Severe tinnitus and sensorineural hearing loss

[LRM001]

(Moderator's note - this post contains suicidal ideation, which may be upsetting to some readers)

I have recently been diagnosed with granulomatosis with polyangiitis as a result of an autoimmune disorder and have been suffering with tinnitus since the 17th December 2023.

The tinnitus is often raging and sounds like a jet engine at full speed..I'm sure there is a better term for it. I have seen 2 separate ENT specialists who actually done very little and I have had 3 hearing tests which all revealed my hearing was OK. My vasculitis specialists believes my illness is isolated to my hearing and I am awaiting drug infusion when they finally get to my number in the queue. Is anyone else experiencing the same issue with tinnitus as I cannot get it to calm down after 6 months of trying. It affects me every day and I have often thought of just ending it all as struggling to cope.

[TinnitusUKPat Partner]

LRM001 - I'm sorry to read that you're struggling. I can't offer much feedback in relation to your cause of hearing loss as its not something I was familar with prior to reading your post.

Vasculitis UK have a great assessment of the prognosis for this cause of hearing loss and as with many things, tinnitus is seen as being symptomatic and something which can improve, either via habituation or therapeutic options - vasculitis.org.uk/living-wi...

That being the case, I hope you see an improvement in the situation when your vasculitis treatment is put in place.

[SeashellSara]

I'm sorry to hear how badly your tinnitus is affecting you. I know how it feels although each of us is an individual with all of our different histories. The important thing is to keep going hard though it is. I've been reading about the sympathetic nervous system and deep breathing assisting relaxation so I'm going to make an effort to try this. Meditation also is good apparently. It can be a problem motivating to do these things. Maybe I'll write notes to myself to do them. I don't know if this is any help. I look at the situation from my family's perspective if I were to end it all. I've known how lives can be very badly affected by feelings of abandonment when this happens. See if you can get counselling through your GP. Mine starts today after a long wait. Sorry I can't help any more.

[doglover1973]

Hi there. I'm really sorry you feel this way. These thoughts aren't unusual in the early days of T . I remember thinking about the least painful way to go but I didn't act on it. Thankfully. T gets easier to cope with as time passes. I still have very loud T in my deaf ear but manage to live with it surprisingly well. There's every chance you will too. We are incredibly adaptable as human beings.

[Bluerose57]

sorry to hear that it’s so bad

For the last 2 months mine been very invading and can’t even hear tv to distract myself

Stress, salt , E numbers , alcohol caffeine all make things worse so try cut back on these

My dr started me on mirtazipine 2 weeks ago and omg it has made such a difference

Please discuss with your GP , and ENT consultant couldn’t give me anything to help

Good luck

Really hope it improves soon