The various stages of a Secondary Endolymphatic Hydrops attack

This past weekend I dealt with a Secondary Endolymphatic Hydrops flare up.

Ironically, it happened just days after I wrote to a friend who was inquiring about how I was feeling: I don’t think regularly about my brain anymore. Ha! Well, I thought about it this weekend, that’s for sure.

Saturday night, my brother cooked one of my family’s favorite meals, a corn sausage chowder. It’s delicious, but I wasn’t paying attention and he used the super salty chicken broth that I use when cooking something I won’t be eating. It’s very delicious but it has 3 times the amount of salt than the chicken broth that I use normally. So that night, my ear started filling up.

Here are the stages of my hydrops attacks:

I start feeling grumpy.

I now know that if I’m feeling grumpy/overwhelmed for no apparent reason it’s probably because my balance is off. It’s not enough to say I feel dizzy, but my brain is sending messages that something isn’t right. I’m still not to the point where I automatically tune into the grumpy=bad balance equation, but I’m slowly getting better at connecting the dots.

I start feeling discombobulated.

By this time, I am noticing that my balance is off. I’ll notice that I’m not comfortable just standing around or sitting in a chair without my head being supported. I also start feeling the urge to take a walk as I would rather be moving than standing or sitting. I also start to analyze why I could be feeling dizzy. Sometimes it takes me a while to figure it out. It took me a whole day and a half to realize why the soup had made my hydrops flare up!

I also begin drinking lots of water and I increase my diuretic supplements (not my prescription!). And I make sure to cut most salt out of my diet.

I start feeling like things are moving when I’m still.

This can take a couple different forms.

If I’m lying down, it feels like I’m moving/floating on a rippled surface. 

If I’m sitting and my head isn’t supported, I feel like my head is slowly going in circles. 

But I can usually rest in a reclining position and feel okay.
This is when I give myself permission to do nothing and watch tv/read books. I am careful to avoid too much stimulus on the computer as scrolling can make it worse.

I start feeling like everything around me is moving.

I’ve had about 6 of these attacks (maybe more?), all happening randomly during the 6 months between my diagnosis and when I had surgery for a deviated septum that was keeping my sinuses and ear from draining properly.

But when they did happen, it was nasty. They would usually start coming on in the evening and I would give up on getting a normal night’s sleep. After a couple of them, I figured out that if I positioned myself just right on the couch, with my head supported and tilted back at just the right angle, I could mostly stop that feeling of movement. Then I would watch tv until I fell asleep.

It’s not going to last forever!

Having a hydrops attack isn’t pleasant. But now that I’ve been around the block a few times, I’ve gotten to the point that I don’t start freaking out when I realize one’s coming on. I do get discouraged though! It’s hard to fight that feeling, but I just try and remind myself of the truth (it’s not going to last forever!) and that helps.