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Teleku
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on: January 08, 2015, 08:43:49 AM

So about 2 years ago, a few months after I arrived in Poland, I lost a lot of hearing in my left ear one day.  I thought it was just sinuses or something.  However, the following day, I was sitting at the computer when I suddenly noticed the entire world looked like it was at a 45 degree angle.  I attempted to stand up, was promptly hit by the worst nausea that can be possible, fell down, and started throwing up uncontrollably for about 15 minutes straight (I mean, I was heaving and then just dry heaving without stopping for 15 minutes, barely able to breath through it all).

Eventually I was able to crawl into bed and tried to lay as still as possible, while the room literally spun in circles in my vision.  This lasted the entire night and following morning, and any attempt at moving my head even slightly resulted in a lot more vomiting.  Eventually, my vision stopped spinning, I got to the point of being able to move, and made it to the hospital.  Got vertigo meds, the sickness eventually passed and I was back to normal, except I couldn't hear much at all through my left ear, and it remained that way.  But that was ok, as my right ear was fine, and got use to it without much issue.

However, every couple of weeks, I would get hit with another one of these vertigo attacks.  Not as strong as the first, but every time I could feel one starting, I needed to go lay down for most of the day with a pillow over my face, or it would be vomit city again.  After a ton of visits to different specialist, it was determined I had a condition called Ménière's Disease.  Basically, extra water is getting into my inner ear, causing these vertigo attacks and fucking up my hearing.  Science still doesn't know exactly what causes it and it has no cure.  There are some surgery options though if the symptoms get too bad.  Change of diet is suppose to help, but I never noticed any changes while on diet or blatantly going against it.

So I went on, and after a year or so, the vertigo attacks died down.  They started coming way less frequently (several months apart), and when they did, they would only last for an hour or two.  My hearing never really recovered, but it wasn't really noticeable unless somebody was trying to speak directly at my left side, and easy to live with.  Things seemed to be finally under control.  I was content and very positive.

Fast forward to last Sunday night.  Suddenly I can't hear very well out of my right ear.  This worries me, but again hope it's just sinuses.  Monday it gets worst, until I can barely hear.  I cannot even recognize my own voice when I speak, sounds like a robot speaking through a blown out speaker.

As I feared, another terrible vertigo attack hits, and I get to spend most of Tuesday (a holiday in Poland) in the ER, unable to hear anything, feeling horrible.  That's when I really start to panic.

Been a few days, and my hearing in my right eat has gotten a bit better (at least it is when I wake up in the morning, it seems to degrade as the day goes by).  I'm not totally deaf now, but my hearing is very very impaired.  Currently I only can understand people if they are standing right next to my right ear (left ear is close to totally deaf now).  It looks as though my right ear is now also effected by the disease.

I'm waiting to get fitted with hearing aids to see if that will make things workable, but have to wait another week because my hearing is still in flux.  Also shifted to a Mormon diet of no caffeine, salt, alcohol, or sugar (all of those can make the effects of Ménière's attacks worst or cause you to retain water), to see if that can help.

Things might get a bit better, but if my other ear is something to go by, probably not much.  We are going to submit my case to UCSF and some others to see what they think they can do.  There are surgical options, but those all seem to be about stopping the vertigo effects, and don't seem to be able to fix hearing.  Meaning, most likely, my Saturday night out was the last time I ever got to hear the world as it really sounds, and will never enjoy that ever again.

I've been shifting in between moods of extreme soul crushing depression and happy zen calmness.  I'm somewhere in between right now.  Trying to remain hopeful, but it gets very difficult at times.  I've been at home alone trying to recover through this most of the week with nothing but my thoughts and felt like ranting, sorry.  2015 is starting off totally rad.

So yes, Fuck Ménière's Disease.  Anybody else know somebody with this condition (stats say there are about 600K Americans with some form of this)?  Share!  Maybe they found some tricks to help keep the symptoms down.  Or anybody else who has lost their hearing?  Sure sucks, what's the story?  Not sure what to expect out of this thread, I just felt the need to vent.  On a side note, I'm terribly disappointed with science.  There was a lot of cool shit I was promised for the future.  Its the year 2015, we've cracked the genome, and they still don't seem to know how to fix most hearing problems.  Get off your lazy ass science!

