Wednesday, June 30, 2010

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 24 Recap: Celiac and Menopause?

Week 24 started out much better than the previous week, though I still wasn’t sleeping very well and continued to experience pronounced night-time internal trembling. At one point, the nocturnal trembling/tremors got to me and I did more Googling even though I hadn’t been able to find much about it with previous internet searches. This time was different.

This time I found a website called PowerSurge which is “an informative and supportive menopause community for women going through the transition of perimenopause to postmenopause.” I was very excited about this because I also knew that this was the exact time of life I was going through.  My mind began to make instant connections.

The more I read on this website the more I began to believe that perimenopause might be the cause of just about everything I had gone through for at least the past year! I continued to read about the “34 Signs of Menoapuse” which I will list here even though I do not have all of these symptoms and most women never will have all of them at once:
  1. Hot flashes, flushes, night sweats and/or cold flushes
  2. Bouts of rapid heartbeat (including palpitations, skipped heartbeats and irregular heartbeats)
  3. Irritability
  4. Mood swings, sudden tears
  5. Trouble sleeping
  6. Irregular periods (including phantom periods when you experience the symptoms that come with the onset of a period, but no period arrives. This is apparently common in perimenopause.)
  7. Loss of libido
  8. Vaginal dryness
  9. Crashing fatigue
  10. Anxiety, feeling ill at ease
  11. Feelings of dread, apprehension, and doom
  12. Difficulty concentrating, disorientation, and mental confusion
  13. Disturbing memory lapses
  14. Incontinence
  15. Itchy, crawly skin
  16. Aching, sore joints, muscles and tendons
  17. Increased tension in muscles
  18. Breast tenderness
  19. Headache change (increase or decrease
  20. Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
  21. Sudden bouts of bloat
  22. Depression
  23. Exacerbation of any existing conditions
  24. Increase in allergies
  25. Weight gain (particularly around waist and thighs)
  26. Hair loss or thinning
  27. Dizziness, light-headedness, episodes of loss of balance
  28. Changes in body odor
  29. Electric shock sensation under the skin and in the head
  30. Tingling in the extremities
  31. Gum problems, increase bleeding
  32. Burning tongue
  33. Osteoporosis (after several years)
  34. Brittle fingernails, which peel and break easily
Several more symptoms are listed in addition to these and this is what really grabbed my attention:

  • Dry skin / skin changes
  • Internal shaking / tremor-like feelings
  • Acne and other skin eruptions
  • Itching wildly and erratic rashes
  • Shoulder pain / joints / arthritis development or flare-up
  • “Heart pain” – a feeling of pain in the area of the heart
  • Acid reflux / heartburn / difficulty digesting certain foods
Though I have experienced many of the original 34 signs, I think most of my recent symptoms are in that last group of symptoms! I immediately referred to an entire section on Internal shaking / tremor-like feelings and was astonished to find page after page after page of thousands of women who were experiencing the exact same thing! In fact, this particular forum was so huge it had been broken down into three or four sub-groups!! Like me, most women were told by their medical providers that is was probably nerves and often offered anti-anxiety drugs.

 HELLO?  What is going on with the medical community these days? During the first three months of the onset of my ‘illness’, I was offered anti-anxiety drugs by at least three different medical providers without even looking further into any physical reason for why I was suddenly (keyword) having these symptoms.

 The Internal shaking/tremor forum comments ran well into the thousands and I could read every day for hours and never be able to keep up with them all as more are being posted every day. But the general consensus seems to be that no one knows why these tremors/tremblings happen. Some have them in place of hot flashes, and some have them at specific times of the month, but most believe it is related somehow to our endocrine system and the fluctuations in estrogen and progesterone.

