P90 Bootcamp = Regaining Life

Year 2, Month 4:

So for the past 49 days or so, I have been working out, six days a week, alternating strengthening workouts with cardiac workouts.

I have Tony Horton and the Power90 video series to thank for it.  But first, before you get any ideas that I am one of those "success stories" floating around on the internet with a rock solid body, let me tell you that I AM NOT!

I am not an athletic person by nature.  I am a couch potato, perfectly content to sit on the bed or the couch with my laptop where it belongs -- on my lap.  That is most of my life.

But, being that my life has taken some very bizarre twists and turns over the past three years, I decided that I needed to make getting healthy my priority again.

So here I am, halfway through the P90 Bootcamp workout series:

Yep, that's me!  Proof that someone my age can still get a good workout!  Of course, it doesn't take much to be a workout for me.  All I have to do at my age, is go outside and deadhead the roses for an hour or so and I'm pooped.  After all, I'm the one who gets ready for bed at 8:30, and am happy as a clam to just lay in bed and read a book until I am so sleepy I can't focus anymore.

Lately, however, my night-time book reading has centered around text books:  Nursing books, Anatomy & Physiology, etc.  Not the best entertainment, but a necessity.  I am, after all, a college student once again.

Once you see this video, you will notice that there is still quite a bit of -- shall-we-say, "jiggling" going on.  I wasn't doing the P90 workouts to lose weight.  I was doing them to get in shape.

Suffice it to say, I have decided it is time to start watching what I eat again, also.  Time to cut out the junk and focus on something better -- more whole foods, fruits and vegetables.

Step by step, I am regaining my life. 

Now if I could only find answers to the constant heart palpitations.  Stay tuned for more research!!

New Beginnings

Well, here I am.

It has been nearly 18 months since my last entry, and I am staring at a blank page before me, wondering what to write.  I seriously doubt there is anybody out there reading this, but just in case -- please accept my apologies for staying away so long.

How do I explain my absence and what has been going on in my life without getting too personal?  I don't know that I can, so I will just spill it here.... right now.  Get it over with, and move on.

To make a long story short, my marriage ended, I moved myself with five of my kids back to my home state of Washington to start a new life, and go back to school.... again.

As for my health, no one ever did find irrerutable proof of celiac disease, and so I have had to settle with a gluten intolerance.  In fact, there was never any explanation given for any of the strange symptoms that have beguiled me over the last several years.

However, I can say this much:  I feel healthier now than I have over the past few years since all of this began.  I still get the unexplained heart palpitations and every time I mention hormones to anyone in the medical profession, I get the "rolled eye" expression without the rolled eyes.  I have been told so many times by menopausal women that they experienced the same thing, and yet the medical community still continues to scoff at it.  Why?

Since moving away and starting anew, I have slacked on my committment to exercise, and that is something I need to pick up again -- it is something I need to do for myself.  It is something I very much want to pick up again and find the time much as I did before.  It was the first time in my life I had ever stayed with an exercise routine for any length of time -- 10 months, 6 days a week.  I did it because it was a priority for me, and it needs to become a priority again.

I am off of all prescription medications, and still eating gluten-free.  There have been a few slip-ups with gluten, but I will usually pay the price for it, hence the self-diagnosed gluten intolerance.  Gluten is tough on the body, and after having been away from it for so long, reintroducing it can cause problems with which I don't care to deal.  I've been down that road and don't want to go there again.

As for this blog, I would like to gradually change the focus from celiac disease to just living a healthier lifestyle -- not just physically, but also mentally.  I may even just start a new blog and leave this one up for those who are searching for answers, just like I was.  I am still searching for answers.  I just haven't found any.

And as if all this change in my life isn't enough, I just discovered today, that I had a number of comments awaiting my approval to be posted and I was never notified by Blogger that they existed!  I feel bad and hope to be on the ball from now on!!!

Stay tuned, don't give up on me, and we will see where this all leads.

Week 25 Recap: An Unremarkable Week

Week 25 was a very busy week, but I made sure I remembered to use the proper bioidentical hormone creams twice daily as I attempted to see if there would be any changes in the trembling I had been experiencing most notably during the night. I started with progesterone cream and would continue with this for a couple weeks and then stop for a week before starting estrogen cream.

