My nose is pinched shut inside. Is this sinusitis?

[Cheryl M]

(Caution: descriptions of snot await)

Two and a half years ago I was exhausted after a shopping trip so collapsed and slept for a few hours. When I woke up my nasal mucosa had ceased to work. They have never worked properly since then.

My nose is completely dry inside almost all the time. When I eat a curry a lot of very thin liquid snot gushes out but as soon as I've finished my nose dries up again. My sense of smell has been quite significantly affected. Doctors who have shone a light up it have grudgingly conceded, "It's very inflamed inside." So far they've prescribed ephedrine, two types of steroids and saline spray. Nothing has had any effect except that after taking steroids + saline I have noticed blood on the tissue after wiping my nose.

I had the initial blood tests for Sjögren's done (because genitalia are dry, plus mouth and eyes to some extent) but they came back normal, though my GPs are still investigating.

I can't breathe properly because my nose feels as if it is pinched shut on the inside with a clothespeg (clothespin). One nostril hisses like an aerosol can, the other groans like a vacuum cleaner and neither admits very much air. (This is called nasal congestion, apparently.) I have been researching this on the web and think it might be sinusitis, but it has been going on for years now and I never get infections (with pus discharge/swelling/pain) in that area, and the Internet keeps telling me sinusitis is usually temporary and caused by infection...

Also the saline instructions say to spray up one nostril and allow to flow out through the other, and it is impossible to get water to flow from one nostril to the other.

I've been diagnosed with "benign" hypermobility plus collapsed lung, hernia and maybe vaginal stenosis, and my theory at the moment is that all my soft tissues are collapsing, my sinuses among them.

Is this sinusitis, d'you think? Should I try to get my GP to refer me to an ENT? Would they do anything useful?

 

[jesse's mom]

I would try and go see a ENT specialist.

There is a product called Ayr that helps with dry nose also I linked it for you HERE.
I hope this is some help.

 

[Cheryl M]

Thank you. I'm a little apprehensive about that because when this started happening I moisturised the inside of my nose with lipbalm (I know, that doesn't sound sensible in retrospect!). I woke up choking because the lipbalm had migrated into my lung. (Hint to other forum users: don't put oil-based products up your nose.)

The stronger steroids haven't made any difference so I suppose I'll have to push to see an ENT next time I see the GP. Thanks for the advice.

 

[jesse's mom]

@Cheryl M did you check out the link to the water based product AYR?

 

[Cheryl M]

Yes, thank you! I'm sure it'll be perfectly safe, I'm just fed up of treating the symptom and not the cause by sticking things up my nose.

 

[jesse's mom]

I hear you, and the way you said that was funny! I appreciate a sense of humor!

 

[ukxmrv]

I had a CT scan of my sinus area and an infection was eating it's way through there. Part of the sinus area had collapsed and It was badly inflamed. There had been a mixture of a silent infection with some facial pain or an obvious active infection with pus blood etc over many years.

My GP did not "believe" that there was such a thing as chronic sinusitis and had refused to send me to a ENT.

My ENT now uses a camera on a tube which goes up the nose to see what is happening rather than a scan each time.

The best things for me have been antibiotics (Docycycline works best for short periods) or some sort of pump with saline and tea tree. However, you have said that when you use saline it won't flow out of the other nostril and it may be that even with the forceful chug, chug of the pump it still won't flow and it could cause damage somewhere.

http://www.hydromedonline.com/hp_landing.html

or a simpler one for when I can't leave my bed

https://www.chemist.co.uk/neilmed-s...u-xVQa_H9bVdpuqDRW3bMG5HP95gR8nxoCi7YQAvD_BwE

My concern would be that no one has done any further investigation other than the light and if was in your position I'd go and see the ENT for a scan if possible.

 

[Cheryl M]

Ack!! I'm so sorry you had to go through that, it sounds horrible (and has reminded me of that woman who accidentally killed herself recently by filling the neti pot with tap water that contained a brain-eating amoeba. So I suppose it could all be worse).

One problem I have is that the saline spray says to clean the nozzle with soapy water every time I use it, but I often don't have the energy to do so.

Sounds as if I need to push for a trip to the ENT - will do, but I get the feeling my clinic finds me a nuisance already.

 

[jesse's mom]

Hope you are making strides for a referral!

 

[Cheryl M]

Thanks to everyone who was so polite and helpful. I requested an appointment with an ENT and now have one for July. Sigh.

The GP prescribed an antihistamine (cetirizine) which works differently from mirtazapine (which I am taking already and which is strongly antihistaminic but apparently not in the right way). It makes my nose run quite a lot although the mucous membranes still don't function the way they used to. However, the inside part is still pinched shut so I'll just have to wheeze for breath till July. I think it also makes me irritable.

 

[Fogbuster]

Thanks to everyone who was so polite and helpful. I requested an appointment with an ENT and now have one for July. Sigh.

