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Moink

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Posts: 16
Reply with quote  #1 
Hi everyone.  I'm new to the boards as of this morning, though I've been lurking and reading info like mad for the past week or so.  Please bear with me as I share my story.

Before I begin, I want to note 2 things:  (1) I had quite a few ear infections as a child, which moderated in my teens and basically stopped recurring when I hit adulthood.  The last infection I remember resulted in a broken right eardrum, which healed on its own in a few weeks.  My ears will still usually clog up when I get an upper respiratory infection, but they typically resolve within a few days of abatement of the illness.  (2)  In the past four years or so, I have had three episodes of vertigo (rotational, I think?).  The first two occurred during the middle of the night with no explanation.  I had a strong sense of the room spinning, regardless of whether I was moving or not, though it felt better to hold very still, and the nausea was strong enough to be scary, but not enough to make me throw up.  I may have had mild high-pitched tinnitus or slight ear fullness with these episodes, but it was quiet in the room and I have had mild high-pitched tinnitus (not bothersome) for years anyway, so this is difficult to determine.  For the first two incidents, I held still for about 45 minutes to an hour, gradually feeling more like I was stable and able to sleep after that, and the symptoms resolved on their own.  The third time it happened, I tried the Epley maneuver on myself (yes I know you're not supposed to do that) and experienced immediate relief.  I felt a residual effect for the following day or two but it resolved without problems.  I do not remember the dates for these episodes, but they all occurred at least a year apart, and I'm pretty sure the last one was at least a year ago or more.  I chalked them up to "ear rocks" and was relieved to have found a treatment option that worked, and didn't think about it much after that.

Okay... so... fast forward to the beginning of the year.  I believe it possibly important to mention that my husband offered to buy me a new pillow for Christmas, and I like down pillows but found my current one inadequate, so I chose a "super dense" down pillow and began using it as the new year (2016) began.  I had trouble sleeping comfortably on it, though.  I sleep in all positions, usually starting out on my stomach or side and ending up on my back by morning.  The pillow pushed on my cheek, resulting in sometimes waking up with a sore jaw.  Like an idiot, I thought "I should really try another pillow" and then did nothing.  Life was busy and stressful already, you know?  Three young kids and part-time job at home and busy busy busy.

Sometime in January or early February of this year, I'm not sure exactly when, I noticed that my ears felt like they had fluid in them.  When this didn't clear up after two weeks, I saw a GP who looked in my ears and said they had fluid but did not appear infected.  He gave me a nasal steroid (fluticasone, 1 squirt in each nostril once a day) and said to come back in a week if they didn't improve.  Within a week, my symptoms had receded enough to not worry about it.

Fast forward to March.  I had a slight recurrence of the issue and started the steroid right away.  The symptoms persisted for a few days and gradually receded.  The only symptom I had at both these episodes (that I'm aware of) was the sensation that my ears were full and wouldn't pop correctly.

The third (and current) episode began on April 11.  I noticed the same sensation.  I started the steroid, but forgot to take my dose because the symptoms had reduced a bit.  Saturday morning, the symptoms had flared again.  I woke up that morning on my stomach with my head turned far to the left and my left jaw sore.  That's the first time I can remember the sensation of a new tinnitus in my left ear, which was now much more closed than the right.  It was a low-frequency thrumming, like you hear when you walk into a large room with a ventilation system running.  I thought it was due to clogged ears, as I had the sensation of hearing my own voice a bit louder than usual, much as it sounds when your ears are clogged up due to a cold.  I started up on the nasal steroid that morning and applied it faithfully throughout the following weeks (with the exception of yesterday).

It was at this point that the irritation about my condition began to grow into anxiety.  I was trying to identify the new noise in my ear and started researching about tinnitus, which led to a full-blown panic as I read story after story of people whose symptoms never resolved or were next to impossible to treat.  The tinnitus would come and go in intensity, which I believed at the time was still due to clogged ears.  I was desperate for relief.  I saw my GP April 21, and he reassured me that although he didn't see fluid in my ears and they looked normal to him, it was probably just ETD and I needed to give the steroids more time.  I called him the next morning and asked for a referral to an ENT, just to make sure nothing was wrong with my hearing.  Unfortunately, the wait for an ENT visit here is long.  They originally scheduled me for June 22, and when I called a few days later begging for sooner, they moved it up to May 23.  They have me scheduled for an audiogram and office visit on that date.

Over the ensuing days, my symptom of closed-off ears slowly got better, coming and going a bit, but generally getting better.  Volume of people's voices, ambient noises, etc., seemed to improve, but the tinnitus never quite left, so I will still plagued by a sense of low-frequency thrumming and a feeling of hearing loss, in the left ear for sure.  By April 27, my right ear seemed almost normal (hard to tell with the other one still closed off) and my left ear opened up just a little that night.  But it wasn't immediate relief.  It was more like I could hear certain sounds again, but through a clogged tunnel.  This fluctuated for another day or two.  At some point, I realized I could hear mostly normally IF the center of my ear was pointed at the incoming sounds, but was still experiencing that "tunnel" effect, though it had widened.  Some ambient sounds still seemed absent or muffled, not sure which, as the tinnitus might also have been drowning them out.  I had good and bad hours/days during this time.  Typically, the tunnel would narrow or close in the left ear at night and sometimes in the right just a little (never as bad as the left).

I worked myself up into a frenzy, panicking about these symptoms.  In the past two weeks I have lost almost 10 pounds (I normally have a difficult time losing weight) and have been afraid to eat lest it somehow make my symptoms worse for TMJ or Meniere's.  On the bad nights, I haven't been able to sleep more than a few hours, due to panic over symptoms of ear fullness and tinnitus that I can't seem to control.  A few days ago, I noticed that in response to certain loud noises (especially my children yelling) and my own voice, there was an effect in my left ear (possibly right but I don't think so?) that sounds like when someone talks too close to a microphone and it sounds echoey or wooshy.  I can feel the same vibration when I run my finger over that ear, so I suspect tensor tympani syndrome, which may have at a low level been responsible for the low-frequency thrumming effect, though it's difficult to tell.  I did not knowingly experience it in response to loud noises until after my ears began to open, at least not at this level.  This was late last week.  At about the same time I became aware of the TTTS, I developed a mild sound sensitivity/hyperacusis or misophobia (I don't know which) at the same time; I don't know if the TTTS (or my fear of it) caused the sensitivity or vice versa.  During a particularly bad night (Saturday, April 30), I tried pink noise, streamed from my Spotify account, which didn't seem to help at first, but gradually seemed soothing and enabled me to sleep.  Over the ensuing days, I have spent a great deal of time listening to various pink noise tracks (some help, some bother my ears) and have experienced some solace and possibly reduction of my sound sensitivity.  Today, for instance, I took a walk in the morning and left my headphones around my neck instead of putting them on, and despite passing traffic, I focused on not worrying about sound and even my TTTS seemed to go down.  Everything is still louder than normal, but when I'm not fearing that loudness, it seems to be less likely to produce pain in my ears.  I'm still experiencing the buzzing/fluttering symptoms, but they are not as alarming now, and my noisy children seem to be just a bit more tolerable this morning.

Over the course of about two weeks, I went from believing I had ETD to believing I had atypical Meniere's (the dizzyless type) to believing I had hyperacusis to believing I had TMJ masquerading as Meniere's to believing I had Meniere's again.  This morning, I'm currently still holding out hope for TMJ, and am terrified that I'm wrong and it's dizzyless Meniere's.  I know that's quite a rare condition, but two of my bad days happened after I consumed salty/processed foods (a bratwurst in a bun and Jello Saturday night, a bowl of rice in Campbell's chicken broth and Jello last night), and hypochondriac that I'm rapidly becoming, I find it almost impossible to ignore a possible connection.  My plan for now is to go low-salt (difficult in combination with eating a soft diet in case of TMJ) and see if that controls the "bad" days.

