dont know what to do anymore!

lovezebras

lovezebras

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K so i havent been in to check on posts and what not in awhile..but some ppl here know i have tinnitus...well recently its gotten worse, and it was already pretty bad before. I also have a different type of ringing in my left ear..and that isnt even my "bad" ear..my right is the worst with the ringing louder..I also have been getting really bad headaches, plus my hearing went down again... Ive been stressed too which i know doesnt help..but ive been trying everything..my noise machine at night, trying to read before bed, using my FM system at school..but its just not enough, i start university next year and i just found out that i dont get an FM system cuz they dont have the phonak edulink which is the open concept fm (ive also been having the problem that i can hear my teacher fine but when other people talk around me i cant really hear them)..., and they wont order just one, so id have to buy it..which i DEFINITELY cant afford, even thru the assistive listening devices program etc, cuz id still have to pay a large portion, and i dont have hearing aids..so now im wondering what to do..i know i need to make another ent appt ..but they never listen to me..they say since me hearing "isnt bad enough" ( my last test was about 35-40 dB loss on the right and about 25-30 on the left) that they dont think i need a hearing aid..but ive read that children or people who are still learning benefit because then there is a better chance they wont miss things said in class. Now i do get notes taken for me in each of my classes when i start university..but i dont think thats enough?...please someone give me advice on what to do..im wanting to break down and cry almost everynight cuz i feel like my own doctors are against me at times..so advice please and thanks!!!:)
Alicia
 
Alicia,

<hugs> I know exactly what you are going through in regards to tinnitus. I have bilateral tinnitus and sometimes it can be so loud that I hear it even when my CI processors are on.

Some people report that using hearing aids helps relieve their tinnitus. You might want to ask your audi about that. The theory behind wearing hearing aids for tinnitus is that the sound input you receive from the HAs helps block out or eliminate the tinnitus.

It must be *so* frustrating having your ENT tell you that your hearing loss "isn't bad enough." The next time you see your ENT, I would tell him/her that hearing isn't soley based on one's audiogram. No two people with the same audiogram hear exactly the same. Just because you have a 25-30 dB loss in your left ear and a 35-40 dB loss in your right ear doesn't mean you aren't struggling to hear -- especially in noise. (This is why I feel for people who have normal to mild or mild hearing loss. Everyone seems to think they hear just fine and don't need hearing aids. :()

Speaking of which, have you mentioned to your audi the difficulty you have understanding others in background noise? That might be enough to convince him/her that you could benefit from hearing aids.

Have you ever been given a HINT test? (This is a test in which you listen to sentences in the presence of white or background noise.) If not, I would ask your audi about that since the HINT can reveal the difficulties you have hearing in noise.

Colleges and universities are required by law (under the ADA) to provide accommodations for all disabled students. This includes the use of FM systems. If the university you plan to attend has a DHH program, you might want to contact them and ask how they handle FM systems (are they loaned to each student for a nominal fee every semester or are students allowed to use them for free all semester?).

If you think your hearing has changed, I would definitely get another hearing test. The changes you've noticed in your hearing might be enough to warrant hearing aids.

Hope this information helps you feel a little better! :)
 
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Hi

Alicia,

Hear Again has given you some great advice. I would like to add that if you are still under 18 I would try to find out what financial help your state provides for those 18 and under who need hearing aids. It is good you are trying to do something about it now before you go to college.

I also have tinnitus , both ears have a different type of "Noise". Sometimes I even get Broadway show tunes in my right ear. If you are used to caffeinated drinks you might want to cut back becuase caffeine can make tinnitus worse.

If you have a MP3 player I hope you are not listening to it for more than an hour per day and do not have the volume too high. I was doing some research for a hearing protection class I gave at work and I read that MP3 players can reach volumes of over 100 db. I tested this out with a sound level meter and when the volume of my IPOD was maxed out the sound level coming out of the ear buds got as high as 110 db. :eek3: If you go to concerts or dances remember to wear hearing protection so you can preserve the hearing you have.
 
I feel your pain! I find my tinnitus is the worst during stressful times or when I dont get enough sleep.

I have no advice but just the support of someone who knows exactly what you are going through.
 
As set2 already mentioned, eliminating caffinated drinks in your diet can be helpful in reducing your tinnitus. It's also important to cut down on salt intake as well.
 
Hear Again said:
Some people report that using hearing aids helps relieve their tinnitus. You might want to ask your audi about that. The theory behind wearing hearing aids for tinnitus is that the sound input you receive from the HAs helps block out or eliminate the tinnitus.
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Im hoping that maybe i can convince my ent to maybe do a trial thing with the ha's..you can do that can't you? i mean i dont understand how it could hurt to try?

I haven't heard of the hint test either but im definitely gonna ask!

