BuddyLeesWife

My husband gets that - we have always considered it to be pre-syncope. His lasts for a minimum of 1/2 hour and up to several hours depending on the situation. His twin has had extensive testing for narcolepsy with cataplexy (I think I have that spelled correctly) but everything was negative so we are still considering it pre-syncope. Basically he has only one option and that is to lay down. We are hoping that better sleep with the CPAP machine will eliminate (or at least significantly reduce) these episodes. So far - 4 weeks of CPAP and looking good.

You can try filling a squirt bottle with water and squirting him in the face when he barks and saying a command like "no bark" - they use it in obedience training and it worked for my dog. It doesn't hurt them, just a light stream (not a power blast). They just don't like it.

Continued best wishes for you and Jeff as you continue to fight.

My husband radiates heat and it is also unrelated to the external temperature (and I assume he isn't experiencing menopausal symptoms ). His head gets especially hot and it occurs most frequently when he lays down at bedtime. He sleeps on a "Chillow" - a chilled mat that we keep in the fridge, and he places it on his pillow at night. He hates being so hot.

My husband is doing better with his fatigue. He recently had a sleep study and was diagnosed with Obstructive Sleep Apnea and more importantly they determined that he had 565 muscle twitches during the night which also led to what they call sleep arousals. The arousals meant that even though he had no problem getting to or remaining asleep, he never achieved the stage of deep sleep that is the beneficial restorative kind. He has had his CPAP for just over a month and is doing great. He was just taken off Mestinon about 10 days ago and he has had no ill effects from that. So, another step forward for us...... Wishing you all could have sweet dreams! I don't know if you will find this relevant or not but here is an abstract that I came across today related to CFS. 1: J Electrocardiol. 2006 Feb 28; [Epub ahead of print] Links Shortened QT interval: a distinctive feature of the dysautonomia of chronic fatigue syndrome. ? Naschitz J, ? Fields M, ? Isseroff H, ? Sharif D, ? Sabo E, ? Rosner I. Department of Internal Medicine A, Bnai Zion Medical Center and 'Rappaport Family' Faculty of Medicine, Technion-Israel Institute of Technology, P.O. Box 4940, Haifa 31048, Israel. PURPOSE: Because autonomic nervous functioning is frequently abnormal in chronic fatigue syndrome (CFS), we examined whether the corrected QT interval (QTc) in CFS differs from QTc in other populations. METHODS: The QTc was calculated at the end of 10 minutes of recumbence and the end of 10 minutes of head-up tilt. In a pilot study, groups of 15 subjects, CFS, and controls, matched for age and sex, were investigated. In a second phase of the study, the QTc was measured in larger groups of CFS (n = 30) and control patients (n = 96) not matched for demographic features. RESULTS: In the pilot study, the average supine QTc in CFS was 0.371 +/- 0.02 seconds and QTc on tilt, 0.385 +/- 0.02 seconds, significantly shorter than in controls (P = .0002 and .0003, respectively). Results of phase II confirmed this data. CONCLUSIONS: Relative short QTc intervals are features of the CFS-related dysautonomia. The significance of this finding is discussed. PMID: 16895768 [PubMed - as supplied by publisher] http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16895768&itool=pubmed_DocSum

From the Center for Disease Control (CDC) website: http://www2.ncid.cdc.gov/travel/yb/utils/y...ssNav=browseoyb Repellents Travelers should be advised that permethrin-containing repellents (e.g., Permanone) are recommended for use on clothing, shoes, bed nets, and camping gear, and are registered by the U.S. Environmental Protection Agency for this use. Permethrin is highly effective both as an insecticide and as a repellent. Permethrin-treated clothing repels and kills ticks, mosquitoes, and other arthropods and retains this effect after repeated laundering. There appears to be little potential for toxicity from permethrin-treated clothing. The insecticide should be reapplied after every five washings. The U.S. Environmental Protection Agency has registered several active ingredients for use in personal repellents applied to skin. EPA registration of repellent active ingredients indicates the materials have been reviewed and approved for efficacy and human safety if applied according to the instructions on the label. These active ingredients are DEET (N,N-diethylmetatoluamide), Picaridin (KBR 3023), MGK-326, MGK-264, IR 3535, oil of citronella, and p-Menthane 3,8-diole (Oil of Lemon Eucalyptus). The article goes on to say that DEET is the most effective. I use a soap made with Oil of Lemon Eucalyptus - it smells good however I don't rely on it to repel mosquitoes.

