What’s going on with Rachel? If you follow my social media accounts you likely know that I’ve had a rough couple of months filled with ER trips and doctors appointments. Now that we’ve talked to my doctors fairly thoroughly I thought it was time for a health update.
Stress, Stress, Stress…
Right now my doctors are fairly confident that this flare is my body’s response to some major stressors. At the beginning of the year, I had started a medication for my POTS/NCS that ended up lowering my potassium and landing me in the ER with significant hypokalemia. As dramatic as it sounds, I thought I was dying. I wasn’t warned about the medication lowering my potassium so I wasn’t looking out for it and had never experienced anything like it before. All I knew was that my body was telling me that there was something seriously wrong. For the next several months we did thorough testing to ensure that the potassium drop didn’t do permanent damage to my heart since I’ve had significant chest pain ever since. Thankfully my heart is totally fine.
As the year continued I would still have spells similar to the one that landed me in the ER initially, so we thought my potassium wasn’t leveling out like it should be. I ended up in the ER one more time over the summer with what we thought was hypokalemia, but my potassium levels were on the low end of normal. I was getting weekly potassium checks, taking supplemental potassium, and hoping my body would bounce back.
Then at the end of the summer, our apartment complex became infested with fleas due to another tenant’s cat. For two months I cleaned our apartment extensively, bathed our cat repeatedly, and tried every trick I could find to get rid of the fleas. After flea-bombing twice I finally just gave up out of sheer exhaustion. Thankfully around this time Paul and I were finally able to find and purchase our first home and leave the fleas and our tiny apartment behind! But not before my health totally bottomed out.
Throughout September I was in the ER 3 times for these attacks. Although my electrolyte levels were still coming back on the low end of normal each time, we thought perhaps my body was simply overreacting to the small dips. Because, let’s face it, my body is unpredictable.
All of this comes together to form an incredibly stressful year, full of multiple moments of fear and multiple nights of praying I’d made it through to the next day. Once again I was in the situation of not knowing what was going on in my body and not finding answers easily.
So What Is Actually Happening?
As we’ve looked into it more we’ve found that these attacks aren’t actually electrolyte related, but are instead a sort of exhaustion induced panic attack. It’s difficult for me to come to terms with that because I fought so hard over the years to get doctors to take my symptoms seriously instead of just attributing them to anxiety. I think that’s why I was so reluctant to describe these as panic attacks, even though all of the symptoms were there. I was afraid my doctors would just refer me to psych and dump me without any answers as to why these were happening. It’s not that I didn’t have any stress in my life, but that these would hit in moments where I wasn’t stressed about anything. As soon as I began to physically exert myself they would happen, even if I was completely at ease emotionally. Thankfully my doctors believed me that these were more than just my own mind working itself into a panic and didn’t write me off.
As we continued to do testing we found that I had developed severe fibromyalgia, likely brought on by my original potassium drop/ER trip. Essentially, the initial traumatic ER visit and stressful summer had turned my nervous system into an overactive mess. This, coupled with my pre-existing Chronic Fatigue Syndrome and Dysautonomia, has left my body reeling, resulting in these exhaustion induced panic attacks.
How Are We Treating It?
The problem is that there isn’t much that is working very well to calm my nervous system down and many of the medications or treatments options for my other chronic conditions are actually aggravating my nervous system symptoms. While I could typically get saline infusions to improve my Dysautonomia symptoms (low blood pressure, high heart rate, blood pooling, exhaustion, etc), the saline infusions are currently making all of my nerve/chest/muscle pain worse instead of better so I’ve had to stop those.
Since I’ve been officially labeled “medication resistant,” I have been referred to the Cleveland Clinic’s Center For Functional Medicine. We are hopeful that they will be able to find physical-therapy-like treatment options that will work for me.
So I’m currently on the 6-month wait list to see their doctors and will update via social media when I get the call to schedule my first appointment!
What Are You Doing In The Meantime?
In the meantime, I am having grace with myself. I’m enjoying our new home, snuggling my kitties close, watching too much Hulu, and fighting off depression. I’m not going to pretend it’s been easy. I haven’t been this sick for a long time and I’ve lost a lot of the independence that I had gained over the last two years. I’m not driving, I’m not really up for many visitors, and the last time I went to the grocery store I very nearly passed out, so my limitations are many. Thankfully there are things like Kroger Clicklist, helpful husbands, superwoman mothers, understanding friends and family, and cats.
As I continue to rest and care for my body I am seeing small improvements. I’m not having as many episodes and I haven’t been back to the ER since October 1st. I’ve also gotten almost all of our online Christmas shopping done and binge watched a few TV shows, so my productivity is off the charts.