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Old 01-02-2010, 11:47 AM   #16
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by studyin View Post
This is all textbook migraine associated vertigo. I am amazed at how many people are walking around with this condition and do not know it. It's a sad state of affairs that most doctors out there know very little about migraine and how commonly it can cause chronic vertigo.

Your case is not unusual in that it has gone on for years – decades even for some. There's a great paper by John Waterston MD FRACP in Melb, Australia. He treated a bunch of people with MAV, one who had this for over 10 years and they had complete resolution of symptoms on 0.5 mg pizotifen, an anti-migraine med. There's a number of different meds to try after altering your lifestyle first. You do not have to live like this.

Best ... Scott
studyin,

do you have a link to the article? does the paper specifically deal with cognitive problems and MAV?

 
Old 01-02-2010, 12:48 PM   #17
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

has anyone had luck with over the counter migraine meds i took one today and the light does not bother me as much also i walked around the store and it felt better?

 
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Old 01-02-2010, 12:56 PM   #18
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

I don't think HealthBoards permits members to post links. Check out the posting policy.

OTC migraine meds are usually just pain relievers + caffeine. They don't help me at all. That's great that they are helping you.

Usually people with MAV are treated with migraine preventives, which include beta blockers, calcium channel blockers, anticonvulsants, and trycyclic antidepressents like noritriptyline.

However, we are not sure if MAV is the diagnosis of the original poster...

 
Old 01-02-2010, 03:16 PM   #19
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

I feel good that i have an understanding of whats up with me ,i went to the gym today and the migraine otc stuff gave me some relief (from the labyrinthitis)or vertigo to but i still have balance issues i try to live with from bppv ten years later or damage to the inner ear.they say it could take 12 months til i get balance relief with exercises.,,,,,,,,,,,,,

 
Old 01-02-2010, 03:18 PM   #20
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

by the way ,I have been coming to this site for years and there is good info here ,my other screen name was billy2u,long time ago!

 
Old 01-02-2010, 09:00 PM   #21
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

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Originally Posted by alborde View Post
I don't think HealthBoards permits members to post links. Check out the posting policy.

OTC migraine meds are usually just pain relievers + caffeine. They don't help me at all. That's great that they are helping you.

Usually people with MAV are treated with migraine preventives, which include beta blockers, calcium channel blockers, anticonvulsants, and trycyclic antidepressents like noritriptyline.

However, we are not sure if MAV is the diagnosis of the original poster...
oh, it'd be nice to read the article. studyin, it'd be great if you could hook me up with a title and to the article if you can. i'd love to read it

alborde,
i'm taking topamax for what my doc thinks is MAV. can i ask you if you're taking it as well? if you don't mind, what dosage is it working for you? i'm taking 25mg in the morning and 25mg at night but am still suffering from symptoms...

 
Old 01-02-2010, 09:28 PM   #22
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by shadow08 View Post
do you have a link to the article?
I can't post a link but if you look for "Chronic Migrainous Vertigo" you should find the paper on pubmed, a site which is allowed here.

Cheers ... Scott

 
Old 01-02-2010, 09:31 PM   #23
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by warpony2310 View Post
Can my balance issues be creating MAV i sometimes feel like two pistons are going back and forth between my ears.
There was a paper recently showing that dizziness can trigger migraine but it does not "create" MAV. Migraine is a genetic disease you were born with. It's active now and various things trigger it/ make it worse. You have to work out what they are and eliminate as many as possible. If that doesn't work, you'll need a preventative med.

Scott

 
Old 01-03-2010, 07:04 AM   #24
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
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alborde,
i'm taking topamax for what my doc thinks is MAV. can i ask you if you're taking it as well? if you don't mind, what dosage is it working for you? i'm taking 25mg in the morning and 25mg at night but am still suffering from symptoms...
I had trouble tolerating topamax. I wish I could help.
I take zonegran.