I know I need to see an ENT to find out if I have any actual low-frequency hearing loss or not.  I'm desperately hoping for a normal audiogram.  I listened to a tone generator online and heard a dip around 3500 Hz in each ear, more pronounced in the left, and of course that freaked me out.  My husband says notched hearing is common though, particularly for people who listen to headphones at too-high levels, which I stupidly have done a lot lately.  I don't think that's the reason for my symptoms, as it does not explain all of them, and I'm now wondering if I even actually have hearing loss, as on a good day, I can hear normally out of certain directions in my ears, or at least, it seems that way.  The tunnel effect is still there, although it is a lot better after two weeks than it was.

Sorry, I know I'm writing a book here!  To recap... my current symptoms include continuing fluctuation in ear fullness/pressure, from a complete block with amplified tinnitus at the worst, down to a lingering feeling of water in my ears at best, like when you first step out of the pool and you can hear but there's water in there.  The TTTS is still there, though it seems less today (though that may be due to me paying less attention to it).  I'm not even sure the low-frequency rumble tinnitus is still there.  It was at its worst more than a week ago, when I described it as "roaring," and that happened roughly in concert with my initial freaking out.  Now, it's very quiet, if there at all.  I haven't heard it much in the past few days.  I don't really want to pay attention to it in case it would then flare up.  The normal high-frequency tinnitus is still somewhat amplified, though it seems to get better when I'm not paying attention or not freaking out.  Yesterday afternoon, in both ears, I had multiple experiences of the ringing that is common to the healthy population, where it suddenly rings and then fades over the course of 20 seconds to a few minutes.  This, of course, triggered fear and panic, which may (rather than the sodium) have been part of why I had increased symptoms last night, as stress seems to worsen all conditions I've considered as possible sources of my problems, except maybe the ETD.  It could also be the fact that I didn't take my nasal steroid yesterday morning.  (I've taken it this morning.)  I know that I haven't been drinking enough water, and I've had unfortunate gastrointestinal symptoms due to the panic; my tongue and lips are frequently dry.  I'm trying to focus more on that now.  I know I also have to get my food intake up, though that scares me because of fear of unknown sodium provoking an attack, if it is indeed Meniere's.

Other symptoms:  Once I started paying attention, I've noticed a lot of ear and jaw pain that comes and goes.  I had a massage a week ago and the massage lady said my head and neck area was VERY tight and a mess, and particularly sore in front of and just below the ears.  If I clench my jaw or move it forward, backward, or side to side, I can hear my high-pitched tinnitus temporarily increase in intensity.  It also sometimes does this for a while if I'm currently in a panic.  Up until about a week ago, I could not stand to be in a quiet room.  Now, I can tolerate it for short periods, though I still much prefer low-level noise.  High frequencies are more likely than low to set off my TTTS or bother my ears.

So... what do you all think?  What is most likely to be causing this?  I stopped using the bad pillow about a week or so ago and started forcing my tongue between my teeth because I discovered that I clench a lot during the day.  This would have been particularly bad because, for about 1-2 weeks before onset of symptoms, I had changed my caffeine habit from 1-2 times a week to daily chai tea and switched to coffee just as things were starting up.  I stopped all caffeine about a week or so into symptoms, when I discovered this might be more than just ETD.  My general progress has been positive, though fluctuating.  I'm hoping and praying it's all a result of that stupid pillow and me wrenching my jaw in the wrong direction too many times, that it's referred inflammation and/or swelling that's affecting my hearing and causing the muscle spasms, and that the ear symptoms and TTTS and jaw pain will all fade with treatment.  I'm set up to see a TMJ dentist this Monday.  I'd prefer to see the one neuromuscular dentist option I have in town, but they're not in network with my medical insurance.  So... I'll start with this guy and see what he has to say.  I'm really hoping he'll be willing to at least try some muscle relaxers and other conservative management.  I feel iffy about a splint.  I hear they can sometimes do more harm than good.  I could really use some "good" about now.

I should reiterate that I have experienced no dizzyness or vertigo whatsoever, other than a slight dizziness I sometimes get when I'm lying down (I've had that for a long time, perhaps years).  I also don't think I've had hearing loss, though it can be hard to tell and I won't know for sure until either my ears open up fully or I've seen the ENT for hearing testing.  I'm clinging to the knowledge that things have been improving over the long run, and that Meniere's usually (though not always) presents as episodes with recovery in between, and my pattern thus far doesn't really match that.  If this is Meniere's, it's definitely not following the typical symptom patterns.  Hoping and praying and PRAYING it's not Meniere's...

Thanks for reading this ridiculously long post!  I would GREATLY appreciate any input, suggestions, advice, stories, whatever, that any of you might have.
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Moink

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Reply with quote  #2 
A couple more things I forgot to mention.  My ears always crackle when I swallow, particularly the left.  They also crackle if I yawn or even sometimes just upon opening the jaw.  The Valsalva maneuver has mixed results, sometimes making my ears open, sometimes making them less so.  I have basically stopped attempting it since the "tunnel" effect began, about a week ago or so.  Also, if I open my jaw wide, it sometimes moves to the side as over a bump on the right and left; I can't close it straight, either, but more in a curved fashion.  Also, I had a crown put in on a left upper molar; I don't remember when... I think three years ago or more.  The dentist stated it was a very difficult place to reach, as I have a small mouth, and it hurt like the dickens after they put it in.  I had to have them adjust for bite a week or two later because the teeth weren't lining up.  I never did feel perfectly sure that they got it right.  If this is the source of my ongoing problems (though why it took until now to surface I don't know), I'm hoping the TMJ dentist visit will illuminate any bite issues severe enough for correction.
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janeygirl

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Reply with quote  #3 
no apologies necessary, we've all been there in one degree or another. I don't know enough about what you are talking about to offer suggestions but wanted to let you know we care and are there for you. It is good to work with a good ENT and asking the nurse of the practice ahead of time before making appointments has worked for me. Make a list of the questions that you are seeking and make sure they answer them. For me, getting someone experienced in what I was going through was vital, otherwise, it was a waste of time. When I first got Hyperacusis, the first ENT smacked his lips and said just drink milk, it tastes good and your problems will be gone. When I found out about TRT, I took brochures back to his office with a note saying fyi, this would be quite helpful for you to look into for your patients. Please hang in there!


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Jane Parks-McKay
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Moink

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Reply with quote  #4 
Thank you janeygirl.  I still have my panic moments but am hanging in there.  I know this is a difficult constellation of symptoms to address and that I will likely have to be patient regardless.  I appreciate your reassurance.
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TeresaD

