Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Quote:
Originally Posted by alborde
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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...
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Quote:
Originally Posted by warpony2310
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.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Quote:
Originally Posted by shadow08
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.
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.
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.
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?
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?
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).
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
oh wow i saw that verapmil is a calcium blocker they put me on that years ago maybe the blockers are my way I did not feel anything when i took verapmil I might ask him mmm.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Verapamil is in a group of drugs called calcium channel blockers. It works by relaxing the muscles of your heart and blood vessels.
Verapamil is used to treat hypertension (high blood pressure), angina (chest pain), and certain heart rhythm disorders.
i will talk to doctor about this this stuff was givin to me when i had severe pain from bppv eyes hurt alot i had not real side effects this was given to me by terry fife in az the number one vertigo doctor in the state.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
if i am correct migraines are because serotonin widens the arterys mmm verapamil relaxes them i tell everybody here this stuff was good with little side effects.
I stopped taking it because i thought i felt nothing was happening when on it but i was wrong wow thanks for jogging my mind alborde!!!!
Last edited by warpony2310; 01-04-2010 at 06:04 PM.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Although the cause of migraine attacks is not fully understood, it is thought that the widening of blood vessels in the brain causes the pain associated with migraine attacks.
It is also believed that a chemical called serotonin (also known as 5HT) is released in the brain at the beginning of an attack. Serotonin triggers the release of other chemicals that cause blood vessels in the brain to widen. Serotonin itself causes blood vessels in the brain to narrow.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
This is something I wrote elsewhere but is relevant here as people are asking what migraine is:
A myth that still exists out there is that migraine is the result of just a vascular problem – that it is caused by vasodilation or the expanding of blood vessels on pain sensitive structures in the brain. We now know that migraine is a neurological disease that involves much more than the blood vessels (blood vessels expand as a result of the attack). Migraine involves aspects of the central nervous system, neurotransmitters and other brain chemicals, electrical impulses, the body's inflammatory response, the trigeminal nerve (located in the face and head), and others. The physical reaction that begins the migraine attack is called "cortical spreading depression (CSD)". CSD is a dramatic wave of electrical excitation that spreads across the surface of the brain (the cerebral cortex) and is set off by a migraine trigger. Because the cerebral cortex is involved in language, thought, perception, and memory, it's often why a migraine attack trashes one or all of these causing cognitive problems. In MAV the hyperexcitability in the brain stem overlaps with the vestibular system and causes the dizziness/ dysequilibrium/ vertigo.
Scientists are pretty much certain now that CSD explains many if not all aspects of migraine. This model also explains why certain drugs work to prevent migraine, by raising the threshold for aggravating a CSD event. Migraine also involves what is called an "ionopathy" or abnormality of the flow of chemicals in your brain across cell membranes and includes serotonin, dopamine, and noradrenalin. Many migraineurs have lower than normal levels of magnesium, a mineral that plays a role in how calcium behaves and in the regulation of serotonin. Still some migraineurs have problems with calcium channels and explains why a drug like Verapamil (a calcium channel blocker) works for some. Dopamine is yet another brain chemical that some migraineurs have trouble processing. It's no wonder that given the wide range of biochemical problems associated with migraine that one drug can be effective for one person (SSRI for example which targets serotonin only) and not another – or it may require a two or three-pronged approach to end the attacks in someone with a number of chemical abnormalities.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
Quote:
Originally Posted by alborde
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.
Hi Alborde
I do own my Brainport. I traveled to UK as a private patient as I was so desperate and there is no chance of trying this device in Australia. I could not wait years for us to catch up! It was a costly exercise but has been worth it as the quality of my life has improved so much already. Although not approved for sale here, there is nothing to stop a person buying it and importing it for personal use. It is available in Canada and I presume US citizens can do the same as I did. The device is expensive, costs 7000 euros but it is worth much more than that to me!
People who encounter us do not always appreciate what we were like before these problems hit us, how different our lives were. I worked at a high level in a government department in Australia, traveled regularly for work, conducted training and did much public speaking. After my brainstem injury at age 46 I found it hard to speak, slurred my words, found it difficult to make decisions, and I looked about 90 yrs old. More than six years on I feel as if I am getting younger each year, though certainly not as sprightly as other 53 yr olds! Dizziness and balance problems were just a fraction of the neurological deficits I experienced. Recently I was able to give a presentation about Brainport to some staff from the Vestibular Investigation Unit at the Victorian Eye and Ear Hospital. I was told afterwards that I am an excellent speaker! I was so thrilled that I have progressed to the point where I was able to do that and get such positive feedback. A patient with vestibular problems attended the session and is now in the UK for Brainport training. I am over the moon at the possibility that he will get similar benefit to me and was grateful for the opportunity to give him a try of the device before he committed to an overseas trip. His results were so promising after one week of short sessions that he decided to buy a device. This patient told me that he felt so emotional when he heard me speak as he could relate to my situation.
Isn't it amazing to connect with people who understand what we are all going through?!!! When I read the patient testimonials for the Brainport on the UK website I could not stop sobbing I was so overcome that these people would know exactly how I felt each day. The brain injury left me unable to cry for several years but it was like a dam burst in me that day!
I hope for you that you have another opportunity to continue your rehabilitation with the Brainport. Never give up hope that you can change your life.
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
well i went to doctor and he said it wasn,t labyrinthiti,bothering me it was migraine,he gave verapamil,120mg at night and 120 in mourning ,i will let you no have i feel .
Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?
I hope the verapamil works for you.
MAV (migraine associated vertigo) can be a miserable thing to have!
One thing to think about and just my opinion:
A neurologist is likely to say that it is a neurological problem like migraines.
Have you seen a neurotolgist (a doc who specializes in brain/inner ear)? I wonder what she/he would say?
jeszab,
i have so much to say! I will write more later. Your post makes me very happy!
