Does anyone have any suggestions for nasal congestion & runniness?

[Scotty81]

I'm posting this question here because it could have been posted under several sections of this site, but then the responses might have been more limited My 20 something daughter has been diagnosed with CFS, but also POTS, Sjogren's Syndrome, and mast cell activation disorder. She is also hypermobile, although she doesn't score high on the Beighton scale. She is also allergic to many substances.

For many years, her nose has been both simultaneously stuffy and runny. Although this is not her main symptom, it is particularly bothersome. So, she's looking to see if there's anything that may help.

Medications she's tried i(not all at the same time) for allergies and mast cell include:
Afrin
Allegra (regular & double dose)
Azelastine Nasal Spray
Benadryl (regular & double dose)
Claritin
Clemastine 1.34 mg & 2.68 mg doses
Hydroxyzine
Nasalcrom Nasal Spray
Nasacort Nasal Spray
Nasonex Nasal Spray
NeilMed Nasal Rinse
Netti pot Nasal Rinse
Pepcid
Rhinocort Nasal Spray
Singulair
Sublingual Immunotherapy Drops
Xlear Nasal Spray

Meds she's just starting:
Xolair

Of all the above, one of the only things that provides relief is Afrin. The downside is that you can only take it for 3 days in a row; otherwise, you risk getting a rebound effect. She's only tried this a few times over the years, but every time she tries it, she get much symptom improvement!

The NeilMed nasal rinse also works, but after doing this for several days, she always gets nosebleeds. She also gets nosebleeds after several days on any of the other nasal sprays, and since those sprays don't help that much anyway, it's not worth the side effects.

Conversely, although her regular regimen of allergy meds possibly helps her from getting infections, they do nothing to help with nasal symptoms.

If these symptoms are due to POTS, then it is possible that all the meds for allergies and mast cell won't help. If her symptoms are due to mast cell, then it is possible that Xolair might help. If they are due to "stretchy veins" from being hypermobile, I don't think any of the above would help.

The interesting thing about the Azelastine is that it belongs to a class of drugs called vasoconstrictors. So, if she has nasal symptoms due to a lack of vasoconstriction, the symptoms could be due to POTS or hypermobility.

Thinking broadly and freely, does anyone have any suggestions for other things to try?

Many thanks in advance!

 

[Rooney]

FLONASE nasal spray twice a day should help. It sounds like allergy testing Would be useful, if possible.
I’ve had Pots for many years, but diagnosed with allergies and nasal symptoms only recently.

 

[Wolfcub]

It might be worth a short experimentation to cut out all dairy, and eggs. Possibly? If there is no improvement or difference noticed then that might not be relevant. But it's worth a try.

 

[Judee]

Small doses of b6 and zinc taken together help my Mom's nose dry up and unplug within about 10 minutes. I think it is because those nutrients are needed for the body to make Daosin an enzyme that breaks down histamine in the gut.

Another thing we used to use a lot was a mixture of Brigham tea (herbal sudafed) and Nettle. That worked very well too but the Brigham tea can raise bp and my Mom has trouble with high bp so we don't use that one as often. Also it has become more difficult to purchase Brigham tea. A lot of companies like Nature's Way that used to sell it stopped but you can still find the dried plant on ebay like this. I was going to grind it up but we found that if we just put a twig or two of it in hot water to make a tea that helps as well.

My copy of Prescription for Nutritional Healing says that Nettle helps with "hay fever and other allergic disorders" so that's probably why we combined the two though, I can't remember if that was the reason.

I also read a comment posted on a blog that a women's daughter had the same issue and they found if she put 1/4 tsp of salt (see edit below) underneath her tongue that her nose cleared up very shortly afterward. My Mom has tried this once and it did seem to work but again we have to be careful with her bp.

Anyway, I hope your poor daughter can get some relief. My mom has a horrible time with this. We've come to believe that she has histamine intolerance issues.

I agree with @Wolfcub. Eliminating my allergy foods cleared up this issue for me a long time ago but I think my Mom has more issues than I do. You might want to look at the things that cause histamine intolerance and see if those tend to trigger this for your daughter as well.

Edit: Oops, I found that post and the salt under the tongue directions are different than I remembered. I'll try to update this by attaching a pic of the post.

Edit #2: Here is the site. It's the 9th comment down by someone named KY.

