Earache / strange smell / tinnitus

Hello all,

I'm never quite sure if a symptom or symptom(s) are "part" of ME, or something else coincidental etc etc, but got a few newish ones that I'm wondering if anyone else has any experience of.

Basically an earache in my left ear, since around Oct 2022, present pretty much all of the time but intensity varies. With a sensation of pressure there as well, which also varies.
Around the same time, I started noticing a strange smell in my nose, hard to describe but a little bit singed, a little bit sour. Also there pretty much all of the time but varying intensity.
And then occasional random tinnitus which lasts for maybe 20/30 seconds, once or twice a week. Usually in my right ear, but more recently sometimes in my left ear as well.

I had a GP appointment a few weeks ago, they prescribed a nasal spray (fluticasone furoate), they said my nasal passages looked inflamed. That's about it. Nasal spray hasn't really done much.

Have just booked a follow-up appointment with GP on 3rd March as they mentioned something about referring to an ENT if the nasal spray didn't sort it all out.

Anyone else experienced any/all of those symptoms as "part of" or "separate from" their ME?


Thanks!

 

Have you had Covid? Ever since I had it I've had repeated bouts of weird smell and taste that have been different to anything I ever had before Covid. It's often a metallic smell or taste.

 

Anything to do with ME/CFS ? Possibly - allergy seems common in ME/CFS may be as an unrelated comorbidity but could be considered part of the larger parcel. Phantosmia and tinnitus as neurological symptoms might be an aspect of ME/CFS should it have neurological pathology but basically exclude common causes - simple allergy and/or infection of nose, Eustachian Tube, mid and inner ears before other considerations.

 

Have no idea whether or not this might help you, but I have had non-allergic rhinitis for years and use fluticasone daily for years, after nasal douches with boiled water (boiled for at least 5 min. with added salt and bicarbonate of soda) twice a day. The nasal rinses are essential, too, before the fluticasone application.

During colds, I use an over the counter nasal decongestant maybe two days in a row at the most, wait another 2-3 days and repeat. This seems to knock down the congestion (sinus pain, increased tinnitus). You can't use it more than 3 days in a row or you get rebound and worse congestion (so the instructions tell you).

 

The nasal sprays can sometimes take three or four weeks to start working. You have to be consistent about using them everyday.

 

As Trish says, it sounds as if you need to get it sorted out medically, not through advice here.
As a physician the combination of a bad smell and earache sounds like the possibility of sinus infection with otitis media. That needs more than just a nasal spray, which I rather susp[ect to be useless anyway.

If I was presented with someone with these symptoms I would get an ENT opinion straight away. In the meantime in the old days we would have had x-rays to look at sinus opacity, apart from doing some basic hearing tests and examining the ear drum with an otoscope.

 

It is not my job to say but I think it may be unhelpful for non-medical members to give opinions about this sort of thing that might lull people into a sense that they might get better with vitamins or something. The basic rule is always exclude infection first. Infectio0n can cause permanent damage.

I don't think these symptoms have anything to do with ME.

 

Early on, with ME in my 30's I would smell nice fragrances from flowers, but they all had a metallic smell. This lasted many years.

I have no idea if this was part of my ME or not. I have lots of allergies, so perhaps it was part of that. Who knows...

I echo others here who have said medical care is the way to go for a follow up.

Hope you get a resolution.

 

I have had these symptoms with my ME, they can be troubling at times and improve considerably with regular or intermittent use of Flixonase nasal spray prescribed by my GP.

For me, it is a seasonal allergy (occasionally a common virus) that then inflames and blocks my eustachian tube (the middle ear and creates popping in ear and mild ringing) I get mild ringing at other times (not to the degree of a diagnosis of tinnitus) and the clear running nose etc

(I also suspect, but don’t know, that some of the ringing I hear, most of the time when in PEM, may be due the central neurological effects of ME- but who knows the answer to that one….)

The strange smell, I get is usually a mild bacterial infection that follows the allergy, (mild yellow discharge when blowing nose) which I usually just wait to settle by my own immune system as usually too unwell with ME, to traipse across the city to see my GP (or bother them) for antibiotics for a self-limiting condition.

If it was very persistent and I had sinusitis symptoms (another outcome/infection from my ME past history), I would go see my GP for assessment as this can cause a variety of symptoms, that always disturb sleep and rest times.

edit for typos

 

I have had covid at least twice...

 

Sounds sensible, thanks.

 

Thanks @Jonathan Edwards and all for the suggestions and the encouragement to get it all checked out by the right people - a friend reminded me that as a musician, an organization called BAPAM might be able to get me an appt with a GP that would be longer & sooner than waiting for my next NHS GP appt.
I just spoke to BAPAM and now have a 45m zoom appt with a GP in 2 weeks (better than a 10m phone appt with my NHS GP in 4 weeks).. hopefully that will be helpful.

