New Treatment and New Gig

New Treatment

For the past 3 months, I’ve been using Timolol Maleate 0.5% eye drops, which are prescribed to treat Vestibular Migraine (VM).  My neurologist prescribed them with the hope that by reducing my VM symptoms, my MdDS symptoms would also decrease. He recommended using one drop in each eye twice daily for symptom prevention, and an additional dose at the onset of a migraine or during an increase in dizziness or vertigo. 

For the first month, I didn’t notice much of a difference in symptoms with regular use.  I did recognize that the drops took an edge off any head pain, so I kept using them.  

Then, one day, my visual field started swaying violently, back and forth like a boat, and I put the drops in.  Just like that, the visual motion calmed down significantly.  I was so relieved!  

A few days later, it was storming, and I picked up a book to try to read.  The words were moving in a U shape, making it impossible to focus on any word.  I went and put the eyedrops in, and like magic, the motions calmed down enough so I could read again!  

Before the eye drops, I was unable to work on a computer or read when I would have these “episodes.” Having the drops has been a total game changer!  The other medicines I had tried for migraine or dizziness attacks made me too tired to function, but with the drops, I could go on with my day.

After about 6 weeks, I would estimate that using the drops resulted in a 10% decrease in the feeling of rocking, bobbing, or swaying caused by MdDS. 

They don’t work perfectly, and there are times I still need to use a stronger rescue medication, but I have to say, these drops have significantly improved my quality of life.  I love that they are portable, I can use them anywhere at any time, and that I haven’t had any side effects from using them. 

I hope that they might help you, too!

I first heard about the eye drops from this video.  I was especially excited to find this video because Dr. Beh specifically mentions MdDS!

New Gig

In the early days, pushing through my highest symptoms, one thought always prevailed: “How do I live like this?” I asked medical professionals, and I got some prescriptions, but it was never enough to actually help me get through the day-to-day struggle. The best ideas and strategies were from my friend, Kelly.

Kelly and I have exercised together every week since we first met. The first time we hung out, we did a 10 mile run! After my MdDS onset trip, our “exercise” sessions turned into slow walks. Kelly accompanied me and listened to me talk about all the strange symptoms and sensory issues I was experiencing for months.

The amazing thing about Kelly is that for every one of my new challenges, she gave me a strategy or work-around to try. She is an occupational therapist and has specialized training and experience in helping people with vision and sensory issues, daily activities, fine-motor skills, and so much more.

I’m a speech-language pathologist, and although I love my career, the sensory aspects of my work environment (lights, crowds, noise, visual motion, patterns) were very draining. I needed a change.

I wanted to continue helping people with cognitive, learning, and communication needs, and spend more time helping people with vestibular disorders. I’ve dedicated so much time to studying dizziness, vertigo, and migraine in my own quest for healing, and I wanted to use what I’ve learned and experienced to be a catalyst for positive change in the lives of others.

I decided to create my own job. I want to be the person that helps answer the question, “How do I live like this?” for other people struggling to get through the day. I knew that if I was going to do it right, I would need Kelly with me. Luckily, she agreed!

I’m excited to announce that we are launching our business, Solutions for a Better Day! We want to coach you through difficult times and give you actionable steps, strategies, and support to reach your goals despite the dizziness.

If you would like to learn more or are interested in scheduling a phone call or video chat session with us, please visit our website or message me! I’d love to meet with you!

Wishing you wellness and stillness as always!

Sandy

My Top 3 Coping Strategies Right Now

These coping strategies have been helping me lately and guiding my quarantine self-care:

  1. I make my exhales longer than my inhales.  It’s super simple.  I can do it anywhere at any time!  It helps keep my stress levels down and helps me relax and fall asleep when symptoms spike.  
  2. I ask myself:  If I was taking care of a little kid who had the same exact symptoms as I have right now, what would I do for them?  Then, I do it for myself.  It’s weird as adults we make ourselves do things that we would never make little kids do if they weren’t feeling well.  Before I made this rule, I’d make myself finish all my work tasks before resting. I’d eat pizza and chocolate and drink wine to “treat myself.”  I’d wait to refill my water bottle until I had a break in my schedule, even if I was thirsty.  I’d be feeling upset, and I’d make myself keep it together until I got home.  I would NEVER make a kid do that, so why would I make myself do all that?  Now I make sure I have water when I need it, eat nutritious comfort foods, let myself feel my feelings and recover, distract myself with calming and engaging activities, allow myself to rest or nap, that kind of thing.   
  3. I deliberately make time for mental stillness.  Before MdDS, if I was stressed, I had a tendency to push or work harder, put more time in, pack my weekends with fun things, etc. I realized immediately after my onset of symptoms that my old way of doing things wouldn’t work for me anymore, but it took me a while to recognize that I needed to make mental stillness a priority.  For me, that means journaling, stretching, going for walks, listening to guided meditations (I like Tara Brach’s podcast), engaging in hobbies like painting, going for weekly forest hikes with my husband, and spending quality time with loved ones (without technology involved).  I love the book Stillness is the Key by Ryan Holiday.  It really inspired me to seek out more opportunities for stillness, and it takes on another level of meaning as a reader who never experiences the actual sensation of stillness.  (If anyone ends up reading it, I would love to discuss it with you!)

What are some of your best coping strategies?  Any thoughts or ideas that help guide your self-care? 

Adjusting the Sails

Mal de Debarquement Syndrome creates a lot of daily challenges.  The “boat sensations” are constant, and I’ll get caught off guard by random spins or pulls, a flare-up of symptoms, dizziness with head movements, or head pain.  I decided to stop taking any and all prescriptions for a while, which has made the seas less predictable and more tumultuous at times. Accepting that I can’t always control my symptoms helped me seek out ways to control my attitude and reaction to them.  I’ll explain some causes of the changing tides of the last few months.  

