[ECHOES]

I know I"ve posted about this before. I'm sorry to be whining again. I've even had this all my life.

But sometimes it is so aggravating to have no peace from it! It's so ironic to be hard of hearing and yet have this loud buzzing and ringing all the time, with the hearing aid in or with it out!!

I am truly thankful that this isn't something painful, but it is so intrusive and it never ever lets up.

I just want peacefulness.

Does anything at all help?

[girlN]

I'm sorry you are so uncomfortable. I am not familiar w/ tinnitis but I just thought you could use an online hug. ((()))) I am sending positive energy to you and hope you find some rest.

[sunrise]

ECHOES, I have tinnitus too. It is so aggravating. I just have it on one side. It is a constant roar in my right ear. Sometimes it is so hard to hear over the constant racket. It is worse at night when I lie down (sounds like a pounding, like people building a house next door in the middle of the night). The best thing that works for me is to have other noise happening because then it distracts me from the noise in my ear. I've heard there are special headphones you can get that you can program and they help cancel out the noise. Helps with sleep, but of course not during the day.

Many hugs for you.

[wickedwings]

((((echoes)))) i am almost completely deaf and have tinnitus. i've had tinnitus off and on before, on a rare basis, which didn't last too long. right now, i get tinnitus when i have my vertigo attacks (it's a brain thing, not an ear thing, apparently). anyway, i know what you mean. as for myself, i just learned to embrace it. i can't explain it any better than that. as for my vertigo attacks, i've had this since september and i'm on neurontin for that. just got on it yesterday, so we'll see if that helps me.

[(JD)]

I used to wear maskers and that helped greatly. Now, I am almost deaf in one ear just from the tinnitus! Neither masker works for me now, and insurance hasn't bothered to replace them. I'd rather go around missing stuff than bother with them again (ins co)... I used to use white noise tapes to help sleep... and the tinnitus is worse if I eat certain foods, or if I have to chew hard foods (that's the tmjs causing tinnitus then)

((((hugs)))

One day last week my "vertigo" was so bad I felt as if I was driving the car sideways at times.

[Perna]

I can attend or not to mine, though it's my "entire" right ear. I guess having one okay ear and not "remembering" I'm deaf in one ear helps. It's just a "constant" for me and part of the background. But I know what you mean, I have a heck of a time with nose or breathing squeaks, squeals, whines, other noises when I'm trying to go to sleep at night. I can't stand that.

[ECHOES]

It's everpresent, even though I wear a hearing aid for hearing loss (should wear two but they are SO expensive!!). When I take the hearing aid out at night I don't hear anything but the high pitched hum or sometimes like crickets or frogs making a racket on a spring evening. It doesn't seem like it comes from my ears but from my head, way inside.

It seems like when it's the constant one-note high pitch is when it makes me the craziest.

Sometimes I can't tell if the phone is ringing or it's my head/ears. Or I'll miss the kitchen timer or microwave because I can't distinguish the different sounds.

Oh grrr.

Thanks so much for all who commisserated with me. to you and what you have to endure too.

btw on another site I read that there are many things being tried, from low-salt diets, ginko-balboa (sp?), cochlear implants, and meds like Neurontin. I have some Neurontin and I'm going to try it for a few days.

[(JD)]

ECHOES, why not get a masker to wear at night for sleep. It can be finetuned for those particular tones and made into white noise so you don't hear them only a soft rushing of wind or water or such... much easier to get used to. IDK but I think the maskers might be less expensive. Have you tried the white noise cds or tapes? They are great too! Just make sure you put it loud enough to cover your tinnitus! It's worth it!

[ECHOES]

Thank you Sky!

It would have to be awfully loud. I'll think about it but I think it might be equally irritating.

A masker would be too expensive. I need a 2nd hearing aid very badly. I'm nearly ready to toss out the one I have and leave the hearing world behind.

