who has a fluctating loss?

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janelle3

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why is it so hard to diagnose?
why do doctors not belive us when we say we have one
just because our audiograms look different....
please help im going to give up
i feel like i cant take it
i need a good audi and anyone else had issues with a flux loss?
 
I have a fluctuating loss, but I also have a permanent hearing loss. My hearing fluctuates due to a neurovascular disorder. Sometimes, blood vessels in my brain constricts and cut off blood flow to different parts of my brain, including the auditory nerve. My hearing decreases when this happens.

My suggestion to you is to get a referral for an ENT. If the ENT does not take you seriously, you need to see a good neurologist. It took 3 neuros and 2 rheumatologists to finally diagnose me. The last neuro and rheumy actually ran tests. The others were too busy telling me I was a whack job. Now, I can take medication when my hearing starts to drop to open the blood vessels and prevent further damage.
 
I have fluctuating hearing loss and I have Meniere's.

If you can, find a neurotolgist (note the OTO).
 
I have Fluctuating Loss - on my mild/mod side (my other side is consistently +120db profound)

I think that if you have an audie that you get along with - even if they don't think you have FHL (fluctuating hearing loss) initially, as you build up a relationship over the months and years they will likely "come around" to accepting that you do have FHL. One of the most difficult aspects about FHL is that there are MANY variables regarding what causes the fluctuations ... for some people it's things like stress, , exertion, exhaustion, illness, allergies (including food), hormones (for women their menstrual cycle) etc ... and the length of the fluctuation may be mins, hours, or days ... so it's unlikely that you'll be able (or want to, for that matter) drop everything and rush down to get a new audiogram the second you notice your hearing is decreased etc!

Personally - I've never had difficulty with my audies accepting that I have FHL - I think mostly because I always state it as a FACT not as a question or statement looking to them for validation. That I have FHL is just one aspect of my HL profile ... I'm profoundly deaf on my right, I have mild/mod FHL on my left, I have tinnitus & hyperacusis, I have slight balance problems etc... I never let it be a questionable thing.

When I elaborate on my FHL I mention that it tends to be triggered by similar things that trigger my migraines (stress, mental exhaustion, extreme weather fluctuations etc) and that the fluctuations typically last between a few hours and a few days, depending on what has "triggered" it)

It's worth mentioning that while some cases of FHL are neurological in nature some are also physiological (caused by inflammation,fluid build up, or vascular type issues in some part of the ear) , so it's important to rule out things such as recurrent ear infections or inflammation (typically an allergic reaction).

One thing that a Dr and Audie both mentioned trying when you notice a FHL change is taking an antihistamine (Reactine, Claritin, Allegra etc) OR and antihistamine with an decongestant - provided it is safe for you to do so (check with a pharmacist if you are taking other meds or have any medical conditions or allergies etc).
In some cases taking an antihistamine will help - especially if the FHL is actaully caused by localized swelling & taking an antihistamine with decongestant will often help if there is swelling with fluid buildup :)

Hope that helps :)
 
Anij said:
I have Fluctuating Loss - on my mild/mod side (my other side is consistently +120db profound)

I think that if you have an audie that you get along with - even if they don't think you have FHL (fluctuating hearing loss) initially, as you build up a relationship over the months and years they will likely "come around" to accepting that you do have FHL. One of the most difficult aspects about FHL is that there are MANY variables regarding what causes the fluctuations ... for some people it's things like stress, , exertion, exhaustion, illness, allergies (including food), hormones (for women their menstrual cycle) etc ... and the length of the fluctuation may be mins, hours, or days ... so it's unlikely that you'll be able (or want to, for that matter) drop everything and rush down to get a new audiogram the second you notice your hearing is decreased etc!

Personally - I've never had difficulty with my audies accepting that I have FHL - I think mostly because I always state it as a FACT not as a question or statement looking to them for validation. That I have FHL is just one aspect of my HL profile ... I'm profoundly deaf on my right, I have mild/mod FHL on my left, I have tinnitus & hyperacusis, I have slight balance problems etc... I never let it be a questionable thing.

When I elaborate on my FHL I mention that it tends to be triggered by similar things that trigger my migraines (stress, mental exhaustion, extreme weather fluctuations etc) and that the fluctuations typically last between a few hours and a few days, depending on what has "triggered" it)

It's worth mentioning that while some cases of FHL are neurological in nature some are also physiological (caused by inflammation,fluid build up, or vascular type issues in some part of the ear) , so it's important to rule out things such as recurrent ear infections or inflammation (typically an allergic reaction).

