Labrynthitis.. will I get better?

Paula, I agree with your advice 

Im sure it will get better, the body can heal itself, its just how long it takes.

I think the head shaking, and eye fluctuations were  the worst. That along with Anxiety attacks make it impossible. I have seen a Counsellor about this. (which helped a lot)

Staying Positive and viewing life differently is essential.

Good luck 

 

Hello Wen,  Ben here.

Wow, you have been "through-the-mill", as they say.   I applaud you. My situation seems far simpler by comparison.  I am humbled by your perseverance and initiative to add to this forum.  Thank you for contributing, I am sure that you have a lot of excellent information to share. 

I was diagnosed with MD at first.  I cut out Caffeine, Sugar, Salt, took Lippoflavinoid and went to Physical Therapy for 6 weeks, until I exhausted their entire repertoire' of activities.  When I didn't seem to make progress toward recovery, I asked for a 2nd opinion and this time was diagnosed with Vestibular Neuritis. Going on 17 months now.

 

This whole area, the inner ear,  is a rather "spooky" area.   Where I live there isn't much known about inner ear problems.  After reading your experience, I consider you to be quite an authority on Meniere's Disease, so if you wouldn't mind, please, I would like to ask you to explain what Meniere's Disease is in plain words.  Please try to contrast it to Labs and VN if you would. I understand exactly what you mean when you say Labyrinthitis and MD have very similar symptoms. From a non-professional viewpoint, they are indistinguishable from each other and I would really like you to do some "flushing out" of the differences if you would, not just for my own curiosity, but for anyone else who may have symptoms that they are not completely satisfied are correct for their diagnosis.

Living in the U.S.A. I have reservations about our health care professionals.  They seem to keep a distance between themselves and their patients.  It doesn't always feel like they really want to get to know you.  That distance sometimes makes me feel suspicious of their work ethic.  Sometimes it seems like they're just out to "make-a-buck". Like even if they are wrong they won't admit it.  If they get caught it might lead to malpractice, and their insurance rate will go up and cut into their profit.   So at the expense of the patient they just let you go and if you feel bad enough maybe you will seek another opinion.  That has been my experience with what ever it is I have right now.  That is why I keep coming back to this forum, I am still not sure.

 

Thank you again for posting your comments, I hope you will continue to contribute and I wish you well. 

Ben

 

Hi Ben,

Reading all these posts, you wouldn't believe that such a small thing like the inner ear could cause so much trouble. It definately has a design fault!

The main Classic Meniere's symptoms are - Vertigo (severe dizziness) and Inbalance,

Tinnitus, and hearing loss.

My hearing loss wasn't noticed until 18 months after the vertigo had started - basically, it can be missed as it seems to be mid-range sounds that go first, you still hear bird song and high pitched screaming kids ! and my other ear was fine then so it was missed at first.

My MD symptoms were absolutely unmistakable, text book diagnoses, no doubt at all

I too cut out all the possible things that seemed to be suspect for making it worse - salt (I even made my own bread with no salt - so I had to catch it right before the rise collapsed and stopped eating anything with salt added to it, which is 99% of food sold) - caffeine, citrus fruit, sugar  etc

After 2 years or so it was clear that nothing I did made a jot of difference. The only thing to stop me vomiting was to lay still as soon as an attack came on - even on the floor sometimes as they came on with no warning - and to try to get a prochlorperazine / stemetil anti sickness pill down as quick as possible or put a buccastem pill (same drug) under my top lip.

My boss had kept my job open for a year and as I knew about MD (dad was so ill with it too) I knew I wouldn't get back to work - a job I loved, working in an Ordnance Survey Map shop. (loved retail work, I loved meeting people - that's probably why I'm on here so much, the contact with people helps)

The day when I wrote the boss a letter to say that I wouldn't get back was the lowest I've ever been. 

Friends didn't understand, that's why I am so glad to have met my soulmate who has the same MD as we look after each other and understand  (it hasn't happened yet  - I hope we don't have vertigo attacks at the same time!)

Anyway, the only differences with MD and labyrinthitis are that labyrinthitis is usually (not always) a temporary illness, probably got from an infection etc and has hearing loss from the higher frequency range of sounds.

Extra symptoms that I get are - hyperacusis, nystagmus and being very wobbly (due to surgery) - the retraining didn't work as I had other illnesses to cope with at the time and left it too late to do the exercises to make any difference - I still do them, I live in hope.

The MD Society has members all over the world, it may be worth joining as it's helpful not just for MD sufferers, They have information for all vestibular diseases.

