Stores can be minefields of symptom triggers! Here are a few tips for shopping with MdDS and Vestibular Migraine.
To cope with bright lighting, try blue-blocking glasses, migraine or FL-41 glasses, sunglasses, or wearing a hat with a brim.
Avoid shopping at peak times. Go when the store isn’t busy. When there is less people, there is less visual motion. It will also be easier to navigate the store if you are struggling with depth perception – there won’t be lots of people or carts to avoid or pass through.
Shop at smaller, local stores or boutiques. Often, the lighting and layout is more sensory-friendly. There is typically less visual stimuli without the giant displays and shelves stocked to the brim. This is also a good place to start if you are just getting back into shopping in person.
Use a cart if it makes you feel more stable. If you struggle with depth perception, stores with smaller carts of half-carts can be very helpful.
Bring a buddy. If you need to leave the store, take a break in the car, or you need walking support, it will be great to have someone with you. Being with a loved one can also make the task more fun and distract you from your symptoms.
Bring rescue medications. If you are triggered while in the store, or you need to shop despite symptoms are high, ask your doctor about using rescue or preventative medication before or after your shopping trip.
If you get triggered or feel your symptoms increasing, leave the store. Sometimes it can take a while to get back to baseline after a trigger, and it isn’t worth “sticking it out” if it’s going to ruin your week.
Looking for help with the mental and physical aspects of dealing with triggering environments or situations? We would love to meet with you and create a personalized action plan! Learn more about coaching services for vestibular migraine and mal de debarquement syndrome.
As I write this, I’ve nearly reached the end of the third trimester. I am finally seeing the light at the end of the tunnel, and I can’t wait to meet my little girl! I feel incredibly blessed and grateful for her.
The love and excitement from family and friends has been so uplifting. It’s a lot of fun feeling her limbs moving and trying to guess what she’s doing in there! “Nesting” is one of my favorite things. I love organizing and arranging her room and, most of all, shopping for baby clothes.
I’m not trying to be a complainer by listing my ailments; my goal here is to give you the low-down on all the Mal de Debarquement Syndrome (MdDS) and vestibular migraine (VM) symptoms and changes during this trimester (as promised). I realize I am so lucky to have this miracle happening in my body, and I am so grateful for this experience, even though it definitely has its challenges. If you are reading this and considering pregnancy soon, know that your experience could be much, much better than mine! We are all so different.
Discomfort and Sleep Changes
If I had to describe the third trimester in one word, it would be uncomfortable. Every few days some new, uncomfortable (although normal and common) pregnancy symptom seems to arise (numbness, swelling, random pain, sciatica, pelvic pain, aches, heart palpitations, baby’s movements, baby’s position, cramping, nerves, uncertainty, etc.), making it difficult to stay asleep.
I think the lack of a consistent sleep schedule and not getting enough sleep has made me more prone to migraines, dizziness, and vertigo (along with all the other factors of pregnancy that cause headaches and vestibular symptoms!).
MdDS and VM Symptoms
This trimester was definitely more difficult than the second trimester, but it’s been manageable.
At week 33, my baby flipped positions in my belly, and as a result I developed a strong bob, up and down. It would get worse or better depending on triggers, but my vestibular symptoms overall from that point on seemed higher than they had been in a long time.
As my belly has grown, my balance has decreased. Being front-heavy throws seems to increase the rocking/bobbing/swaying. I feel stronger false motion, and I see it more often now, too.
My walk has become a waddle, which I don’t think helps the vestibular situation! Going for a walk became an MdDS trigger at the start of this trimester. However, after the weather got better and I spent a couple of weeks of walking daily with a big belly, my brain seemed to adjust to the walks without an increase in symptoms.
My doctor said that the fluid changes (in mucous membranes, blood volume, etc.) in pregnancy were likely increasing the vestibular symptoms overall, and that it’s common to struggle with equilibrium. Clumsiness is typical in pregnancy, but I definitely think what I am experiencing is beyond the norm. It is almost comical how much I am tripping, dropping things, and losing my balance!
