After one year without land legs, this is what I know for sure:
It gets better. It gets easier. Hard to believe, but it really does. My progress has been very slow. It took months to see notable improvements. Recovery hasn’t been linear. I still rock, bob, and sway, but day to day I feel good in spite of it. My light sensitivity is so much better! I got better at adapting. I’ve learned my limits, and I know what I need now to keep my symptoms stable.
The constant motion has become my new normal. I remember in the early months someone in the MdDS support group told me this would happen. It was sort of comforting at the time, yet also seemed totally impossible, but it happened eventually. It is amazing what we can get used to.
I had to grieve the loss of stillness. Like a death, I had to go through all the stages of grief before accepting this as my new normal.
The stress of constantly trying to avoid triggers triggered my symptoms more than the triggers I was trying to avoid. For example, worrying about what kind of lights or enclosed spaces I’d be in made my symptoms higher than just relaxing and dealing with the trigger if I encounter it. I always carry blue-light blocking glasses with me just in case. However, this bit of wisdom does NOT apply what I’d call my “extreme triggers” like cleaning the refrigerator, light shows, or drinking an entire caffeinated beverage, which are among the things I have to completely avoid.
It takes about a week to get back to baseline after an “extreme trigger” or migraine. This has been helpful for me to remember when I am going through those “spikes” in symptoms or having migraines. It does get better and easier again.
I need to stay active and distracted. Consistent workouts seems to help stabilize my symptoms. Physical activity throughout the day helps me manage headaches. I have to intentionally engage in things throughout the day that make me forget about my motion sensations. I’ve always done best when I’m around people, and I’ve gotten much better at keeping myself distracted when I’m alone. I think it’s best for me not to log or track symptoms anymore, but it does help to acknowledge progress and improvements!
Here are the things that I can say with 100% certainty have helped me improve or stabilize my symptoms:
- Sleeping as much as possible
- Optokinetic Stripes Treatment and home exercises (at Mount Sinai Hospital)
- Taking Cyproheptadine daily (antihistamine/migraine preventative)
- Clonozepam as needed for high symptoms or to prevent a regression
- Vigorous exercise (although it took me a while to work up to this)
In one year Mal de Debarquement Syndrome has made me more compassionate, less judgmental, more understanding, less of a perfectionist, more appreciative, less anxious about the small stuff, and more accepting. It has changed my perspective on so many things, and as a result helped me learn to focus on what matters most to me.
My voyage continues and adventure awaits!