Tag

vertigo

Browsing
In Chronic Illness

Hospitals, results and losing hope…

No Comments

Hello to all my readers

Sorry that I have been quiet recently and a distinct lack of posts from me.  Recently, I have been struggling with fatigue, and as well as this have had several hospital appointments which follow the appointment with a consultant specialising in audiovestibular medicine.  For those who do not follow my blog, or who do not know what audiovestibular medicine is, it is a branch of medicine which specialises in the diagnoses, medical treatment and rehabilitation with disorders of hearing and balance.  Doctors who specialise in this area, concentrate on patients with a variety of different problems including dizziness, hearing loss, tinnitus, speech disorders and abnormalities in eye movements.

My first appointment with the registrar back in November, revealed a problem mentioned above.  He noticed that whilst following his pen with my eye, there was a slight delay with my movements which indicated a neurological problem.  The doctor referred me to have some balance tests conducted to determine whether the dizziness is due to a vestibular dysfunction (inner ear disease) or not.  Here is a video which outlines the VNG test:

The test, which happened a fortnight ago was not pleasant and afterwards the dizziness was worse.  Last week, I returned to the hospital for the results…

During the consultation last week, I was asked to perform a test was I was not able to perform the previous week during the VNG test.  This test is known as the Diz-Hallpike test and involves the patient lying on a table with the head hanging over the end of the table. The doctor will then turn your head 30° to 45°.  The doctor during the test will watch your eyes for involuntary eye movements known as nystagmus.   The timing and appearance of the vertigo and nystagmus determines whether the vertigo is caused by an inner ear disorder or the brain.

After completing this particular test, my parents and I were taken back to the consultant’s room and were unfortunately informed that an inner ear disorder have been completely ruled out, and that there were some abnormalities during some of the tests which indicated a  problem with the central nervous system, i.e. the brain.  We were also informed that there is little that can be done, and although they are sending me to a rehabilitation therapist to learn some exercises to try and ease the severity of the dizziness, the consultant was not confident that they would help.

This was obviously not the outcome that we were hoping for.  It is not the first time that I have been told my a medical profession that the dizziness is very likely caused by a neurological condition; and it is not the first time that it is not anything that they can do to treat the dizziness – however, every time that I hear these words, it is like hearing them for the first time, even after accepting them after a previous appointment.  In addition, after repeatedly hearing that the dizziness is a life-long symptom that I will have to deal with, a little part of me still gets extremely upset and despondent.  I have always realised that the dizziness is very likely a neurological problem, and very unlikely to go away but after having it confirmed after various hospital appointments is still feels as if the small glimmer of hope that is inside of me becomes extinguished after hearing those words again and again.

Living with the dizziness, is like living with a permanent shadow following and lurking behind me wherever I go.  Always present and ready to strike at anytime. The dizziness at present is constant, as well as being severe and at times debilitating and coming to the realisation that it is life-long is a hard concept to get my head around and even harder to accept.  There are a number of people that has told me to hold onto hope that there is someone out there who could help me and that there is something that can be done – however the question is; is it wise for someone with a chronic illness after being told that it is a life-long condition to hold onto hope that a cure is out there?  Is holding onto such hope, only going to lead to more heartache and upset? Is it best however, to accept the reality as it is, and move forward with your life as the best you can despite the limitations that the chronic illness places upon the life of the sufferer?  As Joseph Campbell said “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”.  So, does keeping hold onto hope of some kind of cure, stops us from living the life that we may have not planned, but our new reality?

Do I go in hunt for a cure for the dizziness, which may not even be out there? Or do I simply learn to live and accept the dizziness as a constant part of my life.  It is very hard to accept that this dizziness may never go, and honestly it has really knocked my confidence on going out, but more importantly on going on our cruise in May.  If the dizziness is this severe then, how will I ever be able to enjoy myself?  Will I be able to cope with the dizziness whilst on holiday?  These are the questions that are currently running through my mind.

Simply losing hope but attempting acceptance…

by
Keep Reading
In Chronic Illness

Think you know my health condition? Then can you spot the incorrect statement…

No Comments

nhbpm_daycount-18

 

Welcome to the eighteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life.  Now tell us a lie.  Do you think we will be able to tell the difference?

 

So, you think you know my health condition?  Let’s see!  Can you spot the incorrect statement from the four statements below?

  1. The dizziness that I experience is constant
  2. The spastic paraparesis only affects my legs
  3. Both hot and cold weather affects my legs
  4. The vertigo is triggered by visual disturbances

Do you know which is the incorrect statement?  Choose which one you think the wrong statement is in the poll below and I will reveal the answer tomorrow!

 

 

by
Keep Reading
In Chronic Illness

Alternative Medicine

No Comments

nhbpm_daycount-10

Welcome to the tenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Alternative Medicine: Write about alternative treatments and regimens and tell us how you feel about them.  What do you support?  What is crazy? Have you used any? 

