Tag Archive | vestibular disorders

Upon Turning 80

Mom, thinking 2

photo by Susan Kauffmann

I have found whenever I do something to just be a good person, I get back much more than I ever give. This is exactly what happened when I sent Joseph Tresser some information about vestibular disorders because he suffered with dizziness a few months ago — I know how scary that can be.

Little did I realize how much he would help ME get through a challenging, painful period in my own life. With wisdom and knowledge, encouragement, and a wonderful sense of the ridiculous, Joe helped see me through the long wait for and actual hip replacement surgery. His help has been invaluable.
Joe sent me this and gave me permission to share it with you.

MY GOAL IN LIFE — UPON TURNING 80

Joseph Tresser

Joseph Tresser

By Joseph Tresser

Having experienced ups and downs

Over many years

On a rapid train through many countries

From revolutions to hurricanes and shaky earthquakes,

I developed a simple formula enriching

‘My Goal in Life’ which states:

‘Live young, have fun, and arrive at your final destination

As late as possible

With a big smile on your face

Because this would mean

That you truly enjoyed the ride.’

You can’t go wrong, especially so

If you have made many good friends

Along the way.

Advertisements

Facebook?

mom-pic-to-cropI’m a tough old broad. I don’t give up easily and I’ve always wanted to be more technologically knowledgeable. (I dare you say those two words in a row quickly.) I thought I wanted to know how to use Facebook like a lot of other people do. After all, anyone who IS anyone is on Facebook, right? So, once when my son visited, I cornered him to help me and he set me up.

However, all good things come to an end and that was all Rafi had time for on that visit. After he went home, I took advantage of a very patient young friend to become more computer literate and asked him to teach me how to actually use Facebook. He tried. He knew what he was doing. I learned a little. Whatever was I thinking?

At first it was thrilling. I suddenly heard from a few wonderful people out of my

funny worried lady again

How do they know???

distant past whom I hadn’t heard from in years. That was pleasurable, but also a little scary. How did they know so quickly I was on Facebook? I would feel better if I understood more about how these things really work.

There are the many emails I now receive telling me I have 28 or 35 new notifications, or this person and that person want to be my ‘friend’. I don’t know most of them. Why would they want to be my friend? If I didn’t know me would I want to be my friend? And are they even aware that they do? I wonder…. Then, how much time does it take to view 28 or 35 new notifications? And, can I spare all that time?

Girl-dizzy

All those colours and pop ups can make me dizzy.

I also get emails telling me someone or other has posted a new photo. If i know them, I do try to go see them. Sometimes I manage and sometimes I don’t. What I too often find are numerous advertisements, many of which pop up in boxes, and so much dizzy-making colour busyness and confusion that I find myself rapidly withdrawing. It’s a matter of self-preservation. I have a Vestibular Disorder. This kind of moving visual thing can be a trigger for dizziness.

Over all, I’ve discovered, after the initial joy in finding and touching base with treasured old friends again, Facebook can mercilessly gobble up your time as well. Yes, I am retired. Yes, I don’t work anymore. Still, there are things I need to do, or want to do, or find more interesting to do with my free time.

Have you seen my scarf?

This old body of mine demands more attention than it used to.

As an ancient personage, I have discovered everything takes longer than it used to and this old body of mine demands a lot more attention than it used to. So, the question is: Do I really have time for all this?

What is your experience with Facebook? I want to know if you use it and what you think.

Oh dear! A Concussion?

Mom Scared SM I have a vestibular disorder. I have dealt with balance and dizziness issues for years. I have fallen many times. I listen to the news — I am interested in what happens when athletes suffer concussions. I know about these things. There are members of the organization I co-founded 15 years ago who deal with vestibular conditions because they’ve had concussions. You would think I’d know better….
I fell again recently. I went down like timber in the middle of the night and hit my forehead against a dresser with metal drawer pulls. Ouch! I was visiting friends. I didn’t want to disturb them so I said nothing — and did all the wrong things!