Staying positive, at least it happened in a cheap country.  I paid for everything 100% out of pocket (the way my insurance works is that I pay out of pocket, then send them the bills, then they repay me what ever amount they cover).  An ambulance trip, ER doctor check up, meds, and 8 hours in the ER with an IV and nurse supervision came to about $200.  So there's that.

"My great-grandfather did not travel across four thousand miles of the Atlantic Ocean to see this nation overrun by immigrants.  He did it because he killed a man back in Ireland. That's the rumor."
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Reply #1 on: January 08, 2015, 08:59:32 AM

I'm so sorry you're going through such a terrible thing.  It sounds dreadful.  I hope there's a solution for both the vertigo and the hearing loss. Science disappoints me all the time, too, but like you said... we've cracked the genome.  Who knows what might be around the corner?  You might get lucky!  Anyway, try not to be super depressed.  That just makes everything so much worse.   Let us know how it goes.   Heart

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Reply #2 on: January 08, 2015, 09:04:24 AM

That sounds really shitty Teleku, serious bad luck :(

I would strongly recommend talking to your doctor about the depression side of things. Hopefully they can refer you to support groups or counseling which can be very helpful for some people.

Hope things improve.

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HaemishM
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Reply #3 on: January 08, 2015, 09:31:58 AM

Man, fuck that disease. I'm sorry to hear that, brother.

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Reply #4 on: January 08, 2015, 09:35:05 AM

:(
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Reply #5 on: January 08, 2015, 09:39:36 AM

Crappy! I hadn't heard of this before, hope everything turns out OK for you!

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Reply #6 on: January 08, 2015, 10:07:13 AM

http://www.dailykos.com/story/2011/10/01/1021817/-I-m-From-the-US-Government-and-I-m-Here-to-Help-You

This is a story only related to yours in regards to the loss of hearing as an adult. Hopefully something will kick in to save your hearing levels in your right ear. The difficulties you have already encountered are horribly life altering. This blog above is written by my brother and he has posted a follow up blog as well. Trying to live with him wearing dual hearing aids that didn't really help much, him relying on lip reading to supplement what little he did hear, him trying to learn ASL, etc. showed me how much daily frustration and borderline anger as well as depression affected his life. Implants might be a huge huge benefit whenever you reach (or not hopefully) that point.

What an awful way to start a new year. :(
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Reply #7 on: January 08, 2015, 10:16:05 AM

I've suffered from BPPV and it seems to be a recurring thing.  Thankfully never as badly as the first bout.  It's bad enough without the hearing loss, so I'm sorry you've got to go through this.


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Reply #8 on: January 08, 2015, 10:18:19 AM

That's so bad, so frustratring how powerless we still are towards the forces of chaos  *sigh*

I am so sorry, friend. Wish there was anything I could do to make things better.

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Reply #9 on: January 08, 2015, 10:46:04 AM

That's horrible, Teleku. Hang in there.
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Reply #10 on: January 08, 2015, 12:08:47 PM

Was looking through old threads for reference and found this:
My life over the last decade has steadily gotten better and better, year after year.  I don't know what whats wrong with all of you.   why so serious?
See dude, it's just karma balancing itself out.  why so serious?

Seiously though, that's some awful shit. I get what you mean about the swingy moods; I would totally react the same way. Try to keep yourself on that middle ground; the detached place is nice to go to from time to time but it's hard to progress with your life while you're there. Talk/write a lot. Bug your friends, post here, whatever. Don't give a shit about sounding whiny or repetitive. Putting things into words gives you something concrete to reflect on later, helps you keep perspective, and can keep you from sliding into those extremes.

</internetadvicefromakid>
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Reply #11 on: January 08, 2015, 12:22:13 PM

When I feel depressed, I close my eyes and go to my happy place.  When I feel better, I open my eyes and my toes are always wet.  I don't know why.