As my condition is neurological, and the dizziness is looking like it is being caused by a problem between the signals between my brain and eyes, then I am not so sure that alternative medicines would really work in my particular case.  I would not say that I think the idea of any alternative therapies however is ridiculous; if a person finds something that works for them and helps them to feel better in a world of chronic pain or illness, whether it be conventional medicine or alternative medicine than I think a person should be free to choose whatever works best for them.

Admittedly, when the anxiety and dizziness first started to become a major problem and an obstacle that impacted on my everyday life, I did try Chinese herbal medicine after someone recommended it to by Mum – sadly it didn’t work for me, but it wouldn’t stop me from trying it again for some other ailment or even recommending it to someone else for them to try – after all, our bodies are different from person to person and one treatment which works for person A, will not however work for person B.  I did however find that aromatherapy helped somewhat with the anxiety, and using lavender on a regular basis helped me feel calmer and less nauseous. I have just bought a little wheat bag and have hung it my bed to help send me to sleep, even when the dizziness and pain is stopping me from doing so, and has found that it has been doing the trick!

 

BYtvSQzIgAAcRzg
My little lavender what bag – hung by my bed and complete with a little dachshund to remind me of Honey

 

Last week, I had a flare of my IBS symptoms, with bad cramping in my stomach, and a great friend suggested drinking peppermint tea.  I found that it instantly calmed my IBS symptoms, and the cramping instantly eased.  So although alternative therapies may not solve the entire set of symptoms caused by my neurological disorder, at least I have found something to help during flares of IBS.

 

Peppermint tea does wonders for my IBS symptoms
Peppermint tea does wonders for my IBS symptoms

 

As a lot of you may know that my symptoms such as the pain and trembling in my legs as well as the dizziness and vertigo has started becoming worse of late, and a few people have suggested alternative treatments such as seeing a Chiropractor or perhaps even attempting acupuncture.  Although I am not closed off from trying alternative forms of treatment, I think one of the worries of such treatments is the cost.  In Wales, receiving prescriptions is free, however alternative treatments are not offered on the NHS, and can be very costly.  For example, a friend of mine was spending approximately £90 a week on sessions with a Chiropractor, and perhaps one of the worries is the financial implications on using such treatments especially if they fail to work.

Next year, I am going on a cruise with my parents and am aware that they offer treatments such as acupuncture on board the ship that we are going on; perhaps I will give it a try – after all, isn’t one of the benefits of going on holiday is to try new experiences?

But for now, perhaps I shall stick to my own personal alternative regimens that for most part ease my symptoms, such as wearing a hat when out in my wheelchair.  I have found doing this ease the dizziness somewhat; blocking the visual stimuli that can make the dizziness worse, or even trigger an episode of vertigo.

One thing that living with chronic illness has taught me is that whatever helps us live with such debilitating symptoms or even eases them, then we should take full advantage of, however crazy they may appear or even what other people think…

Would love to hear your thoughts on this subject!  Have you tried any unconventional or alternative treatments in your quest to feel normal in the chronically ill world?  Feel free to post your stories and comments below…

by
Keep Reading
In Chronic Illness

My condition sends me in a spin!

No Comments

nhbpm_daycount-03

 

Welcome again to the third post for the National Health Blog Post Month hosted by WEGO Health. Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based upon given prompts provided by WEGO Health.

Today’s prompt reads:

My Mascot! Give your condition, community or self a mascot.  Who is it?  What do they represent?  What is their battle cry?

To represent my condition in the form of a mascot, I have chosen to represent it using an inanimate object instead of a person or animal.   I have decided that the mascot for my condition will be a spinning top.

imgres

The world due to my condition is constantly moving ; and very regularly the dizziness becomes severe vertigo sending my whole world in a spin.  The room spins so fast, just like the spinning top.  A perfect representation of how my condition affects me everyday.

However, it is not only the dizziness and vertigo that affects; as regular readers of my blog would know that the condition also causes weakness in my legs which often results in my legs giving way from under me.   The spinning top also can represent this part of my condition as the spinning top falls after it stops spinning;  Falls, like those that happens to a spinning top after it stops spinning is a constant part of my life; my legs will suddenly collapse from under me, causing a fall to the floor!

Now, there is much more to my condition such as the fatigue that I constantly experience, or the visual disturbances but just like any mascot that I could have chosen could not have represented every facet of my life with this condition but I wanted something to represent the symptoms which  I consider to be the biggest challenges that I face daily due to the condition which I live with.

If you could represent your condition with a mascot, what would you choose?  Let me know your thoughts!  Feel free to comment below…

by
Keep Reading
In Chronic Illness

Becoming Visible in an Invisible World…

No Comments

 

Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair
Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

by
Keep Reading
Pin It