I have all the symptoms of Vestibular Migraines.  I realized this in November after I attended a presentation about differential diagnosis of dizziness, and asked my neurologist about it.  He referred me to a new ENT, who said my symptoms clearly fit with a VM diagnosis in addition to the MdDS. They could be 2 separate issues, or the VM symptoms could be my brain’s way of dealing with or attempting to heal from the MdDS.  All the symptoms started at the same time, and it’s possible they could end at the same time. I’m holding out hope that this is the case. 

The prescription migraine preventative I was taking was possibly impeding my brain from self-healing from the MdDS. I had been taking cyproheptadine daily since April 2019 to control my migraines. The ENT explained that it is a suppressant in the same way that clonazepam is.  While it is suppressing symptoms it is also suppressing healing and progress.  It would be better for my brain to have higher symptoms, do the OKN stripes home treatment, and only take the medication as needed.  I stopped taking it daily on New Year’s Eve.

Sorting through GI issues has made the MdDS more challenging.   In late November, I suddenly started having chest pains and a spasm-like feeling in my chest.  It felt really overwhelming to have another source of internal movement! I think because of my experience having little success with doctors or long-term solutions with MdDS, I had a hard time being hopeful about it resolving.  It was also a challenge to deal with a second source of daily pain and discomfort. The process of figuring out what was wrong wasn’t easy, and it’s still not totally clear. My symptoms escalated and got much worse over the next few months until I was able to figure out some things.  Turns out I’m allergic to carrots, lettuce, and coconut. I had an endoscopy, where they found gastritis in my stomach. I also found out from a doctor friend (thanks, Alex!) that stopping the cyproheptadine likely messed with my microbiome, significantly exacerbating the original problem.  If I eat a food I’m allergic or sensitive to, I start feeling more boaty and dizzy in addition to the GI symptoms. I’ve had to completely change my diet to cope (anti-inflammatory, no milk, no acid, no sweets, etc.). The dietary changes have not improved my baseline MdDS symptoms at all, but avoiding trigger foods prevents a spike in symptoms. 

I’ve experienced too many side effects from prescriptions lately.  If a possible side effect of a medication is dizziness, it makes me dizzier. I’ve had to try a number of prescriptions and go under anesthesia for the GI issues, and they all made me feel worse than before I started taking them.  I had new, more severe GI symptoms and dizziness/lightheadedness from every prescription I tried. It took me over a week to recover fully from the dizziness caused by anesthesia.  I also think being on anesthesia made me emotional and brain-foggy for a week. It sucks that being on the cyproheptadine long-term likely impeded my healing and contributed to my GI problems.  I think being neurologically sensitive from the MdDS has made me more sensitive to literally anything I put in my body.  All of this led to my decision to stop taking any and all medications. I’ve been prescription-free since March 1st, which has its ups and downs, but I’m very hopeful I’m on a path to healing… without any side effects.   

I have to seek out advice and knowledge and make my own decisions about what works (and doesn’t work) for me.  I’ve finally learned to trust myself and take care of myself in a way that I didn’t before. I grew up just trusting that doctors would solve my medical problems.  Although they are a great source for advice or information, doctors don’t really know what is going to work for me, specifically, especially with the MdDS. There isn’t enough research or clinical knowledge out there.  No one knows how my sensitive brain (and gut apparently) will respond to anything. The only way to help myself is to get advice and experiment. For example, I realized that the only way to know if my migraines are a disorder or my brain’s healing mechanism is to allow them to happen for a few months and see what happens.  I had to figure out my own food triggers and sensitivities by cutting things out, keeping a food log, going to an allergist for tests, and researching. 

Invisible obstacles create invisible changes.  Because of all this, I’ve made progress in taking control of my mindset.  My symptoms haven’t been better, but my attitude is so much better.  Having so many daily obstacles has created no shortage of opportunities to build resilience.  I’m really hopeful that my symptoms will improve in the future, but in the meantime, I needed tools to make the most of my days right now.  I’ve realized it’s not about fixing myself or getting to some “perfect” place where I handle everything with a great attitude immediately. I still cry and freak out and have really tough days or hours or seconds, but I’m also getting really good at pulling myself together and then actually taking action to make things better and control what I can instead of complaining.  I know that habits or changes take time to make an impact, so I’ve gotten better at sticking with it and honoring my commitments to myself.  I’m better at failing and then learning from it and trying again with more knowledge. I’m trying my best to make my thoughts positive and supportive; some days it’s easier than others.  I’ve realized that I have the power to make the events of my day and life bigger and more important than any symptoms or how my body feels. I try to keep doing things even though I have to do them alongside dizziness or pain or discomfort.  I’ve realized that I don’t have to feel good to have a good day. I cannot direct the wind, but I can, and will, adjust the sails.  

How have you adjusted the sails to live with MdDS? Let me know in the comments or on instagram (@lifewithoutlandlegs)!

Wishing you many things to be grateful for, wellness, and stillness, especially in these challenging times. I hope we can all continue to adjust our sails for the unpredictable climate.

Between the Devil and the Deep Blue Sea

To boat or not to boat? That was the question on my mind as summer was fast approaching. Most people said, “Are you crazy? Why would you want to go on a boat?” I probably am crazy, but something about being told I could never go on a boat again made me want to do it even more. 

I furiously searched the internet for advice, finding a strict “no boats ever again” theme. If you have MdDS, it is recommended that you completely avoid boats for the rest of your life. I cried as I considered avoiding boats for the rest of my life. If I had been in remission, I don’t think I would have even been considering going on a boat, but I’d had MdDS symptoms continuously for over a year.  It seemed like if I was going to do it, now was the time.  What if I go into remission and then I can never go on a boat again? What if this is my last chance? 

I continued searching the internet in vain, ending up with more questions than answers.  Has anyone actually ever regressed completely from a motion event while still symptomatic? Am I just fearing and avoiding motion experiences for no reason? Could one boat ride really set me back that much?  Is there any precautions I can take?  Is there a certain length of time that I could tolerate?  What if, somehow, I got off the boat and felt normal again?