Early in the week I noted that my heart doesn’t seem to like it when I lay down in certain positions, such as directly on my left side. It often feels as though it loses its pumping efficiency and I find myself changing positions so that I can breathe easier. I found that if I lay at an angle (not directly on either side, but leaning forward or back), breathing becomes more comfortable.

The trembling I had experienced over the past several weeks had died down somewhat during the first part of the week and so I thought maybe the progesterone cream was working, but the trembling reoccurred in the chest area about midweek, though it was relatively minor.

My exercise routine actually seemed to get easy enough for me to kick it up a notch and walk a bit faster at about 4 mph. This lasted for several days, but by the end of the week it felt like more of a challenge again. During one session on the Pilates Reformer I felt some mild heart fluttering and so took it easy during that session. That was the only time something like that happened during the week. Exercise totals included 90 minutes strength-training and 15.5 miles on the treadmill.

Overall, it was not a remarkable week and contained all the usual stresses of life.  In spite of the days I didn't feel like exercising or was too stressed, I continued to keep it up even if it was at a minimum.  I'm not ready to give up yet.  It ain't over!

Week 22 Recap: …And Two Steps Back

Week 22 started out with a scare. I was getting ready for the day, doing my Facemaster (which I have used for about 6 years now), when I suddenly started having multiple palpitations (a rather large flip-flop) to the point where my heart began to pound rapidly. It was rather frightening because for about 5-10 seconds my heart just could not get back on track. My pulse jumped to about 110. I didn't know what to make of it. I wasn't stressed, wasn't thinking about anything in particular, just watching TV while doing my face. I was completely relaxed, although after that little incident I have to admit I was pretty frightened.

I couldn’t remember the last time I felt like that. In the past I had experienced a sudden rapid and pounding heart beat, and had experienced the multiple palpitation/flip-flop feeling but couldn't remember when/if I had ever felt the two of them together. It was quite disconcerting because I thought I was over all of that!

After the ‘incident’ my left chest was aching, as well as my left arm. I was thinking it may be an anxiety reaction. I wasn’t under stress, but felt frustrated because I had been doing so much better, and now this – totally out of the blue, for no apparent reason. I couldn’t shake the anxiety and so ended up taking 1 mg lorazepam, which made me groggy for the rest of the day. Though I felt physically fine, I was emotionally let down. It depressed me because I felt like I went through an event that had no reason for happening. If I knew the cause, I could dismiss it and move on. Perhaps last week’s stomach upsets and chest fluttering led to this latest development?

I determined to ignore it the best I could. Just -- it is what it is-- it happened, I don't know what it is, get on with life.

After about two weeks of quitting Prilosec my stomach finally began to settle down, though I continued to experience the internal trembling that no doctors have been able to address so far. When it happens during the day it is like a major caffeine buzz, but at night it seems more pronounced and can be felt through the skin. I began to wonder if all this internal trembling is related to something with my nervous system that may also occasionally interfere with the electrical conduction of my heart.

I had a checkup with the internist this week and talked to him about the sudden flip-flop I had experienced out of the blue. He said if I had a mitral valve prolapse (MVP) it would have been spotted on the echocardiogram we did back in January, and that he didn’t think I had dysautonomia, but he wanted to recheck all of my thyroid levels—particularly because he noticed that my weight had gone up and then back down quite rapidly (in a few months time). He also mentioned that he was going to be talking with someone else about my case to help get some answers, which is always nice to know.

I asked him when I might see an improvement in the osteopenia and he said it could take up to 2 years to see a difference in bone density. It was a good visit – my blood pressure was 102/74 and my pulse was 84 – a little elevated for me but probably because I was nervous. I had about 5 tubes of blood drawn for the thyroid and iron blood tests.

The internal trembling continued throughout the week and at night it even felt like my eyelids were trembling. Another strange and new symptom began appearing this week: dizziness especially upon awakening and upon sitting up. In the meantime, I continued to take the clobetasol proprionate ointment as prescribed for the rashes on my arms.

By mid-week it was clear that this was

going to continue to be a very strange week!

