Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Barbara - I mostly lurk here, but I wanted to put my two cents in about your daughter's health issues. I've had CFIDS/FM for 12 years, and have had similar (but not identical) problems: they've been linked to Orthostatic issues, which might have some role in the problems that your daughter is having. I have had two different problems, probably related, which presented in a similar way: passing out/falling down, losing consciousness for brief periods of time, having difficulties (with breathing, moving, speaking, temperature control, heart rate, etc.) immediately after. The labels the doctors have given me for these problems are Postural Orthostatic Hypotensive Syndrome (POTS) or Neurally Mediated Hypotension (NMH). I had the NMH diagnosis first, but the doctor I was seeing then hadn't even really heard of it, much less dealt with it. Later on, with a new doctor (and a new insurance company), I was able to undergo Tilt Table Testing, which is where the POTS diagnosis was finally given to me. Both NMH and POTS have treatments that can be successful for them (mine is semi-controlled, at best). To the best of my knowledge, they're most usually diagnosed through Tilt Table Testing - which, basically, is that they strap you to a table that is then tilted to stimulate a standing position & measure your heartrate, blood pressure, etc. *and for people who have CFIDS or either of those issues can be really, really difficult* - & /or wearing a Halter monitor. If your daughter hasn't had these tests, or if these conditions haven't been considered in her case, you might want to mention them to her doctors. They're autonomic dysfunctions related to CFIDS/ME, in much of the literature I've seen: You can check _http://www.ahummingbirdsguide.com/themesymptomlist.htm_ (http://www.ahummingbirdsguide.com/themesymptomlist.htm) ; there's a little bit more information there. There was also a major study, I think out of s Hopkins, about 4-6? years ago, about the correlation between CFIDS and NMH. I hope that this has been helpful, and, as an adult daughter with CFIDS, with a mother who does the majority of caring for me, can I just say: Thank You! For Caring, for doing what you can, for believing in her, especially when it seems like most everybody else doesn't. It's so wonderful that she has you. May both of you be as well as possible, and if you need more info, I'll see what I can find for you! Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Barbara, Has she ever seen a pulmonary dr before? Her symptoms of blacking out and losing muscle control, falling, then returning to normal sounds a lot like narcolepsy/cataplexy. This is what I was dxed with about 3 years ago. I also have fibromyalgia and CFS, but these were symptoms not associated with either of them. That's when my rheumatologist sent me to see a pulmonary dr. They also perform sleep studies for sleeping disorders. If she hasn't already tried this type of dr, it may not hurt. Hope that helps a bit! Much luck, Cheri > > Hello, > > I am the carer for my adult daughter who suffers from a mix of ill > health. > > She was diagnosed with CFS/ME about 20 years ago. About the same > time as the first me symptoms appeared, she also began to experience > blackouts. Without warning, she lost consciousness and fell to the > ground. This episode typically lasts for less than a minute. In > regaining consciousness, she is very thirsty and often her mouth and > hand muscles are in semi-paralysis for about 5 minutes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Barbara, ... " innumerable neurological consultants who insist that it must be a feature of her psychological condition. However, her long-term psychiatrist is insistent that this is not the case. " What Country do you live in? That has a bearing on how our illnesses " story " plays out..M.E. certainly reflects just by name more accurately what here is referred to as " fatigue " . (grrr) Unfortunately, my sister-in-law is a neuropsychologist.....who recently patronizingly " explained " to me that " of course CFIDS is genuine ALTHOUGH psychosomatic " ...this individual imparted her views well to my in-laws..need I say more...well Barbara I recently read the definition of psychosomatic and that term applies " only " to those patients manifesting symptoms WITHOUT medical explanation. So her psychiatrist supports her and your own post clearly identifies valid medical symptoms. I am sincerely trying to remain objective and not to become to caustic as to my view of the neurologists your daughter has so far experienced so will just say there must be a neurologist with up-to-date knowledge and medical acumen who could work with your daughter's psychiatrist to help your daughter experience a higher and safer quality of life. In other words if the medical community cannot identify what is considered a " valid " diagnosis an individual will be deemed psychosomatic. Please look at a couple other postings today about links to current awareness information re CFIDS in the U.S., the Centers for Disease Control is taking a firm stand that the illness is not somatic. And that depression can occur as a secondary factor. I am glad to hear her psychiatrist (and psychiatrists are generally M.D.'s who have also been trained in the field of psychology, sometimes you can find M.D.'s that have a Masters and a Doctorate in Psychology) supports her..has her psychiatrist written consultant letters on her behalf to any of the