[(JD)]

What about ear buds for the cd player? I've done that, then once half asleep, yanked them out

[Abby]

Hey echoes - i am training to be an audiologist, only one semster left (wohoo!!) so i know a fair bit about tinnitus, hearing loss and hearing aids etc.

First off i want to sympathise with you, i have seen quite a few people (during my yr work placements in hospitals) who have tinnitus and i know how much it can affect a persons life. Although research is still rather limited on tinnitus (i am doing my dissertation on tinnitus) so there is no 'cure' as such, enough is known to give you some help at least.

First off i wanna explain what tinnitus is (i apologise if you already know this). Tinnitus is basically misfirings off the haircell nerves in your ears. It is not yet know why this is the case but it usually corresponds pitch wise to the place where a person has the most hearing loss. So if you have a high pitch hearing loss (like most ppl) then you are most likely to hear a high pitch sound as this is where you are getting the least 'sound' information. So in places where there is little noise e.g. in bed, you will feel like the tinnitus is getting louder. This isn't the case, it is merely because there is less distraction from normal day to day sounds, so all you have to 'listen' to is the tinnitus, which makes you focus on it. Usually audiologists will tell you that your H/As will help with the tinnitus (during the day) as basically what they do is give you back some sound at the frequencies you have a hearing loss which distracts you from the tinnitus. (again makes sense it is worse at night as you take them out etc).

Now, don't get me wrong tinnitus can happen to anyone not just ppl with hearing loss but it is more apparent in ppl with a hearing loss because there is less sound being heard/less distraction.
Just to clarify too - tinnitus can be at any pitch or at multiple pitches, it can be continuous or on and off. It takes many forms.

Most hearing therapist will start by talking about the cycle of tinnitus - tinnitus is commonly related to stress. So briefly, tinnitus most commonly starts at a time of high stress (although not always), the tinnitus starts, you worry about it, you listen to it more to be sure its there, and as you're listening to it it appears to get louder, this makes you more stressed as you can't concentrate, this stress makes the tinnitus louder and so on so forth. Therefore first off you shouldn't worry about tinnitus if you have been checked by an audiologist - i would advise being seen if you haven't.

Hearing therapists usually take their patients through a general CBT format talking about the links between stress and the way of thinking and tinnitus. They recommened relaxation. Breathing exercises when you feel that the tinnitus is becoming overwhelming. This will take time but what you really need to do is break the cycle that i mentioned above. Some people find it is easier to do this with relaxation tapes etc. You want to reduce stress levels and worry, to reduce the loudness of the tinnitus. The more it annoys you unfortunately the louder and more annoying it will become...which will then increase annoyance. Plus if you don't get much sleep because of it, you are already have lower levels of coping skills to deal with the tinnitus. So it is a vicious cycle.

Other things i would recommend you doing is avoiding places where there is little noise. This may sound odd if someone thinks that they have a hearing loss so why does it matter? But it is very unlikely you have total hearing loss you are more likely (this is only in generality!!) to have a sloping hearing loss which means you can hear some sounds but the problem is that with conversation you can't decifer what someone is saying. It is usually a problem with clarity of speech not loudness. So try to keep something playing or happening in everyroom if you can.
At night you can do what many others have suggested. But the cheapest and best techniques are the relaxation techniques and also try putting a radio in between stations that'll create a white noise that will give you something else to listen to. There are pillow noise generators that you can put under your pillow that do the same thing and are free on the NHS in england anyway. But to be honest a radio does the same thing.

There are maskers that you can be given like sky said but these do take around 6months for the effects to be seen. What you want to do though is make sure you can still hear your tinnitus not 'mask' it out. Sounds odd again i know, but by putting it just below the level of your tinnitus you will learn to assimilate the tinnitus into the noise so you don't hear it anymore, then over time you turn the masker further down so that you can just about hear the tinnitus again etc. I really shouldn't use the word masker, my lecturers would fail me if they knew, as it is now called a noise generator as it was found that patients got confused and felt they had to mask the noise and not hear it which isn't the point of a masker/noise generator. I dunno how much these cost as i've done mostly nhs work but they're a basic analogue type so it will be much less that hearing aids, if its not you're being scammed!

