We Are Back To This.

I had a horrendous MdDS flare up. I am no stranger to these flare ups, but this was one of the worst ever, and it tested every single one of my coping skills.

Let’s start with what set it off. I stepped off a curb. I didn’t fall, trip or step awkwardly. I simply stepped off like I do every single day on my morning walk. But in this particular instance, I noticed my head felt weird. That’s the best way I can describe it. Weird. But unfortunately, I’m familiar with this weird, and I was pretty sure it was going to be the start of something very bad.

It was.

By time I got home, I was well on my way to a full blown MdDS episode. These episodes are different for everybody, but here’s what they look like for me:

  • Intense, unrelenting nausea that is worsened by: moving, lights, looking at any screen, anything moving in front of my eyes — traffic, my hands when I wash dishes, a drawer closing, to name a few.
  • Headaches that come and go.
  • Fatigue.
  • Fatigue behind my eyes.
  • Inability to focus or concentrate.
  • A gravitational pull inside my head that makes me feel like I’m falling backwards — THE WORST feeling.

In other words, Man Down. In a very big way.

I am not exaggerating when I say there is not one thing other than sitting in a chair reading a paper book that does not make all my symptoms worse. And the intensity of my symptoms is not minor. It’s major, major, major. Remember, I have been sick for twelve years. I am used to playing hurt. I am used to powering through. These symptoms are non-power through-able.

So, I sit. And I read. And I stand in front of my TV watching stripes.

Yeah, it’s weird. There isn’t much I can do about the nausea and headaches, etc. except try not to aggravate them. But I can do something about the gravitational pull. For reasons I will never understand, watching stripes corrects the pull. Instantly. The only catch is the pull often comes back several times in the course of a flare up, so I have to do the stripes treatment each time.

The stripes treatment is at the recommendation of Mt. Sinai hospital in New York City, where I have twice gone for extensive MdDS treatment. The treatment involves all manner of looking at stripes, spinning in a chair while looking at stripes, etc.

The at home version temporarily makes me more nauseated, but it takes care of the terrible pulling feeling inside my head, so it’s worth it.

This particular MdDS episode lasted a little over two weeks. It was rough, I’m not going to lie. But every time I got even close to feeling sorry for myself, I paused to remember how lucky I am. Look, I did basically nothing for two weeks. That’s not my choice by a long shot, but what a blessing it was an option for me. I kept reminding myself about that over and over again. If I was still chasing a toddler, or had to work or didn’t have a supportive husband, doing nothing would be incredibly difficult.

Sure, I had moments of lamenting all that I was missing or not accomplishing. Also, it’s just hard to be with nausea and physical pain all day. But when those thoughts arose I thought about all the people who deal with so much worse with much fewer resources, and in that light, it was virtually impossible to feel sorry for myself.

I’m mostly better now, which is why I’m able to write this post. However, the difficult reality is these spells are part of my life. So it’s not a question of if I have another one, it’s when. It’s hard to live with that knowledge, but I try to live my life a day at a time with the confidence I have the coping skills to handle the next episode, whenever it comes.

Just One More Strange Thing……

It’s been a while. That’s because I’ve been mostly unable to look at my computer (or any screen) since early January. In case you’ve forgotten, I was struck with a bizarre illness called Mal de Debarkment Syndrome, or MDDS. And yes, the syndrome is as odd as the name.

Very long story short, MDDS occurs when somebody gets off a cruise ship and their brain does not adapt to the change from a moving platform (the ship) to a stationary one (the land). Said another way, your brain thinks you are on a ship while you are standing still. I can tell you the brain is not fond of this situation. As a result, I felt 24/7 severe motion sickness and nausea that began nearly the moment I stepped off a cruise ship in early January. I felt like I was rocking when I was standing still, I got nauseated from looking at any type of screen, and basically, I was confined to a chair for all of January and February.

MDDS is uncommon, so there is not much treatment available, however, my husband found a program at Mt. Sinai Hospital in New York City. We went up there for a week of treatment the last week of February, which was the first available appointment. It was a long wait, but I was just grateful help was available.

There’s no way to finesse this. The treatment was completely bizarre, and if my husband had not been with me, I probably would have walked out.

It went down in a lab that looks like Frankenstein’s workshop. Take a look.

The first photo is the equipment that monitors and controls what happens in the second photo, which is a light proof booth. The booth contains a chair that can be spun by remote control. The treatment consists of different patterns of light being projected in the booth while the chair spins. The photo at the top of the post shows what it looks like in action.

It was not fun.

Basically, the way they treated my motion sickness was to make me exponentially MORE motion sick. It’s completely counterintuitive, and my husband and I could not fathom how in the world this was going to help me. Our only comfort was we were at a world class hospital, and the treatment was validated by research.

The first day was not promising. I became so sick from the treatment we had to stop early.

The second day was about the same.

By the third day we figured out a rhythm. Instead of the standard two hour treatment, the doctor broke my treatment into two – one hour sessions, one in the morning and one in the afternoon. Also, he slowed the speed of the light patterns, which also helped me tolerate the treatment.

At the end of the third day, we finally dared to hope a little bit.

I left each treatment feeling extremely motion sick and exhausted. I typically had to wait a while before I could even leave the building, which I’m doing in the photo below. And yes, I feel as badly as I look. My thought bubble is “are you f’ing kidding me?”

I left the final treatment feeling worse than ever. We were assured that was normal, and were told it could be a couple of weeks before we would know if the treatment was effective.

So, I arrived home feeling exactly the same as before I went to New York. Not exactly what I was looking for. I spent the first weekend home just as I spent the first two months of the year — sitting in my chair. I tried to keep the faith and not worry, but it was difficult. For the first time I began to panic that I might not ever kick MDDS.

The way my husband describes this phase is that my brain was like a snow globe that had been shaken up, and we just needed to hang in there until all the little flakes began to settle. I held on to this image, but I have to confess I was not feeling particularly optimistic.

Blessedly, the flakes began to settle about four days after my last treatment. It’s now about a month since treatment, and I’d say my snowflakes are at least 90% settled. I still have spells of dizziness and nausea, but they are completely manageable. I still hope for a full recovery, but if I never get any better than I am in this moment, I can live with it. Amen.

Double amen.

I am so incredibly grateful to the doctors at Mt. Sinai who had the curiosity, smarts and motivation to develop a cure for this bizarre, yet debilitating syndrome. I literally do not know what my life would look like if I hadn’t been fortunate enough to benefit from the treatment.

Lyme disease has ravaged my body and mind, however, I can usually manage to function to some degree, even on my worst days. By contrast, MDDS was fully incapacitating. Severe nausea and the sense you are moving when standing still simply cannot be powered through. Any movement at all, even simply turning my head, make everything worse. It was hell. If you read about MDDS, the words “devastating” and “debilitating” come up quite often, and I can tell you they are true.

I thought I saw the devil in my lyme and anxiety struggles, and I suppose I have, but MDDS was an entirely different devil, and one I hope to never see again. On that note, relapse is a very real possibility, so I have to take measures to try and prevent it — I cannot go on any type of boat, it’s best if I drive when in a car, and I need to take medication when I fly. This all adds a little hassle to my life, but I will take hassle over debilitation any day.

Now, with MDDS mostly in the rear view mirror, I can return to my regularly scheduled health problems, which is a blessing, odd as that sounds.