Week 17: Healing

The line between illness and healing has been a wide and blurry one for me. There has been no particular day that I can say “this is the day I began to heal.” Rather, it has been a process of careful decisions, conscientious effort, and my body’s unique timeframe. It is a process that I suspect will continue for some time, and may take many more weeks or longer. But I can say, that life is slowly returning to “normal.”

This past week was not a bad week. My sleep has actually improved (if only by minutes) and even though there were a few quirky things that occurred this week (see ODD THINGS), there was nothing to really worry me enough to consider mentioning to any health care personnel.

Early in the week I received a phone call from the gastroenterologist who performed my EGD, the stomach and small intestine biopsies, and the genetic screen for celiac disease. She told me that she had done the screen for the two genes that most commonly show celiac and that I had neither gene. She went on to tell me that even though celiac can be found on other genes, in her opinion the likelihood of that was extremely unlikely and rare. She stopped short of saying I did not have celiac, and in fact said it could still be a possibility, but she was feeling it may be gluten intolerance or even an allergy to wheat. Regardless, she recommended a follow-up with the internist who diagnosed the celiac and further recommended a visit with a dermatologist regarding the rash on my right forearm.

Not having the gene for celiac made me rethink all of my symptoms from the family history of digestive disorders, the onset of the rash five years ago, to the visits to the ER, the myocarditis, the osteopenia, the general symptoms of malnutrition and malaborption (inability to absorb nutrients which went on for years). What other illnesses or diseases could cause these types of symptoms? Why, after almost four months of going gluten-free, is my skin beginning to feel soft and supple again (after a lifetime of rough and bumpy skin)? Everything still seemed to point to celiac disease. Could a gluten intolerance have the same affect on the small intestinal villi?

I believe that I was at my sickest in mid-January of this year—about a month after going g-free, and about two-and-a-half months after radically changing my diet. Originally thinking I had GERD, I had stripped my diet of all dairy products, fatty and/or fried foods, sugar, citrus, and acidic foods. Six weeks into the GERD diet, I further eliminated all gluten. A month later, I was suffering from congestive heart failure, and an almost nonexistent immune system. Could a radical change in dietary habits cause this type of strain on my heart?  Is it normal to get sicker on a gluten-free diet before getting better?

Being a member of two different celiac disease support groups, I posed this same question to the members there and received a resounding YES! I was surprised by the number of people who experienced the same story, some of which had the exact same symptoms that I experienced. Coincidence? Maybe, but it is something to think about.

Also, still having issues with the Vitamin D (ergocalciferol) and its propensity to make me feel bloated and distended, I did some research and found that large doses of magnesium may be helpful until the distension passes (http://www.easy-immune-health.com/is-constipation-a-side-effect-of-vitamin-d-comments.html and www.ctds.info/magdiet.html), so I determined to ask the doctor about this during my follow-up appointment. Could I be slightly magnesium deficient? Toward the end of the week I resorted to the good ole’ fashioned milk of magnesia cure, which worked beautifully by the next morning.

My follow-up appointment with the internist went very well, and though he gave me the option of testing myself with small amounts of gluten, he stuck to his original diagnosis of celiac disease. There are just too many other factors that point to the disease (not discounting the possibility of a gluten intolerance), and the genetic tests are not the best diagnostic tool, which made sense to me.

He also told me that the Vitamin D capsule I’m taking is made from pig’s feet (the shell coating) and that I may be having difficulty digesting it, and that when I take the Vitamin D, I should cut it open and put it in applesauce. He also told me to take 600-800 mg Magnesium with it-- that high a dose because only about 10% is actually absorbed through OTC supplements.

ODD THINGS THIS WEEK:

• Random hives mostly on my fingers
• Inner trembling returned this week, though fairly mild.
• Pain under mandible off and on for a few days.
• While at dance performance, my right ear started aching. It was a generalized ache—one I at first mistook for the beginning of a headache. But it occurred later and was more distinctly in the right ear and not a headache. This has been happening every day since then. I hope it has nothing to do with the prosthesis. In the 21 years since the prosthesis was put in place, I have never had a problem with that ear.