The GP prescribed an antihistamine (cetirizine) which works differently from mirtazapine (which I am taking already and which is strongly antihistaminic but apparently not in the right way). It makes my nose run quite a lot although the mucous membranes still don't function the way they used to. However, the inside part is still pinched shut so I'll just have to wheeze for breath till July. I think it also makes me irritable.

Hey Cheryl, you described this sinusitis feeling very well, this is exactly what it feels like for me too!

How did your appointment go with the ENT specialist? Did you find any relief with your nasal congestion?

 

[Rufous McKinney]

I can't breathe properly because my nose feels as if it is pinched shut on the inside with a clothespeg (clothespin)

A version of this happens to me pretty much daily during Run Down Arrival hour...I feel it especially if I lay down. Clothespin pinching my nose closed...I feel the clothespin arrive.

My nose is mostly very dry...my eyes are watering constantly so that goes into the nose but nothing much else does. So this feels like tissue is inflammed...like back towards the adenoids or something...only mine aren't there since i was ten.

Since other things in this general area are swollen...angiodema type stuff...I would not personally treat this as an antibiotic issue at all. But thats my version. How far away is the brain stem, the eyes, the palette, from the sinuses...no its all nearby. I suspect Mast Cells.

 

[leela]

Have you considered trying nasya oil? The best one in my opinion (if you're in the US) is from Banyan Botanicals:
https://www.banyanbotanicals.com/nasya-oil-7/

I find it exceedingly helpful, as I also have dry, inflamed nasal passages, as well as very tiny ones.
This stuff is a little miracle for me, and can actually help my mind brighten a bit into the bargain!

 

[Cheryl M]

Hello, all! I have seen two ENTs now due to some pretty terrible communication within the NHS, which sent me to an NHS ENT despite the fact I'd already seen a private one. Both of them put the camera up my nose but unfortunately neither found anything useful; when I asked the private one if I would ever hey my pre-2016 nasal function back he said matter-of-factly that he thought I wouldn't. The second one ordered some allergy tests which will be done next year.

I've heard about MCAS now and Breakspear are testing for it. It does seem to fit with some of the weirder symptoms like gasping and choking when there's a strong smell. Plus I got better on pregabalin which apparently might be connected?

I forgot to mention the inability to breathe through my nose gets worse when I crash (as Rufous McKinney says) or when I've had CNS depressants like alcohol.

 

[Cheryl M]

Update.

I have been waking up at night for many years now gasping for breath and with my heart beating like crazy. Sometimes I wake up covered in drool from trying to sleep with my mouth open (because I can't breathe through my nose). I was referred to cardiology partly because of this problem. Obviously, being an ME patient (and having progressive memory loss) I am tired and sleepy all the time, experience cognitive dysfunction and am often bad-tempered.

Recently I read about sleep apnoea and realised it fitted the symptoms. The tiredness and cognitive problems I experience during the day would be exacerbated by lack of sleep caused by waking up frequently during the night. Naturally I would wake up terrified and with my heart pounding if I were unable to breathe (the local clinic predictably claimed this was anxiety).

I asked my doctor about sleep apnoea and she basically shrugged and said, "The only way to confirm sleep apnoea is with a referral and a sleep test, but you can buy various products over the counter that you can try out if you want." I bought a mandibular advancement device, which sadly was unusable because it was so uncomfortable, and nasal strips. (These made it significantly easier to breathe; it's a pity I can't wear them all day...) I'm going to try silicone nasal inserts next.

I can't believe I told the NHS "I can't breathe through my nose" over THREE YEARS AGO and they didn't tell me about sleep apnoea despite my reporting many of its symptoms. It never occurred to me to buy products OTC because, like an idiot, I assumed the NHS were handling the situation. They haven't saved any money by falling to investigate this; in fact, the referral to cardiology etc has probably COST them money.

So, next... If my doctor agrees to refer me for a sleep test I assume it'll take months, so it's probably better to go private (again). Then perhaps I'll get a CPAP machine to help me breathe at night and the temptation will be to use that all day as well...

 

[Rufous McKinney]

It is probably a better idea to just try out various sleep apnea methods and see if they help...like your doing.

I doubt I would ever go to sleep, if I was in a sleep lab.

I never slept the whole night before my husband's surgery. And I took pills.
\

The thing I just recently noticed- the pinched close nose feeilng is often stronger if I lay down flat with my head back. This is suggesting perhaps some of my neck weakness is on this back side.

I'm a side sleeper. Virtually never fall asleep until I get into that position. And then I rather hold my own jaw so it takes some of the tension off (my tense jaw muscles) and seem to breathe thru my nose, mostly.

 

[Cheryl M]

Thanks, but it shouldn't be hard to get to sleep because I take mirtazapine which knocks me straight out.