l have had intermittent earache,tinnitus, vertigo and eye pain in my left eye (hurts looking to the left or down) since about January.
This cluster of symptoms lasts about 2 to 5 days on and off, so l never make an appointment to my GP because l know the symptoms will have disappeared and (they do)by the time l would get in to the surgery. The earache, for example, usually lasts about an hour or less., then might return hours or days later before disappearing altogether for a month, so l doubt it is an infection. Sometimes l also wake up with left nostril completely blocked, which disappears without a trace as soon as l walk around.
l lost my sense of smell 3 years ago, and l was diagnosed with a post nasal drip when the senses were investigated if any of that helps.
Just wondering if anyone else had this sort of issue before being diagnosed.
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Blue_feather
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It could be a viral infection? I’ve had a viral infection which affected my sinuses, chronic sinusitis. I’ve had a nightmare trying to get diagnosis, because no inflammation markers were elevated no one believed me. I had the symptoms come and go like yours. Go to your GP regardless of symptoms or not, they can start investigations then. Good luck 👍🏼
I had sinus issues for about 6 or 7 years before diagnosis. The symptoms would be similar to sinusitis so I often got put on antibiotics (and it’s likely that it could have been sinusitis and a coincidence). Symptoms would come and go with my worst symptoms lasting a couple of mont. then disappearing except for the tinnitus which became constant. About 8 months before diagnosis my symptoms became persistent involving totally blocked nose, hearing loss, no smell, gum pain, nose bleeds every day. For me this was coupled with joint pain, thinking I had covid or the flu repeatedly due to high temperature, eye pain, outer and inner ear pain and eventually kidney failure.
About 4 months before I went into kidney failure I saw a rheumatologist about my joint pain (could barely move some mornings) and was told it wasn’t autoimmune because all my markers were normal. Because a rheumatologist told me this I got repeatedly ignored by every GP I went to after that, until one finally listened.
So, long story, but yes, before the other relentless torrent of symptoms my sinuses bothered me for years before I was diagnosed, and my blood tests never showed anything until I spiralled. It would have been possible for them to diagnose me through a nasal biopsy.
Glad Blue-feather posted & am grateful of every detail in your reply, thanks. & I hope blue-feather doesn’t mind me asking you a question…
Rheumatology says I have small vessel vasculitis secondary to my lupus & immunology says my chronic sinusitis is due to my PID (Primary immunodeficiency disease). Imm7nology has me doing weekly immunoglobulin G serum subcutaneous infusions at home long term for this.
But no one (GPs, ENT consultants, rheumies) has ever asked why i’ve needed to treat persistent but fluctuating soreness, bleeding, crusting, infections etc in my nostrils (much worse in right nostril & the area affected is getting bigger + deeper + these symptoms are becoming less fluctuating & more constantly sore etc all the time). I do also have ear (vestibular neuritis we think inc vertigo, tinnitus etc, ) probs & eye probs (put downs to severe Sjogrens dry eye filamentary keratitis for which am on nightly cyclosporin drops)
Am 68 & have been here on HU for over 10 years learning about my childhood onset AID + CTD mix etc & I’m responding v positively to all the treatments my many clinics have me on, but now the nose symptoms are more severe I think I’ve got to get these documented. Until now we’ve managed my sinuses + nasal stuff them with immunology’s twice daily sinus rinses + long term daily coamoxiclav + Vaseline, & my GP’s bactroban for infections (I became resistant to naseptin years ago).
Luckily I meet enough official diagnostic criteria for my SLE & Sjogrens to be definitively diagnosed. But my because my type of PID is panhypogammaglobulinaemia (Antibody Deficiency Disease) means I can’t make antibodies so am seronegative for all my AIDs (SLE, Sjogrens, the vasculitis, + Scleroderma-ish manifestations etc etc ). So your mentioning biopsy fits with my understanding of how better to diagnose this early onset persistent & progressively severe trouble in my nose.
E.g. Am wondering what route you’d take if you were in my shoes seeking more thorough diagnosis of this including nasal biopsy:
I have rheumatology (in person) & immunology (on phone) appts coming up in the next couple of months, so my plan has been to bring this up with those consultants, not with my GP. I’ve even thought about seeing ENT privately & requesting biopsy. But maybe biopsy is best done by rheumatology? Or should I get rheumatology or immunology to refer me to ENT?
