Sticky Blood-Hughes Syndrome Support

Experience of problems with hearing!!

Hi all

Today i have been for a hearing test, my hearing ok. But symptoms i gave to audiologist were ringing in my ears, earache, sometimes very painful, pressure, feel like they are blocked, not tolerate high sound, balance and dizziness etc. Audiologist says need gp referral to specialist. Anybody had similar? was terrified before appointment, thought i was going deaf.

Take care all gentle hugs love jessielou xxxxxx sheena xxxxxx :-) :-) :-)

28 Replies

I had ringing in my ears for the last couple of years and over the last 18 months I noticed (or actually my other half did!) that I had to put the TV on much higher volume. Then I found I was having problems hearing people talk in noisy environments like a cafe.

I went to the GP and he referred me for a hearing test. I found that I had developed moderate hearing loss in both ears. It may be a coincidence but the hearing loss was all since I started having clotting problems.

In April this year I had two hearing aids fitted which work really well but I'm in my 40's and don't think I should be starting to get hearing problems this early in life!

I still have the ringing in my ears. That seems to be worse at night but I don't think it is, just that I notice it more as it is quieter. It doesn't seem to improve or get worse with changes in INR level so no idea what that is all about.

Does any one know if hearing loss is a recognised symptom of APS?

Thanks for raising as an issue Jessielou.

Take care all.



Prof Hughes raised this issue in one of his case studies in his blog. Cant remember which one but should be easy to find. Seem to remember that the hearing was associated with the APS.

The ringing in the ears in Tinnitus. I got a lot of that after my stroke but it has settled down now. Given I am on blood thinners it would be not too far of a stretch to conclude that the thinning of the blood has helped with that. I also thought I read somewhere that Meniere's Disease could also be connected with APS which would explain a lot of the symptoms.

Sheena what you are describing is really common in FM. Your heightened sensitivity of your autonomic nervous system can make it difficult to hear especially when you are in situations where there is noisy background noise. I also find I cant stand things like crowd noise like football matches (never liked it anyway) but it really agitates me. Its the same with smell and also sight. I find it really difficult in some shops, especially supermarkets and some department stores. Its the way they are laid out as I find after a few minutes they feel completely over whelming and I have to leave. Other stores are fine. When we used to go on holiday to Florida there was one chain of stores I could not touch with a barge pole...shame cos I am a shopaholic!


Hi lyn

thanks hon, fm was my original dx, then discharged by a rubbish rheumy who said there was nothing she could do to help, had me in tears and that takes a lot! to be fair she did refer me to haematologist who then referred me to tommies, thank goodness. I had no idea Fibro can cause the sensory issues i have, people around me don't understand how noise hurts, and that i struggle to hear them speak when other sounds. Don't tolerate light or smell well either, never been keen on shopping, online shopping and delivery great for me.

The high pitched hiss in my ears, drives me crackers. Especially when migraines make there presence felt.

Hope the gp will refer me to get it all checked out!!

I hope you good today

take care gentle hugs sheena xxxx :-) :-) :-)


Last year, March FIRST, I awakened with loud tinnitus (mine was high-pitched horrid buzzing, plus my ears seemed blocked and my hearing was decreased significantly. I went to the usual "normals"....audiologists knew zilch, they knew nothing about autoimmune disorders. I ended up at a huge specialist at UCSD San Diego (specializes in autoimmune stuff)..he said only treatment is high dose prednisone (no thanks, my 20mg daily is bsd enuf....he also tried a dieuretic and the info page on it said: Brings out Lupus Symptoms. My legs swelled and got huge from the treatment..., then I took Lasix which worked with the swelling. Finally he gave me Neurontin, low dose, an antidepressant. It had no effect on my hearing. I got a custom hearing aid (only got right side) which does little ($2000 for one side). No one knows anything, BUT I found many many sights saying that Autoimmune disorders cause hearing problems and tinnitus.

