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!
Showing posts with label Trembling. Show all posts
Showing posts with label Trembling. Show all posts
Wednesday, June 30, 2010
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:
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.
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:
- Hot flashes, flushes, night sweats and/or cold flushes
- Bouts of rapid heartbeat (including palpitations, skipped heartbeats and irregular heartbeats)
- Irritability
- Mood swings, sudden tears
- Trouble sleeping
- 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.)
- Loss of libido
- Vaginal dryness
- Crashing fatigue
- Anxiety, feeling ill at ease
- Feelings of dread, apprehension, and doom
- Difficulty concentrating, disorientation, and mental confusion
- Disturbing memory lapses
- Incontinence
- Itchy, crawly skin
- Aching, sore joints, muscles and tendons
- Increased tension in muscles
- Breast tenderness
- Headache change (increase or decrease
- Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
- Sudden bouts of bloat
- Depression
- Exacerbation of any existing conditions
- Increase in allergies
- Weight gain (particularly around waist and thighs)
- Hair loss or thinning
- Dizziness, light-headedness, episodes of loss of balance
- Changes in body odor
- Electric shock sensation under the skin and in the head
- Tingling in the extremities
- Gum problems, increase bleeding
- Burning tongue
- Osteoporosis (after several years)
- Brittle fingernails, which peel and break easily
- 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
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.
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.
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 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?
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.
ODD THINGS DURING THE WEEK:
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
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 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!
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!
Tuesday, May 11, 2010
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:
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.
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.
Thursday, May 6, 2010
Omeprazole (Prilosec) Withdrawal
Writing often helps me to sort out my thoughts. It has been that way for my entire life. If I want to figure something out, all I need to do is start writing. And true to form, while writing my weekly recap it suddenly occurred to me that the strange stomach aches and trembling I had been feeling for the past couple of weeks might be connected to my cutting back on Prilosec, as per doctor's orders.
I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day. The last time I experienced trembling of the same sort was when I stopped taking clonazepam. The trembling lasted about a couple weeks. Could it be that my body simply "withdraws" from chemicals in this bizarre way? Could a simple, over-the-counter drug have this kind of effect on the body? I had to check it out.
Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal. Why hadn't anyone warned me that it was possible and what I might expect?
According to many websites, the side effects for medications are also the side effects of withdrawal. The particular Prilosec I have been taking is omeprazole, delayed-release capsules. Prilosec is a proton-pump-inhibitor (PPI).
So what is a Proton Pump Inhibitor (PPI)? Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested. This acid is released through proton pumps which allow the chemical to pass into the stomach. Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.
Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).
According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion). The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."
Symptoms of PPI withdrawal may include:
Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added).
I am not the only one to believe PPIs are greatly over-prescribed. I have seen it in my friends, and I have seen it in my own family: Feeling a little indigestion? Let's put you on a PPI and dismiss it as that. As what?? My daughter was seen for an "nervous stomach" by a doctor while she was attending college. The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again. That was three years ago! She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not. When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal.
The internet abounds with forums and patient discussion groups regarding PPIs. Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:
Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").
I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame. Most patients (particularly American patients) want a quick fix. If they don't feel well, they go to the doctor and get something for it. In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix. There are many more factors and sides to this ideology, but that is not my purpose in writing today.
I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge. Somewhere between those two points lies a gap that needs to be addressed and filled. The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around? Just my two-cents...
Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552
I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day. The last time I experienced trembling of the same sort was when I stopped taking clonazepam. The trembling lasted about a couple weeks. Could it be that my body simply "withdraws" from chemicals in this bizarre way? Could a simple, over-the-counter drug have this kind of effect on the body? I had to check it out.
Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal. Why hadn't anyone warned me that it was possible and what I might expect?
According to many websites, the side effects for medications are also the side effects of withdrawal. The particular Prilosec I have been taking is omeprazole, delayed-release capsules. Prilosec is a proton-pump-inhibitor (PPI).
So what is a Proton Pump Inhibitor (PPI)? Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested. This acid is released through proton pumps which allow the chemical to pass into the stomach. Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.
Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).
