I Spent Most of Last Week Here. And Not by Choice.

It was a bad, bad week.

For those who need a refresher, I have a terrible problem with my vestibular system — the system that helps your brain process motion and sensory information and helps with balance. This is separate from my regularly scheduled issues with Lyme, Mold, CIRS, etc.

It’s complicated, but I’ll try to make it simple. I have two problems. First, I have severe nerve damage in my left ear — the result of a virus. Who even knew that could happen? It turns out ears are critical to balance, as they are the first to detect motion, and then send signals to the eyes to make adjustments in response. Since I have nerve damage, the memo gets to my eyes too slowly, which makes me extremely prone to motion sickness. More on that later.

Problem number two is I have a ridiculous condition called Mal Debarkment Syndrome, or MDDS. MDDS typically strikes after you’ve been on a cruise. While at sea, your brain adapts to the motion of the ocean, but when you return to land, your brain is supposed to re-adapt to land mode. For some people, this re-adapting does not occur, and you end up feeling like you are on a boat 24/7 even when you are on land. This happened to me, most likely because of the nerve damage in my ear. (To clarify, it’s not uncommon to experience a rocking motion after being on a cruise, but for most people this resolves in a matter of days. With MDDS the rocking does not go away).

MDDS is poorly understood and there is not much treatment. Fortunately, Mt. Sinai Hospital in New York has a treatment program which helped me. After treatment there to knock the MDDS down, I started Vestibular Therapy, which is basically PT for the brain, and helps with the nerve damage. The damage is irreversible, but the side effects can be diminished with therapy.

My Vestibular Therapist told me it’s not possible to fully recover from MDDS without an intact vestibular system, which I don’t have because of the nerve damage.

I have been living with MDDS for about a year and a half, and it has been extremely challenging. I’m learning it’s a cycle of beating it into submission only to have it flare up again. Typically, I have a flare up every four to six weeks. The flare ups can last anywhere from hours to days to a week or more.

I am not a good enough writer to adequately describe the misery of an MDDS flare up. I have endured all manner of physical and emotional suffering these last 11 years, and MDDS takes the cake.

It generally starts with a sensation that something feels “off” in my head and escalates from there. The symptoms I experience during a flare up are:

  • Intense nausea (if 1 is no nausea, and 10 is vomiting, I am around an 8 all day and all night).
  • Pressure behind my eyes and sensitivity to light that is so extreme I have to wear sunglasses in the house.
  • An inability to look at any screen (TV, computer, phone), as this intensifies the nausea.
  • An inability lay down when I sleep, as this intensifies the symptoms. Sometimes I sleep in a chair, sometimes I sleep propped up in bed.
  • A strong gravitational pull inside my body that makes me feel off balance all the time.

Those are just the physical symptoms. Then there’s the emotional distress. It’s not uncommon for people to be unable to shake their MDDS symptoms. In other words, their whole life is a flare up, as I’ve described above. So, I am “lucky” my symptoms come and go, but every time they come, they bring the fear this is the time they won’t leave. I can’t describe the terror of that. People with MDDS commit suicide, and I can see why. (I’m not in that place, so you don’t need to worry about me).

This last flare up was a bad one. It lasted a week, and I spent a large chunk of it in that chair, as movement makes everything worse. Thankfully, I found one thing that does not make my symptoms worse — reading a paper book, and that has been a saving grace.

So, spent a good part of a week in a chair reading. I realize that sounds relaxing, but it’s not under these circumstances. And the whole time I’m in that chair, the things in my life that I want and need to do are going undone, which can be such a blow because forward momentum is hard for me to come by. And that’s when I need to flex my mindfulness muscles by taking note of my thought patterns. When I catch myself getting frustrated I remind myself the problem is enough on its own. I don’t need to make it worse with my thinking. It’s already plenty bad. I’m not going to say I can mindfully move myself into a place of complete bliss and acceptance, but I can go pretty far in that direction. And it helps, it really does.

So that’s the story of of the flare ups. But MDDS and my ear nerve issue are part of my life every day, even when I’m not having a flare. I am not exaggerating when I tell you walking is just about the only activity that does not make me motion sick (and it does make me sick when I’m having a flare). Yesterday I got motion sick from a short bike ride. I got motion sick from Pilates (for about four days from one session), I’ve gotten motion sick from doing push ups, I’ve gotten nauseated in the bath tub, I got motion sick from five minutes on a Peloton. I get motion sick when things move in front of my eyes — traffic, a river current, the lines on the freeway, a country road with fences on either side.

