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new to board - question about vertigo not improving with rehab

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Old 09-10-2008, 06:12 PM   #1
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new to board - question about vertigo not improving with rehab

I am a 27 yr old female. I have been unsteady and dizzy for years, I thought perhaps it was a combination of slightly low blood pressure and slightly low blood sugar, however even if those play a small part, over the years as it has gotten worse I am aware it isn't those alone. So I finally went to the ENT, had a normal MRI, very abnormal ENG. Everyone told me I would be dizzy when they put hot and cold air in my ears, but I didn't feel dizzy at all (which I later found out wasn't a good thing) Also I had horizontal nystagmus throughout most of the rest of the test. I was then told to start vestibular rehabilitation, and that 80% of people greatly improve in 3 weeks. Well, 5 weeks later, there has been no improvement. In fact, as of last week, I actually think some symptoms are worse. I still sidestep almost whenever I turn, sway back and forth just standing still, and just am unsteady in whenever I do. I was told I compensate very well, but that my response is very delayed. I am a letter carrier so I walk all day with these symptoms, have yet to actually fall, I always catch myself in time by stepping, and yet I was told I have the balance of about an 80 yr old.
I had a master balance test, which showed, what was already known. I am very unbalanced. I fell off on 3 of the movements, and was moving all over the place on the rest, even just standing I wasn't steady.

The therapists now said that I should go to the ENT (who I have yet to see, was just told to get these tests and then sent to therapy). I was told by them I have BPPV, and yet they said something about a sensory problem and the severe delay in my brain or inner ear. Honestly it sounded like they weren't sure what was going on. They told me that the ENT may refer me to a neurologist since there has been absolutely no improvement, or might say to go back to therapy and be more aggressive.

My brain MRI was normal, what would a neurologist be looking for? And what else can be done, if the therapy didn't work at all?

I look forward to any input or advice because I'm a little frustrated. I wouldn't have pursued this this far if I hadn't heard that I will just continue to get worse once my brain can't compensate anymore. Thanks.

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Old 09-10-2008, 09:46 PM   #2
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Re: new to board - question about vertigo not improving with rehab

Nonsense!! You are only 27 years old! Your brain has plenty of compensation in it. Perhaps your therapy needs to be done somewhere else.
What was the actual diagnosis? With your ENG as bad as it was, what were you told was the problem? Unilateral vestibular loss? Bilateral vestibular loss? Were you on any antibiotics before you got dizzy years ago?? Gentymicin perhaps?? Just curious as this damages the inner ear. Did you get any ear infections that could have damaged your ear? The brain can compensate for all sorts of damage to the ear. The key is to do what you are doing. Keep moving!!! Do not take vestibular supressants. No klonopin, vallium, or the alike. You will delay compensation. I think you need a second opinion and perhaps a different program. you are on the right track though. Be glad your problem is inner ear and not central (Brain) in origin. Those problems are MUCH more difficult to deal with. You will be ok in the long run!


Old 09-10-2008, 10:46 PM   #3
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Re: new to board - question about vertigo not improving with rehab

Hi Amoeba:

Do you have jumpy vision?
Do you get bouts of quick vertigo?
Sounds like you may have bilateral vestibular damage. In other words both your inner ears are not working properly.
I have the same condition. I do not get dizzy or get vertigo when warm or cold water is pumped into my ears. I have heard that this test is sometimes not entirely accurate.
Anyway, you will have to work much longer than 3 to 5 weeks if you indeed have BVD.
Do not let this get you down, you are young and will recover. I did not lose my inner ear function until my late forties and I have been able to recover and do most things that I used to.
Try not to get all worried and freaked out, this can slow your recovery. The symptoms are unpleasant but very typical of what many on this site have experienced.

Continue doing your VRT exercises and keep challenging yourself.
This board is an excellent place to get information and help.


Last edited by manybikes; 09-10-2008 at 10:51 PM.

Old 09-11-2008, 02:03 AM   #4
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Re: new to board - question about vertigo not improving with rehab

perhaps you could consider not wasting time with ENT. If is is a CNS problem you should be seeing a neurologist and if it is inner ear then you want a neuro-otologist. I only got my diagnosis when I got referred to the otologist. Vrt is not a quick fix and 5 weeks is nothing. As you have been unsteady and dizzy for a long time I think it was irresponsible of anyone to suggest you would improve in 3 weeks. I have been doing vrt several times a day for 18 months and got more improvement in the last 3 than in the previous 15. I think we compensate in fits and starts - you make some improvement and then it levels out, then by making the regime more difficult you move up to the next level.
Stick at the exercises and get to see the right specialist
good luck

Old 09-12-2008, 02:14 PM   #5
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Re: new to board - question about vertigo not improving with rehab

Hi amoeba:

You may be misunderstanding vertigo. Vertigo is when everything around you spins. Many people find it almost impossible to stand upright during an attack of vertigo. The attacks can be almost violent in nature and last anywhere from 1 second to hours.
I am no Doctor but I do not believe there is any PT that will compensate for vertigo (unless you have BPPV)
If you have bilateral vestibular dysfunction you can learn to compensate for both balance and your VOR (vestibular ocular reflex).
Do not be distressed about seeing a Neurologist or Neuro-otologist. They will check for other causes like migraine. Certain types of migraine can cause profound bilateral vestibular loss.
I have bilateral dysfunction and my vertigo attacks actually decreased over time which is normal.
Physical therapy for inner ear dysfunction is not a pass or fail situation and 3 to 5 weeks is a very short time span. If it was normal for 3 weeks of PT to cure people this board would probably not exist.
You will get better amoeba but it takes time. After I was diagnosed with bilateral dysfunction I would measure progress in terms of months. It's hard work and very frustrating but you must keep at it.

