Post
by SaltLakeJan » Tue May 19, 2009 12:48 am
SWS wrote:
Jan, an interesting article that encapsulates many of your health issues under one umbrella of interrelated autonomic cause(s) and effect(s):
CompSAS/CSDB may arguably fall under that same general "autonomic dysregulation" umbrella according to some researchers. So far autonomic neuropathy, for instance, is viewed by researchers as having a possible CompSAS/CSDB link. You would seem to be a candidate.[/quote]
I have included very little of my personal health history, I didn't believe it related to resolving my Sleep Apnea puzzle. After reading the articles on dysregulation, that the syndromes are caused by many different things, viral illnesses, fatigue, head trauma, Diarrhea, IBS., some inherit the tendency to develop the Dysautonomia syndromes. And whatever the symptoms, all these syndromes are real, honest-to-goodness physiological (as opposed to psychologic) disorders. Also that family doctors are likely to refer these patients to a specialist. With time, the symptoms either go away, or abate to the point the person can live nearly a normal life.
Perhaps you would know from other research studies if a person with a health history similar to mine, might be connected to "autonomic dysregulation?" I saw my internists for some of the conditions, but my health insurance permits direct appointments with specialists & if I had an idea what I had, I went to a specialist.
I had Glomerulonephritis as a six-year-old child, I don't remember much of anything about that, or the skull fracture when I was twelve. I do recall heartburn (acid reflux, which has been with me most of my life) However, My repetitive health problems began when DH & I apparently drank contanimated water at a resort; we were both diagnosed Hepatitis A. We were both fatigued and not well for 2 1/2 years. It was a hard period. After that I primarily had upper respiratory conditions; laryngitis for 18 months, (could not speak above a whisper) Several bouts of pneumonia, which were frightening. Frequent bronchitis. Repeated sinus infections/or irritated sinuses are still with me. I never had a repeat of laryngitis after this period.
Anaphylatic Shock from a bee sting, para medics gave me an IV & I carried an Epi pen for years. then 2-3 years of Cystitis. next Colitis, or IBS, I The Colitis and IBS were separate, but both painful and life altering. . Diverticulitis, several events of H. pylori, which the Dr said was linked to Chronic Gastritis (Gerd). I have been anemic off & on since I was a teen, last time was 2006-8 . The Cystitis, Colitis, IBS and H pylori ,have never bothered me again.
My Gastro Doctor has been with me for years, the next thing he diagnosed was Esophgeal Ring and Esophgeal Spasms. I have choked frequently and had three emergency Heimlick Maneuvers. They were in a sequence, since then I chew very carefully.
By the time I reached 40, my internist was treating me for High Blood Pressure and High Cholesterol. My first total Cholesterol value was 519. With diet, prescriptions for both and on-going exercise, I brought both under good control. At a recent doctor visit, my BP was 122/55, Cholesterol 137, with Trig. of 72. Blood sugar of 97. High Blood Pressure and High Cholesterol are family conditions. I also had three head injuries - concussions.
Later, I was diagnosed with Fibromyalgia, the muscle pains, on-going body aches, and all the other symptoms made my life difficult. (Chronic Fatigue - maybe, maybe not).
About a year later, I had a small heel spur removed, it didn't heal, a culture revealed Pseudomonas infection which quickly turned into Osteolymetis in my heel. A Central Venous Catheter was placed in my left arm. I had seven infusions per day of what my Dr. called "kill or cure" antiobiotics (Gentamiicin, Amikacin, Tobramcyn, etc. etc.) It took six months of infusing the antiobiotic seven times a day, to eliminate the Osteolymetis, and Pseudomonas. The treatment was almost as bad as the condition. The cather had to be changed from left arm to Centrasil Venous Cather despite my Infectious Disease Dr.'s concern of risks heart infection. Along with all complications my WBC count went to 1.2. Antiobiotics had to be stopped until WBC count raised to 5. I had several heel surgeries to scrape the bone. I had a team of Doctors treating me. In check-ups a year later, I was told that none of them expected me to live.
This was the most traumatic of all my illnesses. And after denying ever having depression, I think what I labeled discouraged and worry, could have been depression. I was seriously ill during the entire experience. When my WBC count was 1.2, I recall drifting in and out of consciousness. My veins did not accept the infusions of the antiobiotics well, each took an hour and a half. It took approximately 10 hours each day to have the antiobiotic drip into my veins. My skin became very dry, and fungus developed behind my ears & in the creases in my fingers. My lips turned bright red & the roof of my mouth was raw. In order to avoid diarrhea, which was a natural consequence of the antiobiotics, I ate nothing but white rice for the last four months. A mouthful of anyother food would start diarrhea, which would bring critical consequences & the doctor said I would have to stop the antiobiotic.
