Category Archives: Vestibular disorder

How Veda can help patients with Vestibular dysfunction.

Etrily’s Story

Have you ever had a doctor tell you that there was nothing wrong with you, that your vestibular symptoms are all in your head, and that you should just get out of bed and stop pretending to be sick?

That’s what happened to Etrily L. from Oxfordshire, England. For over ten years doctors dismissed her vertigo, imbalance, nausea, headaches, and brain fog as psychological symptoms. They even tried to get her children taken away from her.

“I didn’t have the physical or mental strength to fight,” says Etrily, whose voice quivered when describing her vestibular journey. And friend, I have to tell you, I couldn’t help but get choked up listening to the terrible trauma Etrily has endured.

That’s why I’m passionate about VEDA’s mission to inform, support, and advocate for the vestibular community, and, friend, I know that you are too! Together, we can ensure that patients like Etrily receive the care and validation they deserve.

Etrily once had a successful career as a holistic therapist. She described herself as a workaholic, and says she loved helping people find health and happiness through changes in their lifestyle.

Etrily operated her business out of a five-star hotel. In 2004, while at work, she went to check on supplies in the stockroom.

Without knowing what happened, she awoke hours later in the hospital. Hotel staff said that a heavy metal ceiling tile had fallen on her head, causing a concussion. She couldn’t talk or feel anything from the neck down. “I was scared and confused,” says Etrily. “I didn’t know what was happening.”

The hospital did all the normal scans, which showed no abnormalities, so they discharged her, claiming that nothing was wrong.

But something was definitely wrong. Etrily couldn’t even walk out of the hospital, so friends had to carry her. That night she passed out and was brought to the emergency room, where they again declared her “well.”

In the years later, Etrily went from doctor to doctor, all while fighting to retain custody of her children. It wasn’t until she found neurologist Peter Harvey in 2009 that she was diagnosed with a vestibular disorder.

She became so ill that she couldn’t work. She finally obtained permanent disability, but it wasn’t easy. The medical advisor on her case reported that she was well-dressed and acted normal, therefore there was nothing wrong with her. Finally, she got a judge who understood vestibular disorders and granted her disability claim.

Then Etrily found VEDA. “VEDA gave me many tools and introduced me to people who are in the same situation,” says Etrily. “Others don’t understand that the days you’re down you can’t even brush your teeth, let alone take a shower.”

I am sure this is a sentiment which rings true to so many VEDA members. And that is why the heart of VEDA’s mission is supporting patients like Etrily, who are struggling and have nowhere else to turn.

Thanks to generous donors like you, VEDA is able to provide information to help vestibular patients like Etrily understand what they are going through, tools so they can cope, and a support network so they never have to feel alone.

Today, Etrily is a VEDA Ambassador, sharing her story to help raise awareness about vestibular disorders. “It seems unreal that a whole decade has passed by and I’m finally out of bed!” she exclaims.

I’m sure you can relate to Etrily’s story, and I hope that you, too, have found comfort and help through VEDA’s Community of Support.

You should be proud of what we have accomplished together! With your help, VEDA continues to expand our educational resources while also making great strides toward reducing diagnosis times through our advocacy efforts. Just this week our patient registry exceeded 500 participants, and medical advisors are analyzing the data so that it can be used to increase funding for vestibular research.

VEDA is succeeding in its advocacy work, resulting in greater knowledge about vestibular disorders and the impact they can have on patients.

We need your support now more than ever to build on this momentum.

Please, would you donate $25, $50 or $100 today so that vestibular patients around the world don’t have to suffer alone?

Donate Now

Your gift enables VEDA to:

  • Connect vestibular patients with specialized healthcare professionals
  • Maintain and expand a library of medically-relevant literature on a wide variety of topics related to vestibular disorders
  • Provide one-on-one support to vestibular patients seeking answers, and
  • Bring patients and healthcare specialists together to collaborate on ways to reduce the time it takes to diagnose a vestibular disorder.
Thank you for your support! You give patients like Etrily the chance to reclaim their life, and the reassurance that they are not alone.

– See more at: https://vestibular.org/Year_End_Campaign#sthash.g9CN2pHG.ejM5TGeL.dpuf,

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A life with An Invisible Illness.