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Reply #12 on: January 08, 2015, 02:21:47 PM

Damn, that sucks, Teleku.  Hope the doctors can figure out something to help the hearing in your right ear. I already go through the world almost blind with out my contacts, I can't imagine not being able to hear anything as well. :(

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Reply #13 on: January 08, 2015, 02:22:28 PM

Thanks for the support everybody, I really appreciate it.  I think I'm past the initial terrifying depression stage for now.  My hearing has improved somewhat since that first day, which put me on a positive frame of mind since that means the terribleness of that hearing loss maybe isn't permanent.  Taking everything in stride now, though I may have to look at anxiety medicine.  As you can imagine, its become very hard to get myself calm enough to fall asleep.  When this hit, I literally went 3 days straight with almost zero sleep because he was panicking so much.  Better now though.
Crappy! I hadn't heard of this before, hope everything turns out OK for you!
Neither had I.  Though I keep getting referenced by doctors all these famous people who had it, heh.  Did you know Alan Shepard had it?  He was grounded, got one of the surgeries I was thinking about before, and then he flew into space.  Though it sounds like he only had the vertigo part, not the hearing loss part.  Les Paul apparently also had it, though again I'm going to assume it didn't cause much hearing loss, heh.
http://www.dailykos.com/story/2011/10/01/1021817/-I-m-From-the-US-Government-and-I-m-Here-to-Help-You

This is a story only related to yours in regards to the loss of hearing as an adult. Hopefully something will kick in to save your hearing levels in your right ear. The difficulties you have already encountered are horribly life altering. This blog above is written by my brother and he has posted a follow up blog as well. Trying to live with him wearing dual hearing aids that didn't really help much, him relying on lip reading to supplement what little he did hear, him trying to learn ASL, etc. showed me how much daily frustration and borderline anger as well as depression affected his life. Implants might be a huge huge benefit whenever you reach (or not hopefully) that point.

What an awful way to start a new year. :(

Thanks for the link, that sounds terribly similar to my situation, though thankfully not quite as bad.  Sounds very rough though, sorry to hear he went through all that.  Still, nice to know there are options out there.  I am very fortunate in that this happened after I got the job I currently have.  The State Department is very friendly towards stuff like this, and they will work around it to help me and keep me working.  I'd have been totally fucked if I was working private sector still.
See dude, it's just karma balancing itself out.  why so serious?
Yeah, that thought has been crossing my mind.   why so serious?  Arriving here, I had pretty much just got myself to the most perfect point in life I could imagine.  Job I love, a career I can work at for 30 years then retire (never have to worry about job hunting again).  Great pay, insurance, and benefits.  I remember laying down one of the first nights and feeling for the first time in my life I literally had no fears or worries about my future, totally content, at peace.  Then all this shit promptly happened.

¯\_(ツ)_/¯


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Reply #14 on: January 08, 2015, 02:27:42 PM

Never ever say "My life couldn't get any better." You might as well have dropped a fruit basket on the universe's shoulder.  why so serious?

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Reply #15 on: January 08, 2015, 03:01:54 PM

Hey man really sucks to hear your news. As someone who has had hearing issues before I know how shity it can be, and your experience is far worse than mine (hearing loss in left hear would routinely throw my balance about making me dizzy and sick every couple of days, couldn't turn my head quickly, and fell down a couple of times).

Having doctors say "we don't know, ears are odd like that" is really frustrating. But on the positive mine did settle down eventually, to the point I don't really notice it anymore, and I hope that the same happens with you.
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Reply #16 on: January 08, 2015, 05:47:51 PM

I've had vertigo a few years back that was pretty severe minus the hearing loss.  Doctors suspected Ménière's but it hasn't reoccurred anywhere near like it did back then, so I've kind of forgotten about it in my day to day life.  It's still in the back of my mind when I'm just sitting there or walking and all of the sudden I get a very strong ringing in one ear that will be piercingly loud for 10-15s followed by the world going quiet for another 15-30s.  Same with any time I have balance issues or start to feel the world spin around ever so slightly.

My ex-wife's former boss had it and it didn't mess up her hearing too badly, but she would definitely have to take time off of work periodically for a day or two when an attack was coming on.  The quicker she caught it and slowed down everything, the less likely it was to be severe (if it started happening at work she would leave immediately).
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Reply #17 on: January 08, 2015, 06:30:24 PM

tl;dr I'm losing my hearing.
Hey man really sucks to hear your news.
I'm sorry to hear that, brother.
You guys are dicks. why so serious?

