A Pain in the Neck

One of the side-effects that crept up on me was a nerve problem in my upper spine that was a direct consequence of my keeping my neck still and stiff in order to control my balance when walking.  Over a period of time this lack of movement and, indeed, the physical effort required to keep it still, actually compressed a specific nerve, causing me no end of problems and a fair amount of pain in the end.

I realised – too late – that this same issue was one of the things causing my tension headaches and, of course, the muscle tension in my shoulders and tingling in my arms.

A physio explained to me how I'd caused this, and that I needed to carry out a set of exercises that would initially resolve the nerve problem, but would, if continued, help keep it at bay.  Of course, when you're pain free it's really easy to forget these exercises, and I've subsequently had the same nerve issues a few times.  I have to say, though, that the exercises I was given start to help immediately.

I am convinced that, had I been aware of this potential side-effect, I would not have had the nerve damage, because the exercises when I remembered would prevent it from becoming that severe in the first place.

So, to anyone who thinks they might be having or could have the same issues, the following link demonstrates the exercises really well.  Ignore the bit that mentions dizziness – you may well get dizzy, and I'd advise closing your eyes when you do them as they can be done sitting down.

http://www.thephysiotherapysite.co.uk/physiotherapy/exercise/simple-neck-exercises

Hopeful Hearing

I have been experimenting with hearing aids for a fortnight now.  Having given up on ENT ages ago, but having been troubled with my hearing and tinnitus recently, I went for an assessment and the audiologist was simply wonderful: she had taken time to look at my notes ahead of time and didn't spend half my appointment referring to them; she actually listened to me rather than talk at me; she knew about MD, she understood what I was going through; she took time to ask relevant questions.  Believe me, that's a first in the 10 years I've had this condition.

So, whilst I do have some shockingly low levels of hearing at one end of the spectrum, the hearing aids are mainly to see if they will help dull the impact of the tinnitus which has, frankly, made me very miserable these past few months.

The first few days were blissful.  I had no physical issues with the ear buds, the amplified hearing took a bit of getting used to, but it was great.  And best of all, the rushing and roar of my tinnitus was considerably dulled.

I had expected any problems to emerge in the first few days, but actually they started appearing as time wore on.  First, the amplified sound suddenly became a bit overbearing.  Despite turning down the volume, everything seemed harsh and 'scratchy'; then the tinnitus found a way to combat the benefits being offered and now seem as bad with the aids as without; and finally, my ears seem to be staging a rebellion against the little plastic ear buds and are becoming increasingly irritating and even painful.

Perhaps this is all part of the process, so I'm sticking with it, and will try to explain all this at my follow-up appointment.  It's just a bit disappointing after such a positive initial reaction.

In the great movie The Shawshank Redemption, Andy Defresne writes to his friend, Red: 'Hope is a good thing. Maybe the best of things.'  When it comes to this, I'm not sure I would agree.

Brain Foggy Day

The following is a transcript of a lecture by Kenneth Erickson, M.D., at a VEDA conference held in Portland, Oregon. 

'Patients and families, of course, have known for a long time that vestibular disorders bring about cognitive difficulties.  Some psychologists and neurologists here in Portland for at least five years, crystallizing in the last two or three years, have now begun to recognize and study a number of cognitive disturbances associated with vestibular disorders.

Cognitive disturbances involve a difficulty in basic mental operations such as memory, paying attention or focusing attention on something, and in prolonged concentration. They also involve shifting attention from one subject or idea to another.  People with cognitive disturbances have trouble in perceiving accurate spatial relationships between objects, in comprehending or expressing language, and performing calculations, and in a number of other areas.  These are areas that psychologists routinely test when they are doing so-called neuro-psychological exams.

A brief run-through of the kind of cognitive dysfunctions that we know of in vestibular disorders would have to include the following areas: 

First of all, vestibular patients exhibit a decreased ability to track two processes at once, something we usually take for granted.  This ability requires a rapid shifting of attention.  A good example is when you are driving and you have one person approaching unexpectedly coming out of a left-hand lane and another car coming behind you unexpectedly on your right side.  Suddenly there are two things that you need to monitor and pay attention to at the same time.  This might have come easily to you at one time, but if you now have vestibular difficulties, it's very hard.

