BuddyLeesWife

It was the psychiatrist that suggested my husband get tested by both a neurologist and cardiologist to determine the cause of his syncope since he saw nothing psychological to explain the events.

As Many as 28,000 Guidant Pacemakers May Need Replacement Yael Waknine; July 19, 2005 ? Guidant Corp. has warned healthcare professionals and consumers via letter that replacements may be needed for nine pacemaker models made between 1997 and 2000, of which approximately 28,000 remain implanted in patients worldwide. The U.S. Food and Drug Administration (FDA) has been apprised of this action and may choose to classify it as a recall. According to the letter, a hermetic sealing component used in certain pacemakers manufactured between Nov. 25, 1997, and Oct. 26, 2000, may experience gradual degradation, resulting in a higher than normal moisture content within the pacemaker case late in the device's service life. Affected models include the Pulsar, Pulsar Max (I and II), Discovery (I and II), Meridian, Virtus Plus, Intelis II, and Contak TR. The products are of an earlier generation than those currently available and have not been sold or implanted within the last four years; many of those currently implanted are nearing or have exceeded their estimated longevity (69 months). Device failure may manifest as one or more malfunctions, including premature battery depletion resulting in loss of telemetry and/or pacing output without warning; inappropriate accelerator function such as sustained pacing at the programmed maximum sensor rate (MSR) or a lack of appropriate rate response during activity; display of a reset warning message on interrogation; and inappropriately early display of replacement indicators. The company notes that while inappropriate accelerator function has been observed in 60% of pacemaker failures reported to date it is not a reliable early indicator of failure mode. Currently, there are no tests available to predict the risk of failure for any particular device. The company has identified 69 pacemaker failures worldwide thus far, all of which occurred at least 44 months postimplantation. Devices still in use are estimated to have a failure rate of 0.17% to 0.51% for their remaining service life. The failures include 20 reports of pacing loss, some of which resulted in syncope (five patients) and presyncope requiring hospitalization. Sustained MSR pacing has been linked to heart failure in two patients. Guidant recommends that physicians consider replacing devices for pacemaker-dependent patients. Patients with implanted devices should be advised to seek immediate medical attention if they develop a prolonged rapid heart rate, experience syncope or lightheadedness, or have new/increased symptoms of heart failure. When selecting an MSR setting, physicians should consider the potential for inappropriate sustained pacing at that level. The accelerometer function may be turned off to prevent sustained MSR pacing, though this will not prevent the occurrence of other failures. An increased frequency of programmer follow-ups is recommended to detect failures that may have already occurred. Physicians should also consider increasing the frequency of transtelephonic monitoring to detect inappropriate sustained MSR pacing and/or loss of pacing output. At each patient follow-up, the pacemaker should be evaluated for clinical malfunction, signs of early or rapid battery depletion, and inappropriate accelerometer rate responses in devices using the function. Physicians should be vigilant and look for inappropriate MSR pacing or pacing higher than the lower rate limit when the patient is at rest and a lack of pacing response to physical activity (isometrics, short hall walk). Accelerometers set at "OFF" should be temporarily set to "ON" for evaluation. Guidant will be providing replacement devices at no charge through the end of the year, irrespective of warranty expiration dates. In addition, patients will be reimbursed up to $2,500 for medical expenses remaining after Medicare and/or healthcare insurance coverage to cover device replacement or additional follow-up procedures. Further information regarding use of the pacemakers may be obtained by contacting a local Guidant representative or Guidant Technical Services at 1-800-CARDIAC (1-800-227-3422). Adverse events related to their use should be reported to the FDA's MedWatch program by phone at 1-800-FDA-1088, by fax at 1-800-FDA-0178, online at http://www.fda.gov/medwatch, or by mail to 5600 Fishers Lane, Rockville, MD 20852-9787. Reviewed by Gary D. Vogin, MD

I am sorry for your diagnosis. I too know several women who have had breast cancer and are doing great MANY years later. I hope you have a strong support network at home to help you through this difficult phase and on to recovery. Of course we are all thinking of you.

