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Old 12-04-2012, 09:44 PM   #1
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fatmommacat HB Userfatmommacat HB User
story of vertigo/vestibular neuritis

I got violently ill at work.everything was spinning and had severe nausea. sent to the ER. After a day in the ER with tests showing NO STROKE, I was sent home. I could not walk. I could not see well. Moving made me nauseous. For the first week and a half I couldnt walk alone. I had no balance. I couldnt watch TV. My glasses made things worse.I had terrible brain fog. I couldnt use the computer because it hurt my eyes.
My Dr hoped it was allergy related and gave me antibiotics. 3 weeks later I was still not balanced, no driving, TV was ok from a distance and I could use the computer some.I could go to the store with help and only if I pushed the cart for balance. Since I had little improvement, my DR ordered a MRI which read fine. I was sent to a Neurologist who had my hearing checked and gave me valium (which helped)
The ear DR ran tests. VESTIBULAR NEURITIS and OSCILLOPSIA (shopping cart syndrome) I had an inner ear infection that totally killed out my left labyrinth part of my ear. It will never heal. She said it was remarkable that I was able to do as much as I could with the damage that was done in my ear. (no I never felt sick and my hearing is fine) My right ear is working double duty, thus the balance issues.
Currently Im 2 months into all of this. I feel good! I still cant drive because I can not look behind me with out getting sick.
I cant walk fwd and turn my head side to side and my vision is still a little blurry.
I loose balance if I have to reach high or bend/squat down. Everything is worse in the dark. I can get around the house with no problems. I have not had dizziness or nausea until I was decorating the christmas tree I guess that circular movement was too much because it got to me and I felt sick.

I have to have VESTIBULAR REHAB. This will retrain my brain to not over compensate.
After my first PT session I was given exercises.

The therapist says If i really do my homework (exercises) I should see improvement in a month. And I must go off the Valium. Being on drugs will inhibit my physical therapy.

Im posting all of this because i have looked for a forum with issues like this to see other ppl's stories and I
really cant find much.
I hope my story and details might help someone else... on the flip side if anyone else has been thru this I would like to hear how you are coping.

 
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Old 12-26-2012, 05:54 PM   #2
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Re: story of vertigo/vestibular neuritis

Hi fatmommacat, my name is John and i've been suffering from VN for 11 months. I too am new to the forum and it is so comforting to know that I am not alone. Mine started after a bout with the flu last year. I woke up one day and BAM, it hit me like a brick. I could hardly make it to the bathroom. I was sooo foggy headed and woozy that it made it difficult to focus at all. I just assumed it was related to the flu, but it never went away. I've been to Internists, ENT'S, and Neurologists. I've had MRI's, VNG,s, massive amounts of blood work, and other tests. The VNG showed damage to my right vestibular nerve. It has been a long road, but my progress is continuing. I tried the drug route, but to no avail it ended up making me worse. I could not tolerate neurontin or SSRI's, but I did get some relief from Ativan. I was just not comfortable going that route. The VRT has been extremely beneficial, but the hardest part are the atypical migraines that come along with the compensation associated with the exercises. I have just been fighting through it. Just know that it is a long process, but you will get better. Hang in there. I wish that some of the posters who were on here a few years ago would come back and let us know how they are progressing...

 
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Old 12-26-2012, 06:02 PM   #3
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Re: story of vertigo/vestibular neuritis

Thank you for sharing. I hope that your therapy goes well. I also suffer from vertigo/dizziness but not as badly. I compensate by walking with my head down and focus about three feet in front of me. I have gotten used to use my peripheral vision so I don't run into anything. The weird thing is that I can drive perfectly (vision-wise) and am able to look straight forward without getting dizzy.

 
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Old 12-26-2012, 06:08 PM   #4
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Re: story of vertigo/vestibular neuritis

Hi Seekingpeace...I too have been able to drive, work and be relatively active; however, the minute I deviate from my VRT, I begin to slide in the wrong direction...Have you been diagnosed with VN???

 
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Old 12-26-2012, 07:07 PM   #5
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Re: story of vertigo/vestibular neuritis

Eleven months? (ugh) my rehab has helped. I struggle with vision problems trying to focus.
When i walk i feel like my head is "floaty" inside.
It's very annoying. Ive been off work since October.
Im afraid to go back. I don't want to loose my balance and get hurt.
I am able to turn my head from side to side slowly now while walking.
I was in a dept store over the holiday that was very crowded.
I was an emotional wreck because i couldn't maneuver in the tight places
With out bumping into ppl or things. The escalator was terrible.
Even walking on the side walk i was afraid i was going to
Fall off of it. It was all so frustrating.

Thanks for your input. I really appreciate it.
Sometimes this is enough to really get a person down.