I began to have stress days. For some weird reason I just couldn’t seem to control my levels of stress. My brain was telling me something was wrong or going go happen even though there was no physical indication or rationale for such an event. I felt like the Star Trek character Data when his emotion chip is implanted and it goes awry. Once it is deactivated he normalizes. It felt as though my stress ‘chip’ had gone awry and I didn’t know what to make of it. I had never felt that way before. I took a lorazepam and went to bed.

As I have learned since becoming seriously ill last October —if there is ever any type of new symptom I need to first look at what I’ve been doing differently or what drug was recently prescribed for me. In this case, the only thing new was the clobetasol proprionate ointment. I did a little Googling and found that it has been well established that low doses of topical clobetasol proprionate can cause adrenal suppression in some people. The adrenals are responsible for our ability to deal with stress! I immediately made the mental connection, though I was completely caught off-guard —it had never occurred to me that a topical ointment could produce this kind of reaction in me —but then again, over the past seven months my body had been reacting to everything!

One particular article I found came from the Journal of the Royal Society of Medicine entitled “Adrenal Suppression Following Low-dose Topical Clobetasol Proprionate” which said specifically:

“The use of topical steroids is associated with adverse systemic effects such as suppression of the hypothalamic-pituitary-adrenal (HPA) axis, and application of more than 50 g per week of clobetasol propionate cream has been shown to cause secondary adrenal failure” (Volume 80, July 1987).

The article described “4 patients who used clobetasol propionate cream over a prolonged period; 3 patients used less than 50 g per week (7.5, 25 and 30 g per week) and yet all developed secondary adrenal failure for up to 4 months after cessation of therapy” (Boldface added).

The conclusion was that “relatively small doses of clobetasol propionate cream may cause adverse systemic effects, with suppression of the HPA axis occurring more commonly than has previously been recognized.”

So what is the HPA axis and what happens when it is suppressed?

 According to Oregon State University’s Student Health Services:

 “The HPA axis can be thought of as the body's ‘stress sytem’. It controls the levels of cortisol (the ‘stress hormone’) and other important stress-related hormones. The HPA axis can also be thought of as the body's energy regulator, because it is also responsible for controlling virtually all of the hormones, nervous system activity and energy expenditure in the human body, as well as modulating the immune system. When the HPA axis becomes suppressed, your body will not be able to properly regulate your stress and energy levels, which can manifest in fatigue, suppressed immune system, depression, and anxiety. If you are experiencing such symptoms, you should see your health care provider for recommendations on the appropriate course of action.”

My first thoughts were: Could this really be the case? Just applying a small amount as prescribed? But I already knew my answer. My second thoughts were:  That's all I need to know.  My adrenals were already fatigued by my own diagnosis.  Stop taking it. Immediately.

The very next day, I woke up dizzy again. So much so, that as I sat up and leaned back to get a Kleenex off my nightstand, the room began spinning violently. I waited for it to subside and slowly stood up to use the bathroom but found myself leaning and kept tripping. As I went to get breakfast, I continued to feel very light-headed and off balance. I knew it was vertigo, and made an appointment to see my internist. He was out of town and so I was seen by a Nurse Practitioner, who subsequently diagnosed me with benign paroxysmal positional vertigo (BPPV) and recommended canalith repositioning exercises with a physical therapist (at this point, dollar signs began spinning around the room with everything else. I decided to wait until my internist got back into town and ask his advice.)

In the meantime, the NP prescribed meclizine (for the nausea that accompanied the dizziness) and a nasal spray: fluticasone proprionate. Great… more drugs…. I took the nasal spray and the meclizine the first day, but nothing more after that.

ODD THINGS DURING THE WEEK:

• Experienced some minor tightness/twinges of pain in upper left side of chest off and on early in the week.
• Experienced some mild left-subclavian pain again off and on
• Vertigo throughout the latter half of the week
• More pronounced internal trembling particularly in chest area

My exercise routines were disrupted this week with the vertigo. When I did use the treadmill my carotid pulse was much higher than normal-- for which there seemed to be no cause. For example, at 10 minutes into the walk my pulse is usually around 138. This week it was closer to 174—and hence the decision to not push anything.