Vestibular Neuritis is usually gotton by a viral infection - again it seems to vary, some suffers have trouble with concentration, but It can be said for all of these problems, they all differ how they affect each of us anyway - my dad's spins were different to mine and my partners are different too

 

I have to say that I think the USA is very advanced in medicine. Like any field, doctors are not all angels. I had vestibular neuritis or labrynthian benign ppv 5 years ago. I went to the top top top ear man in NY. And he gave me many tests and never got back to me with any results. I had to call him!  Having sent for those results, I see he wrote that my case might relapse. And it did; I've had it 6 weeks. I will not go back to him; I kept searching for a excellent ear man whom I'm waiting a month to see. A friend said she went to many who didn't help her, and that he was nice, gentle, and helpful. I'm afraid this kind of doc is a dying breed. But whenever I need one, I end up going through some bad ones till I find a good one. So far, in all areas, I've been able to do that. Insurance pays for second opinions, and I've heard, even third. We have to be so proactive that it's tiring. But we have to fight for ourselves.

Hi, Ben here,

I would like to give a follow up on my condition to those of you who have asked about my current condition.  About  7 months ago I was seen by a medical group at my local University for a 2nd opinion.  I went from a diagnosis of Meniere's Disease to Vestibular Neuritis.  The difference they said is, mostly that VN is damage left over from a virus or bacterial attack, where MD is a swelling of the whole Labyrinth due to the liquid not being able to move through.  MD causes a backup of the fluid as if it cannot drain either from a thickening of the fluid or a swelling of the membrane and drain tubes causing pressure to build up.  Cause seems to be speculative, but they have listed salt, asprin, smoking and alcohol. 

4 months ago had initial visit with the physical therapist.  I was given exercises to do at home.  They were tailored to me at my particular stage in the recovery process. Lately and I have posted from memory, what those exercises are.  I am recovering pretty well now at 16 months from onset.  I still do a limited number of those exercises, sort of like a excerpt of the original list, as I am gaining ground.  For those of you who have asked, I give this list of original exercises given to me by the professionals at the University of Michigan School of Medicine Hospital.  Beware danger of falling.

Start slowly at first, then faster as you progress.  Start with the Eye movements then progress to the Body and then to the Moving. Do these exercises for about 3 minutes 5 times per day.

For eye movements:

Look up and down

Look side to side

Look close then far

Focus on one finger moving it from 3 feet away to 1 foot away from face, turn head side to side and up and down, do not move head, just eyes

Useing a 3"X 5" white file card draw a black 1" tall letter and tape it to a wall 5 feet away, hold a 1/2" letter in one hand

Look at the letter on the wall then at the one in your hand while turning head left and right, up and down - KEEP IN FOCUS

Look at the letters, move held letter closer and then back from your head while turning left right up and down

Slowly at first then faster as you progress 

Body movements:

Bend forward and backward, then side to side

Shrug shoulders and  circle them while looking at something stationary, First sitting, then Standing.

Bend forward and pick up something from the floor in front

Rise from sitting to standing eyes open then shut

Going from sitting to standing add a complete turn around befor sitting again

Hand eye:

Juggle a small ball left and right from hand to hand, first up high looking up, then lower to look down somewhat

Bounce a basketball off a wall and catch it

Bounce a small ball and catch it

Bounce a ball and walk at the same time

Bounce a ball and walk and turn around at the same time 

Standing:

Stand on both feet held close together, eyes open, eyes shut. Do for trial of a few seconds, try to progress to 1 minute after time

Stand on one foot, balance eyes open, then shut, time same as above

Walking:

Walk in a figure 8 around something like a pylon looking down at first then look up

Walk in a straight line, like in a hallway, but do not use the walls for support

Walk with eyes open and then closed outside ( not in a building)

Focus on something in the next exercises:

Walk looking down right in front then look far away in front, then back to down right in front, then up and again back down

Walk looking far away to each side and back to close in front

Walk up and down a small hill with eyes open and then closed

Walk up and down steps with eyes open and then closed, eventually try not to use the handrail

This is a rather exhausting list, it is for that reason that the professionals tailor it to your individual level.  I have done all of them and now I am balancing on a board that has a ball attached to it. I still have to use handrails to keep from falling over, so I'm not out of the woods yet. But these did help me, proof is that at first I could't even do them, but as time went on, I kept at them and now I can do them all just not as naturally as I once did.  

Also, I found that I became very fatigued at first.  So I positioned a chair where I could sit and let things settle or rest for a few minutes between exercises.  In the very beginning of my program I would only do about 1/4 of them and I would become so fatiqued that I would go and lie down, and in just a few minutes ( like 2or 3) I would fall asleep.  These were very taxing to do for me, so I would ask anyone who is self doctoring to please be cautious and careful of the danger of falling.  

Good Luck and Good Exercising

Ben

24APR15

Hi Struth, 

Did you fully recover ? What were your symptoms? I’m currently on week 10 

HI Ben, yes I did recover......it was a long process though as after 8 weeks of feeling like I had a hangover (nauseous and dizzy continuously) I then had to fight the anxiety it gave me!! The only thing I can say is try to stay stronger than it and it will eventually pass, I won’t lie I felt broken! In the end I was having acupuncture which I think helped a little. Stay strong and become the storm .

Hi, 

That’s great news I felt about 90% and today I felt little off ( setback) it’s not as bad is week.

Did you have good days and then some bad days whem recovering ?