According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion). The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."
Symptoms of PPI withdrawal may include:
- Rebound acid hypersecretion within two weeks of withdrawal
- Heartburn
- Acid reguritation
- Dyspepsia
Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added).
I am not the only one to believe PPIs are greatly over-prescribed. I have seen it in my friends, and I have seen it in my own family: Feeling a little indigestion? Let's put you on a PPI and dismiss it as that. As what?? My daughter was seen for an "nervous stomach" by a doctor while she was attending college. The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again. That was three years ago! She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not. When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal.
The internet abounds with forums and patient discussion groups regarding PPIs. Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:
- Taper off slowly to reduce stomach pain and hypersecretion of stomach acid
- Take Rolaids Antacid tablets as needed during withdrawal
- pH levels may be out of whack
- Food allergies and sensitivities may crop up
- May experience loss of appetite
- Trembling, shaking, "buzz"
- Troubles with Vitamin D and calcium defiencies to the extent of severe bone density problems
- Risk factor for Clostridium difficile -associated diarrhea
Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").
I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame. Most patients (particularly American patients) want a quick fix. If they don't feel well, they go to the doctor and get something for it. In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix. There are many more factors and sides to this ideology, but that is not my purpose in writing today.
I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge. Somewhere between those two points lies a gap that needs to be addressed and filled. The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around? Just my two-cents...
Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552
Monday, May 3, 2010
Week 18 Recap: Fine Tuning
Now that I am finally feeling like some healing is taking place in my body, it is time to start fine tuning and working on the last remaining “symptoms” that have either not been addressed or not completely gone away.
Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.
It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.
The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.
I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.
ODD THINGS THIS WEEK:
Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…
Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.
It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.
The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.
I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.
ODD THINGS THIS WEEK:
- Felt some right-ear pain a couple of times during one night but didn’t happen again all week. Wondering if it has anything to do with being shocked by the treadmill (ear buds) several days ago.
Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…
Wednesday, March 17, 2010
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…
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…
Monday, March 8, 2010
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!
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!
Tuesday, March 2, 2010
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:
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.
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.
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.
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!
Sunday, February 7, 2010
Hypoglycemia, Celiac, Adrenal Cortical Insufficiency, and Addison’s Disease
I happened to run across a website the other day, that mentioned the “inner trembling” I often feel, particularly late at night when all else is quiet, about 5 or 6 hours after my last meal. The website lists three different types of hypoglycemia (low blood sugar), but the one that caught my eye was regarding Type 2 (Adrenergic Type):
Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):
This led me to yet another idea: What is Addison’s Disease?
According to the Mayo Clinic:
Symptoms include:
What is the connection?Your adrenal glands have two parts: one that produces adrenaline-type hormones and one that produces corticosteroids such as glucocorticoids and mineralcorticoids. Cortisol is one of the glucocorticoids. According to the Mayo Clinic, glucocorticoids “influence your body's ability to convert food fuels into energy, play a role in your immune system's inflammatory response and help your body respond to stress” and the mineralcorticoids “maintain your body's balance of sodium and potassium and water to keep your blood pressure normal.”
What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.
What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”
According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”
What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).
Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).
Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.
“After ingestion of glucose the blood sugar rises for the first three hours followed by a hypoglycemic rebound at 4 to 6 hours. Symptoms associated with this type of response are tiredness 2 hours after eating, allergic responses or food intolerances, and shakiness before meals. When blood sugar falls rapidly, the early symptoms are those brought on by a compensating secretion of adrenalin; these include sweating, weakness, hunger, racing pulse and an ‘inner trembling’. This response can be due to adrenal cortical insufficiency or thyroid deficiency” (www.diagnose-me.com/cond/C18558.html).
Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):
“People with mild adrenal insufficiency may suffer from the same symptoms as those with Addison's Disease. Symptoms can include headaches, muscular aches and pains, joint pains, confusion, impaired memory, low motivation, and many others. Additionally, such people may suffer from an increased susceptibility to all kinds of infections including those caused by bacteria, viruses, parasites, yeast, and fungi” (www.mbschachter.com/adrenal.htm).
