Living with Mal de Debarquement Syndrome: Challenges and progress in everyday life

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my fifth in the series. 

As I mentioned in my last post, the past six months I have been making slow but consistent progress. Starting in May, I began feeling like I was getting my life back. All of a sudden, I had the energy and ability to focus on projects and have some sort of social life.

Here are some areas that I’ve made significant progress with my MdDS in the past few months:

  • Standing. This varies dramatically depending on how tired I am. Most of the time I can stand and have normal conversations with people.
  • Sitting. As long as I have a back rest and my seat doesn’t slope back, it’s perfectly normal.
  • Swimming. I got in the river on Saturday and swam for a few minutes. My brain didn’t freak out at all.
  • Running. Starting to run regularly, even maybe some couch 2 5k will be happening.
  • Balance. I was pretty impressed with how comfortable I felt navigating the rocks at the river last weekend. I didn’t feel unstable at all.
  • Wearing heels. I wore heels to church a few weeks ago for the first time in almost 2 years.
  • Looking down.
  • Movies. I’ve gone to the theater more times in the past 6 months than I have in four years.
  • Reading. Huge sigh of relief here! I can read the majority of books and my phone apps easily.
  • Walking on the sand. Didn’t bother me at all this month at the beach.
  • Campfires. It used to be too much movement, but not anymore.
  • Playing basketball. I can still shoot some hoops!
  • Riding in the car. I can now sit in the front passenger seat without getting sick, and I’m making progress on being able to sit in the back seat.

Here’s what some of my current struggles look like:

  • Standing. If there’s too much visually going on, then I start rocking and get tired quickly. It helps if I spread my feet, but I still get tired.
  • Swimming. It felt good at the time, but I was dizzy once I got home and had to rest all evening.
  • Running. I’m mentally exhausted after running, in the best of ways. I just need to lie down for a few minutes to let my brain catch up.
  • Bending over/looking up. I still don’t find these comfortable at all. But I can do them, my brain just fights me and I have to push through it.
  • Stress. Is not my friend. I have to be careful because if I push it and feel too rushed, I get dizzy. My tolerance is increasing though.
  • Movies/tv. I still have to close my eyes if scenes with a lot of movement or panning are happening.
  • Reading. It’s still difficult if the text hits my eyes wrong or the page is too wide for my eyes to track comfortably.
  • Walking in the dark. If it’s dark and the ground is uneven, I have to walk very slowly.
  • Playing basketball. It was overwhelming and I felt really slow, but I didn’t get dizzy at all.
  • Riding a bike. I’m not sure if this should be on here at all, as I’m not sure if my functional neurologist would ever give me the okay on it. But it still freaks my brain out to think about doing it.
  • Riding in the car. It’s still not easy for me to ride in the backseat.

Looking at this list, it’s easy for me to feel a little discouraged yet also extremely grateful. I know that there is more progress to be made, but I firmly believe that I will keep making it, Lord willing! There will always be things that will be hard, and I’ll probably be pushing boundaries for a long time, but that’s okay. I don’t mind the challenge most of the time!

Today, She Is By Molly Miltenberger Murray

IMG_3771.JPGToday, She Is contains the coming-of-age story of Molly Miltenberger Murray who was the miracle that lived. Run over by a boat when she was 15, Molly wasn’t expected to live, yet did. Rather than telling her story as a series of concrete events filled with medical terms, Molly takes us into her mind and it’s thoughts and feelings. Rather than just say “I was in pain” Molly describes her pain by painting pictures with her words that capture what was going on inside of the brain she felt trapped by.

The twinges snap in and snap out. Better than the days when I can’t hear at all and I swim through my head to register the scene in front of me; like looking in the glass of an aquarium; from her, I am looking out, trying to lip-read what they are saying but I am so bad at it. (p. 47)

This book was a little confusing to me at first. Molly’s style of writing is very different than the other types of concussion survival stories that I had gotten used to reading. It took me a few chapters to get in to it, but once I did, I really appreciated the artful way that she painted pictures of how she was feeling. Instead of just reading and understanding, I felt along with Molly as she recovered from her accident, and that made reading this book exhausting (in the best way!) as I was not only re-living Molly’s feelings, but my own feelings were layered in there too.

Who would I recommend this book too? Anyone!

On a personal note, Molly’s husband Gordon is being called to be an assistant pastor at my church. They’ll be moving from Scotland to Oregon this fall and I’m so excited to hang out with her more!