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Reply with quote  #5 
Hi Moink,
First let me tell you that I just registered here and yours is the first post I've read. I'm beside myself right now because you've just described my symptoms almost perfectly! Let me tell you a little about me. I'm 51 and I had this once before about a year ago. I believe it stemmed from either a. A fall I had that hurt my neck or b. A bad yoga move that hurt my neck. I went to ENT and neurologist and all tests were normal. My chiro always said my neck as 'a mess' and I started going to physical therapy. The therapist told me the same thing they told you, that my neck was very tense and the muscles around the neck and upper back were almost in a spasm. She worked on these areas and about 2 months later my symptoms slowly faded (except my tinnitus which I've had for many years and is moderate). Fast forward to this year. About a month ago, like an idiot, I decided to try Pilates. Nothing out of the ordinary, just some simple exercises. Within 2 days, my symptoms returned! I couldn't believe it! That feeling of water in the ear, pressure/fullness, some sounds making your ear flutter or vibrate (with pain) like you have a bad head cold, that almost electrical-feeling hum. Certain sounds really hurt, like a plane flying overhead, or a fan, the AC coming on, toilet flushing, faucet running, my dogs barking, trucks idling. On top of that, my tinnitus is very loud and high pitched, like a jet engine! Also, I find myself clenching my jaw a lot so have to constantly make myself release it. I like the idea of keeping your tongue there, I'm going to try that. I notice my jaw is very stiff when I wake up in the morning. Also have the ear crackle and find myself popping my ears all Thetis to no avail.
So, with that said, I went back to another ENT (I'm living temporarily in Dallas so couldn't go to the same one, which is fine since he couldn't do anything anyway. This ENT is a neuroTologist so I had high hopes. They did a test for hydrops and he said it was normal but he gave me a course of Medrol to take just in case (???). He said "I have no idea why your ears are doing this." I can tell you, I didn't take the Medrol. The first neurologist gave me the same thing and it did nothing for me other than make me sick to my stomach. I've had these symptoms this time for about a month and I've had good and bad days. Sometimes I think it's gone and I wake up the next morning and there it is! I think it's funny what you say about your pillow because the first time this happened to me I changed from a medium size pillow to a really flat down pillow. I still use it so nothing has changed there. My chiro is the one that told me to use a flat pillow for my neck.
I know this is long but I wanted to make sure you know you're not alone. I wish I had more to give you but I can truly say that stressing about it definitely makes it worse! I suffer from anxiety as well so it sure doesn't help! Keep your thoughts positive and believe that this will pass. It does for most! I'm going to stay hopeful that mine will resolve itself like it did the first time. I'm moving back to Florida in about a month and will be going back to physical therapy. I will keep you updated and please, do the same! Wishing you the best!! One little hopeful note though, look up Dr Silverstein in Sarasota, FL. There seems to be some hope with a new surgery he's conducting.

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Teresa Denney
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jimmybpowell

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Reply with quote  #6 
Moink, I have had the Hyperacusis for three years and am considering Dr. Silverstein myself.  But it sounds like you might talk to your family doctor about some temporary anti anxiety medication to get your nerves a little under control.  They help me control my back problems  as well as the Hyperacusis when I just have to be around noise.  I know people say that causes H, but they say  that about everything and have no real facts.  Tonight I have had to take some Librium in preparation for going to a big 100th birthday party in another city.  It should help me deal with both problems and give me a little sleep too.  Cognitive psychological books and similar mind controlling techniques might be helpful also.  Hang in there and don't be too surprised if the ERT doctor has no clue.  Use ear protectors if you have to but the occlusive sound of my own voice makes that difficult for me.   
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Jimmah
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Moink

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Reply with quote  #7 
Hi everyone!  Sorry for the delay... it's been really busy trying to keep up with Mother's Day and my daughter's birthday the past few days, along with all the ear-symptom craziness.  However, I have good news to report.

Sure enough... TMJ event!  I saw a TMJ dentist this morning for x-rays and an exam.  I described my recent history and symptoms to him, and he agreed with my suspicion that the bad pillow started the whole thing.  He said that my overall jaw alignment/bite aren't bad, and evidence of wear and tear isn't bad either, but that I might have a predisposition to TMJ problems under the right circumstances (I have a slight overbite), and using a terrible choice in pillows for a few months was enough to cause a flare.  He also believes that with continued care (resting the jaw, anti-inflammatories, etc.) and a flat-plane splint I can wear at night, my problems should completely resolve and not return.  Other than ear-infection issues growing up, I have never had problems with my ears like this before (it feels different if it's from a sinus infection or something), so it stands to reason in my brain that I won't have them again if I don't recreate the circumstances under which these occurred... bad pillow, plus heavy caffeine use and extra stress and dropped supplements all in the 2-3 weeks before this flare.  Anyway, I asked him if I had to wear the splint for good going forward, and he said I can try stopping use of it after a while if I want and see what happens, but at least I'll have it if symptoms do recur.  I don't appear to be a night grinder, so at least I don't have to worry about that.  I fully intend to control my day clenching until it becomes habit to hold my jaw properly.  I will also be changing the way I handle stress in my life.  I've been wanting to do that anyway.

I am happy to report that my hyperacusis has nearly disappeared over the past few days (I'm no longer experiencing pain with loud noises) and the ear spasm/flutter seems to be very gradually getting better, though I've noticed it will flare up if I'm stressed or paying too much attention to it.  This to me says it's psychosomatic and will disappear entirely with time (or at least the protective tensor tympani will go back to triggering at normal noise threshold levels).  It didn't appear until I had thoroughly and completely lost my head about the whole thing, couldn't eat or sleep much, and was stuck in fight-or-flight mode for days at a time, which supports the likelihood that it's more related to my nerves than anything else.  If my TMJs are the source of that problem, it will likely resolve with time, anyway; so I'm covered both ways.  As far as my hearing, the ears are very gradually opening up; I seem to be able to hear at very-near-normal volume now, though there is a residual feeling of fullness/stuffiness.  The distorted-hearing effect is gone or nearly gone.  The ringing has subsided to near-normal levels, perhaps even normal at times.  I had very mild high-pitched tinnitus beforehand that I only heard in very quiet environments, so I'm not expecting that to go away entirely, and it doesn't bother me.  I can stand in a quiet room now and not go nuts.  It's fantastic.

I'm still on 400 mg of ibuprofen at all times (except for a few hours at night if I don't wake up) and will slowly taper this off once the jaw pain subsides completely.  I'll stay on the nasal steroid until my ear symptoms have resolved, then drop that as well.  If symptoms do completely resolve as expected, I will probably wear my splint religiously for a while, then see what happens if I take breaks from it, and make the decision about how often to wear it after that.

I did consider asking for anti-anxiety meds, jimmybpowell, and looking back, I think the whole ordeal might have been much easier to bear if I had.  Should I ever have an event that thoroughly scares me as much as this did, I think I may pursue that route in the future.

TeresaD... I know how wonderful it is to find someone with a symptom set like yours whose situation is turning out okay!  So, I hope my story is of some help to you.  Stories like it helped me from going completely insane while I was trying to figure out if there was hope for me to get better.  I think you should DEFINITELY get checked out for TMJ problems.  Keep in mind that I'm not a doctor, of course, and I can't give out medical advice, but I can tell you what worked for me.  Knowing what your triggers are seems to be helpful, and even before you get checked, you can do some simple steps that help your jaw to rest in the meantime.  The most effective for me was the removal of the trigger (in this case, the pillow) and being careful to sleep only on my back for the near future, and the deliberate choice not to clench during the day, which takes mindfulness and persistence to change the habit but is well worth the effort.  I also really recommend sticking to a soft-foods diet until the flare recedes.  In combination with the anti-inflammatory, I think those things made the biggest difference for me.  I've read that the important thing is to break the muscle-spasm and inflammation cycle that's going on in the region of your TMJs, and that allows your ear area to resume its normal function.