neurologists that have been seen? Years ago I was very fortunate and too naive to know how fortunate..my M.D. supported me, sent me to an infectious disease specialist (this was in the late '90s) a rheumatologist and something else I can't recall...with requests for those physicians to chime in on their diagnosis..he did a letter for me to take to them. Also something else I learned along the way was if a medical institution itself does not believe in a condition that belief tends to filter to most personnel at said institution. (An ex. would be Mayo Clinic which as recently as five years ago did not acknowledge CFIDS as a genuine medical illness) Oddly enough it is often the well-respected facilities that are the last to " recognize " conditions as valid. So don't be shy about shopping about for different neurologists in different areas to the extent you are able. I hope you might find something useful in this post. My best to you and your daughter. Marie in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Barbara This is a section from the www.cdc.gov/cfs website under " Treatment " ...has your daughter ever seriously been evaluated for " Orthostatic Instability " ? Has her diagnosis of CFS/M.E. been taken seriously by the neurologists she has so far seen? " Orthostatic Instability Some patients with CFS may also exhibit symptoms of orthostatic instability, in particular frequent dizziness and light-headedness. Depending on severity and clinical judgment, these patients should be referred for evaluation by a cardiologist or neurologist. Specific treatment for orthostatic instability should only be initiated following confirmed diagnosis and by clinicians experienced in evaluating therapeutic results and managing possible complications. Treatments for orthostatic problems include volume expansion for CFS patients who don't have heart or blood vessel disease. If symptoms don't improve with increased fluid and salt intake, prescription medications and support hose can be prescribed. During office visits, provide a place for CFS patients to recline if they have difficulty staying upright for more than a few minutes at a time. " Marie in IL(US) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 If the pain is in your legs/muscles, increase you magnesim levels and see if that helps. Go to at least 500-600 mg a day. Janet cf_alliance wrote: (Note: Email received by CF-Alliance.) I have CFIDS and does anyone have suffer from severe pain, nausea, I have most of the other symtoms, the only things that helps the pain is strong pain meds which cause so many other problems, I have tried herbs for the pain but nothing seems to help, people I have spoken with do not seem to have this type of awful pain and nausea, all the tests have come back normal, I have tired several holistic avenues but no one can relieve this pain. I just feel like I am going in circles. Thank You, Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Hi Jeannette, mine is speeled with one (N), My Doctor has given me Phenergan(25mg) for nausea, and it does help it. It only lasts about 4 hours, but that is fine if it works. Also have pain, and many other symptoms, but wanted to tell you about that med. Take care, Jeanette > > (Note: Email received by CF-Alliance.) > > I have CFIDS and does anyone have suffer from severe pain, nausea, I > have most of the other symtoms, the only things that helps the pain is > strong pain meds which cause so many other problems, I have tried > herbs for the pain but nothing seems to help, people I have spoken > with do not seem to have this type of awful pain and nausea, all the > tests have come back normal, I have tired several holistic avenues but > no one can relieve this pain. I just feel like I am going in circles. > Thank You, > Jeannette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 How about the Attorney General? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 I suggest getting the book An Alternative Approach to Allergies by Drs. Theron G. Randolph and Ralph W. Moss., studying it and making sure those in charge learn what this is about. They need to know. People don't understand this illness but with the poisoning of our world these things will soon become very common and actually already are. Even mental ills may be caused by environmental toxins! This book is an absolute must for anyone who has to deal with MCS. I am forever photocopying pages out of it to give away. It's been published in other languages as well. I got my first copy in German from the doctor I used to work for. All the little oddities like my daughter getting sick in the back seat of the car are explained in detail in this book. If the judge isn't an environmental specialist, she needs to call a witness in who is! She's made herself a very foolish-looking person by her actions and needs to be educated. If you can find it in your heart to send her a copy of the book, then please do so. It may help the next person who has this challenge. Sharon > > (Note: The CF-Alliance received this urgent email, requesting advice.) > > My son and I were exposed to chemicals and mold and now have chronic > fatigue and chemical sensitivities. We went to one doctor in southern > CA > who didn't believe in our illness, called our medical history crap, > and > turned us into child protective services for some psy. disorder she > remembered from medical school. Quote Link to comment Share on other sites More sharing options...
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