I learned pretty quickly to take it slow on stairs, hold on to things, watch where I am walking, avoid multitasking (like walking while looking at my phone) and avoid carrying anything that throws off my equilibrium more or blocks my sight-lines of my feet and the surfaces I’m walking on.
Despite all of that, I feel like I’m managing pretty well. The pregnancy symptoms I’ve had have been more challenging for me than the increase in VM/MdDS symptoms. It’s likely because I’ve been dealing with this for almost 3 years now, and although I have some rough hours, I know how to cope. I think the novelty of the pregnancy pains and discomforts has been part of what makes them more challenging for me.
The random visual spots/auras that were constant for part of last trimester show up only occasionally (I swear they are triggered by the baby’s position or the misalignment of my pelvis due to joint dysfunction). I see some new squiggles in the morning sometimes and some moving visual auras when looking at bright, white spaces or moving my head a certain way, but they are fleeting. I had two migraines with vertigo and aura this past week, but both improved significantly with the Cefaly and a long nap.
One of the tricky things about being pregnant with migraine has been the similarities between the symptoms of preeclampsia and the symptoms of migraine with aura. So far, my blood pressure has been normal at most doctor visits, but it is definitely something I’ve had to call and talk to my doctor or nurse about multiple times.
On the difficult days, I often remind myself that I knew this would be hard, but I had decided to do it anyway! It’s a challenge that I signed up for, and that I can handle. Not to mention the huge reward at the end – my little girl, and so many fun and miraculous moments along the way! I feel really lucky that my baby is healthy and all indications are that things are going smoothly.
Anything I can do to keep my spirits up and stay distracted is helpful (including writing this post). Luckily, it’s been pretty easy to keep busy working and preparing for the baby’s arrival.
I am continuing to take pregnancy-safe migraine supplements, use the Cefaly (sometimes for 2 hours a day), and use Timolol Maleate eye drops to help reduce visual motion and migraine. I’ve needed to nap strategically, and I’ve even used a little caffeine to manage some head pain and brain fog (but only a little – too much makes the vertigo worse).
I’ve had to limit my exposure to triggers more than last trimester to avoid making symptoms worse. I have been more sensitive to technology, light, and scrolling again. I also think I’m more sensitive to chocolate, but I have to admit it’s been extra hard to avoid!
Spending time in nature, social connection (as much as possible in these weird times!) and recognizing and honoring when I need to rest (without feeling guilty about it) has been key.
Planning for the Future
I’ve had lots of “adventures” since I became more comfortable living in constant motion, but this might be the biggest one yet! I’m nervous about managing symptoms during labor and birth… although I tend to get through the tough stuff pretty well and later struggle with “let down” migraines and vertigo.
My plan for symptom management during labor and delivery is to take a low dose of prednisone as a last resort if I’m experiencing a lot of vertigo (per my neurologist and OBGYN). I’m really hoping to avoid the steroid, though, and get by with:
Timolol Maleate eyedrops
Light sensitivity glasses (I’ll bring both FL-41 and blue-blocking glasses)
After the birth, I’m nervous about the prolonged sleep deprivation, but I am lucky enough to have a great support system. My doctors recommended using either prednisone or lorazepam as needed for symptom management, but I’m hopeful that I can continue to cope with the tools I’ve been using.
This whole situation feels really surreal… It’s hard to believe that any time now she will finally be here. I am so excited and happy! I know despite any challenges there will be so much joy.
I’m planning to take a hiatus from social media for a while after the baby is born, but I’ll be back to give you the details of how it’s going when I’m ready. In the meantime, wishing you all wellness and stillness!
As the first trimester faded away, I felt like myself again! All of the typical pregnancy things I had heard about second trimester were coming true. I was becoming more energetic and less fatigued. The awful motion sickness and morning sickness gradually disappeared. I was in a better mood! It was easier to be productive. It was a breath of fresh air.
I started to experience more of the fun aspects of being pregnant – seeing my belly grow, feeling the baby move, having a 20 week ultrasound, and learning that she is a girl! I will focus mostly on MdDS and VM symptoms in this posts because I know that’s what I was most curious about when deciding if I was ready to have kids, but there is so much more to pregnancy and daily life than that! I’ve felt so much joy and gratitude throughout this miraculous process so far!