I wish you the best of luck!  Thanks to you all for your input.  Moving on from this awfulness feels really great, and I can't wait to put it behind me for good.  I'll update again if (likely when) my symptoms resolve fully.
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Madmaggot

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Reply with quote  #8 
For seven years day and night I had vertigo and tinnitus that sounded like a Geiger counter in my left ear. My eyes would jiggle exactly in time with the clicking in my ear. I had three MRI brain scans, two lumbar punctures and a ct scan of my head and neck. No one could find anything wrong with me. For a long time I relied on medication to keep me from vomitting and I couldn't walk even to the toilet. After about a year I learned to walk like this. I eventually got on with my life while living with continuous episodes of tin us and vertigo with seconds to a minute peace between episodes of hell tha went on for up to two minutes at a I me.n I lived and functioned in the seconds to a minute between these "attacks," and eventually I didn't need medication to prevent vomitting as it no longer bothered my stomach! I have no idea how I lived like this. It amazes me even now. The reason I'm replying to you is I read your experience with the pillow and your jaw. I also had this exact problem. I still have to be careful with my pillow and how I lie as it can upset my jaw. But last year in July I had wisdom teeth problems requiring two of my wisdom teeth to be removed. M during this time problems with my teeth which related to my jaw showed up and I went searching for someone who could help. I stumbled on a dentist who also worked with a facial surgeon with a special name I can't think of right now
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Madmaggot

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Reply with quote  #9 
Sorry my post must've been too long. It cut off. But I found a dentist who worked with an ENT specialist and a facial surgeon that deals with bones. I had a 3D scan done of my skull which showed my skull bones from outside and inside. It showed my jaw and skull were deformed from birth. This is why my teeth can't bite together. The only teeth I had to chew on we're my wisdom teeth and they were removed. So a porcelain device was made for my mouth so that I could chew. Like false teeth that fit over the top of my real teeth. Just my bottom set of teeth. After two weeks my tinnitus was completely gone but I still had vertigo and my eyes kept jiggling making things look like they were shaking and jumping. After two more weeks even my vision problems and vertigo were almost completely gone! I still can't believe it. I have never had tinnitus again but when I'm tired my vision may jump for a few seconds and then stop. Honestly it's not a problem any more. How I lived like that for seven years I have no idea. I am 49 in a few months but feel I've had a resurrection! What you described about your pillow - sounds like me. Obviously my jaw had been the trouble all along. If you can find. TMJ specialist and or facial surgeon that deals with the bones of the face and jaw etc, you might find an answer.
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Aplomado

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Reply with quote  #10 
Good news Moink!  Keep us informed please.
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TeresaD

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Reply with quote  #11 
@Moink, you have no idea how happy I am to hear that you got some relief! I've been trying to keep my jaw unclamped during the day and even at night when I wake up I release it and open and close my mouth several times to loosen the muscles. Can I ask you if you took any steroidal anti inflamatories other than the spray? I have my prescription for Medrol and I'm thinking of filling it and taking it to see if it'll help. When I get back to FL I'll look for a TMJ specialist a well. My symptoms still come and go. I've had some good days but the last couple of days have not been good :-(
Please update with your status when you can and thanks again for posting!

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Teresa Denney
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janeygirl

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Reply with quote  #12 
Hello there, so glad we are here for you and thanks for your kind words!



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Jane Parks-McKay
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Mummy_D

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Posts: 85
Reply with quote  #13 
Hi moink so late here so apologies this is brief, but search and read my post "hope" from 17 August last year. I hope it helps x
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Moink

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Reply with quote  #14 
Hi all.  It's difficult for me to update today, but I know how frustrating it is to see so many stories online that don't get updated, and you don't know if the person in question ever fully recovered.  I will attempt to remember to keep the updates going.

First, the good news:  My hearing levels have, as far as I can tell, returned fully to normal, at least as far as volume and "wideness" is concerned (I felt as if I were listening through a tunnel in each ear, which first fluctuated and then gradually widened as time went on).  The sense of "fullness" is either gone or faint enough that I don't really detect it.  Ear pain has significantly reduced, although it spiked in my left ear over the past 1-2 days, along with the tinnitus (better today).  There is still jaw and facial pain.  I'm still taking 400 mg of ibuprofen every 4-6 hours.

I do still get the feeling that my hearing is slightly altered or different than it was before, although this is much improved.  I believe it is due to the muscles still in spasm.  The ear fluttering is definitely still there, sometimes worse and sometimes not as prominent.  It rarely occurs outside or in open areas; mostly with contrast between normal-volume sounds and quiet, closed-in environments; and is worse when I'm upset or nervous.  This symptom's severity seems to have a lot to do with how much attention I'm paying to it, and if it gets stimulated a lot (my noisy children in the house for instance) and I don't throw the headphones on with some pink noise or nature sounds, it will annoy me and then seem more prominent.  The ear symptom most troubling to me now aside from the fluttering is the high-pitched tinnitus, which seemed to spike over the last couple of days.  It was a bit better this morning.  I'm still trying to determine how much of this coincides with my state of nerves.

Honestly, the nerves thing is, bar none, the worst part of this whole thing.  I was so positive that discovering the likely source of my ear problems would calm me right down.  It did not.  The day after my TMJ diagnosis, I remember pacing and crying and shaking while talking to my mom on the phone (outside where the ear fluttering was less), completely unable to bring my body out of fight-or-flight mode for the first time in my 35 years of life, and not understanding why.  My husband, at some point, mentioned that I was on a few meds I wasn't on before, and then, it clicked.  The steroid!  I googled Flonase (I was on the generic) and was shocked to discover that, although its makers don't list anxiety as a side effect, anecdotal accounts of extreme anxiety reactions very similar to mine were all over the place online.  Reactions like these to corticosteroids are much more likely to happen with systemic forms, particularly in high doses.  The medical community considers so little of Flonase to become bioavailable in the body that systemic reaction should be rare if not impossible.  And yet, it made so much sense.  I had experienced many concomitant symptoms upon taking prednisone for a few days while suffering mono about a decade ago... inability to sleep more than a few hours a night, burning and tense muscles, not wanting to do anything, the feeling of not wanting to be in my own skin at that point in time, just waiting for each moment to pass so I could get to a potentially better one.  I believed these to be mono symptoms, so although it was not a fun experience, my anxiety never got out of control, as I was certain my misery would pass with time.  It is my belief that even if the Flonase did not cause anxiety directly, my fears about my ears, coupled with the Flonase reaction symptoms, plus other possible factors (mounting stress and possible depression in recent years, high caffeine use prior to onset of ear symptoms, etc.) all created the perfect storm that sent my anxiety state over the edge, and I got stuck in fight-or-flight mode.

I begged my doctor for help.  He didn't think it could be the steroid, but I immediately stopped taking it anyway, and he prescribed Xanax for short-term relief of my extreme anxiety and saw me about a week later.  By that time, my anxiety had definitely improved; about three or four days after stopping the steroid, I progressed from derealization and depersonalization to a sense that I was me again, just a VERY anxious and messed-up me.  At my appointment, we discussed options and decided to start me on an SSRI, using Xanax in the meantime for short-term relief.  It has been a life-saver.  It doesn't return me to normal, but it calms the anxiety enough that I can just "be" for a little while.  I am now on my 10th day of generic Lexapro, the first 7 days at 5 mg and then switched to 10 mg.  I've always disliked the idea of being on mood-altering medication and was very scared to take it, but when you find yourself in a state of anxiety this bad, you are willing to try anything for relief.

This Monday (three days ago), I finally got to see both an audiologist for testing and an ENT.  Apparently my hearing is fine.  The audiogram was almost straight across, and the tympanogram? yielded "normal" results.  This was wonderful news, if not helpful in determining the source of my remaining problems.  The ENT seemed dismissive about my ear flutter, but when talking to him about the tinnitus, he did mention that the ear muscles can spasm and become tense (which I already knew) and suggested physical therapy for my very tense head and neck.  I may pursue this, if I can find someone around here who knows what they are doing.  I found a video online on how to find and massage myofascial trigger points, and was fascinated to discover that pressing on certain ones, especially behind the ear and around the jaw, could alter the volume and possibly the tone of my high-pitched tinnitus, and could also set off ear-fluttering, even independent of sound input.  This cements my belief that my problem really is pent-up energy and inflammation in the ear, face, jaw, and neck muscles secondary to my TMJ strain.  Why this knowledge has not brought me out of fight-or-flight completely, I cannot explain.  Something is out of whack with my nervous system.