My husband doesn't participate but he does ask me questions about the forum from time to time - especially if anyone has a specific symptom or if I heard of anything that might help. He likes to just "go on with life" and forget as much as possible that he has this condition (which can cause a whole different set of problems). Plus, he has his brother that he can talk to.

My husband had a fair amount of body twitching for the first few nights when starting Mestinon, otherwise he tolerated it well.

Years prior to my Mom's knee replacement surgery, the orthopedic surgeon suggested that she give the supplement a try. He quoted a fairly large percentage (unfortunately I can't remember the number) of his patients experienced improvement taking it - enough that he recommended it as a first course of treatment. The downside is that it is somewhat expensive and you have to take it for about 1 month before noticing results. It did not work for my Mom but I remembered the suggestion and it is working for my husband. I hope it helps some others. Thanks Nina for fixing my typo!

The title should say JOINT Pain Relief(no way to edit the title) My husband has had pain near his elbow joints for years and earlier this year it became much worse. Years ago they wanted to do surgery to "tighten the ligaments" in his arms but he decided against that. In spring, they did testing and his Rheumatoid Factor was slightly elevated so he was sent to a Rheumatologist for evaluation of potential Rheumatoid Arthritis (RA). The diagnosis was good news - inflamation and pain near the joint but not in the joint as in RA. He was told to wear compression bands below his elbows when he did strenuous activity to isolate the tendons and allow them to rest. He was also given 3 differnet NSAIDS (non-steroid anti-inflammatory drugs) to try and pick the one that would work long term. So, he tried them for 2 weeks each and he switched took a 2 week break from Lipitor and eventually switched to Crestor for cholesterol in case that was causing the pain. The NSAIDS worked OK and dulled the pain but it was still there and we weren't keen on adding another medication to his regime (especially if it was just OK). So, he tried taking a supplement with Glucosamine (1500mg), Chrondroiten (800 mg) and MSM (750mg), 2 per day, for a month and NO MORE PAIN!!!. He plans to continue to take the supplement long term.

Here's a great presentation (actually it is a continuing education course) on The Diagnosis and Management of Restless Leg Syndrome: http://www.medscape.com/viewprogram/5101 Here's a quote from the study: Sleep Disturbance and Daytime Sequelae RLS patients may have the most disturbed and reduced sleep of all the sleep disorders. The majority of patients with RLS experience difficulty getting to sleep, frequent awakenings, reduced sleep time, and insufficient sleep.[40,66] Surprisingly, despite this sleep deficiency, daytime sleepiness or sleep attacks are not commonly reported by RLS patients. Instead, patients report fatigue, failure to concentrate, or inattention; vitality and cognition[82] are impaired. These daytime problems seem to arise as a consequence of the sleep impairment.[83] Here is another good presentation that I found titled Sustaining Wakefulness in Excessive Sleepiness: Consequence Prevention http://www.medscape.com/viewarticle/532398_27 Here's a quote from the section on Sleep Apnea Slide 11. Regression Modeling of Subjective/Objective Daytime Sleepiness and Sleepiness Responsive to nCPAP This table shows the 4 outcome measures: ESS, objective sleepiness (Oxford Sleep Resistance Test, or OSLER, which is a surrogate for the Maintenance of Wakefulness Test, or MWT), and the change in both these measurements with CPAP (Bennett et al, 1998). These findings were remarkable. The best predictor of subjective sleepiness (ESS) was microarousals, with an r value of 0.51. The best predictor of objective sleepiness was the movement index. Movement index was a better predictor of changes in both ESS and OSLER scores than was neural net standard deviation. These results show that even with all these sophisticated tests to quantify sleep disruption, the best way to predict who will be most sleepy is to simply look at which patient moves around the most in bed. Reference Bennett LS, Langford BA, Stradling JR, Davies RJ. Sleep fragmentation indices as predictors of daytime sleepiness and nCPAP response in obstructive sleep apnea. Am J Respir Crit Care Med.