Another example is when you have conflicting emotions inside of you, if, for example, there are two different things you want to do at the same time.  The sensation you feel is confusion.  Because of your cognitive problems, you may find it very difficult to express that confusion.

These are only two concrete examples of a pervasive problem.

The second area of cognitive problems vestibular patients exhibit is difficulty in handling sequences.  This includes a wide range of sequences.  It pertains to the mixing up of words and syllables when you're speaking, to the transposing or reversing of letters or numbers, to having trouble tracking the flow of a normal conversation or the sequence of events in a story or article.   All of those have been very frequent complaints of the vestibular patients that we see.

A third area would be decreased mental stamina.  That speaks for itself.  For a vestibular patient an hour or two of concentration is a special blessing, and most days 15 minutes of intellectual concentration is very fatiguing.

The fourth area involves decreased memory retrieval ability, the ability to pull out information from your long-term memory store reliably.  You might hit it most of the time, but you do not have a reliable rate.

Number five is a decreased sense of internal certainty.  This is a peculiar way to state it, but it is exceedingly accurate.  Vestibular patients with on-going physical problems have a frustrating lack of closure. They lack that "ah-ha; I've got it now; I see the big picture."  Or "that's what I was trying to remember; I know it's that."  They lack that kind of certainty which measures an idea or a conversation or a social situation up against some internal "gold standard."  Vestibular patients often lack internal certainty. 

Finally, people with vestibular disorders experience a decreased ability to grasp the large whole concept.  The ability to see the big picture or the forest for the trees is very elusive for someone with vestibular disorders.'

That was only part of a much larger talk, but I felt it was worth putting up that slice of the whole transcript.

I guess this is the 'brainfog' we're all pretty familiar with.  It's nice to see the condition acknowledged by a medical expert, because literally no medical expert I have spoken to was aware that such a thing came with the whole MD package.  Come to that, none were aware it caused physical fatigue, let alone mental exhaustion.  So many of them focus on the triumvate of vertigo, tinnitus and hearing loss trees that they cannot see the sub-symptoms woods; the symptoms that come about as a consequence of the condition in its entirety.

A Day in a life...

What follows is a snapshot of thoughts published by various MD sufferers, including myself.  I apologise for not being able to name contributors, but I feel that sharing these thoughts may help non-sufferers appreciate just a little bit more what this whole MD thing is all about.

Life with Meniere's Disease: Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus - imagine having a headache caused by a fire alarm ringing or a swarm of bees buzzing in your ear continually for a long period of time, or imagine the sound made by feet trudging through crisp, fresh snow, or an ultrasound in full swing.  You can't hear anything but those damned noises  - It drowns everything else out.

Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off.  Now imagine that with these two things, you'd be dumb enough to get on one a roller coaster ride or one of the amusement park rides that spin in two different directions at the same time.  I'm not that dumb, but unfortunately I have no choice in feeling these sensations.

While playing havoc with your balance and equilibrium, this disease also wreaks havoc with your hearing.  The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.  I may not be too bad now, but only because of a PermaVent in my ear.  What happens when I can no longer have a tube, or it becomes ineffective?  You can't help but wonder.  You can't help but worry.

On a daily basis, your brain is so confused by the signals it's getting from your ears that your balance is all over the place.  You run into things constantly because you can't balance well enough to avoid walking into them, or your mind is telling you the object is a couple of inches from where it really is.  You have to laugh when someone teases you about being such a clumsy sod, but it kills you a little inside every time it happens.  There are times when I could make Mr Blobby look graceful.

I also have days that my coordination just doesn't seem to be together.  I'm carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body.  I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realise they are there.  Apparently this happens because the part of your brain that recognises parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don't seem to have a hearing loss in can sound extremely loud, unbearably so.  I go from being unable to hear, to something quiet seeming incredibly loud – and all within the same few minutes.

The disease also plays tricks with your vision.  For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement.  Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times.  Your eyes tend not to be able to "track" movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren't reliable.  It's what some people with the disease refer to as "brain fog".  Many of them originally were afraid that they may have a brain tumour or Alzheimer's because it can sometimes gets so bad.  Finally they find either a doctor who is very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.  An MRI is usually given to rule out a tumour.