So, here we are.  My fears about becoming dependent on the Xanax have caused me to occasionally try to skip doses here and there, resulting in rolling waves of tears-inducing anxiety and "that was a bad idea" as a response; but, other than that, there has been SLOW improvement in my anxiety.  The first week off the steroid saw the most improvement, but it has been very, very gradually getting better since then.  Lexapro can take weeks to kick in, especially when starting at low doses, but the side effects have been minor, which is a relief.  As long as I take my 0.5 mg of Xanax three times a day, I don't sink too far, although there is sometimes breakthrough anxiety between doses (Xanax has a short half-life and doesn't get me through the full 8 hours).  Methods that didn't work before, like positive internal self-talk, now seem to have a slight effect, although they don't bring me back to baseline.  Nothing has as of yet.  I'm hanging on, waiting for the SSRI to kick in, and praying this drug works for me.  I would give ANYTHING right now to look inside and see a normal mood state... to be able to relax, to feel safe again, and to enjoy life happening around me.  I read many positive reports online about this drug, posted by people who were in similar states (or worse) than me, for whom the drug brought them out of it.  I just don't want to feel like this anymore...

If any of you have had experience with your tinnitus/hyperacusis/etc. causing you to have severe anxiety, and have come out on the other side of that... any encouragement would be much appreciated.  I feel like I'll never be able to relax fully ever again.  Even though I know this is likely not true, right now, it feels like it is.

I believe the biggest obstacle I face currently is the fact that my anxiety, ear symptoms, and TMJ symptoms are all reinforcing each other, and I have not yet managed to fully break that cycle.  I received my flat-plane splint today and will start wearing it tonight.  My dentist thinks it likely that I will start experiencing relief of my remaining ear symptoms in the first few weeks, although recovery time varies significantly for individual cases.  If I'm lucky, an easing of symptoms might combine with the escitalopram (generic Lexapro) kicking in and restore me to baseline.  I am still convinced that my anxiety state has a lot to do with the ear fluttering, as it seems to be less of a problem when the Xanax is active, and I was actually relaxed enough the other day to not notice the fluttering at all for about three to five minutes, even when I allowed myself to look for it just a little bit.  I think it also possible that the high-frequency tinnitus I'm hearing would be something my brain could learn to ignore if it would stabilize.  It might even be just my pre-existing tinnitus (which never bothered me before), amplified by my frightened nervous system.  Hoping and praying, again, that the medicine eases some of this for me, and above all, that it takes me out of fight-or-flight mode altogether.
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Aplomado

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Reply with quote  #15 
Thank you for your update.  Please keep us informed.

After contracting hyperacusis I took xanx for about three weeks also to deal with extreme anxiety.  I tapered off it after realizing I was becoming dependent on it, and noticing the effectiveness was declining.  The feeling of craving for the drug was very disturbing to me.
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Moink

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Reply with quote  #16 
Yeah, I have no intention of staying on it long-term.  The doctor gave it to me just to get through the initial waiting period for the SSRI to become effective.  He said that as the escitalopram kicks in (at least if it works for me), I will find myself needing the Xanax less and less.  I hope he's right.  Most people see results in the first 3-4 weeks, so I need to be patient, tough as that is.
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TeresaD

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Reply with quote  #17 
Moink,
I really feel we are living parallel lives. Your symptoms are so much like mine it's scary (in a comforting way, if that's possible). My anxiety is also out of control (I can barely drive). The ear fluttering, jaw and face stiffness, painful ears, I got it all!! I just saw my doc today and he put me on Zoloft. I start tomorrow. I'm also starting physical therapy next week so I'll keep you updated on that as well as the SSRI effect. My tinnitus has also spiked and is very high pitched (like those old computer monitors that would sometimes give out really high pitched sound, or maybe a dog whistle if we could hear it?) I don't know, hard to explain how it just pierces my brain. The only thing I haven't done is seen a dentist, but I'm scheduled for a cleaning in a couple weeks so I'll bring up the possibility of TMJ and splint to see if that helps. Please keep the updates coming and I'll do the same!

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Teresa Denney
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Moink

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Reply with quote  #18 
Yeah, TeresaD, mine sounds like an old CRT monitor, too, or the old TVs.  It's an amplified version of what I had before, I think, with possibly some multitonal qualities that either weren't there before or I didn't notice them before.  It was pretty bad for a few days, and today, it's quieter.  I like to think the SSRI is kicking in and helping me level out my emotional responses to my T and ear fluttering, and also that the work I did yesterday (alternately "facing" my T--trying to be comfortable with it--and masking it for relief with pink noise and nature sounds) has helped my brain to start retraining itself.  Who knows, though.  I've only been wearing my flat-plane splint for two nights now, so I know that's not likely to be showing results yet, but there's a little part of me that can't help but hope.

I'm currently focused on trying to learn how to handle the ear-flutter issue.  It does seem to be some sort of middle ear myoclonus, probably a form of TTTS (as described earlier, sound-sensitive; sounds like a flutter, thump, or the noise that results from someone talking too close to a microphone; happens during or slightly after each distinct sound; triggered by my own voice, other people talking--particularly my kids--and any noise that is in high contrast to quiet surroundings; can be triggered by touching certain parts of my face and/or ear; seems to be more or less sensitive randomly, possibly related to whether I'm between Xanax doses, and influenced by my anxiety state and definitely by how much I'm focusing on it).  I may have had a milder form of this before my recent ear problems, with a much higher threshold, but it was never enough to bother me then.  I first noticed it after my ears started to open up, maybe two or three weeks in; sounds were noticeably louder, of course, and I was super-focused on my ears and in complete freak-out mode at the time.  In fact, I remember the exact moment I first became aware of it.  I was sitting at my computer and both my children were trying to talk to me loudly at the same time (6-year-old and 2-year-old with no volume control), one in each ear.  It's been there in some form ever since, often worse for a time after moments when my ears would open up and hearing volume would improve.  I thought I had hyperacusis at first, and then that I didn't.  I continued to believe I didn't until my birthday a week or so ago.  I was pretty happy because my ears decided to open up that day, but as a result, they were a bit more sensitive, and the restaurant we went to for supper was a loud one with a lot of dishes clanking.  I was a bit distressed by the noise but had no ear protection with me at the time.  I noticed an uptick in both tinnitus and ear-fluttering sensitivity after that, and my ears felt fatigued.

So, now I don't know.  Is this mild hyperacusis?  Most of the time, I'm actually more comfortable in an environment with a fair bit of noise, as long as it's outside or in a large room so there isn't a lot of contrast.  With that in mind, I'd be more inclined to think it's maybe some form of misophonia or phonophobia, then... but can TTTS occur with those and not hyperacusis?  I'm not sure how to proceed with it.  I'm able to either stop or mask the fluttering by putting my headphones on.  When it's bothering me, that's what I do; I play either pink noise or some sort of nature sounds, like rain or waterfalls.  Is this helping or hurting?  Sometimes, when I've been in headphones for a long time and I take them off, the fluttering seems less or not at all for as much as a few minutes, depending on the sounds in my environment.  I'm not sure if I should just let the flutter happen in a "normal" environment (though I have young children so I don't know if all the racket they generate is safe or not) or if that's going to make it worse.  It often raises my anxiety over time if it's bad enough that I'm aware of it, and I know that isn't helping, probably feeding right back into the problem.  I can't afford TRT, and I can't just stop being a mom and having all the responsibilities that go along with that.  I know about the surgery, and I don't want to do that; I would consider it only as a very last, last, last resort.

Sigh.  There's always the hope that it'll just go away, right?  I've heard that actually happens a fair bit in cases like this.  If I really do have some sort of hyperacusis, misophonia, or phonophobia, maybe getting that treated would cause it to go away.
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TeresaD

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Reply with quote  #19 
I find myself doing the same thing when the fluttering gets bad. I basically live with a foam earplug in my ear (not in tightly, just kind of "sitting" in my ear canal). It does help with the fluttering/noise sensitivity. The doc put me on Zoloft but I'm scared of taking it! I may ask for Lexapro instead since I've read better reviews on it. I don't know if this is H or what. My symptoms come and go. I'll be fine one week and then my ears become full and the fluttering/noise sensitivity will kick in for no apparent reason. My T has definitely become louder in the past few weeks though. When my symptoms started a few months ago, I remember thinking "as long as this fullness and H go away I can deal with the T. Now though, my T is so high pitched that it's really killing me! I have a constant headache because of it! Ugh
Like I said, I start physical therapy this week and I'm really hoping it helps in some way. I'll keep updating! Hope you are doing well.