Last edited by moderator2; 12-26-2012 at 07:17 PM. Reason: posted disallowed website

 
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Old 12-26-2012, 08:13 PM   #6
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Re: story of vertigo/vestibular neuritis

momm, continue your VT exercises as much as possible...it will change your life....you will tolerate being in crowds much better....are you drinking caffeinated beverages?? i found that they make the migraines 10 x's worse.....hang in there and remember, you will get better!!!

Last edited by js693; 12-26-2012 at 08:16 PM.

 
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Old 01-05-2013, 03:15 PM   #7
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Re: story of vertigo/vestibular neuritis

fatmommacat, I had almost the same thing happen to me about 4 years back. I had fallen asleep on the couch and was woken up with horrible hissing in my ears and couldn't move because I was sooo dizzy. My husband called "ask a nurse" and they had me do different kinds of tests over the phone because we were having a blizzard. They were making sure I wasn't having a stroke. It took a long time, several doctors and we made a trip to Tennessee to an ear clinic that helped me. I was dx with VN. When we came home I had rehab 3 times a week for 6 months, then it was 1-2 times a week for the next 4 months.

I agree rehab will change your life. It takes awhile for your brain to compensate for the loss of the other balance in your ear, but it will happen! Always use a cart when grocery shopping as for some reason the fluorcent lights mess with my balance and I was told that they do that to most people who have VN for quite a while. I couldn't drive for almost a year after. When I'm in a shopping mall or a place where there are alot of people, if I have to use an escalator, (if it's not to high) I pretend I've dumped my purse or droped something. That way I can almost sit on the step and hold on to the railing and no one knows the difference. I've also gone and walked outside to the other side of the building to get to the 2nd level or top level. Usually when my head feels "floaty" inside, there is a thing called either derealization or depersonalization. It's just the body and brain reacting to the anxiety your going through. I stil have that happen to me.

I can now use an elevator by myself, but it's still scary. If I have to go up alot of floors, I'll usually look to see where the stair case is and use the stairs. Heights are still hard for me, but I am sooooo much better that I was. Most people recover to 95% or so. They say I am 89% back to normal. I'll never be 100%, but it sure beats where I was. Every now and then I get spins, espically when the weather changes, but they only last a few seconds, just enough to send me into panic mode! LOL

I just wanted to come on and let you know it does get better! It will get better!

Last edited by Administrator; 05-29-2013 at 01:51 AM.

 
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Old 01-14-2013, 08:51 AM   #8
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Re: story of vertigo/vestibular neuritis

I am on my 5th month of recovery from vn and just finished my therapy but still do the ones at home,they really do help so much.i am finally feeling almost like my self had 3 good weeks then this weekend went to a home show and a couple other stores and the next day woke up not feeling so great so I guess it will come and go like they say,but it gets better every month so hang in there! Altho the last couple days I have had muscle pain in my upper arms and shoulder and neck not sure if it's connected or something else anyone else have this?

 
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Old 01-17-2013, 01:04 PM   #9
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Re: story of vertigo/vestibular neuritis

oh yes, that is normal with this stuff, cassie.......the upper extremity and neck pain is actually associated with atypical migraines......i used to get really stiff, almost flu like, especially the day after stress or exertion......keep doing your VT, it will really help.....one of the exercises that helped me with that was putting one foot on a step, the other on the floor, folding my hands in front of me and closing my eyes for 2 minutes each foot.....this will get the room spinning like a mother, but it really helps with your rehabituation......when you master this in a couple of weeks do the same exercise with just standing on one foot with eyes closed......trust me, you will get better quickly, but it takes a while to work up to these exercises.......do them 3-4 times a day.........makes gaze stabilization seem like a walk in the park..

 
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Old 01-20-2013, 10:54 PM   #10
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Re: story of vertigo/vestibular neuritis

Greetings

I had an attack like that (Tinnitus+Vertigo though) at work last year (first time ever, out of nowhere), and i couldn't get someone to drive me to the hospital so i drove myself, threw up about 6 times on the way there (just by stopping in the middle of the road and puking my guts out) but made it without an accident. Felt like i was dying anyway so i thought a car accident could not be the worse thing that happen to me at that point

Checked into ER, also cleared of heart attack, and they got me to relax with some meds. At that point i was heaving non-stop and hyperventilating, and just in very poor shape. The world couldn't stop spinning, even if i held my arms out and drop them they would fall to the side.

That episode cleared in about 12 hours, but had tinnitus and general dizziness (but not bad like that) for 2 months afterwards.

The issue is, in South Africa, care for inner ear issue guys like me is hard to come by. Even getting an appointment takes about 2 months. So by the time i was passed to someone that actually KNOWS his stuff it was over.

Fast forward 13 months.

No tinnitus, but i'm dizzy, and i've been dizzy for a month now. It is not completely debilitating but i feel "dumb", and lose my balance easily.

some people describe that their eyes jump a little all the time when they focus on something. I figured out mine, it is my heartbeat most of the time. It seems my eyes can't compensate for those pulses any more.