My “physical therapy” continued to go very well this past week. All treadmill walks were perfectly normal and without stress. Totals for the week include 180 minutes of Pilates, 100 minutes of weight-bearing exercises, and 18.94 miles walked.

So even though the road between sickness and health has been bumpy beyond belief at times, and sometimes the road nearly imperceptible, the rocks and potholes are gradually thinning out, and I am beginning to see more smooth pavement than gravel.

It is a good feeling.

Week 16 Recap: Celiac or Gluten Intolerant?

Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!

On to last week’s recap in my adventures of going gluten free…

I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.

My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.

ODD THINGS THIS WEEK:

• Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
• Very slight fluttering in chest several different times this week
• One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
• Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.

My “physical therapy” went very well this past week even though I was not able to spend as much time with Pilates as I normally do. All my treadmill walks (two daily 30-minute walks, 6 days a week) went very well and I did not feel stressed or tired, or pain in any way… pretty much normal walks. Exercise totals for the week include 60 minutes of Pilates, 30 minutes of weight-bearing exercises, and 18.66 miles walked.

Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.

The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:

“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).

"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).

"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).

Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?

Week 15 Recap: Still Learning

Did you know that most Yoplait Lite yogurts contain aspartame? I had been so busy looking for “GLUTEN FREE” on the labels I failed to notice the aspartame listed in the ingredients. I don’t react every time to aspartame, but suspect I am more sensitive to it now, than in the past.

I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.

According to Gluten Free: The Celiac Site:

“Distilled vinegar (or white vinegar) has been listed as unsafe for people with celiac disease by the major organizations in the United States, but not by organizations in any other countries. This position changed in 2001. The Gluten Intolerance Group® and the Celiac Disease Foundation now state that all vinegar (except malt vinegar) is safe for people with celiac disease to consume. The American Dietetic Association has also stated…that distilled vinegar is gluten free.”

While according to Celiac.com and the Celiac Sprue Association (CSA):

“Distilled vinegar, however, is still on the CSAs ‘Low Gluten Items to Avoid List.’ The CSA still maintains that distilled vinegar and alcohol are ‘questionable,’ even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.”

I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?

The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!

Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.

ODD THINGS THIS WEEK:

• A little pain to the left of my sternum, off and on for a couple of days.
• Minor left subclavian pain, off and on all week.
• Tingling tongue, and upper lip, also!
• Strange hives on my knuckles during the week.
• Minor right subclavian pain for about three days.
• Weirds pangs under mandible again.
• Fluttery sensations in chest from time to time, particularly when not feeling well.

“Physical Therapy” totals for the week include 55 minutes of Pilates, 60 minutes of weight-bearing exercises, and 18.309 miles walked.

It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body!  I am still learning, but it is a good learning.  Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).

This second step of "rehabilitation" includes (CSA):

• Establishing an individual treatment plan
• Keeping a daily diary and recording all intake, amounts, and reactions
• Identifying and eliminating immune-response triggers
• Waiting 2-4 weeks before reintroducing new or questionable items.
• Expanding knowledge of CD/DH

 Just when I think I have reached Level Two, I end up back in Level One, still trying to figure it all out.  15 weeks and still learning...

Week 14 Recap: Finding "Normal"

This week I found out that our neighborhood has levels of PCE (the nasty carcinogen, tetrachloroethylene) higher than the state allows due to the laundromat leakage in 1989 about a block away, and have been wondering what this means for us... I've always believed this house was making us sick. I drink more water than anyone in this family and I drink it out of the tap. If PCE isn't in the water, is it in the ground? We’ve kept a vegetable garden for years! Our house was not one of the random houses tested, but it would be interesting to know.

Well, back to the recap:

I’m beginning to believe ergocalciferol (prescription dose Vitamin D) might be causing or contributing to what I call occasional “left subclavian” pain— pain that is in the general area below my left shoulder that tends to follow the left subclavian vein/artery. Sure enough, within a day of taking the ergocalciferol, this annoying and random pain was back. The good news is that it is not a long, sustained pain, but something that is just felt off and on throughout the day.

