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Labyrinthitis (The inner ear conundrum)

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Old 10-27-2011, 07:16 PM   #1
Join Date: Oct 2011
Location: Chicago, IL
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stefanrunstrom HB Userstefanrunstrom HB User
Labyrinthitis (The inner ear conundrum)

Labyrinthitis is an aptly named disorder. It's sufferers (myself included) must seek to find their way out of a maze, a labyrinth if you will, of misdiagnoses, and often hard-to-articulate symptoms, suffering all the while.

Here's is a list of all of the things I thought I had initially (Or was told I have by a physician (marked by a *)). In chronological order: Food poisoning, allergies, *dehydration, migraine, wheat intolerance, *generalized anxiety disorder, brain tumor, ms, *viral inner ear infection. I'm a bit of a hypochondriac. I know NOW that I have an inner ear disorder. And, that disorder has adversely affected my life for the past three months.

It started off with an unusual dizziness. (dizziness is so subjective, and if you're like me and scour every message board, chances are some descriptions fit yours and some don't.) My dizziness was utterly annoying at first, sometimes sickening. It came and went and was exacerbated by alcohol and caffeine. I had trouble explaining to people what I felt. I was removed from reality. I wasn't falling all over the floor, but I wasn't seeing straight either. The best word I found to describe it is "derealization". I was off. Not 100%. I had trouble focusing on things. And since the symptoms were come-and-go at first, I think people thought I was full of sh*t. I finally decided to take a day off and rest. That one day turned into seven days of being in bed. It was horrible. I was tired, subtly nauseous, and disoriented... I should also mention that I had ringing and popping in my ears, along with fullness and sometimes stabbing pain in my left ear.

I finally saw an ENT doctor. I took a hearing test and it came back perfect. The doctor then proceeded to lay me back and move my head in different directions to provoke a dizzy spell. It didn't really provoke anything as I was dizzy before I came in. In fact, I was dizzy that whole week. Nothing made it worse or better. He came to the conclusion that I was suffering from the fallout effects of an inner ear virus (probably). AKA, he was making an educated guess. So with that diagnosis I was given prednisone, valium and told to drink plenty of fluids and get lots of rest. I decided to opt out of the prednisone because of the side effects. Prednisone seemed about as subtle as a nuke. Instead I took the valium and went to bed...

The next day I felt grrrreat. I was on the upswing, and I couldn't have been happier. Suck it inner ear! All because of the valium? Whatever, at least life was back on track. I could drink a beer, have coffee and be normal again, who cares.

Then, a couple weeks later, something weird happened... My first panic attack (ever), and then another one. And then another one. All this anxiety seemingly came out of nowhere. It was ruining my life. I had to leave a friends wedding because of it. I used the valium (and sometimes whiskey (I know you're not supposed to use alcohol)) to tame the symptoms, but they were hard to eliminate. I couldn't understand what was going on. Apparently it is normal to have anxiety post inner ear disorder. Still, it was a very discomforting feeling...

Finally, the anxiety seemed to subside and life appeared to be back on track again. Two months after the initial symptoms, I figured the disorder had run its course.


Round three... Or rather, the past three weeks.

It had been three months since my initial symptoms and I was once again in the throes of labyrinthitis. Headaches, dizziness the feeling like I was in a video game. ALL OF IT. It was really quite discouraging. I was a little jaded this time around, pretending like nothing was wrong, even though it was. I went to another different ENT doc and after another hearing test, dizzy test and ear inspection, he came to the same conclusion: My inner ear had been badly damaged from a virus and it needed time to compensate. The cure? TIME. I hate it when doctors say that. I was prescribed valium, and told that I couldn't drink any alcohol for 2 months. And that I should abstain from caffeine and dairy. What a buzz kill. (p.s. I'm 24).

In conclusion, I've decided to kick this things *** holistically and it seems to be having some effect. I've eliminated processed foods completely from my diet. 1-2 meals a day are entirely raw (i.e. a giant salad). I've been eating a lot of fresh caught salmon (Omega-3's are supposed to do wonders). I've been taking Ginkgo Biloba on the regular, and drinking massive amounts of water. Low salt, very little sugar. My body certainly seems to be reacting well to all of this. I'm not cured, but I feel better than I did. I also tried acupuncture for the first time. I felt that it had little effect on my symptoms. I know a lot of people have had luck with this, but I felt like my $85 could've been better spent elsewhere. I also got a $120 hour-long deep tissue massage that actually seemed to exacerbate my symptoms. Again, just my experience.

I feel the dietary changes and ginkgo supplements have worked the best for me so far. I'm trying to keep a positive attitude and power through this, hopefully for the last time.

If you can empathize with any of the above, then hit me up and share. I've certainly found solace in the writings of others here and figured it was my turn to contribute.

I will keep everyone posted on my condition.