Old 09-12-2008, 05:45 PM   #6
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Re: new to board - question about vertigo not improving with rehab

I have never had an attack of vertigo as you explained. Also, I have always felt I am the one spinning, not other things. I get a few seconds of dizziness feeling when I stand up or turn or movements like that, but nothing extremely severe causing me to fall. However, I am constantly unsteady, just as often as when I feel dizzy as when I don't. I sway back and forth just standing still, and sidestep throughout the day to regain my balance. Actually, I do better moving than standing still, but even then I am very unbalanced and unstable, I think I can just compensate better somehow.

It seems as I research these different inner ear problems, I don't fit any of them, but have parts of some and parts of others. Since I have yet to see a real doctor in all this, just a physician assistant at the ENT who sent me for an ENG and then to vestibular therapy, I am hoping that when I go later this month, I will actually hear a real diagnosis or a better idea of what they think is going on.

Thanks for your input.

Old 09-12-2008, 06:08 PM   #7
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Re: new to board - question about vertigo not improving with rehab

Actually amoeba your symptoms are very similar to mine.
I very rarely every get vertigo anymore.
The reason you do not get vertigo may be due you have bilateral dysfunction.
If you have one weak inner ear and one good one you can get many vertigo attacks. Vertigo is caused by mixed signals coming from both inner ears. Once the function in both ears hits a equal low (or not function at all) the mixed signals stop and the vertigo stops.
It is not uncommon to lose function in both balance centers for no reason.
Why I lost mine is still unexplained. They call this idiopathic cause.
I too feel off balance myself at times.
Your side stepping sounds like a modified type of stagger that you are using to keep balance.
I also cannot stand heel to toe with my eyes closed for more than about 10 seconds.
Prepare to get very frustrated with finding the answers you seek. If you are a true bilateral it is very rare (less than 30,000 in North America from what I have read) Finding a doctor or anyone who has a lot of knowledge of this condition is sometimes hard to find.
How do you fare at night with walking or driving?
Does your vision jump up and down as you walk or move?
Do you get weird sensations in your head when you move?

Old 09-13-2008, 02:29 PM   #8
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Re: new to board - question about vertigo not improving with rehab

Maybe I am one of the rare people like you with bilateral dysfunction, it sounds closer to my symptoms than BPPV. I was told that both ears did not respond as they should have, although I think they mentioned the right is worse, or that I fall to the right more anyway. It definitely makes sense what you wrote about vertigo being for people who still have one good ear.

I have never noticed a problem driving at night, however walking in the dark is very difficult, I walk crooked and have trouble keeping my balance. I have never had a problem with my vision, however sometimes I feel my eyes jerking back and forth, although not often. If I am focused on something like reading, it never happens. It happens most when I am trying to fall asleep or if I wake up during the night, both when I have my eyes closed. It has kept me up a few times, but is not one of the main symptoms.
As far as weird sensations when I move, I thought that was vertigo. It feels like my head spins a few times or is really light. It doesn't last long, (other than the days that it feels like this all day no matter what I am doing) and isn't too severe, compared to others on this site that is for sure, or compared to my instability. I originally thought that this was what caused the sidestepping or unbalance but they seem to not always go together at all. The unbalance is much more of an issue.

I definitely plan to mention bilateral dysfunction when I go to the doctor and hear the response, especially if they don't know what else it could be.

Thanks. I hope you continue to improve yourself.

Old 09-13-2008, 10:18 PM   #9
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Re: new to board - question about vertigo not improving with rehab

hi amoeba:

You are correct in mentioning this to your doctor. After I had my first ENG I did not research the results and my Doctor and my ENT said nothing about bilateral dysfunction. It was my PT who told me I had severe bilateral damage and this was a year after the test.

Do not be afraid to be aggressive and have a say in your case management.

I too used to stagger like a drunk in both daylight and dark conditions. My head felt weird etc.
I now walk normal and walking at night is not perfect but it does not bother me near as much as it used to. I am back riding my motorcycle and most of my friends have trouble telling there is anything different about me.
None of this came easy but I am continually improving (small relapses still come and go).
Anyway...pressure your doctor to get an accurate diagnosis.
You will be okay amoeba.

Old 08-21-2012, 11:45 PM   #10
tikki goldberg
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Re: new to board - question about vertigo not improving with rehab

have the same problem as you and i went to the best place in California - the House Ear Clinic who then sent me 2 years ago to England PT in Garden Grove.....condition is better but still going on.....the Epley method has been done on me at least 50 times

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