On Wednesday morning I went in for the EGD (esopagogastroduodenoscopy), in which the doctor sent a scope down my esophagus and took a look around. At 8:30 in the morning, I was prepped and ready to go. My blood pressure at the time was 106/72, and I was hooked up to a saline IV solution. By 9:15 I was wheeled into the procedure room full of monitors and equipment.

The nurse told me she was going to inject some medicine into my IV that would make me sleepy, and then told me to lay on my left side. I proceeded to lay on my left and the next thing I remember, I was waking up in a completely different room, the procedure already completed. I was informed that the doctor had tried to talk to me but apparently I was still out cold. It doesn’t take much to knock me out, it just takes a bit to keep me there! I don’t have complete memory of laying on my left side, so I am sure somebody must have been there to catch me. We joked later about the medical staff taking bets to see how long till the patient hits the table.  Somebody could have scored big on me!!

As it turns out, I have a “small hiatal hernia” and biopsies were taken from both the stomach and the duodenum (small intestine). I doubt anything will turn up regarding celiac disease since I have been gluten-free for three months (to the best of my knowledge and abilities).

After the procedure, I felt a bit woozy, but otherwise fine. I tried to sleep off the medication, but in a noisy house full of kids, telephones, and barking dogs, even a medicated sleep was impossible. Oh, how I would have loved to sleep! Once the medication finally did wear off I realized just how sore my throat, stomach, and small intestine actually were! To top it off, I had to deal with this achiness for about two more days, including the continual taste of blood in the back of my throat, and an unpleasant three-day flare-up of acid reflux.

The arrival of the weekend marked my next dose of ergocalciferol, and right on schedule, I felt the first definite heart palpitation I’d felt all week and a double palpitation later in the day. I was also experiencing left subclavian pain again off and on all day, just when the same pain earlier in the week had finally settled down. One other thing I noticed with the ergocalciferol is that for a day or two after taking it, my stomach will feel somewhat glutened and achey. I’ve been having doubts as to whether there isn’t some cross-contamination or small amount of gluten in the pill.

ODD THINGS DURING THE WEEK:

• A headache enough to make me nauseous-- not so much when I sat down but whenever I stood-- both sides of the head.
• Left arm felt slightly numb, and the front of my left shoulder a little achy, and left hand tingling-- on two separate days during the week.
• Tongue began tingling again, late in the week.
• In the wee hours of one morning I woke up enough to feel a heavy trembling in my neck.  I was too groggy to worry and noticed only that it was a very heavy trembling when compared any previous trembling I had felt.  I fell back asleep almost immediately.

Week 14's "physcial therapy" went well.  My treadmill walks seemed easier — no palpitations, congestion, or pain that I noticed.  I totaled 115 minutes with Pilates, 80 minutes with weight-bearing exercises, and walked 16.35 miles. 

In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.

Week 13 Recap: Healing

Last week was a pretty good week, with most of my days in the 90th percentile. I continued my twice-daily treadmill walks, along with daily sessions of Pilates and weight-bearing exercises. I also continued to wait on the University of Washington Medical Center for the records regarding my stapedectomy 21 years ago. We cannot go forward with the MRI without knowing what kind of prosthesis is in my right ear.

Why were we interested in an MRI? Probably because there were times when my neck was feeling congested and achy, as if my arteries or veins were backed up or something. I could often look in the mirror (particularly in the evenings) and see about three inches my left carotid artery bulging outward and throbbing. This was somewhat disconcerting to my husband, who finally called the internist on-call one night, who told him that I should be seen, but it isn’t really an emergency unless it interferes with my breathing…. which it wasn’t. Regardless, the swelling went down with sleep and rest, but I ended up back at the doctor’s the next evening.

My doctor ordered a CT scan and angiogram, as well as a carotid ultrasound. He mentioned that I had a strong carotid “up-stroke” which I took to be good news.

On Thursday morning I went to the hospital for the carotid ultrasound and the CT scan/angiogram. The ultrasound technician said he could see nothing out of the ordinary, and then I went on to do the CT scan with the dye injection—and my, what an interesting sensation that turned out to be. The feeling of hot dye coursing rapidly through my veins made me feel something like a potato being cooked in a microwave. It was a good thing I have lots of orifices to let the steam to escape.