 
Old 01-04-2010, 04:34 AM   #25
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

To find out more about the Brainport balance device visit the company website of Wicab (US or UK website) and you will see more information about how it works and what can be treated. I was amazed when I read the patient testimonials on the UK website as I could relate to so much of how those people felt and their experiences. I am so happy that I looked into this technology. Although my health problems are different to yours the technology can work for a lot of different complaints that cause vestibular problems. My problems come from a brain stem bleed and neurosurgery in 2003 and I have been living in a constant brain fog for over six years. The landscape moves when I walk around and it feels weird. If I move my head I lose a sense of where I am. I could go on about the many problems I have experienced but just wanted to say that the Brainport is gradually transforming my daily life and it has become a lot more comfortable since using it. I started in early June and noticed an improvement within a couple of days after training twice a day for 20 mins each time. I noticed after a few weeks that the landscape didn't seem to be moving as much and I was walking much steadier. My stamina has improved greatly and I don't think about how dizzy I am feeling as it has decreased much of the time. I used to feel like my body was buzzing/vibrating when waking up in the morning but only feel this intermittently if I have been overdoing activities.

The symptoms we suffer such as mental fatigue and concentration problems are due to neurofatigue and they are so debilitating. I can really sympathise with you Julius2009 as I have struggled with similar problems. It is not obvious to those around us that we are feeling so bad as the symptoms are invisible. Don't give up, keep searching for answers as you can still be helped after a long time. I am a good example of this having had a serious brain stem injury and hitting a plateau of recovery in 2008. To have experienced such a big improvement six years after my surgery after only a few weeks of training with Brainport is really miraculous to me and I highly recommend you try it if possible.

 
Old 01-04-2010, 10:41 AM   #26
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

jezsab,
I can't tell you how happy it makes me to read your post.
Only someone who has experienced life before and after using a BrainPort can understand how life-changing it is. It is a miracle.
It is so nice to find someone like you who understands and can relate!

You wrote so well about the cognitive impact.
I found that after a couple of week of using the BrainPort, words would come out of my mouth and surprise me! I was incredibly articulate. I had a great vocabulary.
Of course, I always had that vocabulary, but I was so mentally fatigued from the inner ear disorder that I fumbled over words on a regular basis.
I am a college professor and the cognitive impact of my inner ear disorder has been very frustrating!

jezsab, do you own the BrainPort?
I only had one for 8 weeks as a participant in a clinical trial. They are not yet approved for sale in the U.S.

 
Old 01-04-2010, 10:51 AM   #27
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Jezsub,
Thank you for your post.
It makes me so happy to connect with someone else who understands how amazing the BrainPort can be. Thank you for sharing your story.
I have bilateral vestibular loss. The BrainPort was a miracle for me. It got me back to my pre-dizzy self.

You are so right about the cognitive problems.
With the BrainPort, I found my words flowing. I was so articulate. I had a huge vocabulary!
Of course, before the BrainPort I always had that vocabulary. I was just too fatigued. I always had words on the "tip of my tougue."
I am a college professor and being articulate and sounding intelligent is important in my work. I hate it that the dizziness robs me of that so often.

I only had a BrainPort of 8 weeks, as a participant in a clinical trial in the U.S.
They are not yet available for purchase here.
Jezsub, do you own one?

 
Old 01-04-2010, 03:02 PM   #28
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

alboarde i go to the nueraligist tomorrow what are some good anti migraine meds i can ask him about or anyone what success have you had with any of them?

 
Old 01-04-2010, 04:43 PM   #29
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

A lot of people respond well to anticonvulsants like topomax, zonegran or depakote.
You may also do well with a calcium channel blocker or beta blocker like propranolol.
Finally, tricyclic antidepressants like nortriptyline and amitriptyline are often used.

I am glad you are asking your doctor. He/She will know which class of drugs is best for you. I have seen the best results with anticonvulsants (but they also seem to have the worst side effects).

 
Old 01-04-2010, 05:21 PM   #30
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

omg not depakote i tried that ,i felt like i was on some hard core thing i would leave doors open and forget to lock house are they all like that?

 
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