Friday 21 November 2014

BDA launches the #FindYourBalance Challenge!

 
 
As part of our efforts to increase the awareness of Balance Disorders, BDA has decided to launch a fun campaign challenge called #FindYourBalance.  It's something you can easily do and pass across to everybody you know to get involved. This will help us spread the message that Balance Disorders are real and not just mere talk.
 
 
WHAT YOU HAVE TO DO: Record a video of yourself spinning a few times and then trying to walk on a straight line right after. Trust me, it's not as easy as it seems! That effect of dizziness and drowsiness you feel after spinning, is the constant feeling sufferers of balance disorders go through everyday! Yes, It is that serious!
 
You could also do it in pairs or in groups. Get your friends or family members, hold hands and spin in circles for as long as you like and then try to walk in a straight line. Let's see how easy it would be to do that.
 
Don't forget to, in the start of the video introduce what you're about to do and why you're doing it. Here's an example: "Hi, I'm Grace and I'm about to do the #FindYourBalance challenge to help spread awareness of Balance Disorders. I nominate (you could nominate anybody you want)"!
 
Make your own video, post it on any social media platform you're involved in (twitter or facebook)  and tag @BDA_Campaign (Twitter) / Balance Disorder Campaign (Facebook ) in it! Don't forget to include our hashtag; #FindYourBalance, in your post. We'll be sure to repost them!
 
Please spread the word around. Get your friends and family doing it and don't forget the reason why were doing it! #FindYourBalance!
 
 

Saturday 15 November 2014

'My vision seemed to disconnect from my body - as though they were working separately"- Carmel O'toole

 
 
BDA spoke to another balance disorder sufferer, Carmel O'toole, a 51 year old Senior Lecturer at Sheffield Hallam University and this is what she had to say;
 
 

 When I first experienced any symptoms;

 
I was on a Mediterranean cruise four years ago in Marseille, walking up a steep hill to the Cathedral de Notre Dame and noticed I was feeling as though I was going to fall off the edge of the hill from dizziness. I was feeling like the ground was moving below me. It was very frightening at the time as it was a sheer drop over the mountains into the sea.

 

 

The symptoms I experienced;

 
 My vision seemed to disconnect from my body - as though they were working separately and I was vaguely dizzy the whole time and you literally cannot think straight. It affects your cognitive ability, which for a lecturer is not easy to manage.
 

Balance disorder I was diagnosed with;

 
Labrynthitis - which is a vague diagnosis that can cover a broad spectrum of symptoms. At one point I was also told I might have Menieres Disease which is more serious.

 

 

Misunderstood by GPs;

 
I sought GP advice and was prescribed anti psychotic drugs at first which were awful - worse than the symptoms I display so I refused to take them - after that I sought alternative therapy from a vestibular therapy specialist in Aberdeen, Scotland who tailored a series of rehabilitative exercises to retrain my brain and eyesight back to some kind of normal.
 
 

Emotional, psychological and physical effects;

 
 It can be quite depressing as you don't know when things are going to get better. You just have to stay positive and try to find expert advice which is short on the ground. I was told not to drive by my GP and it affected my cognitive ability to retain and pass on information.
 
 

Living with a balance disorder;

 
It is frustrating and perplexing because generally so little is know about it by the medical establishment. It is not life threatening so the big drugs companies are not interested in investing in research into treatment. You are just advised to allow the condition to settle which in my case took 7 months. Every now and then when I'm tired or working too hard it comes back in a minor way but I have strategies around exercise which I use to get back into balance. I don't think it ever goes permanently but you learn to adjust and to learn ways which help you cope. My family had to be patient and supportive. They were really good at listening and trying to understand.
 

 

Advice to someone who has just been diagnosed with a balance disorder;

 
Try to get expert advice asap - GPs don't tend to know much at all - you need expert advice from the start.
 
 

Doctors to recommend;

 
 Alan Seeley at his Vestibular Disorder Clinic in Aberdeen

Thursday 13 November 2014

"It's a daily occurrence.........It's been a daunting experience!" - Mrs O.A. Kehinde

 
 
 
It all started in 2001, I was standing at the Balogun bus stop in Lagos, Nigeria waiting for a bus. I noticed something really weird! Each time a car or motorbike went by, the sounds they made were abnormal.

Each time a car drove past, it sounded like it was zooming past a little too fast. It was unusual. Shortly after, I started experiencing slight loss of hearing in my right ear and a buzzing sound from both ears.


As if that was not strange enough, I also started experiencing a sense of lightheadededness, sudden dizzy spells and a feeling that things were moving around me. I could not focus on certain objects well particularly patterns such as stripes, dots, holes and zebra crossing patterns on the roadside.


I went to see a doctor and he confirmed it to be vertigo. He referred me to an ear,nose and throat specialist. After several hearings, tests and x-rays, I was placed on stemetil, a medication meant to alleviate the dizzy feeling/spells that comes with a vertigo occurrence.
 
