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  1. FYI - here's an excerpt and the link to the full article. In 2006, Dr. Hannah Kinney of Children's Hospital Boston compared brain tissue from 31 SIDS babies and 10 infants who died of other causes. The SIDS babies had abnormalities in their brain stem that led to imbalances in serotonin, a neurotransmitter or chemical that helps brain cells communicate. Low serotonin famously plays a role in depression. Less known to laymen is that it also helps regulate some of the body's most basic functions - breathing, heart rate, body temperature, arousal from sleep. http://apnews.myway.com//article/20080703/D91MIETO0.html
  2. Welcome Joe, I am here learning for my rooster of a husband and his twin brother, both diagnosed with NCS. Those "drunk-like" episodes you experience were our first clues that something was wrong with my husband and in fact I accused him of not fessing up to having had a few too many a few too many times. We are still celebrating a period of "event free living" which has lasted for about 18 months now and which we attribute to his being treated with a CPAP machine for sleep disturbances. Throughout the past 10 years, my husband has been able to continue working but has had a few month-long absences. My brother-in-law continues to stuggle with more severe symptoms and is unable to work. I hope you continue improving.
  3. They found that my husband had many "muscle twitches" occuring during the night - not severe enough to be considered RLS but enough to keep him from reaching restorative stages of sleep. Since using the CPAP, he has been virtually event free from his NCS symptoms for 18 months so we can just assume that the CPAP cleared up the muscle twitches. He would have to have another supervised study to absolutely confirm that is what occurred but we are happy that his symptoms have cleared up.
  4. Hopefully it will help you as much as it has my husband who has NCS. He has been "event free" for about 18 MONTHS - yippee, and we attribute it to the CPAP use. His apnea was "moderate" but more importantly they found that he had many (I think 165) muscle twitches occuring during the night, not severe enough to be noticeable even to me, but enough to keep him from getting to the deeper restorative stages of sleep. His fatigue symptoms began improving in 2 weeks and in about 2 months, the dizziness & lightheadedness were mostly gone. I don't visit this site much anymore but I checked in today and wanted to share our experience. You can probably search for my earlier posts on this subject. Good luck and please give it a try.
  5. I am thankful for many many things but related to this disorder, I am currently most thankful for the 14 months that my husband has not had a syncope or pre-syncope event and, the fact that his brother was just approved for Social Security benefits. THANKYOU.........ThankYou..........thankyou............
  6. Great news and a great attitude to go with it! Congratulations on everything you have achieved and I wish you continued good health. My husband is in a period of good health as well and just like you we hope it continues but are making the most of every day.
  7. We are hoping that my husband is "recovered". He was diagnosed with NCS after he began having frequent episodes of near syncope and syncope. His symptoms started in his 20's but mostly when he was worn out from working long hours OR following a late night partying with his buddies. Things really progressed about 9 years ago after being diagnosed with Epstein-Barr Virus; however, his identical twin suffers from more severe NCS symptoms and he did not have EBV (he also didn't do the late night partying). So, we don't think his is due to a viral onset but more likely that the EBV wore down his body even more and allowed the NCS symptoms to take a stronger hold. It has been 9 months since his last episode! Yes, he occasionally still gets fatigued and sometimes a little down in spirits BUT there has been no syncope, no pre-syncope, no extreme exhaustion, no confusion, no uncontrolled anxiety, no deep depression, no extreme sweats or hot, hot, hot body temperature and no incontinence! He says he feels better than he has since before the EBV diagnosis. He is still on some medication but off many and he continues to use the CPAP machine nightly. We both believe the improvment in sleep has been the key to his overall improvement in symptoms. Maybe recovered isn't the correct term - I guess we are hoping that he is able to "permanently manage" his symptoms.
  8. Hello again Rosie - Glad to see you found this site too! I've posted a number of times regarding my husband's tremendous improvement since starting CPAP. For those of you experiencing headaches with the machine - did your CPAP have a built-in humidifier? My husband's does but my brother-in-law does not and he gets headaches from using his machine. My husband's machine uses at least 8oz of distilled water each night and the hose is also heated which means he is breathing warmed moist air. Just a thought. I personally would have difficulty getting used to it but fortunately he has tolerated it well. His mask is one of the "gel" type masks that fits over the nose.
  9. I just came across this article and I believe it describes what was going on with my husband and why the CPAP has helped so much to clear up his symptoms. He was diagnosed with sleep apnea and more importantly the "microarousals" that this article addresses. He continues to be event free - 10 months and counting! Night Twitches in People With Restless Leg Syndrome Produce Recurring Blood-Pressure Spikes from Heartwire ? a professional news service of WebMD Shelley Wood April 11, 2007 (Montreal, QC) Increases in blood pressure were more pronounced in patients who also experienced microarousals on EEG and in older subjects or subjects with a longer history of RLS "[People] used to think that these twitches during sleep weren't very important, but we weren't so sure," Lanfranchi said. "What found was that these movements are associated with a sudden, sharp increase in blood pressure, between 20 and 40 mm Hg. That can be very important: these are individuals in whom every 20 to 40 seconds, for the whole night, they have these twitches where the blood pressure in a few seconds increases by as much as 40 mm Hg." http://www.medscape.com/viewarticle/555021
  10. Lack of sleep, and especially lack of quality sleep, can worsen mood swings and depression and with your schedule and commitments it sounds as though you may not be getting enough rest yourself.
  11. Love the name Doctorquest - Johnny Quest was my favorite cartoon ( at least I am assuming you took the name from the cartoon). Thanks for making time for us.