Cannot describe frustration and lack of info, but found it in many research papers, clear as day: MINE IS STILL THERE EVERY SECOND OF EVERY DAY. Hearing is now only about 70% LOSS. It's making me crazy. We drove to the top of nearby mountain, and they popped, but only for a minute max..., then resumed. Have inversion machine which also helps,, but hurts my back which broke 5 times since 2008. Have had Hughes Syndrome and Lupus since 1960. Take coumadin, had big stroke in 91, and problems today are hideous.....everything seems broken (knees are gone, shoulders have collapsed from bone death, and you name it.

All I can say is that I am certain that your hearing issues are caused by your autoimmune disease. I have found NO SOLUTION, but am thoroughly convinced that the hearing problems are caused by the autoimmune disorder....all research points that way, but no one knows much more than that. I can hardly hear people much of the time and my hearing is whacky (I hear ok on my speaker phone, but can't hear husband next to me) has been a horrible experience.

The audiologists are just salesmen trying to make a buck. Dr. Hughes wrote an "open letter" to Audiologists not too long ago.

I would not wish this upon anyone. It is agonizin and loud and I'm practicaly deaf. I'm older than you are (tho had strokein 40's) and the past few years have been brutal. I think that APS causes just about anything; it is VERY COMPLEX and complicated.

I'll check back here soon to see if you got this. Hope it helps but wish you didn't have to go through it. I keep thinking that it will sudenly vanish, but so far, NO NO NO. And it's just one of a zillion huge issues that have happened since 1960 (year of son's birth)

from this disease. All the best, Berrie (Certain there is much more I could add, but it's 2am and need to attempt the evasive "Sleep".


Hi berrie

Thanks hon for taking the time to respond, Im sorry autoimmune coditions hit you so hard. The medical profession although trying, sadly don't have all the answers. The buzzing drives you wild doesn't it.

Worse is waking up and its their along with wondering what hurts today!! Wouldn't wish it on anyone, just wish people could understand how ill it all makes you feel.

Hope you not feeling to bad today

Take care gentle hugs sheena xxxx jessielou xxxxx :-) :-) :-)


Hello, I'm relatively new to this forum and have just managed to post a reply to your question in the wrong place! I'll more or less repeat it here. I was diagnosed with APS about ten years ago, after a miscarriage and very painful joints. Been on aspirin since then and largely asymptomatic (I thought). However, one thing I've had for at least 25 years is these blocked ears. No tinnitus though I'm more sensitive to noise and have minor hearing loss (which I blame on my job, I'm an interpreter and spend all day listening to people through headphones!), but my ears block up quite regularly, which is really annoying, though not painful. I can hear myself speak very loudly within my head and have a feeling of alienation from the outside world. Anyway, I had my ears examined years ago my an ENT, who blamed the blockage on hormones (???). He confirmed that they can unblock by bending over and letting the blood flow into my head, which I had been doing for some time, and said it could also be done by pressing your hands against your neck for a few seconds to keep the blood in your head until your ears pop. I don't know why this works, albeit temporarily, but it does. Try it and let me know. I suppose it may have to do with limited blood supply to the head and that that's the link to Hughes', but that's just my own uneducated guess.


Hi paquita

thankyou for taking the time to respond.

I believe like above that the autoimmune conditions are responsible for lots of symptoms we have.

Will try the things you suggested see if they help.

Hope you feeling well today.

Take care gentle hugs sheena xxxx jessielou xxxxx :-) :-) :-)


Hi all

I have Aps, on warfarin for 2 clots and I too have this problem. Tinnitus and blocked painful ears. I now wear hearing aids which have helped me enormously. When I don't wear them the tinnitus comes back. The hearing guys that I saw said I had an unusual hearing test graph. He concluded that the blood supply to the hairs in the semicircular canals of the ears have been compromised, and that the tinnitus may be due to my ears working too hard to compensate. The hearing aids were tuned in to exactly fit my graph, and I love them. I put them on in the morning like spectacles, and then forget about them. Hair over my ears and no one knows.

Hope this helps


Hi London lass

thanks hon for reply. I'm glad the hearing aids have helped you.

Seems Aps has a lot to answer for.

Hope you feeling well today.

