like a fair few CLLers I suffer with sinus issues and mucus build up almost constantly.
How can I possibly produce this much snot and gunk, worse of course in the cold weather.Came across this recently, has anyone tried it and if so did it help?
Appreciate that it may well be snake oil as anything that seems too good to be true probably is!Any views anyone?
thanksShooey
Apparently this product is commonly known as Tiger Milk Mushroom. This is a slightly older piece of research but nevertheless useful. Frankly I have no idea whether this fungus works but I’m afraid I tend to shy away from these products because most results are anecdotal and not evidence based.
ncbi.nlm.nih.gov/pmc/articl...
Newdawn
Shooey,
Have you seen anyone at ENT ? I suffered for years but sterimar, Avamys and a prophylactic prescription for Azithromiacin keep my problems at bay 🤞
Good luck it’s very miserable, I sympathise.
Colette
Hi Colette
Hope you’re well?
yes I have got an ENT appt in May so will see what they say.
Thanks for the tips, I do use Neilmed nasal wash and a spray which give short term relief.
Let’s see what they come up with in May.
Shooey
That’s good.
I know lot of patients like nelmed but personally I prefer the sterimar because it’s in a sealed container and I feel more comfortable with that , but certainly they used it in one of my hospital stays.
Do you sleep with your head raised at night ? And for some reason, since Christmas, I have been drinking hot water with fresh ginger, lemon and honey and that seems to help. Certainly with sleeping.
Colette
Can’t say I enjoy using Neilmed so might try Sterimar and see how I get on.
I’m a three pillow gal and find that I’m ok sleeping, it’s when I get up the floodgates open! I don’t think the central heating helps either.
I do have a daily fresh ginger in hot water, will try adding honey and lemon tomorrow.
Thanks again for the good advice
Shooey
You've reminded me of morning "Smoker's cough", which is caused by the cilia paralyzed by toxins from burnt tobacco, recovering overnight and delivering the accumulated mucus containing all the trapped toxins (including carcinogens), bacteria, viruses, fungal particles and dust back up into the throat. That's part of why smoking is dangerous to our health - by paralyzing our body's defensive mechanisms to keep our lungs health.
Yes, I remember that well, both my parents were quite heavy smokers, not pleasant!
Shooey
Many thanks for your reply and the link.
Going forward I will consider my mucus my friend, albeit an annoying one!
Shooey
Try a Neti pot. A neti pot is a container designed to rinse debris or mucus from your nasal cavity. You might use a neti pot to treat symptoms of nasal allergies, sinus problems or colds. If you choose to make your own saltwater solution, it's important to use bottled water that has been distilled or sterilized.
Thanks for that, sounds very similar to the Neilmed sinus rinse that I currently use but worth looking into
Shooey
Netipot can flush out the sinus canals. It does take a little practice to use, and you must use warm pre boiled water, and fine food grade salt. You can also use sterile saline fluid. Use it regularly until the pressure releases, then maintain the rinse once or twice a week. Don’t over use when you have returned to normal as the mucus lining actually is there to catch pathogens.
hi Shooey, I noticed you mention you use “short term sprays” sometimes. You might not be aware, but some short term sprays containing xylometazoline can cause “rebound” congestion if used more than three days.
“Symptoms of rebound congestion include long-term redness and swelling inside the nose and increased runny nose. If this occurs, stop using this medication and consult your doctor or pharmacist.”
The above is the warning off the leaflet in one pack of xyometaxoline .
I would go cold turkey and just stop short term solutions. I had unknown chronic sinusitis and they always made my nose worse. They do not prevent the symptoms you have except during a cold etc.
You are very likely to have an element of “postnatal drip”, where the lining of the nose and sinuses becomes irritated and inflamed and thickened, so that they produce far more mucus than normal, and it drips down the back of the throat.
Most ENT consultants would expect you to try a steroid nasal spray (like mrssmith above - avymys - fluticasone)before you see them. You might have done already. X You can buy the sprays over the counter in UK, and millions use them for hayfever which inflames the linings. It’s worth trying because otherwise the first thing they will likely recommend will be a steroid spray or drops!
They would usually be used for at least three months regularly to thin the lining out.
You are probably getting more “gunk” than normal, so the spray would thin the lining and make the lining thinner. The openings from the sinuses into the nose are tiny, so thickened linings often block them and increase the risk of sinusitis.
I would give it a go! They don’t have an instant effect like the temporary sprays but they will work usually!
If at any stage you get green pus, or raised temperature, or facial pain etc, then you need a course of antibiotics.
And I have a confession, after persistent coughing for weeks and weeks, and a horrid feeling of mucus at the back of my throat, I eventually bought a steroid nose spray about 5 days ago and found that it’s worked for my cough! Didn’t follow my own advice but it’s wonderful that it’s going! Lol! X
Good luck!
Haha, glad it’s working for you. The persistent cough is so annoying, mine seems to be exacerbated by the post nasal drip if I can’t catch it before it goes down my throat.
I certainly wasn’t aware of the rebound issues with some nasal sprays, I’m using Mometasone Furoate at the moment.
