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…

Week 10 Recap: Gluten Reactions?

People have warned me about reactions to gluten once you have been g-free for any length of time. I have been told that each accidental exposure seems to result in a different or worse reaction than before. If what I experienced last week was a result of an accidental exposure, I think I ran the gamut of every sick feeling I’ve ever had -- and all in less than five days.

The week started out great, well into the 90th-percentile for me. I continued my “physical therapy” with two 30-minute treadmill walks, upped my Pilates time to 30 minutes, and upped my weight-bearing exercises to 15 minutes. My plan was to do continue with a six-day exercise program.

I also decided that I didn’t want to continue using clonazepam to help me sleep anymore. I have never liked the idea of taking drugs that do anything to my brain, and I don't like the idea of having to be “weaned” off of medications, especially ones that might require additional medications to counter the side effects of weaning. Well, the idea was a good one but I ended up taking lorazepam instead (Ativan). It was a tiny dose and I figured it would be a good way to slow down. It worked— I slept through the entire night for the first time I can remember in a long time!

But by Tuesday I started having a lot of what I call “subclavian” pain (just because it is in the general area of the subclavian vein --below my shoulder). It was so pronounced I gave it a 5.5 on the pain scale: moderate pain. It was not the first time I have experienced pain or congestion in that same area, but it seemed pretty strong this time and the pain radiated from the left subclavian area toward my left armpit as well. It lasted off and on all day and I ended up taking lorazepam to help me sleep again.

By Wednesday, I wasn’t feeling very good. I was feeling flu-like and couldn’t seem to keep my heart rate down during my treadmill walks. At the same time I developed a migraine headache on the right side of my head that steadily worsened throughout the day. By bedtime I was feeling weak and shaky and my insides were “trembling” again. I was so uncomfortable I resorted to lorazepam again to help me sleep because it had worked so well the previous two nights. It didn’t occur to me that the lorazepam might contain gluten.

The next day I continued to have trouble keeping my heart rate down during my treadmill walk and ended up reducing the speed and held on to the rails when I felt too winded. I also continued to battle the right-sided migraine as well as left chest pain that radiated upward into that left shoulder/subclavian area. The only good news was that my headache went away when I did my treadmill walks and suspected it was due to the increase in oxygen in my body. I determined not to take any more medications to help me sleep, and took Advil to dull the headache, instead.

As you can imagine, I didn’t sleep that night, and had to put up with internal muscle trembling which seemed to start in my esophagus at bedtime and worked its way all the way through to my intestines by morning. At least the headache went away! That Friday was the day I noticed the involuntary gasps which have happened several times over the past week or two, sometimes during the day, mostly at night, and for no apparent reason. The kind of involuntary gasps you experience while crying. Sometimes just a single one, sometimes 2 or 3 in quick succession; sometimes in the day time, but mostly at night. Chalked it up to just another one of those things, but wondered if it wasn’t somehow connected to everything else I was experiencing that week!!

Throughout most of Friday I was feeling very weak. Once again, I had a hard time keeping my heart rate down during the treadmill walk, sometimes exceeding 95% of my heart rate by several beats. I didn’t feel hungry, but forced myself to eat and ended up with a bad case of reflux all afternoon in spite of the twice daily omeprazole (Prilosec). It felt like the reflux was pressing against my lungs and chest, making my chest feet very full.

To ease the reflux and the bloating I was feeling, I took Mylanta twice that evening, but it didn’t do much good. I hardly slept again that night, and I felt intestinal trembling all night long, clear into dawn again—it was like I had a motor running that I couldn’t turn off.  (If you ever want to know how this trembling feels, stand in the shower and let the spray beat down on your chest.  That is how it feels, but from the inside.)

I spent most of Saturday morning feeling “weird and weak” like I either had low blood-sugar or low blood-pressure. My stomach felt hungry, but my brain didn’t. I weighed myself for the first time in I-don’t-know-how-many months (my only weight came from doctors' offices) and was at 108 lbs. That is probably the lowest I have been in 5 years, since the DH (dermatitis herpetiformis) first showed up. Though 108 is actually a good weight for me (between 105 and 110 is generally when I feel my best-- I am a small person), I am not trying to lose weight. If I was trying to lose weight and felt good, I wouldn’t care, but I don’t feel good, so I’m not sure that it’s such a good thing.

