Fluctuating Hearing Loss

[Jkph75]

I have a fluctuating hearing loss. It fluctuates across all of the frequencies. I am not talking about the normal test retest fluctuation. of 10db or less. Mine fluctuates 15-20db at times in random frequencies but never leaves the normal range in any frequency. I have seen several drs. They have all said that this is not typical for any ear disease. Some even said that they have never seen this.

Just wondering if anyone else has had this experience. I know it's not likely but I just thought I would throw it out there. Thanks

 

[MrBonk]

I feel like this has happened to me.
In the first two months, a few days after having taken Azithromycin(Which I had numerous other side effects from), randomly I had a loud fleeting T moment with quite a bit of pressure. First time, felt fine afterward. 2nd time, poof felt like some frequencies in my right ear disappeared somewhere in the 6-10khz range.
A few days later, same thing happened in my left ear. And then it felt like the hearing levels equalized and stuff sounded the same. But still less bright than it used to.

I had that happen a few more times until things seemed to get better. Though now after testing, my right ear has a few db more loss at 8khz than my left ear. They are both within 10dB but the difference is noticeable (I've got a trained ear from audio work.) and sometimes feels like it gets worse somehow for small periods of time.

6 months ago, things were totally fine, am almost completely certain I didn't have the same dips at 8khz . I have no idea what happened. I keep wanting to feel it was the Azithromycin that did the damage, but a few weeks prior I crashed an ATV and might have hit my head. I could see that being responsible for the T maybe. But delayed hearing loss?

 

[Jkph75]

@MrBonk

Thanks for responding. I don't really notice my hearing fluctuating. I only know that it is from my hearing tests. You should have an MRI. Something more serious than tinnitus could have happened during your accident. If not you could see a chiropractor. Perhaps you have whiplash from the accident.

 

[Coyotesheaven]

Yep this is the same story with me. Actually, I believe 5 db count as the error limits. I can definitely see mine going up and down, both in the high and the low frequencies.

 

[Jkph75]

Yep this is the same story with me. Actually, I believe 5 db count as the error limits. I can definitely see mine going up and down, both in the high and the low frequencies.

10db is the error limits. Until it's 15 you don't have fluctuation. If I remember correctly, yours was going outside of the normal limits (over 25db loss) in some frequencies. That is actually what they typically see in a fluctuating loss. The weird thing about mine is that it stays in the normal limits. Maybe it only is for now. I am getting worse. Now I have a loss at 4000hz which I don't understand. Did you get a new diagnosis? Or is it still migraines?

 

[Coyotesheaven]

@Jkph75

Don't ever believe what the doctors tell you about your hearing being normal when it is fluctuating; it's not. That's just what they say if you can communicate well enough and understand speech. Your impediment in a working world is minimal, you can remain a productive individual, so that is why they don't care. But they are lying to your face. I know this sounds harsh but it is the truth; I've seen this attitude too many times in doctors or ENT's I have come across.

10 db is too high for the error limits. Everyone I have been to says 5 is the standard error limit, and that makes more sense. Losing 10 db is halving the volume of a particular sound you hear, or by a large factor. It's not something to be neglected. Something needs to be changed if that is the accepted error limit. Well a lot of things need to be changed about how doctors evaluate hearing...the audiogram is a piece of medieval technology.



As for me, no luck. I am slightly less debilitated and able to do more things, with the caveat that I lose a bit of hearing here and there. The doctors are a bunch of dumb sheep and follow the textbook in my state; every doctor I have been to here has been an enormous waste of time and have presented me with loads of garbage; it's a disgrace. On my own for getting myself well or sitting idly waiting to go deaf. I cannot trust people's knowledge in this isolated state.

 

[Coyotesheaven]

@Jkph75

By the way, did you ever get a hydrops diagnosis by chance?

 

[Jkph75]

@Jkph75

Don't ever believe what the doctors tell you about your hearing being normal when it is fluctuating; it's not. That's just what they say if you can communicate well enough and understand speech. Your impediment in a working world is minimal, you can remain a productive individual, so that is why they don't care. But they are lying to your face. I know this sounds harsh but it is the truth; I've seen this attitude too many times in doctors or ENT's I have come across.