The inside of one nostril is quite red so maybe that’s what’s caused it. I may try a different spray to see if that makes any difference.
Thank you for taking the time to go into such detail, much appreciated.
Shooey
Shooey,
Just looked and Mometasone doesn’t contain xyometaxoline, and I have never used mine because my ENT surgeon suggested only using ‘ if all else fails ‘. So it might be too strong to start with. At the moment 🤞only using Sterimar occasionally.
Good luck
Keep them clean, always use boiled water or sterile saline. Very important! I’ve used one for years and suffered terribly from sinus infections.
Looks to be the same principle as the Neilmed rinse I use at the moment. I’ve been using bottled water but should maybe switch to boiled.
Agreed so that’s why I prefer the Sterimar because it’s in a pressurised container, and I got bored waiting for boiling water to cool. To quote Shirley Conran ‘ life is too short to stuff a mushroom ‘
Colette
Sprays are fine but don’t rinse like a neti pot. As long as you use them as directed, they are very safe and incredibly effective
Just an observation.Diet / nutrition
Vitamin A is the critically important vitamin, strongly associated with the health of our mucus membranes, including those of the eye.
Sinus issues, persistent and with no obvious cause..
1. Eliminate avoidable irritation, such as one acquaintances insistence for poking tissues up her nose..
..also, use an air filter device to clean the air
2. Consider your dietary (or via supplement) vitamin A intake.. and all symptoms of possible deficiency, of which sinus problems may be one.
Here I mean to emphasise vitamin A (retinol, retinyl esters, retinyl acetate), where 100g liver contains 7 days RDA, cod liver oil.. (dairy has some, a large egg has 8% RDA..
..as distinct from beta carotene, which has a low conversion rate to vitamin A, and a very low under in reduced health.
Deficiency is more likely if you have several symptoms (poor night vision or night blindness, odd artefacts of vision as regards bright lights, sensitivity to wind blowing on your eyes, dry or other skin issues), or, if you've suffered chronic fatigue, or, if you're vegetarian or vegan (more common - doesn't apply to all!)
I've witnessed whole families all using eye drops for dry eyes, and a vegan family with sinus trouble common, and friend amongst them, only recovering from 12 yrs CFS/ME after correcting vitamin A.
Thank you Shedman for the detailed information.
1. Guilty as charged I’m afraid! Will try and refrain from doing so in future. HEPA filter is on order.
2. Hadn’t even considered that a vitamin deficiency may have exacerbated the issues, I will ask at my next appointment if they can test for it. Afraid I can’t stomach liver but do consume quite a lot of dairy products. I eat very little meat and do suffer with dry eyes and skin (put that down to the wonderful British weather)
You’ve given me lots to think about and investigate, thanks again for taking the trouble to reply in such detail.
Shooey
NHS is guided to not test vitamin A levels.You could ask doctor to look at your vit A deficiency symptoms -good practise.. most Doctors just aren't looking for it, nor seeing it.
They may give you a pained "dr google?" look.
But you already have 2+ symptoms;
Dry eyes
Persistent sinus issues
Dry skin is a complicated thing
A simple supplement, one that you can quite safely take 2x daily, is Sainsbury's ACE+Selenium (a standard formula that is shown better than individual ingredients)
You could do a couple of months at 2x daily (with food usually best uptake), or you could go for 4-6 months at 1x daily..
See whether you feel improvement, then take it from there. There's a 1 month time lag to any symptomatic improvements when resolving deficiency.
Again, thank you!
I’m fortunate to have a great immunology team so at my next bloods in March I’ll ask if they would mind adding that on the bloods forms. They may not agree but it’s worth asking. They were very helpful last year in testing for allergies, all came back negative.
I’ll certainly give the ACE+Selenium a try, as you say it will take a while to show any improvement.
Off to do my Neilmed rinse now but thanks again Shedman.
Shooey
Excellent - and do keep us posted if they agree to test vitamin A, and with outcome.Testing makes much of the initial correction, of this stored vitamin, easy.. then just to adjust diet or supplement regime a tad.
Excellent - and do keep us posted if they agree to test vitamin A, and with outcome.Testing makes much of the initial correction, of this stored vitamin, easy.. then just to adjust diet or supplement regime a tad.
Dry eyes are also something I have under control. I can tell you my regime if you are interested. You sadly have got a collection.
Colette
Hi Colette
Not a collection I really want!
At the moment I use Hycosan Xtra as recommended by the optician but would of course be grateful to hear your regime.
Thanks
Shooey
So it’s Blepagel in the morning and Blepasol in the evening. They are both cleansers and our eyelids can get greasy. Hylo-Tear at bedtime. I was told that was the best time because our eyes move when we are asleep. This is quite light and some are rather’gloopy’. If I stop for a while I do notice. 🤞It’s just part of the routine like brushing my teeth.
Colette
try nelimed sinus rinse with or without pulmocort liquid added to it.
Immune Issues
sinus infection and nose bleeds.
Chronic Sinus Infection cause or contributor to CLL?
CLL and sleep issues
Stomach Issues