When thinking back and wondering why I felt like I had been slipping backwards that week, I thought about my first heart events (for lack of a better work) last October. It seemed like they really slammed me down hard. A lot of things were going wrong before I was finally able to climb back up. And that is how I felt at this point. The strong cardiac flip-flop last Sunday followed by weird new symptoms: vertigo/dizziness and more weight loss without trying and without exercising most of the week. It was all so weird. Whether anything was connected to the other I had no way of knowing—especially after feeling so much better for a couple of months. It truly did feel like two steps backward.

Week 19 Recap: The Road Ahead

The week started out with more trembling and fluttering than I care to deal with, particularly because it worsened at night and often lasted till morning. If you’ve been following this blog, then you know that I found a possible connection between these bizarre symptoms and PPI (Prilosec) withdrawal (or any drug withdrawal, for that matter). Once I figured this out, I knew it would pass and determined not to take any more drugs for anything, if it can be helped.

I saw a dermatologist during the week with regard to the rash on my right wrist/forearm which I have had for almost six years now (possible dermatitis herpetiformis), as well as the rash near my left elbow which showed up about a year ago. She did not say what she thought of either rash, other than the one on my right wrist is clearly quite aged. She proceeded to take a biopsy of each, and I left her office with an unexpected six stitches, three in each arm. It will be interesting to see what she finds, if anything.

Toward the end of the week the night-time trembles began to die down in intensity, and other than being extremely busy sewing costumes for an upcoming talent show in which my dancing girls were participating, there were no new symptoms or return of any old symptoms. In spite of the exhaustion that comes from very little sleep and too much to do, it was a good week.

I tried to maintain my “physical therapy” even during this very busy week because it is the one thing I am not yet willing to trade-off for more time. I have to take care of my body, and the physical exercise is probably the biggest and best thing I can do right now. All of my treadmill walks went very well (walking 18.8 miles), and I feel my heart has finally reached a significant point of healing. Though I still get a heart palpitation about once a week or so, I have had none during any treadmill walks, nor have I had any chest pain of any kind.

I was not as successful in maintaining Pilates during the week (only 30 minutes), probably because it is usually the form of exercise I do last (in the evening) and all my evenings were absorbed in sewing and fitting costumes. I did, however, keep up the weight-bearing exercises on the Pilates Reformer (110 minutes)—which I know will continue to benefit my bones.

ODD THINGS THIS WEEK:

• Stomach ache again followed by same symptoms as usual-- kind of like a huge caffeine buzz-- nervousness and inner trembling.
• Discovered vertical rows of tiny bumps on my fingernails, most noticeable on my ring fingers. They are not the vertical ridges (which I also have), but tiny oblong bumps. Since they run the entire length of the nail I am guessing they have been there for a while. The dermatologist did not seem to know what they were and was unsuccessful at getting a good photograph of them.
• During one night, I felt strong muscle tremors in neck-- so much so that it woke me up. I remember making a mental note of it.

From where I stand now, the road ahead appears to be a good one.  I am not even so sure I want to "test" myself with gluten because I am doing so much better now, even though it has been a long time coming.  Yet I know the dreaded "test" must probably be done at some point in the future so I have a certain answer, one way or the other, as to what was/is making me sick, and so I know how to react in the future should I be "contaminated" in any way.

I can only say that prior to last year, I had never been sensitive to any foods, nor any medications whether it be over-the-counter or prescription.  I do know that I suffered a traumatic event when my husband suffered a massive heart attack, and though it was the hardest thing I had ever had to deal with from all aspects of my life up until then, I felt it was behind us.  And then there was the added stress of the "heart attack fallout" -- no money, no way to pay the bills, and watching my credit that I had worked so hard to build take a nosedive.  As if that wasn't enough, dealing with my husband and his erratic mood swings was apparently more than my body could take.  I felt I was on the verge of a major breakdown almost every week... turns out, my body did breakdown-- it just wasn't mental, it was physical.

All these events may have very well served as the catalyst, the trigger that set off the illness that slammed me down late last fall.  Interestingly, celiac can be triggered by just such events.  Though some people will not believe I have celiac, and though I have tried to dismiss it myself, I can't -- no matter how badly I want to -- and so life moves on.

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 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 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 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.