My husband recently had a sleep study done and has had his CPAP for just about 1 month now. He is noticing a decrease in his fatigue level although he never had a problem getting or staying to sleep. In his case, he never reached the deep restorative sleep level due to many arousals during the night (105 apneas and 565 muscle twitches!!!!). I read a really long presentation on sleep problems and I remember a statement that went something like this ' even with all of the really sophisticated equipment we have for evaluation, the best way to determine if someone has a problem is to watch how much they move around at night'. Regarding the muscle twitches/RLS - they said that first they initiate the CPAP treatment and that in many cases it will take care of the twitches. If not, they will then work on treating the RLS. I think the CPAP may be doing the job. They told us that it would take 3-6 weeks to see the benefits of CPAP therapy. Just last week, we had an all night power outage so no CPAP and he commented on how awful and exhausted he felt the next morning. The folloowing morning he felt great. We are really hoping for continued improvement.

Welcome Dave My husband has NCS and just recently was diagnosed with Sleep Apnea and prescribed a CPAP. Fortunately he has taken to the mask well and we have noticed an improvement in his fatigue level - have you tried a different type of mask or even just the nose-buds (I think that is what they are called)? He was first started on Zoloft, then switched to Effexor XR which made a huge difference in his symptom management and now they are in the process of switching him to Wellbutrin.

My husband has NCS and neurogenic bladder (and also bowel). Detro LA has been a wonder drug for him for this condition but he did see a urologist for the treatment. The urologist was an associate of the EP cardiologist that gave a 2nd confirmation (actually 3rd confirmation) of his NCS diagnosis. Sorry I am not as familiar with PAF - I learn about the different symptoms of this disorder as they pop up and that keeps me reading enough. Here's a link to a recent article abstract on autonomic failure and the bladder. Sorry but I do not have access to the full article. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum Clin Auton Res. 2006 Aug;16(4):296-8. Epub 2006 Jun 21. Links Pyridostigmine in autonomic failure: can we treat postural hypotension and bladder dysfunction with one drug? ? Yamamoto T, ? Sakakibara R, ? Yamanaka Y, ? Uchiyama T, ? Asahina M, ? Liu Z, ? Ito T, ? Koyama Y, ? Awa Y, ? Yamamoto K, ? Kinou M, ? Hattori T. Dept. of Neurology, Chiba University, 1-8-1 Inohana Chuo-ku, Chiba, 260-8670, Japan, tatsuya-yamamoto@mbc.nifty.com. In a 66-year-old man with autonomic failure, pyridostigmine (180 mg/day orally) improved both postural hypotension and underactive detrusor bladder dysfunction. Acetylcholinesterase inhibition may be useful in the management of orthostatic hypotension and bladder dysfunction in autonomic failure patients. PMID: 16862395 [PubMed - in process]

My husband has NCS and our two dogs have been of great comfort to him, especially when he is the most symptomatic and has to spend more time at home. There's a bunch of studies published on the therapeutic benefits of pets (even fish) on blood pressure, emotional well being and even life expectancy. Yes, losing a pet is traumatic but the neat thing is that the new pet doesn't replace your beloved friend, instead they offer up a whole new set of personality traits and quirks. We will always be a dog family.

Here's my standard response for this question - a link to the article "How to Avoid Deep Vein Thrombosis on Long Plane Flights" from the American Council on Exercise. I use this advise and I give it to ANYONE I know going on a long plane trip. I personally know two people (neither with dysautonomia) who have suffered problems from this - one was extremely young and healthy and had a severe blood clot in her leg and the other suffered a debilitating stroke. Of course, you should also check with your physician. http://www.acefitness.org/fitfacts/fitfact...aspx?itemid=290