I realized the only answer to any of these questions: I don’t know.  No one knows how a boat ride or anything else will affect me.  The only way to find out was to try it.  This curiosity, mixed with a fear of missing out, won out.  I texted my friends, “I’m in!” for the upcoming boat ride. 

Fast forward a few weeks, and it is time to get on the cabin cruiser.  I was fully aware that is was quite possibly the stupidest decision I’ve made in the process of healing. I tried to act cool for my friends, but I was pretty nervous.  Turns out, everyone else was pretty nervous, too, and trying to act cool for me.  I took .25mg clonazepam the night before and another .25mg 30 minutes before stepping onto the boat. 

It was a gorgeous sunny day, the water sparkling blue.  I felt great relief to have an actual, real, true, normal feeling of being on a boat. Being able to move freely and swim and just see things normally and feel normal. It was a beautiful day. I was having a great time with friends. I was so glad I did it.

I forgot about the fear, until it was time to disembark.  Would the world be bobbing harder?  Would my head pressure return?  Would my light sensitivity worsen?

I stepped off the boat on to the dock and walked a bit. I still felt like I was on a boat of course, but it was only a little stronger than my baseline. I was cautiously optimistic that it was a success! As the evening went on and my boat feeling was stronger than usual, I tried to enjoy the moment and push down the worry that I had screwed myself over. Everyone at the table was feeling a bit “on the boat” at dinner, so I hoped after a night of sleep I’d be back at baseline.

I woke up the next morning and I was…. back to baseline as far as I could tell.  The only side effect seemed to be that I was very sleepy, but that might have been from the clonozepam.  In this battle of brain vs. boat, my brain won! Conquering the boat got me thinking… what else should I try while I’m still symptomatic? 

Here are the things I’ve tried, how it went, and some accommodations that helped me.  It is important to note that:

  1. Everyone is different, so you may not have the same reaction as me.  I’m not recommending that anyone do this at all, I’m just sharing my experience.
  2. I had my vestibular migraine type symptoms controlled with cyproheptadine (4mg daily) before trying all of these experiences.
  3. I had a low baseline (1-3) before trying all of these things.  I think most of these would have made me really sick when I had a higher baseline.

If you don’t want to read the whole post, this is the most important thing that I learned: If it makes me motion sick, it is going to make my symptoms worse. If I have a motion experience without feeling motion sickness, any changes in symptoms are usually temporary or mild (or non-existent).

Boats

After this experience I went on 3 other boat rides.  All were on a lake.  For the first two, I took clonozepam, and had no long term uptick in symptoms.  One ride was under 2 hours, and I felt back to normal later that day after a nap. The longer ride took a full night of sleep for me to return to baseline.

I also went boating 2 days in a row, without clonozepam, but with breaks walking on land.  These increased my symptoms that night and then for about a week after (from 2-3 to 3-5).

Riding a Bike (Outdoor)

I went biking for about 30 minutes, and I felt motion sick the whole time.  It was wonderful to be outside, and I enjoyed the ride overall.  I felt higher symptoms after, and they got even higher at work the next day.  After the ride I had intended to try it again, but it ended up taking me about a week to get back to baseline.  For now, no bikes for me.

Riding a Stationary Bike

It’s strange, but when I’m riding a stationary bike I can’t feel any motion sensations (just like a car).  I’ve been riding it a few times a week lately, with no increase in symptoms afterwards!

Kettlebell Swings

If you’ve read my other posts, you might remember that for some reason kettlebell swings seem to be a trigger for me.  I decided to try it again while at a workout class, and after a swing or two I started feeling motion sick.  I stopped right away, but I ended up having higher symptoms for the evening.  I’m glad I tried it, though, because this was when it dawned on my that if it makes me motion sick, I have to stop immediately or deal with higher symptoms.

Electric Scooter

The scooter ride was fun, but had me feeling motion sick immediately.  I didn’t experience an increase in symptoms, just the feeling that I was on a scooter for the next few hours.  It was fun to try, but I don’t think I’d do it again.

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Treadmill

I tried running for one minute, then five minutes.  For the remainder of the day my motion sensations changed direction and were more intense.  I had some higher symptoms for the next few days.  After this experience, I’ve decided it isn’t worth it for me to use a treadmill again.  Luckily, when it is bad weather, I can use the stationary bike now!

Floating Down a Lazy River

I did this a few times with no motion sickness and no increase in symptoms!

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Airplanes

I’ve flown quite a few times since I visited New York to go the Mount Sinai.  I haven’t felt motion sick on the flights (I always make sure to hydrate and sleep a lot the night before).  I flew to NYC without any meds, and remained at baseline.  I have flown up to 5.5 hours taking .25-.5mg clonozepam, without any increase in symptoms afterwards.

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Virtual Reality Ride

I recently attended a fundraiser at Epcot, where our group was directed to ride Soarin’, a virtual reality hang-gliding around the world experience,  before getting on the bus.  I was planning to avoid the ride, but I decided to explain my situation to one of the ride’s staff before writing it off completely. He told me to request special seating for motion sickness (center of the screen, front row), and that the seat didn’t move much, so it would be okay to just close my eyes if I felt motion sick.

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I was nervous leading up to the ride, but it seemed like it wasn’t a big risk since I could just close my eyes.  I really enjoyed the ride, but I only kept my eyes open for short “snapshots” of it.  I did not get motion sick, and I didn’t have any increase in symptoms.

Rollercoaster

And you thought I was crazy for going on a boat?!  If you follow me on Instagram (@lifewithoutlandlegs), you know reading Harry Potter got me through the early months of MdDS.  I went to Universal Studios for an event, and I really, really wanted to experience the Harry Potter Escape from Gringott’s ride, a roller coaster with 4D scenes.  I had my clonozepam in tow, but I was seriously TERRIFIED before getting on the ride.  Usually the motions of a roller coaster are NOT something you want to relive while walking around, trying to sleep, etc.