BuddyLeesWife ?Wife? so that you would know that I am participating in the forum on behalf of my husband who has NCS. ?Buddy Lee? because I am married to a real life man of action. This disorder beats him up but he keeps getting back up, brushing himself off and taking on what life has to offer. One of my friends said that many times what attracts you to your mate is what also ends up frustrating you. I am frustrated that he refuses to accept limitations and life changes demanded by this disorder and just charges ahead, sometimes provoking a crash but then he gets back up, brushes off? (you get the picture). Buddy Lee - 14-inch spokes-doll dressed in blue jeans and checked flannel shirt that starred in the death-defying Lee Dungarees ad campaign created by the Fallon McEllingott Agency in 1998. In each commercial Buddy Lee, "Man of Action" battled car fires, twisters and close calls with farm machinery while attempting to rescue babies, pets and other things from disasters. The commercials highlighted the durability of Lee Dungarees as they were blown up, set on fire and rammed through the trunk of a tree (with poor Buddy Lee inside them). The Buddy Lee character first appeared as a promotional item in 1921

I'm glad to hear you have had some positive events recently and hope they keep flowing. For your puzzles, one of my friends is an elementary/middle school librarian and I know she said they have a LISTSERV that most librarians around the country belong to. It seems to me that they would be a great group to expose to your reading puzzles. Unfortunately I don't know much about these LISTSERV groups myself but if you could somehow connect with this one it might help your exposure.

It's working for both - no problems in 2 weeks. Two weeks down and the Detrol LA (tolterodine tartrate) is working to control both the bladder and bowel problems. The urologist was fairly certain it would help the bladder incontinence and hopeful that it would help the bowel incontinence and it seems he was right. When I look up the medication, it is a "genitourinary antispasmodic" or smooth muscle relaxant. I did a search on google for hyperreflexic bladder and bowel (a.k.a. neurogenic bladder and bowel) and it appears there might be some literature tying the two of them together but it is in the Journal of Urology and the articles must be purchased. So far we are thrilled. I'll update again in a few weeks.

My brother-in-law had a Reveal Loop Recorder implanted and then removed after about 12 months. He had no problems with either procedure or during the year. The information obtained at least prevented him from receiving a pacemaker that would not have helped his condition.

I copied the following from Medscape Drug Info on Detrol LA. I found it encouraging that it is used for neurogenic causes. Tolterodine tartrate is used in the treatment of overactive bladder for the relief of symptoms associated with voiding such as urge urinary incontinence, urgency, and frequency. According to the International Continence Society (ICS), overactive bladder disorder is characterized by involuntary detrusor contractions that may occur spontaneously or may be provoked (by rapid filling, alterations of posture, coughing, walking, jumping). An overactive bladder of neurogenic origin usually has been referred to as a hyperflexic disorder, whereas one that is nonneurogenic is referred to as an unstable disorder. The hyperflexic overactive bladder disorder usually involves a neurologic disorder. Tolterodine tartrate is used for the management of symptoms associated with both neurogenic and nonneurogenic overactive bladder.

Thanks for the suggestions. So far, 5 days and doing well with the Detrol (no noticeable side effects) but now the real test begins since we are back to work and a more uncontrolled schedule. He has committed to trying to take better "preventive" care of himself and that hopefully will go a long way to keeping his symptoms under control. It's difficult for him to accept limitations but I think this has really hammered the point home that he has to.

My husband has NCS and this is a typical symptom for him. In fact, before he was diagnosed I am guilty of accusing him of drinking too much and not fessing up to it. For him, it is caused by low blood pressure which in most cases is relieved by drinking lots of fluids and laying down. Usually he is "recovered" after about 30 minutes. If not treated with fluids and laying down, his BP can go too low and this can lead to syncope (passing out).

The urologist agreed that the bladder & bowel problems are most likely related to his NCS. I don't think I explained it well. There is no leaking, instead it is as though his body just decides to flush whatever it has and he usually gets a drenching sweat at the same time. Otherwise he is "regular" in this department. The first thing he wants him to try is Detrol (for overactive bladder) with the hope that it would delay the response and buy him some time.

My husband has taken Effexor XR for the past 2.5 years for NCS and it has worked well for him. He was allowed to ramp up on the medication slowly. Every time he increased the dose, he would have about 2 days of slight but annoying gastro problems so he always started the increased dose on a Friday so that the problems occurred on the weekend when his schedule was more flexible. I hope it works for you.

Thanks for the suggestion. He is seeing a urologist Thursday but the pattern of incontinence does not match any of the criteria on their standard questionaire so we aren't really hopeful. This has been a recurring problem but it has gotten much much worse in the last few weeks so we are now thinking that maybe the low dose of beta blocker he was prescribed has been a negative contributor - we're checking with the cardiologist.