 

[Scotty81]

It might be worth a short experimentation to cut out all dairy, and eggs. Possibly? If there is no improvement or difference noticed then that might not be relevant. But it's worth a try.

She's already cut out eggs since they upset her stomach. She's already cut out dairy too, with no positive results. She's off dairy, with the exception of occasional cheese. So, unfortunately, no positive results, but it was an excellent suggestion.

 

[Judee]

One more: my allergist used to recommend Alka-Seltzer Gold like this here. It seemed to help some but not that much so we didn't keep buying it.

 

[Hip]

Two supplements that I find reduce my bunged-up nasal-congestion are N-acetyl-glucosamine and Saccharomyces boulardii. Bacterial probiotics also help.

I think nasal inflammation may be behind the bunged-up feeling, and these supplements are anti-inflammatory.

I've also found that the regular transdermal magnesium cream treatment for ME/CFS (which provides much higher doses of magnesium than you can obtain orally) helps clear nasal and sinus congestion.

 

[godlovesatrier]

@Hip I've got a chest infection at present - what dose do you normally take the NAG at? I'm also suffering with severe asthma so anything to help with both.

I would suggest Andrographis but it will make asthma worse and she is probably highly allergic to it. Really you need some strong alternative anti inflamatories and maybe something that dries out the mucous. But I am struggling think of anything I take that's strong enough to do that apart from Andrographis.

 

[Hip]

what dose do you normally take the NAG at?

Around one or two 700 mg capsules.

 

[BeADocToGoTo1]

A few questions to hopefully trigger some ideas:

• Has she looked at any other possible insults to the body through skin, air, etc.? This would include things like air quality, mold or other fumes in the house, bedding and clothing materials, perfumes, wipes, sanitary products, make-up, toothpaste, soaps, lotions & potions, home cleaning supplies, dishwashing liquid, eye drops, shampoos, washing detergent, air fresheners?
• Any plastic exposure through cutlery, kitchen utensils, plates, cups, food and drink storage containers, water boiler, ice trays, water bottles, water filter containers, etc.?
• Has her house been tested for air quality, mold, fumes?
• Has her heater/AC unit been checked for issues and mold, and has the filter been replaced?
• How is the water quality that is used for bathing and drinking? Does it include chlorine, fluoride, chloramines, ammonia? Any filtration used, and if so what type?
• Has your daughter kept an honest food and drink diary with absolutely everything in it?
• Has she had any nutrient testing such as the Genova Diagnostics FMV or Great Plain Lab Organic Acid Test? These are incrediblly helpful.
• How is her stool, i.e. softness, stickiness, yellower? Any comprehensive stool tests done?
• What is her HbA1c fasted?
• What type of food does she eat?
• Has she tried a reset diet for a few months?
• Is she still eating food and drinks from restaurants or cafes?
• When she cut out dairy, is she being really careful about ingredients in all products.? If she does a dairy reset, she should try it absolutely 100% and for at least 4-6 weeks. E.g., even a little butter used during cooking in a restaurant could cause a setback. and lactose or dairy is used as an ingredient in many packaged goods. A bit of cheese can set you back completely again. Reintroducing dairy after the reset is best done in stages to see if any of the following by itself cause issues: lactose, caseine, whey.
• Does she suffer from acid reflux or silent reflux?
• Has her stomach acid level been checked if it is too low?
• Has any form of malabsorption been tested for? SIBO, Candida overgrowth, EPI, gallbladder, intestinal permeability (leaky gut), etc.?
• Does she smoke or vape? Use alcohol? Sodas? Juices? Milk?

 

[Sushi]

The nasal probiotic Nasobiotex helps me tremendously. I only need to use it about once a week. https://forums.phoenixrising.me/threads/what-is-your-favorite-probiotic.56252/page-2#post-953292

 

[Scotty81]

FLONASE nasal spray twice a day should help. It sounds like allergy testing Would be useful, if possible.
I’ve had Pots for many years, but diagnosed with allergies and nasal symptoms only recently.

My daughter has tried Nasacort (which is a similar product). Unfortunately, the Nasacort didn't help and she got nosebleeds from it. I myself once tried Flonase. I don't know if they changed the formulation, but when i tried it, it had this annoying floral smell and it stung the throat from dripping into it. My daughter was diagnosed with allergies many years ago, and has seen allergists ever since. One of the allergists noted that some people with allergies can have these symptoms, and they can be hard to eliminate.

