Week 11 Recap: More Questions, but No Answers

Although this past week was better than the one before, it was still full of questions as new symptoms seemed to pop out of nowhere.

For example:
Can GERD cause spasms or trembling of the esophagus? If so, I finally realized the connection this past week. While still in bed on Sunday morning, I noticed that when I shifted positions, my esophagus would start trembling and then eventually settle down. It always happened on the same side on which I was laying. I wondered if a little stomach acid wasn’t leaking into my esophagus with the changing of positions. Was the trembling a reaction to that acid? Could this cause any kind of damage to the nerves?

And most importantly:
Why was this still happening on a strict g-free and GERD diet? The reflux was bad enough that I couldn’t eat because my stomach always felt full, and I spent most of the week with a constant knot under my sternum. I wondered if my esophagus wasn’t inflamed because it was so difficult to eat and drink.

I started out the week with my usual “physical therapy” which consisted of two 30-minute treadmill walks, about 20 minutes of Pilates, and about 10 minutes of basic weight-bearing exercises— six days a week….

...well, that was the plan, anyway...

Monday’s exercise was fine— in fact, almost too easy! The previous week I had difficulty keeping my heart rate down, and now all of a sudden, I couldn’t keep my heart rate up! Even the Pilates and weight-bearing exercises seemed suddenly easy. This made me happy because I felt like I finally cleared another hurdle and was getting stronger!

...But it didn’t last…

Tuesday started out fine, but I began to feel double and triple palpitations as opposed to a single random one here and there. Though multiple palpitations had happened in the past, this was the first time it had ever happened more than once in the same day! Additionally, while I was taking one of my kids to the middle school for band, I felt a pain in my upper left chest that rapidly branched out and then dissipated. It was weird.

Weirder still:
By late afternoon, the jaw behind my left ear began aching. During my second treadmill walk my heart rate was not very high but still felt like I couldn’t get enough air. I experienced a lot of congestion in my neck—as though someone’s hands were around my neck. Why were these double and triple palpitations happening and why did it feel like I couldn’t get a good breath? Will more happen like this?

That same night, we had company come for a short visit that and at about 9 o’clock I started to speak and couldn’t without stammering and stuttering. I couldn’t get my lips and tongue to shape the words I wanted to say. I have no idea what could have caused it but it seemed to clear up a little later—probably in less than a minute. Had I not tried to speak I would never have noticed! Trying to ignore the thoughts racing in the back of my head, I ended up taking a ½ clonazepam to settle myself down and go to sleep.

Medicated or not, I barely slept, and that was the story for the next couple of days. I resorted to one treadmill walk and no other exercise during that time because the heart palpitations seemed to occur much more frequently than before. Also, my neck still felt tight during the walks, even though I had slowed them down considerably, and my chest would ache for the rest of the day. The lumps and bumps in my neck seemed to ache (not my throat, just my neck) and felt tender. I went around with two knots all day: one at the base of my throat, and one on the top of my stomach.

I finally had to admit that Tuesday night’s inability to speak sounded suspiciously like a “mini stroke” or TIA (transient ischemic attack). I knew that a TIA could possibly lead to a full-blown stroke and determined I needed to see my doctor. My doctor performed a neurological evaluation and noticed that I have a “bent” carotid artery—the same left carotid artery that had been numb and tender most of the week. He ordered a head/neck MRI for the following week and told me to take an enteric-coated full-strength aspirin (325 mg) every day for now. I knew this was to help thin the blood (avoiding more clots), so as long as it didn’t irritate my stomach (hence the enteric-coating), I was fine with that. And still, on the way home, I experienced another double or triple palpitation, even though I was actually feeling pretty good. Why?

By the weekend, the GERD was not so bad and the constant knot seemed to die down. I slowly reduced the clonazepam throughout the week and hope not to need it again…. but it is there to get me through any more anxious nights.

I have my own theory as to why I might have blood clots floating around, but since I am not a doctor, it is just a lay-person's wild idea.  Back when my heart wasn't doing so well (some kind of myocarditis or cardiomyopathy), my ejection fraction dropped to borderline low (55%).  When the heart does not pump out efficiently (systolic), some of that blood can kind of "back up" so to speak-- and cause some clotting.  With all my aerobic exercise since then, perhaps some of those clots have been breaking loose-- whereever they may be hidden.  But that is just my wild-eyed-theory and probably far from reality.

Just the same, I experienced too many mysterious events this week and as usual it can be very frustrating. My hope is that we will have answers this new week with the MRI and a GI consultation on the same day.

Stay tuned…

Week 6 Recap: Missing the Hurdle

Just when I thought I was over one hurdle, the next one came up and I missed it completely. Two days into the new week, I caught a cold and my feeling good days suddenly vanished and turned into feeling sick and miserable days.

I still cannot help but wonder about my diagnosis because it all seems so strange. I will fail the blood tests for celiac, but have the Dermatitis Herpetiformis associated with the disease. Though it is true that my digestive system feels better being off gluten, couldn’t that also be true of most people who eliminate gluten from their diets?

Additionally, I thought perhaps we had caught the celiac disease early on, thinking maybe there just wasn’t enough damage done to my intestines to show up anywhere. But on the other hand, I have osteopenia—a thinning of the bones. And though my cholesterol numbers and blood pressure seem fine (bp 104/78 at my last doctor visit), my heart has an ejection fraction (EF) of 55%, which is borderline low—indicating some kind of previous damage.

When I questioned the doctor about the damage done to my heart, he suggested that it may be a result of myocarditis or cardiomyopathy, yet he sees my EF as a good sign because it may well be on its way up, as opposed to a couple months ago when I was at my sickest. He also suggested that with continued exercise and a gluten-free diet, my EF should rise to normal again, though it may take some time.

Was my barely-noticeable celiac so bad that it could do this kind of damage to my heart?

It is clear that whatever is making me ill is not finished— my immune system seems greatly compromised. I no sooner feel better then I feel sick again! The good news: last week was the longest stretch of good days I have had in three months. The bad news: what if it is not celiac at all? What if we are missing the mark and all this time is going by and I am getting worse? My instinct says we are on the right track with the celiac, but my instinct also tells me that we don’t have enough of the pieces to finish the puzzle.

Something— whether it is celiac-related or not— is taxing my body to no end. My bones, my heart, my kidneys… So many times I have been discouraged because it seems like I can’t work on the puzzle because I can’t see the whole picture. I often feel like I won’t ever completely heal until all the puzzle pieces are there and I can see the picture.  And then I found this quote yesterday by Tyler Fick, a beautiful young woman who lost her battle with Cystic Fibrosis at the age of 22:

“Do not accept failure in your life. When life gets hard, get hard on life. Never feel sorry for yourself” (http://www.tylerfick.org/).

Okay life, watch out! I may be down, but I’m not out for the count yet! Let's keep working on this puzzle so that I can begin to heal completely.