Mal de Debarquement Syndrome (MdDS) Symptoms
During the second trimester, it became easier for me to separate out what I perceive as MdDS symptoms and what I perceive as vestibular migraine symptoms. Luckily, the constant MdDS rocking, bobbing, and swaying sensations, which for me had been pretty distinct and linear, started to fade!
I received quite a few messages from women who experienced pregnancy after having MdDS first, all saying they felt quite good during their pregnancy! I am excited to report that this has been my experience on the MdDS side of things as well!
I’ve had short sections of time where I think the rocking/bobbing/swaying might be gone, but when I stare and the wall and get really still, they seem to be lurking there. When I tune into it, it feels more like a floating or slight instability instead of distinct “boat motions.” Most days, I usually forget about it. The only exceptions to this are when it’s raining or snowing, if I smell chemicals, if I’m stressed, or if I have even a little bit of caffeine. It’s much easier to identify specific triggers with a low baseline!
Overall, my MdDS symptoms improved in second trimester! Definitely another piece of anecdotal evidence for a hormonal component! I’m excited to share this aspect of my experience with the other women in our “crew” looking to get pregnant. There is hope, ladies!
Vestibular Migraine Symptoms
I had a really good stretch at the beginning of the second trimester. Some headaches here or there, some of those weird floor drops at the grocery store, but overall I was feeling really good!
Around week 17, something really weird started to happen. Every time I peed, I would see symmetrical flashes in my peripheral vision. It freaked me out at first, but I eventually I figured it was just a really bizarre migraine symptom. It faded away over the coming weeks and eventually stopped. It’s still a mystery!
Around that same time, I started to get brief vestibular migraine episodes, only every couple of weeks. All of a sudden, I’d move my head and feel a burst of spinning vertigo. I’d be sitting in a chair, feeling fine, and then suddenly I’d have to grip the chair, feeling like it was tipping over. I would immediately use the Cefaly device or Timolol drops, so these episodes passed quickly, but would leave me with some mild residual symptoms for the day (difficulty using computers, more light sensitive, head pain, difficulty scrolling, visual auras, dizziness, vertigo with head movements).
Aside from these episodes, most days I felt very good with low or manageable symptoms.
I went to a warehouse-style tile shop one day, and the big, overhead LED lights were flashing. I quickly looked around for what I needed and got out of the store in less than 10 minutes, but it was too late! My head started to hurt and feel swollen, and my face started to tingle. I was seeing and feeling false motion – circular, like a hula hoop. I used my Timolol drops immediately, plus the Cefaly when I got home. It didn’t get any worse, and improved with two hours of Cefaly use, but it took me a week or so to get back to baseline. Moral of the story: being pregnant did not make me immune to migraine triggers.
Also around week 17, I began to notice black spots in my vision. It started out happening only during exercise, whenever I was straining during a lower-body workout (lifting weights, wall sits, squats). Eventually, I realized I would get a big burst of them whenever I plopped down on our entryway bench to put my shoes on.
It slowly started to happen more frequently, and the spots seemed to change – sometimes black, sometimes clear, sometimes rainbow-edged.
At week 24, the spots became constant. All day long they would flash in and out. They we accompanied by a mild, constant, dull headache. Nothing I tried made it better.
My new motherly instincts must have kicked in, because I became really worried about my baby. My initial fear was an issue with blood flow or blood pressure that would affect her development. I called the doctor right away. My blood pressure and the baby’s heart rate were fine; the doctors were more concerned about my vision.
I met with my OBGYN, multiple ophthalmologists, and my neurologist. I had lots and lots of tests done. Honestly, the unknowns were stressful and scary, but, in the end, every single test came back NORMAL. After reviewing the testing, all of the doctors seemed to agree that these spots were most likely due to migraine. Probably a new version, brought on by pregnancy. I always seem to fear the worst, and in the end, isn’t it always “just a migraine?”
(Spots Update: I’m in my third trimester as I write this, and the spots finally seem to be improving after a month of being constant. I think there is some correlation between the baby’s movements and when I see them, but they are intermittent now, which is a big relief!)
