Wondering if anyone has had sight and/or hearing deterioration with GCA. Diagnosed in August with GCA on right side, since then my sight in right eye has got worse, (wear glasses and had change of lens in June) and have noticed that my hearing on same side, which I've never had an issue with, has become quite bad, can't make out what people are saying.
Did you know there's a survey about hearing and PMR/GCA?
https://patient.info/forums/discuss/research-project--535782
My vision is a bit blurry but, optometrist says my distance has improved. My hearing has gotten bad on the left side which is where all my symptoms with GCA was.
Following your discussion.
Hope you get answers and relief
I have GCA there are : 3 years and do not have your symptoms though
Hope you get answers and relief!
Wishing you the best
iellen
Having GCA there are 3years I do not experience what you describe.though
Hope you get answerss and get. better!
Hope you get answers and relief
Thanks for that, just sent email to take part in survey. So obviously hearing is an issue with GCA if it's being looked at. Thanks again!
That's interesting your distance has improved! Did you see the link about the survey about hearing? Have you taken part in that? Link in previous reply!
Thank you iellen32 xx
Before I was diagnosed with GCA I came down with double vision in my right eye along with horrible right side temporal head pain. That was in Feb. of this year. My head pain was not a headache. It was constant, and no pain med made it stop. I used ice packs a lot, wanted to think it was helping, anything for some relief. The eye clinic hired a double vision spealist in Sept, which I was refered to immediately. During that period from Feb to Oct I was told to wear a eye patch over that eye. Spealist showed me a little trick of putting a small clear piece of tape over the eye glasses lens close the nose that helped with the double vision. I now have a stick on prism on the lense of the affected eye. I have had no problems with hearing.
I just sent an email, thanks.
That's a horrible side effect of GCA to have and no help for 7 months!! Hope the prism helps. That pain is something awful isn't it, wouldn't wish it on anyone! Hope things have calmed down for you now, thanks for the reply! Mind yourself!
How strange - I've just written a post about this on another thread! Here's an excerpt from it:
" it isn't often taken as part of GCA but it is currently the subject of a survey being carried out, originating in the UK but for any nationality patient to complete:
https://patient.info/forums/discuss/research-project--535782
Medscape says
"In 2003, Amor-Dorado et al[60] reported a previously unrecognized high incidence of audiovestibular disturbances such as vestibular dysfunction and/or hearing impairment in their GCA patients."
(Amor-Dorado JC, Llorca J, Garcia-Porrua C, Costa C, Perez-Fernandez N, Gonzalez-Gay MA. Audiovestibular manifestations in giant cell arteritis: a prospective study. 2003)
So as someone else has already said - they wouldn't be doing the survey if there wasn't some link. What happened was that at a support group they discovered that something like 3 out of 4 GCA patients had some form of hearing/ear problem since their GCA. Some weren't actually aware of it until they thought about it - but it was there. But as you see from the Medscape quote - it's been known about for at least 13 years.
The sight thing may be the pred - it can affect your vision too and quite a few people have complained about changing prescriptions over time and blurriness which has been ascribed to the pred by their doctors/eye specialists.
That's very interesting about the hearing aspect. For me it wasn't a tangible hearing loss I just noticed I was asking people to repeat themselves more often, which would never have been an issue before. I wonder does it rectify itself as we go through the journey with GCA? If the sight issue is linked to the pred, do you think it's the case as with other pred side effects that it normalises as the dosage is reduced....hopefully!! Thanks for your reply and link!
I think most people with the sight issues found they improved as the dose reduced although there are some who have a permanently changed prescription. My glasses have wandered up and down my nose - I have distance ones and computer ones which now double as reading glasses (the advancing age accommodation problem strikes at last!) over the last 12 years - but it is far cheaper than buying new ones which many have done and discovered a few months down the line they needed yet another pair!
I don't know about the hearing side - if the deafness is due to nerve damage as a result of poor blood flow, which is the case in GCA visual loss, then I doubt it would improve. And of course - we are at an age where our hearing will start to deteriorate anyway. Though mine at present feels far too good - the slightest thing at night wakes me and I feel my husband is shouting a lot. He does have hearing problems and has gold-plated hearing aids which have made a major difference but I'm not convinced they are working as well as they did at first.
Gold plated hearing aids, very fancy!! Could it be that maybe selected deafness is setting in for your husband, it seems to be a common affliction for men😂 Maybe you should incest in ear plugs for nightime disturbances! Well I suppose if my hearing is nerve damage and it doesn't get any worse, it's livable with, could have done without but there you are! I can see (😂excuse the pun) what you mean about changing lens frequently, would be very happy with improvements on reduction of pred and mayb in the meantime will juggle with different specs and hope for the best! Thanks again!
Oh dear, obviously that should be INVEST in earplugs😳
I meant gold plated price - not the lug-plugs themselves! We pay the full price here in Italy, no NHS-type assistance.
He's had selective hearing for over 20 years - since the chemotherapy destroyed his hearing. Never ceased to amaze me what he COULD hear when he wanted to...
I was diagnosed with GCA in June, affecting my left hand side. I too have had problems with my hearing and pain in my left ear and around the bone at the back. I also developed pulsatile tinitus in the left side too. I was referred to a ENT specialist who thought it was nerve damage from the temporal biopsy. The tinitus has settled, but some days I still have the pain and although I can hear I'm sometimes confused as to what people are saying, I'm not sure if that will make sense to you. Wishing you well on your journey.
Do please participate in the survey mentioned in the first reply above.We need 500 responses to make it valid - and GCA sufferers are rare brids...