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vestibular disorder

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Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, a functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder, however, shows no signs of structural abnormalities but is rather a problem with how the brain functions.

It is a problem with how the brain is sending or receiving messages.

If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however, there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.

As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.

And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger to having been through it several times before.  I am not sure how I feel about this, initially, I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially skeptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences, however, I have learned that even after getting a label, diagnosis is not the end of the story…

Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin
Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

Infographic_final

There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

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In the madness of the Writer’s Challenge that I have been taken part in that I have forgotten to mention that a very special friend of mine who has her own blog is completing a special project for her blog abledis.com.   Marissa, like myself suffers with chronic dizziness, and was diagnosed with a debilitating vestibular disorder and set up her website “with the intention of documenting my life living with a hidden disability”.  For those who aren’t familiar with vestibular disorders, they are defined as:

“…a disturbance that causes an individual to feel unsteady, giddy, woozy, or have a sensation of movement, spinning or floating.  Balance is the result of several body systems working together: the visual system (the eyes), vestibular system (the ears) and proprioception (the body’s sense of where it is in space).  Degeneration of loss of function in any one of these systems can lead to balance deficits”

The project is called ’12 Months, 12 Journeys, 12 Lessons’ and where she is educating herself about a different medical condition each month.  So far, Marissa has featured spinal muscular atrophy, budd-chiari syndrome and multiple sclerosis.  And this month I and my condition, long-standing brain stem lesion and spastic paraparesis is being featured.  The page featuring me, with a list of the posts related to my condition, can be found here:

http://abledis.com/12-12-12/rhiann-johns

As part of this incredible project, I will also be taking part in a podcast interview with Marissa which will be available to listen to near the end of the month!  Each month Marissa is truly being an advocate for the project member and the condition being featured by wearing a t-shirt and a wristband to various medical appointments to show her support and raise awareness for the cause.  As you know, my condition is very rare, and so were no organisations or charities that we could find to reflect my condition, so Marissa had a t-shirt made instead! And somehow, we were able to find a website that had wristbands (silver) to support various brain disorders. Here they are:

Anyway wanted to let you all know about this incredible project, and I hope you all support Marissa and all of her hard work by visiting her website and having a look around and learn all about her health condition as well as those project members being featured.

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