I fell down like timber in the middle of the night

I fell down like timber in the middle of the night


I dragged my aching body back into bed. The next morning, by pulling my hair down over it, I hid the large bump on my forehead which had blossomed into lovely shades of purple and blue. Clothing hid the bruises on my body and I claimed exhaustion and blamed the heat wave (it was 110 F. there) as an excuse to lay low. These are especially good friends and they let me call the shots. They spoil me and take care of all my needs/desires and I felt okay for the rest of my visit with them and noticed nothing.
After arriving back home, I felt unusually exhausted and unable to function. I’m organized — I made a list. It overwhelmed me — I’m not ordinarily easily overwhelmed. Friends called, but I was too weary to call them back (which was weird — I’m talkative) and sent out an email to a few at once saying I would call after I rested for a few days. A friend called back to ask if I had forgotten our book club meeting (at my place) the very next day. I had seen it on my calendar — it just hadn’t registered.
I had a concussion

I had a concussion

This friend knows about concussions. She recently had one herself. She suggested I see my doctor and I listened. My doctor confirmed that I did, indeed have a concussion and told me which steps to take, and especially to take it seriously.
“Muriel, I am interested in prevention,” she told me. “I want you to carefully think about it. Tell me exactly how it happened, why it happened, and what you can do to avoid it in the future.”
The brain, before and after a concussion

The brain, before and after a concussion


We discussed it together and I subsequently thought about it further after I got home and this is what I came up with.
#1 I was over-tired. I had risen at 4 a.m. the day before, then taken an all-day train from San Francisco to Los Angeles, arriving at about 9:00 p.m. Excited to see each other, my friends and I chatted awhile before I turned in. I awoke, as usual, sometime during the night to go to the bathroom, but was too tired to get up. If I ignore it, I hoped, perhaps I would fall back to sleep. It worked, but when I awoke the next time, it was a more urgent call for action. I moved too quickly.
#2 The bed I slept in is a sofa-bed. I’ve slept in it many times and it is lower than my own. Usually, I support myself with my hands when I get out of bed at home. I could not do that on the sofa bed. I needed to raise myself slowly and be sure of my footing before getting up. I was in a real hurry. I didn’t.
#3 The carpeting is plush and thick and soft — my own at home is not. I should have taken more time in turning towards where I was heading. I didn’t.
#4 In any case, I could have used my walking stick for support, no matter what. I didn’t. I jumped up, turned and keeled over.
“After the horse ran away, I locked the barn.” From that night on:
I did not put off the middle of the night trip to the washroom, so it would not feel so urgent.
I took my walking stick up to my bedroom each night and diligently used it for stability each time I got out of the low sofa bed and walked to the nearby washroom.
I turned slowly — as I should have in the first place.
It was too late to prevent the concussion this time, but I shall remember these steps in the future. And, I was extremely lucky. I’m okay now.

Live and Learn

Muriel from Blog

As time passes, I’ve had to change my mind on many issues — just one of which is wondering why otherwise intelligent people can throw money away on promises of unlikely cures. I didn’t understand, for instance, why people with cancer would pay thousands of dollars to go to some Mexican clinic to be given shots made of apricot pits. Did they really think it would work? Why, I thought, would they be so gullible as to believe charlatans and frauds who offer magical cures for whatever? (Thank goodness delicacy required me to keep my mouth shut on the subject at the time.)
You know I’ve dealt with dizziness, nausea and imbalance for years. Episodes in the past were awful, but less frequent. During the 1990s, they hit with a vengeance and tenacity I was unable to cope with. I, myself, became one of those “gullible” people. I now realize it is not so much gullibility as desperation.

The dizziness was so persistent, I was unable to cope

The dizziness was so persistent, I was unable to cope

I, who had flatly refused to take hormones, who questioned and refused just about every prescription any doctor tried to give me, suddenly accepted, bought, payed for, swallowed and did whatever my doctor or anyone else suggested might help. I wanted my life back!
Antivert didn’t help, so I tried SERC, then Dramamine, then, as recommended, I doubled the SERC. I tried a diuretic. I was willing! I was desperate! I was even ready to try inner ear surgery which causes deafness but “might” eliminate the dizziness. (I later did have that surgery, but whatever was causing the dizziness had by then also caused deafness in that ear, so there was nothing to lose.) It too did NOT cure the dizziness.
“We just got a brand new product in for nausea,” suggested my local pharmacist, who no longer had to ask my name. I bought it… It didn’t work.
“Have you tried acupuncture?” inquired a business associate over the phone.
“No, do you know someone?”
I didn’t know her, but I accepted her recommendation anyway.
“How about a holistic practitioner?” someone else proposed.
What’s his number?” I asked.
I was ready to try anything. If someone had promised the dizziness, imbalance and nausea would go away if I stood on my head and spit nickels, I’d have tried that too.

