Meniere’s Disease: Family Support, Counseling & Networking

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If you or a loved one have a confirmed Meniere’s Disease diagnosis, it often feels devastating. This condition is so rare that most people have never heard about it before. Making matters worse, Meniere’s has no known cure and limited treatment options. So, where do you go from here?

Support When You Have Meniere’s

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From the get-go, realize it is hard to describe your symptoms to anyone. Your doctor can tell you about how Meniere’s presents itself, and a little about what to expect in an episode. But nothing prepares you for the real experience.

Meniere’s attacks are unpredictable. Not all symptoms happen at once and what you experience may change from one episode to the next. Living with this condition is frightening. It can prove frustrating and traumatic. It’s common for people with Meniere’s to suffer from depression, anxiety, and anger. Limitations are burdensome. Your feelings are valid. Don’t dismiss them: They require intervention on your part.

Counseling for Coping with Meniere’s Symptoms

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Talk therapy is one of the most recommended ways of helping you find a release and positive coping mechanisms for the way Meniere’s Disease has left you feeling. The beauty of talk therapy is that your counselor has no personal, emotional involvement. They are there for you. In this setting, you can explore your emotions, resentment, setbacks, and the way you perceive other’s reactions to your condition.

There are suggestions that can make your counseling experience effective.

First, find the right counselor. Just because you go to someone doesn’t mean you have to stay with your initial choice. Go a few times and see how you mesh. If the “fit” feels off, try someone else. Most counseling clinics have a social worker whose job it is to help you find the right person – let them help!

Second, start a Meniere’s diary. Write about how you feel from one day to the next. Let your writings focus on what’s bothering you. Take these notes with you to your sessions. They’re a great jumping off point for discussion (and you can make notes of that discourse too!). As you review this diary from time to time, you’ll see personal progress that encourages you further.

Third, do your homework. Counselors offering Cognitive Therapy often give you activities for you to finish before you see them again. Some are question-answer type papers. Another task might involve tracking your sleep, eating, and other habits. This information may help you determine what triggers your Meniere’s attacks.

Fourth (and this is the hard one), you need patience. You will not jump up one day and find you have a full understanding of how Meniere’s will affect you and your lifestyle. It takes time to identify the effect of symptoms and how you will manage them best.

Last but not least, your counselor may recommend support groups you can contact. These groups offer you the chance to hear about other people’s experiences and struggles – participating in such groups affirms you are not alone on this journey. They may also have great tips about different therapies that help Meniere’s symptoms. The more you know – the better.

Family & Friends of a Meniere’s Patient

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When someone has a chronic disease, it’s normal for a loving family and friends to want to jump in and “fix it.” The first part of your journey involves accepting Meniere’s has no known cure. The condition isn’t likely to just go away soon, and the symptoms are erratic. That makes finding a framework for your support difficult.

Understanding Meniere’s Syndrome

Step two on your journey involves learning as much as you can about this disease and how it manifests. You can expect your family member to experience various physical expressions of Meniere’s including:

  • Bouts of dizziness and vertigo lasting for 20 minutes or more.
  • Complaints of ringing in one ear and/or stuffiness in that ear.
  • Signs of hearing loss.

As you might imagine, these symptoms are even more disconcerting for the patient than they are for you. What’s worse, vertigo and hearing loss impact a person’s life in dramatic ways. Meniere’s sufferers may have difficulty with:’

  • Using heavy machinery.
  • Driving a car.
  • Going for long walks alone.
  • Take part in family photos due to the flashing lights.
  • Passing through areas with loud noises or fluorescent lighting in safety.
  • Hearing a noise that signals danger.
  • Traveling without getting nauseous.
  • Handling high activity levels without fatiguing.

Meniere’s Disease changes your loved one’s daily life. Understanding what they are going through gives you a good foundation for providing all the help and patience your loved one requires.

Making a Meniere’s Plan Together

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One thing that makes everyone in this situation feel better is having a plan that details out important aspects of safety, comfort, and medical considerations for daily living.

Adjusting Your Lifestyle to Meniere’s: Planning Ahead

Now it’s time to get down to business. There are simple steps you can take that provide a sense of security and peace of mind:

  • Have designated drivers or walking buddies. Those with severe Meniere’s should have both for their own protection. Keep names and phone numbers handy.
  • Set up the house with safety-first in mind. Where can you put handrails? How about a shower seat? What about no-slip rugs? If your Meniere’s proves disabling, your insurance may cover some adaptive equipment for the home.
  • Determine where to store medications for fast access. Have more than one location if you have a large living space.
  • Since vertigo and dizziness can lead to a loss of balance, it’s a good idea to invest in a fall monitor. It signals you or an emergency company in the event you fall and become incapacitated.
  • Consider a hearing aid to offset hearing loss.
  • Create a call list including any family members and physicians you want to be notified if you have an attack (even if it does not require hospitalization – this is for tracking).
  • Look at your common environment and daily routine with new eyes while considering Meniere’s symptoms.

Summing It All Up: Meniere’s Disease is a Chronic Illness, But There’s Hope

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If you have a chronic illness like Meniere’s, being open and honest is nothing short of essential. Remember that to other people you or your loved one look normal. No one outside your chosen circle knows anything about Meniere’s. It’s a personal decision who needs to know.

No one should shut down because they feel a question or concern is silly. Likewise, a sufferer should be able to say to their loved ones, “Hey I’m having a bad day.” Keep talking and listening. This creates a trusting foundation that eases emotional struggles common with Meniere’s.

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