- CASE FILE
I've been struggling with undiagnosed fatigue and post-exertional insomnia for 33 years. Sometimes I also feel like I'm suffocating.
ABOUT THIS CASE FILE
What follows is my attempt to summarize most of my experience of the mysterious, undiagnosed and unsuccessfully treated illness I have endured for more than three decades. I will start in early childhood and proceed to the present.
I believe I experienced such common childhood diseases as colds, flus and earaches with normal frequency. The only unusual infection I may have had was a suspected pneumonia at about age 5, which my parents told me was treated with an injection of an anonymous steroidal drug. I am also told that I tended to sleep much more than normal as an infant, and that I had diarrhea for about a year.
I have been underweight throughout my life. I am the thinnest child of thin parents.
I was able to exercise almost normally throughout childhood and adolescence. I never needed to be excused from physical education classes. I avoided intensely aerobic sports such as fast running and basketball due to their tendency to cause lightheadedness, nausea or fainting (vasovagal syncope). (This problem began in elementary school following a bout of "stomach flu"). I favored sports with rest breaks such as tennis, but was never able to be competitive with healthy players of the same skill level. Occasionally I noticed that I held my breath while I played at peak intensity. Vasovagal reactions to surgical trauma, pain or strenuous exercise continue to occur.
I am not exactly sure when I developed trouble with hot baths and showers, but for at least 40 years they have also caused lightheadedness. If the bathroom is well-ventilated by leaving the door open and a fan running, hot showers (but not baths) have been tolerable. I have also tolerated summer temperatures without air conditioning and long periods without sitting. In general, I would rather be too warm than too cold.
In my late teens and early twenties I developed severe cystic acne that was treated with erythromycin, tetracycline and finally Accutane. Around the same time I began to have occasional heart palpitations. I also noticed that I felt sluggish for a few hours following a meal with a high sugar content. Acne has continued to the present, although not as severely.
In July of 1986 at the age of 23 I began to have continuous symptoms at rest and thereby became partially disabled. I was exercising heavily in the weeks leading up to onset, and had taken some time off to recover from a cold of normal duration and intensity. The sequence of arrival of my chronic symptoms is a little hard to remember at this point, but approximately it was as follows:
1. Exhaustion (to be distinguished from fatigue, which is actually sort of a good feeling) accompanied by a strange sense of dryness (or perhaps irritation) in my nasopharynx. The "center" of my exhaustion was (and still is) located in my chest.
2. Multiple small (3mm diameter) vesicles on my fingers, palms, toes and soles (which may have been the result of very high ~ 5g daily vitamin C intake). My PCP at the time aspirated a vesicle and tested the clear fluid contents expecting to find evidence of a blood infection, but nothing was found. The number and size of the vesicles soon decreased; occasionally today I still see a few about 1mm in diameter.
3. Visual disturbances (loss of some contrast and night vision, "bleeding" colors under strong light, and negative afterimages). The afterimages are more intense if I have a fever, which is rare. I am sometimes able to see my heartbeat in my peripheral vision. When I am supine following a 30-minute walk, the ceiling appears to move away from me.
4. A sense of lack of clarity or reality (similar to a dreamlike state).
5. A feeling of swelling and irritation in the lymph nodes directly beneath my ears and jaw. I sense a "connection" between those nodes and the exhaustion I feel in my chest. Those nodes also frequently feel worse after I eat, and are now nearly as hard as bone. Waves of lymph node discomfort typically occur when large pills occasionally become stuck (perhaps in my esophagus or cardiac sphincter) on their way to my stomach. At other random times I have chest pain that radiates into those same nodes. In January 2011 I induced this type of chest pain by drinking 68 F water quickly.
I was evaluated by infectious disease, allergy and endocrine specialists in 1986; all tests were normal.
In 1987 I had a "remission" that lasted 1 day. The remission occurred 2 days after a couple of plane flights. On that day, I had no fatigue and no visual disturbances, but did have a rather purging attack of diarrhea in the morning. And speaking of diarrhea, when I had an intestinal parasite test done as ordered by a doctor in 1994, it involved drinking a large quantity of salt (Fleet's phospho-soda) and water that was intended to wash my intestines (and any parasites) out completely. The next day, I felt much better. I decided to repeat the purge about a year later, but it had no effect.
In 1988 I took a homeopathic combination viral nosode developed by a Dr. Nelson called VIR (from New Vistas, 3401 Industrial Lane, Broomfield, Colorado, 80020 which may have later moved to 3936 Niagara, Denver, CO 80207, 303-333-9269). The bottle's label listed the following ingredients: Red Clover 3x; Euprasia 5x; Morgilinum, Diptherinum, influencinum, Grippe, Mononucleosis, Epstein Bar, Herpes (Zoster, Progentasic, Simplex), Polio Coxasake [sic], all in 30x, 60x, 200x. For one day it caused fever, flu-like symptoms and throbbing in my solar plexus. I felt very strong for about a week afterward, but then began to feel needle-pricking sensations all over (including my eyeballs) as well as burning in my esophagus. Those two symptoms gradually subsided and are no longer present. However, the throbbing in my solar plexus is frequently present.
In 1989 I noticed that my breathing became slightly labored if I consumed a significant quantity of alcohol or fat. My breathing was comfortable as long as I avoided those foods. My breathing during sleep was deep and heavy.