10 db is too high for the error limits. Everyone I have been to says 5 is the standard error limit, and that makes more sense. Losing 10 db is halving the volume of a particular sound you hear, or by a large factor. It's not something to be neglected. Something needs to be changed if that is the accepted error limit. Well a lot of things need to be changed about how doctors evaluate hearing...the audiogram is a piece of medieval technology.



As for me, no luck. I am slightly less debilitated and able to do more things, with the caveat that I lose a bit of hearing here and there. The doctors are a bunch of dumb sheep and follow the textbook in my state; every doctor I have been to here has been an enormous waste of time and have presented me with loads of garbage; it's a disgrace. On my own for getting myself well or sitting idly waiting to go deaf. I cannot trust people's knowledge in this isolated state.

My main point was that it stays within normal limits, which is what is odd about the fluctuations. Usually, you see fluctuating hearing going past 30db and then improving and it generally confines itself to either the high or low frequencies. They didn't say that the fluctuations were normal, but everyone I saw said that they have never seen it before. They see large fluctuations in low frequencies with Meniere's but they can't account for these small fluctuations across all the frequencies. The fact that I don't have a previous audiogram and am deaf in one ear further confound the situation.
You are right. They aren't concerned. I think the main thing is that they are not interested in keeping people well. Their interest lies in fixing something that is broken with surgeries, medications, etc. They think that giving you a hearing aid or a Cochlear implant is a fix. It's not. I would have thought that they would at least be interested in the diagnosis aspect but that doesn't interest them either.

I recently went out of town to another dr who diagnosed me with migraines and said it is possible that I could get Meniere's or AIED. My neurologist said that isn't my problem. There's something wrong with my ear. When they don't know what is wrong with you they just try to pass you onto someone else. So, I am in the same position as you. Either figure out what is wrong with me with my zero medical training or go deaf. I'm not getting to far at the moment.

 

[Coyotesheaven]

@Jkph

I can see your point about complexity. But for the fact that your ears do that is still alarming and definitely not right. Why it is all frequencies I don't understand. For me it is strictly the high's and the lows. The mids are pretty much fine. It may be a problem with your auditory nerve or something for all the frequencies to be affected.

I also completely agree with you in the 'interest' of the medical experts.
All of my neuro-otologists want to do hardly anything for me lest I pay them for an appointment over and over again, during which they do nothing. I was ditched by the neuro-otologist in Californa...who wrote papers on both of the diseases I am being investigated for but denied any knowledge of those conditions. That was because he could not see me again.
The last doctor I saw in town did about the same...3 minute consultation, no updated tests, looked at the old CT scan (from before I got sick), saw the fluctuations on the audiograms, saw that I was dizzy. Said nothing is wrong with my ears. To no surprise, many of his rave reviews come from patients receiving hearing aids or CI's. It is big money for him.
I also just waited 3 months for my neurologists. They had no clue what to think, at all, of my symptoms, and they claim to be thoroughly investigating everything. They just don't use their heads and follow the 'cookbook recipe'.
The strange thing is that there is a drug out there that could help me. But my doctor refuses to prescribe it to me because I don't have the most classic form of Menieres (uhh, low frequency hearing dying away both ears, dizziness, vertigo, headaches, ear fullness, roaring noises...I think I have hydrops of some type no duh).

They are not interested in diagnosing something, sending the patient off, and never getting the $$ again. They need to get something out of it for themselves, and not just your face, for them to want to help you. It's a sick, sadistic system. My solution in the future will be to boycott practices and to instruct others to do the same.

Because of this, like you, I have been forced to self diagnose and to find treatment on my own to save my ears and keep me from being disabled in yet more ways. I am so sorry you are facing the same despicable treatment.

I really hope you are able to find out what is going on some day. I think we should still work together to think through things because we share a lot of similarities in symptoms.

