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Old 10-21-2007, 07:36 PM   #1
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Question Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

I am trying to help find an explanation for my father. He is 61 and has had the following symptoms:
* extreme dizziness. It starts when he gets out of bed in the morning and gets progressively worse. There are times he has to stop what he is doing bc his eyes are bouncing up and down so bad. He was diagnosed with downbeat nystagmus, but the doctors have not been able to find a cause.
* Tinnitus
* Bouncy vision
* Blurry vision
* Intermittant double vision
* He still surfs and finds that his symptoms do affect his balance when surfing, but other than that and some balance issues from the dizziness, he has no balance problems
* Maybe a little short term memory loss
* Some forgetfullness
* Some mental and/or physical fatigue out of proportion with his acitivity
* Left knee arthritis
* some shoulder issues, which he feels are not related to his other symptoms...rotator cuff problems that wil require additional surgery

He does not have:
* Vertigo
* Hearing loss

He has been to his primary care doctor, a neurologist in Edison NJ; a neurologist, ENT, and one other doctor at Thomas Jefferson University in Philadelphia. He has had several MRI's, balance chair tests, hearing tests, posturography/platform test, MRA (?), blood work done. All have come back normal. As I mentioned, the only thing the doctors can diagnose is the downbeat nystagmus. They have also ruled out Meneire's disease, and did not see any abmornalities on the MRI, including acoustic neuroma.

He has tried a few medications such as klonopin, phenergan, and one other anti anxiety medication, all of which have not helped at all. He takes a multivitamin every day, B complex supplement and I think a magnesium supplement. He has become more and more depressed, frustrated, and anxious with a lack of explanation for his symptoms, which have gotten progressively worse over about the past 5-7 years.

Does anyone have any suggestions as to what he might try next?

 
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Old 10-21-2007, 07:42 PM   #2
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Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

Have they done a B-12 test?? just curious, because if it is low, it can cause some neurologic symptoms...such as vision issues, imbalance, tingling in extremities, gastro issues, etc. Mine was low at the beginning of all this and I'm only 26...but it is more prevalent with older people. As far as the tinnitus...not sure if that can be associated. However, i treated my low B-12 and it hasn't solved my problem as of yet with the constant jumpy vision and imbalance. Have you seen a neurotologist or just the ENT? Most times a neurotologist is way more knowledgeable about dizzy patients that most ENT's,. GOOD luck...i wish him (and yourself) the best with this!

Last edited by alexiwildchild; 10-21-2007 at 07:43 PM.

 
Old 10-21-2007, 07:47 PM   #3
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Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

Yes, he has been to two different neurologists and two different ENT's. A doctor (neurologist) friend of my husband's also looked at his MRIs and all have not found anything on them. His blood levels have all come back normal. He is taking a b complex supplement, but I also realize that won't help if it isn't absorbed. My mom is thinking of finding a rheumatologist to go to. Not sure what good that will do, but he is so pessimistic and down about feeling like he does.

 
Old 10-21-2007, 08:03 PM   #4
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Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

Quote:
Originally Posted by mom*2*meghan View Post
Yes, he has been to two different neurologists and two different ENT's. A doctor (neurologist) friend of my husband's also looked at his MRIs and all have not found anything on them. His blood levels have all come back normal. He is taking a b complex supplement, but I also realize that won't help if it isn't absorbed. My mom is thinking of finding a rheumatologist to go to. Not sure what good that will do, but he is so pessimistic and down about feeling like he does.
I would suggest, even if it isn't low, to take a B-12 sublingual that is taken under the tongue for absorbtion--there are methylcobalamin kind at 1000mcg that he may want to take daily or a few times per week--just to help with energy and the fatigue...it is also supposed to help with the nervous system and the brain----but that's just a thought. Maybe a rheumatologist may help--so i am guessing he had thyroid tests with the blood work and they were normal also?? i have talked to many people with thyroid issues that can have some of the similar symptoms....

so i am assuming that when you say he's not having vertigo, but just dizziness---does it refer to just vision dizziness...or actually feeling like the swirling bad dizziness? just curious. my issues are with the vision and imbalance, and i did have swirling vision/dizziness before it came to this. if ya want, read the thread about oscillopsia, but i don't know if it will help in his particular case...the more you read here, the better it is to be educated on this for another doctor's visit....at least that is what i've learned over the last 4 months. how long has he been dealing with this? does he have migraines?

