Tinnitus

[Melaxx]

Hi, any tips how to cope with tinnitus , lately I had it very badly and I find it unbearable, I feel like banging my head against a wall , I don’t know what caused maybe the hydroxychloroquine I went up to 400 mg to see if would made any changes to my tissues inflammation but no changes so far or could be some nerve damage I had some tests for nerves function and in a couple of weeks a biopsy . I had tinnitus for years but recently is very loud and in both ears .

This lockdown has been very bad for my health, missed lots of checkups , tests, messed around with meds doses , I think has made a permanent damage on my muscles and the ability to walk normally without feeling exhausted and literally incapable to go up the stairs.

Take care x

[happytulip]

I get tinnitus constantly, especially bqhen I flare.

I am in agony tonight so can't write much.

There are machines that help which an audiologist can give you.

In the meantime if you have an 'alexa" thingy, get it to play wave sounds or there are free apos that you can download and listen to to drown it out.

Earplugs make it worse. I was told that they are a big no no.

Will try and write more tomorrow x

[eekt]

Hi Melaxx, tinnitus could be a sign of SLE-related hearing loss (ncbi.nlm.nih.gov/pmc/articl..., which some studies show to be very common . My rheumy refuses to accept such a thing exists, but a good doctor would would refer you for a hearing test, prescribe a week of steroids with another hearing test to follow to verify if the steroids were effective.

It's a listed potential side effect of HCQ too.

Hope you find a way to reduce it as it's horrible xxx

[Tbrz]

I really feel your pain, as I have noticed my tinnitus has got worse over this lockdown period. Sometimes my head feels like it is vibrating! Before my condition was diagnosed (2 years!) I was constantly having sinusitis which got progressively worse so that I was hospitalised, I lost my hearing for 6 months had bleeding from ears on multiple occasions, so I do believe a lot of damage was done. My consultant believes this is one of the long term issues I will have to deal with ☹️. People do not understand how horrible it is to live with tinnitus, it has affected my concentration, affects my sleep and when it’s really bad my quality of life. I long for quiet, which you never have with tinnitus! I need other sounds to distract me from the constant noise in my head otherwise I would go mad, but sometimes, and more recently frequently, the tinnitus is even more present and is getting me down. I’m afraid I don’t have any miracle cures, don’t think there are any, but I do think it’s nice to see other people going through the same thing.

Good luck, I hope thing improve for you.

[Melaxx in reply to Tbrz]

Thank you, is comforting to know I’m not alone 😊

[Tbrz in reply to Melaxx]

I was pleased to see you original post, as I had been suffering recently, but I’m always a bit shy/ think I’m imaging stuff to ask if anyone else has the same problem - so thank you. The worst thing about tinnitus is people obviously can’t see it and really don’t understand how low it can make you feel. As I said it gets so bad, that I feel my whole head is vibrating it’s horrible and makes me feel awful. Maybe, the recent COVID-19 concerns have made things worse, I know if I get stressed or anxious then my condition (vasculitis) feels much worse. One thing I do find helps is to get outside for a walk, that really helps to dampen the tinnitus noise, or me being aware of it! Anyway take care, it’s a horrible condition.

[Melaxx in reply to Tbrz]

This forum is fantastic , every time I’m down or have doubts about our complex condition I always found help. Thank you everyone 😊x

[Krock1]

I have had tinnitus for decades, long before my diagnosis of mixed connective tissue disease. While I am taking hydroxychloroquine, I have not notice a change in the level of tinnitus since I started the medication.

[soul22]

Hi sorry see your suffering bad with tinnitus.

I have lupus rheumatoid arthritis fibromyalgia raynaunds.

I started to suffer tinnitus after 3 head injuries so loud could not sleep.

I'm in London so finally my ear nose throat specialist referral me to a tinnitus specialist team.

I'm trying sound therapy it's really helps a device with soft sounds I put in ear at worst tinnitus times.

I also do mindfulness at bedtime using deep breathing I learned this at a hospital fibromyalgia group last summer.

I use you tube videos 5 minutes to sleep.

Other tips I can share my team told me about are.

No caffeine.

No phone TV before bed.

Use mindfulness to relax. Listen soft music when tinnitus bad distracts you from it helps me to cope.

Lack sleep exposure loud noise caffeine all flare mine.

Do recommend you try.

There is a tinnitus UK charity aswell.

I had alot of tests.

I have permenant visual postional vertigo from my head injury with hypercausia a sensitivity to sound.

Hoovering for instance sets my tinnitus off badly. Hugs

[Melaxx in reply to soul22]

Lots of advise , thank you 😊 x

[soul22]

Most welcome

[Smacdab]

Hello- All of the sudden I started having tinnitus at night. Swooshing sounds in either ear. I live in the US. I was prescribed promethazine 25mg when I was diagnosed with vertigo in the past after a whiplash injury. It actually worked for me and I slept through the night. I pray you get better soon.

[Melaxx in reply to Smacdab]

Thank you 😊

[soul22]

I'm on Betahistine mine started after several head Injuries.

New gp thinks menieres discease. How you doing. Your welcome hunni for tips.