All this activity results in fatigue.  Incredible, mind-numbing, bone-weary exhaustion. You can hardly lift your head off the pillow, let alone your body from the bed.  Walking seems almost impossible, as if your feet are deep in thick treacle.  The fatigue makes you feel even worse physically, and mentally you feel as if you can't focus on even the benign, minor things life throws at you.  Fatigue, over a period of time, becomes as debilitating as the main symptoms themselves.  And it's a fearsome combination.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, disequilibrium, or "brain fog" is going to hit, or how bad it will be.  At least with being drunk or riding an amusement park ride, you know what's causing it, and you can make the choice not to do it again.  With this disease, there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure – the final depressing fact.  And facing up to this while you are physically and mentally impaired is no fun, believe me.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere's for many sufferers.  We often ask how much worse can this disease get?  For some strange reason, doctors aren't very willing to give out worst case scenarios.  We hope for relief, yet suspect there will be none.

On my not-so-bad days I may look like a healthy, able-bodied person.  But I am ill every day – there are just varying degrees of that illness.  You have to realise that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.  It's a vicious circle, and it spirals only downwards.

So, please, don't judge me unless you've walked in my shoes.

I have what?

Be honest, how many of you fellow sufferers had heard of Meniere's Disease before you were diagnosed with it?  I certainly had not, and now that I have lived with it for the past decade, I suppose it's easy to understand why.  If even our doctors and ENT consultants don't fully understand the disease, how can we expect anyone else to?  And if you can't understand it, if you can't empathise or sympathise with MD sufferers, if you have no real appreciation of how cruel the disease can be and how much of an impact it can have on the lives of those who have to live with it, how can you support it in any recognisable way?

My story is commonplace, yet it is also remarkably individual.  I share symptoms with my fellow sufferers, yet I suffer in my own way.  If it were not for the knowledge that many other people have my disease I could be driven mad, yet that knowledge does me no practical good whatsoever.  We are bound for similar destinations, yet we travel vastly disparate routes.

A word I seldom see on MD forums is 'frustrated', yet I believe this word would most accurately describe how each and every MD sufferer truly feels.  Frustrated at having the wretched disease, frustrated at seeing no potential cure, frustrated at the lack of doctors and ENT consultants with real expertise, frustrated at the lack of guidance provided by the medical profession, frustrated at how non-sufferers cannot understand how we feel, frustrated at how cynical people are when we try to reveal the depths of the suffering, frustrated at the impact MD has had on our lives.

This is me: initial episodes of vertigo have reduced in both frequency and potency of attacks since the first wave, but they are still there lurking in the shadows; tinnitus has increased from a constant single high-pitched whistle, to several very different sounds, from something like footsteps trudging through crisp snow, to a print machine thumping our the latest edition of SPIN; hearing loss, 'fullness' and ear pain has fluctuated with the insertion of grommets; imbalance, or 'giddiness' has increased from the odd attack every few days to a constant sensation 24/7 that ranges from a mild sensation of instability, to full-blown drunken, 'dressage stage', shambling and stumbling; the result of walking differently in order to compensate has brought on a persistent bad back and aching legs; sitting or walking 'rigidly' has resulted in daily severe headaches and a compressed nerve in my spine; I can only sleep if I have taken a sleeping pill; and the overall impact on whatever is going on due to the breakdown in communication between my eyes, ears and brain leaves me feeling physically and mentally exhausted and completely drained.  This induces the delightful 'brain fog' we are all familiar with.

That's the physical side.  Here's the emotional and psychological side: I have lost any measure of confidence I once had; I am rarely able to see family or friends unless they visit me; despite having revised my working conditions, I live in fear of losing my job; despite having an extremely supportive wife, I agonise about my condition because it has changed her life as well as mine, and there is a sense almost of mourning for what we once had.

I know there are people worse off, you only have to look at the wonderful PostPals website to know that and to give thanks that you do not suffer to the degree to which so many of those poor kids do.  So yes, I know life could be worse.  But that doesn't stop me from wishing it was as stable as it used to be.  I'm only human, after all.  I believe I've tackled this illness in a positive way, but I still feel as if I've lost the person I was and the life I should have had for the past ten years.  I'm not the kind of person to ask 'Why me?' because I've seen enough disabled children to know that such a question is futile.  In reality, you have to think 'Why not me?'.  And then you have to cope.

