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GCA and tinnitus?

Posted , 9 users are following.

Kdemers
Kdemers

I experienced a sudden hearing loss--actually everyone sounded like Donald Duck, and then I heard a pulsating sound, like a dishwasher rinsing for a long time.  It went away by the next day.  

After posting my experience I  found that what I had was Pulsatile tinnitus.  It is far less common than regular tinnitus, Information is scant, but one small study found that 4 percent of patients reporting tinnitus actually had pulsatile tinnitus. It often heralds a vascular condition, after all, not an auditory problem like tinnitus. The sound isn’t a ringing, but a swishing, pulsing, or thumping that is sometimes even described as a bird flapping its wings. Of course it fits with the beating of the heart.  And yes, it COULD be the GCA or Temporal or Cranial Arteritis I suffer from. Thank you Eileen and Audry for the warning of thye seriousness of what happened.  I am eager to see if anyone else has had this specific experience.

A woman named Emma Greenwood went on a quest to get whooshing, as she called it, recognized as a symptom separate from tinnitus within the medical coding system.  In the latest update to the codes, which took effect on Oct. 1, 2016 pulsatile tinnitus gets its own designation.

 It often heralds a vascular condition, 

0 likes, 14 replies

14 Replies

  • gina30088
    gina30088 Kdemers

    Posted

    Hi Kerry

    So interesting.I had this with dizziness  off and on for months before 

    I got full blown PMR/gca symptoms.

    Have had a little with decreases but resolves.

    I hope it stays away for you, its maddening !

    gina

     

  • joey_12298
    joey_12298 Kdemers

    Posted

    I am so glad you mentioned this. So sorry you have it! I too have this weird Schwishing sound. Especially certain ways I turn my head. I can really hear it when it is quiet. It is not all the time lately but I have lost weight so maybe that has helped. I have not been diagnosed with GCA yet but guess it is lurking in the background for all us PMR patients. My ears feel full & left ear hurts at times but ear doctor says I am ok. My hearing is not what it use to be & that can be aggravating.  Feels like I am under water. Thank you for the information. Every little bit helps.

    • Silver49
      Silver49 joey_12298

      Posted

      I am relieved to see you describing what I am also experiencing. I assumed there was a connection with PMR or steroids. I can cope with the tinnitus per se but I struggle and feel so frustrated when I am in company and cannot hear conversations. Does anybody have any tips or suggestions and does it eventually go? I have started to put the sub titles up on the TV in order to save increasing the volume. Thankfully, I don't watch much TV. I find it embarrassing to ask people to repeat what they have said and I miss so much of a conversation. Now I understand what it feels like for people with hearing loss. I hope this isn't permanent. Thank you so much for raising this problem as I had been considering doing so myself.

  • lodgerUK_NE
    lodgerUK_NE Kdemers

    Posted

    Last year we did a basic survey called 'Your Ears.

    There is a thread on it just put Your Ears in the search box at the top right hand side of this page.

    There have been further developements and within the next few weeks, we will be asking patients to take part in further research.  So watch this space.

    We will be talking, once again, to the administrated who run this site for their help once again.  I have no doubt they well help us.......

  • cindy63197
    cindy63197 Kdemers

    Posted

    This is very interesting because when I had PMR I had tinnitus, and I remember that it pulsed sometimes.  It was a symptom that drove me crazy.  Early on the doctor had me taking a combination of Pred and Aleve, (I changed from that doctor).  The Aleve exacerbated the tinnitus.  My son who is a pharmacist told me to talk to the doctor about quitting the Aleve, and upping the Pred dose.  That helped a little, but I still had Tinnitus for many more months, gradually reducing, I think as I reduced the steroids.  The doctors never understood how annoying this was.
    • EileenH
      EileenH cindy63197

      Posted

      I had tinnitus for the entire 5 years of PMR before pred - I put it down to having taking ibuprofen a bit and a few antibiotics, all of which can cause it. But after some time on pred I realised it had gone. Really dn't think it was coincidence - and now, I suspect, neither do the doctors interested in the study.

    • cindy63197
      cindy63197 EileenH

      Posted

      Wow, So interesting. You had a totally different experience. I wonder if it's the PMR that caused the tinnitus?

    • EileenH
      EileenH cindy63197

      Posted

      In the sense that PMR and GCA are just different points on an extended spectrum of the disease, yes. It suggests that arteries in the head and neck are affected, which is something more usually associated with GCA.

      But I don't think our experiences are totally different at all - both tinnitus, both PMR, both given non-pred medications. And I am fairly sure the pred sorted it out for both of us.

    • linda17563
      linda17563 EileenH

      Posted

      I have had a "whistling" in my right ear for the last six months, now I know what it may be related to.....I can tolerate it, but hope it dosen`t appear in the other one..... 

    • Silver49
      Silver49 linda17563

      Posted

      I have it in both ears but not whistling, more of a fizzing sound. I'm now at 3.5mgs so wondering if it will go as I thought it was the steroids. On reading the other posts here I'm beginning to wonder if it's the PMR. Is it possible that it could be withdrawal from the steroids? I live in hope!

    • linda17563
      linda17563 Silver49

      Posted

      I am at 10.5mg ish....trying slow reduction, but not getting too far .....have had PMR nearly 6 years.....so.....one wonders....
    • Silver49
      Silver49 linda17563

      Posted

      It must be difficult trying to come down and having it so long. I have a friend who had PMR for 15 years but it eventually went away so there is hope. I do hope it does not last that length of time for you. Everyone varies so much.
    • linda17563
      linda17563 Silver49

      Posted

      Thank you, maybe it burns itself out.....hope so.....it is difficult after all this time.....
    • cindy63197
      cindy63197 EileenH

      Posted

      My GP thought it was from the Pred, so I have gone along with that idea, and it seemed to slowly disappear as I reduced the dosage, but when thinking about it, it could also be that the PMR was also lessening. 
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