This led me to yet another idea: What is Addison’s Disease?
According to the Mayo Clinic:
“Addison's disease is a disorder that results when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well. Also called adrenal insufficiency or hypocortisolism."
This piqued my interest even more because cortisol is the hormone that regulates stress and helps you to sleep. Being a lifelong insomniac, it made me want to know more. Though Addison’s disease can occur at any age, it “is most common in people ages 30 to 50” (Mayo Clinic).
Symptoms include:
- Muscle weakness and fatigue
- Weight loss and decreased appetite
- Darkening of your skin (hyperpigmentation)
- Low blood pressure, even fainting
- Salt craving
- Low blood sugar (hypoglycemia)
- Nausea, diarrhea or vomiting
- Muscle or joint pains
- Irritability
- Depression
- Pain in your lower back, abdomen or legs
- Severe vomiting and diarrhea, leading to dehydration
- Low blood pressure
- Loss of consciousness
- High potassium (hyperkalemia) (thoughts of my 2nd ER visit when a medical worker popped her head into the treatment room after they did a UA and asked if I was taking a potassium supplement – I was not.)
Have I lost you yet?
Going from Hypoglycemia to Adrenal insufficiency to Addison’s disease?
What is the connection?
What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.
What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”
According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”
What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).
How do we find out one way or the other? There are several tests, including a blood test to measure your sodium, potassium, cortisol and ACTH, and also for antibodies associated with Addison’s disease (AD). Other tests include ACTH stimulation test, and insulin-induced hypoglycemia test (according to the Mayo Clinic, after an injection of insulin, your glucose level should fall and cortisol level should rise). Additionally, a CT scan will reveal any abnormalities on your adrenals.
Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).
Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.
Monday, January 25, 2010
Week 3: Recap
I would not be honest if I said that since I have been gluten-free, it has been smooth sailing. In fact, it has been quite the contrary. After the holidays, and since my last recap, I can honestly say that to the best of my knowledge, I have been 100% gluten-free. It was only until I made absolutely sure that everything I put in my mouth was g-free, that I could even begin to recover.
Early on, however, I continued to feel nauseous from time to time, feeling some chest congestion and tightness and daily headaches. I still did not know the results of my blood tests (tTG) or even what my cholesterol numbers were. Was this nausea and general malaise part of celiac disease?
At the same time, I was feeling the symptoms of another kidney infection caming on-- including the same back pain on the same left side. My skin was tingling and flushing again, and it seemed like some of the symptoms that sent me to the ER last October were returning. I couldn't shake the feeling that I was coming down with something. I was feeling flu-like again. Worse, I was beginning to doubt my original self-diagnosis of celiac disease. What else could it be?? I did more research, wondering just how much time would need to go by before I would feel the benefits of being g-free.
I found that:
So I determined to give it more time. After all, if celiac was present in my body all these years, it was certainly going to take some time to heal. Digging around on the internet a little more, I found a chart on Celiac.com in which 19 members posted how long it took for their symptoms began to subside. I have borrowed that chart and posted it here. Clearly it is not a scientific poll in the annals of the medical community but it represents that recovering from celiac complications does take time.
I finally called the clinic to find out the results of my blood tests. The tTG came back as less than 1.2, while the standard for having celiac is a minimum of 4. This was discouraging news indeed, because if I didn't have celiac, what did I have?? On the other hand, my cholesterol was at 162 and all numbers within that score were healthy.
Needless to say, this was getting very frustrating for me. Did this mean I had GERD after all? Then why is it that it didn't seem to matter what I ate, no matter how bland? It didn't matter what I ate or when I ate it-- if I ate it, I felt bad. All I knew was that it had to be food related.
Doubting my own diagnosis of CD, I resolved to go back to eating gluten-- after all, if the tTG was negative (normal), what did it matter? I must not have CD after all.
I ate a roll.
I figured that in order to rule out celiac disease, I would simply have to incorporate gluten into my diet again.
It was not a good time. It wasn't long before stomach hurt-- the same familiar "gluten stomach ache" I had experienced before. I was so frustrated. I couldn't do anything-- I couldn't clean the house, I couldn't cook, I couldn't take the kids to their appointments during the day, I couldn't do my homework, and it was all I could do to just get out of bed.
