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Do you or anyone you know suffer from tinnitus?

Do you or anyone you know suffer from tinnitus?  What is your experience, discuss with others here!

AARPTeri
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I do. And hearing aids are out of sight.

Yes I do. It’s very bad in my right ear but both ring constantly. 

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   I have tennitus BIG time. I hear a variety of sounds, ranging from chirping birds, ringing, the sound of rain or running water, a pulsating noise like a heartbeat and others. They vary. Sometimes I hear 2 at a time. Tests performed by an otologist revealed slight hearing loss at high and low decibels, and a VNG balance test was negative for inner-ear problems. The upshot was that the problem is caused by migraine (which I've had for years, but headaches were replaced by ocular migraine that causes vertigo and double vision, with tinnitus a component of the disorder. Hence the referral to the otologist).

       I was referred to a neurologist. I told him about my tinnitus symptoms, which also include the sound of people talking, as though a radio had been left on, and music that sounds like a men's chorus. He said that THAT particular symptom is rare, but officially recognized by the American Academy of Neurology (or another professional neurological organiztion) as a form of epilepsy, called "auditory hallucinations" - NOT to be confused with a psychiatric disorder of the same name. In this context, it refers only to migraine-related symptoms, including tinnitus!

     Possibility for diagnosis of epilepsy as a component of  tinnitus is strengthened by the presence of epileptic-like symptoms reported in conjunction with migraine - e.g., the need to sleep following an attack, the presence of a prodrome, etc.

    I was given a seizure medication that's used widely off-label for migraine. I couldn't tolerate it so it was replaced with a medication prescribed ONLY for seizures, to see if it would help the migraines and thus, treat the tinnitus. I can't tolerate that either, so now I'm on Enzyme Co-Q 10 300 mg a day. A trial period is usually 3 months, so we'll see. In the meantime, I have to put up with the sound of locust swarms and "choral concerts."

   The purpose of my post is to urge anyone with the rarer symptoms of tinnitus (the talking and the music) to discuss them with a neurologist. Unfortunately, there's not much literature on the subject of epilepsy being concomitant with tinnnitus, or whether migraine factors into it. A sleep-deprivation EEG and an enhanced MRI can help find brain abnormalities that could lead to a diagnosis. However, I don't think "musical epilepsy" is detectable on imaging studies since it's a component of tinnitus.

   

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I've got those same symptoms and thought I was crazy until I read your post. Thank you. I've been too embarrassed to mention it.

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I have audio hallcinations. Music, talking, mine is usually Big Band music. I also have slamming noises and people speaking or yelling directly next to me, as well as caling my name as I fall asleep. Its during the sleep phase that is used for hypnosis.  I have had all of this for decades. I have a rare neurological disorder called Ideopathic Hypersomnia, a sleep disorder that loves to throw everything but the kitchen sink into the game. I also have chronic migraine disease, seems to run in my family.  I only developed Tinnitus a couple of years ago as a side effect of Bupropion, aka Wellbutrin SR. This, like the seizure medications, and the Narcolepsy meds, is often used for off label treatment of various conditions, including neuro pain. Stopping the Buprophion did not stop the Tinnitus, unfortunately. I am at the point where I need to have my hearing checked, but I wonder if it is actually my hearing that is going, or just that the noise in my brain, not my ears, is simply too loud to let me hear past it.

I would like to say though, that I'm not only offended, but deeply Annoyed that a few posters have minimalized this and told people to just suck it up. (not referring to the post I'm replying to). Lucky for you, the noise isn't as loud as it is for many of us, at least not yet. Don't judge others by what is happening to you. You do not know their pain. A little kindness and empathy goes a long way, especially when the Medical field tells you that they really do not know what to do.   

 

Periodic Contributor

Oh, yes.  I've had severe tinnitus since 1995.  I had brain cancer and the radiation therapy afterwards damaged my aural nerves.  I use blocking noise, like a radio.

