Tinnitus

[Razoo]

Does anyone else have ringing in the ears? Is this linked to Lupas? I've had it for 10 years, but am used to it.

[Suzie]

I think it is, I remember when mine started. After sun exposure which caused the blood vessels in my legs to ooze. It was then followed by a stressful period which I think just exacerbated it. That was 15 years ago, and it will wax and wane with flares, especially sun exposure. Beacause the tinnitus mechanism is still not fully understood it is very difficult to say positively that it is connected. However it is generally understood that a high proportion of patients with auto immune diseases experience tinnitus. It is a false myth that nothing can be done to help people with troublesome tinnitus. If it is a problem for anyone else reading this, do seek a refferal to your local audiology dept for counselling.

[Razoo in reply to Suzie]

Thanks Suzie, I did have tests, they put Grommets in my ears which stopped the clicking sound but not the Tinnitus, when the Grommets fell out it all came back again.

[jvillage]

I don't know if it is but I have had it for the past four years, sometimes worse than others but always present.

[Liberton]

Hey Razoo,I have suffered from Tinnitus for over ten years. I have SLE and was told that the Tinnitus was most likely because of the Hydroxychloroquine tablets I was prescribed. One of Plaquenil tablets side effects is ringing in the ears.

I don't know whether you are taking this medication but if you are this may be the cause of your "ringing in the ears"

[Taurion in reply to Liberton]

Hi liberton, I am on Hydrox & I too suffer with 'ringing' in my ears! Thought I was going mad - glad to know I'm not! Thank you for the enlightenment of the consequence of these tablets.

[jamg3916]

I have Tinnitus constant 'singing' which can get louder and more intrusive. I have Fibromyalgia as well as Lupus and it seems both can have this as a symptom. There are some not so invasive strategies that involve providing constant sound to mask the Tinnitus. I have found the best solution for me is to always have background noise. I have tv on in the day and listen to the radio in bed, I put it on a timer so it goes off after an hour or so. I have gradually adapted to this and seems to be the most successful for me.

[bestbuddy]

I have had it since the age of 9...I was frightened as a child by the loudness and intrusiveness of it all. I couldn't tell my mother for a long time and only told my siblings. It was then they found I had some hearing loss but it fell by the wayside when I went to secondary school.

am nearly 54 years old now and although I dislike it, I cannot say I ever remember a day when I didn't have it and what it is like to have a quiet head. I suppose I have learned to adjust to it.

Now, it makes sense with all the other autoimmune issues I have with my health.

Best wishes

BB

[chrisj]

Can be a side effect of drugs as well

[permanentgrowingpain]

hi yes i do and get attacks of labyrinthitis as well ringing as i type lol i wake with it in the morning and it does recede most days but it wild when ive got labrinthitis

[Suzie in reply to permanentgrowingpain]

Hi, have you had your vertigo assessed by ENT or an Audiological Physician? It is rare to get more than one attack. Impossible to get multiple attacks of labyrinthitis . The most common cause of recurrent vertigo is migraine. You don't have to have a headache with it. Interestingly my attacks of vertigo stopped when I started hydroxy, so I wonder if the diagnosis of vertiginous migraine was correct or some kind of auto immune problem, or maybe they are one and the same?? Nether the less, if it is migraine related, migraine medications stop in the vertigo in its tracks. Good luck.

[permanentgrowingpain in reply to Suzie]

doc says its crystals in labarinth that causes it hence reapeat attacks

i dont know but its nothing compared to my fybro arthritis and disc issues ive given up gettng tests you get diagnosed then jhave to live with it so why bother and tired of seeing consulatants

it does happen a lot if ive had an virus

[permanentgrowingpain]

and forgot to mention codiene sets mine of into the outer limits zone

[Taurion]

Hi tinnitus, I too suffer with this! I'm glad I came across your post as you have now confirmed I am not going crazy! Hope you/we are able to get some relief from this soon.