Hear Again said:
Colleges and universities are required by law (under the ADA) to provide accommodations for all disabled students. This includes the use of FM systems. If the university you plan to attend has a DHH program, you might want to contact them and ask how they handle FM systems (are they loaned to each student for a nominal fee every semester or are students allowed to use them for free all semester?).
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At the university im attending they do have a centre for the disabled called the paul menton centre..and they do have fm systems..but since i dont have ha's its not as easy..All their systems are a bit older, so they work but they won't purchase any new ones for one student to use because then they would have to replace all their fm systems. The fm system i currently use is the phonak edulink which has up until recently worked quite well...its hard to hear other ppl while i use it, but the teacher is understandable most of the time...but the fm systems for use without a hearing aid are all older models as well and only come with the earbud choice, not like the open fitting ones i have currently, and since i have the hearing problems that doesnt help cause then that is just blocking out any other noises i might need to hear...hopefully that made sense. I can't afford to buy myself an fm system..hearing aids are less expensive..so i dunno i think id be able to benefit more from getting ha's or at least one for my right ear than having to only rely on the note takers ill have for each class...

Hear Again said:
As set2 already mentioned, eliminating caffinated drinks in your diet can be helpful in reducing your tinnitus. It's also important to cut down on salt intake as well.
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I dont drink coffee and i dont drink soda very often and i dont really put salt and stuff..and my moms on a diet so there isnt much salt in the cooking either!..lol so im good on that part mostly

I also called today and someone had just canceled their appt so i got on for wednesday, which is really good..cuz usually they are really busy! So what type of questions should i ask..im not use to the hearing aid q's and such...?
 
I'm glad you were able to get an appointment! While there, I would *first* mention to your audi the difficulty you're having hearing others in noise. I would then ask to be given the HINT test. Hopefully by seeing the results of that test, your audi will be convinced that you need a hearing aid (at the very least, in your right ear -- if not both).

If you are given a hearing aid (or hearing aids) to try, you have a 30 day money back policy. You can try them for 30 days and if you're not happy with them for any reason, you can return them and try another pair.

As for FM systems, you might try using headphones. I have a 10 year old Comtek FM system (as well as a newer 216 MHz Comtek FM system) and they both take headphones, neckloops and direct audio input (DAI). When I started using an FM system in 1995, I couldn't use ear buds. The sound wasn't loud enough not to mention the fact that they wouldn't stay in my ears!

Good luck at your appointment -- and let us know how it goes! :)
 
questions

Thanks all you guys for the advice so far!...As to the hearing aids though, what kind of questions are asked by the ent? and what questions should i ask im not totally sure?...
 
Comments.

I don't know what to add but I have been suffering with loud tinnitus for just over 2 years. Yes, it kept me up at night, woke me up and drove me nuts until I came to understand that it was not going to kill me. I did have to learn to deal with it though. My hearing wasn't so bad to start with in 2004 but over time, I have pretty much become very hard of hearing and underwent CI surgery Dec. 15th so that kind of tells you how bad my hearing has gotten.

As far as your hearing test. Your audiologist will probably base their decission to recommend a hearing aid on your hearing test results. Telling them that you have tinnitus may help them understand more of your challenges with hearing speech. My situation was that if I was concentrating on hearing the tones during the hearing test, I could hear them even with the tinnitus. My major problem is that the tinnitus was masking enough of the speech frequencies or causing distraction in my brain that I could not understand squat when someone was talking to me especially in noisy environments and if I was unable to read lips.

What I would recommend is keep an open mind, explain when and where you have trouble hearing, what sounds you have difficulty hearing, letters in words that you consistantly miss hearing that seams to make speech harder to understand. What I always told the audiologist is that I had a much harder time understanding lower male voices than higher female voices. Try to understand this first yourself so you can better articulate what you are experiencing. You may ask the audiologist to help you understand the tinnitus you hear by overlaying testing tones to the tinnitus you hear. I found that the tinnitus that I was hearing concentrated between 1000 and 2000hz so about 1500hz and was at a volume equivalent of about 60db meaning the test frequency of 1000hz at 60db was just a little lower than the tinnitus I heard and 2000hz was a little to high in pitch. I also have a ring which is just above 8000hz and slightly below 60db but that does not cause me problems in hearing speech.

I hope this is not to much information and confusses you more.

Don't confuse Frequency with Decibles/volume. Volume is how loud a sound is, frequency is normally tested from 250 to 8,000 250 is a very low/base and 8,000 is a very high frequency like an extremely high screech sound.

