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BuddyLeesWife

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  1. Not quite the answer to your question but definately related. I read books with some friends of mine and one was the Amazing Adventures of Kavalier and Clay which is centered around the publishing of comic books. As part of our discussion, we all chose Super Hero names based on our own personal traits and including our weakness (Superman's Kryptonite sp?). I became The Suggestor which is a kinder gentler version of Controlling Wench and my power was that I could make people do things by sugestion; my weakness was that my suggestions were not always the right thing to do. My husband even joined in and he designated himself The Flame, due to the amount of heat he radiates as part of his NCS. We had some really creative names in our group: Gadget Boy, Top Gun, Techno Weenie, Chameleon, The Instigator, The Flying Lemur. My neighbor's kids also played along. It's really a fun exercise in recognizing strengths and weaknesses and makes for some really interesting discussions over a few pops!
  2. Please make sure that you work with your Dr. to develop a schedule to taper off Xanax. My husband had to taper down from 1mg 6x/day (way too much), prescribed before the NCS diagnosis) to .25mg 1-2/day as needed (he has been at this dose for about 1 year now). It took him many months to wean his body off of the high dose of Xanax. It wasn't awful and he didn't have side effects unless he tried to reduce too quickly. He was only frustrated because he wanted to lower the dose and it progressed at a much slower rate that he initially thought.
  3. My husband has NCS and yes, stress is a factor for him and so is fatigue or illness or dehydration or anything else that puts a strain on the system. He is on a set of medications that seems to control his passing out for the most part but still, laying down when he starts to feel the blood pooling in his legs (heaviness and heat) is the best way for him to prevent a spell. He also needs to drink a lot when he is at this point and after about 20 minutes he is usually OK. I know your condition is difficult to control - it took us a few years to get to this point of understanding of how to minimize his symptoms. As I understand, my husband is one of the fortunate ones that get's a set of warning symptoms - many do not and the first thing they are aware of it that they are waking from passing out. PS - don't sweat the spelling Those who can spell sometimes cannot type or the brain fog kicks in and really messes things up.
  4. Hayley - I hope that you find something that will help. Many of these disorders overlap which means that many of the therapies are also the same. My husband went through cognitive therapy and it was a great benefit for him and he also suffers from depression in addition to NCS. He was diagnosed with depression first and it was actually the medication he was prescribed for depression that eased his episodes of syncope. I have an article by Dr. Grubb that states something like 50% of the patients that have NCS also suffer from depression. Both disorders are believed to be influenced by neurotransmitters (in the article, he mentions Serotonin). It is frustrating to not have a diagnosis that you do not believe in but hopefully the therapy they prescribe will help you find some relief from your symptoms. If it does end up to be a psychological problem then you are on the right path for healing. The neurologist told us that of the conditions that cause this stuff, psychological is the easier to treat. I wish you luck - we will still be here!
  5. My husband also saw an EP Cardio at Michigan Heart Group in Ypsi for tilt table testing but we too travel to Toledo for Dr. Grubb & Beverly for treatment options. He was first diagnosed by an EP Cardio at Michigan Heart (similar name but different set of Drs) in Troy and at least his diagnosis of NCS came quickly and he was directly referred to Dr. Grubb without searching for years for treatmenbt. We did not have luck at UofM.
  6. My husband dislikes it too. He drinks Powerade - it has a great refreshing taste but not nearly as much sodium as Gatorade and I find it to be less sweet. So, the downside is not as much sodium but he likes it and will drink lots of it so the tradeoff works for us. We buy the powder and mix it up ourselves. A jar of the powder costs about $3.00 and makes 2 gallons. So far we have only been able to find the powder in blue at larger food retailers (Meijers in Michigan carries it). It has been almost a year and he has not tired of the taste yet, in fact, he doesn't like fruit juices anymore because they now taste way too sweet compared to the Powerade.
  7. My husband has really strong legs and it has not affected them. Mestinon is working well for him and it will be interesting over the next few weeks to see if it also works for his twin brother who has just begun taking it. One peculiarity of Mestinon is that too much of the medication can bring on the same symptoms that is is prescribed for - muscle weakness. He has settled into taking 2 60mg tablets per day and sometimes a third if he has to work really late. We were also told that you would know fairly quickly if the drug was going to work for you or not so for us it was an easy decision to try it. He did have some muscle twitching during the night when first beginning the medication but that went away after the first two nights. Fortunately he has not noticed any other side effects.
  8. Here's a link to a Discovery Health Channel article on Syndrome X http://health.discovery.com/centers/womens.../syndromew.html
  9. Fabulous news! I hope you just continue to see improvement.
  10. On Sunday, January 22 at 10am on Animal Planet "K-9 to 5" they had a story about Independence Dogs Inc. and the dog they featured was a Great Dane that was used to assist a man with advanced Parkinsons to walk and also to get up if he falls. Because of the dogs height, he was perfect for the man to hold onto as he walked and brace himself against when he felt unstable. The dog knew how to counterbalance. I checked the animal planet website and the program listing but no information was available for that episode. I also searched for Independence Dogs Inc but the website link doesn't take you to their site. That particular dog could also sense when the man would "freeze", a symptom of parkinsons, and the dog would place his paw on the man's foot to stimulate action. Here is the link to the episode: http://animal.discovery.com//tvlistings/sc...006&channel=APL
  11. I would definately ask about premedicating due to your immune suppression. My mom had a knee replacement and she has to premedicate for the rest of her life because having something foreign in you can increase your risk for infection.