I love the bop on the head thing - much more memorable than a handshake! Congrats - I hope your soaring mood and energy level continue.

We are lucky in that my husband's syncope is under control for the most part; however, he does have periodic episodes of losing control of his bladder or bowel or both. These attacks seem to come in bunches (just like the syncope used to) and really cause disruption to daily living and especially work. The doctors believe it is a type of pre-syncope event and are stumped as to any specific treatment for just these episodes. He does take his meds consistently and drinks lots of water. What he doesn't always do is get enough sleep or put limits on the number of hours he works but then the episodes don't seem to correlate directly to times when he is over extended. I know I have asked before but I keep hoping someone new will join the board with similar problems and have a suggestion or two. I certainly hope none of you develop these symptoms. We're open to any ideas. Thanks

My husband still seems to be benefitting from taking the prescription vitamin supplement Cerefolin. I don't know if vitamin B-complex and folate would do the same thing or not (it didn't have the same effect on my husband). Janine - I love the yoga story - similar man in my class My yoga instructor had an interesting comment on yoga and alzheimers patients. For her real job, she attended a medical function and was talking to a man that manages three assisted living facilities specializing in alzheimers patients. He told her that they have started having the patients do yoga, specifically a mild/modified inversion every day and that they have noticed improvements in their functioning. He also noted his observation that they don't have any police, firefighters or construction workers (in other words, people who work outside) in his facilities - just an observation but that's how some research ideas get started. She never did tell him that she taught yoga so he wasn't just trying to connect to her. The inversion she recommends is "leg up on the wall" or something close to that name. You lay on the floor and scoot your bottom close up to the wall. Then you manuever to get your feet up straight against the wall - so your body is now in an "L" shape with your legs up and your back flat to the ground. Put your arms out to the side in a "T" shape, close your eyes, breath, and relax for about 10-15 minutes. This is the same pose that is recommended for headaches and I have used it for that. An easier modification is to place your legs on a couch or chair in a bent fashion instead of up the wall. I know that inversions can effect blood pressure so they certainly are not suitable for everyone.

My husband is on Effexor XR - no weight gain from the medication.

I'm just wondering if the energy gel packs (Power Gel, Gu Pac, etc) would help. They are used by athletes and contain electrolytes and carbohydrates (simple & complex) in a concentrated gel that you squeeze into your mouth - kind of similar to fruit flavored toothgel. Obviously they wouldn't be for long term but maybe they would help in a crisis. They can be found at sporting good stores (running, hiking) and specialty food stores (Trader Joe's for one) and cost about $1.00/pack. They come in a variety of flavors (some with caffeine). I just grabbed a package (Tangerine w/ double caffeine) Power Gel made by PowerBar ( www.powerbar.com ). 1.4 oz contains 110 calories, 0 fat, 45mg sodium, 45mg potassium, 90 mg chloride, 6g sugars, total carbs 26g.

Check out the study at National Institute of Health on "Yoga as a Treatment for Insomnia". I wonder if you obtain a copy of the yoga routine they are using in the study? http://clinicaltrials.gov/show/NCT00033865 Study start: April 2001; Expected completion: September 2006 Insomnia is a sleep disorder characterized by a chronic difficulty in initiating and maintaining sleep which has a relatively high prevalence and a significant socioeconomic cost. There is good evidence that cognitive and/or physiological arousal, associated with sustained sympathetic activation, is one of the underlying causes of insomnia. Relaxation treatments such as progressive relaxation and meditation which address the cognitive and somatic arousal associated with insomnia have been found to be effective. Yoga is a comprehensive discipline which includes physical exercises, postures, breathing techniques, and meditation, for the purpose of improving health and well being. Research studies have documented the effectiveness of yoga in reducing sympathetic activation and cognitive and somatic arousal and in the treatment of specific medical disorders. Although it has been used and recommended for the treatment of insomnia, its effectiveness has not been evaluated in a randomized, controlled study. The aim of this proposal is to evaluate the effectiveness of yoga, relaxation exercises or sleep hygiene in the treatment of chronic psychophysiological insomnia. A subjective measure of sleep onset latency will be derived from daily sleep diaries, and an objective measure will be drawn from polysomnographic recordings. Sleep onset latency will be evaluated before and after a two month treatment period in a total of 48 young men and women who have been carefully screened for psychiatric and medical disorders. Subjects will be assigned to a yoga, relaxation exercise, or sleep hygiene treatment group. We anticipate that yoga practice will prove to be an effective treatment for insomnia which will yield significant improvements in sleep onset latency. We also anticipate that these improvements will be maintained at long-term follow up evaluation.