Week 3 was a difficult week, but not as difficult as the week to come...
Early on, however, I continued to feel nauseous from time to time, feeling some chest congestion and tightness and daily headaches. I still did not know the results of my blood tests (tTG) or even what my cholesterol numbers were. Was this nausea and general malaise part of celiac disease?
At the same time, I was feeling the symptoms of another kidney infection caming on-- including the same back pain on the same left side. My skin was tingling and flushing again, and it seemed like some of the symptoms that sent me to the ER last October were returning. I couldn't shake the feeling that I was coming down with something. I was feeling flu-like again. Worse, I was beginning to doubt my original self-diagnosis of celiac disease. What else could it be?? I did more research, wondering just how much time would need to go by before I would feel the benefits of being g-free.
I found that:
"Greater than 90% of those with celiac disease have improvement in symptoms within two weeks of starting a gluten-free diet (CeliacDisease.net)"
So I determined to give it more time. After all, if celiac was present in my body all these years, it was certainly going to take some time to heal. Digging around on the internet a little more, I found a chart on Celiac.com in which 19 members posted how long it took for their symptoms began to subside. I have borrowed that chart and posted it here. Clearly it is not a scientific poll in the annals of the medical community but it represents that recovering from celiac complications does take time.
Needless to say, this was getting very frustrating for me. Did this mean I had GERD after all? Then why is it that it didn't seem to matter what I ate, no matter how bland? It didn't matter what I ate or when I ate it-- if I ate it, I felt bad. All I knew was that it had to be food related.
Doubting my own diagnosis of CD, I resolved to go back to eating gluten-- after all, if the tTG was negative (normal), what did it matter? I must not have CD after all.
I ate a roll.
I figured that in order to rule out celiac disease, I would simply have to incorporate gluten into my diet again.
It was not a good time. It wasn't long before stomach hurt-- the same familiar "gluten stomach ache" I had experienced before. I was so frustrated. I couldn't do anything-- I couldn't clean the house, I couldn't cook, I couldn't take the kids to their appointments during the day, I couldn't do my homework, and it was all I could do to just get out of bed.
Week 3 was a difficult week, but not as difficult as the week to come...
Monday, January 4, 2010
Week 2: G-Free Recap
Getting through the holidays completely gluten-free while still trying to figure out how to live g-free has proven very difficult. Though I am eating g-free to the best of my abilities, somehow something is still creeping into my diet that is not allowing me to return to that wonderful feeling those first five days I went completely g-free. I seem to have a chronic stomach-ache, a general feeling of malaise, and extreme fatigue.
I am sure that my fatigue is due in part to the fact that I wake up every night for hours before finally falling asleep shortly before dawn, only to get up an hour or so later. Yet I remember when I first went g-free, I had an amazing energy level for which even a sleepless night seemed of little consequence-- I still felt energetic!
Over the New Year's Eve weekend, the only foods I ate that I did not know for certain contained gluten were Tostitos chips and Sour Cream & Onion chips-- but I did read the ingredients and couldn't find anything off-limits to a g-free diet. Additionally, I grabbed a few Hershey's Kisses from time to time (which are supposed to be g-free). Those are the only foods I've eaten differently than the first five days I went g-free and felt great.
So this third week I will eliminate chocolate, and of course have not eaten chips since New Year's and won't again without knowing for certain that they are g-free. On top of that, I hope to find some answers to a couple of blood draws: my cholesterol (which was done three weeks ago) and hopefully the results to the tTG test which would indicate the presence of celiac disease. If I don't receive any news by Wednesday I will go ahead and call the clinic.
In the meantime, I deal with what feels like chronic fatigue syndrome on a daily basis. I wonder if this is yet another aspect of CD? And why is it taking so long for me to recover from a gluten diet?
I am sure that my fatigue is due in part to the fact that I wake up every night for hours before finally falling asleep shortly before dawn, only to get up an hour or so later. Yet I remember when I first went g-free, I had an amazing energy level for which even a sleepless night seemed of little consequence-- I still felt energetic!
