I hope you're all keeping well in lockdown and the end of winter! I'm just posting this out there to see who can relate. I get pulsatile tinnitus quite regularly, especially when I'm stressed, in a flare, or whenever I lie down to go to sleep. It keeps me up quite often, and can make my ears feel red-hot and throbbing.
This has been going on for years and is no news, but recently my ears are burning up a lot more frequently, even when I feel okay in myself. I have also developed the more classic tinnitus of ringing in my ears which is there 24/7 like a bomb just went off. I'm also getting sudden waves of hearing loss in both ears which goes away after a minute or so.
I know this can be caused by hydroxychloroquine, but wondered if anyone else had experienced both pulsatile and classic tinnitus and whether it's anything to be concerned about?
I also have scaly dry skin inside both ears, so certainly have some discoid activity there it seems.
Stay well!
Alex
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Londonlupie
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I can relate to this as take Hydroxychloroquine 400mg daily. I also have Sjogren's syndrome. I deal with scaly dry, itchy ears - with Stress, more symptomatic.
I'm prescribed Ear Calm *5ml Acetic Acid 2% Ear Spray* apply one dose into both ears at least three times a day.
Sorry to hear you experience this too! The dry ears can be quite embarrassing as it is becoming quite noticeable, so definitely going to give Ear Calm a try! I had mentioned this to my doctor but in the usual fashion they brushed it off with no advice, really appreciate this!
Yes and it drives me mad! I get pulsating tinnitus vinnmy left ear and my tinnitus is caused by inflammation in my acoustic nerve due to flare as opposed to HCQ. I know this because the tinnitus came before the HCQ but others are different. It's always worse when I'm flaring. I was helped alot by the audiology dept at my local hospital
But it stops me sleeping. Did you know that they now sell pillows on Amazon with holes cut out for ears so your ear isn't pressed against anything? I haven't got one myself but I am tempted.
Thanks happytulip, always nice to know you're not alone with these more random symptoms! My pulsatile has driven me mad for years now, sometimes it's so strong it makes the pillowcase move so the pillow with cut-out sounds super useful, thanks
Mine is similar, tinnitus was always there but it seems to have increased in severity since HCQ. I'm also getting spells of vertigo, so definitely time to get an ENT referral I think.
I saw ENT and they were the ones who referred me to audiology for tinnitus counselling. They gave me all sorts of gadgets....might be worth asking?? You never know what might help?
Please also try applying a hot flannel around your jaw line, ten mins at a time. This helps a lot with TMJ pain. Also rubbing with index finger, just in front of ear lope, at site of cheek bone. Even apply Volterol gel to ease it.
Hi Alex. I do get both types of tinnitus and also experience brief periods of hearing loss. My hearing goes a for a few seconds right before ringing tinnitus. I’ve always had pulsatile tinnitus. This is not new for me. Even had it before lupus dx. The ringing tinnitus I think is from cranial nerve problems since I do have nystagmus and symptoms go together. I don’t think it was from HCQ in my case. Ringing has improved with IVIG.
I also get red hot ears. Comes along with facial flushing for me. Looks like I’m having a hot flash. I agree it might be from discoid because I also get small blisters around or in my ears sometimes. I have scaly wax skin stuff come out on q-tips when I clean my ears as well.
I think I’d definitely let someone know what’s been going on especially the hearing loss. They may send you to audiology to have your hearing checked. Wouldn’t be a bad thing.
Here is a recent study showing the prevalence of hearing loss in SLE sufferers is 27%. No symptoms can accurately predict who is susceptible to hearing loss and who isn’t.
Here is another publication showing antimalarial use does NOT increase risk of hearing loss in lupus sufferers who take medications like chloroquine or hydroxychloroquine.
Hi Jmiller623, thanks so much for the useful info. And it's always nice to know I'm not the only one experiencing these things!
I would say the pulsatile tinnitus (for me at least) is connected to blood vessel malformation, which is of course an effect lupus can have on the body. As I get red ears too I would say it's all related to the general circulation in and around my ear, but would like to find out as it keeps me up!
As for the classic tinnitus, I have always had it but I think the HCQ does tend to make it worse. I take two tablets a day, and between the two I definitely notice the tinnitus easing up a little. But the intermittent hearing loss is definitely a new one.
Hope you're not having too much trouble with it all! The articles are super useful.
No problem. We are all different. I call our myriad of problems our own autoimmune fingerprint. I have heard people complain of tinnitus with HCQ. I think it’s even listed as a side effect.
I hope you find some answers and relief soon enough! Keep us in the loop. Sending hugs. ❤️xx
I get this pulsing tinnitus in my left ear, like a loud heart beat.
I also have the ringing tinnitus in both ears, constantly now & it drives me crazy, along with occasional bouts of severe ear pain & loss of balance.
My hearing can go from being really sensitive & amplifying, to hearing loss.
Was referred to ENT & i had a hearing test which came back fine.
I am now awaiting an MRI. I Had one last summer & it didnt show anything ..so pretty sure this will be the same again.
I am on hydroxy, but I was experiencing ear problems & tinnitus way before I started taking it.
I never gave a thought to the dry flaky like stuff in my ears before & just thought it was normal? but maybe its connected??
