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Old 01-10-2010, 04:07 AM   #61
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Alborde, have replied to your question. I am excited to hear that you are considering buying a device. Given the benefits you received in your trial I don't think you would regret this decision, it could entirely change the quality of your life long term. You just have to believe in it.

As I mentioned in my other posting, the story of Cheryl Schiltz in Norman Doidge's book was incredible. She was barely able to stand on her own for five years and made a rapid recovery through use of the Brainport. I have since read that she made a complete recovery. Reading her story has changed my life as it was my first inkling of the existence of this technology. Not too many professionals in the neuro and vestibular field know much about it in Australia. I am guessing most neurologists have never heard of it. I find this so frustrating as I am sure there are many thousands who would benefit from the technology yet it is hugely expensive. If it was more widely available it could become more affordable over time.

I mentioned that I met a patient here recently with vestibular problems who has gone to the UK for training after meeting me and trying out my device. He has emailed me to say that his training is progressing well and sounds very positive so far.

 
Old 01-10-2010, 12:50 PM   #62
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by jezsab View Post
Alborde, have replied to your question. I am excited to hear that you are considering buying a device. Given the benefits you received in your trial I don't think you would regret this decision, it could entirely change the quality of your life long term. You just have to believe in it.
Jezsab,
Thank you! It is a lot of money, but getting my life back is worth anything.
My results were amazing. I just wish we could rent it like in Canada.
Your story continues to inspire me.
Thanks for sharing and being my internet friend!
I can feel myself sliding back to the state I was in before the BrainPort as the effects wear off.
I was having migraines 1/3 of the time. I was unable to do lots of basic things, like stand long enough to take a shower. I don't want to go back to that place.

 
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Old 01-10-2010, 02:13 PM   #63
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

does anyone know if there are drugs to reduce inflamation of the nerve behind the eye?

 
Old 01-10-2010, 04:56 PM   #64
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

good news skip day dose feel better cause to much hypertension and bought sun glasses and take a litttle over the counter paibn killler,,,see how i feel tomorrow,,,,

 
Old 01-11-2010, 02:44 AM   #65
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Alborde, I read in another post of yours that you began having these problems at age 21 and it saddens me that you have struggled so long. It must have had an enormous impact on your whole adult life! I was born with the angioma in my brain but was fortunate to go through my life unaware of that timebomb until diagnosed at age 40 after a bleed. It was a shock when, after a third bleed, I required neurosurgery and was unable to work again at age 46, but at least I had an active and very full life up until then. I have often thought how different my life would have panned out if a bleed had occurred in the earlier part of my adult life.

If you can find a solution that helps you to overcome your health problems you still have time at your age to enjoy so much more of life.

I wish I was in better health to be able to help others gain access to technology to overcome these insidious disabling symptoms. At the moment my focus has to be on my own rehabilitation but I hope down the track to have some involvement in bringing the technology to Australia.

There is talk of development of technology that uses an audible signal to help people with dizziness and balance problems but it is early days. The idea would be to use the program through an Ipod but I am not sure how it will work as yet. I hope to get to check out a prototype in time and it will be interesting to compare. Imagine how easy and affordable that would be if it works! Unfortunately all research takes time and much of the findings don't reach we poor patients for years, which is a sad state of affairs. I think sometimes the system loses focus on the reason for the work being done by the scientists. Papers are written, more research is done but unless there is a big dollar in it we don't see the benefit. I go through much mental torture thinking about this! I am fortunate that I have the ability to research and explore solutions for myself despite my disability, plus I have the support of my wonderful husband, family and friends. There are so many people who have severe health problems but don't have the opportunity to get the help that they need.

I remain focused on improving my health and stay positive as I believe strongly that this has helped me to recover well over the past six years.

 
Old 01-12-2010, 01:03 PM   #66
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

good progress eyes are not hurting 6th day on verapmil ,got up went to pick up leaves in yard get loose still feel little dizzy try stay busy and balance prob still there but a little better.I don,t take any oc meds can watch tv a little. mmmmm

 
Old 01-12-2010, 04:34 PM   #67
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by warpony2310 View Post
does anyone know if there are drugs to reduce inflamation of the nerve behind the eye?
Have you talked to your doctor about this?
Perhaps steroids, but I am not an expert.
I think they talk about this sort of thing on the multiple sclerosis board... (not saying this is your diagnosis- i'm not a doc.)

Last edited by alborde; 01-12-2010 at 04:36 PM.

 
Old 01-12-2010, 04:41 PM   #68
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

jezsab,
Thanks for your kind thoughts.
The crazy thing about having this for most of my adult life is that
I did not realize how impaired I was until I used the BrainPort.
I thought it was normal for your visual field to jump when you walk.
I thought it was normal for driving to be exhausting.
I thought it was normal for patterns in bathroom tile to bounce around.
I knew it wasn't normal to have fatigue problems, vertigo problems and migraine problems like I do.

