Hi, anyone suffers from tinnitus , drives me crazy , cause me nausea and dizziness at times and the noise omg!!.. Specialists are sayng there's nothing you can do and they blame everything on lupus , meds etc . I found that when someone as a chronic disease , the illness gets all the blame and sometimes they don't treat specific conditions at that time .. They just do blood test and see if lupus its active , but sometimes it's nothing to do with it . .. I knew someone who had MS most of her life but end up dying of cancer completely unrelated to MS .

( I know tinnitus its untreatable but would be nice if they'd give me advise to how to cope with it)

12 Replies

  • Hearing aids can help tinnitus I have both big improvement with the hearing aids

  • Thank you .. But hearing aid at 47 😩

  • You would rather suffer you can get quite discreet ones now I got mine on the nhs the tinnitus was driving me daft there's no guarantee it won't return

  • I've worn heating aids since my forties. I've got tinnitus and hearing loss since I had meningitis. They're nhs very discreet and I can hear. What's the difference between having to wear glasses and needing hearing aids.?

    It's nothing to be ashamed of. I'd rather be able to hear than go through life missing most of the conversation and tinnitus being the overriding noise. It's just miserable then and for no good reason. They make such a difference and with the nhs cutbacks some areas are not going to provide them, so get them while you can. X

  • Hi, I have tinnitus and it drives me to distraction too I've been told there's no treatment either and I get the classic "well you do have lupus" comment all too often. I have learned over the years to block it out somewhat but for only a few hours at a time. I struggled to sleep but I now leave the tv on a timer to turn off after I've fallen asleep or my radio on low. I don't use earphone anymore found they made it worse. Sorry to hear your struggling and can't offer any better help for you

  • There are "hearing aids" which supply what is called "white noise" which helps distract from the tinnitus and I think there are other things that can help. Ask to be referred to audiology or go to a hearing aid specialist shop who can provide info.

    Hearing aid at 47? Some hearing problems have little to do with age - my husband had chemo that made him deaf at 41. As he said at the time "Deaf or dead? No contest!" Even small children use aids - if it makes life more comfortable what is the difference from wearing spectacles to be able to see better?

  • You're absolutely rite, thank you for the advise 🙂

  • They is an app called 'Relax M' have it on my iPhone but sure it's available on Android

    The free version has lots of different sounds and you select the one that helps you the best. You can buy a cheap speaker to go under your pillow so it doesn't disturb your partner. I had a hearing test and was told my tinnitus was caused by a slight lack of hearing in one ear so your brain listens to other noises inside your head and a hearing aid really did help.

    The free app is really good if you don't want to spend any money.

    Yes some medicine does cause it

  • Don't worry about the age side of it. I've had one since I was 35 :p Tiny little in-ear thing, not everything has to be the big behind the ear ones.

    Also try looking at sound pillows for night time - basically a speaker inside a pillow that can play "gentle soothing sounds. Mine plugs into this actiononhearingloss.org.uk/... .

    My tinnitus stated well before my lupus, but they did try blaming it on my radiotherapy which was about 8 year previous lol

    An ENT doctor at the time said to me only was to fully diagnose and find cause of it was an autopsy - i declined his offer. He said he thought I would :)

  • Hello maria68,

    Not able to post links ....but please check out the PAS ( pernicious anemia society) health unlocked forum ...and the link to B12 defiency and Tinitus ....

    Your blood test levels can appear normal .. But infact you might well be deficient .they are very helpful on the forum ..anything worth persuing x

  • I developed tinnitus as a child, I was about 9 years old. I had some hearing loss due to many repeated strep throats and ear infections. I think the damage to my inner ear happened back then as the tinnitus has never gone away. I suppose I have learned to live with it but when I was young I was very distressed as I couldn't tell anyone and kept it to myself.

    Now, the rheumatologist is t even interested in it and I have so many symptoms that point to lupus.

  • Yep I have it. Its always there but is worse at some times than others. When my iron is particularly low its much worse. Background noise helps.

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