I like the idea of happytulips holey pillow ..anything that can disguise this awful repetitive buzzing, particularly at night, is a winner all the way with me👍
Hi daisydayz, so nice to know we're not alone with this! It certainly drives me a bit mad, and I'm always so conscious of when my ears burn up and start throbbing as it seems to take over my face for a little while.
Great to know nothing too serious was going on with your symptoms, I'm looking forward to seeing ENT just to check it all out and maybe even get to the bottom of it
Thanks again, hopefully we'll find a bit of peace from our own eardrums at some stage!
I get pulsatilla tinnitus and had scans etc to make sure that there were no structural problems with the blood vessels there. I have scleroderma, and Sjögrens and my ears get very itchy too. I think that I’ve just got used to the pulsing now.
Hi, I have both pulsatile & ringing, was diagnosed with idiopathic intracranial hypertension 11 years ago and it had always been put down to that even though its been managed and drs puzzled as to why I would still have it. I didn't realise this was also associated with lupus.
Hi GiaM, thanks for sharing. It seems to be quite a common feature for people with lupus judging from the replies, which definitely tells me it's one for the official symptoms list?...
My gut tells me it has something to do with blood vessel malformation, as of course things like vasculitis are common with lupus. It could also be general inflammation, the ear works in such mysterious ways so who knows what causes it all.
Thanks for your reply Alex that's really interesting to know! I've had it for so long that now when I'm having a dip health wise it distorts my hearing e.g walking the dog I hear the noise of passing cars as a pulsating sound, quite bizarre! I also get very hot ears, like the inside of my ears are burning accompanied by the facial flushing. GP referred me after seeing my face on a visit for something unrelated.
I have my 1st rheumatology appointment next week so thats something I can discuss, though I'm being very defeatist and expect it will come to nothing.
I have both chronic, quite severe tinnitus and pulsating tinnitus. Drives me crazy.
Several referrals to ENT and audiology , even specialists brain scan and checks at a tinnitus specialist (apparently it’s known now that tinnitus can be brain relates, not just ear related as thought previously).
The only help I have been given is ear aids for tinnitus but they aren’t of help.
(slight hearing loss also found on tests).
I’ve always had flaky ear skin, pre tinnitus.
I am not diagnosed with Lupus but other diagnosis.
I’ve read that tinnitus can be related to stress, autoimmune conditions and hormonal problems.
ENT are little help on this tbh, but on the NHS you have to go via an ENT to get to audiology.
Hi NannieB8, thanks for sharing your experience with this! I can relate as mine is definitely worse during flares and with stress, my ears just pulse like crazy and the sound is as if my eardrums will burst from the pressure!
Water pillow is a great recommendation, I really have trouble sleeping on either ear when it's bad and sometimes sleeping on my back seems worse as I have to deal with both ears pulsing either side...
Thansk again for your help, hope you manage to find some great solutions to yours!
I have had Tinnitus none stop for two years it started on a Cruise as can Merneires ! I went to see an ENT specialist, nothing found even had a brain scan. Long use of high dose Steroids gave me Glaucoma but now have amazing eye drops.
There is a group for Tinnitus and you can down load an app that uses a distraction method of levels of white noise. I have tried everything but did find a head band with Bluetooth that you can link to your phone for the above or listening to music or stories. If you live in London there is a centre where you can go to learn techniques
I just want to add that although I have had Lupus for over ten years, I don’t take any of the drugs as none made much difference and too many side effects. Also many people with Lupus may never get Tinnitus and many who don’t have Lupus have it
I think I have pulsating tinnitus which has steadily been getting worse I’m waiting for an ENT appointment I never knew it was related to hydroxychloraquine. I definitely want to get it looked at because it’s really bothering me now
Hi Akerfoot, I don't think pulsatile tinnitus is related to HCQ, only the classic tinnitus is reported to increase upon use of HCQ. I have had puslatile tinnitus for years, way before I was ever treated for lupus! But I do believe it is related to lupus as things like vasculitis and general blood vessel malformation can affect the ears. Hope you get your referral okay!
My vasculitis has been playing up recently too, so may well be connected. My renal consultant said he’d try to fast track the appointment so fingers crossed
Oh gosh. So its not just me ! Buzzing in right ear worse since steroids , on hy cl for 30 years. Have had hearing checks . All ok. Slight hearing loss. Mine is worse at present since vaccine plus palpitations and digestive things. ECG on Weds. Wary of having jab 2 !
I also have multitude of problems with tinnitus, hearing etc. ENT in 2014 declared hearing fine and MRI clear when testing for specific Lupus Related problems. GP still continued to find ears dull and have been using Beclometasone nasal spray for years after tinnitus changed to a noise like morse code in my ear, very weird. Spray helped with hearing and lightheadedness.
However, I don’t think decent evidence of long term Hydroxychloroquine effects on hearing loss is available, though it is considered possible side effect. I have been on it 20 years, did try to reduce it to help with hearing loss but my joints protested too much.
Hi, I also have pulsatile tinnitus and rheumatoid arthritis and take Plaquenil. I have been searching high and low for answers if this is related. I have had multiple MRI's, scans, etc. which everyone should be doing if they do in fact have PT. So far...nothing has been found. I do feel like my symptom's of PT started around my diagnosis but nothing confirmed. Still looking for answers. When and If I do...I will gladly post. Best of luck to everyone.
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