I knew I had an inner ear disorder, of course.
But my occupational therapist has always been very much a "cheerleader."
She never wanted to tell me how bad my tests results were.
She wanted me to continue to push myself to achieve my dreams.

It wasn't until I got a taste of "normal" with the BrainPort that I truly realized
how great things can be.
I love hearing your story and how far you have come.
It is inspiring.

 
Old 01-13-2010, 07:07 PM   #69
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

This is very interesting the doctor gave me fioricet for migraine pain today i was afraid because it was otc stuff but a mild sedative in it,,,,,,well to make a long story short i went to the gym and was not tired and said to myself all the people in here should not bother me if there is a mild sedative in this stuff,,,,,,and i was right my eyes did not hurt and i worked out for a half hour ,,doctors says the sedative relaxes tension in migraine wow it worked!,

 
Old 01-14-2010, 10:09 AM   #70
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

This sinus thing ,,,,,,mav thing is difficult as much as I want to go and do things in the mourning I get the dizzys no matter what i take,,,,,I can,t get rid of it leaving me no option but to stay home till it goes away,,,,I did talk to a ssi lawyer and explained i have ten years of medical documentation and they said they would take my case ,,,,,,,,,I am fifty now and don,t get me wrong i want to work but this stuff is disabllng,,,,,,mild turning in the vision and balance disorder is tuff ten years of it ,,,now sinus and dizzys in the mourning,,,,mmmmm

 
Old 01-15-2010, 02:04 PM   #71
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

well heres the kicker i weeded out the dizzys first i said no eye jerk with dizzys not vertigo ,,,, now no dizzys with blood pressure,,,,,,whats left dizzy with sinus yes this mourning like i read on the internet take saline in the mourning flush nose and iburprofen and guess what the dizzy went away not only that i can look at computer and eyes get sore but don,t hurt,,,,mmmmmmm

 
Old 01-17-2010, 11:42 AM   #72
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

real good day no dizzies second day on afrin i am going to get nasenex to shrink up in sinuses i use to use it i think with verapimil and nasanex i could go back to work if dizzies leave,,,,,,,we will see,,,,,,,,

 
Old 01-20-2010, 02:57 AM   #73
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Hi jezsab and alborde

Have been following your various posts on this and other boards and find it really heklpful to know that I am not alone - and between the 3 of us we can cover most continents!!. I too suffer the continuous brain fog, fatigue, bouncing eyes and migraines and although am still working I find it a daily struggle. I am lucky that I am mostly desk based but the daily drive to and from the office (and in the dark) is very tiring.
I also find it really interesting to hear about the experinces everyone has had with the medical profession - we sit here in the UK thinkiong that our doctors are fairly advanced in their thinking but it seems to me that there is much more available in the US and Canada.
And Jezsab, following your helpul information on the 'bilateral vestibular failure' board I have now tracked down Debbie Cane and she has agreed to see me. She wants me to try VRT first before Brainport, but I am prepared to give anything a try. I'll keep you posted.

Best wishes to all fellow sufferers.

 
Old 01-20-2010, 11:31 AM   #74
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Hi All,

I don't know whether this is exactly my problem or not but many of the symptoms that I am hearing everyone discuss are the same as I am experiencing. I have a continuous brain fog and pressure feeling in my head. At times I am dizzy and feel like I am on a boat that's rocking back and forth. I feel really weird in elevators, especially when they stop and I get off and try to walk. Aside from this I have vision issues that don't go away... it's almost like television static or like im looking through a screen all the time... it's really hard to explain it but there is some sort of vision disturbance. It feels like really bad allergies that won't go away... I'm always plugged up first thing in the morning but allergy medications don't help. I have felt this way for 6 or 7 years now and my doctor has pretty well given up on helping me. I have taken Ativan for several years to help cope with the anxiety and other symponts this causes as well as beta blockers for rapid heart rate.

Does any of this sound like an inner ear issue?

I look forward in your thoughts.

thanks,

 
Old 01-20-2010, 03:30 PM   #75
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by Angela Hales View Post
And Jezsab, following your helpul information on the 'bilateral vestibular failure' board I have now tracked down Debbie Cane and she has agreed to see me. She wants me to try VRT first before Brainport, but I am prepared to give anything a try. I'll keep you posted.
So sorry you are suffering, but glad to know that we are not alone!
What is the bilateral vestibular failure board?
I'd like to chat there...

Hope today is better than most!

 
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attention, cognitive, inner ear, memory, vertibular



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