PMRGCAuk
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Has anybody got experience of Pulsatile Tinnitus?

I have been having this troubling symptom for a number of months now and have found it difficult to explain to those closest to me. A sort of rushing in the ears in time to your heart beat. I haven't mentioned it to my GP just assuming that it was either a Pred side effect or raised blood pressure meds. Causing it. After a bit of Internet research I realise that it does need mentioning and could be associated with forms of Vasculitis.

I prefer to go to the GP armed with some knowledge and options. I don't want to be brushed off or sent down another unconnected medical path. This symptom has only appeared within my PMR time frame and I am sure it is associated. Thanks!

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Hi SJ, I too have experienced this although in short bursts, and it predates my PMR. I also suffer from normal tinnitus (a high-pitched whistle) which is constant. I ignored the pulsing one as I thought it was just another annoying variation of the usual problem. I will be very interested to hear any other responses.

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Yes me too. There are a few benign diagnoses but a couple of worrying ones. I would dearly love to know why my GP put me on 50 mgs of Atenolol for raised blood pressure over a year ago. It didn't work, no doctor said anything and finally I was prescribed something more modern and got my first normal reading. I now discover that Atenolol is a devil to get off. I think it may be the culprit with this Tinnitus too - argh!

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I have tinnitus as well and do have short periods of being aware of my heart beat ..a weird feeling.

Thank you, Jane, for alerting this to us. Such a good idea to go armed with all the info you can gather on the matter, and what better place to look than here! I'm going to copy you before the next time I go to the rheumi.

Hope you get some answers soon - I will keep my fingers crossed that it turns out to have a benign explanation.🍀

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This is like a whooshing heartbeat in the ears - worse for changing position, sometimes not there at all.

Don't copy me before your Rheumie, I'm hopeless, I give the GPs a monologue of information and my theories and they get completely confused or switch off. I am trying to train myself to be brief, give them a chance to digest it and then listen. I am a very bad patient! But I need to research everything all the time. It takes a special doctor to enable me to trust and do as I am told. Luckily PMRPro pointed me towards Dr Sarah Mackie in Leeds who ticks all the boxes and has the gift of listening. She is also interested and expert in PMR/GCA. Godsend!

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This is an interesting discussion. I have experienced both tinnitis and the heartbeat whooshing . Tinnitis constant, whooshing comes and goes. Will be interested to hear additional discussion.

J

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I have the same problem with physicians.

It took a long time for my GP and I to work well together. He kept telling me that I was "sensitive", a code word for someone who is hard to medicate or who has nonstandard symptoms. I told him I prefer to consider myself sentient. That dance continued until I finally told him I was spending entirely too much time thinking about how to talk to him and that I thought perhaps I would do better with a female physician. He actually acknowledged that he knew he could be hard to talk to. I did see another doctor in the health plan for a consultation on his recommendation. I decided to go back and we seem to have started over.

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Sensitive pah! Is it me or are doctors working in a much more tramlines way? Sort of stock answers and stock drugs for particular complaints. No interest in detective work and getting to the bottom of things, no joined up thinking, no intuition in use or bedside manner? My mum was practically in love with our family doctor, who smelt wonderfully of pipe tobacco. Happy days!

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Tinnitus is not unusual in both PMR and GCA - and there has been a study about ear problems in GCA and PMR.

And tell Sarah!!!!!!!

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I know I've got material from them, not had a chance to peruse it, just back from my travels. I will tell Sarah, now that I know it's a thing. There are a lot of weird things that come and go with this.

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PMRPro.....what was the ear study? I've had a history of eustacion tube dysfunction. But lately my right ear is pretty plugged. I have taking allergy meds.

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About whether people had any ear problems associated with GCA/PMR - hearing, balance, tinnitus and so on.

healthunlocked.com/pmrgcauk...

I think it goes on recruiting until the end of November.