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I pushed through and forced myself to ride, despite my own better judgement and the list of warnings that all applied to me (i.e. do not ride if you have a neurological disorder, do not ride if you are sensitive to strobes, do not ride if you are prone to motion sickness).  The ride ended up being really fun and exhilarating! I had a huge adrenaline rush partially from the ride, but mostly from conquering my fear!

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I took .25mg of clonozepam afterwards, so I felt pretty good and tried a few more rides that evening.  When I went to bed that night, I felt like I was sleeping on a conveyor belt, but the feeling was gone the next morning.  This was a huge win for me!

Learning My Limits

By embarking on all of these “motion adventures,”  I’ve tested and learned my limits.  Before trying these things, it was parse out what motion events were triggers or not because my symptoms were high all the time from a lot of different factors. Now, I know that the motion sickness itself is the trigger, not the motion event.  Avoid the motion sickness, avoid the uptick in symptoms.

I have always had a huge fear of missing out (FOMO), which I think has actually helped me to push through and live my best life despite having MdDS. I pushed my self to do some of these things because I love a good experiment, but mostly because I didn’t want to miss out on the experience with friends and loved ones.  Even the things that made my symptoms worse were worth it for the experience.

Do I think trying these things has “set me back” or “put me further from remission”?  Probably not.  I honestly think that things I can’t control (weather, hormones, unexpected stress) are the only things that seem to create consistent, long term changes to my symptoms.  The motion sickness is only a short-term trigger, not something that sets me back significantly.

I’d love you hear if you’ve had any motion adventures or if you can relate to anything in this post.  Wishing you wellness and stillness!

One Year Without Land Legs

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! 

 

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!

Ebbs and Flows

Where we last left off I had just come home with a renewed sense of hope after attending treatment at Mount Sinai Hospital in New York City.  I had made improvements, but what really excited me was the idea that remission was within reach. If I could just avoid my triggers for a few weeks, maybe a couple of months, I would be in remission.  After I posted my experiences at Mount Sinai, I got lots of messages from other people who had attended and went into remission soon after. A common thread in almost all the messages was that it took about 2 months.  For most people, the motion sensations gradually reduced until one day, things just seemed normal.

Recovery Ready

I’m a total type-A perfectionist, so I went to work readying myself to create what I hoped would be “ideal” healing conditions.  I was armed with face-wrapping orange glasses and new baseball caps to shield me from the bright lights and screens that always seemed to trigger my symptoms.  I was ready to use all the relaxation techniques I had practiced to keep my heart rate down. If anyone was going to reach remission, it was me! I was going to try to do everything I could to make it happen.

The days the followed were a lot more difficult than I had anticipated. The weather was terrible. Lights looked like they were flickering to me, even wearing all my gear.  I didn’t feel confident in my new hat and glasses look, but I was too scared of a reversion to take them off or switch back to my pink migraine glasses. My days were long, busy, and stressful. I would forget to use relaxation techniques. Most days I was too exhausted to scrounge up the motivation to go to yoga class or walk in the icy weather.  I was bone tired all the time and needed more sleep than usual. After a day at work I needed sensory deprivation, even watching TV seemed overwhelming.

Although my rocking/bobbing/swaying felt significantly lighter and easier to deal with after treatment, this invisible progress was very hard to explain.  It felt like most people expected me to come back from treatment back to normal, and I wasn’t. I was happy with my progress, but I had to explain that wasn’t “cured.” It was hard seeing people’s disappointment, even though I wasn’t necessarily disappointed about it myself.  Seeing the reactions of others made it harder to appreciate how far I had come. It was a frequent reminder of how far I had left to go.

After about 3 weeks of orange glasses, hats, and my best efforts at trigger avoidance and relaxation, I was becoming pretty miserable.  Although I was maintaining my progress, I felt like a failure, unable to “stay relaxed” while coping with things that were chronically stressful and a few particularly stressful surprises. I usually deal with stress best by getting out and having fun with loved ones, but in my quest for full “trigger avoidance,” I was opting out of fun things. Staying home reading when I really wanted to be out doing things was compounding my sadness. Trying to control my symptoms was making me miserable, especially when life kept throwing curveballs my way.  

On Pins and Needles

You know that feeling you get after your foot falls asleep?  It feels like tiny pins and needles moving quickly inside your skin.  I started to get that feeling between my right eye and right temple, about 3 weeks after returning from NYC. It was mildly annoying. One night, the pins and needles moved to the left side of my face, then to my left arm, then my left leg.  The tingling was constant. I tried to keep calm. I told myself it was probably just some weird MdDS symptom I hadn’t had yet. I had a MRI scheduled for the next morning (to rule out any structural causes of my continuing migraines and MdDS symptoms), so I tried to stay calm and told myself that answers were coming.  

I took Lorazepam for the MRI, but it didn’t help.  I was in the machine while the numbness moved around the same spots.  Later that night, the pins and needles spread to my whole body. One minute my tongue would be numb, then my throat, then both my feet, then my cheeks, and so on.  It would move around to different spots or multiple spots at once, but it was constantly there. Sometimes it felt more like a tingling, sometimes a burning, and sometimes a numbness.  I would repeatedly check in the mirror to make sure my face was still moving symmetrically. I looked at my hands to make sure they weren’t turning blue. The feeling was coursing all around my body, all day long while I was rocking like a boat. It was overwhelmingcomplete sensory overload. I wanted to get out of my body.  

I cycled through negative and scary questions on a loop: Am I dying? How am I going to live like this? What is happening to my body?  Do I have MS? I’m already miserable on a boat, how am I supposed to push through this, too? It was hard to concentrate on anything. I was scared.  I knew if there was something major wrong with me that it would show up in the MRI, but I was afraid to get more bad news. I worried that even if the MRI was normal, this numbness would be another life-altering sensory issue that doctors couldn’t help me with. Nothing the doctors suggested or that I tried worked to stop the sensation.  