One thing that a Dr and Audie both mentioned trying when you notice a FHL change is taking an antihistamine (Reactine, Claritin, Allegra etc) OR and antihistamine with an decongestant - provided it is safe for you to do so (check with a pharmacist if you are taking other meds or have any medical conditions or allergies etc).
In some cases taking an antihistamine will help - especially if the FHL is actaully caused by localized swelling & taking an antihistamine with decongestant will often help if there is swelling with fluid buildup :)

Hope that helps :)
Click to expand...

thanks but im saying why when it fluctuates all my test look different and they say ohhh its inconsistent and this and that....how was ur ABR?
well if u have sensitivity to sound how do u wear hearing aids that would make it worse right? what do they treat you with with a fluxx loss? and yes thanks you were very informative i just need a new doc maybe or something that will trust my judgement i dont wnat to walk in there and say oh i have this and that and that because i think they would be like thats their job but um.....so yeah i totally see what u mean its like wow my hearing is okay then bammm its down and up so how do they treat you with this? what are ur audi appts like most of the time? most people question it because its so inconsistent and stuff and thats what im scared of. do they treat u with aids? ald? things like that.....cause i know u have sensitivty to sounds. what do u suggesst i do? ....at my next appt ..
 
In my case, my test results tend to fall within a 20db window ...my usual results fall between 15 &40 db loss across the various frequencies and when it fluctuates it goes down to about 30 & 60db, because of this we consider anything that falls within this range "my normal".

It's actaully quite common for people with HL to have "good hearing days" and "bad hearing days" - which would be seen if they took daily audiograms... people with FHL simply have a greater range from their "good hearing days" and "bad hearing days" than is average. Qualified audiologists will have seen many cases of FHL - or at least are aware that it is a "real thing", so provided you're being honest about the situation there really isn't anything to "worry about". Your hearing is what it is ... and while it can make fitting HAs a bit of a challenge, you shouldn't be having to defend yourself against your audie that FHL exists.

My HA (Phonak MAXX BTE) is set with a volume adjustment that gives me the ability to +/- 10db from the preset start up level (for a total of 20db). While this isn't perfect, it is enough to make sure I have access to speech even when my FHL is fairly intense.

regarding sensitivity - in some cases I find that wearing the HA accurately helps because the limiter in the HA makes all sounds fall within a certain volume - and prevents things from being too loud. I don't use my HA all the time, only when I want to - which is basically in situations where it helps (I don't bother wearing it at home, or in noisy environments).

I haven't had and ABR since I was VERY little ... and honestly I don't remember what the results where at all. I do know that my FHL is due to a number of factors, including Fibromyalgia and likely a form of APD (which is almost impossible to accurately test for in adults unless it's severe CAPD).

As a person with hearing loss YOU are the only one who knows how YOU hear ... your audie can determine some aspects of what you are able to hear/understand on a given day ... however they aren't INSIDE your head. They use YOUR feedback to help build a picture of the various frequencies you are able to hear, and what you're able to unscramble/figure out regarding words that are said etc. They CAN'T know things such as how much you are guessing, how hard you are "working" to hear/determine the sound or word - unless you TELL THEM. If they don't "believe you" it's time to find a different audie. In my case I'm a VERY good "guesser" when it comes to words & phrases ... I'm often able to guess words that I haven't understood by guessing a word that would likely be on a test (so something common, that a child would know, that likely sounds like a number of other words etc). I'm also VERY sensitive to vibration, so I'm often able to "hear" something tacitly long before I can hear it aurally ... so much so I actually have to be very specific and tell my audie during tests "I feel it, but I can't hear it".

I hope that helps a bit.

Remember it's important to become educated about your hearing loss, so you can help educate others - and that includes audies (You know more about how you hear than anyone else. Period)
 
Anij said:
In my case, my test results tend to fall within a 20db window ...my usual results fall between 15 &40 db loss across the various frequencies and when it fluctuates it goes down to about 30 & 60db, because of this we consider anything that falls within this range "my normal".

It's actaully quite common for people with HL to have "good hearing days" and "bad hearing days" - which would be seen if they took daily audiograms... people with FHL simply have a greater range from their "good hearing days" and "bad hearing days" than is average. Qualified audiologists will have seen many cases of FHL - or at least are aware that it is a "real thing", so provided you're being honest about the situation there really isn't anything to "worry about". Your hearing is what it is ... and while it can make fitting HAs a bit of a challenge, you shouldn't be having to defend yourself against your audie that FHL exists.