 

[Jkph75]

@Coyotesheaven

Yes. I have also been told that there is nothing wrong with my ear by some drs. It's such a joke. My biggest fluctuations have been 20db at 250hz and 8000hz and 15db at 1000hz and 2000hz. They tested my auditory nerve and said it was fine. I am happy to try to help figure this out together, though we may not have the same problem. PM me any time.

 

[Jkph75]

@Coyotesheaven

What is the drug that you wanted your Dr to prescribe?

 

[Coyotesheaven]

@Jkph75

It was betahistine. It is used for Meniere's disease, and vascular dysfunction of the inner ear. I may not have classical Meniere's but I am pretty confident something is up with the latter.

 

[Jkph75]

@Coyotesheaven

Tried to PM you but couldn't. Wondering what you have come up with so far. This is just getting ridiculous for me. No one is going to help me figure this out. They'll just be ready to sell me that hearing aid.

 

[Coyotesheaven]

@Jkph75

I really wouldn't know what is going on in your case.

I have a pretty good suspicion that my problems are vascular in nature and are related to my dysautonomia. There is just something too salient about the fact that my hearing acuity is often altered by sudden increases in blood pressure by doing strenuous things (moving heavy stuff, tensing up, laughing, crying, etc), or by my localized orthostatic intolerance. Not to mention that I feel alternating cold and warmth feelings deep in my ear or around my ear, which is blood flow going totally out of whack.

I believe that the 'controls' regulating blood pressure and around my inner ears are no longer working, meaning that I am vulnerable to blood vessel spasms or sudden constrictions in my inner ear.
Hence the progressive or fluctuating hearing.

I am still losing my low frequency hearing very quickly. Highs have fluctuated with an overall loss in the last 3 months, but nothing like my lows.

Is this your case? I often thought your problems were vascular in nature, so there could be some relevance. But what is going on with me must be pretty rare as I seldom come across journals describing it. I've had to infer from what dysautonomia does to blood pressure and flow regulation in general to come to these conclusions, along with a previous diagnosis of migranous vasospasm around my inner ears.

I'm so sorry for what you are going through. It's frustrating how ignorant and insight-lacking many ear doctors can be. What vascular-related tests have you had so far?

 

[Jkph75]

@Coyotesheaven

I had a MRA. That is it for vascular tests. Most docs say that I can't have a vascular problem because my blood pressure is fine and I am thin. I would think that it could be more complicated than that but I really don't know.

My hearing will "drop" when I turn my head, eat, or read out loud sometimes but not all the time. I write it in quotes because I know that it isn't dropping by 20db. It's a smaller drop more like 5 or 10. I get pressure in both of my ears, sometimes from head movement sometimes not. I have had a feeling like something is dripping behind the cartilage of my ear above my ear canal. Hot feelings in the same place too.

Although, I can say that I don't think that I have dysautonomia. We're you diagnosed with this or think that you have it?

 

[Coyotesheaven]

I have some level of autonomic dysfunction, as is evidenced by orthostatic problems, occasional cold hands and feet, and previous symptoms corresponding with POTS. I should also mention that orthostatic hypotension need not be entirely systemic in its effects; my blood pressure is fine as measured by the cuff on my arm, but I still have orthostatic intolerance that only affects the circulation above my neck. The fact that my ears have sudden intense pressure and LF hearing loss, followed by a pulsing sensation a few seconds after I suddenly stand and dizziness'lightheadedness, supports this.

Also, MRA's can only look at the major blood vessels and arteries; they are unable to see the arterioles around the inner ear. Just FYI. So if there is a partial blockage, a constriction, or a narrowing, I don't think it would be visible, and could still very likely be going on.

The other symptoms you describe are nearly identical to mine (hot ear feelings, fullness, roaring, and identical triggers). Now, concerning problems when you eat; have you noticed that it is set off by extended chewing and jaw movement? Do you have strange sensations in your ears (like something pops put) when you swallow? I have both of these problems and that is why eating is often dangerous territory for me.