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Teresa Denney
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Moink

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Reply with quote  #20 
TeresaD, I'm sorry to hear you've had an uptick in tinnitus.  I had a slight uptick around the time I moved from 5 mg of Lexapro to 10 mg, a little over a week ago.  I don't think the medication is responsible, though at first, I did think it was.  I've been wearing my occlusal splint approximately 1 week now, and am happy to report what I think might be improvement.  After the first couple of nights, I noticed that my T was quieter in the morning and built back up over the course of the day.  This has continued to be a consistent pattern over the past few days.  Yesterday, it took longer than usual for the T to build back up.  I'm trying not to hope too hard that this is due to the splint, as it is still very early in my treatment and I have heard that ear symptoms are typically the last and slowest to improve.  I've definitely noticed a decrease in jaw pain, too, though.  I'm able to take ibuprofen at half the dose I was and sporadically now instead of all the time.  Interestingly, my TTTS also seems to be SLIGHTLY improved as compared to, say, a week or two weeks ago.  It still flutters away at the usual trigger sounds, but I've noticed that the threshold seems to have inched upward slightly.  I find this very encouraging, as TTTS seems to be the most intractable of the symptoms people experience with their ear problems, at least according to the forums, and it's the one I know the least about how to treat.  I've been listening to pink noise and nature sounds regularly, so that is also a possible cause.  Or maybe, it's just getting better on its own.  Who knows.

There seems to be a lot of debate about what causes TTTS, especially in the absence of hyperacusis, which I'm pretty sure I don't have, now.  I used a tiller in the garden two days ago and, five minutes in, realized I had forgotten to put my ear protection on.  My ears didn't feel bothered, so I decided to finish the job.  (I know that it's a good idea to wear ear protection when using outdoor equipment like lawn mowers or tillers, and intend to on a regular basis; I just needed to know, and decided to test my ears a little this time.)  After I finished tilling, my ears felt a bit full, but there was no pain and no uptick in TTTS that I could tell.  Since wearing the splint at night, my ears typically get a bit more clogged as the day goes on and reset in the morning, which is what happened in this case.  I can't imagine that anyone with hyperacusis would have made it through using a tiller (about as loud as a lawn mower) for approximately 20+ minutes without ear protection and not had a setback.  So, assuming I don't observe any other symptoms of worsening sound tolerance, I'm going to say I've probably ruled that out.  The decreased sound tolerance I initially experienced may have simply been from my ears finally opening up, combined with the super-high anxiety I was experiencing at the time (that's lessening slowly over time).  It is possible that my ears THOUGHT they were more sensitive when they weren't, and it was the discomfort of my kids yelling that initially brought about the lowered tensor tympani reflex threshold.

Other thoughts on TTTS:  First, would this condition show on a tympanogram?  I had one with the audiologist and he said it looked normal.  I'm not sure the fluttering was occurring when he did it, though.  Also, I'm still suspecting that TMJ is part of the cause.  I know this is debatable, and some people seem to believe the two can have nothing to do with each other.  My current going theory is that the TMJ problems created conditions favorable to developing TTTS, and the anxiety about my ears, combined with the other perfect-storm factors present at onset, did the rest.  Who knows, though.

One other thing, possibly very pertinent to the situation.  At some point in the past few months, I was leaning over my youngest daughter (about a year old) on the floor in the bathroom, putting her diaper on after her bath, and my oldest daughter (about six years old) had leaned over to deal with something on the floor right nearby, and when she stood up, she was right under my face, and the top of her skull impacted me right on the jaw, shoving it upward and possibly back, quite hard.  I remember being surprised at the time that, other than the initial pain for a few moments after this occurred, I didn't seem to have any lasting symptoms.  My ears weren't ringing, and my jaw seemed fine.  I cannot, for the life of me, remember exactly when this occurred, but my best guess is February or March.  (My lasting ear problems began in mid-April.)  If this incident has something to do with my current TMJ inflammation, would it take weeks or longer for the symptoms to manifest?  I can't believe I didn't think of this possibility when I first identified TMJ as part of the problem.  I'm definitely going to mention it to both my GP and my TMJ dentist and see what they think.  The other possibility is that, even if my jaw was able to handle the impact, my neck and/or face might not have been.  Perhaps vertebrae were thrown out of alignment, a potential cause which has been identified by some as an integral factor in resulting TMJ problems, including those involving the ears.  Perhaps there is some sort of nerve damage?  I don't know.  My jaw seems relatively okay as far as alignment, according to the TMJ x-rays my dentist did, but, of course, that wouldn't show nerve or inflammation problems, and my neck hasn't been looked at yet, although I was having chiropractor treatments for a lower-spine problem in the first few weeks of April, and she did also adjust my neck to either side a couple of times (without lasting benefit to my symptoms, possibly making them worse at first).  Both she and the massage therapist at the time said there were definite problems with my neck and shoulders, though, and that I should get those straightened out.  So, when I see my GP next week, I'm going to ask for a referral to PT.  I can sometimes affect some of my tinnitus tones, even decrease them, by pressing trigger-point spots on the back of my head and on the neck near the ears and base of my skull.  Some of these points also trigger the ear-thumping.  It's got to be all related.  I'm hopeful that PT might bring my tinnitus sounds back to baseline, and maybe even help reduce the TTTS, either directly through trigger-point release or re-aligning my neck, or indirectly through assisting my TMJs in the healing process.

It's so difficult not to get discouraged in all of this.  I am attempting not to pay attention to the T, which has been off-and-on successful in the process of habituating to it.  I think that if it would remain stable, or I could eliminate what's causing the gradual uptick over the course of the day, bringing it back to baseline (I had minor T before all this which I only heard in silent rooms and didn't bother me), I would be able to forget about it and move on with my life, if the TTTS also reduced.  I know it's fairly early in the process of healing and/or learning to cope, as I have only had consistent symptoms since mid-April.  I'm not great at this patience thing.
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DutchGuy

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Reply with quote  #21 
Havent been on this site for almost 2 years. I learnde to live with it but I have this new problem I also thinnk it's tensor tympani syndrome.
@ Moink:
How is the fluttering going I have this since a few days. It also happens when there's no noise.
Feels like rumbling sounds like there's is insect flying lieke a butterfly or moth in the ear. It lasts a few seconds.
I'm kinda panicked by this new symptom, next to Hyperacusis and T. Will this go away on it's own?
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TeresaD

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Reply with quote  #22 
Hope you are both feeling better!  I just wanted to post an update.  I have been going to physical therapy for a couple weeks now and i'm feeling better!  the fullness/buzzing is not as pronounced (still there though).  The physical therapist I see has a different method, more like cranio-manipulation.  He did tell me this is more common than people think (shocker). My T is still buzzing away but, either i'm habituating or it's not as loud.  I have some bad days, but its mostly due to losing control of my anxiety.  I've taken Ativan as a sleep aid a couple times while I wait for the Zoloft to take effect.  It's funny what you said about your daughter hitting your chin.  I had a fall over a year ago and I hit my jaw on a granite counter top which made my head whip to the side.  A couple months after that is when my first episode occurred.  It went away after about 3 months and then came back in March of this year when I attempted some Pilates moves.  So, I think it may all have to do with my spine being misaligned.  I am going to dentist tomorrow and hopefully can get a splint and try that out.  I hope you can update on your status!
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Teresa Denney
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smb1229

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Reply with quote  #23 
Hello.  I've never been diagnosed with hyperacusis.  But I had pretty strong and uncomfortable sensitivity to sound for several months.  At the time, I was eating a LOT of sweet potatoes (I was strict Paleo at that time).  When I later gave up sweet potatoes, about four years ago, I noticed that my sensitivity to sound dramatically improved.  I don't really have any sensitivity now -- maybe just a very small amount.  I hope all of you can find relief -- it's such an awful condition to have.

