Non-Allergic Rhinitis

Researching ME/CFS has been hard, in part, because there isn't always "obvious" areas to look and the symptoms are often global.

I'm proposing an area of research that might be of interest is non-allergic rhinitis. I have this in chronic, un-remitting form not caused by allergies, and which accompanied the onset of my ME/CFS. There is one smallish study by Baraniuk that found 46% of patients have non-allergic rhinitis.

I've noticed many patients with similar problems on the forums. And I think, in part, this adds to the patient's perception of an ongoing "flu" or immunological pathology. After all, fatigue and sinus congestion are what we think of most when we think of the flu. However, there is also research that neurological mechanisms can cause some forms non-allergic rhinits.

So, it seems to be like an interesting and possible fruitful way to find tangible research progress as Braniuk says,

I've never seen any research following this - a place in the body where you can actually see something is tangible wrong, and the mechanisms defunct. Biopsies can be made (mast cells, histamine, eusonophils, cytokines etc.). Receptors profiled with medications like lidocaine and capsaicin.

I might be interested in trying to get researches involved in this topic if others feel the same way. For simplicity, I'd like to keep this thread about the theory and population impacts of rhinitis rather than personal experience. I will make this thread on PR as well, when I have recovered some energy

Continuations;

There are 7 classical NARs, but a new one emerging is autonomic NAR (also called vasomotor rhinitis). This is a recent study on it.

I actually disagree with the authors speculation that GERD causes it, since I have adressed that symptom well. I think it's more likely autonomic dysfunction causes both GERD and NAR.

So it may be that NAR is a symptom of autonomic dysfunction in those with ME/CFS. Would this make it redundant to study? Or would it offer greating understanding to the autonomic features of ME/CFS?

 

If others agree, advocacy might be a better place to hold this thread? I don't know tbh.

 

I’d really like to discuss non-allergic rhinitis as well, as it is my daughter’s most persistent symptom. I think the immunological sub-forum is not the best place though, and believe the neurological and autonomic sub-forum would be more appropriate. My theory on non-allergic rhinitis being a symptom of autonomic dysfunction is based on its response to only one medication - alpha adrenergic receptor agonist xylometazoline. I think this is a big clue as to its cause. I’m not including vasomotor rhinitis in this, as I think this is different from the congested rhinitis in ME/CFS.

Really interested in hearing more from others.

 

Post-nasal drip (presumably rhinitis) has always been and remains an excellent sign-post to my current physical state.

On better days its a small amount of clear phlegm present in the mornings. PEM states will increase quantity. At times of relapse (over-exerting constantly) it'll progress to thicker, green phlegm. At my worst it can contain blood. No other upper respiratory infection symptoms present to blame it on.

Removing dairy from my diet and taking daily anti-histamines have stopped the daily occurrence, now it just happens with PEM.

 

To some extent I agree, except broadly some NAR can be immunological, just not allergic. It's not clear what exactly is causing it in ME/CFS. I also agree it may be driven by autonomic dysfunction. Afrin is indeed a potent vasocontrictor, but it would be effective for congestion doesn't really help understand the cause of the congestion in the first place.

 

You may also wish to read my edit to the initial post talking about autonomic NAR.

For all NARs, a combination of Azelastine and a steriod spray are often helpful. Their affects are additive. Azelastine in particular seems to be the most effective despite it being primarily an antihistimine. The combination has been the only thing to talk the edge off for me, neither did anything alone interestingly enough. Ipratropium Bromide, an anticholinergic, has also been made into a nasal spray and is said to help with the symptom of rhinorrea in NAR, but not congestion. Capsaicin nasal sprays have also been proposed.

 

That's interesting. Baraniuk found I believe, exercise induced POTS in some ME/CFS patients. So it may be autonomic dysfunction is an aspect of PEM, and contributes to this symptom in you.

 

Yes I'd agree with that. My autonomic function clearly deteriorates with over-exertion, poor sleep, infection and most other stressors. Objectively its quite clear from 24/7 tracking of heart rate ranges (postural & sleeping), blood pressure and heart rate variability, along with a slew of more subjective issues. I have autonomic small fibre neuropathy confirmed by sympathetic microneurography, so would imagine it all ties in.

 

This is one of my main symptoms. It is this feeling of stuffyness and pressure around my nose that just won't go away. I've never had an allergy in my life and all allergy tests I've done are negative. CT scan showed no sinusitis. Nasal sprays do not work. It is much worse during crashes and correlates to other symptoms, such as dizziness and fatigue.

The study that you posted is fascinating. ANS dysfunction causing rhinitis... I would have never thought to make that connection. And the other one too, 46% is a pretty high number. That number is probably much lower in controls, so it was not a coincidence for sure. It actually makes sense why it happens in CFS, considering dysautonomia is such a major problem for pwme's.

