Twitchy inner ear: Does anyone have experience with... - LUPUS UK

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Twitchy inner ear

Natura profile image
13 Replies

Does anyone have experience with vibration in the ear? Like I have water in my ear, but don't. It twitches from time to time. Thought it was because I had a cold, but cold is almost gone..also, really dizzy today with headache. Just took zinc and vit c headache better. Sleep disturbed...highly stressful week of my 14 year old daughter refusing to go to school. At hospital to diagnose severe anxiety, social workers coming to house...My stomachs a mess. Could this emotional distress cause a flare? Also, slight gall bladder discomfort. Yikes! Something happy happen quick !!!! Is it possible anxiety is part of lupus?

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Natura
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13 Replies

I am unsure what you mean by vibration in the ear but I had a loud buzzing sound and severe vertigo before my sudden hearing loss.

I am going to cite an article just in case it is required.

thelancet.com/journals/lanc...

If you do actually lose your hearing it needs to be treated as a medical emergency and can sometimes be reversed through high dose prednisolone.(steroids) But if you are affected the treatment needs to follow swiftly.

You may not have anything to do with this. But have a read anyway as forewarned is forearmed and I would hate anyone else to lose their hearing needlessly.

My loss followed a severe cold and stress seems to cause those with auto immune issues to experience more severe symptoms.

Sorry to hear of all your troubles.

I also had a feeling of fluid in the ear. I had time wasted whist my primary care team told me it was just an ear infection that would clear up. Hearing problems can be sensorineural or conductive.

Conductive hearing issues are issues normally caused by a blockage of some sort. If the blockage is dealt with hearing often returns. It can be an ear infection.

Sensorineural is when something causes damage to the hearing nerve or cochlear and this is the type of loss that can sometimes be reversed by prompt steroid intervention.

Some say that the very small capilliaries in the ear region can be affected by a blood clot causing this type of thing.

When I lost my hearing a tuning fork was held up against my bad ear which I had absolutely no sensation from. That is something that will indicate some sort of nerve involvement rather than a blockage.

Natura profile image
Natura in reply to overnighthearingloss

Interesting what u mentioned about tuning fork. When my brother was going to chiropractice school 30 yrs ago, he did the tuning fork thing on my ear and said I nerve damage. I never followed up on it back then because I didn't understand. Who should I be seeing you think? ENT or audiologist? Just wondering if u have any ideas. GP always says ear infection and gives u antibiotics without even knowing. I have a pounding headache and terrible dizziness with this. I guess I should have it checked out. Thanks for the info.

overnighthearingloss profile image
overnighthearingloss in reply to Natura

I hope that I have over reacted. But IF it is more than an infection, time wasted in treating wrongly could cause more damage. I am unsure how things are structured in the US.

When I finally found the relevant info (Yes, I had to find out myself) and spoke to some half decent doctors, I was then referred to an ENT department. You need to act promptly even though this is nightmarish whilst suffering from the vertigo.

Try to get someone to do a hearing fork test to narrow the possibilities.

Pounding headache could be related to the vertigo etc or maybe you are not anti coagulated enough? Those that say that clots can form in the small capillaries believe that if blood clots it can be the cause of the hearing loss in the same manner as it can cause migraines.

These things always seem to occur at the most inopportune times but it would be good if things don't resolve to see someone before the weekend is out.

Natura profile image
Natura in reply to overnighthearingloss

I am afraid I am not taking it seriously enough. It has been over a week. I also cut back on my natto k enzyme which treats sticky blood because my neurologist said I had a false positive in April of this year, and that i did not have lupus. Last night and today my shoulders tightened up with pain to the point I needed a heating pad. I am not sure this is all related. I have been putting my health on the side because we have an expensive bill from my last visit. I was sort of waiting, plus we are having a crisis with my teenage daughter refusing to go to high school. Things are stressed at home..I will look into an ENT when we have more $. Thanks for the info.

Petrof profile image
Petrof

I also get twitching in my left ear sometimes. If I think about it, it is probably when I get colds. It just resolves itself. I also get blocked ears, at least i think that is what it is, it gets better after a while after the cold clears. I was told that my inner ear is very small (the Eustache tube etc.) and that is why I have these problems.

Natura profile image
Natura in reply to Petrof

Petrof....I thought it was from a cold that is almost gone too. I still have a little sore throat...but the ear is still twitching....sometimes I can ignore it, but sometimes I can't. .annoying. I do need to get my hearing checked in that ear rgardless. I have been having trouble hearing out of that ear for awhile. I do also have very tiny ears.

candyellie profile image
candyellie

Hi Naura,

i suffer terribly with ear problems and particularly the right. I get the fullness you describe, dizzy and headache. I can gauge from this how busy by lupus is :-) mine progresses to a continual buzzing....I have that this am. Also, I have found it worsens with stress. I still havent got an explanation from rheum for it and will be tackling this issue on my next appointment.