Even within the ranks of my fellow sufferers I am grateful that I do not experience the lives some of them have to endure.  I accept that my hearing is going, and that it is now going in both ears, and I have to prepare myself for that to be more acute at some point; I accept the 24/7/52 nature of my imbalance, and I have to manage that and again prepare myself for the fact that age can only worsen this aspect; I accept that, no matter how well I manage my condition, every now and then a major and violent spin will catch me out, and I just have to hope that the worst thing my head strikes as I fall is my wardrobe (the wardrobe seems to attract me like a magnet); I accept that with a chronic, progressive illness there is every chance that it will continue to get worse, but I must live in hope that it finds a level before it takes away even more of my life.

As for the future...well, I have to say I don't worry about that anymore.  I have learned that the best way to cope is to take life day by day, to manage the things within my control.  The future is not.  I hope that I am now at the point where I can meet with triumph and disaster and treat those two imposters just the same, as Rudyard Kipling suggests.

Humble Beginnings

In July 2002, at the age of 44, I was attacked out of the blue by severe, ripping pains down the right side of my head.  This had followed a short period of feeling a little bit 'woozy'.  Because I'd had a lengthy period of pressurised work and was now taking a holiday, I dismissed it as a reaction to the stress.  However, as the pains continued and the 'wooziness' became more pronounced, I sought help from my GP.  Whilst her initial reaction was to suggest stress as a likely culprit, she nonetheless contacted my local ENT for an appointment.

Following a hearing test and a brief consultation, an MRI was ordered.  Of course they tell you it's standard, but of course you worry that they might find something awful in there.  To my surprise, they did find a brain, and fortunately nothing else.

There followed a year of periodic ENT visits for a variety of tests.  During this time, the occasional severe headaches had been replaced by constant nagging ones, I'd had several bouts of vertigo, I felt my balance out of whack a couple of days per week, my hearing became worse, and my tinnitus had me climbing the walls.  Eventually, following a second caloric test, and almost 18 months after my first real attack, I was diagnosed with Meniere's.  Whether Disease or Syndrome, or A-typical, they weren't quite sure, but either way I was dismissed with the kind and caring words: "You'll just have to learn to live with it."  Just the sort of thing you want to hear when you've just been told you have a 'chronic, progressiv eillness with no cure'.

In the early days I became a walking zombie due to lack of sleep, so in January 2003 I had my first ever sleeping pill.  I also started on SERC.  Ten years later I'm still taking both.  Everything I ever wanted or needed to know about MD I found on websites, forums, and the wonderful sheets provided by the Meniere's Society.  I must have encounted a dozen consultants or registrars along the way, and have yet to find one who was remotely useful or had any in-depth knowledge of what it was really like to live with this condition.

I get fewer attacks of full-blown vertigo these days, but they still do sneak up on me from time to time.  I've fallen – or 'dropped' – a few times, but usually only after I've exerted myself without caution.  At the moment I'm able to drive because I don't get attacks without warning while I am sitting down.

Hearing improved somewhat with a grommet – I now have a long-term T-Tube, but have been warned that there may come a point where a grommet is no longer an option, I fear for my hearing then – and the tinnitus still drives me crazy.  But for me, the main concerns are the imbalance, which is now a daily issue at varying degrees, plus the fatigue, which leaves me feeling exhausted and both mentally and physically washed out.

I live in hope of remission, but in fear of further worsening.  I live in hope that I will improve sufficiently to improve my ability to work until I am able to retire, but in fear of losing my job.  These issues, plus the fatigue and sense of loss, all add stress – which of course is yet another trigger.  Depression and a sense of helplessness creep in, and every time you have to cancel a night out or a day somewhere or a holiday, you feel as if the bloody disease has taken yet another bite out of you – or at least what you were.

Yet you have to try and be positive, if only for those around you.  Laugh at your clumsiness, forgetfulness, use the lack of hearing to your own benefit, and generally try to stay on top of it, rather than let it dominate you.  It’s not easy, but few worthwhile things are.  People say it's like a kind of grief, where you mourn the loss of who and what you were and the life you once had.  I have reached the acceptance stage, and have learned to embrace the good days.

Baby steps is what it's all about.  But as for 'what doesn't kill you makes you stronger', I'm not sure I'm that much of a 'glass is half full' person.