Last week and this week, the docu-series Life Rebalanced Chronicles tackled two major topics!
When my symptoms were high, I had a lot of guilt about it. I felt bad for my loved ones. I didn’t want to be stuck in what felt like a miserable story. I felt like a burden… I couldn’t drive, I canceled plans, I was often in a bad mood, and I was too exhausted to complete small tasks. I wanted to give everyone a happy ending, but I couldn’t.
I began to question who I was as I embarked on this new and terrifying voyage. I didn’t feel like my old self, physically or mentally. It’s been a process (and still is) figuring out “life after MdDS.” I spent the first year trying to prove to myself I could do the things I used to do. I spent the second year trying to make big changes – new business, new baby, new house. I’m still not sure what my third year will bring!
Have you watched Life Rebalanced Chronicles yet? If you haven’t, this is an episode you don’t want to miss! It’s heartbreaking and uplifting; I couldn’t watch it without crying!
When I got my diagnosis, it broke my spirit. I was questioning so many things in my life. I only had so many hours that I felt good, was I making the best use of my limited energy? Why was this happening to me? What would this suffering mean for my future? How will I live like this? Finding the answers to these questions made some of my worst days became spiritual turning points.
VeDA gives an excellent description of this powerful episode here:
In the third episode of the Life Rebalanced Chronicles – Spirit Rebalanced – we look inward, as we explore the spiritual practices that lift us out of the darkness when we are struggling with a devastating illness. Living with a vestibular disorder challenges you in many ways. How do we summon the inner strength to face these challenges? Often, people struggling with chronic illness go through a grief process similar to that described by Elizabeth Kübler-Ross – denial, anger, bargaining, depression, and finally acceptance. Many find that having a spiritual practice helps them deal with this grief and contributes to their overall well-being. Gratitude, forgiveness (of oneself and others), prayer and meditation are just a few examples of practices that support our inner wellness. Other examples include humor, self-compassion, solitude, journaling, art/creative endeavors, service to others, and spending time in nature.
The episode premieres on YouTube today at 12:00 CT – check it out at the link below.
I’m so excited to share with all of you a project I’ve been working on that’s close to my heart, Life Rebalanced Chronicles!
The Life Rebalanced Chronicles docu-series features nine vestibular warriors talking candidly about how their lives have been affected by these invisible illnesses, including me! I’ll be sharing my experiences living with MdDS and vestibular migraine.
The first episode of the Life Rebalanced Chronicles docu-series is called Body Rebalanced. In this episode, we explore how having a vestibular disorder changes our relationship to our body.
For me, this included fatigue, rocking, bobbing, swaying, pushes/pulls, weird sensations when walking, visual disturbance, light sensitivity, head pain, dizziness, nausea, and fear.
We also discuss some things that have helped! Migraine or blue-blocking glasses, a weighted blanket, walking in nature, massages, and sleep are some of my favorite tools.
I hope you will join me for the YouTube premiere tomorrow! You can watch it tomorrow (Tuesday, August 17, 2021) at 11am PDT/1pm CDT/2pm EDT/7pm GMT using this link!
Showering with dizziness and vertigo can be scary and difficult! Many people with vestibular migraine and MdDS are overly dependent on their visual system to help them balance, and they feel lost in space (and often lose balance) when they close their eyes! The downward moving water, enclosed space, and head movements required to shower can trigger symptoms for many people. Here are some of our favorite strategies for feeling more stable in the shower.
Sit on the floor, a bench, shower stool, or plastic chair with grips.
Use a clear curtain to make it feel less enclosed.
Use a hand-held showerhead. it is helpful because you can control the flow of water, keeping it out of your eyes, sightlines, and allowing you to move the shower head instead of your head.
Wash your hair from behind so you can keep your eyes open for stability.
Press a body part against shower wall or use a grab bar. This will give your body some much-needed information, called proprioceptive input, to know that you aren’t moving. It will help your brain determine where you are in space, making you feel calmer and more stable.
Try to keep your eyes forward and head still. Keep your soaps and shower accessories at eye-level, so you don’t have to bend down or look up to reach them.
Use music, scents, and calming breaths to make it a more pleasant experience. Many people with VM and MdDS start to develop “shower-anxiety” because they know it triggers their symptoms. Creating calm or positive associations with showering (in addition to using the other tips above) can help you avoid a spike in symptoms due to shower-related stress or anxiety.
Motion sickness can be a symptom trigger. Many people with vestibular migraine and mal de debarquement syndrome are prone to experiencing motion sickness. Try these tips to make traveling a little easier.
Look at the horizon.
Front seats are best. If you are in a plane, sit at or in front of the wings, where the flight is less turbulent. In a car, sit in the front seat.
Try ginger chews, tablets, or tea.
Smell peppermint oil or have it as a gum or tea.
Push the acupressure point 2 finger-widths below the writs, or use special wrist bands.
Stay hydrated, eat a light meal, and avoid alcohol and caffeine. Don’t travel with a hangover!
Keep a comfortable temperature by wearing layers or using a fan or A/C.
Many people with migraine, vestibular migraine, and mal de debarquement syndrome struggle with the lights and motion of screen time. Are you struggling to work, relax, pay bills, stay connected, or shop online because of your symptoms? Read on for some tips to help you manage your tech triggers.
Try FL-41 or blue-blocking glasses. The blue light from screens can trigger migraine or vestibular symptoms. These glasses filter out harmful wavelengths of light, helping to stave of symptoms and increase screen-light tolerance.
Take breaks. Start with the 20-20-20 rule. Every 20 minutes, look away from the screen at something 20 feet away for 20 seconds. This will provide a break for your eyes and brain.
Change the settings on your devices to reduce brightness and blue light. In display settings, turn down the brightness. Most devices have “Night Mode,” “Night Shift,” or “Night Light” accessibility options to reduce blue light at night. You can alter the settings to have these on during the day as well. Flux is a free program that allows you to control the blue light if your device doesn’t have these features built-in.
Change the settings on your devices to reduce motion. In accessibility settings, turn on reduce motion to help if you have difficulty with scrolling and switching screens.
Keep your distance from screens. Sit at least 20 inches from a computer screen. Sit at least 8 feet from a TV screen.
Use good ergonomics. Screens should be at eye level. Sit in a supportive chair, without wheels, which can increase vertigo and make it difficult to keep a consistent distance and position.
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!