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  • Inner ear virus or mal de debarquement....

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    Old 05-14-2014, 08:42 AM   #1
    Maxwell21
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    Inner ear virus or mal de debarquement....

    Hi all,

    I have posted before and shared my story, it has now been a 14 months or ever evolving symptoms and no real firm diagnosis.

    To recap:

    Whole life Healthy until...

    March 18th returned from 3 day cruise which required round trip flight Boston to Miami (3.5 hours)
    **** I have traveled my whole life, just 5 months prior to this vacation I flew to Europe (8+ hour flight) and then went on a 12 day cruise...no ill effects felt, except a severe respiratory infection (chest cold). Which resolved once home and on medication.

    On the flight home I took anti anxiety medication as I always do however this time I took a half a tab during the flight as well as prior to take off ( usually only take at take off).

    Felt very tire and fatigued once off the plane, went home took a 45 minute nap and once I awoke I had a feeling as if I was still on the boat for the rest of the evening.

    Next 17 days the boat feeling went away and never returned I have a disconnected feeling like my head was not attached to the rest of my body, foggy brain, hazy vision, black floaters, 1 severe headache, slight sensation of water or something in left ear and periods of dizziness (spells) sometimes they just felt like my brain did a "belly flop" not sure how else to explain it other times I would see someone and they would be moving (like if you were really drunk). This probably happened under 20 times throughout the 2 weeks... the disconnect, foggy brain and hazy vision, etc. were with me constantly.

    Day 17-21 the fog lifted, vision cleared, and all the other constant symptoms dissipated at the same time my ears started to pop constantly can't recall any pressure just popping, this last 4 days and then I was 90% better.

    At this point ENT stated I have a inner ear virus- vestibular nueritis
    *** tested hearing- normal
    States ear exam normal- no fluid



    April 24th I had another vacation planned to go to PR and a 7 day cruise this required a 4 hour round trip flight.

    Arrived in PR feeling a little off but attributed to being nervous (as I was afraid I had mal de debarquement). I should also mention that I did take 0.5 of ativan prior to the flight. That same morning we had to take a 1.5 hour ferry ride to final destination, took another Ativan. No worse for ware after ferry ride still just felt off (nerves, ativan, unstable vestibular nerve from inner ear virus or mdds?). We spent 4 days and I felt this way the whole time. On the return ferry ride (1.5 hours) the ride was very rough and I for some reason chose not to take Ativan. When we docked I felt ok (still a bit off), once in the cab I became very nauseous this nausea stayed with me for 4 days. The next day I also started having just the "brain belly flops" (happened 3 times in 4 days) causing me to side step, no foggy head, no vision issues. Also noticed is I was sitting with feet not reaching the ground I could feel a slight rocking/swaying motion (lasted 2 days and very mild)

    Once on the cruise ship nausea remain and only at one Island did I experience the "Brain belly flop" which made me side step. I did however on the first port feel a slight rocking sensation but again only when sitting in a chair where my feet didn't touch the ground.

    So 7 days into the trip the dizziness, general crappy feeling subsided and my ears started to pop constantly (I thought oh good this is ending). Once off the ship I felt very anxious and was looking for signs of Mdds and therefore believe I felt like off balance, etc. I took Ativan and felt much better. On the flight home I took another Ativan and used earplanes (ear plugs). When I got home I felt fine except for my ears were popping and I felt fatiqued.


    From the end of April to middle of September I suffered with what was diagnosed with Eustachian tube dysfunction. Symptoms were severe pressure in my ears, need to pop constantly was able to pop using valsalva, with no relief the feeling of pressure started almost immediately after popping. Also had post nasal drip, fatique and hoarse voice and inflamed and red sinus/turbines. No allergy medication made any difference.

    Had MRI - Normal

    Went to Nuerootologist and he barely looked at me hear the first part of the story about the boat sensation and stated I had MDds.


    From September to January I felt about 85% ears were healing, fatique was still there but better.

    January 24th I was at work and went to stretch my neck by rolling my head on my shoulders, this caused a "brain belly flop" for the next 10 day I was hot and cold and found that movement of my head was causing the drop feeling (not every head movement just random). I also had that feeling of just not being right (can not explain) constantly. I went to ENT and was feeling a bit better as soon as I stepped into office I got extremely uncomfortable (like a dizzy foggy sensation), maybe from carpet and lights. Could not walk a straight line heal to toe.

    ENT said that it was a virus
    Hearing test done and normal
    Dix halpike (spelling ?) was negative



    Why am I writing...well I am completely frozen in fear.

    My whole life revolve around travel, some have children, some like fashion, and I love to travel.

    I have not dared to go anywhere and am becoming increasingly filled with anxiety and depression. I feel as this illness has take my care free spirit from me and I want it back.

    I have seen a psychologist and all he could provide me with was the options of medication, I feel I need a definitive answer as to what happened to me not medication.

    At present I am symptom free minus a few blips here and there, and some lightheaded feelings which I am question coming from severe anxiety of the thought o never being able to travel again.

    Thank you for reading and hopefully someone will be able to share some insight with me.

     
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    Old 05-17-2014, 10:55 AM   #2
    Maxwell21
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    Re: Inner ear virus or mal de debarquement....

    nobody???

     
    Old 07-02-2014, 10:09 AM   #3
    Sonja1975
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    Re: Inner ear virus or mal de debarquement....

    Hello Maxwell, it's been a while since i have been on this board. I have eustachian tube dysfunction (a blocked eustachian tube - not working good). It started for me in nov 2013 while i was on vacation in NYC. I developed a cold and flew back to my country. No problem in the beginning, but after 5 days severe pain in my right ear. I have been to 3 ENTS. Have had a tympanogram and CT scan. All clear. It's been 7 months now for me with this condition. I am not the same person i was before all of this. My energy level is way low. I have experienced severe right earpain, which is minor now. Three months ago one of the ENTS opted to put in an ear tube. In my opion it has not relieved the pain completely. The ear tube is still in my ear and will fall out on it's own in 6 months to a year time. A month ago i had an inhalation allergy test which came out positive. I am on flixonase steroid spray (7 months now).
    What i am experiencing now is some minor pain on the right side of my face (near my ear), crackeling and popping of the ear when i swallow and sometimes crackeling when i open my mouth.
    There is a surgery they do to open up the eustachian tube. It's called tube dilation. I want to go for this surgery. Hopefully it will get my eustachian tube working again. Cause it is very irritating this blocked feeling.
    How are you doing now?

     
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    dizzy lightheaded nausea fatigue tired, eustachian tube dysfunction, mal de debarquement, vestibular neuritis



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