Just a query, it seems Tinnitus is often mentioned. I have PMR/GCA and have suffered with tinnitus now for over 2 years. It is always in the background, a bilateral ringing noise - it is worse when quiet, i can be distracted but if I bring my attention back to it, it is always there. It affects my hearing - lots of background noise and my tinnitus makes hearing difficult.
Does anyone else suffer from this? If so does it improve? it has not got easier and I am on 7mgs of steroids now .....I am wondering as it has been triggered whether I will be left with it long term?
I hope you all have a restful and healthy Easter.
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lesley2015
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Tinnitus is very wearing. You need to invest in a white noise machine if possible. The most important thing is to try and relax too and do distracting things. But the only thing that worked long time for a friend of mine with menieres and tnntus was the white noise.
Thanks poopadoop - I will investigate a white noise machine. My father had meniers for 50 years he developed tinnitus following a heart attack - I wonder if its genetic and some are more predisposed.
I had read that a trauma, virus and some meds (including preds) can trigger it.
I get it too since being on Pred. Only now and then do I become aware of a kind of low whistle. I still get blood pulsing and sort of whooshing in my ears too. I hope they go when I am finished with Pred.
I also have it. Seemed to get worse after I had been on 40 mg of pred for a few months. Worse at night and when tired. Varies from a ringing to a chugging, pounding, or whistling sound.
I had a little tinnitus before PMR/GCA. It is tiring and does interfere with hearing when it’s bad.
I have had tinnitus on and off for ages. I don't know if it's Pred. Could be any of the other meds I take. My late Father had it too, so I just thought I had inherited it from him.The ringing is sometimes so loud that I think others can hear it. There's a saying that if your ears are ringing, somebody is talking about you!
Tinnitus can be part of GCA if the blood supply to the ears is affected. It is listed as a possible side effect of pred - but pred is often used to treat tinnitus.
I had tinnitus with my PMR - I also had briefly had jaw pain and scalp tenderness so was probably borderline GCA. Once I was finally started on pred it disappeared and has never returned - that was at PMR-level doses.
If it is really a problem - and I know it can be - then getting your hearing tested may be useful - it is possible to have "hearing aids" that help.
This is my first post here prompted by your mention of tinnitus which I became aware of and ‘suffering’ since being diagnosed with MS in mid 1990’s - although do not have any of disabling features of MS. Following the classic symptoms I was diagnosed with PMR in November 2017 and then after 3 weeks of unbearable headaches diagnosed with GCA in February 2018. I am again starting to reduce the Prednisilone now at 40mg daily and just learning to cope and taking each day as it comes. I still try to keep active walking 7 miles a day. I am 68 and had just returned from 2 months touring France when the PMR hit me.
My comment is that tinnitus has never gone away - it is always there - sometimes bit louder now. I wish I knew why or where it came from - this seems an unknown too. I have found that being outside - keeping active - helps me - the only positive note is that at least it is not painful! As with PMR/GCA
Yes totally agree, being busy and being out side does help and it is not painful but very annoying sometimes. Be interesting to see if it goes a little after the dreaded preds are done with!
Glad you put a post on too
Well the tinnitus I have is not constant. When I chew each time I bite down I get a ring zings in both ears. When I rub my scalp like when drying my hair it ring zings. When my face was in full moon just touching my face would give me a ring zing. So I am one of the luckier ones as mine is not constant.
I mentioned it to my Rhuemetologist and he seemed puzzled so I did not pursue it. Ps it has only been since Prednisone it started after I got down to 30 from 50 mgs.
Thanks Lin-calif, yes my GP and Rheumy just look at me strangley and continue as if I havent said any thing, might shout it next time !! If they had it they would definitely be more understanding.
Mine isnt made worse my eating or any physical stimultion, just there all the time - never mind there are worse things.
I have suffered with Tinnitus for several years and was just diagnosed with GCA & PMR in November 2017. I never thought about the two being related, but have seen so many comments from people who have PMR, GCA or both and also have Tinnitus... there could be a link. (?)
