Birth and Postpartum Without Land Legs

It took me seven months to write and post this!  It’s so hard to describe the highs and lows of new parenthood… the extraordinary love, the extreme joy, the all-consuming exhaustion, the snuggles, the diapers, the breastfeeding, the recovery, the vertigo, the worries, the awe, the brain fog, the gratitude… It has been a whirlwind.  

Symptom-wise, it’s been much more challenging than I had anticipated.  I’ll give you the relevant bits related to MdDS and VM.

Birth

  • In the days leading up to her birth, I had a daily migraine with vertigo or visual spots. These thankfully stopped after I gave birth.
  • I had an epidural, and once it kicked in… I DIDN’T FEEL ANY FALSE MOTION. Isn’t that wild? It was pretty amazing! 
  • The false motion sensations returned after the epidural was out. Whomp whomp.
  • I worried a lot during pregnancy that I would have really high symptoms during the birth, but it turned out I didn’t have any symptoms once I got the epidural! All that worry and prep wasn’t necessary.

The First Few Days After Birth 

  • In the hospital, my symptoms pretty much stayed at baseline. I wore blue blocking glasses the whole time and used the Cefaly multiple times per day.
  • When I got home from the hospital, I had horrible edema, and the sleep deprivation of the past few days seemed to catch up with me. The rocking, bobbing, and swaying motions were really strong, enough to scare me that something more than just MdDS might be wrong. Within the next day or so, the sensations got more manageable, but I’ve had a higher baseline of MdDS symptoms ever since.
  • My visual auras and head pain improved immediately after birth. No more visual spots!

The First 3 Months

  • Breastfeeding challenges required me to pump every 2-3 hours for the first few weeks, which meant I didn’t get much sleep at all. My symptoms were high, but weirdly I was able to kind of manage and get through it for the first 5 weeks.
  • At the 6th week, my symptoms were so high that I knew I needed some sort of medication. I tried lorazepam before bed, and although it calmed my vertigo and helped me fall asleep quickly, it made me exhausted and depressed for days after taking it. My symptoms did not improve the following day. I think I was too sleep-deprived for it to work.
  • My daughter then started sleeping in a long chunk at the start of the night (5-6 hours), so I’d go to bed immediately after she did. This definitely helped, but a few weeks later, it still felt like it wasn’t “enough.” My theory on all of this is that I wasn’t spending enough time in the deep sleep phase, which was exacerbating my symptoms.
  • Mornings were awful. I woke up exhausted to the bone. I usually felt nauseous (like first-trimester nausea) and struggled with high vertigo. There was rocking/bobbing/swaying, but also a dizziness and indistinct constant motion. I didn’t feel comfortable driving. I cried most mornings, which I figured was normal because I felt so terrible.
  • Nights were hard. It was triggering to be feeding a baby in the dark with high MdDS symptoms. I would sit across from her crib holding her, watching her crib sway back and forth.
  • I ended up talking to my OB, neurologist, and lactation specialist/nurse practitioner about my struggles, and I’m so glad I did. It turns out, some breastfeeding women have symptoms like these in the morning when breastfeeding hormones are at their highest (prolactin and oxytocin) and dopamine is low. The recommendation was an antidepressant that would help with vestibular migraine, MdDS, and offset the breastfeeding hormonal shifts. 25mg of Effexor seemed to fit my needs in all areas.

After Effexor

  • I’ve tried really hard the whole time I’ve had MdDS/VM to avoid prescriptions as much as possible. This experience reminded me that there are times when lifestyle medicine, strategies, a great attitude, and hard work don’t matter. I physically needed medication to function well. Day one on the Effexor, and I felt more energetic, less vertigo, and calmer. No more nausea or crying in the mornings.
  • Four months later, my symptoms are typically 2-4 out of 10, I’m able to cope with my still-not-great sleep situation, and I’m able to drive and use technology without concern most days (both of which were very difficult postpartum). I have good days and bad days, and I can’t say I feel like I did pre-pregnancy, but I feel well enough to do what I need and want to do.
  • I have continued to use the Cefaly daily (usually just 20 minutes before bed, but sometimes more), Timolol Maleate eye drops as needed, and some extra magnesium on bad days.