The full body pins and needles lasted for 3 more days without a break.  Inside, I was a complete wreck, anxious and frustrated. No one could see or feel what I was going through, and it was hard to describe.  My whole day felt like a constant struggle, a countdown of moments until I could go to sleep. On the third day, I started to become extremely sensitive to sounds and more sensitive to light than usual.  I remember sitting in a meeting, feeling like I was underwater, watching people’s mouths move and trying to make out the words. When I got home from work, the tingling started going crazy around my eyes and forehead.  My vision started to darken on the edges. My head was pounding. When I realized it was a migraine, I started to panic. All I could think was, I am going to lose my progress. The progress that I have been trying so hard to control and keep is going to be gone when I wake up. I tried to stand up, and the room whirled around me. I bawled in bed until I fell sleep, in pain and exhausted. I woke up 12 hours later.  The pins and needles were finally gone. But now I could see the room swaying.

My MRI was normal.  My neurologist determined that the pins and needles were likely a migraine aura or part of the MdDS.  I never had regular migraines until I had MdDS. After battling the boat for 8 months without medicine, I started taking Cyproheptadine as a migraine preventative.  I was able to email Mount Sinai and get home program of optokinetic (OKN) stripes to try to regain the ground I had lost after the migraine. It helped to get some answers and have some things to try. However, the whole experience was kind of traumatic.  I was already scared of triggers and bad MdDS days. Now I was terrified of having another week-long numbness episode, too. The future seemed more complicated and more unsure than it had when I left New York, full of hope and positivity for remission.

I struggled for 3 more challenging weeks, full of ebbs and flows in MdDS symptoms and migraines.  One day, I’d be rocking, I’d do the OKN stripes for the rocking for 2 minutes, and I’d have low symptoms for an entire day.  I would feel so relieved and excited and hopeful! Then, I’d get retriggered somehow within the next 24 hours. Sometimes, the OKN stripes caused frustrating difficulties with head movements or nausea instead of improvements.  Sometimes I’d have a good morning, but then my symptoms would creep up steadily throughout the workday. I was still getting migraines, all of them preceded by numbness of my face. I started getting new auras, too, like black spots in my vision.  Sometimes I’d be numb, but I wouldn’t have head pain. Stressful encounters left me seeing the world swaying again. I couldn’t hold on to a good day. The bad days felt more devastating after a good stretch.

The inconsistency was exhausting.  I felt completely out of control. I would wake up in the morning with no idea what my body would feel like. I was always worried. Should I do this?  Do I need to avoid this? Can I make it through this day, this hour, this minute? Is this just routine numbness or is a migraine coming? Why are my MdDS symptoms high today? Why can’t I maintain my baseline?

Changing the Tides

Loved ones, coworkers, and doctors started to suggest that it was time to take a leave from work. At first, I steadfastly refused. I’d had worse rocking than this and pushed through. Even though I feel crappy all the time, I’m still capable physically and intellectually, I thought. I had been working full time for over 7 months with MdDS. I wanted to prove to myself that I could push through it. I worried that other people would think I was lazy or exaggerating or not dedicated if I took a leave of absence. I had this false belief that if I could not keep working that it would mean I wasn’t strong enough or courageous enough. Truthfully, I was more scared to take a leave than I was to keep working.

Then one day, after a stretch of good days, I woke up the next morning to strong swaying again. The sway felt more forceful as the day went on and my frustration grew with it. I walked the halls at work, watching the floors move under me. I felt seasick. The right side of my face went numb. The pins and needles spread to my hand.

I couldn’t take the ebbs and flows. I needed time. I needed more sleep. I needed a break. I couldn’t stop the waves, but I could start taking care of myself in a way I hadn’t yet tried. Admitting this at the time made me feel like I had failed. But it was undeniable that pushing through each day in the state I was in, physically and mentally, was making things worse. I had to take some time to concentrate on healing. I picked up the phone and called the doctor, who agreed. It was time to take that leave.

After 8 months of fighting the boat feelings every single day, my eyes filled with tears at the precipice of a month of rest. Would I go into remission? Would things stay the same? Would a month be long enough to change the tides? I was excited and scared to find out…

… and you’ll have to wait for the next post to find out! I will say that I’m doing pretty well. I’ve missed you! Please let me know if there is anything in this post that you’ve connected with or if you’ve had a similar experience!

 

Steering My Ship in the Right Direction: Mount Sinai

There are not a lot of treatment options available for people with Mal de Debarquement Syndrome. There is only one evidenced-based treatment proven to successfully diminish or eliminate symptoms in most patients. The treatment is VOR (vestibulo-ocular reflex) readaptation, which is only done at The Mount Sinai Hospital in New York City.

Preparing for Travel

After hitting the 6 month mark, it started to become clear that I wasn’t going to spontaneously recover anytime soon.  Suggestions and posts from other MdDS warriors helped me realize that it was time to try Mount Sinai. I had been scared to do it before, especially because air travel seemed to be a factor in my onset.  Seemingly out of other options, I decided it was time to bite the bullet and give it a shot.

It took about a week to schedule my appointment after I turned in my intake forms.  When I first got the email, I was so excited! I couldn’t wait to finally talk to someone knowledgeable about my symptoms and start improving.  

As the trip approached, I started to get very anxious about it. My rocking and swaying increased. I stopped sleeping through the night, waking up screaming from transportation-related nightmares.  The frigid, snowy weather wasn’t helping either. My body hurt from tension, even my hands were sore.

