Since I started to get ill in 2016/17 with autoimmune conditions, I've acquired an impressive and still growing collection of loud tinnitus noises. Last time I made the mistake of counting them I got to 12 distinct noises and thought was best to stop and not know more.
They range from high pitch squeals, to low rumblings, to pulsatile whoosings and crazy spinning/churnings, and one which souunds how I imagine a ship's engine room might sound. And once they arrive they never seem to go. I seem to hear about four at any one time - often two in one ear, one in the other, and one sounds as if its in the middle of my head. When my brain habituates to these, somehow one noise seems to be substituted for another. I guess its simply that they are all there all the time but the brain switches its focus.
Last week a new one appeared. At first I thought it was the beeping of a lorry reversing outside but to my increasing despair it was still there when I shut window. This is so loud that I hear it walking along the main road at rush hour. I find the thought of all these noises (plus probably more) every waking minute "forever" kind of terrifying.
At the moment, I'm really struggling. Im finding it hard to relax, work and sleep. I cant drown out these noises (as too loud and multi-toned) even when I try putitng on four youtube videos at the same time - e.g. bird song and river, ciccaddas, Beethoven, and talking.
ENT have been worse than useless. I assume that these noises arise from the autoimmune and from associated conditions e.g. pulsatile ones are mostly likey result of neuro-vascular events like TIAS. But rheumatology have been equally useless.
I just wanted to vent in friendly environment. thanks.
bw
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robertbob
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blimey that sounds absolutely horrendous .. you must be fed up to back teeth with it .
My stepdad had heart attack and developed tinnitus and husband tinnitus after massive colitis flare . There was an interview in the BBC news other day and I’m sure they gave a helpline .. it’s definitely worth a google .
If you are in the UK I’m pretty sure the NHS can offer talking therapies for it and I had heard the wait wasn’t too long . I know talking about it is probably the last thing you want to do but you never know it might be worth a try .
I can’t even imagine how horribly overwhelmed you must feel. So glad you vented .
Take care and I get you’ll get some good ideas from here x
Thank you SOOOO much for posting that link! I've been struggling with moderate to severe (at times, usually at 3am!) for two years and I've loaded the App mentioned in the article. It's excellent. I'm so grateful to you! 😀
Morning, I fully empathise , although my main issue was the feeling of dizziness and imbalance. I found a group on Facebook where a guy has developed a programme that might help ? “ Curing TMJ,PCS, Fibromyalgia etc by curalistic” Helped me as did a cranial osteopath. Hope you get some reprieve soon
Thanks a lot. I have been diagnosed with TMJ disorder (probabaly result of autoimmune damage to that joint) and think that about four of the tinnitus sounds are result of that as they get louder/quieter depending on how I move my jaw. I will look up the curalistic thing.
Hi Robertbob, have you had a referral to audiology? I found them most helpful and they gave me lots of information and advice. I still have tinnitus, but it is "liveable with" with a few modifications. Good luck 🍀 x
Thanks a lot for your message. Hope doing ok with the tinnitus and in general.
I found audiology and ENT not great tbh. They did a hearing test but didnt seem interested in investigating why I had so much tinnitus, despite some of it being pulsatile and so being indication of possible underlying/treatable pathology.
It was like they made no distinction between a bit of tinnitus acquired overlife time of say loud music and a dozen tinnitus noises which developed in the space of two years without once stepping into a night club in that time or being on a battlefield. And the attitude seemed to be "you just have to learn to get used to it". But I find that hard when it keeps getting worse. Sorry, I went on a rant/vent again!
Awww, I truly feel for you! That mist be so ha d :(. Are there any complementary therapies at all? I hope and pray that you find some relief soon! Lots of best wishes for healing.
Thanks so much for your kind words and thoughts. Ive not really tried complimentary therapies but is something I might look into. I know that I notice it less when more relaxed and more relaxed when i notice it less and so I guess therapies to help with relaxation would make sense.
Hi, I know how you feel, I have a constant whooshing and ringing, and now this pulsating like I can hear my heart thumping, and sometimes it is in rhythm with my ears. Mine is getting worse, especially when I am flaring or unwell, so I really do feel for you, xx
Thanks so much for message and am really sorry to hear that your's is getting worse. In theory they can identify the cause of pulsatile tinnitus in majority of cases and in some of these can treat in way that alleviates. But Ive found it hard to get ENT to do basic investigations such as ascultation i.e. using stephoscope to try and pinpoint where the noise is comming from.
Hi Robertbob. I’m sorry your tinnitus is so bad. I’m in US. We are referred to ENT. Mine is always a background ringing but become rabid with certain medications. Especially NSAIDS. The dizziness and imbalance may suggest a different but related disorder? I do not have any solutions for yo; wish I did. I take myself away by swimming under water and sometimes I get relief of silence. Best wishes
Thanks a lot for your message. Swimming underwater sounds like great past-time and in particular if helps mask/distract from the tinnitus. I use to go snorkling in West Wales as a kid; and though there was nothing as eye-catching Caribean rainbow type fish, it was fascinating and memorable.
I too have tinnitus, it’s more pronounced when my SED ( inflammation) is elevated. I feel like I’m going crazy especially at night when it’s quiet. I place my earbuds in and listen to the rain. I couldn’t begin to imagine how you feel. You are having it way worse than me. I’m sorry that ENT can’t do more to help.
Thanks for message and kind words. Yeah, I think inflammation can make it worse for quite a few people. And night time can be hardest for sure. I have quite often fallen to sleep to tropical rainforest sounds and sometimes woken-up and thought it was raining outside until heard something like sound of parrot (which we dont get many of in South Wales!).
Hello, I just wondered if you associate the tinnitus with not hearing as well. In 2014 GP sent me to ENT due to my reduced hearing, tinnitus and dull ears on examination. Told hearing range normal, symptoms probably seasonal, and prescribed Beconase aqueous Nasal spray, it helps but still get bad Tinnitus at times. ENT consultant also arranged MRI of head as he wanted to rule out something specific to SLE. Also, I found some of the noises, the whooshing especially difficult but think that is due to fluid in ears which spray alleviates. I also used to hear noises in corner of the room. Very weird and frustrating but hope you find some resolution.
Thanks a lot for message, and apologies didnt answer sooner.
I dont think its that unsual to have tinnitus with normal hearing. Also there is an association between SLE and tinnitus. MRI sounds like was good idea as can rule out problems like accoustic neuromas.
I hope tinnitus is not to bad atm. In theory, gets easier for most people over time as habituate to the sounds.
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