[Razoo in reply to Taurion]

I can assure you your not crazyTaurion, we all have that much **** going on with out bodies, youve every reason to think you are, we are warriors and we stand and support each other. Hope you're having a great day.🍀❤️

[Liesel]

Have you been to your doctor yet. If he can't do anything try and get a second diagnosis

Liesel

[milkwoman]

I have it and I really can't recall if I had it before I started taking hydroxychloroquine (but I've become aware of it on the last 6

Months or so). I only notice it at night and some nights it is worse than others. I have SLE, Sjogrens and APS.

I have a rheumy appt next week and will be speaking with her about it. I didn't know it could be a side effect of hydroxychloroquine.

[beaton]

Just been reading on another site (thyroid) can be to do with low Vitamin B12.

[ijeasike]

I ve that to before i was diagnosed with lupus i normally get it when i take quinine tablet. So i take hydroxychoroquine so my ear is always ringing. I barely take notice it . All we have to put up with lol. Take care dear

[miltonmadden]

Only when I have a 'flare up' with my Lupus but I am not sure if it is a symptom of Lupus. My sister has Tinnitus and she hears buzzing noises all the time. I think now she wears like an Hearing Aid. I would get that checked out hope everything will be alright take care.

[Mariedg]

I have had this even before I was diagnosed with lupus but it may be as my issues all started around the same time! Sometimes I don't even notice it and other times it drives me crazy. Learning to live with it though.

[VivPotter]

I had the tinnitus way before any other symptoms. Not sure if they are linked. My Rheumy told me that they don't understand much about lupus or fibro so there you have it. Drs don't know so just go away and put up with all the horrible symptoms and be quiet! Oh yes I forgot, its never quiet cos there is always this ringing in my ears!

[Linniebur]

I have tinnitus but I don't have Lupus. They tested me for that.

Good luck to you

[tiredmum]

I have tinnitus along with Lupus and APS. I also suffer with dizziness, in all the years that I've had it I have never been referred to ENT. I take 2 tablets for the dizziness which eases it considerably, but nothing helps the tinnitus apart from having back ground noise.

[Tubamags]

I have had tinnitus since I had a serious head injury when I was 11. I am 64 now! I thought everyone had it until just a few years ago. As I am profoundly deaf the ENT people don't make anything of it. Masking sounds wouldn't help because I wouldn't hear them. It is strange that tinnitus can be heard in an otherwise completely deaf person! It is awful at night, it seems to get so much louder, high pitched sounds like an aircraft taxiing to it's berth, but louder and higher pitched. Sometimes Morse code as well. I tried to read the Morse but it doesn't make any sense!!Lol! Rarely I get the pneumatic drill sound which is even worse, though I can reduce that by resting and relaxing my neck and head.

I haven't been diagnosed with Lupus yet, saving to see someone privately, but I wonder if it is to do with that. When I do get to see a specialist I will ask. My list of questions is now yards long and getting longer! It will be a book by the time I see someone!

Maggie x

[MEDIT3]

Hi Razoo

I have tinnitus also started after the birth of my third child. Three years later I was diagnosed with SLE. Having now had this plus other autoimmune problems I am completely convinced that it must be linked to Lupus. I wear maskers at night (look like hearing aids ) but are not, you turn on a switch and the aid produces a shushing noise (white noise ) which covers most of my tinnitus noise.There is a volume control on it also.Depending on how bad I am. I've been wearing them for about 20 years and they are my life saver!! my tinnitus was so bad in the beginning i simply could not cope so went to hospital after hospital until I found them through various audiologists etc.

It's now just a part of my life never being without noises in my ears.

[Razoo]

014, I really feel for you that the tinnitus is that bad, mine is not, but can still be annoying when it's quiet. I've never heard of those ear plug thingies, so glad they help you. It's amazing how we can adjust to things n it becomes the norm. Take care.🍀😃❤️

[Hidden]

Yes I have tinnitus too and hearing loss. Wear 2 hearing aids which help a bit.