Also you are right about diet and tinnitus, although it is not proven by good studies as yet i do recommened cutting out salt, caffeine and alcohol if possible as all these seem to aggravate tinnitus. Just so you know my project is investigating the effects of caffeine on tinnitus!

Anyway i should stop. But one last thing, it bugs me how much H/As can cost and i would really really recommend shopping around first. There are so many different types of hearing aids and a good private audiologist should offer you the best H/A at the best price, and give you a choice of at least 2 or 3. I dunno if you know the difference between analogue and digital but in england in the nhs they're just coming in (unsure about US) so you should ask which one yours is. Analogue H/As are cheaper but they're worse technology. I really should stop now. Honestly i think i've just written my entire course! haha. Feel free to pm if you want anymore info.

[(JD)]

USA has some nifty ones fully programmable digital... and I'm wanting them!

I have Menieres Can you remind me (so I don't have to look it up) what makes it flare in particular? Lately the tinnitus is unmanageable, the vertigo increasing... isn't there something with diet? I feel dumb.

[ECHOES]

Abby,, wow, thank you so much. Congrats on having only one more semester to go.

I do relaxation already at least every night and that helps.

I do not believe any kind of CBT is useful, sorry. I have a therapist of another orientation.

My hearing loss is in the conversation range and my tinnitus is very high pitched mostly and is constant. I know i notice it more when things are quiet. I just want to have quiet like other people do.

Thank you for the reminder about caffeine. I don't drink much any more but I think I have had more lately that could be making it worse. Salt is not a problem in my diet and I don't drink any alcohol but I do like my coffee and even decaf actually has caffeine in it.
Yes HA are so ridiculously expensive and that makes to sense to me especially with so many tech gadgets out there these days that are not expensive. They are just toys and we need aids for everyday life, to work, communicate, be safe in our environment! I need two but have only one because it's all I can afford. But it's a good one and is a programmable digital. The clarity is amazing compared to my previous aids (I've worn them all my adult life).

Unfortunately I can't be in noisy places. I need to be in quiet places. I don't want background noise, white noise, or radio static. I just want peace and quiet for once. Constant noise whether it's the tinnitus or a radio or television makes me anxious. Music can help but I really prefer quiet.

Thank you very much for taking your time and sharing your vast knowledge! You're going to be a great audiologist!

[wickedwings]

abby, that's cool. i'm almost totally deaf and wear a digital hearing aid, which helps with some sounds, but not with speech. i'm a lip-reader, anyway. a couple of times when i had vertigo attacks, my tinnitus was incredibly loud. it amazed me because i've never heard of it being so loud.

i've been to an ent and was tested on my balance. the test revealed so much activity that couldn't be produced by my inner ears. he told me that it had to be my brain sending abnormal signals to my inner ears, so no wonder meclizine did not work, and sent me to my pcp. my pcp put me on neurontin. i was told that it would take a month for it to work. so, i'm still having to deal with very debilitating vertigo and eye-wagging (back and forth movement) that interferes with my abilitey to lip-read.

[Abby]

Hey sky sorry it's taken so long to reply. Yeh the programmable aids are pretty decent, they are programmed to your individual hearing loss unlike the analogue ones that are a bit hit and miss. But when you get them (which i really hope you are able to!!) remember they will sound different, people often say they sound quieter but they're not really it's just the analogue ones make everything loud whilst the digital ones are more clever and only increase the volume of some freqs etc so are better at providing clarity which is usually what ppl need over loudness.

Yeh you are right - there is a connection between diet and Meniere's . Basically the first medical management for Meniere's disease is a low salt diet as sodium seems to be a trigger. Also try avoiding caffeine, nicotine and chocolate if possible. Drs also prescribe diuretics for meniere's disease so maybe you could try this if you have not yet?
I've been doing a study of intratympanic gentamicin injections for meniere's disease. It is compared to surgery so usually only used in extreme case but it is not really invasive like surgery. It hasn't been fully studied yet but it is widely used as a treatment so maybe it is something of interest for you to look into prehaps?