I hope you get some relief and an sorry to hear you are going through such a hard time atm.

hazelHollingsworth profile image
hazelHollingsworth

I am so glad I read this page this morning. I had bad ear ache at the beginning of February (No hearing Loss) and I told the doctor it felt like when I started with sinusitis. She examined my ear and said it was "Slightly infected" and if it was no better in a week to go back - guess what - yep I was back it was twice as bad. She very reluctantly gave me antibiotics and told me to go back the week after. They seemed to be working but it was still not clear, I explained that when I have Any infection it usually takes a 'Blast' of two weeks of antibiotics to get rid of it. She did not listen and said to go back in 2 weeks if it had not cleared.

Two weeks later back at doctors and she was on holiday so saw another trainee Y2 Dr. She gave me steroid ear drops, I went completely deaf within a couple of days. I phoned the doctors and was told just to use the rest of the drops. Again back to the doctors and after looking said she would refer me to the hospital. One MONTH later at the hospital they said a 'fungus' had grown in my ear and they gave me some more drops - For THRUSH !!! in my ear ! Went back 2 weeks later and it had Grown, so they had to 'Hoover' it out (not pleasant) and gave me yet more drops and said if there was any problems to go back to my doctors. And on it went. Another Two weeks of antibiotics and three lots of ear drops and the nightmare goes on. Have to go back next week and am going to demand to be sent to the Hospital specialist as all I an hear is a 'swishing' as though there is water in it.

During all this time I have fallen 5 times as it is just sending me 'off balance' and look as though I have been run over by a bus. there are bruises all over me and they just do not disappear, so now as well as still having ear ache I am covered in what can only be described as 'Dirty patches' all over my arms and legs.

I am now going to use this page to give my doctor a shake and read through and print off the advice given by Overnighthearing loss. Thanks and sorry for ranting but is just making me so depressed as I dare no go out in case I fall over again.

Natura profile image
Natura in reply to hazelHollingsworth

Hazel....so sorry for your troubles...that is awful....I hope your doctor listens. I too am very dizzy and off balanced when my ears are bothering me....hope u feel better,,

Catlady56 profile image
Catlady56

Sorry to see you have been having a tough time of it lately. I'm sure anxiety is a part of lupus. What is happening to you could be partly stress related, but agree about others comments regarding hearing. As you have had a cold maybe there is some sinus involvement causing headache? Hope you can get your daughters problem with school sorted out with the school - something/one must be bugging her there. My eldest is 33, my youngest 30 - both still causing me much stress! I have grey hair anyway (what is left of it). :)

Hi there

I too am getting a feeling like im in a swimming pool in my ears. Its worse when i lie down, for some reason head touches pillow and much worse, in left ear. I just cant sleep on that side anymore!! Happens during the day too but less borhersome as its not dead silent like at night. I also started to get random buzzing on and off, sometimes stops me in my tracks when im at work i notice it alot. But it passes quickly. Some days i have milder buzzing in both ears all day. I also. Experience weird hard to describe " crackling or popping" noises... Sonetimes feels lije something is walking around in there!!!! Doctors unhelpful. Few monrhs back one gp said no wax, ears r fine. Month later saw another gp ( same practice just diff gps) ssid fluid i both ears and bit of tinnutus. Hecsaid come bkbif it doesnt resolve itself n he will refer me to ENT specialist. Last week went back n another gp said no fluid at all. (Lucknofcthe draw as to who u get an appointmentvwiv at my surgery) she ssid Sounds like tinnutus and no need to bother going to ENT coz theres nothing rhey can do about it! She sent me on my way saying i have to live with it. I saw Rheummy yesterday n mentioned it; he said nothing to do with lupus! So im none the wiser, just living with it!!!! I share your pain and frustrations xx hugs xx

Cann profile image
Cann

I get strange sensations in my ears from time to time especially at times of infection and after being in the garden because I think I pick up infections out there, too. I have had shooting pains through my ears and head since the thundery weather last week, but better today now the weather has cleared. I get intense itching which drives me mad as I dare not stick something in my ear to try to alleviate it. Other times I get vibrations, noises and a sudden feeling of a change from clear hearing to an echo-y type of hearing. I try to get on and ignore it hoping it will go eventually, but having had a burst ear drum twice, it can be scary.

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