Now the dripping sensation could be just that, a sensation, or it could be a change in blood flow; I get the same warm feelings around my ears, which incidentally cause the fullness and roaring to subside and I start feeling better.
But it could be indicative of congestion and/or a CSF leak. Have you ever observed a random watery discharge (that either has no taste or tastes salty) come out of your nose or ears? That would definitely warrant a search for a small CSF leak. Evidence of a leak (in the dura) generally comes in an MRI, because there are a lot of visible signs, but sometimes the leaks could be small enough not to cause that effect. And CSF leaks can affect the low frequency range of your hearing; the phenomenon is called intracranial hypotension. But to have it I would expect dizziness/vertigo and headaches as well. Do you?


Aside from that I don;t know what to tell you, as obscure LF losses like that can be hard to discern, especially if the problem does not resemble Menieres. One more question of curiosity-How is your neck posture and how are your neck muscles behaving? I am beginnin
g to believe that some if not all of my problems are coming from an abnormally straight neck and incredibly tight neck muscles, which may be compressing nerves or blood vessels.

 

[Coyotesheaven]

Also, did you ever get a CAT scan of the temporal bone?

 

[Jkph75]

@Coyotesheaven

I also get loud whooshing sounds for a few seconds after getting up or bending over. It seems to be getting worse. I do think that the problems during eating have more to do with chewing than what I am eating. When I swallow I can hear lots of clicking very loudly but I am not sure that I feel anything popping out. I had thought a CSF leak was a possibility but they didn't seem to think so. I was dizzy when I was off of the Prednisone. Now sometimes at night when I first lay down I will feel like I am gently swaying like on a boat but it goes away quickly and goes away when I roll over. I don't know if I have had that at all since my Prednisone was increased. The headached I get seem to be more hormone related or sometimes I get them from scrolling through my phone. My neck is a mess and so is my shoulder on my T side. I guess I have very loose ligaments which have become even looser from pregnancy. My muscles are tight but not strong. Apparently, this is creating cervical instability. I did get a CAT scan of my temporal bone and it was normal.

Any new developments with you?

 

[Coyotesheaven]

@Jkph75

Well, that seems like orthostatic intolerance to me (lines 1-2). That will definitely mess with your ears in the long run. You might have some sort of dysautonomia too.
But I think the real problem lies in your cervical instability. That might cause problems with brainstem function and blood flow, both of which can affect your hearing. If the neck is not stable, that is. I think you should bring this up with your ear doctor. You should do some research to understand how cervical problems can impact both the brainstem and your cranial nerves, as well as possibly your hearing. I think you are coming up with answers now.

On my end it appears to be a similar problem with my neck. It's not stable either and the muscles are so tight that they are pinching blood vessels. I am also under investugation that I may have acquired POTS from sitting for such long periods over many months, according to what my GP told me...they saw the OH on my blood pressure test. That could mean that my blood pressure and heart rate are screwed up when I change position and make rapid movements. My friend said that her POTS did end up messing with her ears, but not permanently. My doc told me to start exercising every day and that it may eventually go away.

 

[Jkph75]

@Coyotesheaven

I did bring up my neck problems with my Neurotologists. They said that my neck cannot affect my ear. I think that my neck problems may exacerbate my ear problems but don't directly cause them. Something about pregnancy has damaged my ears. After I stopped breastfeeding my first child, I would occasionally hear a small sound for a few minutes or whooshing. My GP said that it was eustachian tube dysfunction. Then after I had my daughter there were more times of hearing small but more noticeable sounds before I woke up with this tinnitus. One time I felt pressure in my ear for a few seconds. I'm not sure how a tiny barely noticeable problem became so large overnight.

I didn't exercise during my last pregnancy. It has been a year and I still have not been exercising. Every time I start to exercise again, my ear gets worse. I tried even starting out small with only 10 or 20 minutes on the treadmill and that still made it worse. I can't figure out why. I have 2 small children, so it's not like I ever get to sit down. However, I am not getting regular cardiovascular workouts.

Have you started to exercise? Has that helped?

 

[Jkph75]

@Coyotesheaven

Don't know if you're still around here, but I was wondering if you had any balance testing. That might help them decifer where your dizziness is coming from. If you had it, I would be interested in hearing your results.