Windermere House in Windermere Ontario is my husband's favorite vacation spot - we spend a week there every September ( www.windermerehouse.com ). It is a great spot for outdoor activity (golf, swimming, kayaking, boating, biking, hiking) and equally great for just hanging out on the veranda to enjoy the view and chill. They have a great pub/restaurant with casual fare, fantastic gourmet dining available and there are cottages available with kitchens and grills. During the summer months they have full and 1/2 day supervised kids activities. There are some resort towns nearby (Port Carling, Bala, Bracebridge, Hurntsville...) that you can visit for shopping but there is really nothing else in Windermere itself The inn is only open from Mid-May to Mid-October and my suggestion is that you avoid the months of June and July as the blackflies are nasty during that time. Windermere is a 2+ hour drive north of Toronto in the Muskoka area (Ernie, if you haven't been there you should definately visit). I love this place!!!!!!

The hardest part about not going is that you won't have the support of family to help you through the grieving process. Please make sure you are not alone on that day. I really like the suggestion about sending something to be read at the service or just tucked into the casket. Take strength from the fact that your family understands your situation and that you have many here who are thinking of you. I am sorry for your second loss in such a short time period.

Southeast of Flint, Michigan

FOUND IT - from the Vanderbilt Autonomic Dysfunction Center website http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4789 Driving Issues Related to Syncope Patients with mild neurally mediated syncope have no restrictions on driving private vehicles and should have a 1 month event-free period before driving commercial vehicles. Mild neurally mediated syncope is characterized by mild symptoms (usually without syncope), occurs with warning, usually occurs only with standing, and occurs infrequently. Severe neurally mediated syncope is characterized by severe symptoms (usually syncope), occurs without warning, occurs in any position, has no clear precipitating causes or occurs frequently. These patients are allowed to drive private vehicles after 3 months of documented control of the condition and commercial vehicles after they have been symptom free for 6 months. Untreated patients with severe neurally mediated syncope are completely prohibited from driving.

Here's what we were just told by a neurologist. If you have an unexplained SEIZURE, then Michigan law requires that you do not drive until you have 6 months seizure free or if cleared by a neurologist. If it was not a SEIZURE but syncope did result, he told us that the cardiologist has more leeway in clearing the person to drive based on the case particulars and effectiveness of treatment. I've attached the epilepsy website that lists driving laws for the various states but only as they relate to seizures. I just read the same laws for unexplained syncope but I can't remember where they are. I'll try to locate them for you; however they may also vary by state. At least when you read the rules on the epilepsy site you can see that consideration is given to an aura or advanced warning so I think you have a good story of never having passed out while sitting. Good luck - I'll keep looking. http://www.epilepsy.com/epilepsy/rights_driving.html#m

I'm happy - my husband passed out today during his Tilt Table Test. He was diagnosed in 2002 with NCS even though his TTT was negative. It has always been a concern to other doctors and I must admit to me as to whether the diagnosis was correct. I have been worried that some other disease or structural problem of the heart was causing his syncope (as if this isn't bad enough). We recently had a consultation with a new neurologist and he was also unsure of the diagnosis so he ordered more testing and also referred us to a new EP Cardiologist which lead to the new TTT. Following is an article in Medscape that talks about a new methodology for TTT (I have posted the conclusion and the link). Hopefully this will make the test more readily available. My husband did have the nitrate testing but he had the longer version of the test. Diagnostic Value of Nitrate Stimulated Tilt Testing Without Preceding Passive Tilt in Patients with Suspected Vasovagal Syncope and a Healthy Control Group Conclusions Nitrate stimulated tilt testing, without a preceding passive tilt phase, and limited to a test duration of 15 minutes, provides an accurate, sensitive and specific method to provoke vasovagal reactions in subjects with clinically suspected vasovagal syncope. This new methodology of nitrate tilt testing provides a practical and easy-to-perform method of eliciting a diagnosis of vasovagal syncope. By reducing the cumbersome nature of the test, its availability and usage may be increased, thereby providing a positive contribution to the current management of patients with syncope. http://www.medscape.com/viewarticle/498417_1