This caused me to think two things: First, I was okay. If thousands of other women were experiencing this around the globe and were going through the same ‘change of life’ as myself, then it was probably harmless. Second, I remembered back to when these tremors started – almost a year ago when I stopped using estrogen and progesterone creams because I couldn’t afford them. Probably within a couple months, the tremors started in my neck. I remember this distinctly even though it didn’t happen very often -- at first I thought my carotid pulse was racing! But when I put my hand on my chest or when I felt my carotid artery, it was calm. I didn’t think much of it as it happened off and on throughout the end of summer and early fall. By late fall, things came crashing down and my journey here began.

I also made the connection between the strange, oblong vertical bumps on my fingernails and the endocrine system (I found it here). Again—the endocrine system—which in general, regulates our hormones and glands.

I figured it was time to get back on the estrogen and progesterone creams and see if there was any improvement with anything. More about the endocrine system can be found at the National Institute of Health.

I also figured that many of my symptoms were alleviated by going gluten-free.  I wondered if there was a connection between gluten intolerance and hormones or more specifically, peri- and- menopause.

Though Week 24 was a long and difficult one, culminating in a dance recital for my girls and additional schoolwork toward my college degree, I felt my health was once again on the rebound. I was able to clock in over three hours of strength training (105 minutes of Pilates and 100 minutes on the Reformer), and logged 17.3 miles on the treadmill—all with complete normalcy… and that is a good thing.

Week 23 Recap: Pressing the Re-Set Button

About 10 years ago I fell in love with an X-Box game my kids used to play called Need For Speed.  It was a racing game in which as you earned points you could buy better and faster cars and race against other drivers in beautiful locations around the world.  If I ever got stuck or couldn't maneuver, I could push the black re-set button and my car would be re-positioned and ready to go.  I have oftened wished for a re-set button in life.

 As the month of May ended and June began, it marked the seventh month since my journey to regain my health began. The question as to whether or not I actually have celiac disease remains debatable, though my personal inclination is to lean toward a gluten intolerance brought on by something else, possibly a virus. Swine flu was running rampant through the town last year, and in fact I believe one of my own children came down with it as well. Perhaps there was something in all the viruses floating around that attacked my system in a different way.

Week 23 started out with almost no sleep again, with my personal GPS (code for vertigo) still out of whack, frequently causing bouts of nausea and an upset stomach. And if that wasn’t enough, I was walking around with an internal ‘buzz’ for most of the week, like some kind of massive caffeine high (I haven't had any caffeine for 7 months).

With the onset of the vertigo last week I decided I’d had enough with all the drugs and vitamin supplements. I rebelled and quit taking the prescribed ergocalciferol, and all the vitamins with the exception of calcium/magnesium, iron, and 325 mg enteric-coated aspirin (prescribed by the internist when they thought I might have had a TIA).

I went to my internist on Tuesday to discuss the results of the thyroid blood draws the previous week and the vertigo. The blood tests were all within normal range, and though he had no explanation for the vertigo, he performed the canalith repositioning exercises on me (a good description of this procedure can be found here) and in the process taught me how to do it myself until the vertigo went away. He explained that he experienced it himself last summer and took care of it successfully.

I performed the repositioning exercises faithfully at least four times a day, and even though most of the reactions seemed delayed (about 20 seconds after changing positions) and sometimes the reactions hit with a bang, the vertigo gradually improved until it was completely gone within 48 hours after my first repositioning session.

The end of the week brought more pronounced internal (and nocturnal) trembling in the chest area. Sometimes it even seemed to migrate down my arms towards my hands. Was it because I eliminated the extra vitamin supplements from my diet? Was this yet another withdrawal reaction? I don’t know. Only time will tell.

My exercise routine was very successful throughout the week with just over 4 hours of strength training exercises including 150 minutes of Pilates and 100 minutes on the Reformer. Additionally I walked 19 miles on the treadmill at a brisk pace.

It was a good week, but one which was clouded with apprehension with the reminder that anything could go wrong with little warning.

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?


 “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.