Two main fears were stuck in my head:

  1. What if the treatment doesn’t work?
  2. What if I am re-triggered by the flight home?

I did a few things that stopped these fears in their tracks:

  1. I got a deep-tissue massage.  It lowered my MdDS symptoms almost immediately and relieved my muscle tension.
  2. I wrote a list of powerful, positive, and realistic affirmations.  I read them to myself each time the fears came back. After a few times of reading them, it was like giving myself permission to let go of the fears.  I proceeded confidently into the trip, knowing I was doing the right thing.
  3. I asked some other MdDS warriors about their experiences, which helped me mentally prepare and know what to expect.  (Thank you for your help!)

If any of you are going through the same thing, here are my affirmations below. Maybe they will help you develop a hopeful and positive mindset, too!

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The Trip Begins

During the plane ride to NYC, I used earplanes earplugs, took Benadryl, wore FL-41 glasses, and used a neck stabilizing pillow to keep my head and neck straight.  I tried to look around now and then to engage with my surroundings. I listened to podcasts, read a book at eye-level, and took a nap. When I landed, I felt the same amount of motion as when I got on the plane – no dreaded worsening of symptoms!  It was a successful first plane ride.

We arrived the Saturday before treatment. At first, navigating NYC with MdDS was a shock to my sensory system.  The streets are filled with people moving in all directions, loud noises, patterns, and lots of bright, flashing lights.  I had to focus on walking, it was too hard to glance down at the maps app to figure out where we were going. Luckily, I had my husband with me to do the navigating and walk arm-in-arm with me, which made me feel much more comfortable and stable.  We were able to visit some cool places, and I started to feel more relaxed and happy to be away from my normal responsibilities. The weather was cold, but still much better than back home, so it was refreshing to be able to be outside and walk places.  Overall, I was feeling better in NYC than I had when I left. When I left, my symptoms were ranging from 5-7 out of 10. After getting over the initial shock of NYC, I was relaxed and mostly ranging from 3-5 out of 10 before I began treatment.

Treatment

I went to treatment for 5 days, for around 30-90 minutes each day.  The treatment is called VOR readaptation, and the procedure is described HERE.  It is essentially “retraining” the brain in order to reduce sensations of motion.  Basically, I sat in a booth watching stripes move, sometimes with the neuroscientist moving my head, sometimes while looking at a dot on the wall.  After a minute or two of this, I would come out of the booth and report what motion sensations I was feeling. My motion sensations would typically change each time after the stripes treatment, which showed me right away that it definitely works!  

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Dr. Yakushin, the neuroscientist providing the treatment, could often just look at my posture and determine what motion sensation I was feeling.  It was amazing!!! After months of feeling like this was something only I could see or feel, it was so incredibly comforting to have it confirmed by another person!  

He would determine what to do next in the booth based on my reaction.  He was truly an expert at administering this treatment and deciding what was best for my specific symptoms.  Months earlier, I had tried to do stripes at home with a physical therapist (see my previous post for more on that), which I realize now that we didn’t know nearly enough to do it correctly. The high level of Dr. Yakushin’s experience and knowledge is something that cannot be matched by another medical provider right now.  In conclusion, the treatment is likely not something you can just figure out and do to cure yourself without background knowledge. If you think you need this treatment, go to Mount Sinai if you can.

As the days went on and I was improving, I would have to go to different rooms or spots in the laboratory (walking in the hall, standing in a small closet, walking between filing cabinets, standing in a brightly-lit restroom) in order to trigger my symptoms and report them.  

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Here I am, triggering my symptoms in a bathroom stall!

After the first day, I had a pretty big headache.  Going into treatment the second day, it was snowing and I had a migraine with sharp, one sided pains. As I spent time in the booth, I felt my headache easing up, until it was practically gone! On the subsequent days, I felt much better than I’ve felt in months, with reduced headaches and lower, gentler sensations of motion.

Progress

To measure progress, I stood “still” on a Wii board, which measured the teeny-tiny motions that I was unknowingly making due to my boat feeling. I can’t give you an in-depth explanation of the graphs because I don’t know enough, but I think it serves as a good visual representation of my improvements.

Here is the graph before treatment (top) and after (bottom):

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Anecdotal progress and changes:

Symptom Before Treatment During/After Treatment
Feeling Motions Ranged from 3-7 out of 10

Motion patterns easy to identify and pinpoint (mostly swaying, rocking, rotation, forceful gravitational pull)

Constant

Ranged from 1-3 out of 10

Motion patterns difficult to pinpoint, when identifiable feel gentler, no forceful gravitational pull

Occasional instances of stillness or sensations of motion only felt in my head, not felt in my body

Seeing Motions Near constant visual perception of swaying and rocking

Perceived vision switching from eye to eye intermittently

Visual perception of motion and perception of eyes switching only when symptoms are at a level 3
Migraines Constant forehead pressure

Sharp, one-sided head pains

Reduced forehead pressure

No sharp head pains

Light Sensitivity Needed protective eyewear in bright environments, could feel immediately when eyewear was needed Able to tolerate lights without protective eyewear during treatment

Need for protective eyewear returned the day after treatment ended

Trigger Recovery 30-60 minutes required to return to baseline level after exposure to a trigger 0-15 minutes required to return to baseline level after exposure to a trigger
Sleep Difficulty sleeping through the night without weighted blanket

Woke up from rocking sensations

Slept through the night peacefully without a weighted blanket
Other Held on to my husband to feel comfortable and stable walking in the city

Scared to explore alone

Difficulty multitasking while walking (looking at phone or map)

Difficulty navigating crowds

Walked around alone and explored the city, using my phone and map

Increased confidence in going to unfamiliar places

Navigated crowded restaurants and streets without assistance or fear

Overall, the treatment resulted in a significant reduction of my MdDS symptoms. Emotionally, I felt happier and more confident doing a variety of activities after treatment.  As the days went on, I was joking around more and in a better mood.