The Following 4 Users Say Thank You to stefanrunstrom For This Useful Post:
Bisform (03-27-2012),fuzzyhead (08-21-2012),IdyllicLife (11-01-2011),lovineachday (11-06-2011)
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Old 10-30-2011, 10:14 PM   #2
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Re: Labyrinthitis (The inner ear conundrum)

Labyrinthitis is a trash bin diagnosis. From my unprofessional estimation, I would have to say that there are a few conditions that are a lot more common than labyrinthitis. Most doctors dont know much about balance problems, so the person you want to see is an Otologist or Neurotologist.

Old 11-06-2011, 10:01 AM   #3
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lovineachday HB Userlovineachday HB Userlovineachday HB Userlovineachday HB User
Re: Labyrinthitis (The inner ear conundrum)


I try to keep moving. In the long run, I feel better than sitting around too much. I guess doing everything you can do to help your brain compensate could speed up the process of compensation? In the spring I started exercising (fitness classness), determined to feel better. It DEFINITELY made me feel better... so many normal days. Time for me to get back on the fitness train.

Healing to you, and to all on this board.

Old 12-16-2011, 08:19 PM   #4
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MR11287 HB User
Re: Labyrinthitis (The inner ear conundrum)

I was diagnosed with Labrynthitis 10 weeks ago. Just like many, mine began with severe vertigo which led to a panic attack. I went to the ER and had a CT and MRI of my brain, along with a spinal tap. Once everything came back negative they advised me to see an ENT. That is where I was diagnosed with Labs.

It has been the worst thing I've ever dealt with in my lifetime, by far. I started going to Physical Therapy 3 weeks ago because I was told that medicine can only mask the symptoms, and that the brain needs to be retrained to compensate for the damage done by the virus. This has helped me greatly, and I would strongly advise everyone with labs to go to a PT that specializes in balance treatment.

About a week ago I went to my primary physician and he told me that I should take Prozac to help me relax because he felt that would help me get better faster. He said that the vertigo/dizzy spells increase my anxiety, and increased anxiety makes the vertigo/dizzy spells worse. Both he and my PT agreed that it would be wise of me to take the Prozac.

This all made sense to me so I decided to start the Prozac. Well, after about a week I am done with the Prozac! It brought back all of the vertigo/dizziness that I had at the onset. Sure the anxiety might be improving, but it is not worth the setback of all the time I've spent at PT retraining my brain.

I told my ENT about the Prozac, and he told me that i absolutely need to discontinue using it. He explained that it will throw off my balance even more, and make it more difficult for the brain to compensate. Why the hell would the other 2 doctors prescribe this to me when the ENT feels it is a terrible idea??

Every time I feel like I'm doing better, I seem to go down the wrong path and BOOM! Labs is back and in full effect again! I am done with the medications. I have Xanax and Meclizine for times when I absolutely need it, but I had such a horrible experience with the Prozac that I am now done with any new suggestions from my doctors. I will continue the PT and do the exercises as I am instructed. I believe eating a healthy diet, staying hydrated, and being physically active far exceed what the medications have done for me.

Have any of you tried any specific medications and gone through what I have? Or have any of you heard any specific information on whether to take or to completely avoid medicines like Prozac or Zoloft for Labrynthitis. I wanted to believe that medication could be a quick fix, but I am happy I brought this to my ENT's attention.



Old 12-16-2011, 08:27 PM   #5
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MR11287 HB User
Re: Labyrinthitis (The inner ear conundrum)

I have had labrynthitis for 10 weeks now. My vertigo/dizziness has improved since I began physical therapy 3 weeks ago. The part that has been really difficult for me has been the anxiety associated with it. My physical therapist and primary decided that I should take Prozac. I have taken it for the past 3 days and the dizziness and vertigo is back as bad as ever.

My ENT told me that I should not be taking any AD's because they will make my balance worse. I brought that to my GP and PT and they both said that is not true. I really want to take it if it will help with my anxiety, but it is not worth it if it is going to set me back from all of my hard work at physical therapy.

I just really want to know if anyone else has taken anything like Zoloft or Prozac to help with their labrynthitis, or if it is just better to avoid medications and just continue with physical therapy.

Old 08-17-2012, 05:55 PM   #6
Join Date: Aug 2012
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fuzzyhead HB User
Re: Labyrinthitis (The inner ear conundrum)

Stefanrunstrom: Any update on your condition? I have been experiencing similar symptoms for 8 weeks now...all started after a cruise.

Not vertigo, but a disoriented, "head in the clouds" type feeling. Difficulty focusing, especially in busy environments such as supermarkets. Even cognitive difficulties with short term memory. Been diagnosed with labyrinthitis by a GP - put on Serc (UK med) with no improvement. Yet to see any specialists, but I've done tons of on-line research and feel discouraged about the number of people who report similar symptoms with no concrete findings.

Last edited by fuzzyhead; 08-17-2012 at 06:03 PM.

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