The Good Stuff
I am so happy and excited to have our baby in my life! The best part of this trimester has been feeling her movements and kicks growing more frequent and stronger. I get excited every time I catch my big belly in the mirror, knowing she’s in there, growing and developing!
The ultrasounds are incredible. It’s nothing short of a miracle to me that my body, which for so long seemed “broken,” is capable of successfully creating another person. There is nothing quite like seeing her tiny body parts. I often look at the ultrasound photos and then stare at my husband, trying to guess what she will look like!
It’s funny for someone who has worked so hard to get rid of internal movement, I love feeling her move! It’s a whole different thing knowing that the movements are real, and that there’s another person making them!
I feel really blessed and lucky to be experiencing this, despite any challenges. I know a lot of you reading these posts are considering having a baby, and honestly, the good stuff makes all the challenges worth it.
I share all of the “bad” symptoms because I want to give you a realistic picture of my experience, but overall I spent the majority of days this trimester feeling good, less “boaty” and more stable. The hard days don’t overshadow the good ones!
If you are new to MdDS and/or migraine or are a more experienced “sailor” looking for support and a fresh perspective, I’d love to work with you! Learn more about meeting with me to create a personalized action plan for your dizzy daily life here!
My husband and I spent a few months of 2020 looking for a new house. Like many millenials post-COVID, we ran out of reasons to live in the city (no longer needed to commute to work, needed two home offices, many businesses were closed or had limited hours, no longer spending our time in restaurants and bars), and gained one big reason to live in the suburbs (our baby on-the-way)!
When we started searching, my MdDS symptoms were higher than they are currently, and I was more prone to vestibular migraine attacks and symptoms. Ever since my onset trip, my brain had always had an “adjustment period” to new places, which usually created a few minutes of elevated rocking, bobbing, or swaying until I got comfortable with my surroundings. Overall, I felt was managing pretty well, though. Oddly enough, I didn’t anticipate house hunting being a challenge…
Our first day out looking at houses, I realized quickly that it was going to be harder than I thought. We looked at a place with an enclosed staircase, and my “boat feeling” immediately worsened. I decided then that if I couldn’t see an open staircase in the house-preview pictures, we weren’t going to look at the house.
Early in our search, we found a really cool house that had almost everything we were looking for… until we reached the basement. It had low ceilings, uneven floors, no windows, and those awful cylinder lights that tend to blink as they start to go out. I could feel a migraine coming on… my MdDS immediately ramped up and my head started to feel swollen.
I realized then that I needed to carry my rescue medication (Timolol Maleate eye drops) with me all the time. I put a dropper in my purse, and it has come in handy so many times since (house hunting and otherwise).
Besides the migraine, the other part that really sucked about this situation was that we loved the other aspects of the house! We agreed at the time that we couldn’t live somewhere that I couldn’t use the basement. Even if we changed the lights, the enclosed space and uneven-ness of the floors would probably always be a trigger.
It’s always hard when these types of situations come up. I’m feeling like I have things under control, that I’m doing really well… then something comes along to remind me of my limitations. Those automatic negative thoughts, like, “If I weren’t sick, we could have bought this house,” or “My husband can’t get the house he wants because of my illness,” are difficult to ignore.
When I brought myself back to reality, I realized I was just really lucky to be looking for a house in the first place. Plus, the right house for us was going to be something that we both loved and felt good in.
It took a few months of searching, but we eventually found a house with everything we both needed. For me, that was lots of natural light, an above-grade basement, no crazy patterns on tile or flooring, a glass-door shower, no slanted or low ceilings, and rooms with an open feeling.
As I searched, I made a list of triggers. Hopefully they will help you if you are house or apartment hunting this year! It helped me to look at the photos online beforehand and eliminate any houses with obvious triggers. Have a loved-one or real-estate agent do it for you if you are struggling with technology. Pass on this list to them!
House or Apartment Hunting Triggers:
slanted or uneven ceilings
busy tile, carpeting, and flooring patterns (if you aren’t planning to renovate)
make sure light fixtures can be changed or updated if LED, fluorescent, or exposed bulbs are present
make sure there is enough natural light to support your circadian rhythms
avoid enclosed spaces, like narrow stairwells or tiny powder rooms
avoid buildings that require elevator use if this is a trigger
What would you add? Tell me in the comments!