It took another night before all these weird symptoms even began to subside. I decided to skip the sixth day with Pilates and weight training and even came close to giving up the treadmill for that day, but somehow I managed to get it done, and that made me happy. My exercise totals for the week: 18.85 miles on the treadmill, 130 minutes with Pilates and 60 minutes in weight-training.

Overall, it was a rough week and I don’t want a repeat of this week any time soon— in fact, never again would be nice.

I believe I was having a reaction to gluten, though I do not know the source for sure. I know that I am very strict with my diet, and so I suspect it may be the lorazepam which was prescribed for me during one ER visit to help me get over the “hurdles.” Regardless, I won’t be taking it again!

Week 9 Recap: Weird Things

Week 9 was actually a good week—I didn’t feel completely healed by any means, but definitely on my way. Every day felt somewhere in the 90% range for me. What could make it better? More sleep, more energy, and more stamina—I think they are all related, aren’t they?

Some Weird things I experienced this past week:

• Random hives inside my elbows and knees that seemed to disappear as quickly as they appeared, and often only on the left side (there is that left side again!!).  
• Feeling weak, fluttery, and “weird” come about 8:30 or 9 in the evenings. I suspect it may have something to do with low blood sugar because that is the longest time of day I go without eating (don’t eat after dinner anymore). I ended up taking clonazepam every night that week when I went to bed to help me get past these odd, fluttery sensations. 
• I usually feel fine in motion, but when I have to stand still for any length of time (whether in the check-out line at the store, or cooking at the stove), I begin to feel queasy, light-headed, and like I’d really like to sit down. Maybe it is a blood pressure thing? I don’t know.

And yet another really weird thing that happened this past week happened on Monday afternoon. I experienced some sudden, stabbing pain in left shoulder (subclavian) area which made me a little nauseous and sweaty for a few seconds. I checked my food/symptom journal and found it was the first time I have felt pain or congestion in that area in about two weeks. It had been so long, I had almost forgotten about it!! That oh-so-common left shoulder/subclavian pain and congestion had disappeared completely during the time I was off of ergocalciferol (Vitamin D) and all forms of Vitamin D, about 10 days. In fact, now that I think of it, that is the only time it disappeared.—but I’m not saying they’re related. Yet, why did it go away, and why did it return so suddenly (the day after I restarted the ergocalciferol)?

Could the left shoulder/subclavian pain have anything to do with ordinary Vitamin D? Even before the ergocalciferol prescription, I was still taking Vitamin D3, 1000 IUs/day and still feeling that congestion. Maybe for some odd reason my body does not react well to any Vitamin D.  Either way, it is turning more into pain than congestion, these days.

Once I restarted the ergocalciferol, I didn’t notice any other adverse affects from the 50,000 IUs of Vitamin D like I had previously, so besides the pain in the left subclavian area, I suppose that is good news. If it bothers me, my doctor has instructed to reduce the dose to once a week, rather than twice a week. Let’s hope the left shoulder/subclavian congestion and pain doesn’t have anything to do with it.  On the other hand, if there is a link then I should be able to avoid that pain by stopping the D vitamins-- just have to get some more sunshine, I guess. 

Maybe I should invest in a tanning bed.  :)

I didn’t experience so much back pain this week like I did with the previous week, but I did wake up with head and neck pain (always the left side!) on five different mornings which is something I’d really like to take care of, but don’t know how—it doesn’t seem to be related to my pillow because I have also experienced it during the middle of the day, far from my pillow.

I continued my “physical therapy” all throughout the week: two 30-minute treadmill walks a day, increasing in mileage by small degrees every day. The photo here shows the exact model treadmill that I own, and it has probably saved my life more than once! But this week I still experienced that left shoulder/subclavian pain and congestion through at least one of the treadmill walks every day…. Regardless, I walked 18.39 miles this last week on that treadmill.

The other two parts of my “physical therapy” include strengthening my core muscles 20 minutes a day with Pilates (using a resistance band and the “wheel” as pictured here-- that's not me with the band), in addition to using the Pilates Power Gym for 10 minutes a day for weight-bearing exercises to strengthen my arms and legs.