The follow-up appointment with my doctor the next day was very interesting. Turns out I have at least three (probably congenital) defects:

• a gland in my left neck is shrunken or never grew (I think it was tonsular in nature)
• the left side of my chest is narrower than the right, which can sometimes cause problems with the left subclavian (which might explain the left subclavian pain I sometimes feel)
• and my right subclavian goes directly out of the aorta rather than the branch that comes out of the aorta (aberrant??).

I wondered out loud whether an infection in my left ear might explain the numbness under that ear, and the conversation went pretty much like this:

DOCTOR: “Wow, there’s a lot of wax in there… Want me to pull it out?”

ME: “I don’t know… Will it hurt?”

DOCTOR: “Probably…”

ME: “OK”

DOCTOR proceeds to remove a lot of earwax, which is indeed painful and I can feel myself pulling away from him. DOCTOR takes a look at ear canal again.

DOCTOR: “It does look really raw in there. That could be causing you some pain…. (pause)…. Wow, there’s still a lot of wax in there.”

I would have laughed but now my ear really hurt. “Are my tubes narrow?”

DOCTOR: “No.”

DOCTOR looks in my right hear (the one with the prosthesis) and says “Your right ear is fine. And by the way, your prosthesis is steel. Your records finally came in yesterday afternoon.”

I asked if that was MRI safe and he said (paraphrasing very much) “No, it’s not that it’s magnetic, but that it would cause it to vibrate, heating the metal up substantially, to the point where it could do considerable damage.”

So it’s no MRIs for me, ever. I should have a medical bracelet or something I suppose.  I ended up with a prescription for ear drops to soften the wax and fight any infection.

The visit with my doctor wasn’t all bad. He did tell me my arteries have no plaque or buildup or narrowing, so that is good news-- at least above my heart. But I do wonder about clots still. Thanks to the ear drops, I had to go around with about half my normal hearing capacity, and my hearing wasn’t very good to begin with.

I thought I had some other good news to report during the week, but it turned out to be bogus. I had thought I wasn’t bruising as severely as I had in the past with needle punctures, but by the end of the week it looked like I had been in an arm wrestle with an octopus and I was definitely at the disadvantage.

ODD THINGS DURING THE WEEK:

• Strange pain under mandible that hurt only when touched-- happened on a couple different days
• Was leaning forward to reach computer keyboard (leaning over my knee) and there were several thumps and pounding in my chest-- felt like at least a double palpitation, possibly a triple. Have found that leaning over my knee tends to do that for some reason, as if my chest is more sensitive to anything touching it. Maybe leaning on my knee blocks that subclavian artery for a second, or something.  It is a common position for me (leaning over my knee) so not sure why it happens now and not in the past.

Week 13's "physical therapy" totals added up to: 100 minutes Pilates; 75 minutes weight-bearing exercises; and walked 18.2 miles.  During the week, the treadmill walks gradually became easier with less pain and congestion, and almost no palpitations or movements within my chest that I could identify as such.

So this was a healing week.  I am hoping for many more in a row.

Week 12 Recap: What Recap?

Recap, recap, what is there to recap?  The new "Symptom of the Week"?

What can I say to spice things up a bit?  Basically, the congestion in my chest has shifted up to my neck. I was hoping to find some answers this week with the scheduled MRI, but it never happened. The most frequent “new symptom” was feeling like I had the mumps on the left side: numb below the ear and an achy jaw, every single day.

I did have some good news this past week: the heart palpitations have calmed down considerably; and the other good news (though not such good news for my kids) -- my kids all got sick, but I didn’t —which is the first time in a long time. This could be the result of one of two scenarios: (1) my immune system is finally kicking in, or (2) they all had the swine flu for which I was inoculated late last fall. I’m putting my money on the stronger immune system.

I found a little bit of a pattern in the heart palpitations recently. It seems as though when my oxygen supply either runs short or gets backed up by a kink in the neck (just my guess) I end up with a palpitation—such as when craning my neck to see something, or when talking for a long enough period of time that I need to take a breath.

During the week, I continued to wean myself off of clonazepam (again) by taking smaller and smaller doses. I found this helps avoid the inevitable headaches and sleepless night when I stop suddenly.