I’ve been working on a more tip-focused blog with my business partner, Kelly, for people with Mal de Debarquement Syndrome, Vestibular Migraine, and/or Migraine. We have a few posts with strategies for various daily challenges, and we will be adding more in the future. These are especially great for those who are new to the dizzy life! Check it out here: https://www.solutionsforabetterday.com/migraines-and-dizziness-blog
If you missed my last post, I’m pregnant with my first baby! My husband and I are so grateful and excited for our little girl!
I was dying to know and read anything I could about what pregnancy would be like with mal de debarquement syndrome (MdDS) and/or vestibular migraine (VM), so I’m sharing with you all the things I wanted to know.
Am I in Remission? Not Yet.
I had a feeling that I was pregnant before even taking a test because I didn’t wake up with my usual monthly spike in MdDS symptoms. I was so excited at the possibility that pregnancy would finally “stop the rock,” but so far I’m still without land legs. I have hope for more stillness as the weeks go on, though! I’ve heard wonderful tales of women who had a baby and never had symptoms again!
Baseline Before Baby
My symptoms were the lowest they had ever been when I found out I was pregnant, both the rocking/bobbing/swaying of MdDS and the vertigo, head pain, and auras of vestibular migraine. I was on a pregnancy-safe treatment plan of daily Timolol Maleate eyedrops, Cefaly use, and supplements. Being only at home or outside most of the time, it’s rare that I’m exposed to triggers I can’t manage, aside from the weather. Overall, I was feeling pretty in-control, with symptoms usually around a 1-2 (out of 10).
My light sensitivity had disappeared for normal daily activities (although flashing lights or strobes must be avoided). I was able to use the Cefaly device at the first sign of a migraine (head pain or increase in vertigo) to stop it from escalating or make it disappear. The Timolol Maleate drops I was using had calmed down my visual vertigo and seemed to lower my overall baseline. (For more info on my treatments, check out Two Years Without Land Legs). Luckily, I’ve been able to continue these treatments while pregnant.
Motion Sickness and “Morning” Sickness
The hallmark of my first trimester was “morning sickness,” which lasted all day and night. The doctor called it “nausea and vomiting,” but it felt more like “always ready to throw up” and “unable to avoid throwing up.” I had nausea (like a seasick feeling) almost constantly my first year of MdDS/VM, but this was on a whole other level. This is pretty common with pregnancy in general, but I do think having MdDS/VM likely made it worse.
I read that women who are prone to motion sickness are more likely to experience morning sickness. Around week 7 or 8, I started getting motion sick riding in the car, followed by an increase in MdDS symptoms and nausea/vomiting after getting out of the car. Ginger (in the form of ginger chews), eating constantly, drinking juice, and Sea Bands seemed to the help in some situations.
Vestibular Migraine and Vomiting
On literally the worst day of the first trimester, I was throwing up constantly, unable to even keep down small sips of water. After a few hours of this, I had a pretty bad headache, so I put on my Cefaly for an hour. Oddly enough, my nausea started to improve. I was able to keep down water, and slowly start eating small bits of food. I don’t have a solid theory as to why the Cefaly would help stop vomiting, but it does make me think there is a migraine and morning sickness connection.
Dizziness and Vertigo
Throughout the first trimester I had temporary surges of dizziness and vertigo, but I think because I’ve managed it in the past, it did not bother me as much as the morning sickness. Before I was pregnant, I had completely stopped having random spins, elevator drops, or other sudden vertigo experiences. After I found out I was pregnant, it started again intermittently. It usually happens most at the grocery store or when it’s raining.
Rocking, Bobbing, and Swaying
The good thing is, that despite the uptick in symptoms after car rides or vomiting, my rocking/bobbing/swaying baseline remained at a 1-2. I have had some stretches during the day where my MdDS-type motion sensations are very low, hard-to-detect, or barely noticeable! It’s hard to say if I’ve reached complete stillness or not… I am not quite sure what that feels like anymore! Weather was the only trigger this trimester that really increased my symptoms for more than a short time.
