Symptom Lists for VM and MdDS

“What are your symptoms?”

“Um… where do I even begin?!? I feel like I’m on a boat all the time. I get migraines… and by migraines I mean headaches. Sometimes I get dizzy, like a spinning feeling. I also feel numbness or tingling sometimes. Oh yeah! I used to be really sensitive to light, but that seems better. My ears ring sometimes, too. I know there is more. Hold on, let me think…”

Has this happened to anyone else at the doctor’s office? I remember when I was seeking out a vestibular migraine diagnosis, I started telling my neurologist about having head pain and random spells of spinning. At previous appointments, we had mostly talked about MdDS. He said, “Oh so you don’t feel like you’re on a boat anymore? Sounds like you are getting better.”

I was actually having constant MdDS symptoms. I had just failed to mention them that day because they weren’t my main concern at the appointment. I realized I was having so many symptoms that it was hard for me to remember to mention them all, and it was hard for the neurologist to keep track! That’s when I decided to make a checklist!

I have gone to a few different specialists since then, and I started working with a different neurologist in April. It’s been super helpful to have or share my checklist of symptoms for each appointment. I print out a new copy and check the boxes before each appointment.

Here is why:

  • I don’t forget to mention any symptoms or triggers
  • I can look back over time (usually months) and see which symptoms have stopped, improved, or started up again
  • I can give a copy to the doctor to keep in their files
  • I can track benefits of any treatments I’m trying from appointment to appointment

I’ve been feeling really good lately, so I finally got around to sprucing up my symptom checklists into shareable print-ables!

Here are the links:

Download the Vestibular Migraine Symptom and Trigger List

Download the Mal de Debarquement Syndrome Symptom and Trigger List

If you use them, let me know how it goes!

I’m working on some exciting updates about my personal journey to share soon. 🙂

Wishing you wellness and stillness!

Unfixed: A Documentary About MdDS and Other Chronic Conditions

I am so excited about this documentary! It was created by Kimberly Warner, a filmmaker with Mal de Debarquement Syndrome. Not only does it feature her story, but also the stories of others with MdDS and Vestibular Migraine!

The description and visuals at the beginning are dead on, and worth showing to friends and family to help them understand our condition!

I love that the documentary not only shines a light on the struggles of people with chronic conditions and disabilities, but also raises awareness about MdDS.

Unfixed also has a YouTube Channel, featuring honest and inspiring content about living life without a cure. It highlights the resilience required to live “unfixed” and celebrates the diversity of the human condition.

Check it out to support our vestibular and chronic community!

Two Years Without Land Legs

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!

A Break in the Waves: The Cefaly

After trying the Timolol Maleate eye drops for 6 weeks, I was feeling a lot better, but I was still getting migraines (in addition to the sensation of constant rocking/bobbing/swaying, of course).  For me, “migraines” mean head pain, brain fog, vertigo, visual auras, bursts of tinnitus, and numbness. I was still experiencing constant light sensitivity, and the increased time on technology required to work from home was challenging.  

My doctor prescribed the Cefaly device.  According to the website, it is an external trigeminal nerve stimulation device.  It sends tiny electrical impulses to modify pain transmission and processing in the trigeminal nerve, which plays a large role in migraines and sensory sensitivities.

There are two ways to use it:

  1. Preventative Setting: Use 20 minutes daily to prevent migraine attacks and symptoms.
  2. Acute Setting: Use 60 minutes to stop or reduce migraines during an attack.

To use the Cefaly, you place an electrode on your forehead, which the device sticks to (it’s a magnet).  The Cefaly vibrates, starting almost imperceptibly, then increasing the strength of the vibrations to calm the trigeminal nerve.

For me, the hope was that the device would not only prevent or stop migraine attacks, but that it would also reduce light sensitivity and the constant motions of Mal de Debarquement Syndrome.

Following my first use of the Cefaly, I felt a slight headache, but also a rush of calm and ease.  I was excited to keep using it.  

Later that day, I started to feel vibrations when I wasn’t wearing the Cefaly.  I wasn’t surprised because this kind of thing had happened to me before. I believe it’s a symptom of MdDS (but if you have VM and this happens to you, too, let me know!).   As you know, I relive the motions of boat rides and other transportation, but I also have to avoid things like electric toothbrushes or rolling chairs, because if I use them, I tend to relive those motions later in the day throughout my body (e.g. spinning toothbrush = feeling spinning motions, rolling chair = feeling like I’m rolling when I’m not moving).

