Darcie" <darciecoe@...> wrote:

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Hi Darcie,Your bed could definitely be a problem as it's a haven for dust mites. I vaccuum my bed regularly and spray it with Glen 20 plus use a special allergy proof mattress protector as well as on pillows.Unfortunately a salicylate free diet didn't help me in the least. Have you been to a sleep apnea clinic? I did the test some years ago and it showed that I suffered from this to a degree hence my feeling so tired the next day.samters From: darciecoe@...Date: Thu, 25 Aug 2011 16:36:25 +0000Subject: wake up at 3 in the morning with asthma, severe cough

Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

[Guest guest]

Absolutely. I fell into the category of my doctor dropping the ball on me so to speak and put me on and LEFT me on 40 mg of aspirin for weeks. I asked my husband today, his thoughts on that, after we saw her today and told her I desensitized myself at home. (She was genuinely happy for me that it worked yet had to state, she can not endorse doing it at home. I told her what she did to me was CRIMINAL, taking 40 mgs for days on end!) His thoughts were she was afraid of the liability since we live hours away from her. I would have gotten a hotel room if necessary. For whatever reasons, I forgive her for this blooper because she really has helped me in so many ways. I can't count the number of days I woke up at 3 am sicker than a dog, not being able to breathe, wanting to die because I was so tired of being sick AND the other 3 am's

where I was still awake, afraid to go to sleep out of fear that I would not wake up due to the difficulty of breathing.My doc first got me on Zyflo. Then Xolair. That helped me to decrease steroids to virtually nothing. I was in hyper-sensitive reaction mode to everything. If I just looked at something I was allergic to, I was down and out....sinus issues, polyps flaring, asthma, hives, etc.After stabilizing on the Xolair, she started me with the aspirin desens. (she did not follow 'normal' protocol) and I ended up finishing the process on my own at home, which I DO NOT RECOMMEND to anyone to do. Period.She is recommending I take 325 mg two times a day and if I am still having problems, I can increase the dose to twice that amount, however, if 325 mg two times a day is working, I will stay with it. She did run a blood test that checked my immune

system and it came up as 1. The range was 0-14. She offered a pneumonia shot today and will recheck my blood in 6 weeks to see if my immune level increases. She said it should go up. If it does not, she thinks I may have a genetic immune disorder. I am positive that my levels WILL go up with this shot. I am new to this site, but have learned SO much in just a few days. If you are in that '3 am nightmare mode', hold on to the facts, there are those with Samter's who do get better and enjoy quality living. Just never give up, keep searching for what works and get a doctor who truly cares to see you get well. =)She has run a myriad of blood tests. Found low Vitamin D levels.

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Amen . Ive been on this site for 4 years now and it was literAlly a life saver for me. Bianca On Aug 25, 2011, at 7:08 PM, M Do <michellemdo@...> wrote:

Absolutely. I fell into the category of my doctor dropping the ball on me so to speak and put me on and LEFT me on 40 mg of aspirin for weeks. I asked my husband today, his thoughts on that, after we saw her today and told her I desensitized myself at home. (She was genuinely happy for me that it worked yet had to state, she can not endorse doing it at home. I told her what she did to me was CRIMINAL, taking 40 mgs for days on end!) His thoughts were she was afraid of the liability since we live hours away from her. I would have gotten a hotel room if necessary. For whatever reasons, I forgive her for this blooper because she really has helped me in so many ways. I can't count the number of days I woke up at 3 am sicker than a dog, not being able to breathe, wanting to die because I was so tired of being sick AND the other 3 am's

where I was still awake, afraid to go to sleep out of fear that I would not wake up due to the difficulty of breathing.My doc first got me on Zyflo. Then Xolair. That helped me to decrease steroids to virtually nothing. I was in hyper-sensitive reaction mode to everything. If I just looked at something I was allergic to, I was down and out....sinus issues, polyps flaring, asthma, hives, etc.After stabilizing on the Xolair, she started me with the aspirin desens. (she did not follow 'normal' protocol) and I ended up finishing the process on my own at home, which I DO NOT RECOMMEND to anyone to do. Period.She is recommending I take 325 mg two times a day and if I am still having problems, I can increase the dose to twice that amount, however, if 325 mg two times a day is working, I will stay with it. She did run a blood test that checked my immune

system and it came up as 1. The range was 0-14. She offered a pneumonia shot today and will recheck my blood in 6 weeks to see if my immune level increases. She said it should go up. If it does not, she thinks I may have a genetic immune disorder. I am positive that my levels WILL go up with this shot. I am new to this site, but have learned SO much in just a few days. If you are in that '3 am nightmare mode', hold on to the facts, there are those with Samter's who do get better and enjoy quality living. Just never give up, keep searching for what works and get a doctor who truly cares to see you get well. =)She has run a myriad of blood tests. Found low Vitamin D levels.