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Reply #18 on: January 08, 2015, 07:10:53 PM

Sorry to read about your troubles, super shitty.
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Reply #19 on: January 08, 2015, 08:35:25 PM

This blows, sorry.

How is this going to affect your medical clearance - are you still going to your onward as of now?

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Reply #20 on: January 09, 2015, 12:03:24 AM

Oh, wow - that sucks.  Hopefully there's something the docs can do for yas.

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Reply #21 on: January 09, 2015, 03:41:26 AM

I have slightly degraded hearing when I am in places with a lot of background noise, and it annoys the ever-loving shit out of me.  I cannot even imagine what you must be going through.  It may sound trite for me to say so when I am not in your shoes, but stay as social as you can.  I have seen enough old people (and I know you aren't old people) who have lost most of their hearing and they withdraw from most social occasions because they cannot deal with it.  Their quality of life quickly turns to total shit as a result. 

Anyway, best of luck.  Here's hoping somebody soon invents some kind of giant robot replacement ears.

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Reply #22 on: January 09, 2015, 03:59:03 AM

Best of luck. We have in Poland really good specialists - everything will be better.
Teleku
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Reply #23 on: January 09, 2015, 07:17:17 AM

Having doctors say "we don't know, ears are odd like that" is really frustrating. But on the positive mine did settle down eventually, to the point I don't really notice it anymore, and I hope that the same happens with you.
Yeah, thats been one of the most agrivating things about all this.  Almost all of the doctors I've talked to about this have all basically gone:  ¯\_(ツ)_/¯ ---(Take some pills)

I've had vertigo a few years back that was pretty severe minus the hearing loss.  Doctors suspected Ménière's but it hasn't reoccurred anywhere near like it did back then, so I've kind of forgotten about it in my day to day life.  It's still in the back of my mind when I'm just sitting there or walking and all of the sudden I get a very strong ringing in one ear that will be piercingly loud for 10-15s followed by the world going quiet for another 15-30s.  Same with any time I have balance issues or start to feel the world spin around ever so slightly.

My ex-wife's former boss had it and it didn't mess up her hearing too badly, but she would definitely have to take time off of work periodically for a day or two when an attack was coming on.  The quicker she caught it and slowed down everything, the less likely it was to be severe (if it started happening at work she would leave immediately).
Ha, yeah, that sounds exactly like me.  When ever I felt an attack starting I'd get the fuck out of work as fast as possible.  If I can get to a bed, lay down, and cover my face so I don't see any light, I could mostly ride through it without feeling anything at all (even though if I opened my eyes, I'd see the world was spinning around at high speeds).  If I got caught still moving when the vision started to spin, it aggravated it really badly.  So even when I laid down and covered my face, I could still feel the entire room spinning in circles.  Which meant I'd pretty much have to lean over and puke uncontrollably several times in the course of an hour or two.  Eventually it would settle down at some point, but it is literally the worst thing in the world.  Fuck water boarding, if the government really wanted to torture people, figure out a way to give them vertigo attacks.

Still, one of the annoying things about your description and others I've talked to is that most people don't seem to have the kind of hearing loss I'm getting with this.  I have all the other symptoms, but most people seem to lose hearing when the attack hits, then it returns to normal.  I had perfect hearing until my left ear blew out and never really went back to normal one day, with all the Ménière's symptoms coming with it.  Then my other ear just suddenly blows out.  On one hand it makes me kind of hope that means its something else, which can maybe be fixed.  On the other hand, it could be something else that’s actually worst.

This blows, sorry.

How is this going to affect your medical clearance - are you still going to your onward as of now?
No idea at this point.  Our embassy doctor has been out traveling to other embassies and won’t be back till Monday, so I'll know more information then.  But I imagine this is going to cost me my Class 1 Medical Clearance, which I suspect is going to make it difficult for me to travel on to Freetown.  Which is ironic, because the same day I went into the ER over this, my travel orders to go to Freetown finally came through.   Ohhhhh, I see.

But we’ll see what happens.
« Last Edit: January 09, 2015, 08:25:17 AM by Teleku »

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calapine
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Reply #24 on: January 09, 2015, 08:06:18 AM

Crap.  sad I hope that whatever this is is, it's as benign as possible.