This is the exact model of the Pilates Power Gym I purchased about 18 months ago when I knew I was slacking on exercise and wanted to get back into shape again. We used to keep it in front of the TV so that all of us could use it while watching TV.  It ended up being used mostly as an ottoman or footrest, so now it has been relegated to my room where I use it six days a week.

So Week 9 not only included 18.39 miles on the treadmill, but also 120 minutes with Pilates, and 90 minutes on the Pilates Power Gym. I’m not feeling any exercise highs or anything like that because it is hard work-- it is not fun.  For me, it is simply therapy. My goal is to get strong enough so that I can feel “normal” again— so that I can increase my strength and and gain some energy in the process. I hope it works!

Week 8 Recap: Nice Feelings

Though the week started off with some residual back pain, it wasn’t too bad a week. In fact, I found a name for one of the mysterious “symptoms” I’d been having off and on through most of my life: silent reflux (as explained in a previous post).

For four days I couldn’t figure out why I felt like reflux was going up into my neck and attaching itself to my voice box. I was also salivating more, and developed a post-nasal drip without any apparent reason. Someone in one of my celiac support groups mentioned that she had “silent reflux” and when I looked it up, there were all my symptoms!

Well, now that I understood what was bothering me, I tried to look back at what I had eaten during the past four days—because my diet was mostly a GERD diet anyway: no fatty/fried foods; no sugary foods; no chocolate; no caffeine; no acidic foods; no tight clothing; no laying down after eating, etc. The only thing I could find in my food journal (that’s right, I have learned to keep one) were about 3 or 4 Kettle chips (g-free, of course, and low-fat) every day during that time.

Obviously, my body wasn’t healed enough to handle those chips, yet! So I did the reasonable thing, and stopped eating the chips… I also learned that I should be taking the omegprazole (Prilosec), and so started that regimen up again during the middle of the week. Once I started the Prilosec, I have to say, my days began to improve: maybe it was coincidence, maybe not; maybe it was because I simply wasn't eating those chips-- even though they were in very small amounts.

Also during the week, I continued my exercise regimen of two 30-minute treadmill walks (six days a week); a 20-minute Pilates workout (five days a week); and 10 minutes of weight bearing exercises (using a Pilates machine, five days a week).

Each 30 minute treadmill walk started out with a 5-minute warm-up walk and ended with a 5-minute cool-down walk, and for those 20 minutes in between I tried to keep my heart rate as near my target heart rate (as suggested by my doctor) as possible. I started out the week walking 2.744 miles in a day, and ended the week walking 3.003 miles in a day. That is 17.35 miles total (of course, this does not count the daily run-around and errands throughout the day); 100 minutes of Pilates; and 50 minutes of weight-bearing exercises.  So I feel this week was very successful in strengthening my heart and my core muscles. The best part: almost no heart palpitations this week, and that is a great feeling!!

Also, this week marked the beginning of a new class which I must take or my financial aid will be revoked. I was supposed to take two classes this time, but because of my health, I postponed that double-up (my final two classes) until the next term. I have been lucky enough to keep my GPA high (3.98)—which may be as high as I can get it, thanks to one A- a few years ago. Amazing how one little A- can affect your GPA. Regardless, I will be graduating summa cum laude, and that is a nice feeling.

The only drawback to this week was that I had to resort to clonazepam almost every night to help me sleep through the bouts of silent reflux, or symptoms that feel like hypoglycemia. Yet, all in all, by the end of the week, my days were very good—and back in the 90% range, which is a very good feeling.

Week 7: G-Free Recap

The week didn’t start out terribly bad— I knew I was still recovering from a cold and each day I seemed a little better. I was still feeling some faint heart palpitations, particularly in the afternoons (must be when I’m getting tired or something), but at least the sneezing and coughing was going away. I took my newly prescribed Vitamin D (50,000 IUs) on Sunday, 3 days after the first dose.

I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?

Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.

I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.

My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.

I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!

I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction!  I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.

The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.

My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!

The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.

My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose?  Or still go three days and two days?