  12. Sorry that you had to find us........ Your husband's symptoms sound very much like my husband's symptoms, especially the drunken state and your noticing them first. Fortunately my husband's symptoms are now mostly under control so I cannot help with the SSDI question, but he does have a twin brother who is currently pursuing disability. His brother just received a diagnosis of NCS from Dr. Grubb after MANY years of testing and MANY different doctors. I am not really "in the loop" on their disability efforts but if I learn anything I will make sure to post it for you. As long as my husband "manages" this disorder and sets limits on what he can do he is fine but therein lies the problem. I hope you are able to find something that works to control your husband's symptoms and keeps him safe.
  13. http://www.medscape.com/viewarticle/496270?src=search American Heart Association Updates Recommendations for Blood Pressure Measurements Dec. 20, 2004 ? The American Heart Association has updated its 1993 recommendations for blood pressure measurements. The new guidelines that are published in the February issue of Hypertension emphasize out-of-office blood pressure readings, proper cuff size, and more. "Since the last statement, there have been huge changes in the technology used to measure blood pressure and in our knowledge about the significance of different measurements," lead author Thomas G. Pickering, MD, DPhil, from Columbia University Medical Center in New York, NY, says in a news release. "We've found that blood pressure measurements taken by doctors in their offices may actually be unreliable in many patients. For that reason, there is wider acceptance of blood pressure readings taken by patients in their homes, and of 24-hour ambulatory blood pressure monitoring." This is one of the points in the Study Highlights: Orthostatic hypotension is defined by a decrease in systolic blood pressure of 20 mm Hg or more or diastolic blood pressure of 10 mm Hg or more after 3 minutes of quiet standing after being supine. Food ingestion, time of day, age, and hydration can impact this form of hypotension, as can a history of Parkinsonism, diabetes, or multiple myeloma.
  14. You can get to a related article on Medscape which is free but does require a registration. Decompression Surgery May Correct Sleep Apnea Due to Chiari Malformation http://www.medscape.com/viewarticle/521168?src=search
  15. Below is a link to the article Phamacology of the Autonomic Nervous System from the Vanderbilt website - I use this to learn about some of the medications prescribed but I do find parts difficult to understand. Page 22 explains Muscarinic Antagonists and their use (I learned something new about Tomatoes - scary). Hope this helps. http://www.mc.vanderbilt.edu/gcrc/ad_cente...tonomicsPDF.pdf
  16. My husband had a fungal infection after his bout with Epstein Barr Virus and he was prescribed a liquid by our GP that he would swish around in his mouth like a mouthwash and then swallow. Sounds gross but he said it wasn't bad and it cleared things up. Unfortunately I can't recall the name of the swish but I remember it was inexpensive and he took it for over a month.
  17. My husband just asked me how I came up with the name "BuddyLeesWife" and so I showed him my reply and fortunately he likes the reference I chose - almost a superhero but more human. Anyway, I thought I would send the topic back to the top and hope to learn more username trivia.
  18. Here's the link to the Myasthenia Gravis Foundation of America's FAQ's regarding Mestinon. Fortunately my husband tolerated the drug well and ramped up to 2 60mg tablets after the first week and has felt benefits since that time. http://www.myasthenia.org/information/Mestinon.htm
  19. More detail on the supplement from the study but I still need something simpler. During each stable isotope study and throughout bedrest, subjects in the EXP group received three daily supplements (1100, 1600, and 2100 h), each containing 16.5 g essential amino acids (EAA) and 30 g sucrose (49.5 g EAA and 90 g sucrose/d). The proportion of EAA in the supplement was based on the distribution required to increase the intracellular concentration of EAA in proportion to their respective contribution to the synthesis of skeletal muscle protein (Table 1). Sucrose was added to the EAA blend primarily to improve palatability. However, changes in plasma insulin concentrations after ingestion of the supplement were also measured. The amino acids and sucrose were dissolved in 250 ml of a noncaloric, noncaffeinated soft drink. The additional daily caloric/nutrient intake (558 kcal) provided by the EAAC drinks represented a true dietary supplement and not a caloric replacement or substitution. Subjects in the CON group received only the diet soft drink. TABLE 1. Proportion of EAA in the supplement Supplement Grams -------------------------------------------------------------------------------- Histidine 1.7 Isoleucine 1.0 Leucine 3.1 Lysine 2.6 Methionine 0.5 Phenylalanine 2.0 Threonine 2.2 Valine 2.1 [Ring-2H5]phenylalanine 0.19 Glycine 0.7 Tryptophan 0.6 Sucrose 30 Total 46.5 The EXP group received three supplements per day during bedrest. Each contained 15 g EAA and 30 g sucrose. To maintain an isotopic steady state, an additional 0.186 g [ring-2H5]phenylalanine was added to each supplement. Return to article -------------------------------------------------------------------------------- HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS Endocrinology Endocrine Reviews J. Clin. End. & Metab. Molecular Endocrinology Recent Prog. Horm. Res. All Endocrine Journals