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I am dealing with the paperwork now PMRPro. I offered to take part in the research alerted by jinsac and now prompted by you. I.e. Looking at hearing and other related conditions associated with PMR and GCA. I have had ear symptoms - Psoriasis and nasty associated infections for years before my PMR diagnosis and now this Pulsatile Tinnitus.

Thanks.

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:-)

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Filled out the initial questionnaire. What a vibrant lot you are! 👂

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I emailed a Susan Padmore and got information on the study and a questionnaire duly sent. I think they are on to something. Deadline 30 November.

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This is so interesting Jane! I didn't know it had a name, but I experienced intermittent whooshing sounds in my head / ears in time with my heartbeat, for a few months before I was diagnosed with PMR. I saw the GP and he thought it might be high blood pressure, but a week of monitoring my BP at home showed I have normal to low BP! No explanation was ever given and the subsequent PMR diagnosis took over and pushed other annoying symptoms into the background! I've been troubled less by it since I've been on pred..... interesting?

I'll discuss it with Sarah too - pity I saw her 3 weeks ago and don't see her again until 2018.

Whatever next?

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I had pulsatilla tinnitus for a long time. I developed large urticaria which was caused by Ramipril, a blood pressure drug. When I came off Ramipril my pulsatilla tinnitus disappeared. I should mention that I also have Ménière's disease. I still have tinnitus but it is no longer the distressing thump thump thump I experienced before. I sympathise. There were times when I felt almost suicidal because of it. It was relentless.

Liz.

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Hello Sheffield Jane, You've just reminded me that I did get this, but haven't for a good while, now. I can't remember whether this was before diagnosis or whether it was when I was on higher doses of Pred.

In the grand scheme of other things to worry about, I didn't think too much of it, at the time, but it seems it could be yet another delightful consequence of this ridiculous condition and its treatment!

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Hello

I have unilateral tinnitus. I have the annoying sounds and occasional heart beat too. I had mine before PMR diagnosis. At present it is v bad and I’m finding it hard not to notice it especially when I’m trying to go to sleep at night

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Poor you judi, I'm trying not to obsess about it, I have it in both ears but worse sitting up and standing so it hasn't invaded the bedroom yet.

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Prednisalone can cause raised blood pressure and blood pressure medication can cause Tinnitus. Ever felt like " the old woman who swallowed a fly"?

For those who don't know the old woman kept swallowing bigger and bigger things to deal with the last creature she'd swallowed.

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SheffieldJane, I suffered from this several years ago... all gone now thank goodness. I got temporary relief from the following procedure. Stand up and bend at the waist so your head is around knee level. Turn head to one side for about 15 seconds and then the other side. Straighten up. This worked for me for varying lengths of time, sometimes for 15 minutes, sometimes for half an hour, but it is not permanent. It was just such a relief to get rid of it, even for a short duration.

Hope this helps.

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Thank you for this advice - anything for a bit of control. Just tried it, although it is not too bad at the moment.

Did it go as mysteriously as it came?

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It got less and less and eventually disappeared.

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Thank you. 🤞🏻

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I thought my tinnitus had come back with a vengeance with the pred. Very annoying.

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Thank you for all these useful responses, will go to doc well armed.

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Tinnitus has become more of a problem to me, too, having worsened since PMR diagnosis. However, as I have had tinnitus for about 27 years I just felt I had to accept it. Now I have two tinnitus "sounds", one being the common whistling and the other a sort of droning noise, but the one that gives me most grief is the four musical notes running continuously up and down! I won't begin to describe how it affects me sometimes in the early hours but on the whole I have learned to live with it and am hoping that when I can get off the Pred, after taking it now for three years, maybe the tinnitus will lessen, even if it's only the "musical" one... Here's hoping!

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Thanks Lin-lou, isn't it strange ? I hope it goes away for you. I was oddly relieved that my pulsing sound was Tinnitus. I thought all sorts of worse things might be wrong.

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