Here are a few recent abstracts related to sleep and the autonomic system. I don't have access to the full articles so I'm not sure if you will find anything of use in them or not. I hope they help. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum Med Klin (Munich). 2006 Mar 22;101 Suppl 1:178-81. Related Articles, Links [Chemoreflexsensitivity is reduced in obstructive sleep apnea and might be modulated by the autonomic system] [Article in German] Steiner S, Hennersdorf MG, Strauer BE. Klinik fur Kardiologie, Pneumologie und Angiologie, Universitatsklinikum Dusseldorf. steinest@uni-duesseldorf.de BACKGROUND: Chemoreflexes are important mechanisms for regulating ventilatory and cardiovascular function, which are supposed to be influenced in obstructive sleep apnea (OSA). PATIENTS AND METHODS: For determination of chemoreflexsensitivity (CHRS) the ratio of the RR-interval shift in the surface ECG during 5 min inhalation of oxygen via a nose mask was formed in 15 patients with suspected OSA. Noradrenaline plasma concentrations were measured and were correlated to CHRS. RESULTS: Patients with OSA showed a reduced CHRS. CHRS was correlated to the severity of sleep apnea (respiratory disturbance index [RDI]; r = -0.622; p = 0.013), and to minimal nocturnal oxygen saturation (r = 0.594; p = 0.032). Reduced CHRS was associated with higher noradrenaline concentrations (r = -0.542; p = 0.037). CONCLUSION: CHRS is reduced in patients with OSA and correlates with the severity of OSA. Further on, CHRS might be modulated by the autonomic system. Therefore, the determination of CHRS enables to estimate sympathetic activation in these patients. PMID: 16802549 [PubMed - in process] A network of (autonomic) clock outputs. Kalsbeek A, Perreau-Lenz S, Buijs RM. Netherlands Institute for Brain Research, Hypothalamic Integration Mechanisms, Amsterdam, The Netherlands. The circadian clock in the suprachiasmatic nuclei (SCN) is composed of thousands of oscillator neurons, each dependent on the cell-autonomous action of a defined set of circadian clock genes. A major question is still how these individual oscillators are organized into a biological clock that produces a coherent output capable of timing all the different daily changes in behavior and physiology. We investigated which anatomical connections and neurotransmitters are used by the biological clock to control the daily release pattern of a number of hormones. The picture that emerged shows projections contacting target neurons in the medial hypothalamus surrounding the SCN. The activity of these pre-autonomic and neuro-endocrine target neurons is controlled by differentially timed waves of vasopressin, GABA, and glutamate release from SCN terminals, among other factors. Together our data indicate that, with regard to the timing of their main release period within the LD cycle, at least four subpopulations of SCN neurons should be discernible. The different subgroups do not necessarily follow the phenotypic differences among SCN neurons. Thus, different subgroups can be found within neuron populations containing the same neurotransmitter. Remarkably, a similar distinction of four differentially timed subpopulations of SCN neurons was recently also discovered in experiments determining the temporal patterns of rhythmicity in individual SCN neurons by way of the electrophysiology or clock gene expression. Moreover, the specialization of the SCN may go as far as a single body structure, i.e., the SCN seems to contain neurons that specifically target the liver, pineal gland, and adrenal gland. PMID: 16753939 [PubMed - in process] http://eutils.ncbi.nlm.nih.gov/entrez/quer...l=pubmed_DocSum Am J Physiol Regul Integr Comp Physiol. 2006 May 4; [Epub ahead of print] Related Articles, Links The link between cardiac autonomic activity and sleep delta power is altered in men with sleep apnea-hypopnea syndrome. Jurysta F, Lanquart JP, van de Borne P, Migeotte PF, Dumont M, Degaute JP, Linkowski P. Sleep Laboratory, Department of Psychiatry, Erasmus Academic Hospital of Free University of Brussels, Brussels, Belgium. Aim of the study We hypothesize that sleep apnea-hypopnea alter interaction between cardiac vagal modulation and sleep delta EEG.' Background Sleep apnea-hypopnea syndrome (SAHS) is related to cardiovascular complications in men. SAHS patients show higher sympathetic activity than normal subjects. In healthy men, NREM sleep is associated with cardiac vagal influence while REM sleep is linked to cardiac sympathetic activity. Interaction between cardiac autonomic modulation and delta sleep EEG is not altered across a life span nor is the delay between appearances of modifications in both signals. Methods and Results Healthy controls, moderate SAHS and severe SAHS patients were compared across the first three NREM-REM cycles. Spectral analysis was applied to ECG and EEG signals. High frequency (HF), low frequency (LF) of heart rate variability (HRV), ratio LF/HF, and normalized (nu) delta power were obtained. A coherency analysis between HFnu and delta was performed as well as a correlation analysis between obstructive apnea index (AI) or hypopnea index (HI) and gain, coherence or phase shift. HRV components were similar between groups. In each group, HFnu was larger during NREM while LFnu predominated across REM and wake stages. Coherence and gain between HFnu and delta decreased from controls to severe SAHS patients. In SAHS patients, the delay between modifications in HFnu and delta did not differ from zero. AI and HI correlated negatively with coherence while HI correlated negatively with gain only. Conclusions Apneas-hypopneas affect the link between cardiac sympathetic and vagal modulation and delta EEG demonstrated by the loss of cardiac autonomic activity fluctuations across shifts in sleep stages. Obstructive apneas and hypopneas alter the interaction between both signals differently. PMID: 16675631 [PubMed - as supplied by publisher] Rapid-eye-movement sleep behaviour disorder and neurodegenerative diseases. Gagnon JF, Postuma RB, Mazza S, Doyon J, Montplaisir J. Centre d'etude du Sommeil et des Rythmes Biologiques, Hopital du Sacre-Coeur de Montreal, Quebec, Canada; Unite de Neuroimagerie Fonctionnelle, Departement de Psychologie, Universite de Montreal, Quebec, Canada; Centre de Recherche, Institut Universitaire de Geriatrie de Montreal, Quebec, Canada. Rapid-eye-movement (REM) sleep behaviour disorder (RBD) is characterised by loss of muscular atonia and prominent motor behaviours during REM sleep. RBD can cause sleep disruption and severe injuries for the patient or bed partner. The disorder is strongly associated with neurodegenerative diseases, such as multiple-system atrophy, Parkinson's disease, dementia with Lewy bodies, and progressive supranuclear palsy. In many cases, the symptoms of RBD precede other symptoms of these neurodegenerative disorders by several years. Furthermore, several recent studies have shown that RBD is associated with abnormalities of electroencephalographic activity, cerebral blood flow, and cognitive, perceptual, and autonomic functions. RBD might be a stage in the development of neurodegenerative disorders and increased awareness of this could lead to substantial advances in knowledge of mechanisms, diagnosis, and treatment of neurodegenerative disorders. PMID: 16632313 [PubMed - as supplied by publisher]