With hormones running wild and so many body changes happening, I definitely felt a lot moodier than normal. I was exhausted all day, every day. I’ll be honest, it felt nearly impossible stay positive when I was feeling so terrible, tired, and disgusted all the time. I felt guilty a lot of days about how little I was able to accomplish. It helped me to mentally “surrender” to what I was experiencing – to just focus on “being” (not doing) and getting through it. I felt worse on the days I was putting a lot of pressure on myself to get things done. Meditations on the Expectful app were helpful, as was using a daily gratitude journal.
It Gets Easier
Many of the symptoms I experienced are common in pregnancy even without MdDS or VM, so I really don’t want anyone to get discouraged reading this! Honestly, the first trimester was hard, and at the time it felt very long (and like it would never end). But, as I entered the second trimester, things shifted and I started to feel much better! It was a very difficult stretch, but worth it.
The way that so many pregnant women experience similar symptoms week-to-week is fascinating to me, and it reminded me of the way I felt when I realized how many people with MdDS and VM experience similar symptoms. We are all connected in our human journeys. If others before us have done it, we can too!
On the second anniversary of losing my land legs, my life changed forever again. This time for the better. I found out…. I’m pregnant with my first baby! My husband Ian and I are so excited and grateful. It seems poetic somehow that these events happened on the same day, exactly two years apart.
I planned on having kids earlier, but when my “sea voyage” began, it seemed impossible. The waves I felt were often so strong that I didn’t feel stable enough to hold a baby while standing. Even as things got better, I was terrified that becoming pregnant would make my symptoms worse. Until this year, I didn’t have a doctor who understood my condition enough to help me through pregnancy, so facing it without a treatment plan was scary.
I had wanted to have kids my whole life, but I had never pictured myself being a mom with a chronic illness. I started working with a therapist to help me deal with my fears surrounding symptoms, pregnancy, and motherhood.
The turning point for me mentally came during one of those horrible, scary vertigo days that seem to come out of nowhere. I was reading before bed one night, and the words in front of me began to sway. If you close one eye, open it, then close the other eye and open it, really quickly over and over again, that was what my vision looked like with both eyes open.
I woke up the next day with the same problem. None of my usual strategies seemed to help at all. It was scary, hard to function, and really frustrating. I don’t know what triggered it.
The visual issue became intermittent and faded after a day, but it made me realize that pregnant or not, things can and probably will get worse, anytime, without a trigger, and without warning. I realized it was time to move on with my life, and not let the fear of potential future suffering hold me back from starting a family.
I tried to find out as much as I could about pregnancy, mal de debarquement syndrome (MdDS), and vestibular migraine. Here are some of the interesting facts I discovered:
Approximately 80% of women with MdDS feel better while pregnant (trimester not specified)
50-80% of women with migraines experience a reduction in attacks while pregnant
About 63% of all women experience dizziness while pregnant, and around 35% of those women experience vertigo
Here are some anecdotes I was told by doctors and dizziness professionals:
Many women with vestibular migraine experience an increase in dizziness and vertigo during the first trimester, but feel better in the second and third trimesters.
Some women with MdDS start to feel better as soon as they get pregnant, even to the point where all symptoms stop completely! This sounded too good to be true, but after doing a search on a few different MdDS Facebook groups, I found a few posts from women who experienced this!
Many women with migraine disorders feel worse in the first trimester as hormones shift, then feel better starting in the second trimester when hormones stabilize.
Pregnancy itself can trigger the onset of both vestibular migraines and MdDS (spontaneous or motion-triggered). My doctor recommended avoiding boats or other types of transportation that could trigger symptoms.
Women prone to motion sickness are often prone to morning sickness.
I was so excited at the idea that pregnancy could stop the MdDS for a while, but the outlook for vestibular migraine symptoms didn’t seem as good! In my next post, I’ll tell you all about my first trimester.
“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!
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, 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:
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!
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:
Preventative Setting: Use 20 minutes daily to prevent migraine attacks and symptoms.
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!