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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:make sure you take an acid inhibitor to protect your stomach.ieOn Aug 25, 2011, at 11:08 PM, M Do wrote:

Absolutely. I fell into the category of my doctor dropping the ball on me so to speak and put me on and LEFT me on 40 mg of aspirin for weeks. I asked my husband today, his thoughts on that, after we saw her today and told her I desensitized myself at home. (She was genuinely happy for me that it worked yet had to state, she can not endorse doing it at home. I told her what she did to me was CRIMINAL, taking 40 mgs for days on end!) His thoughts were she was afraid of the liability since we live hours away from her. I would have gotten a hotel room if necessary. For whatever reasons, I forgive her for this blooper because she really has helped me in so many ways. I can't count the number of days I woke up at 3 am sicker than a dog, not being able to breathe, wanting to die because I was so tired of being sick AND the other 3 am's

where I was still awake, afraid to go to sleep out of fear that I would not wake up due to the difficulty of breathing.My doc first got me on Zyflo. Then Xolair. That helped me to decrease steroids to virtually nothing. I was in hyper-sensitive reaction mode to everything. If I just looked at something I was allergic to, I was down and out....sinus issues, polyps flaring, asthma, hives, etc.After stabilizing on the Xolair, she started me with the aspirin desens. (she did not follow 'normal' protocol) and I ended up finishing the process on my own at home, which I DO NOT RECOMMEND to anyone to do. Period.She is recommending I take 325 mg two times a day and if I am still having problems, I can increase the dose to twice that amount, however, if 325 mg two times a day is working, I will stay with it. She did run a blood test that checked my immune

system and it came up as 1. The range was 0-14. She offered a pneumonia shot today and will recheck my blood in 6 weeks to see if my immune level increases. She said it should go up. If it does not, she thinks I may have a genetic immune disorder. I am positive that my levels WILL go up with this shot. I am new to this site, but have learned SO much in just a few days. If you are in that '3 am nightmare mode', hold on to the facts, there are those with Samter's who do get better and enjoy quality living. Just never give up, keep searching for what works and get a doctor who truly cares to see you get well. =)She has run a myriad of blood tests. Found low Vitamin D levels.

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

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> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

yep. rantitidine. thank you!

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

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> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

This post really hit home for me. I experienced the exact same thing. After

coating pillows, mattress and duvet with allergy covers, changing detergent,

placing a HEPA purifier in the bedroom, exhaustive cleaning, no pet rules in the

bedroom, bringing in an environmental allergen testing company, etc, I still had

all of the same issues you are experiencing. I was so exhausted and depressed,

and terrified of going to bed. I had no idea how I could continue to work.

I think the tipping point for me on being able to sleep was desense and zyflo.

I started both at the same time, but I definitely think each is integral to

helping (ie, if I forget one for even a few hours and get off of my normal

schedule, my nose starts to completely get stuffed up again).

I am by no means completely better, and I still straddle the fence of being

barely under control. I am also terrified when I cough - terrified that the

cough is coming back. However, I can sleep through the night, and what a

blessing that is.

[Guest guest]

I guess the more appropriate term for the shot I received is: "pneumococcal vaccine" =0

Thanks Bianca for the quick reply and I am so happy you are well. I love coffee. Are you able to drink it now? Maybe, that's just the motivation I need to be patient and get the help I need. I am interested in how it was brought up to you to go with aspirin s=desensitization. As I just heard about it for the first time yesterday..

Thanks again, Rob.

> > > > > >

> > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Thanks ladies for all your well wishes. If it wasn't for finding this forum and

corresponding with you all, I would be " freaking " out. I know my wife has

already had enough of me feeling like this... I did go to my ENT today and when

I mentioned Samter's he immediately shrugged it off and stated, " that's not it

because that's very rare. " Then as I told him about educating myself through

this forum and learning that my symptoms mirror those suffering from Samter's,

he came around and started being a little open minded. He remembered the guy

with the wife and young son who was highly active, loved to surf, travel, play

softball and is a firefighter that came in that first visit 6 years ago with a

sinus infection. Today, when I came in, I was a completely different guy who is

always sick and tired. The ENT did a CT scan which revealed polyps, pus, and

infection with 98% blockage throughout max. and frontal sinuses. That scan

coupled with the fact that I am sucking on my inhaler 15-20x/day has led to a

referral at Scripps San Diego and also a second opinion with an ENT at Stanford.

