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.

2 thoughts on “Adjusting the Sails

  1. All of what you are saying rings so true to my situation. I always thought doctors could help us when we are sick. Even though they have good intentions, sometimes they just don’t know what is best, so we have to learn to be our own advocates. I was prescribed lorazepam in the beginning because I couldn’t even sleep I was so dizzy. I found that every time I took it, it would give me rebound effect headaches. I decided on my own that it might be slowing down my brains healing process, so I stopped taking it. I don’t even take Advil or Tylenol now for headaches because I am so sensitive to everything. A clean diet, and trying to avoid trigger foods really helps me. My body too has become so sensitive to everything from food, to noise and smells. Everyday is different. I too try to keep going even though I may sit through a whole evening while rocking. I am doing vestibular therapy for balance, which has helped. I just hope and pray between exercise, therapy and a clean diet my body will go into remission. I know I will never have a normal brain because I’ve had this condition most of my life. I had an unfortunate accident that caused it to come back with a vengeance.
    Wishing everyone hope and health as you navigate this journey.

    Liked by 1 person

    1. Hi Janet! Yes, we are totally going through this together. I have the same hope, that focusing on wellness will lead to less dizziness and boatiness! Not a quick fix, though. Gotta make the best with the brains we have, right? 😊 Thanks for commenting. It helps to hear we are on the same voyage. ❤️

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