Take care gentle hugs sheena xxxx jessielou xxxxx :-) :-) :-)


My APS Sis has been hard of hearing only in the past few months, only a few weeks beofe being diagnosed with APS.


Hi Lene,

Thanks for reply, sorry your sis got this too, hope she ok today.

Take care gentle hugs sheena xxxx jessielou xxxxx :-) :-) :-)


Hi - well yesterday all of a sudden, really bad pain in both ears, felt they were blocked, still with me, also my throat is throbbing and bad head - not the top, butbut half way up to about tips of ears line. I have dosed my self with co-codamol thoday to try and get rid of pain.

All of my nymph node areas hurt so much and throbbing, cannot get into see doctors until Friday, but my particular GP who is very good, tends to send me off to the hospital where I stay for 4 hours to be sorted out, so really want to avoid this. However, I am due INR test and will ask if there is a cancelation with another doctor.

I have been diagnosed with Tinnitius many years ago, but apart from ringing in my ears, nothing like this. Also I am wondering if having the flu jab last week as caused this.

Any way I will continue to take pain relief!!!! and lie on settee and watch the tv. and spoil myself!!!!!!!!!!!!!


Hi daisy

Thanks for reply, sorry you feeling so bad. Hope you feeling better,

Sending gentle hugs, take care sheena xxxx jessielou xxxxx :-) :-) :-)


I am lucky regarding hearing. I suffered with dizziness for years, the Gp put me on

Serc / Betahistine

This stopped the dizziness. I know it works because when I came off it for a while I couldn't move.

I have found on the rare occasion if I feel dizzy I quickly pinch my nose and blow forcing pressure through my ears like you do when getting off a plane.If i do it quickly enough it stops it, but for a short while afterwards i can hear the air is escaping. weird but true,

It doesn't effect my hearing although they feel blocked before, interesting about the ear popping.

I think one of the side effects of Asprin is hearing problems.

Keren xx


Hi keren,

Thankyou for your reply. Will be talking to gp about dizziness too. I will try what you suggested. Let you know if it helps.

Hope you feeling ok today.

Take care gentle hugs sheena xxxx jessielou xxxxx xxxxx:-) :-) :-)


WOW - this thread has really sparked some interest. I didn't realise that so many of us suffer from tinitus and hearing problems. I thought that my hearing loss may have just been a coincidence but reading all these responses has made me rethink a bit on that count.


Hi travelnut

thanks for your reply earlier by the way, brain fog strikes again.

I'm surprised how many of us have trouble with ears, learned lots from this.

Has to be autoimmune, makes you wonder about Fibro linking too?

Hope you well today.

Take care gentle hugs sheena xxxxx jessielou xxxx :-) :-) :-)


It took me long time with many appointments and tests to figure out, basically on my own, that the sudden hearing problems (which I wrote about earlier) were just another part of the APS, AVN, LA, and so on and so on, After having dealt with this disease (mostly unnamed until the stroke in 91) I have found that I learned more from patients (with the brilliant invention of the internet) than anywhere else. For example, I have what is "called" NIGHT OWL SYNDROME.....I feel better and better as the day goes on, and by nightfall, I'm much more okay.....but I got tired of people calling me a vampire and doc writing notes like "she thinks she's allegic to daylight (with sarcasm). After a long search, I found that this is a really common probem, Dr.Wallace (Lupus expert) even talks about it. But left on my own with my medical people, I would never have know how bad it is for so many.