I also continued my physical therapy, comprised of two 30-minute treadmill walks, 20 minutes of Pilates, and 10 minutes of weight-bearing exercises, for six days a week, though I did miss one or two Pilates sessions. I kept my treadmill walks slow so as to determine whether I could do it without any heart palpitations, and the results were pretty good —I felt only one palpitation during a treadmill walk all week. The only thing I had to deal with was some upper chest constriction (as if my lungs refused to fully inflate) and some chronic neck congestion, almost entirely on the left side.

Last week's total physical therapy consisted of: 80 minutes of Pilates, 50 minutes of weight-bearing exercises, and walking 17.19 miles.

ODD EVENTS DURING THE WEEK:

• On one day, I ended up with a sudden bout of nausea and a weird feeling on the left side of my head. When I barely touched my head above my left ear, I felt pain sensations shoot out and upward.
• Another day I experienced some minor ringing in my left ear.
• Occasionally, my neck would throb in various areas, sometimes on the right side, but mostly on the left.
• My throat felt itchy and sore, and the right glands felt swollen.
• At least twice that week I awoke to a bloody taste in my mouth, and a lot of left-sided head and neck pain.
• One day I went to use my earbuds while on my treadmill but the left one kept shocking me for some reason, and created an earache in that ear.  Decided to opt out of using earbuds while on the treadmill.

On the day that I was scheduled for the head/neck MRI, the hospital ran a CT scan first to determine the nature of the prosthetic in my right ear (having had a stapedectomy almost 20 years ago). Turns out, there was some kind of metal in the prosthesis, and the MRI could not be done. Now what? We faxed the University of Washington Medical Center for my records so we could get a brand and model number of the prosthesis, but the MRI would have to be rescheduled. I left feeling very disappointed because I still had no answers.

That very same day, I had a consultation with a GI specialist, who seemed rather perturbed that my doctor did not confirm my celiac disease with a small intestine biopsy. She accused him of making a lot of generalizations without confirming the disease, but also admitted he could be correct in the diagnosis. As for herself, she refused to call it celiac until something shows up in a biopsy (of which she said celiac likely won't show up now, having been g-free for three months), or I have the gene for it (which they will apparently do at the same time). So bottom line, I go in for an esophagogastroduodenoscopy (EGD) on March 31.

The EGD will look at my esophagus, stomach, and duodenum (first part of the small intestine) with an endoscope, which can also be used to biopsy different areas if necessary.  According to SurgeryEncylopedia.com, it can be used:

"to diagnose early-stage cancer and can frequently help determine whether a growth is benign or malignant. The doctor can obtain biopsies of inflamed or suspicious tissue for examination in the laboratory by a pathologist or cytologist. Cell scrapings can also be taken by introducing a small brush through the endoscope; this technique is especially helpful in diagnosing cancer or an infection."

At the same time, this procedure can be used for:

• removal of polyps and other noncancerous (benign) tissue growths
• stretching narrowed areas (strictures) in the esophagus
• stopping bleeding from ulcers or blood vessels
• removing foreign objects that have been swallowed, such as coins, pins, buttons, small nails, and similar items

With the EGD, the GI-specialist can look for things like: 

• causes of abdominal pain
• achalasia, a defect in the muscular opening between the esophagus and the stomach
• Barrett's esophagus, a precancerous condition of the cells lining the esophagus
• Crohn's disease and inflammatory disease of the small intestine
• esophageal cancer
• gastroesophageal reflux disease (GERD), a condition caused by excess stomach acid
• hiatal hernia
• irritable bowel syndrome
• rectal bleeding
• stomach cancer
• stomach ulcers
• swallowing problems

The only thing that worries me at this point is that I still have random heart palpitations and that we don't know what is going on in my head and neck.  An EGD is contraindicated in patients who are at risk for heart complications or stroke (NIH), and in my mind, as long as we still don't know why I get random heart palpitations or whether I actually  had a TIA or am at risk for a stroke (where was that MRI when I needed it?), there is some risk involved with the EGD.  It may be a low risk, but without answers, to me it is still a risk.  Better safe, than sorry, right?  But I guess we won't know until the actual procedure.

Till next time...

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…