 

[Coyotesheaven]

@Jkph75

I haven't been on here owning to things getting worse without explanation. I come to sometimes help other people, but it's a very serious situation on my end right now, and sometimes I just do not like ruminating on my fate...if you ever need help or questions though, do let me know.

I did have balance testing in fall of 2015, which didn't mean much considering that I was a great deal healthier back then. Everything came back fine except for one test; I was not experiencing dizziness or vertigo that day so of course they were fine. I have considered submitting for balance testing again as my vertigo has started to creep in again this month. But what does it even matter; I am one step ahead of almost every one of my doctors, and always my ear doctors, so far.

I personally believe my vertigo is both peripheral and central; I have been told repeatedly that my CNS is not working right, and well autism can present as central balance problems. but I am pretty sure my inner ears are not in a good way either.

 

[Jkph75]

@Jkph75

I haven't been on here owning to things getting worse without explanation. I come to sometimes help other people, but it's a very serious situation on my end right now, and sometimes I just do not like ruminating on my fate...if you ever need help or questions though, do let me know.

I did have balance testing in fall of 2015, which didn't mean much considering that I was a great deal healthier back then. Everything came back fine except for one test; I was not experiencing dizziness or vertigo that day so of course they were fine. I have considered submitting for balance testing again as my vertigo has started to creep in again this month. But what does it even matter; I am one step ahead of almost every one of my doctors, and always my ear doctors, so far.

I personally believe my vertigo is both peripheral and central; I have been told repeatedly that my CNS is not working right, and well autism can present as central balance problems. but I am pretty sure my inner ears are not in a good way either.

I am so sorry to hear that. In what way are you worse? Maybe we should go through everything we have tried so far and what helped some, what didn't? Might be of some value considering the similarities.

If you had balance problems related to Autism then you would have had them all along. If your dr's are telling you that you suddenly developed balance problems related to your Autism, then they are more inept than you even think.

There must be something that can help in some way. Don't give up!

 

[Coyotesheaven]

So far, I cannot recall anything that has consistently helped me regarding my inner ears. all of the therapies I have used are caput for the most part. There are a few preventative measures like staying hydrated, getting exercise, avoiding specific food groups, but there are triggers like sleeping on my back that I cannot avoid.
Really, if anything the only preventative thing to try to do is to not get upset or stressed, but that is relatively impossible right now. My best friends and my mother left me and few people contact me anymore, except when I feel like kicking the bucket (essentially poking me with a stick to see if I am dead yet), I sit in the house for most of the week doing nothing internally satiating because the neuro problems have lead to disability, my doctors continue to ignore me or attempt dangerous therapy, I feel suicidal every day, and my hearing deficit is cutting me off in every sense of the word because of it's interaction with my autism. I dissociate, I struggle to feel emotions, I experience bouts of anhedonia, I cannot visually understand my world. Oh yea, and dreams dead can't do art atm. So, it's often impossible to stay calm.
The thing about my balance problems was that I never saw them as a problem, and certainly not after the age of 8 until last year. I felt to have had exceptional balance as a small child. Everyone kept saying something was wrong with me, but I never felt ill or different. I walked on the balance beams perfectly, I could have been a gymnast, I never got dizzy on spinny rides and love the stimulation. I think a lot of the 'problems' about my autism related differences were fabricated because they did not fit a neurotypical narrative and bothered the lifestyle of associated neurotypical people, and my parents wanted me to look normal for everyone else. I was diagnosed with central balance problems regardless and received therapy, though I never remember benefiting from it except for the fact that I was doing what people wanted me to do. Basically, therapy was aimed at making me follow certain status quos.
I have continued to mention autism and it's relation to possible CNS malfunction to all of my recent doctors, and yes they are very ignorant and had no idea what to think of it.

 

[Coyotesheaven]

Also, I forgot to mention. Have you ever been testing for chemical sensitivities?

I am currently investigating one; something in my polymer clay maybe making my nervous system sick and reactive. I did start using it regularly around the time I truly came down with chronic health problems a year ago. I have also noticed an exacerbation of my symptoms this month and I have been using a lot of polymer clay.