Like any other disorder, living with MdDS can be a daily challenge. The first tip we can offer is, know that you are not alone. Over the years, members of our support groups have given each other their best advice on how to cope with the persistent symptoms. Please note, the advice found on these pages is not medical advice and may not work for everyone. Most support group members would agree that the best pieces of advice are to reduce stress, be well rested and to try and listen to what triggers symptoms in your own body/brain.

General Tips

  • Listen to your body / brain.
  • Experiment, carefully, in order to see what you can and can’t tolerate. Symptoms and limitations vary significantly from person to person.
  • It takes time to build self-confidence around what you can and can’t do with MdDS.
  • Don’t feel guilty for not being able to do even the most trivial of task.
  • Do not stand on step stools, chairs, ladders.
  • Do not stand up quickly from laying / sitting down.
  • Reach out to others who have this and who understand; join a support group.

Traveling by Car

  • Be well rested before your trip.
  • Sitting in the front seat is usually better than in the back. For many, driving vs. being a passenger is better.
  • When taking long driving trips, stop every couple of hours for a brief walk. This is good for balance as well as circulation.

Traveling by Air

  • Be well rested before your trip and take appropriate steps to ensure that you mitigate stress levels relating to travel.
  • Try EarPlanes or FlyFit earplugs.
  • Choose seats in the midsection, the most stable part of the plane, to reduce sensing flight motion and turbulence.
  • Discuss medication options with your physician. Some support group 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 group 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.

Exercise

Exercise is the 4th piece of advice that many have found to be extremely helpful in coping.

  • Start slow and experiment gradually with capabilities.
  • Walking or running while focusing on the horizon is one of the best forms of exercise given MdDS limitations.
  • Some find walking sticks or a cane to be helpful.
  • It has been suggested to avoid gym equipment that creates repetitive movement patterns, i.e. treadmills or ellipticals. Other equipment that may be flare symptoms include the rowing machine and Stairmaster.

Consult your physician before beginning any exercise program.

Work

  • Some have found blue light blocking software and  glasses helpful.
  • 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.
  • Maintain healthy ergonomics – posture, positioning of the chair, height of computer screens, and use of a headset and speakerphone.

Shopping & Going Out

  • Experiment with in-person vs. online shopping.
  • Shop in-person during off-peak hours to avoid heavy crowds.
  • 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 has dissipated before leaving your seat.

Cooking & Diet

  • Ask for help cooking, especially stirring and mixing, as well as loading and unloading the dishwasher as the up and down movement may trigger symptoms.
  • Caffeine appears to have mixed effects on MdDS patients. While some find the caffeine boost helpful to compensate for some of the exhaustion and “brain fog,” others cannot tolerate it. Excessive consumption appears to not benefit most.

Eyeglasses & Reading

  • Experiment with types and shapes of glasses, if needed. Important to note that a change in shape may increase or decrease symptoms.
  • Some have found it beneficial to hold their book or tablet at eye-level to avoid downward gazing.
  • If reading flares symptoms, try books on tape.

Maintaining Emotional & Spiritual Well-Being

  • Recognize and appreciate what you can do instead of what you cannot.
  • Try and understand that there will be good days and bad days.
  • Don’t feel guilty for not being able to do even the most trivial of task.
  • While MdDS is a life altering disorder, be thankful that it is not a life threatening disease.

Suicide Help

National Suicide Prevention lifeline: 1-800-273-8255
International Suicide Prevention Hotlines