The vibrations didn’t really bother me at first.  They seemed to block out the rocking/bobbing/swaying, so vibrating instead felt like an improvement!  After a week though, it was starting to drive me crazy.  I felt like my migraine symptoms were improving, but I was going about my day surprised by vibrations in my legs, arms, face, and feet, lasting minutes to hours.  Sometimes my vision looked like it was vibrating.  

Ready to give up on it, I messaged my doctor.  He said to keep the Cefaly on a lower setting (by pressing the button on the front) to stop it from increasing the vibrations.  This would hopefully keep the vibrations low enough to help, but not strong enough to relive them. I was skeptical, but I figured it was worth a shot.  

It totally was.  The vibrations quickly became tolerable and less frequent. Over the next few weeks, I started to feel really good.  I didn’t have any migraines.  I felt calmer.  I noticed that I was working on my computer without light sensitivity glasses.  Before the Cefaly, my eyes felt strained just looking at a screen without them, but now I wasn’t even noticing if I had them on or not.  

One night, as I lay in bed, I could feel the bed beneath my body… and nothing else.  No movement.  I figured it was just a coincidence, and I fell asleep.  

A few nights later, the same thing happened.  

One day, I felt a rush of movement all of a sudden, rocking front to back.  The motion wasn’t uncommon for me, but the fact that I hadn’t been noticing any motion before this sensation was the remarkable part!  Was I actually having periods of stillness?

I can’t say with 100% certainty that I am.  I’ll be honest, I’ve been in constant motion so long that I’m not totally sure what stillness feels like.  I am sure that compared to what I’ve been feeling for two years, this is a significant improvement. 

The dreaded week came where I get my monthly migraine(s).  Usually by 4:00 on the first day of my period, I’m pretty much done for. Sometimes the attacks themselves can last up to 3 days.  Usually I feel “off” for the next 5-7 days with brain fog, head pain, and increased dizziness.  

As always, around 4:00, I could feel a migraine coming on.  I put the Cefaly on the acute setting.  When I took it off, I felt normal!  I went on with my evening without restrictions!  I started to get head pain again around 9:00, put on the Cefaly again, and all symptoms disappeared.  The rest of the week, I felt good!  No migraines.  No increased dizziness.  No auras.  No brain fog.

A few other days I felt a migraine coming on, I used the Cefaly for 20-60 minutes (depending on how much time I had). It has worked every time. It’s not perfect, but I’m always able to function normally without head pain, even if I have other symptoms.

I’ve had a few more nights and early mornings feeling completely stable.  I haven’t had a full migraine attack since I started using the Cefaly.  My computer and phone had been on “night mode” orange for two years, but last week I finally changed the settings back to normal with no problems!  I stopped reliving the Cefaly vibrations all the time… now it’s more like an occasional, short-lived sensation.  I continue to feel rocking/bobbing/swaying motions, but I would say I feel anywhere from a 30-60% improvement on average.  

I have no affiliation or connection to the Cefaly company. I don’t get any money for posting this. I am simply sharing because it has helped me so much!  I honestly have hope that if things keep going this way I could feel normal again.  I’m so grateful to have something else in my toolbox to help me cope with my symptoms.  

There are a few other changes in my lifestyle that I want to mention, because I think often it’s a mix of factors that allow the body to heal.  I have been taking supplements since March (Co-Enzyme Q-10, Magnesium, Vitamin D, Vitamin B2).  I have been taking probiotics and experimenting with dietary modifications since December. Like most people, I have spent most of my time at home or outside since March, which I think is relevant because it has helped me limit my exposure to some triggers (although I’m spending more time on screens).  I quit my stressful full-time job to start my own business, which isn’t necessarily less stressful, but I absolutely love my work now and feel more positive about the future. 

Any questions?  Ask me anything in the comments!

If you are looking for any support throughout your healing process, I would love to meet with you!  I work with my friend Kelly, an occupational therapist, and we provide solutions and strategies to help people make changes to their daily lives, reach their goals, and start living better days!  To find out more or to schedule, visit our website: https://www.solutionsforabetterday.com/forindividuals or message me!

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.

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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!