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GCA SUFFERERS -HAS ANYONE HAD TROUBLE WITH HEARING ?

Posted , 13 users are following.

Flutterbie57
Flutterbie57

I have read that GCA can affect other arteries than those to the eyes. I have had the frontal dull headaches for weeks, and continue to have the headache even though I have been on Pred for a couple of months. 2 days ago I woke with really blocked ears - tried sinus remedies, gradually during the day hearing almost returned to normal. Lunch time today, both ears blocked badly again. It was sudden onset and is getting worse. Have never had this problem before. (unless swimming in the surf) (which I havn't been doing lately ) Has anyone else suffered with this problem ?

2 likes, 47 replies

47 Replies

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  • vickie94693
    vickie94693 Flutterbie57

    Posted

    Yes, I have problems with hearing but it came on gradually. I have been told that GCA does not cause hearing problems, only eyes. When I shake my head I hear a sound like the sound of a tuning fork. My ears seem as you said, plugged. I feel my hearing is caused by the GCA but time will tell what is found out by those doing research. I would be interested to hear what is happing with you and if your hearing problem progressed or got better.
    • EileenH
      EileenH vickie94693

      Posted

      Well, whoever told you that GCA doesn't cause hearing problems is wrong. If you google hearing loss and gca you will get several links mentioning it - and some are from the early 1980s, it isn't a new concept. It is logical enough - if the arteries supplying the optic nerve and the jaw are affected then it is likely the artery supplying the ears will be too!

      There has recently been a survey taken involving a few hundred GCA and PMR patients - done as the result of discovering that 3 out of 4 GCA patients in a large PMRGCAUK support group in the north of England had hearing and balance problems since having GCA. The consultant rheumatologist was surprised at the number and the group then organised the survey and found funding to have it analysed. 

       

    • vickie94693
      vickie94693 EileenH

      Posted

      Thank you for the information. I would like to know more about the support group in England. It seems other countries are ahead of us in knowing the cause and cure. I have been on prednisone for 15 months and trying to lower it. So far I can go to 12mg and have visual symptoms if I go any lower. I love to do research so any information on GCA you can toss my way would be appreciated.
    • EileenH
      EileenH vickie94693

      Posted

      No-one knows the cause and there is no cure - you have to know the cause to develop a cure (except finding it by accident but it would be looking for a needle in a haystack!). All the work being done is by international groups - in the US as well as in Europe. In the meantime there is at least a drug that manages the symptoms pretty well for most people and protects you from the threat of loss of vision.

      If you got to this post

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      you will find loads of links of information about GCA, the support groups and forums in the UK and living with GCA and PMR. 

      To be at 12mg after only 15 months is not bad going at all - be patient. Perhaps reading the "Bristol paper" in that link I gave you may help you understand. 

      I think there is a community in the USA on the Vasculitis charity site - I googled "gca community vasculitis organization USA" and got links to the vasculitisfoundation site. I can't give you a link here - it will go for moderation. I have no idea what it is like - most Americans say there nothing like our communities. We did try to get one going but it was very slow - everyone here seems to prefer joining in the UK ones!

  • sally30484
    sally30484 Flutterbie57

    Posted

    Hi. I am wondering how you are doing and did you hearing problem get resolved? I am feeling a blocked ear now for over a week. I am very worried. They say my inflammation marker are normal noe. I have been on prednisone since October for for PMR.
  • sally30484
    sally30484 Flutterbie57

    Posted

    Hi again. I went to the new rheumatologist today and he said I don't have GCA. However I did have an ultrasound taken of my temporal sub clavicle and carotid artery and I am waiting to hear now the results.

    He did not want to hear about other people having blocked ears etc. His mind set was ears aren't involved....oh well I guess I was expecting that.

    He wants me to take an antihistamine and use a nasal spray which I will try.

    I am having a flare up sore throat on the same side as my blocked ear so I am wondering if that might be causing the ear to be inflamed. I have acid reflux and all the new pills are raising havoc.

    This forum is such a wonderful support. I realised no one understands what we are going through other than the folks here. Thanks so much.

    • Flutterbie57
      Flutterbie57 sally30484

      Posted

      Hi Sally

      I do hope that you get relief using the nasal spray and antihistamine. 

      Yes, Dr's certainly have their own ideas. Eileen on this site is a fountain of knowledge and I always look on here for advice, because, as you say, only we understand what we are all going through.

      Having PMR is a mystery tour, and there is always some new health problem popping up. I did suffer a lot of reflux early on too, but that seems to have improved over time as well.

      Good luck with your journey.

       

  • sally30484
    sally30484 Flutterbie57

    Posted

    Hi again.. Has you blocked ear cleared up?Mine seems slightly better in the past two days after being so blocked for a month.
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