I found out I had diabetes and sleep apnea, I have read of the link between them. Do you believe they have a link to my previous conditions?
In early 2002, I had a series of infections, that resisted treatment. The Infectious Disease Dr. sent me to a Dr in the Division of Clinical Immunology at the U of U Medicial School. He identified I had no risk factors for HIV, but by laboratory history, had a low IgM. "She has had recurrent pneumonia, two or more recent episodes. Since isolated IgM deficiency is relatively rare, I am wondering whether she might have some associated, either IgG subclass deficiency or some other problem leading to the pneumonas. Today we are going to do an immunofixation electrophoresis to look for monoclonal protein, which will also repeat her IgG, IgM & IgA. We are going to get IgG subclasses. To check for IgM responsiveness we are going to measure an isohemagglutinin tier against her A & B group antigens. We are going to check a T-cell short profile to be sure there is not an associated T-cell abnormality. He said if there is IgM abnormality, we are not going to be able to treat the IgM deficiency since gammaglobulin has very low levels of immunoglobulin M in it and the half-life is short. If the pneumonias continue to be a problem, I might strongly consider using trimethoprim sulfa on a prophylactic basis.
He later sent a letter to my Doctor. Labs include a normal CBC and differential, ESR 10, normal SPEP and IFE, IgG-1070 (normal) IgA - 256, IgM- only 31 (normal 60-263) but an isohemagglutinin titer to B substances of 1:32, which is normal. Diptheria antibody is low, tetanus and pneumococcal antibodies are good. CD4 and CD8 are normal, but CD4:8 is low because of increased CD8%. Unfortunately, there is nothing we can do about a low IgM. Let me know if additional infectious appear.
When I re-read this accumulation of conditions/syndromes it seems too much for one person to have and keep from disolving into a hopeless morass
of self-pity. One of the main reasons I have survived is my DH. He has been a constant support & tells me, "Don't worry about this, we'll get through this together." Many of my doctors have been personal friends, and they have made similar comments, "there is nothing you have done to cause this" No doctor has ever told me "it's all in your mind." A few of my closest friends know of my medical history, but I do not make a habit of talking about any illness to anyone other than DH. or the doctor who is treating me.
SWS, I read in the article re: Dysautonomia that many years ago exercise was restricted. They have now discovered that maintaining a daily level of physical activity is the most important thing people with these syndromes can do. Daily levels of moderate activity helps to stablize the autonomic nervous sysem, and make "relapses of syptoms more rare and shorter duration. Physical activity may even hasten the day when symptoms go away on their own. Perhaps forms of exercise that I have had to force myself to do, when fatigued, has been one of the main factors in becoming healthier now that I am eligible for Medicare.
Many of the diseases/syndromes have never repeated, but through changing some health habits, & having a body/mind awareness, I have been able to stop repeat performances of some conditions. Daily nasal irrigation has prevented sinus infections. Because I changed eating habits, I keep an AIC of 6, and & reduced my cholerestrol. Dr Krakow says you have to have the capacity to engage in self-generated restructuring to overcome many of your problem areas.
However, the article by Dr Krakow titled "Intelligency levels in Insomnia Patients" has been very revealing to me. He wrote about the Thoughts, Feelings and Images system. As the illnesses accumulated, I realize I shut my feelings down regarding any kind of sickness. I didn't let them really happen to me emotionally. It is hard to explain, because DH & I see that I get good medical care when a situation arises, I don't neglect my health. I exercise and stay with my Diabetic diet. I take my prescriptions on a regular basis. I keep my feelings for our children and DH at high priority, I feel a closeness to my friends. Children in trouble, like Larissa, touch me deeply.
I was going to write, I haven't closed off my ability to Imagine or picture something that is appealing to me. I picture myself as a healthy person, which isn't a realistic image - but it is a ideal image. And one I strive for in my health habits. To achieve the image of going to bed & sleeping soundly is something I am working toward. We took a couple of days vacation, played golf during the day & I slept better & deeper than I usually do.
I do not like talking about illness, but I have the feeling this is the appropiate time to acknowledge I have been ill, frequently in my life and I have been in denial about it. I believe the article about dysautonomia began a thought process where I can acknowledge I have felt discouraged many times to have one condition follow another, then another, etc. Possibly, I have felt depressed, and shut that off too. Who knows? Jan
Last edited by
SaltLakeJan on Tue May 19, 2009 3:10 am, edited 1 time in total.
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