 

[Scotty81]

Hi @Judee, thanks for the multiple tips. She's already on B6 and zinc. I didn't realize that those nutrients help break down histamine though; that's interesting. She hasn't heard of (or tried) Brigham tea, so that's something to try. I also appreciate your other suggestions about Nettle, etc. As far as salt goes, she salts her food heavily (due to POTS), although she's never put some UNDER her tongue to try, as far as I know. Finally, I think the Alka-Seltzer would make her feel more bloated than she already feels.

 

[Scotty81]

Two supplements that I find reduce my bunged-up nasal-congestion are N-acetyl-glucosamine and Saccharomyces boulardii. Bacterial probiotics also help.

I think nasal inflammation may be behind the bunged-up feeling, and these supplements are anti-inflammatory.

I've also found that the regular transdermal magnesium cream treatment for ME/CFS (which provides much higher doses of magnesium than you can obtain orally) helps clear nasal and sinus congestion.

@Hip, it's interesting that you mention the above. Although she has been quite symptomatic since 2011, it's only been in the last couple of years that I can recall that she's had this added symptom of nasal congestion. She has tried all sorts of probiotics, but they have not improved her CFS symptoms, nor her main GI symptoms. Since she discontinued them a couple of years ago, it's possible that they were doing something beneficial. I'm aware of transdermal magnesium cream to help with aches, pains and provide overall magnesium goodness, but I wasn't aware that one of its benefits was to clear up congestion. I assume that this form of magnesium won't provoke GI symptoms that high doses of some oral magnesium sups can provoke.

 

[Scotty81]

Hi @BeADocToGoTo1 - you've certainly noted a lot of environmental and dietary factors to consider. Many things are negative, but she is positive for a few items. Notable positive ones include:
-the use of plastic water bottles
-we probably have several minerals in the bathing water, but we haven't installed filters in the showers yet
-she tested equivocal for SIBO and was on an herbal antibiotic for several months. Her equivocal level decreased to a lower equivocal level, but without symptom improvement though.

She has done many of the tests you recommended though.

 

[ahmo]

I have mild mast cell issues, and histamine probs. I've found rutin and royal jelly work. Royal jelly daily, rutin if I'm having a flare. Also, When I was having big time histamine issues, I soaked my feet in footbath w/ calcium and Vit C, which help draw out histamine. good luck.

 

[Scotty81]

The nasal probiotic Nasobiotex helps me tremendously. I only need to use it about once a week. https://forums.phoenixrising.me/threads/what-is-your-favorite-probiotic.56252/page-2#post-953292

Hi @Sushi - thanks for your reply. I had no idea there was such a thing as a nasal probiotic! I looked this up on Amazon and saw some positive reviews. When my daughter was doing NeilMed every day, she did get nosebleeds. But, if you do it only once per week, then I would assume the chance of nosebleeds would lessen considerably.

 

[Sushi]

Hi @Sushi - thanks for your reply. I had no idea there was such a thing as a nasal probiotic! I looked this up on Amazon and saw some positive reviews. When my daughter was doing NeilMed every day, she did get nosebleeds. But, if you do it only once per week, then I would assume the chance of nosebleeds would lessen considerably.

I have had chronic sinus problems for most of my life and this is the only thing that has made such a significant difference. I have not noticed any irritation. You use an absolutely tiny amount and not as a nasal wash but rather by dipping a Q tip in a few drops of water mixed with the probiotic and “painting” the inside of the nasal passages with it. It works very fast.

 

[Avena]

@Scotty81
Sodium Cromoglycate is the only thing that works for my sinuses/nose. It is a kind of allergy medication that is able to calm the mast cells before reacting. Most types only works after an reaction is already precent.

Quercetin is a natural alternative. Recommend this blog for more on that.

 

[Judee]

Regarding Nasobitex L. Sakei Probiotic powder, Webdog did an extensive write-up on his experience with it here on the Science for ME site. I didn't read the full thread. I just went down to #17 where he gives his full review and tips on how he uses it.

Edit: skimming down the page, I notice he seems to answer people questions too with additional info so I'll go back and finish the thread later to get more info.