Weekend Links & Updates

  
Links:

  • After reading this post about artist Johane Roy who deals with MdDS, I fell in love with her paintings.
  • A nice summary about why we should be eating a rainbow variety of vegetables

Updates:

  • I ran two times this week. At one point, I was able to run for about half a mile!
  • Went to the beach one day with friends visiting from California. I did some long stretches of driving and it went well. On the way home, I drove the two hours home and I could tell my MdDS flared up but it quickly subsided as I rested afterwards. So grateful.
  • I also managed to ride for about a minute in the back seat of a car yesterday. First time in almost two years that I haven’t gotten seriously disoriented and panicky sitting in the back seat! Baby steps!
  • And last but not least, I went swimming for a few minutes in the river. It was wonderful, but it definitely pushed me to the edge…

Living with Mal de Debarquement Syndrome: Slow progress

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my fourth in the series. 

After beginning treatment for my Mal de Debarquement, it’s been a series of sloooooow improvements. Beginning in January, I continued with seeing my functional neurologist once a week for about four months.

Each visit usually consists of several short sessions in front of the optokinetic stimulus. It’s hard for me to guess how long the session goes for, but maybe 30-45 seconds? Then I take a quick break and close my eyes for about that same amount of time. I often will stand up at some point and we’ll check my progress. I simply stare at a spot on the wall, or the thumb on an outstretched arm and we see how much I rock or sway. It usually takes me two or three times to get to the point where I no longer sway, and often Dr Z or Dr Eric do some other minor adjustments or exercises to fine tune stuff and compensate for my hydrops.

Right around the time I started doing the treatments at home, I was able to phase out how I often I went, so for the past two months, I’ve been seeing the functional neurologist every other week.

I suspect that if I shelled out the big bucks and wanted to pay several thousand dollars to do an intensive, I would be making faster progress. But then again, I find the MdDS exercises to be extremely fatiguing, so I’m not sure if my brain would’ve been up for that.

Progress has been slow at times but it has been progress with something that I thought was incurable, so I’ve never been down in the dumps for long. I’m filled with gratefulness that I seem to be coming back into a life that isn’t dictated by constant balance fatigue.

Weekend Links & Updates

acupuncture needles in the head

 

Links:

Updates:

  • The picture is courtesy of my mother during my acupuncture session this week. I started going about once a week at the end of 2013, and have continued it faithfully. For a long time, I did it once a week, but now I’ve moved to every other week. I notice that if I do it regularly it helps keep my hydrous ear slightly less full.
  • This week I’ve noticed increased stamina thanks to pushing myself at the beach all last week. It was easy to be distracted and push my limits last week and because of that, I’m not getting so overwhelmed and tired as easily. I’m trying to continue the trend at home and keep pushing myself without over doing it.
  • Along those lines, this week, I ran. Not for long. I would run for a minute, walk for a minute. I think I repeated that four times and at the very end I started feeling almost-dizzy, so it was just walking after that. But just that little bit was a big deal, as I wasn’t sure I would ever be able to run again. It wasn’t too bad, although my neck and shoulders were sore the next day!

Living with Mal de Debarquement Syndrome: Beginning the treatment

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my third in the series. 

After my appointment with the functional neurologist, we arranged for me to come in for a one day intensive to work exclusively on the Mal d Debarquement Syndrome symptoms using a variation of Dr. Dai’s exercises.

Dr Z had begun using optokinetics on a large tv screen several months prior and had had mixed success with it, so he wasn’t really sure what to expect. Eric (an intern) was there to observe.

I sat down in front of the tv screen and prepared for the worst. He then attached an oximeter to make sure I wasn’t going to start having a panic attack. Once he had started the optokinetic program (bars in black and white going to the left), Dr Z stood behind me and moved my head gently from side to side a few times. It definitely made me feel uncomfortable, but I wasn’t dying.

Afterwards, I sat for a minute to feel things stabilize and then stood up and focused on a point to see how my balance was. AND IT WAS BETTER. We all burst into grins. It was the last piece to my puzzle! Dr Z and Eric hadn’t seen such a clear result from the exercise so they were excited, and yes, I was beyond thrilled!

The rest of the day, we repeated the exercise every hour or so until it was time to go home. Each time I felt a little better. Although, my goodness, it made me tired! So, so sleepy. But that’s common when you’re doing such intense exercises, so it was a good sign that things were changing.

