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Nose Running
Hello:
Diagosed 8/22/22
My progression seems on the slow side. Since starting this journey my nose is running much of the time. I can sit for hours, such as watching TV, and the moment I get up it starts running and running. I blow my nose over and over. If I did not, it would leak out. The few times I have brought his up at clinic, they shake their heads and do not know.
Has anyone else had this problem and, if so, any relief?
Thanks, John
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19 Replies
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Joh-e-mosman,
The same thing is happening to me!! It has been non stop for over a year now. I kept thinking it was allergies but it never gets better. I don’t know where all this mucus comes from! I read somewhere that ALS causes more mucus, but I can’t recall the source. There is so much misinformation and unknowns when it comes to ALS, it is hard to find answers to some of these “little questions.” I’m curious to see what others have to say.
Amanda
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I experienced the same issue. In mid January 2024 I had a head cold with sinusitis. My primary care doctor prescribed Cefdinir along with a nasal spray (Fluticasone Propionate) which I took for 5 days. My nasal drip has improved by 90% in my estimation. It is only bothersome when I eat. The rest of the time I have no drip.
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I have that too for 14 years now. In the scheme of things, I consider it to be the least of my problems – – I carry a handkerchief with me at all times. And live with it. 🙂
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I agree Dagmar. This is a little thing in the grand scheme of life. It is interesting to learn that I’m not the only one.
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I brought the same thing up to my ALS team. I was told it is not ALS related.
It may be…. Never had this issue before.
Since we are often on a ventilator and have challenges breathing it is important.
Additionally, Hygiene becomes really important to us when the disease progresses . It’s one of the things we like to imagine we retain some control over.
Thanks for bringing the topic up.
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Has anyone gotten relief from the runny nose by using Claritin (loratadine)?
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When I’m sitting on the toilet, my nose goes crazy. Usually have to use 20-30 tissues. Then when I’m done and back on the Trilogy in my recliner. The only thing that explains it is my parasympathetic nerve system. No idea how to stop it. Sorry for all pALS going through this in addition to everything I we have to deal with.
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My ALS symptoms started five years ago, and my internist has told me for years that I have a postnasal drip. But only in the last six months have I experienced a runny nose at least half of the day/Evening. Since I have no use of my arms and hands, caring a handkerchief we’re blowing my own nose is not an option. I am seeing a new ENT doctor the end of this week, who I hope Will be able to recommend some effective remedy.if I learn anything useful I will pass it along. I am taking Radicava, but I’ve been doing so for nearly a year, so do not believe that it is responsible for the tremendous amount of mucus. I also have been taking Relyvrio, but again do not think it is responsible as I have been taking it for several years and the tremendous upsurge in postnasal drip is a very recent phenomenon.
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My nose runs when I eat—especially with apples. Not an allergy but I do have nasal polyps, which may contribute. I find a saline spray helps but it’s hard to use with weak hands. Flonase also helps to make breathing easier at night. But hand weakness is a problem with the applicator there too. I keep a tissue box available as often as possible but even then my weak hands make wiping difficult. Nose picking has become “a thing ,” I’m sorry to say.
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Prescription strength cough medicine that thinned down his mucus. My brother ended up taking this for a bad cough which I think is because he was really stuffed up. He never had this problem before getting ALS. It seemed to help him a lot. Hospice prescribed it to him finally. He passed in early January. It was about 20 months from onset of 1st ALS symptoms.
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Thanks everyone for your great replies. I certainly was hoping for a magic bullet, sigh. I have clinic in a few weeks and intend to bug them all about it, or at least something to somewhat dry it up. Stay safe out there, John
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Hello, you are not alone with your concern. My symptoms started 4 years ago and diagnosed in 2021. I have the same issue described with runny drippy nose that I notice after or during activity such as walking, eating and pretty much any activity. I do a lot of sniffling and use many tissues. I also discussed at my ALS clinic and they do not think it is ALS related since I don’t have other mucus issues.
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Hello
I have the same issue. My ENT prescribed Ipratropium spray 3-4 times daily. Seems to be helping.
John
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My husband also uses that spray, he thinks it’s helpful, says he can’t eat without using it first. It’s more on one side and drives him crazy. His MRI of brain last summer actually lit up an area of inflammation in the right sinus area (the worst side) and he feels it’s definitely ALS related.
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My husband uses ipratropium nasal spray too. His pulmonologist prescribed for chronic cough that could be postnasal drip related. Helps with postnasal drip and slows urge to cough, but not 100%
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New to the site. I’ve been monitoring but haven’t posted. Diagnosed with ALS in October of 2021. Upper extremities only so far, no use of arms or hands.
Also deal with huge nose issues/nose drip constantly. Currently taking Radicava and Riuzole. Thanks for the site.
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Don’t have that issue
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I correlate it with the increase of saliva. A parasympathetic system on overdrive.
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Thanks for all the responses. I have clinic next week and will push again about it but think it is probably an issue that is here to stay. Sigh…..
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