My HA (Phonak MAXX BTE) is set with a volume adjustment that gives me the ability to +/- 10db from the preset start up level (for a total of 20db). While this isn't perfect, it is enough to make sure I have access to speech even when my FHL is fairly intense.

regarding sensitivity - in some cases I find that wearing the HA accurately helps because the limiter in the HA makes all sounds fall within a certain volume - and prevents things from being too loud. I don't use my HA all the time, only when I want to - which is basically in situations where it helps (I don't bother wearing it at home, or in noisy environments).

I haven't had and ABR since I was VERY little ... and honestly I don't remember what the results where at all. I do know that my FHL is due to a number of factors, including Fibromyalgia and likely a form of APD (which is almost impossible to accurately test for in adults unless it's severe CAPD).

As a person with hearing loss YOU are the only one who knows how YOU hear ... your audie can determine some aspects of what you are able to hear/understand on a given day ... however they aren't INSIDE your head. They use YOUR feedback to help build a picture of the various frequencies you are able to hear, and what you're able to unscramble/figure out regarding words that are said etc. They CAN'T know things such as how much you are guessing, how hard you are "working" to hear/determine the sound or word - unless you TELL THEM. If they don't "believe you" it's time to find a different audie. In my case I'm a VERY good "guesser" when it comes to words & phrases ... I'm often able to guess words that I haven't understood by guessing a word that would likely be on a test (so something common, that a child would know, that likely sounds like a number of other words etc). I'm also VERY sensitive to vibration, so I'm often able to "hear" something tacitly long before I can hear it aurally ... so much so I actually have to be very specific and tell my audie during tests "I feel it, but I can't hear it".

I hope that helps a bit.

Remember it's important to become educated about your hearing loss, so you can help educate others - and that includes audies (You know more about how you hear than anyone else. Period)
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good good you are so smart do you an email address or something?
i mean im looking for a goood audio but im new audio but im new at this so i dont know about their characater. and ps.....i dont want to lose my job because of it bc im borderline losing it bc of my hearing i work at a bank
 
janelle3 said:
good good you are so smart do you an email address or something?
i mean im looking for a goood audio but im new audio but im new at this so i dont know about their characater. and ps.....i dont want to lose my job because of it bc im borderline losing it bc of my hearing i work at a bank
Click to expand...

They can't fire you due to hearing loss. We should get AliciaM in here since she also works at a bank and she is HOH.

I have fluctuating hearing too but my loss is so profound that it doesn't really matter. It is a difference of a 90dB loss or a 120dB loss.
 
good day(s), bad day(s)

I am HOH and I wear HA's in both ears. I am FINALLY getting "comfortable" with myself as simply HOH: neither (fully) Hearing, nor (fully) Deaf. In a few situations, I CAN function as "oral," but I tire of asking people to repeat themselves. My ability to use my residual hearing is growing better and better. Speech is often still "fuzzy," but I have found that I CAN understand quite a bit from the vowel sounds and the "rhythm" of people's speech. I hear almost nothing (discernable) in noise, however. I have accepted that I will probably always struggle in "noisy environments." I can carry on a decent conversation with one (sometimes two) other people in a small, quiet environment. I, too, have good hearing day(s) and bad hearing day(s). Sometimes my tinnitus "bugs" me and sometimes it doesn't. I have just ACCEPTED what is, and I am getting on with my life.:aw:
 
they can't fire you once you've been there for that long...pretty sure your probation is same as ours..or id think so and thats 3 months ..they have to be able to accomodate you and help you communicate with customers..but then again there are a lot of other standards of the bank and if they're that bothersome for you and you can't cope maybe try another position? For me I'm a teller/customer rep but I don't use the phone even though Im spose to..my coworkers make any calls that I need to make for me other than that if I have trouble understanding a customer I ask a coworker for clarification or ask someone else to serve the customer
 
AliciaM said:
they can't fire you once you've been there for that long...pretty sure your probation is same as ours..or id think so and thats 3 months ..they have to be able to accomodate you and help you communicate with customers..but then again there are a lot of other standards of the bank and if they're that bothersome for you and you can't cope maybe try another position? For me I'm a teller/customer rep but I don't use the phone even though Im spose to..my coworkers make any calls that I need to make for me other than that if I have trouble understanding a customer I ask a coworker for clarification or ask someone else to serve the customer
Click to expand...