I came in two more times that week and the next and I could slowly feel my stamina build. Each time I went a little longer before it felt like the MdDS was back to normal. By the end of two weeks, it had gotten to the point where instead of constantly swaying myself backwards, I just swayed in place. Which was a welcome improvement!

Weekend Links & Updates

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Updates:

  • Yesterday I got back from a week long vacation at the Oregon Coast (thus no links today). Our church hosts a family camp there every year. This year we were blessed with beautiful weather the whole time, and it didn’t rain at all. Over the past 20 years we’ve been going, I think this might be the second time that’s ever happened.
  • I did pretty well over all. The first and second days I had troubles with my MdDS flaring up, mostly due to the long drive and my neck being tired. Thankfully, it calmed down by Wednesday and I felt pretty good the rest of camp.
  • I was excited that even though I wasn’t doing my MdDS exercises every day, I seemed to recover pretty well from my attacks. I definitely didn’t expect that!

Living with Mal de Debarquement Syndrome: My Diagnosis

Mdds 2June is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my second in the series. 
I was officially diagnosed with Mal de Debarquement Syndrome in December 2015, over a year after having the concussion that caused it.

I was diagnosed with it in a somewhat roundabout way. Right before Thanksgiving, I was scheduled to do a one day intensive at the functional neurologist and in the morning, I did a revaluation. They had slightly changed the stimulus in the testing program, and the change threw me into a full blown panic attack. I had never had one, so I didn’t realize what it was at the time and continued pushing through it.

We’re still not sure why I responded in such a way to the stimulus, but it could have been that I was slightly hypoglycemic. Anyways, the end result was that I felt weak and shaky but, miracle of miracles, I could lie flat on my back without getting dizzy. I hadn’t been able to do that since my second concussion.

That puzzled my functional neurologist and I think he pieced together the fact that the stimulus was similar to that used by Dr. Dai and my response was so extreme with an overall improvement to begin suspecting that I had Mal de Debarquement Syndrome. After he told me about his suspicions at my next appointment, I immediately went home and googled it and it all clicked. It was amazing to read about and realize that other people were experiencing what I was.

Weekend Links & Updates

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Links:

Updates:

  • I went out for drinks with a friend Thursday night. I’m always really careful drinking because with hydrops it can easily lead to an attack. I drink very slowly, with lots of water in between sips and often don’t even finish my drink or I split it with someone.
  • My homemade sauerkraut and fermented radishes turned out great! I also have started making coconut milk yogurt to put in my morning smoothies.
  • Remember this book about learning disabilities? Well, my brother who’s 14 has struggled through home school with various learning challenges and this fall will be starting a program created by the author. His interview this week went really well and he’s really excited!

 

Living with Mal de Debarquement Syndrome

Mdds 2June is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome over the next five weeks.

After my second concussion, I had major issues with vertigo. I had never known that there were so many different types! For me, it seemed to boil down to two different types of dizziness.

The first one was where the world was spinning around me.

The second one was what I called “sea legs”, as it felt like I was walking like a drunken sailor when I moved.

After 5 months, I was diagnosed with Secondary Endolymphatic Hydrops and following the treatment for that led to a dramatic decrease in my vertigo, mainly the spinning sensation.

However, I still struggled with feeling like the ground was stable underneath me and my head never seemed to know where it was in space.

Little did I know that this second type of vertigo was a part of the rare syndrome called Mal de Debarquement Syndrome (MdDS).

It would still take another 9 months to figure this out after my hydrops had been cleared up to discover and be diagnosed with MdDS.

After clearing up the SEH, my MdDS symptoms were as follows –

My head never knew where it was in space.
I could not stand still for the life of me; I would rock back and forth unless I stood with my legs widely stanced diagonally.
There was still no way I could ride in the back seat of a car. I was only truly comfortable (and I sometimes felt better than normal!) while driving.
Busy patterns made me nauseated
Lots of movement around me brought on the sea legs feeling
If I laid on my back, I would start to feel like I was rotating to one side, or occasionally, I felt like I was laying on a gently moving raft.
The only way I would feel stable laying down was if I laid on my stomach for at least 30 minutes. Then sometimes I could switch to laying on my side.

In December 2014, all of these symptoms clicked into place when my functional neurologist suggested that maybe I had Mal de Debarquement Syndrome. I had never heard of it (who has?) and immediately researched it at home. It made sense! It explained all of the above symptoms.

Although, it was frustrating to have the diagnosis take so long to get to, it was a relief to find out that I wasn’t crazy!