Scott
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TeresaD

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Reply with quote  #24 
That's interesting Scott! Thanks for posting.
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Teresa Denney
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Moink

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Reply with quote  #25 
Hi DutchGuy,

I wish I could tell you if it will go away or not.  I've done a great deal of searching about TTTS and middle-ear myoclonus, of which there seem to be at least two distinct types (sound-induced and intermittent/constant), and there seems to be little known about what causes these or how to treat them.  I did find a fair number of stories, though, where it improved or went away entirely.  Some people had to have surgery to get that result; others had the surgery and it didn't help.  Some improved or got rid of it through trigger-point massage or acupuncture, or reducing anxiety, or just waiting it out and it disappeared on its own.

~Moink~
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Moink

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Reply with quote  #26 
So!  Update.  Looks like it's been three weeks since I last posted, and a little over two months since this nightmare began.

In that time, my symptoms have continued to gradually improve, with the exception of the TTTS, which seems to have good and bad days.  By "good" and "bad" I'm referring to two things:  how much I notice it, and how easily it's triggered by sounds.  My tinnitus is largely steady at this point, not too far from its original baseline pre-injury, and whether or not it's loud now seems to depend largely on how much attention I'm paying to it.  I still hear it in quiet environments or those with high contrast, which I attempt to avoid.  My ears feel marginally less stuffy now, though they still pop and crackle regularly, and do mildly ache sometimes.  My hyperacusis (yes, I'm back to thinking that's part of my constellation of symptoms) has gradually improved as well, though it has its ups and downs, too.  I have continued to wear my splint and am only taking 200 mg of ibuprofen at night before bed at this point, as much for better sleep (ibuprofen makes me a bit sleepy) and the chance at reduction of inflammation in the TMJ joint areas than for actually needing it for pain.  I'll probably phase that out soon, likely when I'm off the alprazolam (generic Xanax).  Speaking of which, I've been tapering that; I was at 0.5 mg 3 times a day for a little over a month and very much wanting to try tapering again, in hopes the escitalopram (generic Lexapro) had kicked in enough.  (I had tried it at two weeks and ended up nonfunctional, with frequent crying spells and severe anhedonia.)  So, I started tapering, almost two weeks ago now, cutting first my night pill in half, then waiting almost a week, then cutting my afternoon pill in half, then waiting another 5 or 6 days, then cutting my morning dose in half just this morning.  So far, so good!  I'm definitely noticing each change, with mood symptoms and overall jumpiness, but it's very doable.  Not like the horror stories of tapering from benzos that you find on forums and whatnot.  Granted, I've only been on them a short time.  I very much look forward to finishing the taper, though.  After a few days with this next one, I'll probably switch to two doses of 0.25 mg, one in the morning and one at night, then eventually drop the night one, then spacing out the morning dose to every two days, etc., for maybe a week, then attempting to drop entirely.  Gotta double-check with my doc first to see if that's a sensible plan.

So, yeah, the SSRI is working... I think?  Either that, or I'm just getting better over time.  It's doing something, though.  I've run across references of lex users who experience "windows" during the start-up phase (typically 6-8 weeks) in which they feel awesome, then it's back down to depression/anxiety, then up again later, and the "windows" get closer together until, eventually, that's their normal state.  This has been somewhat true for me.  My anxiety state has been very gradually improving at baseline over the past 5 weeks and 2 days of lex use (I started at 5 mg for a week, then 10 mg for 3 weeks, then 20 mg); and alongside this have been a few "windows" where I felt fantastic for several hours straight, including almost 48 hours straight (longest one yet) over this past weekend.  Each time I come back down, though, it's not quite as far.  I don't experience the relentless rolling waves of physical anxiety anymore at all, at least not the way I did.  Don't get me wrong, there's still anxiety!  It's intermittent and variable in strength now, though, and at this point, I have some influence over how I feel based on what I allow myself to think and dwell on.  That's doable.  I won't raise the dose any further than this, and as long as I don't get worse, I can work with where I'm at now.  At any rate, chances are good I'll be getting more benefit as I go.

I do want to clarify that I have no intention of using psych meds any longer than I have to.  I'm getting off the benzo as fast as I dare, and I'm hoping to only use the lex for 6 months to maybe a year, tapering off slowly and carefully.  Any medication that messes with the brain frightens me.  I've read the stories suggesting SSRIs are bad and addictive and damage your brain and create the need for permanent use and all that.  I've also heard that 1 in 10 people in the U.S. are on antidepressants (the most popular of which are the SSRIs) and that most people have minimal or no problems using, switching, or quitting them.  I'm hoping the latter is the truth.  Either way, I had to make my peace with taking the lex.  It and the benzo have both been lifesavers.  I truly believe I would have ended up hospitalized and my recovery would be progressing far more slowly if I had not had access to them.  That said, I don't believe my anxiety/depression is a permanent condition (more on that in a minute) and I don't intend to rely on medication to solve this any more than I have to.  I need to be there for my kids, you know?  I have a life to live while I figure this thing out; hence, meds.  But I'm going to figure it out.

Okay... so... here is my current ongoing theory about what has happened to me.  I mentioned the possible head/jaw injury to my dentist and he agreed without hesitation that it was likely a contributing factor, if not the primary cause of my TMJ issues.  My personal belief is that it was part of a perfect storm that descended on me in April.  The TMJ/ear thing was just the trigger that sent everything cascading down.  I suspect that the jarring effect of my daughter's head hitting my jaw caused inflammation and possibly nerve irritation or compression or some such, which didn't kick in fully until mid-April.  At that time, we had a lot of barometric pressure changes and turbulent weather here, which may have contributed.  The pillow problem likely contributed.  I had been under increasing levels of stress in the months prior, and that likely contributed.  I also believe that I would have had anxiety problems in these months anyway, even if the TMJ injury had never happened, due to postpartum anxiety/depression.  "But Moink, you were 13 months postpartum when this hit, and that's past the 12-month cutoff!"  Don't care.  Late-onset postpartum is finally becoming a recognized thing, thank God, though old-school docs aren't likely to accept it.  I suspect more stories of it are showing up now because of breastfeeding being the in thing again, and women's bodies aren't completing their hormone adjustments until after weaning.  "But Moink, the change in hormones at weaning is so much less than at delivery, that can't be the cause!"  Tell my body that.  I've got prior history of this.  I had troubles nursing my first two children, probably due to polycystic ovarian syndrome, a common female hormone imbalance I happen to have.  I stopped producing breastmilk for both of them around two to three months postpartum.  About two months after stopping, with both kids, I experienced OCD-like anxieties and fears for my kids' safety, including intrusive thoughts in which I would envision horrible accidents happening to them.  These were upsetting, but because I was still in the postpartum period at the time, I recognized them for what they were, and they never got life-alteringly out of control; so I did not seek professional help.  These problems persisted in slowly lessening degree over the course of about three to four months each time.  About one-and-a-half to two years after my first child, I remember realizing that I felt better; I was happier, life was brighter.  That's how I knew I was ready for pregnancy again.  My second child was only a year old when I got pregnant again, and I never did get to that "happy" point before this, but was in a hurry because of ticking biological clock and other issues.  Long story short... this has happened before.  I was lucky enough to be able to nurse my daughter for 11 months, and finished weaning in February.  Guess what happened two months later!?  Anxiety and OCD!  There is no way that can be a coincidence!  I have a physical with my OBGYN in July.  I will definitely be asking her about this.