Over the New Year's Eve weekend, the only foods I ate that I did not know for certain contained gluten were Tostitos chips and Sour Cream & Onion chips-- but I did read the ingredients and couldn't find anything off-limits to a g-free diet. Additionally, I grabbed a few Hershey's Kisses from time to time (which are supposed to be g-free). Those are the only foods I've eaten differently than the first five days I went g-free and felt great.
So this third week I will eliminate chocolate, and of course have not eaten chips since New Year's and won't again without knowing for certain that they are g-free. On top of that, I hope to find some answers to a couple of blood draws: my cholesterol (which was done three weeks ago) and hopefully the results to the tTG test which would indicate the presence of celiac disease. If I don't receive any news by Wednesday I will go ahead and call the clinic.
In the meantime, I deal with what feels like chronic fatigue syndrome on a daily basis. I wonder if this is yet another aspect of CD? And why is it taking so long for me to recover from a gluten diet?
Wednesday, December 16, 2009
Muscle Spasms and Celiac Disease
I have always been a very pale, colorless person. It's why I wear so much makeup! Without my makeup, I am all one color, with the exception of my eye color.
According to the Celiac Sprue Association, pallor is one of the many symptoms of Celiac Disease. Here is a list of symptoms that they say the doctor will look for:
One of the symptoms that has been bothering me more and more are the muscle spasms at night. Prior to the worst of my illness (prior to going to the ER) I had been having weird spasms and tremors when I went to bed at night. Most of the time I felt it in my neck, especially while laying on my left side. For the past couple of months, the tremors/spasms have increased to the point of lasting longer than a minute or so. They will also tend to travel around, sometimes in my lower abdomen, sometimes in my chest, sometimes in my neck, regardless of my position while lying down.
Last night, I was almost asleep when I noticed the spasms again, but this time it lasted much longer and seemed to encompass my whole esophagus (chest area) and up and down my throat and neck. It just kept going and going. But I was so very sleepy, I don't remember if I fell asleep or how long it continued.
Tomorrow I have an appointment at the clinic, in which I will discuss my 'findings' over the past several days, and discuss these spasms and tremors.
Can a person with CD take vitamin supplements, or is it fruitless since the intestines are not absorbing nutrients anyway??
According to the Celiac Sprue Association, pallor is one of the many symptoms of Celiac Disease. Here is a list of symptoms that they say the doctor will look for:
- emaciation
- pallor (due to anemia)
- hypotension (low blood pressure)
- edema (due to low levels of protein, [albumin] in the blood)
- dermatitis herpetiformis (skin lesions)
- easy bruising (lack of vitamin K)
- bone or skin and mucosa membrane changes due to vitamin deficiencies
- protruding or distended abdomen (intestine dysmotility)
- loss of various sensations in extremities including vibration, position and light touch (vitamin deficiency)
- signs of severe vitamin/mineral deficiencies which may include:
-diminished deep tendon reflexes - muscle spasms (magnesium and/or calcium deficiency)
- bone tenderness and bone pain (due to osteomalacia)
One of the symptoms that has been bothering me more and more are the muscle spasms at night. Prior to the worst of my illness (prior to going to the ER) I had been having weird spasms and tremors when I went to bed at night. Most of the time I felt it in my neck, especially while laying on my left side. For the past couple of months, the tremors/spasms have increased to the point of lasting longer than a minute or so. They will also tend to travel around, sometimes in my lower abdomen, sometimes in my chest, sometimes in my neck, regardless of my position while lying down.
Last night, I was almost asleep when I noticed the spasms again, but this time it lasted much longer and seemed to encompass my whole esophagus (chest area) and up and down my throat and neck. It just kept going and going. But I was so very sleepy, I don't remember if I fell asleep or how long it continued.
Tomorrow I have an appointment at the clinic, in which I will discuss my 'findings' over the past several days, and discuss these spasms and tremors.
Can a person with CD take vitamin supplements, or is it fruitless since the intestines are not absorbing nutrients anyway??
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