Except for internal organ failure I don't think there's anything I have't started with deep venous thrombo phlebitus in 1960 when my son was about a month old. Nurses in recovery told me I was covered with huge bruises and bblack and blue. The docs put me at my mom's elevated my legs, did no medical intervention and I screamed for a month with elephantitus (HUGE swolen leg). I can think of very fewinstaces where I have had true medical progress, except for the discovery of the Lupus Anticoagulant in 1991, post stroke. That was sheer luck because the guru of blood disorders (Samuel Rapaport) was given to me by my primary care. Otherwise,, I'd be long dead from undercoagulation. There area million stories, yet I managed to live an exciting life mostly, in France for 3 years too, but there was always a sense of fear. In 2008, I was having back pains, and the exrays showed compression fractures which came from nowhere and had no reason to be, but it ruined mostof my freedom becausee it kept breaking. First surgery leaked cement all over my spine. Second surgery was helpful, but there are still fractures (las week my ribs (3) broke).....and I have had hematomas that turned my entire leg and/or arm pitch black forweeks, hideous, painful,, and no answers. The prednisone added more problems than imagiable, butwithout it, the pain is unbearable. Now my shoulders both have AVN, bone death, and it wasn't discovvered until an MRI. Once it shows on xrays, it istoo late to help the blood supply. However, the only help is surgery and I would not survive surgery with a completely unstable INR. Currently I can barely move my arms (I can type strangely) and the surgery is radical and not even do-able. Every day there is something new. My legs started leaking clear fluid a moonth a go. Weird. No answers, just wrap them up to soak up fluid. Seems to be under control but my right leg is swolen unbelievably for no reason because nothing makes sense with these autoimmune things.

If you are new to this, do not get too discouraged.....there have been plenty of great times, but aging is not my friend. At 69, it's a real battle. Post stroke, I was in great shape because being so young I recovered well. Now I'm what is called a "low dose management coumadidn patient" and cannot stabilize even on tiny tiny doses with the INR completely whacky and unpredictable. Body becomes "allergic" to the warfarin it seems and you can break out in a million spots (lookk like flea bites and itch too)....I have had some of this, but now testing twicea week......years of once per 4-6 weeks, then bang, it all went nuts.

If you have questions, you will trace enough info to the internet to begin to put things together. This doesn't cure, but it helps to finally know others with what I thought was a total loner problem for decades. This has been going on since 1960 and I swear more harm was done by medical professionals than any other thing. (example: had INR tested on a Friday; it was over 9, but Clinician did not tell me until following Monday, soo I bled out horrendously....he said he didn't workon weekends. I was drasticall ill from it for almost 4 months because the trauma caused phlebitus. And there were no solutions except pain meds and crying probably. That was the first of 5+ major bleeds in less than 2-1/2 years. Had never happened before. This diseasee changes constrantly and is beyondd unpredictable. Sympathy is hard to come by cuz I don't look sick. But I feel awful most of every minute and have for years. Pain meds are crazy and make you out-cold or nervous or whatever. I have tried everything, but stick with NORCO 10/325, probably too much, but it does not make me pass out. The depression has been much wors with these broken bones cuz they hurt so much and will eventually sentence me to a wheelchair permanently. It has progressed FAST.

If you have any questios, I have many years and episodes of experience and will help anyone and notjust with bad news. Have learned many solutions over years (but keep getting something new like the fluid flowing out of legs). Like many of you, I am light/noise, etc. sensitive and many public places make me overwhelmed. My left eye got a clot during stroke in 91 and has macular degeneration since then. Makes it very hard to read or be near bright lights. People are not very understanding of this. I'm really weary with the onset of this heightened shoulder stuff. The pain is unreal. I can't lift a fork or cup.

Still looking for non surgical answers. With APS, you have to be very careful that you don't cause wors inflammation (like masage or pt). PT's don't understand this inflammation aspect and want you to "push" yourself, little kowing that they are damaging the areas.

So now that I have taken up all the words left in the world, I'll sign off but will appreciate any information that applies to any of this. Esp the night owl and hearing AND emotional damage that is now piling up and exhausting me too much. Hang in there, Berrielee


Hi Berrielee,

I think the night owl applies to lots of us, whether cos we can`t sleep or the combination of meds that we all take. Prednisilone is dreadful for keeping us awake. I also think we can deal better when the rest of the family is all quiet for the night.

Whats coming through on this thread is that hearing would appear to be affected by autoimmune conditions. Or at least it makes you wonder??

I`m sure lack of oxygen to the brain and the amount of pain adds to the emotional trauma that autoimmune conditions cause.

