Pulsatile Tinnitus ON and OFF triggers Autoimmune condition?

[mmmgggsss]

So this is only for Pulsatile Tinnitus....

Looking to start a thread for PT people to explain and share thoughts on potential triggers for those who, like me, experience periods of silence and then out of seemingly no where PT. My background is that I am 49, normal weight, healthy and have had all the tests, scans etc...all normal. I'm in the Boston US area and have had the best DRs out there. I had PT 8 years ago and it lasted 3-4 months and went away. Came back in May 2020 and I have been suffering on and off since. Only left side and in perfect synch with my heartbeat. Its never been unbearable but can vary in severity and duration. It has been trending better over the last few months. I have it less than 50% of the time and never notice it when I am active and/or around noise. Mostly I notice it at night and mask it with a sound maker or the TV which works well for me.

My DRs have given me different "theories" on what the cause could be but none of them make sense since my PT is so variable. I have prolonged periods of total silence lasting days and a few that have lasted 1-2 weeks. I have had periods where its ON and OFF during the same day, so its totally inconsistent. This inconsistency is the oddest part of this, and it has gotten me to really focus on what the triggers could be. Since its inconsistent it cant be some of the more common theories like hardening of an artery or a partially blocked vessel, leaking vessel, aneurism or tumor- all of which I am thankful for. Even the location of a vessel or a high vulva bulb etc... probably wouldn't make sense either... all of these anatomical causes wouldn't fit a condition that varies this much they would seemingly result in this sound being there always. Also since its just in 1 ear many causes of the sound would have to be in both ears.

So one theory I have is that this could be a symptom of an autoimmune disease, where your body's immune system incorrectly attacks healthy tissue. Other autoimmune diseases such as MS, Lupus, Eczema etc...all fit a similar pattern of turning ON and OFF and have periods of remission. Could it be possible we are hearing the effects of our immune systems damaging something in our hearing chain; auditory nerves or within the brain itself? It seems to me that something like this would also be undetectable with the usual tests we have all undergone.

Of course some of the more popular ON and OFF triggers which have been thrown out there may be valid ( eating, stress, teeth clenching, not enough sleep, sleep apnea, jaw clicks etc...) Curious what others think or are experiencing with intermitten symptoms?

[Gwynydd]

I started to have pulsatile tinnitus in July 2018 in the right ear following a virus which tilted my eardrum but not the normal way. It went away for a month in the September. I only had it at night. It then returned. I had all the usual scans and checks and was told everything was normal. I was told however that I was wonky. My teeth were not inline with my jaw and I then discovered a lump on the left side of my upper gums which turned out to be a chronic abscess. I had a tooth removed. In May 2019 the tinnitus suddenly stopped. I do have a fullness in the right ear and my hearing can be a bit muffled. I use a nasal spray at night and am now considering hearing aids. I am now 81 years and never considered habituating when I had the tinnitus as I always felt that was not the answer. My audiologist agreed. I wish you well in your research. In this health problem I always believed one size does not fit all. Pulsatile tinnitus is different from tinnitus and can be managed in a different way.

[jacobite33]

Mmmgggsss

Developed pulsate tinnitus in my right ear 5 weeks ago but I think that was medication related as it stopped after I stopped taking the meds.I started suffering from tinnitus since 2016 in my left ear to start then a year past in January in my right ear along with it getting worse in both ears.I have had a thyroid problem since 2010 so maybe auto immune could be the cause to an with me too? I think a big problem for me though is cervical neck issues cervical spondylosis I am told obviously that could be tension with cycling.Went for an AtlasProfilax session last year and I will be totally honest here I thought it was a waste of money after the two hour session! When I got home and my family noticed a big difference in my neck movements stance and walk.I walked straight upright like a beanpole and even noticed a big difference taking the stairs.I felt my legs were moving and pushing right beneath me and my back was straight and my head up.My shoulders and head weren’t slouched over and dragging my legs as I used to do.The most important thing though was the clarity of my hearing really improved and they never felt blocked! Now the tinnitus never left but I could honestly hear more things beyond what I was used too in the background noise.The downfall was I went for a swim four days later and jerked my neck and it all went back to where I was initially.Then lockdown began or I would have been back for another treatment with a different approach after.So was it a release of all the tension and better blood flow circulating around my ears? Would the tinnitus have eased more or even ceased through time? Time will tell as I will be going back again when this lockdown eases.Could be a possibly angle for you maybe?

Hope it helps take care and stay safe!

[Mille23]

I dont have pulsatile tinnitus, but tinnitus 24/7 and an autoimmune disease. So I like your theory about auto immunity. Reading everything about auto immunity I came across the diagnosis Autoimmune Inner Ear Disease. Maybe you have heard of that already.

[mmmgggsss in reply to Mille23]

Thanks Mile23 I will check that out. The last 2 weeks I have had Covid and my symptoms disappeared totally. Im healthy now and the symptoms are still gone so that also correlates with autoimmune if my system has been pre-occupied.