One of the days, I left treatment feeling so still.  As I walked away from the lab, it was a strange experience to feel close to “normal.”  It was a feeling I hadn’t felt in so long! I starting walking on planters like they were balance beams, smiling and laughing.  I cried tears of joy. I started to get overwhelmed with a mix of strong emotions – an incredible sense of relief, hope for a better future, sadness about the difficult months I’d endured.  With these waves of emotion rolling in, of course, that old boat feeling started again. At least this time it was much gentler.

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Answers and Guidance

I will try to describe to you what I learned, putting it in my own words, to the best of my knowledge.  MdDS is extremely complicated and hard to understand, so make sure to take everything I’m describing with a grain of salt, understanding that it is my interpretation of what I heard.  

The first, most important piece of information I gained, was that I rock (or bob, sway, etc.) with my heartbeat.  If my heart rate is high, my rocking is high. If my heart rate is slow and steady, my rocking feels slower and lower.  That is why caffeine makes my symptoms skyrocket and high-intensity cardio makes me rock hard. It also explains why relaxation, massages, and one cocktail or glass of wine make me feel better.  

Another thing I learned is that everyone with MdDS rocks differently, not always with their heartbeat as I do.  That is why we all have different triggers or things that help us feel better. Knowing this helps me not to get discouraged when something doesn’t work for me that worked for others with MdDS.  Each of our brains made different connections trying to self-heal from MdDS, and those connections result in our different, individualized triggers and helpers. What helps one person with MdDS may not help another, and that is okay.  

The theory is that after the onset of MdDS, the brain starts the process of trying to fix the problem.  In an attempt to heal itself, the brain increases in sensitivity and all body receptors go on high alert.  This is what causes the strange new sensory issues and symptom triggers that people with MdDS experience, which in my case are things like light sensitivity and difficulty with enclosed spaces.  For other people, it could even be increased rocking upon urination due to sensitive bladder receptors, or a plethora of other strange and challenging new symptoms. Also, many MdDS patients, myself included, are very sensitive to substances like medications or supplements, and should take about half of the normal dose prescribed.  

My migraines or headaches changed based on my experiences with the stripes.  It is likely that when my MdDS goes away, so will my migraines and headaches.  For now, it is important to prevent them by reducing anxiety, avoiding triggers, and wearing sunglasses and low blue light glasses.

I have also noticed in the past few months that I would relive other motion experiences. not just the boat feelings.  I gathered a list of strange things I thought I was reliving – rolling chairs, electric toothbrush, neck massager, kettlebell swings, and elevator rides.  I learned that this is commonly reported by other patients with MdDS, and it is best to avoid those things when possible.

The Trip Home

The dreaded day of the flight home arrived!  I was pretty calm with low symptoms until it was time to pass through LaGuardia Airport Security.  I had to take off my hat and glasses and get my bag searched, which got my boat feelings stirring. After this, we walked to the gate, and I was completely overwhelmed.  The crowds, the noise, the floor patterns, screaming children, the lights, the weight of my backpack, plus knowing I needed to avoid triggers, and being closer to that intimidating plane ride, I lost it.  I sat down and started to cry. Then, I put on my big girl pants, took a clonazepam, and went with my husband in search of a more sensory-friendly environment. We found it across the terminal in the “American Airlines” area, where it was almost entirely empty, quiet, and fairly peaceful.  

I took the other half of my clonazepam pill as we boarded the plane, grabbed a seat in front of the wings, and got my other travel precautions ready.  When we touched ground, I felt pretty good. We exited the plane and walked up the ramp, with only a little bit of that same old boat feeling. Success!  I had made it!

Recovery

The two weeks following treatment will be the most important for my recovery.  During this time, my triggers might change as my brain tries to heal itself. Here are the recommendations specific for my recovery based on my current needs:

  • Avoid triggers as much as possible
  • Relax and keep anxiety low
  • Avoid unnecessary travel
  • No boats
  • No treadmill or elliptical
  • No vestibular physical therapy
  • Do yoga or breathing exercises
  • Sit back in meetings to avoid turning my head frequently to face the speaker(s)
  • Wear sunglasses outside and blue light blocking glasses and a cap in fluorescent lighting
  • Don’t watch moving things if they start making you feel weird or bad (ex. water moving in the wrong direction)
  • Have one alcoholic beverage to relax, but not more than one (two or more can worsen or trigger symptoms the next day)
  • See a vestibular psychologist if possible to assist with things like learning calming techniques and breathing exercises

Hope

I am feeling really hopeful about the future after gaining more understanding about myself and my brain.  I feel more in control now that I have more guidance from a knowledgeable professional. This experience was energizing. It has motivated me to focus on taking care of myself.  I still have some boating to do until I reach land, but I’m more confident now that my ship is headed in the right direction.

Thank You

Thank you to all of my fellow MdDS warriors, family, and friends for your kind words, support, and help throughout this process.  You are the best! I am so grateful for you. Please let me know if you have any questions or want to connect. I’m trying to reduce my tech time for the next few weeks, so I might be slow to respond, but I promise I’ll answer.

The Future

Will I go into remission? Will my triggers change? Will my improvements last? I’ll write another post in a few weeks. In the meantime, I’m planning to do weekly updates on my Instagram @lifewithoutlandlegs. I also have videos of the treatment on my profile and additional photos and daily posts from the trip.

Wishing you wellness and stillness!

Ship for Brains: MdDS Memes!

When you have MdDS…

Every day is like:

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When you realize you also re-live other transportation experiences:

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When you ask your PCP for help managing your symptoms:

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Obviously you google your symptoms because your doctor doesn’t know:

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When you try to say Mal de Debarquement Syndrome:

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When no one has heard of your French syndrome:

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Lights got us like:

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When you decide to buy the special glasses:

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When you got that MdDS fatigue:

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When the brain fog hits:

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When you do too many fun things (or one really fun thing):

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When you try to explain your symptoms to people:

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When random people give you advice:

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When your coworkers try to help, but don’t understand:

When someone asks how you are:

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When you get approved to join the MdDS Facebook group:

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And my personal favorite:

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Hope you enjoyed these! Please share if you have any other good ones or favorite boat jokes!