Only rarely can I ride in a car without getting motion sick, so I drive nearly all the time.

And there are certain things that are simply off limits: amusement park rides, any kind of a swing (even a porch one), going on a boat of any kind, going on a ski lift or gondola.

Busses and subways fall into the “sparingly and with caution” category.

I have to take vestibular stabilizing medication when I fly, or flying would be out. (If you’re wondering, it’s Valium, so I can’t take that whenever I want to do one of the above activities, as that would be too much Valium. Plus, I don’t like the side effects).

Turns out those ear nerves are really important.

Aside from the motion issues, I seem to have permanent sensitivity to light now. I cannot watch TV without sunglasses, even when I’m not having a flare up.

I could get depressed about this if I wanted to. But I don’t want to. I want to live my life as best I can within the confines of what’s realistic for me now. It could be worse. There’s always something worse. And I try to keep that perspective. But I’m also sure to give myself plenty of compassion. Because while it could be worse, it could also be a heck of a lot better. And I’d be lying if I said that didn’t hurt. If I didn’t feel loss. It’s important for me to allow myself to feel those things. But it’s also important for me not to allow myself to wallow in those things, or become a victim of those things. It’s a fine line and I walk it every day.

Self-compassion. Perspective. Mindfulness. It’s the only way I can keep myself going.

It’s Been A Minute.

Ok, more like a year.

It’s interesting that my last post nearly a year ago is about how my brain fog makes it difficult to function. That pretty much sums up why I haven’t written anything in a year.

It’s been a time, and I couldn’t possibly tell you about all of it. Let’s just say 2019 was not my best year, and 2020 got off to a rough start. The headline is two significant things hapened:

First, we went on a cruise in January 2019, and it left me with a ridiculous condition called Mal DeBarkment Syndrome (MDDS). It’s as heinous as it sounds. Mal DeBarkment Syndrome basically means your brain doesn’t adapt to being on land after adapting to being at sea. The result is you feel seasick on land. 24/7. It’s incurable and can be extremely debilitating.

For the first two months I had MDDS, I was so nauseated I literally could not move from a chair, and only got up to use the bathroom or get food or go to bed in the evening. Yes, you read that correctly. Two months in a chair.

We found a treatment program at Mt. Sinai hospital in New York City, and I had a week of treatment there in late February 2019. The treatment helped but did not cure my MDDS and I had to return for treatment again in the summer.

In the course of being diagnosed with MDDS, it was discovered I have permanent nerve damage in my left ear, which likely made me more susceptible to MDDS. These are actually two different problems. Each with their own treatment plans. The MDDS causes nausea and makes me feel unbalanced as if I was on a boat. The nerve damage causes nausea of varying degrees of severity.

As of now, the MDDS is under control, and I am currently undergoing Vestibular Therapy (PT for the brain) for the nerve damage. The vestibular therapy helps, but it’s not a cure. I have periods where I feel just fine, and periods where I am debilitated by nausea. Generally, I’m able to string together three to four weeks of feeling well before suffering a bout of nausea that can last hours, days or weeks. I have been living with this uncertainty since January of 2019, and it’s likely to continue indefinitely. I’m learning to make hay when the sun shines, and rest when it doesn’t.

These vestibular issues have nothing to do with my regularly scheduled problems. And in some ways, they make me appreciate my regular problems, as they generally easier to power through than intense nausea and instability.

Speaking of my regularly scheduled problems, I have news on that front. In summer of 2019 I was diagnosed with toxic mold illness, also called Chronic Inflammatory Response Syndrome. THIS IS BIG NEWS. My doctor believes I have been suffering from untreated mold for years and believes it’s the reason I have not been able to regain my health in spite of so much effort. I hope he’s right.

I started treatment for mold last summer, and have had great difficulty tolerating the medication, so it’s going to be slow going. It’s extremely common for patients with mold illness to be exquisitely sensitive to medication, so I am not alone on that front.

My mold story is long and complicated and I will get to that in more detail in future posts.

For now, I just wanted to try and get back on the horse. Between the nausea and the mold treatment making me very sick I just haven’t had the will or ability to write much of anything.

But here we go. I’ve taken the first step, and I’m hoping I will have the energy and motivation to continue.