My illness was rather stable for 15 years, then began to worsen toward the latter half of 2001, at which time I noticed much more frequent palpitations—as often as every exhalation. Palpitations are also more frequent when I lie on my left side. I was told by a physician that the palpitations are a result of my low blood pressure, which has been as low as 68/30 at rest. At 50 bpm bradycardia is also present.
In March of 2002, I began to continuously feel that I am suffocating. It is not a feeling of obstruction or panic; it feels as if there is simply not enough oxygen in the air, or as if I were under water and need to come up for air, or as if I were hyperventilating. The feeling does not worsen immediately with effort and is in fact most intense at rest. The more intense it is, the shallower I breathe. Eating often makes it significantly worse, and the feeling is particularly intense when I awaken from a nap that was preceded by a meal. Sneezing sometimes makes it worse. Even a single Advil tablet makes it worse. Air hunger is the most distressing symptom I've ever experienced; in combination with my exhaustion, it is sometimes unbearable. For several weeks I noticed an improvement in my air hunger after ingesting the juice of 3 lemons per day, but that treatment is only briefly and occasionally effective. Hyperbaric oxygen was only briefly and mildly helpful.
Strangely, since onset of chronic symptoms in 1986, I have felt slightly better overall when I have a cold. I can say the same about the flu, provided there is no vomiting. Whether the relief is due to the fever or immune activation or both has not yet been determined. However, a trial of liothyronine in 1992 was not helpful.
Frequently my heart pounds when I awaken in the morning, and at various times throughout the day. I can sometimes hear my pulse swishing in my left ear at rest, and in my mouth after exercise when holding my breath in. Irritability and anxiety are nearly constant.
Sleep is utterly unrestorative. I typically feel worse when I awaken than the night before. Polysomnography shows numerous abnormalities. Since March 2002, the sensation in my shoulders and arms when I awaken in the morning is that I have not slept, but rather lifted weights all night. This year I also began to feel that I am shaking internally for a few seconds after awakening. My brother says that when I sleep, my breathing is shallow, smooth and regular. For many years of my illness, my breathing was somewhat freer during the day if I got less than 8 hours of sleep per night, but I no longer find that to be true. I am now completely dependent on drugs such as antihistamines for quality sleep; natural soporifics such as melatonin, valerian and theanine yield only side effects. When I hold my breath, pulse oximetry shows that my oxygen saturation slowly rises from a baseline of 95 to 99. This result would seem to be consistent with a doctor's finding in 1996 that my metabolism is almost completely anaerobic when I exercise.
I have almost no morning stiffness. Painful cramping of the posterior side of my rectum is an occasional occurrence made more likely by bowel movements close to bedtime. Cramping of muscles throughout my body has become more and more frequent. There is sometimes much twitching in random locations.
In February 2005, impedance cardiography showed that my cardiac output is low enough to be equivalent to severe cardiomyopathy. In February 2006 my cardiac output was measured at 3.34 L/min supine and 2.30 L/min standing. My supine output dropped to 2.8L/min in July 2006.
In the past few years I've experienced numbness for a few days or weeks in parts of both feet and one hand. Neuro testing (EMG) has been negative.
In May of 2011 a stomach biopsy tested strongly positive for enteroviral infection. Treatment with valacyclovir and Equilibrant resulted in no symptomatic improvement, but the biopsy was not repeated. I wish to note that I had no symptoms of gastritis prior to the homeopathic treatment described above, raising the disturbing possibility that I was actually infected by the treatment.
A diagnosis of Chronic Fatigue Syndrome, now called SEID, has been suggested. That diagnosis is inappropriate for the following reasons:
1) I have been remarkably free from allergy, infection and chemical sensitivity. I did have a strong seasonal allergy episode in 2016.
2) My natural killer cell number and function were not impaired when first tested. They did test low in 2007.
3) My exhaustion has been centered primarily in my chest, not my muscles or brain as reported by most CFS patients. Until 2005, I experienced no significant cognitive impairment, nor muscle pain, nor joint pain, nor fever, nor sore throat.
4) During most of my illness, exercise was almost as likely to be helpful as harmful to me. Exercise was most likely to be beneficial when the muscles involved had not been exercised for at least one month. Exercise continues to provide an antidepressant effect.
5) My prominent symptom of air hunger does not usually occur in CFS.
6) The onset of my illness was gradual, neither sudden nor obviously infectious.
7) My exhaustion is relatively constant, not relapsing and remitting. I have no post-exertional fatigue, only post-exertional insomnia which of course leads to fatigue. Mental exertion leads to sleep-onset insomnia; physical exertion leads to sleep maintenance insomnia. It would only be correct to say that I have postprandial malaise, not post-exertional malaise.
8) My cortisol level falls with exercise but responds normally under mental or emotional stress.
9) My brain SPECT scan is normal.
Pulmonary disease, neuromuscular disease, hypovolemic anemia, thyroid and adrenal deficiency, and various chemical toxicities have been ruled out. In addition to hyperoxaluria, lab abnormalities have included a very low reticulocyte count; abnormal arterial blood gases base excess and T&B cell subsets; mildly elevated Anti-DNA (double stranded) and anti-parietal cell antibodies; positive postprandial antinuclear antibodies (ANA); high postprandial plasma lactate and blood pyruvate; high blood alanine; low fasting insulin; high 1,25-dihydroxyvitamin D; elevated urinary serotonin and norepinephrine; low interleukin-2 and interferon gamma; very low interleukin-12; high urine arabinose; high urine 3-Hydroxyglutaric; and high urine 5-oxo-proline (a.k.a. pyroglutamic acid).