 

Interesting, that does sound very similar. Thanks for sharing. Yea none of it (atm) is so bad that it really stops me doing anything, but as a musician it's particularly annoying / concerning to have something going on with my ear when I'm working on music. And as it's all hung around for around 4 months now it seems reasonable to assume I might not be in the "it'll just go away by itself" phase...

 

I've had tinnitus since the onset of my ME 40-odd years ago. And I get what I call phantom smells occasionally which seem to be associated to periods when I have done more than normal.

 

Tinnitus can have associations with medication use:

Longitudinal Study of Analgesic Use and Risk of Incident Persistent Tinnitus

"Analgesics may influence auditory function and several mechanisms may underlie the potential ototoxicity of these medications, including alterations in cochlear blood flow and function, response to inflammation, susceptibility to oxidative damage, and neurotransmission along central auditory pathways.12,13,14,15,16 Frequent analgesic use has been associated with higher risk of hearing loss in men and women.17,18,19 While the association of high doses of aspirin and reversible tinnitus is well-recognized,20 the associations of typical doses of analgesic medications and persistent tinnitus are not known. Therefore, we longitudinally examined the independent associations of analgesic use, specifically low-dose and moderate-dose aspirin, NSAIDs, acetaminophen, and the risk of incident persistent tinnitus in a well-characterized ongoing prospective cohort of 69,455 women in the Nurses’ Health Study II (NHSII)."

Drug-Induced Tinnitus and Other Hearing Disorders - SciHub: https://sci-hub.se/10.2165/00002018-199614030-00006

"Tinnitus and hearing loss, both reversible and irreversible, are associated both with acute intoxication and long term administration of a large range of drugs. The mechanism causing drug-induced ototoxicity is unclear, but may involve biochemical and consequent electrophysiological changes in the inner ear and eighth cranial nerve impulse transmission. Over 130 drugs and chemicals have been reported to be potentially ototoxic. The major classes are the aminoglycosides and other antimicrobials, anti-inflammatory agents, diuretics, antimalarial drugs, antineoplastic agents and some topically administered agents."

Strange smells - phantosmia, parosmia, hyperosmia, normosmia, hyposmia, or anosmia

Idiopathic Phantosmia: Outcome and Clinical Significance - SciHub: https://sci-hub.se/10.1159/000317024

"Background/Aim: Little is known about the clinical significance of phantosmia. The literature on phantosmia indicates that this symptom has a wide range of differential diagnoses. However, most cases of phantosmia remain of unknown origin. Our goal was to follow up patients with idiopathic phantosmia, with special regard to improvement rates and possible severe health conditions preceded by phantosmia of unknown origin. Methods: Forty-four patients with idiopathic phantosmia which had consulted our Ear-Nose-Throat Smell and Taste Clinic over the last 10 years were contacted by telephone and underwent a structured medical inter-
view. Results: None of the patients had developed any severe health condition or Parkinson’s disease. More than 5 years after the occurrence of phantosmia, more than 50% of the patients experienced disappearance (31.8%) or improvement (25%). In the remaining cases, phantosmia did not change (38.7%) or became worse (!5%). Conclusion: The main findings of the present study were that idiopathic phantosmia improves or disappears in almost two thirds of the patients after more than 5 years, and that idiopathic phantosmia seems to be more likely a harmless symptom rather than a reliable predictor of early Parkinson’s disease or
other severe diseases."

Advances in Understanding Parosmia: An fMRI Study

"Introduction: A number of patients with a diminished sense of smell also can suffer from parosmia. These patients with such a qualitative smell disorder are often more severely affected than patients exhibiting only a quantitative smell disorder. Qualitative smell disorders have heretofore been poorly investigated. The focus of the present study was, using functional MRI, to compare the central processing of olfactory stimulation in patients with qualitative smell disorders. Material and Methods: A total of 23 patients were investigated, 12 hyposmic patients without parosmia (HYP group) and 11 hyposmic patients with parosmia (PAR group). Both groups were matched with regard to sex and age. The olfactory smells used were peach and coffee odors. Results: The two groups exhibited different patterns of activation. In HYP patients a stronger activation was observed in the medial orbitofrontal cortex, anterior cingulate cortex, and parahippocampal gyrus, whereas in the PAR group stronger activation in the thalamus and putamen was seen. Discussion: These results are consistent with the hypothesis that there are specific patterns in the central processing of olfactory stimuli which differ in hyposmic patients with and without parosmia."