 
Old 10-21-2007, 08:41 PM   #5
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Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

He really needs to see a specialist in this area, if he has been diagnosed with downbeat nystagmus. You might be able to find papers on downbeat nystagmus and see the author if they are a clinician as well as a researcher. From memory, downbeating nystagmus suggests a neurological cause.

Have they tried him on any anticonvulsants? Neurontin is often helpful for downbeating nystagmus.

 
Old 10-22-2007, 12:26 PM   #6
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Talking Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

Hi

...."....Any suggestions?".....

Yes---five suggestions:

Agree with Adam---needs to get checked out by a NEUROTOLOGIST(this not a Neurologist) not sure where in NJ he is but he went to Jefferson---which is good for a lot of medical stuff(but not necessarily this one)---

Suggestion-he should think about going to:

Univ of Penn
The Balance Center
Hospital of the University of Pennsylvania
Department of Otorhinolaryngology: Head and Neck Surgery
Five Silverstein
3400 Spruce Street
Philadelphia, PA 19104

Web page here:

[url]http://pennhealth.com/ent/balance/[/url]

The Univ of Penn Balance Center is excellent in figuring out what wrong in this area.

Suggestion---Also---using the Down-beating Nystagmus as the principal symptoms(not the only one---but the principal one)

Consider:

Chiari Malformation (mainly type I) (Updated September 9, 2007)

Web page located here(Northwestern Univ, Dr Hain's Site)

[url]http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html[/url]

Northwestern Univ, UCLA, Univ of Penn, John Hopkins, etc....are the Centers for Excellence in this area.

It is interesting to note---(from the Northwestern Univ page):

..."Curiously, the author(Dr Hain) has encountered patients from time to time in which the reading radiologist did not notice that the person had a Chiari malformation. In once case, it was a very substantial one. Because of this, we think it is prudent for the doctors who notice down-beating nystagmus on examination, to review the images of their patient's MRI's."....

Suggestion----Should be a simple question with the MRI's he has taken:

---Did you/they look for a "Chiari Malformation(Type I through IV)" to/and then rule it out??---

Suggestion---Also worth considering (from the Northwestern Univ web page):

"Differential Diagnosis Areas

Other causes of down-beating nystagmus that should generally be considered are paraneoplastic cerebellar degeneration, and anterior canal BPPV."

You can get to these pages---from the Chiari Malformation page(hyperlinked)

Suggestion----The "Sticky" first post on this board---contains the latest research/clinical---site for this medical area.

Good Luck!


Last edited by Subs30; 10-22-2007 at 02:25 PM.

 
Old 10-26-2007, 04:15 PM   #7
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hello subs30

thank you for taking the time to read this, charolete sugested i talk to you, i was hit by a taxi 11 months ago, i suffered a head injury,after 4 months it was finaly diagnosed that my vestibular occular reflex was affected, MRI SAID vestibular cochlear nerves are normal bilaterally, normal internal audiotory canals,no cause for hearing loss on MRI. only one ear is affected, the right, high frequency hearing loss, and tinnitus. went and saw a neurotoligst in N. Y. ENG test showed an RVR of 53% in the right ear. its almost ayear now, been doing vrt s since may, things are better for me since may , but still have that "shaky camera picture" when i walk, just trying to find out how long compensation takes and do you have any good advice for excercises
kmac74

 
Old 10-26-2007, 04:38 PM   #8
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Re: hello subs30

Hi kmac74, compensation can take up to two years. Keep up the VRTs, dont get discourage if takes up to two years. With the exercises you are doing your VOR will increase and your shakey vision will slowly go.

Keep up the hard work!
Cathy

 
Old 10-26-2007, 04:51 PM   #9
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Re: hello subs30

Thank you for your posts. I have passed the information along to my parents. I will let you all know if we find anything out. My dad seems to recall having been to UPENN several years back. Maybe/Hopefully they might have an answer for him this time.

THanks again!

 
Old 10-26-2007, 06:09 PM   #10
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Frodoh HB User
Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?

Has he had Doppler tests on his carotid and vertebral arteries to ensure proper blood flow to his head?

 
Old 10-26-2007, 08:02 PM   #11
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Re: hello subs30

In Edison at JFK there are a group of neuro-otologists at the Neuroscience Institute. Have you checked them out?

 
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