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Everything posted by BuddyLeesWife

  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.
  16. For years my husband radiated heat even though his temperature averaged 1-1.5 degrees lower than normal and it was especially bothersome when he tried to sleep. He began sleeping in one of those "wicking" t-shirts that they sell at sporting good stores (the light airy mesh ones) and that helped to at least keep him and the bed dry. The biggest help was a "Chillow" a water filled memory foam pad that we kept in the refrigerator (stored in a clean pillow case) that he put on his pillow. To me it was very cold but to him it was comforting and once his head & neck cooled down so did the rest of him and he was able to drift off to sleep. The pads were originally made for keeping dogs cool in kennels but they now market a version for people (who cares if it works!). I originally heard about it from a website for MS suffers. www.chillow.com The company claims it cools as is but we found it necessary to keep it chilled in the refrigerator. The best news I have is that his messed up temperature has also cleared up since using the CPAP and getting better sleep. After many years of service, the Chillow has been retired to a shelf in our linen closet - ready to serve again if needed.
  17. For many years, my husband was always between 96.5 and 97.5 and he too always felt HOT - he radiated heat. Right now his temperature is normal, it is another part of his system that seems to have "repaired" itself since he has been using the CPAP for sleep apnea and getting better sleep.
  18. My husband has been takin Detrol LA for over a year now and other than dry mouth, he has had no other symptoms. If you do a search, you will find my previous posts about how it has virtually eliminated his bladder and bowel incontinence. He has NCS. He did start with taking regular Detrol twice a day before moving up to the Detrol LA extended release formula...maybe that helped him ease into the drug. He has been lucky that he is able to tolerate medications fairly well.
  19. Tearose, My husband was snoring, especially when he would sleep on his back but most the time I was just able to nudge (elbow) him in the back to get him to roll on his side and stop. We pursued the sleep study because even though he appeared to sleep well and enough he continued to be extremely fatigued. He had about 110 apneas, split between apneas and less severe hypoapneas and 165 "muscle twitches" during the 7 hour test. He noticed a lessening of fatigue after about a week of CPAP use but we began to see real improvements in his other symptoms after a few months use. The drs said that many times CPAP use would resolve the muscle twitches, otherwise they would try different medications. We can only assume that the CPAP has in fact reduced the muscle twitches - I don't think insurance would cover another sleep study to prove if that is really the case. Regarding the article - timing is everything, I found it yesterday morning, minutes before reading your post and I just had to reply. I really don't know for certain that the CPAP therapy is resonsible for his improvement but he has been struggling for about 8 years and trying different medications and this has been a far more significant improvement than anything we have experienced thus far.
  20. I'm glad you continue to find more answers (and validation). Quality Sleep has been my focus since my husband began CPAP therapy and started seeing much improvement in his symptoms. This morning I found another article on sleep and the autonomic system. I am wondering if the "sleep micro-arousals" are what my husband was experiencing and if the CPAP has helped resolve them. His sleep study resulted in about 110 apneas and 165 "muscle twitches" - the dr's felt that the muscle twitches also kept him from reaching the restorative sleep stages. These twitches were not noticeable by us (its not as though he was jumping and jerking in bed) so maybe they were similar to the micro-arousals in the article. Whatever the explanation, he says he feels better than he has since 1998 when his symptoms kicked into high gear. Since you mentioned sleep, I thought I would comment once again on our positive experience and include the article abstract. Wishing you Sweet Dreams........... Genesis of sleep bruxism: Motor and autonomic-cardiac interactions This is a short review paper presenting hypothesis to explain the mechanism that may be involved in the genesis of sleep bruxism (SB). In humans, SB is a repetitive sleep movement disorder mainly characterized by rhythmic masticatory muscle activity (RMMA) at a frequency of 1Hz and by occasional tooth grinding. Until recently, the mechanism by which RMMA and SB episodes are triggered has been poorly understood. It is reported that during light sleep, most SB episodes are observed in relation to brief cardiac and brain reactivations (3-15s) termed "micro-arousals". We showed that RMMA are secondary to a sequence of events in relation to sleep micro-arousals: the heart (increase in autonomic sympathetic activity) and brain are activated in the minutes and seconds, respectively, before the onset of activity in suprahyoid muscles and finally by RMMA in jaw closing masseter or temporalis muscles. In non-human primate study, we have shown that the excitability of cortico-bulbar pathways is depressed during sleep; no rhythmic jaw movements (RJM) are observed following intracortical microstimulation (ICMS) of cortical masticatory area (CMA) during sleep compared to the quiet awake state. The above results suggest that the onset of RMMA and SB episodes during sleep are under the influences of brief and transient activity of the brainstem arousal-reticular ascending system contributing to the increase of activity in autonomic-cardiac and motor modulatory networks. PMID: 17313939 [PubMed - as supplied by publisher]
  21. I'm sorry for your loss. Pets really do claim a big part of our lives. I have a suggestion. When my last two dogs died, I jotted down a few things about them: their nicknames, strange things they did, that sort of thing. After reading your post, I just pulled those out and read them, and enjoyed them all over again. Some of the things I would have forgotten had I not done this - especially some of the nicknames (all of my pets have numerous nicknames). For example, my lab Basil had numerous names, the most consistently used was Mr. Distinguished, coined by one of my friends because of how he would pose for photos and Thunderbolt, affectionately assigned by my husband when he slowed down in his latter years. Basil was most known for his frisbee catching skill but the most unique was his ability to body surf on the waves of Lake Michigan - it was really something to see him close his eyes, push his paws forward and surf onto the beach. My Airedale Pete was something else. Devil Dog was the name most associated with him but he was also referred to as Bloomer Butt, Poodle Head (both due to a bad haircut) and Mr. Hunka among others. Pete loved to smell the roses and then eat or stomp any bees that flew out of the bush! His favorite toy was a pumpkin - he stole one from a decorative autumn display on the front porch and had so much fun with it that we continued to buy him pumpkins and gourds to play with the rest of his life. And he was the only "double scratcher" I know of - he would balance on his rear and then scratch with both back paws at the same time. I think your daughter will love coming across this when she is older and fondly remembers her first pet (and so will you).