I'm really sorry you are struggling so much. I wish i could say something to make it all a lot better. But there is some good news, usually Meniere's disease will burn out eventually after a few years. Unfortunately though any hearing loss will remain and balance will be compromised, but the brain is very clever at stabilizing this.
If you can i'd recommend that you get the new hearing aids as balance involves your ears (hearing and vestibular), vision, and joints so the more you compensate on one the better balanced you will feel.

I hope this is of some use.

[Abby]

eek wickedwings - that sounds so difficult for you. Not only do you not have great balance it is affecting your ability to 'hear'. Wow i have to take my hat off to you for coping with it all!!
So your balance problems is more a neurological problem? I hope the medication starts to work soon! Yeh the eye-waggng thing is called a nystagmus and is very common during vertigo episodes. I can imagine it makes reading people lips very difficult!
I wish i could suggest something else apart from the meds. Just as a thought do you have programmes on you H/A? do you have a H/A in one or both ears? Because obviously as you know hearing aids can only aid hearing they can't fix it (like glasses) but there are some things you can do to help. If you have a programme switch that eliminates some of the background noise that may help. Basically it switches off the back microphone so obviously you should have the people you are talking to in front of you and all the noise (if possible) behind you so that it is reduced. Also if you need two H/As i would recommend it because a) it will help your balance as it will have equal signals to each ear and b) it will help you differentiate speech from background noise. As i'm sure you know hearing aids aren't perfect but wearing it as much as possible will allow your brain to 'learn' sounds again - there is no point putting a H/A in only when you 'need to hear' because you won't hear as well as you could. Woah sorry for the ramble! But one last thing if i may, have you ever thought about getting a loop system? Again it is activated by a switch on your H/A and there is a lphysical loop that you can link around the tv or the people's necks that you want to listen too. Like a miniture versions of the ones in cinemas and theatres. This programme can link you directly to the person speaking (if they are wearing the loop) so you will hear nothing but them. Maybe an idea, i know in UK you can call social services to come and put them in your home for free!
Please keep safe. I don't want the balance problems to have any more affect on your life than it has but obviously a fall is a danger. I'm sure you have adapted your life very well around your condition but please keep safe, vertigo can be so debilitating. I think it amazing how you are coping so far and really hope the meds help!

[Rick61701]

ECHOES,

Have you thought of using hypnosis to help with this issue? I have had the opportunity to work with a few clients for Tinnitus, and have had very good results.

If you would like to research this more, one of the first websites you will find will be Kevin Hogan's site. He is a Psychologist/ Certified Hypnotherapist who is known in the hypnosis community as the go to guy when you have questions regarding this issue. I will post a link to his site below. I also noticed on his site that he sells a CD program for Tinnitus. I don't know anyone who has used this, but based on his reputation I would bet it is good.

http://www.kevinhogan.com/tinred.htm

Thanks,
Rick

[ECHOES]

Rick!! Hi I remember you and I'm so glad you're still around.

I would be interetsted in this and my former psychologist is does hypnosis. I left her because I wanted a different approach to therapy but I wonder .. since she her goal for when she retired was to be able to help children with pain if she might not have something for me.

I think I'll start with the CD and see how it goes. I do some relaxation/autogenics/guided imagery CDs now.

I thank you so much for the link!

How are you doing?

[Rick61701]

ECHOES,

I am doing very good thanks.

Please let me know how the CD set works out for you. I've heard so many good things about Kevin.

Thanks,
Rick

[ECHOES]

Oh, yikes. I went to the site. Too much $$ for me right now.

It looks very comprehensive, a lot of material.

Thanks again and glad to hear you're doing well.

[(JD)]

Thanks abby!