Trying to Turn the Tides

After developing some scary new migraine symptoms, I had taken a month off of work to attempt to turn the tides. (If you haven’t read my last post, Ebbs and Flows, yet, read it HERE to catch up.) I was hoping that a break might help me achieve remission or reach it sooner. At the very least, I was hoping to get my migraine symptoms under control or figure out ways to manage better.  These are the things that I focused on and learned in my “recovery month.”

Sleeping In

I had noticed in the past few months that after I slept a lot, my MdDS symptoms would be at their lowest.  I was hoping to use this time off to sleep as much as I possibly could. Being able to finally get the rest I needed was a huge relief!  I slept 9-10 hours per night according to my Fitbit. Before MdDS, my “normal” was 6-8 hours per night. Through journaling my symptoms, I discovered that on days when I woke up to an alarm, my symptoms were significantly higher than if I slept until I woke up naturally.

Optokinetic (OKN) Stripes

Dr. Yakushin had given me home exercises to do based on how I reacted to the stripes during my visit to Mount Sinai (if you haven’t read that blog post yet, read it HERE).  Using a web application, I would enter the suggested settings and move my head while watching the OKN stripes. Depending on which combination of stripes and head movements I performed, my motion sensations would change, and usually improve, after doing the exercises for 30 seconds to 2 minutes.

For the first 2 weeks of the month, I did the OKN stripes only if my symptoms were a 3 or higher.  I realized after some trial and error that the head movement to correct the sway (watching stripes left to right, moving head up and down), was creating nausea/sickness with head movements and difficulty watching TV or other visual movement.  I figured out that it was better to avoid that exercise entirely and only do the side to side head movements (ironically, just as I was doing on my own before visiting Mount Sinai). I stopped doing the stripes after I hit a point where I felt a significant improvement.  I was getting worse on days I tried to troubleshoot the exercises or did them too much. I also learned that if I felt the movements more in my head than in my whole body, the stripes didn’t help.

I got my baseline down to a 1-2 (out of 10) for the last two weeks of the break.  For me, that means I often feel still or don’t notice the symptoms, and they are easier to ignore.

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Technology

My doctor suggested that computer use was likely making my migraine symptoms worse, so I vowed to swear off technology for a month! I suspended all my social media accounts, logged out of email, deleted my blogging app, and avoided computers and phones as much as possible.  

I only had one full migraine during the break, and it happened after I watched TV for 90 minutes without wearing tinted glasses. I was disappointed with myself at the time, but I’m grateful for it now because I learned that I still need to wear tinted glasses.  

At first, it felt great to take a break from social media.  I didn’t have any FOMO when I was doing nothing, and it was freeing not having to keep up with messages or check alerts. Eventually, I really started to miss connecting with people, seeing photos and videos of fun experiences or milestones, and sharing my own fun moments.  Now that my break is over I’m continuing to limit my time on social media. I’m trying to focus on using it for meaningful, positive activity, and not mindless scrolling.

During the onset of my MdDS, scrolling was one of the most difficult things for me. I had to close my eyes if I wanted to scroll on my phone or a computer.  It eventually got better, to the point where I thought it wasn’t an issue for me anymore. Although scrolling doesn’t make me feel immediately nauseous and headachy anymore, I’ve realized it is still one of my top triggera, usually causing a visible sway.  It was easy to identify once my baseline was low. I can maintain my baseline during other phone/computer functions (i.e. texting, typing) as long as I’m using flux and/or tinted glasses and taking breaks. I know I have to take a break when the right side of my face is going numb.  

Heart Rate

At Mount Sinai, I learned that my motion sensations sync with my heart rate.  My resting heart rate decreased 12 beats per minute during the break. I wear a Fit Bit HR all the time, which graphed the improvement.  Because I rock with my heart rate, that means 12 less times I was rocking per minute, which resulted in a feeling of lower MdDS symptoms overall! The relaxation and sleep were really helping!

Exercise

Working out has been a battle for me with MdDS. Different workouts would mess with my symptoms in different ways, so for months I pretty much stuck to yoga and walking. Not having to worry about having to go to work the next day made it easier for me to increase the intensity of the workouts I was doing and try things, like sprinting or lifting heavy weights, that were difficult in the past months. Although my symptoms are significantly higher during and after challenging workouts, I feel so much better once my heart rate goes down. I’ve been motivated to keep working out because of how much better I feel afterwards. Even just a short walk can distract me from higher symptoms and help me feel better once my heart rate goes back to resting.

The Long Haul

At the beginning of my break, I was very hopeful that within the month I would reach remission.  Days later, I wasn’t feeling like I had made much progress since I left NYC. At the time, I was still constantly feeling motion. I have always been a perfectionist, a planner, and a “to do list” type of person.  MdDS had been chipping away at this part of me since day one, but old habits die hard. I was still in constant “doing mode,” and it was hard to live in the moment and not worry about being “productive.” After a few days off, I felt like I was focusing on my symptoms too much without the distractions of work.  

