I’ve had intermittent tinnitus for a few years. It has always been mild and a kind of whooshing noise. Maybe for a day or two a month. Not too bothersome and it never distressed me as I knew it would be temporary in nature. I have Sjögren’s Syndrome and I have some hearing loss in both ears for which I sometimes wear hearing aids. However about 3 weeks ago out of nowhere the tinnitus appeared - this time much louder and 24/7. Now its a throbbing very high pitched whine. Is this what ’pulsatile’ means? I’m trying to ignore it ( yeah, right) but it’s permanently intrusive and upsetting. I’ve got an appt in two weeks time with an audiologist but thought I’d try here first for some info from fellow sufferers. Thanks.
Ordinary or Pulsatile tinnitus - British Tinnitus ...
I know what you are going through, I am bothered 24/7 and my tinnitus will not go down. It is a hell. I have also a feeling of pressure in my ears in combination with the tinnitus Sound. Do you Think that there is a connextion between Sjøgrens disease and tinnitus? I have an autoimmune disease, the doctor has still not a name for that yet. I have come across autoimmune inner Ear disease on the internet. Sjøgrens disease is an autoimmun disease. Or do you know the reason for your tinnitus?
I am now in treatment with prednisone., suspecting me of having an autoimmune disease. It seems to have made my tinnitus getting louder.
Yes, I had read that Sjøgren's can affect the ears as well as nearly every other organ which is why I thought that the tinnitus was normal. It was always minimal and tended only to appear if I got stressed or sick. But this pulsatile 24/7 tinnitus sounds like a high pitched throbbing dentist's drill, and it's really getting to me now! I went to my GP yesterday about it.
He listened to my neck through the stethoscope, to look for signs of 'turbulent blood flow' which is what sometimes causes pulsatile tinnitus. But that was all clear. My BP is always on the high side of normal, and even though I've been on BP tablets for 15 years or more, it's never been properly controlled. So he prescribed me a diuretic tablet to help get my blood pressure down (they like it to be around 120/80, and I'm normally 140/85 or above).
If this pulsatile tinnitus is Sjogren's related, well, it's possible that I've got it for life. But like so many things with Sjogrens, symptoms come and go. I hope it will go, but I have to face the possibility that it will stay.
Anyway, I'll see what the audiologist reckons when I see him soon. I've never been on prednisone, so I don't know much about it. My SS was diagnosed in 2005 by a lip biopsy which showed damaged salivary glands. At the same time I was diagnosed with Hashimoto's thyroiditis, and have been on thyroid medication since 2005 too. Honestly, if I had the choice of winning $50 million on the lottery or having better health I'd kiss the money goodbye.
I do hope that you get a definitive diagnosis of your autoimmune disorder soon Mille23. It's tough waiting to find out what is wrong when we feel so terrible and unwell.
When I first got diagnosed I was depressed. But it got better and now I accept the reality and find I manage pretty well really. The SS doesn't really stop me having a great life. Now and again I get 'flare ups' and strange symptoms, but all in all, it's alright really. I wish you all the best. This is a great website. I've had lots of info and encouragement from members on the Thyroid and Sjogren's Community. Take care, Tracy
Thank you very much for sharing your story. I too had a lip biopsi, but it was negative, so I never ended up with Sjøgrens disease. Even though one of the Sjøgrens blood test was High ( Ssa ) which indicates problems with salivary gland’s. I will ask the audiologist next time I see him in november , if he has come across auto immune diseases and tinnitus. Unfortunately we still dont know all the reasons to tinnitus. I Think there are many.
Good luck and take Care. Mille 23