What is even more fascinating is that I've read several reports of CCI sufferers having this exact same symptom and it disappearing during / after cervical traction!

 

I know you say you don't want to focus on personal experience but...

I have been struggling with this as an over riding symptom for about a year now. My ME/CFS is 7 years duration and I don't remember noticing it before. However I have had years of throat/ear niggles preceding my ME. A GP once suggested a balloon one blows up with the nose to adjust the pressure in the ear. I was a smoker for years so always just put it down to that.

I have been toying with posting to find out if anybody else suffers with this. My nose isn't really blocked, although I do feel the need to blow it. It's a feeling of congestion and extra fluid/pressure behind my nose and through my ears. It seems to worsen after activity and it is now becoming evident as a clear symptom of my PEM. I don't think I have ever seen it mentioned as such though!

I noticed sometime ago that my ears felt as if they were filling up and popping halfway through my daily dog walk. I felt as if I couldn't even share this experience as why on earth would a gentle walk change the pressure/fluid in my ear? My PEM seems to have changed over this last year. There is a feeling of extra fluid all over my body which causes pain. There is no outward sign of extra fluid. This feeling is there most of the time but worsens during PEM.

ETA- this has coincided with severe neck pain and stiffness.

I would be very interested to know how many other people experience this and in any research.

I struggle following the research and find the human responses to the research much easier to follow so apologies for responding in this way!

 

I have exactly the same! Especially the ear feeling. Ear pressure is often an indicator of neck problems. Saw this being reported quite often on a spine forum.

 

Looks like I missed the initial thread but I've had that for years as well, or something like it anyway. It's annoying but still unmistakable. Runny nose is especially when I eat but it has little to do with spiciness of heat, it happens when eating cold food as well. Still a link, eating soup is the worst, but it's not necessary.

It's one of those dozens of small things I'd never mention in a medical consult because there are so damn many and even though some may be relevant we're faced with the catch-22 that mentioning too many symptoms that get dismissed add up to a conclusion of fake illness in nearly every physician out there. There are probably a few signs and symptoms like that that are near universal and completely missed just because we don't bother mentioning them.

 

I have been diagnosed with non-allergic rhinitis. I am to do sinus rinses followed by a nasal steroid twice a day. If I don't, or if I have a cold virus, I can get a lot of vertigo, which ain't fun.
I also had shortness of breath due to the bronchi reacting to the post nasal drip, I suppose.

The non-allergic rhinitis does seem to influence my tinnitus some. Aerobic exercise is great for clearing the sinuses (too bad about that) as well as spicy food.

I have to do the rinses and steroid religiously or else I am dizzy for several days until duh, I figure it out. I had this well before fibro and exhaustion (that may or may not be part of ME).

 

Ah yes, the pleasure of trying to eat with a fork in one hand and a tissue in the other, I know all about that. And no, I have never mentioned it to a doctor either, for the same reasons.

Google found this thing called gustatory rhinitis (see below). For me it happens with all foods, not just hot and spicy ones, every time I eat. Weirdly it doesn't happen with hot drinks. And when not eating my nose is chronically congested.

I also have plenty of other symptoms that indicate autonomic nervous system dysfunction so the concept of autonomic NAR strikes me as not impossible.

The mention of "stimulation of trigeminal sensory nerve endings" in the abstract below is interesting because every now and then I get the sneezes for half a day and this is always followed by a coldsore, which I can get on lips, nostrils and ears, all areas connected to the trigeminal nerve. Some connection there maybe? Like the herpes virus has permanently irritated the trigeminal nerve (and maybe the vagal nerve, too, cf VanElzakker) so it now overreacts to stimulation by eating?

https://www.ncbi.nlm.nih.gov/pubmed/20502728 (abstract only)
Rhinology 2010: Gustatory rhinitis, Jovancevic et al.

 

I believe herpes simplex lives on nerves and is reactivated by various triggers (including, for me, white hot anger). That an original infection is later reactivated is not contentious, because of course there is a test to prove it.

 

Uh. Now that you mention it me neither. Soup? Niagara nose. Coffee? All good.

Weird.

 

Have you tried the nasal spray combination in post #6? It is the combo recommended by UpToDate.

Could you provide references for that? I've heard Jennifer Brea mention that, but it's not something I've come across before.

 

The first step is to see and ENT. The ear issue sounds like eustachian tube dysfunction. They could do a CT scan of the head to see if fluid is accumulating somewhere.

 

@Ravn @rvallee

I do not have gustory rhinitis, mine is constant. The anti-cholinergic spray is suppose to be quite good at rhinorrea, the production of mucus, rather than congestion, and so might be worth trying. Although it is quite drying apparently.

That is an intersting reference to the trig nerve. Perhaps a temporary nerve block could be used to test if indeed was the culprit?

 

It was someone on the cfs reddit, don't remember his username, but he made a thread about cervical traction.