Even during your probation period you can't be fired for your hearing loss either.
 
Wirelessly posted

JennyB said:
AliciaM said:
they can't fire you once you've been there for that long...pretty sure your probation is same as ours..or id think so and thats 3 months ..they have to be able to accomodate you and help you communicate with customers..but then again there are a lot of other standards of the bank and if they're that bothersome for you and you can't cope maybe try another position? For me I'm a teller/customer rep but I don't use the phone even though Im spose to..my coworkers make any calls that I need to make for me other than that if I have trouble understanding a customer I ask a coworker for clarification or ask someone else to serve the customer
Click to expand...

Even during your probation period you can't be fired for your hearing loss either.
Click to expand...

No you can't be fired for that but you can be "let go" for not serving customers fast enough, not getting referrals etc
 
thanks AliciaM
I work there and people always complain
Im waiting for a letter from my audi but its taking a toll on me
they say that my loss from my ABR isnt really a loss but then I have others say I have a fluxx loss so I'm not sure what to do. All the ENT was a waste and I refuse to go back they treated me like crap. I don't understand how someone working at a bank would survive with a hearing loss my heart goes out to you. I'm waiting to see if they think "I'm lying because my hearing loss goes up and down up and down". Then I waste my money at ENT's for what!
The Vocational Rehab is making me get an ENT just to seek her services and I don't think that is fair. is it? All I know is I am not lying and I need help I have a 3 yr old daughter to take care of and this is bull. How many audis does it take to get the a holes away!!!
 
AliciaM said:
Wirelessly posted



No you can't be fired for that but you can be "let go" for not serving customers fast enough, not getting referrals etc
Click to expand...

Thanks because I have a kid to take care of and she even knows I can't hear lol
 
defgrl said:
I am HOH and I wear HA's in both ears. I am FINALLY getting "comfortable" with myself as simply HOH: neither (fully) Hearing, nor (fully) Deaf. In a few situations, I CAN function as "oral," but I tire of asking people to repeat themselves. My ability to use my residual hearing is growing better and better. Speech is often still "fuzzy," but I have found that I CAN understand quite a bit from the vowel sounds and the "rhythm" of people's speech. I hear almost nothing (discernable) in noise, however. I have accepted that I will probably always struggle in "noisy environments." I can carry on a decent conversation with one (sometimes two) other people in a small, quiet environment. I, too, have good hearing day(s) and bad hearing day(s). Sometimes my tinnitus "bugs" me and sometimes it doesn't. I have just ACCEPTED what is, and I am getting on with my life.:aw:
Click to expand...
Thanks for your input people here I've heard will help you adjust
 
defgrl said:
I am HOH and I wear HA's in both ears. I am FINALLY getting "comfortable" with myself as simply HOH: neither (fully) Hearing, nor (fully) Deaf. In a few situations, I CAN function as "oral," but I tire of asking people to repeat themselves. My ability to use my residual hearing is growing better and better. Speech is often still "fuzzy," but I have found that I CAN understand quite a bit from the vowel sounds and the "rhythm" of people's speech. I hear almost nothing (discernable) in noise, however. I have accepted that I will probably always struggle in "noisy environments." I can carry on a decent conversation with one (sometimes two) other people in a small, quiet environment. I, too, have good hearing day(s) and bad hearing day(s). Sometimes my tinnitus "bugs" me and sometimes it doesn't. I have just ACCEPTED what is, and I am getting on with my life.:aw:
Click to expand...

Thanks for your input people here I've heard will help you adjust
 
JennyB said:
They can't fire you due to hearing loss. We should get AliciaM in here since she also works at a bank and she is HOH.

I have fluctuating hearing too but my loss is so profound that it doesn't really matter. It is a difference of a 90dB loss or a 120dB loss.
Click to expand...

Thanks, I've never understood dB or anything like that. But did they question you with your fluctuation because they always assume I'm faking because my hearing is that way or at least they hint around. Especially after my other ENT appt.
 
janelle3 said:
Thanks, I've never understood dB or anything like that. But did they question you with your fluctuation because they always assume I'm faking because my hearing is that way or at least they hint around. Especially after my other ENT appt.
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Nope. I have 3 separate causes for my hearing loss and more genetic oddities than most. They don't question why my body does anything it does ;-)

I don't really see ENT's that much. Haven't in a few years at least. I just see my audiologist who is fabulous and thinks my hearing loss is facsinating.
 
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