  22. Hi Poohbear, I can only comment on my own decision and you also need to remember that I don't have autonomic issues that further complicate the picture. I had a laproscopic assisted vaginal hysterectomy (LAVH) in 2001 after many years of problems and anemia due to severe blood loss. I had what they call a "sub total" hysterectomy where they removed only my uterus and left my cervix; I also kept my ovaries. The doctor's left the decision up to me and in fact had the same conflicting advice about whether to keep or remove the ovaries. My decision was to keep my ovaries if the surgeon could see that they were healthy, otherwise he had my approval to take everything out while he was in there. Since I had no endo, no cysts and everything looked good, he left them in and my hormones have been functioning normally for 5+ years now. The reason I decided to try and keep my ovaries was based on the advice of my family doctor who said: "Your body is used to working with your hormones. If you do go on hormone therapy, we will be continually monitoring and altering the levels to find what works". He said that is what he spends most of him time on with his older femald patients. He also said that hormone therapy has improved and is good if you need it but in his opinion the real thing was the best. I hope they are able to do this laproscopically as the healing time is much reduced. Do you have an opinion from an autonomic specialist on the ovary question? I remember that Vanderbilt was looking into the connection on female cycle and dysautonomia, in fact, here is the info from Vanderbilt's website. Hormonal influences on autonomic function A recent addition to our research endeavors is investigation into the role of reproductive hormones, estrogen in particular, in the onset and persistence of symptoms experienced by patients diagnosed with orthostatic intolerance. Women of child-bearing age are the primary patient population of this disorder, outnumbering men 6:1. While the preponderance of women suggests a link with estrogen, and it is well recognized that estrogen has broad ranging effects in the cardiovascular, central and peripheral nervous systems, little information is currently available linking this hormone to the pathophysiology of orthostatic intolerance. A focus of future research, therefore, is to determine whether there is a cyclical pattern to the symptoms of orthostatic intolerance in women, to determine whether there is an imbalance in the hypothalamic-pituitary-ovarian axis that could affect autonomic function, and to investigate the role of estrogen in autonomic regulation of heart rate and blood pressure in patients and normal controls. This is an emotional decision. When I had my hysterectomy, I had come to terms with not having kids and I was looking forward to the surgery and ending my struggles, but knowing that this would be permanent still bothered me. That and the fact that the decision was left up to me and the doctors were in disagreement also made it more difficult - I was worried about making the wrong decision. I am thinking of you and wishing you the best - I know you will make the decision that is best for you.
  23. You keep fighting Melissa - we all know how strong you are. You always have encouraging words for others - we need you back. I too am sending thoughts your way.
  24. I don't have dysautonomia but I suffered from anemia for about 9 years due to heavy blood loss during my periods so my answer to you question would be yes. My periods were also heavy my entire life but when it got out of control it was due to fibroid tumors. It is amazing to me what your body can adjust to and redefine as "normal" - I agree with lthomas that we tend to think something is OK because it runs in our family or thats how it has always been for us. I was functioning "just fine" for years and didn't realize how awful I felt until I looked back. Please keep looking into it.
  25. How are you sleeping? Sleep quality is my current favorite topic because my husband is doing so well after 6 months of CPAP therapy (for obstructive sleep apnea). Here is a link to an article on pain and a few quotes discussing the tie to sleep quality. The sleep study found that my husband was never getting to stage III and IV sleep due to numerous undetectable muscle twitches (165 over the 7 hour test). Looks like the question on pain and sleep deprivation is similar to the chicken & the egg - "which comes first?" Just an idea since nothing has yet worked for you - all we can do is share our experiences and hope that something works for someone else in the group. Evolving Changes in the Chronic Pain Paradigm CME/CE September 7, 2006; 1:00 PM Presenters: Lynn R. Webster, MD, FACPM, FASAM, and Richard Payne, MD http://www.medscape.com/viewprogram/5880 Sleep Stages and Function Humans experience 2 main types of sleep, REM [rapid eye movement] sleep and non-REM sleep. REM sleep can be subdivided into phasic and tonic stages. REM sleep is also referred to as paradoxical sleep because the sleeper is difficult to arouse despite having an EEG [electroencephalogram] that is characteristic of an alert awake state. Non-REM or slow-wave sleep is characterized by 4 main stages ranging from light sleep in stages I and II to deep sleep in stages III and IV. As we know, a majority of chronic pain patients report sleep difficulties. Many patients fail to achieve restorative sleep because they do not experience sufficient non-REM stage III and IV sleep. Failure to achieve sufficient restorative sleep can contribute to multiple long-term comorbid conditions, including fatigue and metabolic disorders. There are also reports that inadequate restorative sleep can decrease tolerance to pain. Most chronic pain patients report difficulties sleeping resulting in sleep deprivation. Many of these patients do not obtain restorative (sleep stages III and IV). As a result, patients who are sleep-deprived are known to have the following: impaired cognitive functioning, negative quality of life, increased risk of psychiatric disorders, increased incidents of bodily pain and poor general health, decreased job performance and increased absenteeism, increased risks of accidents, and increased healthcare costs.
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