Being a Mom

  • I love being a mom more than I have loved doing anything in my entire life. I love my daughter. I love seeing my husband as a father. The joy is beyond words and far exceeds the challenges that I’ve been through and continue to face. I look forward to each day with her with giddiness. I can’t wait to see her smile and watch her learn and acquire new skills.
  • I’m hoping to do it all again in a few years. I can’t think of a better way to explain why other than to say that it’s beyond “worth it” even with a vestibular disorder (or two).

Relationships and Self Rebalanced

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!

I hope you will check out Self Rebalanced and Relationships Rebalanced!

Spirit Rebalanced

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.

Mind Rebalanced

Brain fog can be an extremely debilitating side effect of a vestibular disorder.

In the latest episode of Life Rebalanced Chronicles, Mind Rebalanced, 9 vestibular warriors discuss what it’s like to cope with cognitive and mental changes associated with our vestibular disorders.

Here is what I wrote it my post, Landlubber: My Symptoms way back in the early days of this blog to describe it:

“One of the most difficult aspects of my MdDS to explain is something called “brain fog.” I still have the intelligence and abilities that I had before MdDS, but I’m more forgetful and have difficulty making decisions or figuring things out if I’m not rested. It reminds me of trying to think with a really bad hangover or after going a few nights without sleep. Tasks that require a lot of working memory are more difficult (like doing math in my head or figuring out directions with a map). Until recently, I would need long breaks after thinking creatively or working on new ideas or plans. In the first two weeks after returning from my trip, I had significant word-finding issues. This was very strange for me because I’m a speech-language pathologist, and I teach strategies for word-finding issues for my job. Most of the time I’d have to go to sleep before I could think of the word or name that I was trying to come up with. This went away completely after the first couple of weeks. The reduction in this “brain fog” has been the biggest and best improvement I have made since the symptoms began. I would not have been able to write this blog before the “brain fog” lifted. I was lucky to get through the mental activities required for a workday, and then came home mentally exhausted.”

Nowadays, I feel pretty sharp unless I’m having a high-symptom day or I’m running on low sleep! There is hope, and healing is possible.

Watch the latest episode of Life Rebalanced Chronicles, Mind Rebalanced, at the link below!

Mind Rebalanced

Life Rebalanced Chronicles: Body Rebalanced

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!

https://www.youtube.com/watch?v=yIRiGXavYww

Thanks for watching! Please share with anyone who you know that would benefit from this video series.

Showering Tips for Vestibular Migraine and Mal de Debarquement Syndrome

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 Tips for Mal de Debarquement Syndrome and Vestibular Migraine

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.

  1. Look at the horizon.
  2. 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.
  3. Try ginger chews, tablets, or tea.
  4. Smell peppermint oil or have it as a gum or tea.
  5. Push the acupressure point 2 finger-widths below the writs, or use special wrist bands.
  6. Stay hydrated, eat a light meal, and avoid alcohol and caffeine. Don’t travel with a hangover!
  7. Keep a comfortable temperature by wearing layers or using a fan or A/C.

Managing Tech Triggers With Vestibular Migraine or Mal de Debarquement Syndrome

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Keep your distance from screens. Sit at least 20 inches from a computer screen. Sit at least 8 feet from a TV screen.
  6. 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.

Shopping with Dizziness and Vertigo

Stores can be minefields of symptom triggers! Here are a few tips for shopping with MdDS and Vestibular Migraine.

  1. To cope with bright lighting, try blue-blocking glasses, migraine or FL-41 glasses, sunglasses, or wearing a hat with a brim.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.

Pregnant Without Land Legs: The Third Trimester

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.  

Coping Strategies

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:

  • Cefaly device
  • Timolol Maleate eyedrops
  • Light sensitivity glasses (I’ll bring both FL-41 and blue-blocking glasses)
  • Peppermint oil
  • Ginger chews
  • Sea Bands
  • relaxation techniques

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!