My First NMO Heat Intolerance Experience

The best feeling for me during the summer months was the warmth of the sun wrapped around my skin and getting a golden-brown tan. Oh, how I used to love the summer before getting diagnosed. Growing up, my summer was almost always spent in the Dominican Republic with family where the average temperature on a summer day is around 92 degrees. I loved spending my days on the beach and soaking up the warm salty breeze that made me nap like a baby. I even enjoyed the extreme heat waves of New England summers. Grabbing my favorite frozen blizzard and ice cream with my kids. I was able to enjoy the sun until I was diagnosed with NMOSD.

My first summer with NMOSD

When my diagnosis came along, I didn’t realize things were going to severely change. My very first summer with NMOSD, I wasn’t educated or warned by a healthcare professional about what could happen with temperatures changes and how it could affect my body. I had no clue what to expect when the warmer weather came my way.

I continued to live my life accordingly, until the warmth stopped me.

My very first trip to the Dominican Republic after being diagnosed was with my husband and kids, and it was a terrifying experience. As soon as I stepped out of the airplane I felt like I couldn’t breathe. Mentally, I wanted to reverse my steps back into the cold dry airplane, but I couldn’t. Immediately after going through immigration and picking up our luggage, I felt something was wrong.

Signs of heat intolerance

I felt a shortness of breath and a heaviness all over my body. As we walked to our car service, I asked for something cold drink to drink to see if it would make me feel better. Here was my first mistake, because instead of drinking water I started drinking ice cold beers. It was refreshing and it felt like an avalanche of snow going down my esophagus.

On our way to our destination, I went through 2 more beers because again it made me feel nice and cold inside. Not remembering I had bladder incontinence, and by the time we reached our destination I had to urgently urinate.

I remember running to the bathroom and unbuttoning my pants while looking around the small 4x6 bathroom with no ventilation. The building material in Caribbean countries are cement blocks and it is hot.

As I sat on the toilet, I began to feel lightheaded. I started to sweat grape sized balls of water down my forehead and back. I remember calling out for my husband to open the door of the bathroom because I knew something was wrong. At this point I was unable to button my pants, and I was leaning towards the small sink losing strength. My husband opened the door to bathroom and escorted me to a chair brought by a family member.  I was given a liter of ice water to drink while someone was putting a pack of ice on my head and neck.

Reality check

The reality is that I wasn’t drinking enough fluids because of my bladder incontinence, rigid body spasms and inconvenience of self-catheterizing at a public bathroom.

At the time, I believed that the less I drank the less I would need to use the bathroom - not really knowing the consequences with NMOSD.