I forgot to mention the crusting! Was like a daily coral reef growing in my nose. Always worse on one side but eventually in both. I’m a cold sore sufferer too, so for years I thought that the pain deep in my nose was colds sores (I’ve had cold sores in my nose before), but since diagnosis I’ve realised a lot of the time I thought it was cold sores was actually the vasculitis causing pain up my nose and crusting.
When I got admitted into hospital the particular hospital I was in couldn’t do kidney biopsies so the consultants were discussing sending me to ENT for a nasal biopsy (I ended up being transferred to a different hospital as I needed to be in a renal unit anyway so got the kidney biopsy). From the consultant discussions, the rheumatologist was going to liaise with the ENT to get the nasal biopsy for diagnosis. I believe nasal biopsies aren’t as accurate as other tissue biopsy, so if negative won’t rule out vasculitis, but if positive it’s definitely right and would give you a diagnosis.
Hi BarnclownThe hospital you attend has an excellent ENT doctor who is expert at vasculitis. I’m not sure if it’s still the case, he used to be there once a month as he’s based at another hospital. He uses a camera up to nose and can tell an awful lot from that. May be helpful if you can get a referral for a CT scan of your sinuses too. Good luck
🤩 OMG this I tell is VVVVVV HELPFUL,! THANKS V MUCH: yes, & the vasculitis team at my Univ Hosp is top notch too… & I know that both my Immunology & Rheumatology teams have multidiscipline relationships with tertiary specialists at this .& at other hosps which seem to be more or less not mentioned until some manifestation becomes more severe eg a few years before the pandemic hit, my imm. chief referred me to his IMM/ENT colleague @ UCLH re the sinusitis (at that time, I never thought to mention this nose prob) where they did CT my sinuses. Anyway, I will ask both rheumatology & immunology about all this. Have a feeling we’ll agree I need to be seen by an ENT specialising in AID/CTD/PID patients, but we’ll also agree that the combined therapy meds am on for all that are pretty much exactly what I’d need to be on if this nose issue is more significant now…although maybe we could increase my dose of mycophenolate 🤷🏼♀️
Hi Blu_feather. I had the headaches and eye pain on the right side but it was continuous and not intermittent. I had a bit of sinus involvement and that was intermittent. My GP (won’t see him anymore) keep saying it was cluster headaches and to keep taking ibuprofen, that was what damaged my kidneys. Be careful with over the counter meds. It’s tempting to keep on them and not get it sorted out hoping it will go away, I found that out the hard way. Nick.
Have you been tested for Hypothyroidism? My original doctor thought I had Vasculitis. I was diagnosed with Hypothyroidism. I had ALL of the symptoms you listed and a lot more. Brain fog, kidney issues, bone pains, muscle pains, fatigue, blurry vision, rapid weight loss, severe lightheaded, dizziness, frequent urination with little flow, night sweats, hot flashes, chest pains, neck pains,, jaw pains, high cholesterol, high and low blood pressure. Just before I started treatment for Hypothyroidism, I had developed earaches,tinnitus, vertigo, eye pains, eye discharge. My veins were bulging in my lower legs. Since starting treatment along with specific vitamins, almost all of my symptoms are gone. On a side note, a blood test 7 years prior told the story, but it was ignored. I have been misdiagnosed for 7 years before my new doctor nailed it.
Patients with autoimmune Hashimoto's face a higher risk of developing autoimmune inner ear disease, or AIED. In AIED, as antibodies target the inner ear, inflammation can lead to tinnitus and later progress to fluctuating, progressive, or sudden sensorineural hearing loss in both ears. Chronic sinus infections, sinus headaches, post-nasal drip, nasal congestion and even impaired hearing from that congestion are all common hypothyroidism symptoms.
I still have it, thirteen years after diagnosis and like you I don’t see a doctor a/ because it’s nigh on impossible b/ because it disappears before I can get an appointment. I have learnt to live with it and when I’m asked how I am the reply is -fine!
I tested anca positive 4 years ago, but the rheumy said it wasn't attached to anything so not concerned. My latest anca antibodies test was low/ within range, so nothing causing mischief from what l can gather. Is it worth me keeping a check on this cluster of things?
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