It, fortunately for me, seized over time and I was able to live with it. But that became the beginning of my travail with the condition.

It has eventually gotten worse over the years. It first started in 2001 but by the year 2010 it reoccured and what used to occur in between long intervals now became a constant thing and eventually a daily experience. It became tricky and I could not function normally or be as active as I used to be. Suddenly things would start to move, I would feel nauseaus and sometimes vomit, and often times feel faint and lightheaded.

Then it became scary and during a summer vacation to England, I sought medical opinion frm an ENT specialist at bupa and after series of hearing tests as well as vestibular assessment, I was informed that the vestibular balance system in my right ear was completely down. That explained the dizzy spells, lightheadedness, feeling like one would fall down as well as a sense of imbalance.

I had to retire from work and could no longer do the things I used to do.

Getting up to walk around became a big issue. It literally was very scary. I would sit or lie down for hours out of fear of getting dizzy spells or feeling faint. The nausea that I often experienced was and still is awful. It dampened my appetite and the whole experience meant constant hospital admissions and need for hydration as eating became a big issue due to constant nausea.

Everything became scary to undertake or do. Fear, anxiety and depression became huge emotions I went through daily. Some days I would hold out well with great courage. I would attempt to live life normally when the spells are not so rampant. On other days, I would be frustrated by the effect of the balance issues that left one fatigued and lightheaded.
I soon got to understand what my own individual triggers are such as sudden head movements, getting up suddenly from lying or sitting positions, bending my head down and hot environment. I also learnt that a low sodium diet could help. However sometimes despite watching and avoiding my triggers, I still get the vertigo spells and other times I forget and do the things I should not do, yet I do not get the spells. Very strange and intresting. But I was told that it can be an idiopathic condition where things that happen sometimes can not be explained.

On one medical trip to the united states of America, I went for neurological assessments, did brain and neck MRI scans and thankfully they were normal and no tumour found. I was advised to try vestibular exercises and therapy as I did not to take the want surgical option.
 It has been a rollercoaster period in my life living with positional vertigo and labyrinth dysfunction.

It's a daily occurrence and getting up in the mornings can be very tricky and scary as it takes a while for the body to adjust to loss of balance systems and the brain often sends one into a dizzy state of imbalance that brings nausea and a state of disorientation.

Some days I do well and can manage to get through the day. Other days it's just terrible and I have to lie down through out the day.

Moving through a crowd, noisy places, shopping malls can be a distressing issue because of my inability to walk and balance well. What that means is that I hardly go out or attend social functions anymore. I can't take a bath in the mornings wen the feeling of imbalance is usually strong and wait till a later part of the day when I feel better and am able to move around a bit. Even at that, I bathe in a shower very quickly or sit down to bathe.
Sometimes the whole condition siezes for some days and I'm free to do as I wish, other times it comes on and is distressing virtually everyday for days and even weeks.
 
However, the episodes now have longer sieze periods in between the spells. Now that I know and understand the condition, I am able to cope better. Although it is still very scary when it comes on and can be very frustrating and depressing. One is not able to be as active as one used to be.
In my own case, hormonal fluctuations caused by an underactive thyroid as well as early menopause is said to probably be affecting the condition more.
Going out, moving about even at home can be a great issue sometimes and I've practically had to psyche myself to face and undertake doing things that I now find daunting and scary to do to avoid getting a vertigo spell or bringing on that state of imbalance that can last for hours or days sometimes.

 In terms of treatment, I'm considering undertaking vestibular therapy and exercises to retrain the brain to stop sending one into vertigo spells due to loss of vestibular function in my right ear.

It has been a long journey living with a vestibular disorder. It is very scary and frustrating. It has also helped me get closer to God.
There's very little the doctors can do beyond offering medications that one may react to, find ineffective or get addicted to, vestibular therapy and at the heights surgery, which comes with its own risks. All of which may or may not work. Even the doctors have said they are not God and can only try. Some medical personnel I've met in the course of seeking solution to vertigo, believe it wil eventually stop over time but can not say when.

It's been a daunting experience, leaving my job, having to depend on others to do things for me due to my inability to move around moreso as I no longer can drive and I find myself in solitude most times as everyone around me is on the go living their lives. I've had to cope with panic attacks, anxiety and depression. 
 
 I have also learnt to help myself and push through the episodes. I lie down when it becomes unbearable and wait it out. It has not been easy but I'm gateful for life and the fact that though terrible, my condition is not life threatening.

I wish people around me could feel what I feel and go through on a daily basis then they can understand. Most times people at the heights of insensitivity think I am putting on an act and Seeking attention. This is because my condition is not something that is seen and you sometimes do not look ill. Vertigo is real and can be terrible.

For me I've had to rest my hobbies such as reading and writing as that triggers vertigo spells most times. Even talkin can aggravate it as bright lights, noise, moving around on trains, cars, and even flying! All these has impacted on my lifestyle greatly in terms of turning one into some sort of recluse.Living a static, immobile life so to speak.
 
