Two years without land legs, and this is what I’ve learned:
Treatment for vestibular migraines has helped my MdDS symptoms. I was diagnosed this year with vestibular migraines (in addition to Mal de Debarquement Syndrome), and I’m really thankful I sought out another opinion. Being labeled with the official diagnosis motivated me to do more research into treatment options, lifestyle changes, and new doctors. It has helped make sense of some of my strangest and scariest symptoms, and has helped me find new and more effective treatments. I’m without a doubt having the lowest symptoms yet and feeling the best I’ve felt in 2 years (see below for treatment details).
I had to keep trying stuff in order to get better. I went through a few months this year feeling completely hopeless about the endless rocking, light sensitivity, and lack of doctors who understand. However, once I got the energy back to research, try new things, read more, and schedule appointments with new doctors, it helped me move forward in the healing process somehow (even if it didn’t seem like it at the time). I’m so glad now that I didn’t give up.
Grief over a chronic illness comes back in waves. This time last year, I thought I had fully accepted my challenges and “new normal.” But as new challenges arose, so did those old feelings. I’ve learned to accept my grief when it comes, and not view it as a problem to be fixed. I try not to dwell on anything too long; I journal, count my blessings, and look for the silver linings. I’ve reached a good balance of accepting that MdDS and VM are a part of my life right now, while making space for hope that more healing is on the way.
I’ve spent my adult life underestimating my own need for rest and mindfulness. I think a big contributing factor to the onset of MdDS was the way I was living my life before. I was a total coffee addict, my motto was to “do all the things,” I stayed up as late as possible on the weekends, and my answer for every problem was to do more or push harder. I would fill my vacations with sightseeing instead of relaxing. I was always planning the next thing to do or say, rarely completely present. It’s been hard to let that side of me go. But, since I’ve realized this and made down time and living in the moment a priority, I’m much more at ease, and my symptoms are lower.
Here are the things that have helped me improve or stabilize my symptoms this year:
- Timolol Maleate Eye Drops 0.5% (read more)
- Cefaly (read more)
- Clonozepam as needed for high symptoms or to prevent a regression
- Supplements: Magnesium Glycinate and L-Theorate, Vitamin B2, Vitamin D3, and CoEnzyme Q10, Multi-Vitamin
- Reading, learning, getting inspired, and questioning my negative thoughts
- Prioritizing rest, play, routines, and mental stillness
Here are the things I thought had helped me last year, but now I’m not so sure:
- Cyproheptadine (4mg daily): I realized after I stopped taking it that it made me hungry all the time! It seems likely that taking it for so long also contributed to some food allergies and triggered GI inflammation.
- Vigorous Exercise: When I was on the cyproheptadine, it was preventing most of my migraines, so it was much easier to do vigorous exercise. Now I’ve realized that there are days that I feel best if I stick to walking and yoga.
People have the natural tendency to value things they work hard for. With MdDS and VM, I’ve had to work harder for everything. In turn, I think I am more grateful for the small daily stuff, which it turns out, adds up to be the big stuff.
My voyage, although much smoother now, continues and adventure awaits!