 Off-balance, dizzy and suffering with nausea, I would try anything


Off-balance, dizzy and suffering with nausea, I would try anything

As you can imagine, I wasn’t doing much cooking and jokingly threatened to turn my kitchen into a bedroom, but the shelves began to look more like a large medicine cabinet, lined with containers full of prescriptions and remedies that didn’t work. I thought I’d have to toss out some dishes just to make more space.
I popped pills, was poked by needles, swallowed vile-tasting, expensive Chinese herbs and solutions as directed, plus I obeyed and consumed nothing but cooked foods. My body had “too much dampness and too little energy”, and there was a heck of a lot of work to be done on my “spirituality”!
Finally, I came to the conclusion that what I definitely didn’t have enough of was — money, to pay for it all — I had become too ill to work.
Being desperate enough to grab at any solution myself, I learned an important lesson and was, once again, humbled. Vestibular disorders don’t kill you, but they can make you wish you were dead. So I now fully understand how others suffering from incurable and possibly life-threatening diseases can succumb to the hope held out by those bastards who prey on our vulnerabilities.
And, I’m still learning…..

Coping Strategies and Learning to Live with Dizziness

Since I’m experiencing dizziness right now and it is debilitating, I thought I could, at least, share this worthwhile information with those of you who may find it helpful. It is a summary of a presentation made by physiotherapist Nicole Acerra, PhD. at a meeting of the BC Balance And Dizziness Disorders Society (BADD) at St. Paul’s Hospital in Vancouver, on November 21, 2013.

Coping Strategies and Learning to Live with Dizziness

by Joyce Pinsker

No matter how long you’ve been living with dizziness, you can always learn more strategies to improve your quality of life. If the job of rehab is to maximize your energy and a longer-term maintenance program helps you keep that energy, the job of coping strategies is to help you use your energy to avoid or deal with symptoms. Collect tips from as many sources as you can; talk with others, including those with dizziness problems, therapists and researchers, and search the Internet. You will find there are many small changes you can make in your life that have a big impact.

It can take months or even years to determine a diagnosis and sometimes there is no clear answer. This can be a real source of frustration and stress. Simply not knowing what’s going on can make your dizziness feel worse. It is normal for stress to make this kind of impact. Unconfirmed medical diagnosis ranks at the top of the stress scale, right along with death of a loved one or getting fired.

Most people go through a period of active rehabilitation after diagnosis. This might involve gradually reintroducing activities on your own or formal rehabilitation with healthcare professionals. To maintain and improve the level of function and fitness you’ve achieved through rehab, make an exercise program part of your regular routine. Tailor it to your needs and lifestyle, including cardiovascular exercise; ten years of research has shown that cardiovascular activity is one of the top keys to recovery. Many people’s problems completely resolve after rehab while others continue to live with dizziness and can be helped by doing long-term rehab at home.

As much of the vestibular apparatus lies within the inner ear, no lab tests can be done to provide a precise label for what is wrong. Clinical dizziness tests, however, will show what is not working and quantify your deficits. In terms of moving forward with your life, identifying your deficits is every bit as helpful as getting a label for what is wrong.

When you know the source of your symptoms, and have rehabbed as much as possible, at some point you need to learn to live with the remaining symptoms. As we have a limited amount of energy each day, it is very important to use it strategically. Compile a list of what predictably makes your symptoms worse and what relieves them. This will give you a sense of your triggers. Then ask yourself what it is you want to do, what it is you’re struggling with, and what your goals are. Make your goals SMART (specific, measurable, attainable, relevant to you, and given a timeline).