  12. It has helped tremendously with my husband's NCS symptoms - in fact, unless he has some sort of relapse, we are really hoping that he found the answer for dealing with this disorder long term. He got his CPAP last July and by October he was much improved and he has stayed that way for the past 6 months. His fatigue level is normal, depression and anxiety are under control, he is no longer on anti-depressants, he has not had a pre-syncope episode for 6 months. He says he feels better than he has in 10 years! My husband adjusted to the machine quite easily after he remembered the consultants words that its "not life support so if it leaks or comes loose its no big deal". His machine has a built in humidifier and a heating coil in the hose to keep the air comfortable and prevent any drying out of his nose or throat. I adjusted to the machine easily too - It sounds like white noise they use in office settings. I have posted previously on this subject so do a search either on my name or on sleep and you will find the information. I really hope you all find some benefit with the treatment.
  13. Ernie - One more idea. I did a search on exercise in bed and another article came up on a book titled "Get Fit in Bed". The link to the website is at the bottom of the article. Exercise in Bed Improves Sleep and Fitness Says Top Chiropractor in New Book Published: Fri, 10 Nov 2006, 09:07 EST By Aria C. Munro Staff Writer, Publishers Newswire NEW YORK, N.Y. -- The co-author of the recently published "Get Fit In Bed" (ISBN: 1572244607), Dr. Genie Tartell, a nationally known Chiropractor who has appeared on ABC-TV, "The View," and the Fox morning program, "Fox & Friends," says you can get a better nights sleep by exercising in bed. Dr. Tartell wrote "Get Fit In Bed" with co-author Ted Kavanau, the founder of CNN Headline News. Tartell backs up her own experience by citing a January 24, 2006, New York Times, article which quotes a leading researcher saying that in varying degrees, "...exercise before bed can actually promote sleep, easing anxiety and raising body temperature...." Tartell says, "No matter what your age or physical condition you can benefit from exercising in bed at any hour, whether it's morning, afternoon and even when you awake in the middle of the night, often with those seemingly uncontrollable, nagging thoughts." Dr. Tartell says that kind of repetitive thinking, which keeps many people awake late into the night, has been shown to dissipate after doing the "Get Fit In Bed" exercises, and is often followed by a return to normal sleep. The "Get Fit In Bed" exercises combine yoga, pilates, stretching, and even karate movements, into what Tartell describes as "A complete exercise program that is easy to do. Even those with mobility problems, arthritis or fibromyalgia can benefit from doing some of the exercises." The book also includes Tartell's advisories about which exercises people with specific health conditions should avoid, or how they can be done with modifications. Tartell says "Get Fit in Bed" is a "...complete exercise system in which the flow of movements have a certain physical logic in which small movements build strength and flexibility for later, broader movements." Dr. Tartell wrote "Get Fit In Bed" with co-author Ted Kavanau, the founder of CNN Headline News. The karate movements in the book were inspired by Kavanau's experience using the exercises when he was in his sixties. Kavanau says at the time he needed to do something about his very-out-of-shape condition, but did not want to get down on the floor to exercise because he gets an allergic reaction to dust. ` So he decided to do his exercising in bed. His fitness improved so much that he was able to return to his youthful practice of the martial arts and after a half dozen years was awarded a black belt. Dr. Genie Tartell, a Doctor of Chiropractic, was a Public Health Nurse and a Cardiac Critical Care nurse at The University Hospital for the Albert Einstein College of Medicine. "Get Fit In Bed" (ISBN: 1572244607, paperback, New Harbinger Publications) is heavily illustrated with photos of Dr. Tartell demonstrating the exercise program. The book is available on the Internet and in bookstores. More information: http://www.GetFitInbed.com
  14. Ernie - I am really sorry to hear that your symptoms have worsened. I remember hearing about Yoga in Bed on the news and thinking that it may be beneficial for many on this forum. Here's a summary of a CBS news story and the link to the creators website. http://www.yogainbeddvd.com (CBS) As the popularity of yoga continues to grow, so, too, does the number of workouts emerging from it. Among the latest are ones you can do ? in bed! Nationally certified New York yoga instructor and Yale grad Edward Vilga developed several. They're in a new DVD called, appropriately enough, "Yoga in Bed," based on an earlier paperback titled, "Yoga in Bed: 20 Asanas to do in Pajamas." Vilga stopped by The Early Show Tuesday, along with his friend, Broadway actress Cristy Candler, who demonstrated several of the exercises on the DVD. In addition to "Yoga in Bed," Vilga has penned three books, and will be out with another, "Yoga for Suits," in November. His hectic teaching and writing schedule inspired "Yoga in Bed." He says he found himself having very little time to practice yoga, and would end up doing brief, ten-minute moves in the morning and again at night. He quickly realized that these mini-routines were actually quite beneficial. The DVD features everything from easy-to-master physical poses to meditation practices. It has a morning routine to get you energized before you start your day, and an evening routine to relax you right before bed. The soothing background music and detailed instructions make them easy and fun to do.
  15. My husband's NCS symptoms kicked into high gear 8 years ago after a bout of Epstein-Barr virus. From adolesence into his forties he had very infrequent occurrences of syncope or pre-syncope, mainly when he was run down, sick or "partied too hard with his buddies". That all changed after the EBV. We blamed it on that for a long time and I do think it was responsible for his increase of symptoms BUT he has an identical twin brother and his symptoms also increased in severity and intensity within about 24 months of my husband's- he did not have mono or EBV and when tested, his EBV levels were not elevated - so who knows. My understanding on EBV is that almost all of us have been exposed to it at some point - some with noticeable symptoms (I had mono in college) and some with a mild form that isn't diagnosed. Then it lays dormant in our systems but it can reactivate. Do a search on Epstein-Barr and you will find some previous posts. This is always an interesting topic to me.
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