Most people know that hearing uses a lot of hair fibers that send signals to the brain. The best way I can describe the idea of tinnitus to someone not familiar with it is to kind of explain to them that it's like a single hair on their arm being pulled because they can feel that and concentrate on it. Now imagine this slight sting they feel instead of sending a signal that a hair is being pulled but that it is a single sound of frequency being stimulated all the time like a ring that never ends and you can't get away from it or stop it. It is internally stimmulated and external sound does not make it louder or softer, it is just there all the time, sometimes it covers up what your are trying to hear or makes it very hard to differentiate sylables in words.

Anyway, hope this helps and best of luck with your appointment on Wednesday,

Steve
 
Here are some questions you might want to ask your audiologist:

What can I expect from my hearing aids?

Are there any medical or surgical considerations or corrections for my hearing loss?

Which design is best for my hearing loss?

What is the total cost of the hearing aid?

Is there a trial period to test the hearing aids? What fees are nonrefundable if they are returned after the trial period?

How long is the warranty? Can it be extended?

Does the warranty cover future maintenance and repairs?

Can the audiologist make adjustments and provide servicing and minor repairs? Will loaner aids be provided when repairs are needed?

What instruction does the audiologist provide?

Can assistive devices such as a telecoil or FM system be used with the hearing aids?

Are there any medical or surgical considerations or corrections for my hearing loss?

If your audiologist recommends hearing aids, write a daily journal of the sounds you hear. What sounds do you like? What sounds don't you like? Are sounds too loud or painful? What situations are you still having difficulty hearing in, if any? Does your voice sound comfortable to you?

Hope this helps. :)
 
thanks for all the advice and questions, i think this will really help! Does anyone else get really bad headaches with their tinnitus or with hearing loss..i was thinking im getting headaches maybe cuz im straining to hear or cuz of the ringing?..Also i get pains in my ear as wel but their intermitent usually they hurt for like an hour or 2 at the most then there fine for a bit n hurt again later on etc....anyone else get that? lol?:ugh3: .And another thing how does the whole trial thing work for the ha's? Do they take a mold and all that for the trial period or no?..sorry for all the questios i just want to make sure i know everything first..
 
lilitalia89 said:
thanks for all the advice and questions, i think this will really help! Does anyone else get really bad headaches with their tinnitus or with hearing loss..i was thinking im getting headaches maybe cuz im straining to hear or cuz of the ringing?..Also i get pains in my ear as wel but their intermitent usually they hurt for like an hour or 2 at the most then there fine for a bit n hurt again later on etc....anyone else get that? lol?:ugh3: .And another thing how does the whole trial thing work for the ha's? Do they take a mold and all that for the trial period or no?..sorry for all the questios i just want to make sure i know everything first..
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My best friend used to have this problem. I just emailed her if she still has the problem and if not, how did she get it solved. I told her to look at your thread adn see if she can register and answer your questions.
 
I have a long history of migraines. However, when I started wearing hearing aids, alot of my headaches were attributed to sounds I was not used to hearing.

My audi suggested that I wear my HAs for an hour per day and gradually work my way up from there (i.e. 1 hour/day, 2 hours/day, etc.). That worked perfectly and helped cut down on the headaches I experienced.

I do get migraine headaches from my tinnitus from time to time -- especially when the tinnitus is very loud and repetitive. :( I take Imitrex for my migraines, so that helps eliminate the pain and makes my tinnitus a little easier to deal with. :)

I have bilateral CIs and sometimes I experience the same kind of ear pain that you describe. Even now and then I have twinges of pain in my right ear that come and go. I don't know what the pain is caused by since loud sounds are not painful to me and my ear doesn't hurt physically -- it's more of a throbbing, pulsing pain that radiates inside my ear. I'll have to ask my CI surgeon about that.

If your audi recommends hearing aids, he/she will take impressions for earmolds. This will be done before your hearing aids are ordered. This way, the impressions can be sent to the lab and be ready by the time your hearing aids arrive.

One thing to note about earmolds. They come in different varieties and materials from soft to hard acrylic.

When I wore HAs, I always had hard acrylic skeleton earmolds and found them to be the most comfortable. When I tried soft earmolds, I couldn't get them to stay in my ears (even when I applied Oto Ease ointment). To be fair, I have very small ears, so that may be one of the reasons why I did not have any success with them.

One nice thing about skeleton earmolds is the fact that they do not block the ear canal. Throughout the time I wore HAs, I was prone to constant ear infections and the skeleton earmolds helped cut down on them considerably. Since skeleton earmolds do not block the ear canal, this makes it easier for the ear to "breathe" thereby reducing the potential for ear infections to occur.