I am not sure why I need to see another ENT but I am happy that he referred me

to an allergist that does asa desens. He also stated that I would need an

additional sinus surgery but he is going to wait for the allergist plan of

treatment. In addition, he sent me home with a levaquin script.

My question for you guys is, at this point, does it matter to take antibiotics?

Also, wanted to say that I am more and more convinced I have this disease after

having severe cough, congestion and green mucous following eating what I thought

was a healthy lunch. Now, I don't know what to do about dinner.

Take care everyone. Rob

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> > > > > > > > Today, I am going out to shop for low salicylate foods. I have a

question though about cleaning products. Could my bed linens be causing me to

wake up every night with respiratory issues? Or am I reacting to the foods I am

eating as I have not completely started the low salicyate diet? I must say I am

sick and tired of being sick and tired and this is just the beginning. 2 more

questions..., (1)what supplements can " we " take in order to maintain somewhat of

a balanced diet? (2)can everyone start posting meal plans that have worked for

them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

Don't know how long you have to wait for your appointments -- sounds to me like it might be hard to clear an infection with sinuses as blocked as yours. If your appointments are not far off, you may want to wait until you've consulted the specialists.And just a warning about Levaquin -- if you've had it before you probably know if you tolerate it well -- otherwise I'd be very careful. If it makes you feel terrible don't keep taking it -- there are lots of nasty side effects, tendon damage being one of them. Some people have no problem with it, but if it feels like poison I'd quit right away. It's not worth destroying your health in other ways to try to kill an infection.On Aug 26, 2011, at 5:31 PM, Darcie wrote: Thanks ladies for all your well wishes. If it wasn't for finding this forum and corresponding with you all, I would be "freaking" out. I know my wife has already had enough of me feeling like this... I did go to my ENT today and when I mentioned Samter's he immediately shrugged it off and stated, "that's not it because that's very rare." Then as I told him about educating myself through this forum and learning that my symptoms mirror those suffering from Samter's, he came around and started being a little open minded. He remembered the guy with the wife and young son who was highly active, loved to surf, travel, play softball and is a firefighter that came in that first visit 6 years ago with a sinus infection. Today, when I came in, I was a completely different guy who is always sick and tired. The ENT did a CT scan which revealed polyps, pus, and infection with 98% blockage throughout max. and frontal sinuses. That scan coupled with the fact that I am sucking on my inhaler 15-20x/day has led to a referral at Scripps San Diego and also a second opinion with an ENT at Stanford. I am not sure why I need to see another ENT but I am happy that he referred me to an allergist that does asa desens. He also stated that I would need an additional sinus surgery but he is going to wait for the allergist plan of treatment. In addition, he sent me home with a levaquin script. My question for you guys is, at this point, does it matter to take antibiotics? Also, wanted to say that I am more and more convinced I have this disease after having severe cough, congestion and green mucous following eating what I thought was a healthy lunch. Now, I don't know what to do about dinner. Take care everyone. Rob > > > > > > > > > > > > > > > > > Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Hi Rob,

I'm glad you've joined this forum. It does sound like you have Samters. At this stage the first thing you need to do is have antibiotics to help reduce your infection and steroids to reduce your polyps and inflamation a bit to allow for some drainage. But as you can probably guess from my use of language, this will only be a little bit helpful.

What you need is surgery to clear out your sinuses. Then you need to do aspirin desense. If you can do the aspirin desense soon after surgery this will help your chances of successful desense.

