An ideas on how to fix this problem? nose is swelling haven't smelled anything in weeks can't breath out of it slim draining down throat in to stomach and chest taking my singulair advair flonase zertec and been taking eleve allergy sinus nothing is making it better my nose hurts bad
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Pain in the nose
- Thread starter anonymous
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Purplelungs
New member
Have you ever had sinus surgery? It maybe time to get your CF doc to recommend a ENT to look at it. Sometimes they can just do a strong irrigation. Other times surgery is required. CFers tend to get polyps in the nose that block off the opening in the sinuses, thus making the infected mucus stuck up there and everythign gets worse...makes you have headaches, sometimes swelling...if you are all back up in the sinuses, nothing is coming out (exculding the slim coming down)...like if you cant blow anything out...mucus keeps being made in the sinuses...if your openings are blocked, either by polyps or thick mucus,,,,,the new mucus forming has no where to go, gets infected and causes pressure on the sinuses...thats why headaches and swelling. If no meds are helping I say call the doc see what he wants to do. Maybe he has a strong antibotic that can help.
I had surg when I was a kid. Irrigation many times. Should have explained better a cf parent not a cf'er myself but have problems that go along with it. Allergy sinus lung gastro problems diabetes plus some other stuff. It seems the older I get the worse my health gets. But that is how it goes I guess. Got to say the taste in my throat from the draining is horrible. Thanks for the help
Carriers of cf genes have something like 36% chance of having chronic rhinosinusitis as opposed to the less than 15% chance that the general population has. Do you do salt water irrigation? 1 quart room temp sterile water, 2 tsps pickling salt, 1 tsp baking soda mixed well. Pour 1/2 in a bowl, use a bulb syringe and squirt it up the nose, alternating sides until you've used it all then repeat with the other 1/2 in the evening. AFter the nose stops draining, do your flonase (use it twice daily). You can also try afrin but only use it for 3 days. If all else fails, see if your dr will rx a good strong antibiotic for 3-6 wks. That's how we handle the chronic sinus problems in our house. Oh, one more thing, antihistamines like zyrtec can actually dry out the secretions making them thicker so they stick in the sinuses instead of draining. You maybe should try laying off any antihistamines for a week or two and see if that helps. Hope that helps. By the way, have you ever been sweat tested or genetic tested to make sure YOU don't have cf?
is it true that cf have growth in their nose? not all of them, i mean some of ye! cos i, myself have sightly long nose, thing is when i was kid my nose wasn't tat big, it was normal size. recently i was reading abt cf, in there it said cf some cause small growth in nose, not entire sure but wondering if any of ye know it? do ye have to have operation for it? or is it normal?
Purplelungs
New member
To the last poster...I have never heard that. All people have small noses as a kid...once you hit puberty everything grows as you know....so your nose probably just got bigger than you thought it should be around that time. I never heard of CFs noses growing more than they should. I do know there are polyps or a type of growthing INside the sinus cavities but they dont make the nose bigger. Interesting question though...
To the original poster....ok since your just a carrier you can still have some symptoms like the other poster said. My mom has symptoms: recurring bronchitus, sinus trouble, asthma......my brother is recently having recurring sinus problems as well (he has no cf). I even know some people that to my knowledge arent even carriers of the gene and have sinus problems, one even had to have surgery....of course i doubt they were ever tested for the gene since there is no reason for these people to....anyway not the point...My point is you dont have to have cf to have these sinus issues....lucky thing is without cf some of the time sinus problems are easier to treat. Also the other poster is right...dont know why i didnt think of this to begin with...anything drying up those sinuses can actually be making it worse....how? by not allowing the infected mucus drain but drying it in the sinuses, the infection stays there and infects the rest of the mucus that is made. This results in the sinuses getting full, also blocking off the openings in the sinuses, all the while your still making mucus up there and its still getting infected, and this can result in pressure making headaches...just like i said before....different reasons same result. I say you might just have to give up and call the doc....if nothing is working and its staying the same or getting worse give up and call...he can give you something or tell you something to do. There is no sense in going on feeling miserable.
Hope something works out for ya.
Amanda
To the original poster....ok since your just a carrier you can still have some symptoms like the other poster said. My mom has symptoms: recurring bronchitus, sinus trouble, asthma......my brother is recently having recurring sinus problems as well (he has no cf). I even know some people that to my knowledge arent even carriers of the gene and have sinus problems, one even had to have surgery....of course i doubt they were ever tested for the gene since there is no reason for these people to....anyway not the point...My point is you dont have to have cf to have these sinus issues....lucky thing is without cf some of the time sinus problems are easier to treat. Also the other poster is right...dont know why i didnt think of this to begin with...anything drying up those sinuses can actually be making it worse....how? by not allowing the infected mucus drain but drying it in the sinuses, the infection stays there and infects the rest of the mucus that is made. This results in the sinuses getting full, also blocking off the openings in the sinuses, all the while your still making mucus up there and its still getting infected, and this can result in pressure making headaches...just like i said before....different reasons same result. I say you might just have to give up and call the doc....if nothing is working and its staying the same or getting worse give up and call...he can give you something or tell you something to do. There is no sense in going on feeling miserable.
Hope something works out for ya.
Amanda
Mockingbird
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>is it true that cf have growth in their nose? not all of them, i mean some of ye! cos i, myself have sightly long nose, thing is when i was kid my nose wasn't tat big, it was normal size. recently i was reading abt cf, in there it said cf some cause small growth in nose, not entire sure but wondering if any of ye know it? do ye have to have operation for it? or is it normal?<hr></blockquote>
Um, I think that is talking about growth <i>inside</i> the nose, as in nasal polyps, and such. =-)
Um, I think that is talking about growth <i>inside</i> the nose, as in nasal polyps, and such. =-)
Huh I didn't know that my zyrtec could make the nose thing worse. My pulm always said that if I don't keep up on my meds that it makes my lungs worse. Can prednizone affect my nose to? Cause I take 50mg a day every other week. Never done a sweat test but was tested for the top 25 mutations and only had the delta508. Both of my kids have 2 copies of that gene. Thanks for the ideas and input. It has been bad for a while almost funny to see me do my breathing treatments since I can't breath out of my nose I have coughing fits worse then normal. I'm just hoping it hasn't dropped my pft's. That makes for an unhappy pulm dr. Kinda like the time I passed out trying to do my peak flow in the dr office.
2sickkids, I think it would be worth getting the full Ambry panel of genetics. If you have DF508, you could very well have another, less common gene which would explain your health problems. Getting treated properly could make a huge difference in your health. It only takes 2-3 wks to get the results back. I'd do it for your children. Other thing, on the zyrtec, YES, it most certainly can dry up the sinuses. Our ENT is insistent that our children ONLY use zyrtec or extendryl (an antihistamine/decongestant/anticholinergic) when they're having obvious allergy symptoms, CLEAR runny nose, itchy/watery eyes, etc. If they're congested, we drop zyrtec, use extendryl if we have to but just trying doubling up on nasal washes and nasonex, use an OTC decongestant like sudafed and sometimes afrin for no more than 3 days.
Oh, I forgot, one other thing. YES, prednisone can affect the nose. However, normally, if the dose is high enough (and I'd think 50 mg would be), it HELPS with the inflammation. Prendisone is an oral steroid that is used to treat inflammation. Since it's systemic, it goes everywhere (vs inhaled steroids which just target the lungs.) In fact, sometimes people are put on a long taper of pred specifically just for the inflammation in the sinuses. Have you ever had a biopsy of your cilia?