Six Months at Sea

The Voyage Continues

After about 3 weeks thinking I was headed for land (metaphorically), a snowstorm came (literally). I started getting a migraine more intense than the usual head pressure, with a sharp pain on the right side of my head. The migraine lasted for days. With each day, more and more symptoms reemerged – seeing things rocking or moving, feeling rough waves and a mix of motions, dizziness, gravitational pull when walking, short bursts of tinnitus. I was back at sea every minute of every day.

New symptoms also emerged in the weeks that followed – bursts of dizziness, new patterns of rocking, swirls, and spins. Moving my head or body certain ways creates surprising, disorienting movement perceptions. Just turning onto my side in bed can create a whole rush of rough waves. I keep feeling the floor or bed dropping out from under me – like a plane suddenly descending or an elevator adjusting before coming to a stop.  

After a few weeks I got used to the new sensations, and they have become manageable enough for me to objectively write this post.  However, I won’t sugar-coat it, these past few weeks have been devastating. To go from thinking I’d reached land to being back on the boat constantly, at a very significant point in the recovery process, has been a hard pill to swallow.  I am still stuck on this wild boat ride, out to sea, with no land in sight.

(If you are new to the blog and want to read about my symptoms over time, this is the third post.  Read Just off the boatLandlubber, and Land, Ho? for my previous descriptions.)

Mission: Remission

Something that is important to realize is that there is no cure for Mal de Debarquement Syndrome.  Once you have MdDS, if your symptoms stop you are considered “in remission.” This means that you can’t ever be 100% certain that your symptoms won’t return.  MdDS can start again at anytime. People can be re-triggered by a car ride, airplane, fatigue, running on a treadmill, an elevator ride, looking at moving water, or even spontaneously.  

 

The 6 Month Milestone

For people with MdDS, the best chance of reaching remission is within the first six months.  After 6 months, the chances of spontaneous recovery from MdDS are reduced, making it a significant (and depressing) milestone.

“For now, what we know is that if MdDS symptoms do not resolve within several months, the chances of remission get pretty slim.” – Yoon-He Cha, MD

I know that every person is different. Many people do reach remission after 6 months or even a few years.  There is always hope, even if the odds aren’t great.

 

Missing Stillness

If you don’t have MdDS, it is extremely hard to fathom the feeling of constant motion. When this first started, I couldn’t have imagined myself 6 months later still feeling this way.  I desperately long for true stillness. I want to not be moving and not feel moving.  I want to be able to close my eyes and feel the actual, real ground, under my body.  I want to rest.

“They remain symptomatic when they are still, such as standing or even lying down. In other words, they are never quite able to rest.”  -Yoon He Cha, MD, describing patients with MdDS.

I know this is sad to read.  I’m not looking for sympathy. Please, don’t throw me a pity party! When I started this, I was hoping I could reach remission within 6 months and post all about it. This isn’t the ending I wanted, but I have to be real and share the ebbs and flows.   I set out to write my real, actual experience with Mal de Debarquement Syndrome, and this is it.  

A Better Sailor

As hard as this experience has been, it has made me realize that I am very lucky to have the capabilities that I have.  I’m grateful that I’m able to do most of the things I did before.  Yes, I am still on a boat, but many aspects of my MdDS have improved in these past 6 months. Here is a list (and it is pretty long!):

  • Fatigue: I can function on a normal amount of sleep, compared with sleeping up to 16 hours a day in the beginning.
  • Headaches:  I still get headaches, but usually I can push through and continue doing normal activities.  
  • Brain Fog:  Most of the time, I feel pretty clear-headed.  
  • Sleep: I’m able to sleep through the night with my weighted blanket.  I’ve only had one night that the motion sensations woke me up (and were rough enough to keep me up) since I got the blanket.  
  • Feeling Motion: I always feel in motion, but most of the time I’m able to handle it. I’m not sure if the waves feel calmer or if I’ve just adapted to them. 
  • Visual Motion:  I still see my rocking, swaying, etc, but most days it doesn’t interfere with normal activities. For example, I remember struggling to read my first week back from my trip because the words would rock back and forth in a u shape.  Now, my vision is consistently stable enough to read and do most normal activities.  
  • Maintaining Focus:  At first, I would get really distracted by the motion sensations.  Over time, I have gotten better at ignoring them when I need to.
  • Lights: I am able to better tolerate short exposures to blinking lights or bright lights. I also have a variety of glasses and accommodations that have helped me deal with lights (see my post, Staying Afloat, for more info).
  • Technology Use:  I wouldn’t say I can be totally care-free with screen time, but I can tolerate a “normal” amount of tech time.  For example, I used to get sick watching certain shows or movies because of the motion or camera angles. Now, I can pretty much watch anything with minimal problems. I can scroll without issues most of the time!
  • Fear:  At first, I was scared to do normal things like driving, going to stores, or crossing streets.  Now, even if I feel anxious in those situations, I am able to stay calm and remind myself that my sensations aren’t reality. For some reason, it helps me to think about how no one else can see or feel what I’m seeing or feeling.
  • Resilience:  I’ll be honest, most days I still feel pretty crappy compared to my “old self,” but I am amazed that I have been able to push through it every single day for six whole months! Just doing normal things with MdDS is a huge accomplishment.

I know that I’ll become a more skilled sailor over time.  I feel very strongly that this experience is changing me for the better in the long run. It is my goal that I will look back on this time in my life and feel like there was a purpose to all of this for me.  My new motto: Good things are coming.

I would love to hear from my MdDS crew if anything in this post has resonated with you or if you have any advice for me going forward on this voyage.  Definitely share if you have reached “acceptance island” and how you got there!

To read Dr. Cha’s full article describing MdDS (quoted above), click here.