If you have any skin sensitivity or skin allergies, you might want to ask for hypoallergenic earmolds. When I received my first pair of HAs, I couldn't wear a "standard" hard acrylic earmold because of ear pain and redness. Once my audi switched me to hypoallergenic earmolds, I had no further problems with pain. In fact, my earmolds were so comfortable, 99% of the time I couldn't even tell I had them on. :)

If you use hard acrylic earmolds and your voice sounds like it is a barrel (called the "barrel effect"), ask your audi to place vents in them. Vents are small holes drilled into the earmold which allow lower frequencies to enter the ear and give some sounds (such as a person's voice) a more natural sound quality. Some people have only one vent in their aids while others (like myself) have/had two.

A hearing aid trial period lasts for 30 days. If you are dissatisfied with your hearing aids for any reason, you can exchange them for another pair without cost.
 
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Questions the ENT might ask-

The ENT will probably ask questions like:

1. How long have you had your hearing loss?

2. What other symptoms do you have? (drainage or discharge from ears, Earaches and Tinnitus)

3. Is there anyone else in the family with hearing loss?

4. What medications are you taking, if any? (Include things like vitamins in this list)

I would write down the information before you go and you can give the ENT the information.

Finally, If you do go with hearing aids and go with a style other than BTE (Behind the Ear) you might want to have some molds made for BTE hearing aids because if you have to send in you hearing aids you can use some BTE loaners. The molds cost about $50 to $60 each (in CA) and take about 3 weeks to get.
 
I feel for you. When I had my sudden hearing loss last year my tinnitus was horrendous and very loud. For one week I used sleeping medication but then weaned myself off as I didn't want to get addicted to them.

The tinnitus has improved a lot since I had my CI switched on but I do find that if I am tired it sounds louder than normal so making sure that you get enough sleep every night is something else you can concentrate on.

Also there are some audiologists like mine who specialise in tinnitus and it might be worth trying to find such a specialist? My audiologist does a kind of retraining therapy that focusses on getting stress levels down and ultimately reducing tinnitus. I haven't done it since my tinnitus is at a level where it doesn't bother me but I've heard it's had good results with people who are either normally hearing or who have small losses.
 
R2D2 said:
I feel for you. When I had my sudden hearing loss last year my tinnitus was horrendous and very loud. For one week I used sleeping medication but then weaned myself off as I didn't want to get addicted to them.

The tinnitus has improved a lot since I had my CI switched on but I do find that if I am tired it sounds louder than normal so making sure that you get enough sleep every night is something else you can concentrate on.

Also there are some audiologists like mine who specialise in tinnitus and it might be worth trying to find such a specialist? My audiologist does a kind of retraining therapy that focusses on getting stress levels down and ultimately reducing tinnitus. I haven't done it since my tinnitus is at a level where it doesn't bother me but I've heard it's had good results with people who are either normally hearing or who have small losses.
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R2,

Is there a specific name for this kind of training? I'd be interested in trying it -- especially on days where my tinnitus is very loud. I have bilateral tinnitus and do my best to ignore it, but sometimes that's impossible to do.
 
lilitalia89 said:
Im hoping that maybe i can convince my ent to maybe do a trial thing with the ha's..you can do that can't you? i mean i dont understand how it could hurt to try?
Click to expand...



I would stress to your ENT that you would like to go forth with a trial use with amplification. While I agree the hearing loss in your left ear would put you as a borderline candidate for amplification, the loss in your right ear would most certainly make you a candidate for a hearing aid.

I often get asked "Do I need hearing aids?" by patients of mine. My response to them is, "Do you think you need hearing aids?" I would never tell anyone they NEED a hearing aid, I have patients who are profoundly deaf and tell me they don't want one (the do just fine speech reading). On the other hand I have patients with very mild hearing losses that state they cannot function. Ultimately, you are a better judge of how much your hearing loss impacts your life. I only know what your hearing is like in a sound proof booth under ideal circumstances.

If you were my patient I would not have a problem with you going forth with a trial use of hearing aids. However I would also counsel you at length about what to expect.
 
thanks:)

K so thank u guys so much for all u have told me and all the advice uve given..im glad i have support other than my friends who say "oo that sucks"..... So my appt is today at 3 and im excited/nervous...im gonna ask about the headaches and tell them my tinnitus is worse and my hearing went down a bit and is bad in background noise etc. also im gonna ask about the hearing aids and all the questions u guys told me about...i wrote them down:ty: just in case i forgot any lol. Thanks again! ill post 2nite what happened!
Alicia
 
ok!

k so i went and he checked my ears and stuff and i didnt even ask about the hearing aids cuz he mentioned it first...so now he is trying to get me a hearing test either 2morrow or friday to see if my hearing went down ..and then we will go from there...i told my mom and she was like "there not a fashion statement..." blah blah..i think she thinks i want them for the sake of having them..which makes me mad, cuz its like she thinks im faking which kinda hurts my feelings...but other than that the appt was good and he said we will talk more about my ears after my hearing test...
 
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