  20. Here's some interesting research about saving muscle mass while bed ridden and unable to exercise. The research was funded by NASA and the National Space Biomedical Research Institute. It looks as though most muscle mass is maintained but about 50% of muscle strength is still lost (better than all). I have not been able to find an exact description of the drinks other than "essential amino acids and carbohydrates". Supplements save muscles during bed rest By Jim Kelly SEPT. 22, 2004--The loss of muscle strength is a problem faced by anyone placed in an environment that makes the exercise and physical activity involved in normal day-to-day life impossible--a patient confined to a hospital bed, for example, or an astronaut experiencing weightlessness for weeks at a time. Now, UTMB scientists have found a way to fight this muscle-wasting process with nutritional supplements, producing dramatic results in subjects participating in a 28-day bed-rest study. A paper published in the September issue of The Journal of Clinical Endocrinology & Metabolism details the experiment, in which 13 healthy male volunteers were confined to beds in UTMB's General Clinical Research Center. Seven volunteers received drinks containing essential amino acids and carbohydrates three times each day, while six others were given a placebo with no nutritional value. Using data produced by state-of-the-art real-time muscle-protein synthesis measurements, biopsies, magnetic resonance and X-ray imaging, and strength tests, the researchers determined that the subjects given supplements retained all of their original leg muscle mass while the members of the placebo group lost about a pound of leg muscle on average. Those given the supplements also lost only about half as much leg strength as those given the placebo. "We thought it was the most astounding thing that even though our subjects did no exercise, they were able to maintain muscle mass," said UTMB assistant professor Douglas Paddon-Jones, lead author on the paper. Paddon-Jones and his co-authors, Drs. Melinda Sheffield-Moore, Randall J. Urban, Arthur P. Sanford, Asle Aarland, Robert R. Wolfe and Arny A. Ferrando, represent UTMB's departments of surgery, anesthesiology, and internal medicine and the Shriners Burns Hospital. A similar supplement regime could reduce muscle loss in astronauts on long-duration space flights (the study was partially funded by NASA), trauma victims (severe trauma diminishes the body's ability to make new muscle) and-in particular-hospitalized elderly people. "The elderly have less muscle to spare than the rest of us," Paddon-Jones said. "When they get sick or injured and wind up in a hospital bed for a prolonged period, many of them lose so much muscle mass and strength that they don't get back up. For a lot of people, this supplement could make a real difference." While the subjects in this study were healthy men between the ages of 26 and 46, the UTMB researchers plan further investigations to determine whether nutritional supplements--taken alone and in combination with resistance or walking exercise--can indeed significantly reduce muscle loss in elderly men and women during prolonged bed rest. For the full article: The Journal of Clinical Endocrinology & Metabolism Vol. 89, No. 9 4351-4358 Copyright ? 2004 by The Endocrine Society Essential Amino Acid and Carbohydrate Supplementation Ameliorates Muscle Protein Loss in Humans during 28 Days Bedrest http://jcem.endojournals.org/cgi/content/f...ournalcode=jcem For the research: http://www.nsbri.org/index.html and do a search on Wolfe bed rest study
  21. Our house is never over 65 degrees plus we have a ceiling fan directly over the bed, the register is closed in our bedroom and my husband uses a Chillow (www.chillow.com) on top of his pillow that we keep in the fridge until bedtime. Yes, he radiates heat, especially at bedtime and especially from his head. I do everything I can to keep from freezing but it is worth it if he can get to sleep - fortunately once he is out he stays asleep until the alarm goes off.
  22. Bamagirl - please call on a friend, family member, religious leader or counselor to help you through this time. I can't imagine how difficult it is but I do remember when my husband went through a similar period (fortunately it only lasted 4 months) it was really scary for us. We were able to seek help and we did or I am sure things would be different today. So please, you need someone close by - you need to pull out all the stops right now and find someone to lean on. Its my Christmas wish that you find some relief.
  23. My husband has this problem when he experiences a pre-syncope event - his body seems to flush whatever it has (sweat, bladder, bowel). He saw a urologist and was diagnosed with neurogenic bladder and prescribed Detrol LA which has been a wonder drug for him. Hopefully you never get to this point. I do know that leaking with sneezes, exertion, etc is fairly common in women after childbirth.
  24. My husband had Epstein-Barr virus in 1998 and while we believe it kicked his symptoms into full gear it does not seem to be the cause. His identical twin was not diagnosed with EBV and his symptoms increased in severity within a years time so it appears that aging has something to do with thier verison of this disorder.
  25. I just asked my husband this morning if he thinks the Mestinon is working and his comment is that he feels good so something must be working and since Mestinon is the latest addition to his meds it must be the Mestinon. I can't argue with the reasoning. He has not had any side-effects other than twitching the first two evenings. He continues to take the 60 mg tablets 2x/day and occasionally adds a third pill if he has to work into the wee hours of the morning. It really seems to help for those late night work situations.
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