Invisible illnesses are just as it sounds invisible, You can’t see them, no obvious symptoms to the naked eye.  That being said, living with a invisible illness is the hardest thing I have ever had to do.  Not only living with the daily symptoms, but living with the unknown.  Will I be able to attend the function on Monday?  Will I be able to drive to my Doctor’s appointment on Tuesday?  What if I get lost?  What if I have a attack?  What If I have a drop attack?  I always carry my medication with me and a bottle of water as if it were a security blanket.  Is it really going to help in this situation? No , but it makes me feel better.  I only will allow my self to drive 3 or so miles and I have to feel better than normal to drive, so its not on a regular basis, I have to have some one drive me places, which makes me feel bad.  My sensory system is in such overload, lights, patterns on carpets, wallpaper, crazy bright colors really bother me.  I can’t handle music even though I am deaf in one ear and going deaf in the other, it causes confusion in my brain.  A lot of people in one area cause confusion.  You loose friends and your co-workers or family members question your illness?  I have never actually wanted anyone to have my disease which is autoimmune disease, Vestibular dysfunction, deafness, fibromyalgsia, extreme fatigue.  But at the same time If they could experience it for one day, maybe they would understand.  Invisible illnesses are not easy to diagnose or treat and most are not curable, I use to hope this MRI is going to show a tumor that can be removed and I will have my life back and that is just not the case, I am meditating which can be a challenge in itself, with all the noise in my head and spinning, eye pain, ear pain.  It’s depressing, but I had to take a new approach to my disease and not let it define me, also had to think of this as a gift! Am I crazy?  Yes I look at this as a gift to understand what others are going through and trying to help them through there journey.  I know it sounds strange, Yes I wish I was healthy but until a miracle happens I can help others.  If any of you are dealing with this world, talk to me, I can try to help you if not support you in your journey.

Have a wonderful Saturday, Kelly

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Top Ten Facts about Vestibular Disorders.

Top Ten Facts about Vestibular Disorders
1.
The vestibular system includes the parts of the inner ear and
brain that process sensory information involved with
balance.
2.
Over 35% of US
adults aged 40 years and older (69 million
Americans) have had a vestibular dysfunction at some point in
their lives.
3.
Vestibular disorders can be caused by disease, injury, poisoning
by drugs or chemicals, autoimmune causes, traumatic brain
injury, or agin
g. Many vestibular disorders occur from
unexplained causes.
4.
Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation),
imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting,
hearing loss, anxiety, and
cognitive difficulties.
5.
Vestibular disorders are difficult to diagnose.
It is common for a patient to consult 4
or
more
physicians over a period several years before
receiving an accurate
diagnosis.
6.
There is no “cure” for most vestibular disorders. They ma
y be treated with medication,
physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
In most cases, patients must adapt to a host of life
altering limitations.
7.
Vestibular disorders impact patients and their families ph
ysically, mentally, and
emotionally. In addition to physical symptoms such as dizziness and vertigo, vestibular
patients can experience poor concentration, memory, and mental fatigue. Many vestibular
patients suffer from anxiety and depression due to fear
of falling and the loss of their
independence.
8.
Common vestibular disorders include benign paroxysmal positional vertigo (BPPV),
Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine.
9.
In the US, medical care for patients with chroni
c balance disorders exceeds $1 billion per
year.
10.
The Vestibular Disorders Association (VEDA) is the largest patient organization providing
information, support, and advocacy for vestibular patients worldwide
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New Jersey Functional Neurology Center with Dr Scopelliti

Brain Based Neurology

Brain Based Neurology

Treatment For Patients Suffering With Vertigo, Dizziness, Imbalance, Dystonia, Traumatic Brain Injury/Concussion, (TBI), ADD ADHD and other Neurologic and Neurobehavioral Disorders

