Coping with MdDS

Like any other disorder, living with MdDS can be a daily challenge. Over the years, members of the MdDS Support Groups have given each other their best advice on how to cope with the persistent symptoms. Please note that the advice found on these pages is not medical advice and may not work for everyone. Most Support Group members would agree that the number one rule of advice is to reduce stress and be well rested.

    • Have the fluorescent lights above your work area disconnected. Use incandescent table-top lamps instead. In fact, if you have fluorescent lights in your kitchen, bathroom or other rooms in your house, you may want to consider switching them out.
    • Ask your employer for a LCD flat screen monitor, which do not flicker like the traditional CRT monitors. If you cannot get a LCD monitor, try a screen filter, available in most office supply stores.
    • Make sure your monitor is at the proper height. The middle of the screen should be at eye level when you’re sitting up straight. You don’t want to slouch in your chair or have to look down to view the screen. There are many types of stands available at most office supply stores to raise up your monitor.
    • Several Support Group members recommend f.lux, which adjusts your monitor’s light/color output. It’s free here.
    • Use a speaker phone or headset for hands-free use. Do not rest the phone between your ear and shoulder.
    • Have rails put along side of all stairs and if necessary, in the shower/tub.
    • Pay bills via telephone or on-line banking.
    • Do not stand on stepstools, chairs, ladders; have someone else reach/clean all high areas.
    • When getting new glasses, be mindful of the base curve of the lens. It is recommended that you keep the base curve the same as your old lenses as changing the base curve may significantly increase your MdDS symptoms and/or cause dizziness. However, you may want to experiment with different base curves to see if an alternate one may actually decrease your symptoms.
    • Try to hold your book, e-reader, tablet or phone up, to avoid downward gaze. When your arms get tired, it’s time to take a break.
    • Listen to books on tape if reading is a problem. These tapes are available at most public libraries and/or can be purchased from most book stores and online.
    • Set a timer for 10-15 minutes for reading and work your time up slowly. Hold the book out in front of you so that you are not looking downward.
  • While exercise may increase MdDS symptoms temporarily, most MdDS sufferers who have turned to exercise have found that it does help to decrease their overall symptoms. The most difficult aspect of an exercise routine is staying motivated when you already don’t feel well. Below, read what a few of our support group members have said about exercise and MdDS.

    girldoingyogaTerry  I was doing [vestibular] therapy for awhile. …At the end of every session, they had me do 20 to 30 minutes on the tread mill.  I always felt better the next day after doing that.  …So that is when I started walking and really started feeling better, which led to step aerobics.  I think it is really important to stay active…even though you just want to go to bed and sleep.  I do think sleep is important, at least 8 to 10 hours, but get some exercise and drink lots of water.
    taichiSusan  You have to start out slooowly and persevere! Six months after the onset of MdDS, I started walking outdoors. Unlike some other members of the group, I cannot tolerate a treadmill… makes me so nauseous and dizzy. I used to have to drive to the park to walk… I worked up to 3 miles and then stretch after my walk. My symptoms would be higher and the car ride home helped my symptoms to subside again. Even though I would feel rockier after my walk for a little while, exercising does help my symptoms overall. Now, I don’t have to drive to the park and can just walk in my neighborhood… my symptoms still go up afterwards but I just keep moving when I get home until my heart rate returns to normal. You may have to experiment with a couple of different things before finding what works for you.
    weightsMarla  Exercise videos really help with my balance. I like to walk outside too but the weather doesn’t always cooperate.  I agree about exercising as much as possible on the days you feel good.  On my bad days, I just can’t get up the energy and when I do exercise, I get dizzy and have to sit out some of the steps – especially the ones that work on balance… I think it is important to include upper body weight training with 5 lb. weights also.  It’s a fun way to exercise on days when the weather doesn’t allow it…
    wateraerobicsMary I do feel that water aerobics, brisk walking with keeping my eyes on the horizon in front and Pilates has helped. Especially the water aerobics. When I’m in the water, it’s like I’m riding in a car. The rocking is balanced out and I feel normal.
    Consult your physician before beginning any exercise program.
    • Make cooking a family affair. Let the family help, especially with whisking, stirring and mixing. Have others do preliminary clean up by washing dishes used to prepare food as you go. If you can’t get help during dinner preparation, have your family clean up after dinner.
    • Try to think through the preparation, and pre-plan, to avoid excessive turning or rotational movement in tight spaces.
    • If downward gaze/looking down to chop is bothersome to you, try preparing vegetables, etc. while sitting at a table.
    • Use the dishwasher. If you don’t have one, try taking a half-step back from the sink, to elongate your gaze as you wash. Let the dishes air dry, then put them away.