Here for you, have a rant, a moan, offload whenever you need hon!! pretty sure you have many answers that I`m no where near to and sadly so many terrible experiences to share. We all have our stories to tell each heartbreaking for us all. This is a great place to tell them!

I hope you find some relief for your pain. You are a tough lady, I hope I have half the strength You`ve got when I need it!!!

Take care gentle hugs love Sheena xxxxxxxxx Jessielou xxxxx :-) :-) :-)


Hi hun, in one of my posts on here I did leave a link to Menere's disease which is all those symptoms you have described, here is the link again if it helps at all.

Hope you are ok today xx


This & the one above was meant for Sheena incase there was any confusion! x

I shall have to give you a bell Sheena after I come back from London tomorrow & we can catch up then hun anyway I do hope you are better today xx


Hi hon

Gonna try get gp refer like audiologist suggested. Checked out the website and does appear to match up.

Thanks suzi.

Take care gentle hugs Sheena xxxxxxxx :-) :-) :-)


Hi Sheena

Following on from your earlier comment about not realising that Fibro can cause your sensory issues. Here is a link to our "About Fibro" symptoms page which explains a lot of the symptoms and how they affect you.

Really sorry you had a rubbish Rheumy - sort of par for the course I think. May have had a silver lining though in that you have now got to Tommy's. Even so if you have FM you still should have good understanding and care for that too as the symptoms all cross over.

Guys now have a good clinic with a 90 minute assessment which includes a physio and Clinical psychologist. I can send you the link to that if you want it?

Hopefully things will get better once you see the specialist.

Hope you are feeling better today.


Hi Lyn,

Thanks for link, just gonna check it out, and will see about referral to guys.

I think everything flaring at the minute, mostly stress related although gp increasing some meds and a very low Inr not helping.

I`le be better once things settled with move and hopefully Plaquenil sorted.

Keep smiling through :-)

Hope you ok today

Take care gentle hugs Sheena xxxxxx :-) :-) :-)


Suzypawz....had checked out Ménière's disease at the onset in 2010...definitely NOT what I have, but thank you for the link.

....nothing surprises me now though and as said, I know that

51+ years of Lupus, APS, LA, every clotting disease known

(my Rheumy said he had never seen anyone with Positives for

ALL autoimmunice hypercoaguable disorders). Of course, most of it is treated by prednisone (plaquenil made me totally nauseated 7/24 and did not help symptoms, although it sure has a good reputation)...the combo

is prednisone AND coumadin and they get to be unfriently towaard each other after awhile. The hideous full limb bruising (truly purple

and black entire limb lengths. That part, massive hematomas, did not

occur until years into the disorder....foud that everything is constantly changing. Never expected to have my shoulder joints DIE.

Yet, there is a wonderful support group for AVN I just found and it is often linked to all this other stuff.) Well, let's all keep on sharing cuz it is where the ideas and answers are the most genuine.

"" is superb for finding info all written by pts. and covering every imaginable medication experience. Just google the name of medication you want to hear about from pts. and attach "ask a patient" to the search space. Really easy. Very legit too.

I learned a lot there.


Hello just wanted to say I am also suffering the same as you at the moment with my ears, it's horrible, buzzing, blocked difficulty in hearing, everything sound strange, like the kettle boiling sounds weird, and when I talk on the phone it kind of echoes. I had the same a year ago, and the Doctor thought it was an ear infection and gave me antibiotics, but I think it was a coincidence that it cleared, as I have had them this time but no change. It's interesting reading other people's experiences of this, and it's kind of comforting to know I am not the only one suffering with this. Hope you feel better soon.


Hi Ekiddle

Thanks for your reply. Welcome to the site. I'm sorry you got this too, is horrible.

I know i don't have ear infections. So will be pushing gp for referral. I do think it is related to Aps.

Hope you not too bad today.

Take care gentle hugs sheena xxxxxx jessielou xxxxx :-) :-) :-)


Thank you so much , I am seeing my GP today as it has got worse over the weekend, I will let you know the outome. Nice to have people who understand to talk to. Xx


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