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HaemishM
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Reply #25 on: January 09, 2015, 09:07:43 AM

tl;dr I'm losing my hearing.
Hey man really sucks to hear your news.
I'm sorry to hear that, brother.
You guys are dicks. why so serious?

While that is quite undeniably true, my comment was not meant to be an intentional shot at his hearing loss.

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Reply #26 on: January 09, 2015, 09:29:03 AM

Its ok, I LoL'd.

"My great-grandfather did not travel across four thousand miles of the Atlantic Ocean to see this nation overrun by immigrants.  He did it because he killed a man back in Ireland. That's the rumor."
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HaemishM
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Reply #27 on: January 09, 2015, 10:55:14 AM

Are you sure it was out loud?  why so serious?

I know, I know, I'm a very very bad person.

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Reply #28 on: January 09, 2015, 06:35:25 PM

Still, one of the annoying things about your description and others I've talked to is that most people don't seem to have the kind of hearing loss I'm getting with this.  I have all the other symptoms, but most people seem to lose hearing when the attack hits, then it returns to normal.  I had perfect hearing until my left ear blew out and never really went back to normal one day, with all the Ménière's symptoms coming with it.  Then my other ear just suddenly blows out.  On one hand it makes me kind of hope that means its something else, which can maybe be fixed.  On the other hand, it could be something else that’s actually worst.
College friend of mine's wife actually had an auto-immune disease that mimicked a lot of the symptoms you are describing.  Turns out hers was something that caused her body to destroy all of its cartilage, which the hearing canals and nerves were contained with and were the first symptoms - hearing was just instantly gone one day.  It was a pretty horrifying few years for her.
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Reply #29 on: January 09, 2015, 08:31:52 PM

Still, one of the annoying things about your description and others I've talked to is that most people don't seem to have the kind of hearing loss I'm getting with this.  I have all the other symptoms, but most people seem to lose hearing when the attack hits, then it returns to normal.  I had perfect hearing until my left ear blew out and never really went back to normal one day, with all the Ménière's symptoms coming with it.  Then my other ear just suddenly blows out.  On one hand it makes me kind of hope that means its something else, which can maybe be fixed.  On the other hand, it could be something else that’s actually worst.
College friend of mine's wife actually had an auto-immune disease that mimicked a lot of the symptoms you are describing.  Turns out hers was something that caused her body to destroy all of its cartilage, which the hearing canals and nerves were contained with and were the first symptoms - hearing was just instantly gone one day.  It was a pretty horrifying few years for her.

What happened?  Is she okay now?

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Reply #30 on: January 09, 2015, 10:34:00 PM

What happened?  Is she okay now?
She was having surgery to restore some of her cartilage & ended up going into cardiac arrest on the table in the middle of it & died.  It was an extremely tragic situation & my friend still hasn't ever gotten over it to the best of my knowledge.
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Reply #31 on: January 09, 2015, 11:37:32 PM

Shit, mate. Sorry that this has happened to you. Hopefully it gets better this time.  undecided

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Reply #32 on: January 10, 2015, 03:26:11 AM

What happened?  Is she okay now?
She was having surgery to restore some of her cartilage & ended up going into cardiac arrest on the table in the middle of it & died.  It was an extremely tragic situation & my friend still hasn't ever gotten over it to the best of my knowledge.
You're not helping my anxiety very much.   why so serious?

But fucking hell, that's terrible.

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Reply #33 on: January 10, 2015, 04:31:55 AM

You're not helping my anxiety very much.   why so serious?

But fucking hell, that's terrible.

*hugs*  Heart I wanted to tell you "At least it's not cancer" before, but this might have come across the wrong way.

Reading up on it on the web the descriptions mention that development is highly individual, including 'symptoms disappearing even after 5 years'. So don't assume that the worst case is exactly what's going to happen to you.

And like apocrypha said, see someone for the depression. I read three articles about it now and all of them say there is a need for 'psychosocial support' due to the strain caused by 'sudden and unexpected attacks'. So if you are feeling anxious now you seem to be a perfectly normal patient.  Grin
« Last Edit: January 10, 2015, 04:37:42 AM by calapine »

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Reply #34 on: January 10, 2015, 08:05:47 AM

Try taking some B-vitamins and magnesium supplement. This will help with the anxiety and stress. They are natural relaxation aids.

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