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My good friend suffers from the same as you. She hears Christmas music non stop. It is terrible!! Been to a neurologist and they haven't helped her. I just read an article in the AATSP magazine about a new therapy called: Night Time Sound therapy. Trying to get more info, but can't seem to find it here!!
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Yes - that's what the Doctor says it is.  H hear ringing in my ears all of the time and have for several years.  It is bad all of the time, so much so that I do not hear as well as I have in the past (or cannot decipher sounds as well)  I always, ALWAYS, hear the ringing.

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My Grandmother had tinnitus, but it was mostly nosie in her ears or head.  I've been getting music, only music, like a band playing the same tune over and over.  It's isn't bad, but it is annoying.  I never connected it with epilepsy. I don't know much about epilepsy, but I thought that was related more to mobility issues, not hearing. 

 

I have hearing aids that work well for understanding speech. I don't wear them regularly, but I still "hear" that repetitious music playing in the background.  My Grandmother wasn't able to wear hearing aids because they magnified the noises she heard from the tinnitis. 

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I was recently diagnosed with tinnitus and hearing loss.  There doesn't seem to be enough support groups for tinnitus.  

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Periodic Contributor

I see you posted your comment about support groups back in 2016.  Maybe there were fewer posters to this site then, but now, in February of 2021, I would say this AARP forum is a support group!  I have seen much support and some interesting ideas about tinnitus here.

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Also no one can afford hearing aids.  The cost is prohibitive.

Periodic Contributor

You are right about the prohibitive cost of hearing aids.  Hearing is a vital sense, one that keeps us safe and ensures quality of life.  Medicare should cover the entire cost of hearing aids, as should Medicaid for those who qualify for it prior to age 65.  Make noise:  call your State and Federal representatives!

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I've been told I have hearing loss after several tests and last year I purchased a pair of hearing aids for both ears.  I also have tinnitis but feel it has gotten worse since I've started wearing them.  Don't know if that's the cause though.   

What I hear is something like the wind and sometimes it sounds louder than other times. Getting back to those hearing aids, which I'm still trying to get used to. They do cost a pretty penny but I feel I could've gotten the same thing for a much less price than what I paid.  They usually range in price from 1500 dollars each.  

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Some Sam's Club stores have Hearing Centers.  They have many different styles of hearing aids and personal sound amplifiers at a fraction of the cost of going to a hearing center.  They do the testing there too.

 

My tinnitus has become so bad, that I am finally going to get a hearing aid or a personal sound amplifier.  My doctor said I would know when it was time, when I couldn't understand what people are saying to me (when in a crowd) that it affects my daily life and work.  My family is telling me it's time.  It's not that I didn't want one, but I didn't have $4,000-$5,000 for a pair.

 

I am definitely go to Sam's Club to see about their service, now that they are much more affordable than before!

 

Also, an interesting article....https://www.aarp.org/politics-society/advocacy/info-2017/hearing-aid-no-prescriptions-legislation-fd...

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FYI....In addition to comment below:

 

Veterans are provided free hearing aids....contact your local VA office.

 

Financial assistance may be available to you through many different programs listed here:  

 

http://www.betterhearing.org/sites/default/files/hearingpedia-resources/Financial_Assistance_for_Hea...

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I have noise problem only in my left ear when " I lie down to  go to sleep " when I have the airconditioner or ceiling fan ON.  During the day I have No Problem when I am working or moving around and the wind does not bother my left ear.

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Yes!!! Drives me nuts and has gotten worse. Went to ent doc and basically said to ignore and play music that silence is not my friend. Welcome any ideas please

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I have had tinnitus for 1 1/2 years. When it started, I didn't sleep for almost 3 weeks because of the high pitch sound, and wound up in the hospital. ENT could not do anything. Went to audiologist who fitted me with maskers (hearing aids that you can choose sounds, music, nature noises etc. with your phone or Ipad. So with that and behavioral counseling and antidepressants have been able to tolerate it. I am now having more quiet days. Have to stay busy. No magic cure. There are trials going on so hopefully they can find a cure. 

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