So, yeah.  My theory is that the factors above, and possibly others I won't get into for now, combined to create that perfect storm, and my ear problems were the anxiety trigger my hormone-imbalanced brain was looking for to focus on.  Nobody could tell me what was going on with my ears, and the Internet's opinion was that I had hearing loss or Meniere's or who knows what and it was permanent and I was never going to get better.  (You know how it goes.)  My already-fragile emotional state couldn't handle this, and tipped over the edge.  To add insult to injury, the nasal steroid messed with me as explained in previous posts, also giving me oral thrush (and my toenails turned yellow) around the time everything came to a head, which is suggestive of candida problems, which I didn't give much credit to before now, but now am rethinking.  Two weeks of nystatin later and my tongue still isn't completely cleared up.  The alternative-medicine chiropractic nutritionist guy I'm seeing now believes I have a gut problem of some kind, yeast or no, and it makes sense, as at least 90% of serotonin is produced in the gut.  He is adjusting me and has me on an elimination diet to check for food intolerances.  No soy, wheat, dairy, corn, or refined sugar, among other things.  I can eat about 0.01 percent of what's in the grocery store.  Lol.  It was horrible at first, but I only have to do this for a month, or maybe two weeks if I can talk the doc into it.  I want to be able to eat normal stuff for the July 4th weekend.  I'm taking something called CoQ10, and am going to get tested for omega-3 levels.  We'll see if all that helps.

In the meantime, due to some spiritual help from above, I am finally accepting where I'm at in the healing process (not liking--just accepting) and am choosing not to fear my ear symptoms.  This is as of yesterday morning.  My TTTS was improved over the weekend, and back to bad as ever on Monday and yesterday.  Today, it has been variable.  When I'm focused on not fearing the symptoms and going about my life, though, I definitely think about it less, which is nice.  I still wish it would go away completely, of course, and hold out hope for that someday.  The fluttering/thumping increases (as in, it happens at lower volume/frequency thresholds) when I've been exposed to more loud, contrasting sounds for a while, like when I've been around my kids indoors without headphones on.  My ears were "quieter" over the weekend, too, as if the hyperacusis were less of an issue.  They were "louder" again on Monday.  So, the hyperacusis and TTTS seem to be related.  Makes sense.  I'm very much hoping that means that as one resolves over time, the other will go, too.  I have been unable to perfectly match their changing patterns, but maybe it's not perfectly in sync like that.  I don't know.  There is so much about how this works that I don't know.  I'm encouraged by the gradual improvement in the sound sensitivity, but worried that I'm going to have to get therapy to be cured.  I really can't afford it.  I'll keep listening to my nature sounds and broadband noise when I can, and exposing myself to everyday noise regardless of fluttering (hopefully not making it worse, even though it seems like it!) and pray that this is enough over time.

Sorry about the uber-long post.  Amazing how much can happen over three weeks' time.

~Moink~
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Moink

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Reply with quote  #27 
Wow, it's been a while.  Time flies when you're busy distracting yourself, I guess.

I figured I'd best post an update on a good day, which I seem to be having more of lately.  Again, a lot has happened since I last posted.  On July 1, I saw a nurse practitioner on my OB team, and she confirmed that yes, this is very much most likely postpartum depression complicated by the health issues with my ears.  Lucky me... as if either problem weren't bad enough in and of itself!  But, it was very comforting to have a professional believe me and confirm what I had been suspecting all along.  She was a bit miffed that my concerns had been brushed off and that I wasn't going to be able to get therapy until almost a month later, and determined to help me find help sooner.  Due to issues with my health insurance coverage, that didn't end up working out; but I appreciated her efforts.  Then, I got chosen for jury duty for the same morning as my therapy appointment.  Seriously!  It should not be this tough to get help!  I was very worried that I would have to go to jury duty and my appointment would be pushed out another two months; but, thank God, the case settled and I was able to go.  The lady I saw on July 27th is wonderful, and she agreed about the postpartum thing and is hooking me up with a specialist in postpartum mood disorders, whom I will see next week.

I am completely off the Xanax as of July 12th; I tapered over a month's time total after being on it a month, and other than feeling particularly weepy for a day or two after each dosage drop, I had no problems.  By the time I quit completely, the higher Lexapro dose was kicking in, and I didn't need the Xanax anymore.  I was concerned that quitting would cause an increase in my ear-muscle fluttering, but it didn't, as far as I can tell.  That still goes up and down depending on the day, weather, environment, time spent masking, etc.  It is the only ear symptom that hasn't responded with consistent improvement over the past few months, though it is better than it was when I started.  Or maybe I just notice it less.  I'm really not sure at this point.  Either way, I noticed that after being at a water park for a few hours this weekend, my ears seemed quieter and less likely to flutter (higher volume threshold for trigger).  I had listened to a fair bit of waterfall sounds in my stronger masking headphones earlier that day, too.  So I decided to do an experiment and see if there was a direct connection between time spent listening to nature sounds (particularly water) and lower fluttering.  I spent hours doing this on Sunday, with similar results.  It would seem that something about the sound of water, especially roaring water as in waterfalls or heavy rain, comforts my ears in some way and gets them to calm down.  My going theory currently (entirely speculation) is that when someone experiences tensor tympani syndrome or a similar problem, the ear muscle in question is either too relaxed and flapping around as a result, or too tense and spasming, and certain sounds (i.e. waterfalls) "exercise" that muscle in some way.  If you think about it, we can either relax or tense up other more well-known muscles in our body by using them in various ways; why not the ear muscles, too?  So, I'll be listening to a lot of waterfalls.  Lol.  Not such a bad thing.  They relax me, too.  Given that I believe my TTTS arose as a combination of the effect of my TMJ problems and anxiety, compounding each other, any form of treatment that addresses both sides of the issue at the same time has got to be worth a try.

The hyperacusis has receded to a minimally intrusive level.  I still get bothered by dishes clanking loudly and that sort of thing, but not enough to always drive me to headphones anymore.  I can tolerate it for short periods now.  I did have to wear my headphones on the Fourth of July, for the fireworks, but that was expected.  From what I've seen, three months of near-recovery from hyperacusis is pretty darn fast, so I'm grateful for that.  I hope it fades away fully eventually.  Perhaps the waterfall noises will help that, too.  Other than off-and-on dull aches, there is little ear pain now.  I do still have variable stiffness and aching in my TMJ areas and around the jaw, as well as in my neck and shoulders.  I've been seeing a chiro for that, but will start tapering off now to give the finances a break.  The tinnitus has been at roughly the same level for a good month now.  I'm still hoping it will fade more with time, but I'm habituating to it, too; so, I remind myself on the bad days that it will work out all right for me either way.

For what it's worth, guys, the horribleness of these ear problems really can fade away over time.  I thought I would never be able to be truly happy again.  I've had some happy days, though, and the less I worry about my ears, the less I focus on them, the happier I generally am.  Now that the Lexapro has pushed back the depression and anxiety problems related to the postpartum stuff, and probably to the ear stuff as well, I can once again choose what kind of day I'm going to have.  In fact, this whole thing has taught me that I have a whole lot more choice about that than I've ever considered to be available to me.  It really does make a difference what I allow myself to think.  There are still days bad enough that I just can't quite summon up the effort to beat back the darker thoughts, especially if my ears are acting up.  So, I cry a little, and maybe mask the fluttering; and then, I try to get things done, and wait for tomorrow.  And tomorrow comes, and usually, it's better.  And if not, I wait for the next day.  And there's always a better day somewhere down the line.  I'm going to choose to get on with my life.  I can handle the state of things for now, and I'll deal with tomorrow when it comes.

There is hope.  [wink]
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