Tuesday, June 29, 2010

Week 21 Recap: One Step Forward…

With normalcy gradually creeping back into my life, I started my last two classes for my bachelor’s degree in Business Administration. It would have been a lot easier if only I could get some decent hours of sleep!

The week started out less than ideal due to intermittent stomach aches which I chalked up to Prilosec withdrawal. I was perfectly aware that rebound reflux would occur with withdrawal, and it certainly did occur! The stomach aches lasted most of the week and I probably did not help by ingesting some questionable potato chips: Maui chips. Feeling so much better and thinking I probably did not have celiac after all, I became a little lax in checking ingredients. I sampled several Maui chips but within a day was not too happy about that little indiscretion.  It was a stupid mistake.

As if the stomach aches weren’t bad enough, I began breaking out in random hives toward the end of the week. For my ailing stomach I ended up taking Mylanta, but it didn’t seem to do much to alleviate the discomfort.

I continued my exercise routines, however, but almost every day there was some gastric-type fluttering in my upper chest along with a ‘foamy’ (for lack of better description) feeling in chest and esophagus—the kind that goes with an upset stomach.

By the end of the week, nausea was accompanying my stomach aches. Saturday marked my 11th day since I had stopped taking Prilosec completely. I knew the withdrawal stomach aches could last two weeks or so, but I wasn’t expecting it to be this bad! The last time my stomach felt this bad was when I was eating wheat bread—hence the wondering if I had been glutened by those Maui chips early in the week.

ODD THINGS THIS WEEK:
  • Several flutterings in chest during treadmill walks and weight-resistance exercises.
  • Heart flutter that caused me to cough (that hasn’t happened in a while!)

 My exercise totals included 80 minutes of strength-training (20 minutes Pilates, 60 minutes weight-bearing exerciseso on the reformer), and 11 miles on the treadmill.  I didn’t do as well this week due to the chronic stomach aches.

Even in spite of the setbacks, I still felt I was progressing because at least I knew this Prilosec withdrawal was to be expected and I knew in time it would pass. So I was still on the right path…



Week 20 Recap: Finding Ordinary

Week 20 started off well with Mother’s Day, which translated into a movie (Iron Man 2) and dinner with the whole family. Any time I get to watch Robert Downey, Jr. is a good day.  So seeing Robert Downey, Jr. and spending it with family was indeed a rare treat!!

Though I continued to have problems sleeping, I began feeling 100% on more days than not. Once the trembling subsided (presumed Prilosec withdrawal) I decided that I would stop taking it completely rather than gradually eliminating the dosage. I figured I’d rather suffer and get it over with now than continue this off-and-on thing all summer long.

On Wednesday I removed the biopsy stitches out of my arms myself. I did pretty well until the last stitch which was somewhat embedded into my skin and required a bit of digging. Started feeling queasy – don’t recommend it to others!! I’d much rather remove someone else’s stitches than my own!

No sooner had I finished pulling the stitches out, the dermatologist called. She said no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis. She said she asked the pathologist if IgA would show up and she was told that as long as the rash is still itchy it would still be present. So based on that information, she said she didn't think I had celiac.  But the rash has not been itchy. In fact, it hasn’t been itchy or active since I went gluten-free. When it does itch I believe it is because of the scabbing that is trying to take place.

Regardless, the dermatologist prescribed an ointment for me which she said would make the rash go away once and for all. The prescription was for Clobetasol Proprionate USP, 0.05% which I was supposed to apply at least twice a day.

Almost all of my exercise workouts during the week were uneventful: nothing going on out of the ordinary other than some minor fluttering late in the week which felt gastric-related. I also felt some brief left-sided chest pain off and on for a day or so, but nothing alarming.

My exercise totals for the week: 100 minutes strengthening exercises, including 20 minutes of Pilates and 80 minutes weight-bearing exercises; and 14 miles on the treadmill as well.

This week was nothing much to write about.... if fact, it was rather ordinary.  But do you know what?  That is a good thing!