Having this time to reflect, I realized something huge: my MdDS probably isn’t going anywhere anytime soon.  The times in the past that I thought I was close to remission? I wasn’t. I was way off. How could I think this time it would be different? I had been avoiding triggers in order to “get better faster,” but I had no idea if it was even worth it. The stripes exercises help me so much, but odds are they aren’t going to get me back to a perfect “normal.” The truth is, it hasn’t been serving me to try to control my Mal de Debarquement Syndrome.

Coming to terms with all of this made me really depressed at first.  I gave up on trying to stay positive – it wasn’t possible right then. I allowed myself to really feel the sadness. I cried it out for a couple of days. I grieved the loss of a “normal” future. I had always just assumed I could control and plan out my future, but after the past few months I felt I had to make peace with a level of uncertainty.  

After I acknowledged that I’m likely in this for the long haul, I started seeing the upside of acceptance.  It’s easier to be positive about slow, gradual progress when I’m not comparing myself to the “old” me or thinking about how far I have left to go.  

I’ve had some really terrible days on this voyage that I’ll never forget, but I’ve had more good days on the whole. When I look back at events of the past 9 months, I primarily remember the experiences and emotions, not how much I was rocking that day.  

Accepting that the boat feeling is part of me made it easier to enjoy my remaining days off.  It took the pressure off of me to “recover.”

I’m still hopeful about reaching remission someday, but I’m happy to say I’m no longer counting the days until I’m back to “normal.”  My quest now is learning to live a life I love with MdDS.

August 2018 653

Back to Life, Back to Reality

I’ve been back at work full time for 2 weeks now, and the progress I made this month is apparent. I don’t have as much stillness as I had during the last few weeks of my “break,” but I am feeling good.  Everything feels easier. A huge part of it is because my symptoms are lower, but I think removing the stress of trying to “recover” has helped me stay calm in a world full of triggers.

To fully accept my MdDS, I had to face facts that my days are going to be full of triggers, and I can’t live my life avoiding them. I had to let go of the idea that they were prolonging my illness. Even if they are, worrying about avoiding them was definitely stressing me out, which is a trigger in itself! Thanks to my new, lower baseline I can deal with all my common triggers within reason (i.e. I will never clean the fridge again) and with accommodations (special glasses, breaks, clonazepam, extra rest, etc). I think not having the added stress and worry about “trigger avoidance” makes my body better at dealing with the triggers when they appear.

The boat motions still drive me nuts and make things difficult sometimes, but they are mostly tolerable. I still get the pins and needles/tingling/numbness on the right side of my face, but I learned during this break that rest, relaxation, or exercise help me keep it in check. My light sensitivity seems to have improved the most in the past month. I haven’t felt I needed a hat, and I can get by with new low blue lights glasses with just a slight tint. I haven’t had a migraine in a month (knock on wood).

I am really grateful that I have recovered enough to get to a place where I could be accepting of the symptoms I have. I do know there are probably still some rough seas ahead, but I’m a much more experienced sailor now. I am cautiously optimistic that the worst is over now that I have some tools and coping strategies.

 

Please let me know if you are seeing some improvements, however small they may be!  They do add up over time, I think, and we have to celebrate them! Also, I’d love to know if you can relate to anything in this post or if it’s helped you on your voyage!

5 thoughts on “Trying to Turn the Tides

  1. I was so happy to see you last week—you look amazing! And I’m happy to read you’re feeling more in control of not being 100% in control. Small steps. It’s easy to say for anyone not living your life, right? But you sound like your feelings and emotions are in a good space at the moment. I’ll keep sending good wishes to you!

    Liked by 1 person

  2. I have been reading your blog for the last few days and I am finding comfort in the fact that you have almost every symptom-trigger that I have. I came home from a trip to Italy July 21,2019, couldn’t figure out what was going on.
    Saw my general practitioner, next a neurologist,audiologist who then sent me to a PT that specializes in vestibular disorders.
    I saw her and told her my symptoms I said “I think I have MdDS ?” She said “you absolutely do”. In her 20 years of PT she has treated about 10 cases of it.
    Well finally someone that agrees with me.
    So for the past 75 days or so I have been doing physical therapy, ocular therapy, acupuncture and hooking myself to an Alpha-stim device.
    I head to NYC tomorrow for treatment at Mt. Saini.
    Fingers crossed 👊🏻
    Thanks for blogging about this crazy disorder.
    Mary Prince
    Franklin,Tn
    #kissmyassMdDS

    Liked by 1 person

    1. Mary, I love your hashtag! 😂 Wow yes I’m glad you found someone to confirm what you were thinking, and that you e found comfort reading this blog! I always find comfort in others relating – our symptoms are so strange and hard to understand, it can feel very isolating.

      Like

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