Vertigo, although most commonly associated with inner ear disorders, has several causes including both vestibular, (inner ear), as well as central, (brain based).  Dizziness and dysequilibrium, (imbalance), are often seen as secondary effects of vertigo as well, associated with subtle changes in the brain, which we see in those afflicted with vertigo and dizziness.  Relief of vertigo symptoms depends on determining and eliminating the cause. Vertigo, dizziness and imbalance may be caused by a more serious condition that many health care providers can miss since they don’t treat neurologic and/or vestibular conditions on a day-to-day basis.  In the past, the standard medical treatment for symptoms of dizziness was the prescription of certain vestibular suppressant medications, such as Meclizine.  In the last ten years, the understanding of brain function has exploded.  The nineties have been referred to as “The Decade of the Brain.”  Brain based understanding as well as understanding of vestibular dysfunction, (vertigo and dizziness, presyncope, etc), has yielded extensive new therapies and treatments for resultant conditions, such as vertigo and dizziness, dystonia, as well as a multitude of behavioral disorders, such as attention deficit disorder, (ADD ADHD), dyslexia, etc.  It is now known that brain/vestibular dysfunction is is also intimately related to many conditions, including learning disabilities such as ADD ADHD, phobias, panic attacks and anxiety, scoliosis, movement disorders, including dystonia, Parkinson’s, Mild Cognitive Impairment, essential tremors, etc., and brain injury, (TBI, MTBI), as well as vertigo symptoms and symptoms of dizziness, disequilibrium and other disorders of imbalance, which predispose increased and premature fall risk associated with imbalance.

The resultant development of new protocols in diagnosis and treatment primarily of brain based disorders, such as vertigo and dizziness, dystonia, etc., continue to be developed today, and many focus on accepted understanding of central control mechanisms of the brain involved in movement, balance, and postural stability.  Our unique approach to treatment incorporates functional integrative neurological and neurodevelopmental rehabilitation. Dr. Scopelliti credits his success with these more exotic neurologic and neuro-otologic conditions to his in-depth diagnosis and conservative treatment protocols which diagnose the true cause of the patient’s symptoms, (like vertigo and dizziness), then treat properly to provide as much long term relief as possible.  Our brain based treatments provide brain fitness peak performance by exploiting concepts of neuroplasticity which were concluded to be possible in the 90’s.  Neuroplasticity is a concept of neuronal regrowth and replication, which for centuries has been thought to be impossible.  We now know that it is not only possible, but that it is in fact how the brain works.

Monmouth Functional Neurology Center Video

Functional Neurology on ABC News

This recent ABC News piece examines the myriad of successes which patients have found through FunctionalNeurology.

Hope Restored –  What is Functional Neurology

Out of State Patients

Because of the high level of specialization and success of our practice, we routinely see patients from out of town and from out of state suffering with untreated complex brain based disorders such as vertigo, dizziness, dysequilibrium, dystonia and traumatic brain injury, (TBI).  If you are coming to see us from out of state, you can find a local hotel to make arrangements at by keying in the phrase “hotels in Long Branch NJ” into Google map search box, or, your favorite mapping application.  You can find the local map of our office on our Directions page.  This will bring up several local hotels and their contact information.  We typically advocate spending the week as you will be seeing the doctor daily.  Please call our office for any assistance which you may need regarding a hotel stay or transportation.

The following are representative of the types of conditions for which we routinely see patients in our office:

“Learn To Live With it” or, “Your Problem Is In Your Head” Patients

This is the vast majority of our practice, comprised of patients who have been to specialist after specialist, had lots of tests, are not getting better, and are told simply to “Learn To Live With it”  or, “Your Problem Is In Your Head”.

Imbalance And Balance Disorders

Vertigo and Dizziness, Pre-syncope, Balance Loss or Dysequilibrium, Fall Risk.

Dystonia And Movement Disorders

Dystonia, Torticollis, Ballismus, Tremors, Parkinson’s.

Traumatic Brain Injury

Mild Traumatic Brain Injury, (MTBI), Post Concussive Syndrome, Seizure Disorder, any Closed Head Injury, Motor Vehicle Accident Injuries and other Accident Injuries.

Headaches

Migraine & Sick Headaches, Tension Headache, Post Traumatic Cephalgia, Cluster Headaches, Head & Face Pain, Vestibular Migraines.

Behavior Disorders Of Development, ADD ADHD

Child Neurobehavioral Disorders, Neurological Developmental Delay,  Tourette’s & Motor Tics, Learning, and Behavioral Disorders: ADD  ADHD, Autism, Asperger’s, Tourette’s, Obsessive Compulsive Disorder; OCD,  Child Coordination Disorders, Child Postural Disorders including Scoliosis, Ocular Palsies such as Lazy Eye, etc.