I look forward to that time when an end to this experience is total and definite.


-Mrs O.A. Kehinde

Wednesday 5 November 2014

Cruising to Dizziness....

Tuesday 4 November 2014

Imprisoned in a spinning world: Suffering from acute dizziness and sickness

Emma is a long term sufferer of Menieres Disease
 
 
When the car in which 16-year-old Emma Ings was travelling hit a lamppost she felt lucky to escape with whiplash, a broken hand and a black eye. Yet four years later, when she started suffering from dizzy spells her family began to wonder if they were linked to the smash.

Now 42 the cancer nurse from Hitchin, Hertfordshire, knows the dizziness was the first of many symptoms of Ménière's disease, a long–term progressive condition of the inner ear which affects balance and hearing and causes tinnitus and debilitating vertigo.

She first noticed it on a holiday in Ibiza aged 20. "I was swaying as if I was walking on a boat. Then a year later I was getting ready for work when everything started spinning round and I couldn't stop being sick. I remember a whooshing sound in my ear," she recalls.

Emma was rushed to A&E where doctors could tell from her pupils that balance was the problem. She was referred to the Royal National Throat, Nose and Ear Hospital in London where a scan ruled out brain and ear tumours.

Finally at 23 she was diagnosed with Ménière's disease.

The condition is caused by a build–up of fluid in membranes in the inner ear. Sufferers experience vertigo and sickness as the pressure increases causing the membranes to balloon and affect the hair cells that relay information about hearing and balance. These membranes can also rupture causing fluid to leak out and disrupt the hair cells, prompting sudden and severe attacks of vertigo and imbalance.
"I was swaying as if I was walking on a boat
                                        -Emma Ings"
Emma is now severely deaf in her left ear with moderate hearing in her right. When she learned what was wrong with her she was already experiencing constant tinnitus.
"It sounded as if I had a low aeroplane constantly circling above me," she says. "It got worse when I was tired and it changed over time. Sometimes it was a high whistling sound like radio interference which I couldn't escape."
She was also subject to terrifying bouts of dizziness and violent sickness which could occur without warning. "When I got one of the dizziness attacks it was like being hit on the head and then spun round as fast as possible while being violently sick. At a friend's wedding I was dancing one minute then spinning round the next. People thought I was drunk."
These bouts of vertigo could also put Emma in danger. "I was crossing a road in central London when an attack started. I had to cling to a lamppost and phone my husband Stuart to rescue me."
At her worst Emma, mum to Oscar, 12, and Henry, 10, vomited for up to 20 hours and would crawl to the bathroom because she couldn't balance to stand or walk.
"I've had months where the symptoms have been relentless, when I've been unable to even walk the boys to school but the children have kept me going. It would have been very easy to just sink into my own little world."
However the most frightening symptoms were Tumarkin's otolithic crises, also called "drop attacks", which cause a sufferer to fall to the ground with no warning only to recover quickly.
"Drop attacks are like being pushed forcefully across a room.
You feel the force and you go flying but then you can just get up again," Emma says. "I was once in the ladies toilets and the next thing I knew I had my head in a flowerpot at the other side of the room.
"The boys would laugh when I went flying across a room when they were younger but it was actually very distressing not to have any control over it."
Peter Rea, a consultant ENT surgeon specialising in balance disorders, says Ménière's disease usually strikes people aged between 40 and 60 and the causes are still uncertain. "Trauma to the head is one of the possible causes because of damage to the inner ear," says Mr Rea, who is based at the Balance Centre at Leicester Royal Infirmary.
"However there are a number of possibilities. About 10 per cent of people inherit it from aparent. Some sufferers may have an autoimmune condition and there is evidence for a viral cause."
Treatment for Ménière's starts with lifestyle changes such as a low salt and low caffeine diet, regular sleep and lowering stress levels.
Emma tried the drug betahistine which increases blood flow to the inner ear and diuretics which flush out water from the ear. She also had grommets inserted to relieve pressure in the inner ear. Surgical options include an operation on the inner ear to reduce the build–up of fluid and cutting a nerve to prevent abnormal messages from the balance organs reaching the brain, which stops the feeling of vertigo.
However Emma found relief with steroid injections in the inner ear.
Mr Rea says: "Steroid injections through the ear drum are very safe. There are almost no side effects and in some patients the injections can improve their hearing too.
"They don't cure the disease but they suppress the dizziness in many patients. The concentration of steroid into the inner ear is 280 times higher this way than if we injected it into a vein."
Emma, who wears two discreet hearing aids, had three rounds of injections over several weeks. "The steroids suppressed my symptoms yet they didn't affect my hearing."
Emma's doctors have also given her hope that she might finally beat the condition. "I haven't had an attack for the last two years," she says. "The specialists now think the disease may have burnt itself out."

 
Contact the Ménière's Society at menieres.org.uk or on 0845 120 2975 for more information


CULLED FROM: express.co.uk