Maintaining Your Emotional & Spiritual Well-Being

  • One Support Site member suggests “we need to experiment, gently, in order to see what we can tolerate.”
  • Recognize and emphasize what you can do instead of what you cannot.
  • While MdDS is a life altering disorder, be thankful that it is not a life threatening disease.
  • Be kind to yourself.
  • Try not to be hurt when people don’t understand MdDS. It’s really something they’re saying about themselves.
    • When invited out, reply, “Can I give you an answer on that day?” Eliminate feelings of guilt as much as possible.
    • When attending sporting events, the theater or other public events, get to your seat early so you don’t have to walk through large crowds. After the event, wait until the rush of people have dissipated before leaving your seat.
    • Unless it’s a movie you really want to see on the “Big Screen,” you may feel better if you rent it and watch it at home. When you do go to the movie theater, don’t try to leave the theater immediately. Instead, wait until the lights are turned up and the crowd has left. Walk slowly and hold onto the backs of the seats.
  • For many people, a visit to the dental office increases anxiety. Since anxiety and stress often cause an increase MdDS symptoms, taking steps to reduce stress before, during, and after a dental procedure is beneficial. The following should be considered:

    • Drink plenty of fluid (be well-hydrated) before arrival at the office
    • Eat (and brush) before you go; an empty stomach can increase irritability and stress
    • Explain your condition to the dentist; provide a copy of the informational brochure available in the library
    • Bring an iPod/CD player and listen to a relaxing music during the procedure
    • Ask that the dental chair not be completely reclined
    • Take a small, comfortable pillow to provide extra support for your neck
    • Don’t sit up too quickly after the procedure
    • Have someone go with you so that you don’t have to drive

    • Have your spouse, partner, a family member or friend do your grocery shopping for you. Prepare a detailed list for them to make it easier.
    • If you can’t find someone to do your grocery shopping, experiment with pushing a cart. Some find it better if they hold onto the cart; others find it easier to carry a small basket or to have someone else push the cart.
    • Shop online for your clothing, electronics, etc.
    • Give gifts of money or retail gift cards.
    • Wrap gifts on a kitchen counter or other high flat surface, like the dryer. Standing upright will not increase your symptoms as much as wrapping on the floor, bed or on a low surface where you have to bend at the waist. (Same goes for folding laundry).
    • Make your own greeting cards online or have a supply on hand.
    • Be well rested before your trip.
    • Whenever possible, avoid the back seat when traveling in a car.
    • For many, being the driver is better than being a passenger. If you have to be a passenger, look straight ahead instead of looking from side to side.
    • When taking long driving trips, stop every couple hours and take a 10-15 minute walk. This is good for your balance as well as your circulation.
    REMEMBER, travel affects each of our symptoms differently.
    • Reduce stress by packing early and getting to the airport well in advance (stress increases symptoms).
    • Try EarPlanes or FlyFit earplugs. One Support Group member says, “I put them in before the door closes, and I don’t take them out until after I disembark. They helped me a lot.”
    • Sit by the wing section, the most stable part of the plane, to reduce sensations of flight motion and turbulence.
    • Avoid downward gaze/reading. Listen to books on tape instead.
    • Discuss medication options with your physician. Some Support Site members’ physicians have suggested taking benzodiazepines or slightly increasing their dosage prior to and for a short time after air travel. Benzodiazepines suppress the vestibular system and may help minimize the affects flights have on MdDS symptoms. While many Support Site members claim this course of action has helped them during travel, clinical studies are required to prove their effectiveness across the population of MdDS sufferers.