Hi Lesley, I nearly didn't begin this as I'm not going to be of much help, other than to tell you my story, starting with tinnitus but leading on to PMR. My tinnitus began with a whistling in one ear back in 1990, brought on I believe by the shock of losing my parents within six months of each other. I soon needed a hearing aid and some years later both sides were affected, needing two aids. Jumping on several years until the onset of my PMR, New Year 2014, my tinnitus and hearing have steadily worsened. I am currently on 8mg steroids, almost at 7.5 mg. I don't know if the PMR and/or taking steroids are the cause, but for a year or more now as well as a whistling sound, I also have a low droning, but what has troubled me even more is added to these I get four notes of "music" constantly playing! Before anyone thinks I'm ready for the funny farm, although not so widespread, I am not alone with this musical tinnitus. If I am stressed the speed and volume increases, which convinces me that our old friend stress has something else to answer for, as with the PMR, I believe. I hold on to the hope that once the PMR has departed and I am no longer reliant on steroids - I do believe that day will come! - then the tinnitus will lessen, too!
I will end by mentioning something that I recently experienced which might help you and others. I have written on here before that I am my nearly-95 year old husband's full time carer (he has Alzheimer's and stomach cancer) and I can only get out for about three hours a week when a relief carer stays with him. Why I am mentioning this is because recently in my "time off" a dear friend took me for a back, neck and shoulders massage and this gave me such a lovely morning, but even better, total relaxation and a feeling of peace as I let everything waft over me! I'm not saying it cured the PMR or the tinnitus but in that half hour I was just "me" again, all stress gone and I was able to forget any troubles, and also felt that it really did me good physically for a long time afterwards. It might not work for everyone and, indeed, might not be possible for some to have, but if it is I do recommend this little bit of pampering. I shall do my best to go again whenever I can, and do hope that anyone who might have also been wondering about massages will take encouragement from my tale and go for it!
I am so pleased Lesley that your lovely friend helped you via the neck massage as you obviously have a lot to cope with .l have the sound of a pulse in my right ear which corresponds with the pulse in my wrist,l have had this for about four years now,before my PMR was diagnosed nearly two years ago. I have had some scary moments when it kept missing beats. The only explanation that my GP has given me is that the PMR was pinching the blood vessels in my neck,l am not very happy about this but as you and some of the others have posted that they have tinnitus,it does seem to be a symptom of PMR and GCA.Thankyou for telling us about the massaging,l hope you can continue to enjoy this and get some much needed peace and relaxation xx
I think I'd find a new GP - what a load of (censored) ...
If you "feel" or "hear" missing beats it is very unlikely to be anything to do wth the PMR directly - it COULD be an arrythmia, I have atrial fibrillation due to the autoimmune part of the PMR for example, or it could be a perfectly "normal" event, it is something that happens to all of us at some time but since mostly irregular beats are not a problem you are unaware of it. But it does need to be checked using a 24 hour Holter ECG monitor to make sure it is nothing to worry about - and done until you have had an episode while on the monitor. Your GP just taking your pulse or listening to your heart or even a one-off ECG while you are in the practice is useless - arrythmias tend to be what is called paroxysmal, especially in the early days, so they don't happen to order and may not happen for hours or days at a time. I can go weeks, or they can happen for half an hour or for 2 or 3 hours and then disappear.
Thankyou PMRpo,you have described just what has happened to me,l can also go weeks without any irregular beats,last summer it was stop start stop start one morning and l saw my G P that morning but by the time l got to the appointment it had stopped missing beats. This was not the first time l had rushed to the doctors and a doctor did detect it once and l was given an ECG and was referred to cardiology. I had a monitor for two weeks and had no missed beats during that time. I have also been referred a second time and again nothing was detected. It is true what you say,an ECG or brief doctors appointment is useless. I was called by cardiology recently again to gol for another ECG,he was so brisk and said nothing to me,l have got the impression that they think l am wasting their time.l do find that the problem is worse during the summer when the weather is very hot,and l also know that l would not know this was happening if l did not have the noise in my head.l think when it happens again l will try A&E.Thankyou again PMR pro,l wish you all the best,at least l know that l am not alone with this problem.
A friend has just emailed me about her husband having a pacemaker fitted - correcting a problem that has been there for probably 30 years judging by the history! It wasn't until after several fainting episodes they admitted him and stuck him on an ECG until it happened! He was having bradycardia episodes (slow heart rate).
The fastest way is to dial 999 and that is what my GP suggested. I thought at the time it was OTT but on reflection - perhaps not. There is no real excuse, there are forms of monitoring called event recorders where you push a button when you feel something is happening and the previous few minutes are recorded.
I have a correction to make,the previous post was a reply to lin Lou ,sorry Lesley for the mix up,l can only wish you all the best and blame the mistake on the dreaded brain fog.
Thats fine Grants148, I guessed as Lin-lou did that it was for her. I must admit, I generally feel to sore to even contemplate a massage. But meditation does help me
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