Most Brain Based Disorders

Stroke, (CVA), Tinnitus, Panic disorder, Vasovagal Presyncope, Seizure Disorder, Pain, Pain Syndromes, Nerve Entrapment Syndromes of Arm & Legs, Sensory Processing Disorders, Communicative Disorders, Cerebral Palsy, Seizures, Enuresis, etc.

Pain

Neck pain, mid and lower back pain, complicated with arm and/or leg pain, or, uncomplicated.

Patients Not Responding To A Care Plan

Patients who have been treating for one to two weeks and are not improving or are worsening.

Independent Evaluations Regarding Appropriateness Of Care

Patients who have been inadvertently cut off from care either by peer review or IME, which appears to be biased and not representative of the patients actual status.

Other Scenarios Such As Athletic Enhancement In Timing And Coordination

Our office is a fully established balance center focusing largely in the primary treatment of patients with vertigo, dizziness, dysequilibrium, (imbalance & fall risk), dystonia and ADD ADHD.

Use the navigation links on the right to seek out relevant content for vertigo and dizziness, dysequilibrium, imbalance and fall risk, dystonia, MTBI, headaches, and ADD ADHD.

Dr. Scopelliti is a Functional Neurologist in Monmouth County NJ.

 

 

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Bono, we need your help.!!!!!!

Celebrity is currency, so I wanted to use mine effectively”- Bono

Bono we really need your help…..

We are speaking on behalf of the millions of people, worldwide, who suffer lifetime’s filled with constant ‘vertigo’ from a little known and very misunderstood disease, known as Meniere’s disease.

Meniere’s disease steals lives, leaving those unable to function as they once did. Many sufferers are reduced to bystanders to their own existence, unable to work, drive, attend family gatherings, or simply play with their kids. Meniere’s causes dizziness, severe vertigo, tinnitus, sensitivity to light and sounds and other normal everyday activities. Meniere’s attacks leave their victims so dizzy and unable to walk or balance, with even the slightest movement bringing hours of nausea and vomiting. If that wasn’t enough, most Meniere’s sufferers develop hearing loss and many go completely deaf.

In the research paper “Impact of Meniere’s Disease on Quality of Life” by the University of California at San Diego, researchers found that the quality of life of Meniere’s patients, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. They further discovered that during periods of ‘acute vertigo’ their quality of life dropped to a point that Meniere’s sufferers were on par with non-institutionalized Alzheimer’s, Cancer and AIDS patients six days from death. Yet, Meniere’s remains relatively unknown and dramatically underfunded when it comes to research dollars.

This is why we are respectfully asking you Bono, and your U2 band mates, to read the thousands of heartbreaking comments below from the petition supporters and consider helping us to ‘raise awareness’ about this debilitating disorder. We are asking for a simple (filmed) statement before you sing your song, “Vertigo” during your 2015 concert tour: “We need to find a cure ‘now’ for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s disease” or a similar statement would be wonderful.

Or, if more acceptable, a public service video made by yourselves for ‘you tube’ that addresses Meniere’s disease helping to spread awareness and hopefully increasing research dollars that will provide better treatments and ultimately a cure.

 

Please do this ‘for us’ and thank you!

 

 Supporters:

Dr. Jose A Lopez-Escamez MD PhD

Our Meniere’s Awareness petition has received the support of the prominent Meniere’s researcher, Dr. Jose A Lopez-Escamez who’s research team in Genyo, Granada, Spain has identified the  ‘first genes’ causing familial Meniere’s disease. We welcome Dr. Lopez- Escamez’s support and commend his work, which brings those who suffer from Meniere’s disease, one step closer to a cure.

For more information regarding the work of Dr. Jose A Lopez-Escamez MD PhD at the University of Granada · Otology & Neurotology

http://www.genyo.es/en/content/view-research-group?id=5

http://www.genyo.es/en ;

The Vestibular Disorders Association

VEDA’s Mission is to inform, support, and advocate for the vestibular community. VEDA envisions a global community where vestibular disorders are widely recognized, rapidly diagnosed, and effectively treated. VEDA recognizes their responsibility to be a champion for the vestibular community and to achieve measurable results. VEDA serves all people with vestibular disorders with dedication, understanding and compassion.

http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders

 

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