Good luck and keep in touch to let us know how you get on,

Becky

From: Darcie <darciecoe@...>samters Sent: Sat, 27 August, 2011 0:31:57Subject: Re: wake up at 3 in the morning with asthma, severe cough

Thanks ladies for all your well wishes. If it wasn't for finding this forum and corresponding with you all, I would be "freaking" out. I know my wife has already had enough of me feeling like this... I did go to my ENT today and when I mentioned Samter's he immediately shrugged it off and stated, "that's not it because that's very rare." Then as I told him about educating myself through this forum and learning that my symptoms mirror those suffering from Samter's, he came around and started being a little open minded. He remembered the guy with the wife and young son who was highly active, loved to surf, travel, play softball and is a firefighter that came in that first visit 6 years ago with a sinus infection. Today, when I came in, I was a completely different guy who is always sick and tired. The ENT did a CT scan which revealed polyps, pus, and infection with 98% blockage throughout max. and frontal sinuses. That scan coupled with the fact that I

am sucking on my inhaler 15-20x/day has led to a referral at Scripps San Diego and also a second opinion with an ENT at Stanford. I am not sure why I need to see another ENT but I am happy that he referred me to an allergist that does asa desens. He also stated that I would need an additional sinus surgery but he is going to wait for the allergist plan of treatment. In addition, he sent me home with a levaquin script.My question for you guys is, at this point, does it matter to take antibiotics? Also, wanted to say that I am more and more convinced I have this disease after having severe cough, congestion and green mucous following eating what I thought was a healthy lunch. Now, I don't know what to do about dinner.Take care everyone. Rob> > > > > > > > > > > > > > > >

> Today, I am going out to shop for low salicylate foods. I have a question though about cleaning products. Could my bed linens be causing me to wake up every night with respiratory issues? Or am I reacting to the foods I am eating as I have not completely started the low salicyate diet? I must say I am sick and tired of being sick and tired and this is just the beginning. 2 more questions..., (1)what supplements can "we" take in order to maintain somewhat of a balanced diet? (2)can everyone start posting meal plans that have worked for them so we can start getting some variety? Thanks, Rob.> > > > > > > > > > > > > > > > > >> > > > > > > >> > > > > > >> > > > > > > > > > > >> > > > >> > > > > > > >>

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[Guest guest]

Thanks Becky. I wish I could get this all started today... I live in Las Vegas

and everything I do is going to take place out of state. It's been difficult

but I need to stop feeling sorry for myself and tackle it head on. As the days

go on and I get sicker and sicker, i am more convinced it's Sampter's. (I

couldn't even eat cereal this morning without a reaction) Now, it's convincing

others; family, friends, work and doctors that it is. So far, I am getting

resistance from everywhere which is something I am sure everyone on this forum

has experienced. However, I do look forward to the day when I can go back to

some semblance of the quality of life I used to have and go on this forum and be

as supportive and helpful to others as you all have been to me.

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> >question though about cleaning products. Could my bed linens be causing me to

> >wake up every night with respiratory issues? Or am I reacting to the foods I

am

> >eating as I have not completely started the low salicyate diet? I must say I

am

> >sick and tired of being sick and tired and this is just the beginning. 2 more

> >questions..., (1)what supplements can " we " take in order to maintain somewhat

of

> >a balanced diet? (2)can everyone start posting meal plans that have worked

for

> >them so we can start getting some variety? Thanks, Rob.

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[Guest guest]

I have and did find that my relationships suffered greatly when i was in the state before i was diagnosed an started getting some relief. It adversly affected a lot of things mainly from exhaustion, irritability, amd depression that this disease caused. Hang in there. Things wont be perfect but u can absolutely take the turn of living with this disease and life being more manageableBianca On Aug 27, 2011, at 11:20 AM, "Darcie" <darciecoe@...> wrote:

Thanks Becky. I wish I could get this all started today... I live in Las Vegas and everything I do is going to take place out of state. It's been difficult but I need to stop feeling sorry for myself and tackle it head on. As the days go on and I get sicker and sicker, i am more convinced it's Sampter's. (I couldn't even eat cereal this morning without a reaction) Now, it's convincing others; family, friends, work and doctors that it is. So far, I am getting resistance from everywhere which is something I am sure everyone on this forum has experienced. However, I do look forward to the day when I can go back to some semblance of the quality of life I used to have and go on this forum and be as supportive and helpful to others as you all have been to me.

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> > > > > > > > > Today, I am going out to shop for low salicylate foods. I have a

> >question though about cleaning products. Could my bed linens be causing me to

> >wake up every night with respiratory issues? Or am I reacting to the foods I am

> >eating as I have not completely started the low salicyate diet? I must say I am

> >sick and tired of being sick and tired and this is just the beginning. 2 more

> >questions..., (1)what supplements can "we" take in order to maintain somewhat of

> >a balanced diet? (2)can everyone start posting meal plans that have worked for

> >them so we can start getting some variety? Thanks, Rob.

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