It comes and goes during the day. Sometimes i wake up 90% perfect and then drop to about 25% function the afternoon, and other times i start the morning half dead and then it improves.

I'm forced to figure out a lot of things on my own due to the lack of care, based on this board i am now hunting a clinic that practices Vestibular Assessment and Rehabilitation. I think the training will help me, and getting the correct assessments done will go a long way. If i find a good doctor, i can maybe figure out if it is environmental or disease. Lets see how it goes!

Thanks for all the input here. In cases like these, sharing is most definitely caring!

Regards

 
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Old 05-28-2013, 03:41 PM   #11
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Re: story of vertigo/vestibular neuritis

hi there just wanted to ask if you are doing the therapy for your VN?I have had vn now for a total of 4 months almost and it is very frustrating for sure! I was told that it is a very slow process of feeling better and im never be 100 percent but close.

 
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Old 05-28-2013, 11:16 PM   #12
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Re: story of vertigo/vestibular neuritis

Greetings again! (a few years later)

Right at this moment i am completely recovered for the moment, and here is what's happened since the other post.

I found a doctor with the proper equipment to do a proper assessment, and got a booking about 3 weeks away. The problem is, 1 week before the appointment i woke up the morning completely fine, and have stayed more or less that way until now (2 years?). I did the assessment anyway (cost about $600), and she did find some residual balance issue (very slight), but the equipment is not going to work for me anyway.

I'm completely deaf in my right ear, and 99% of the tests require both ears to be functioning to figure out which ear and which part of the ear is causing the issues. There are some tests available, but she does not have that equipment and with only a smaller percentage of people deaf in one ear, it is very expensive. I'm literally one of 3 people she is assisting that can't be helped completely and spending the $5000 to procure for us 3 is a bit silly.

Eitherway, i've got a deal with her to have an appointment the same day when i have an attack again to do specific dizziness tests and other tests we can do.

2 out of the 3 times now i have had tinnitus and dizziness when i enter a hot and humid environment for more than a week or two, winter seems to be good for me.

That is it. Hopefully we can figure out if it is indeed environmental or disease when i get another attack.

Cheers

 
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Old 05-29-2013, 03:32 AM   #13
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Wink Re: story of vertigo/vestibular neuritis

Hey,everybody just wanted to give an update as I know how it helps to hear from ppl that have been dealing with this a while.I am on month 8 and it has been a slow process but I am feeling better each month,I finished therapy in jan. and now I can go 2 or three weeks and feel fine,only a couple times something will trigger it up, a concert or as crazy as it sounds looking at a chain link fence,may set me back a couple days or a week,but it's just a mild version. So it does get better but it is a loooong process. What helped me the most is when I finally learned what it was I could calm myself down when I started to feel it coming,that made it go faster and relaxing as best you can about it helps a lot, also do the therapy as it really does help.


Good luck everyone,
Cassie

 
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Old 06-11-2013, 10:44 AM   #14
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Re: story of vertigo/vestibular neuritis

if you have any suggestions or tips that work for you dealing with vn would be greatly appreciated

 
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Old 06-13-2013, 06:08 PM   #15
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Re: story of vertigo/vestibular neuritis

Exercises my Pt had me do to help with your Vn...
Get an index card and write the letter "A" on it.
Hold it in front of your face arms length away. Slowly turn
Your head left and right.the object is to keep the letter
In focus. If it blurs, slow down. Time yourself for
30 seconds. Next move head up and down using the card.
Only move at a speed that the letter on the card doesn't move.

Make another card with the letter "B". Hold both
Cards at arms length space the cards about 12"
Apart. Use ur eyes to go back and forth side to
Side looking
At each card for 30 seconds. Now move the cards
Where one is on top of the other.space them out
About 12". Now use just your eyes to look at
Each card..(Your eyes will move up and down)

Slowly walk down a hall. Look left then back forward then look
Right then back forward. Only go as gay as your able to with out
Losing balance.
Repeat this using up and down head movements.

Sit in a chair. Find a focal point on a wall to your right, to
Your left, and in front of you. ( Use post it sticky
Notes...) Now look right, focus then turn all the way to
The left, focus..then turn forward. It's like a 3 step
Turn/focus exercise.
After you get better, try it standing.

Another exercise was standing feet together
Arms cruised over chest for thirty seconds.
Eyes open.

Then stand on one leg arms crossed over chest
For thirty seconds.

Then after you get better, try the standing exercises
And slowly move head left and right...
Then progress to eyes closed.

Don't be frustrated if they are hard or you can't make
It the thirty seconds. Practice a couple times
A day. You WILL get better.

You can also change refresh rate on your computer
If it hurts your eyes.
You can Google gait exercises for vestibular rehab
To get great information

Hope this helps.

 
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oscillopsia, vertigo, vestibular neuritis, vestibular rehabilitation



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