Coping strategies vary widely and include avoiding aggravating factors, learning to prevent your symptoms or triggers from happening, learning how to prioritize and organize your day or week, eating well, keeping hydrated, maintaining fitness, avoiding safety pitfalls, and improving your sleep.

Good sleep hygiene includes falling asleep well, being able to go back to sleep well if you wake up during the night, and feeling rested when you wake up in the morning. Research shows that a disturbed sleep impairs your ability to remember things. If your dizziness symptoms feel worse when you don’t sleep well, you’ll have a bad day, and that can become cyclical. Sleep tips include avoiding evening naps as well as television viewing just before bedtime.

If you need to get up frequently at night to use the bathroom, work with your physician. Try pelvic floor (Kegel) exercises. Learn strategies to fall back to sleep quickly. For example: don’t look at the clock; keep the room at the right temperature; orient your bed for quick and easy access to the toilet; and wear uncomplicated nightclothes.

If your symptoms are worse in the dark, use a nightlight and be mindful when turning lights off as you walk to your bedroom. Keep spaces clear so you don’t bump into or trip over things in the dark. Slide your finger along the wall for extra proprioception.

Help the balance receptors in your feet by wearing the right type of footwear. Firm soles make you feel less disconnected from the ground and are usually a better choice than soft soles.

On a bus, try to sit near the front or where you can see outside. In a car, avoid the back seat. On a plane, planning ahead is often a major part of success. Pack well ahead and get a good sleep the night before. Schedule daytime flights if possible and keep well hydrated. Sit near a window and look outside during take-off and landing. When you can both see and feel the movement, your vestibular and visual systems will be more likely to agree with each other.

Proprioception can be improved through activities including a wide variety of balance exercises, rubbing your feet, or stretching tight calf muscles. Pay attention to the joints that cause you problems. Try Tai Chi, balance, or yoga classes to add a bit of fun. Many community centres offer adapted yoga and fall-proof programs. You may be eligible for a research study or fall prevention program, such as that offered by the VGH Fall Prevention Clinic. www.fallsclinic.com.

Reprinted with permission from the BC Balance And Dizziness Disorders Society’s newsletter “The Balance Sheet”. Find BADD’s website at www.balanceanddizziness.org

The Magical Maneuver

June 17, 2012

The Magic Maneuver

Last night I gave in. I did an Epley maneuver on myself. I hate doing it. It makes me feel so dizzy and ill during the process, and then nauseated for a time afterwards. But, I’m much better for it today. Whew!

For many years I’ve dealt with a vestibular disorder, which causes bouts of dizziness and problems with my balance. Often, an Epley maneuver can help dissipate the dizziness when it occurs, depending on what is causing it. Since the Epley is non-invasive and can’t hurt, it is worth a try, but I tend to stall because, in my case, it temporarily feels so awful. I’m a coward. I keep hoping the spinning will pass on its own. It usually doesn’t and I usually end up giving in. This week, it didn’t go away, so……

I didn’t do the Epley until I went to bed, so I wouldn’t have to do anything afterwards except concentrate on feeling miserable and sorry for myself. When I awoke this morning, however, and turned over to get out of bed, the room didn’t twirl. It worked! I’m so glad, because my son, his wife, and their little one are coming to visit and I don’t want to be feeling unwell while they are here.

The Epley maneuver, named for the doctor who discovered it, is believed to move particles in the semicircular canal of the inner ear out of the area where they are creating havoc. The condition it works so well for is called Benign Paroxysmal Positional Vertigo, (BPPV) and is the most common cause of dizziness. It is more likely to happen to people like me, who already have another vestibular condition.

One of the ways you can identify BPPV is if the dizziness occurs mostly when you move your head, like up or down, or roll over in bed. Physiotherapists who deal with vestibular disorders know how to perform the Epley, and most physicians today are familiar with the maneuver. I DON’T RECOMMEND THAT YOU DO IT YOURSELF. PLEASE CONSULT YOUR PHYSICIAN. I was carefully coached by my own wonderful physiotherapist, who did it on me so many times, she thought I could finally manage it by myself.

For more information about vestibular disorders, go to the B.C. Balance and Dizziness Disorders Society’s website: www.balanceanddizziness.org