My husband was prescribed Levsin to use on an as needed basis to quickly raise blood pressure when he had a pre-syncope episode. He was prescribed another drug to try first but the problem is that when he is in that pre-syncope phase he also isn't thinking clearly so taking the pill as needed didn't work for him (so he never tried the Levsin). Apparently raising BP is a side effect of Levsin and it is fairly fast acting.

This is really easy, fairly light and mouth watering delicious. Cut peaches or nectarines in quarters, place flesh side down on the grill until heated through and slightly browned. Melt some semi-sweet chocolate chips, adding a little milk for thinning. Drizzle the melted chocolate over the warm grilled peaches and indulge.

My husband recently had a sleep study where they diagnosed Obstructive Sleep Apnea. He had 105 apneas (stoppage of breath) during the night, 565 muscle movements/twitches and never reached the deep sleep stage (the beneficial restorative sleep stage). He just began using a CPAP machine a week ago and has worked up to a full night of wearing it. We are hoping for a noticeable improvement in his fatigue level so I will keep you posted on his progress.

My husband has really struggled with this one and the past two times he has seriously tried to quit his symptoms and syncope became much worse - he has NCS. Nicotine is a vasoconstrictor so it is believed to help with his symptoms (not something I wanted a doctor to tell him) and is somewhat of a form of self medicating. BUT, he has just decided he is going to give it a try again as he knows any benefit is more than wiped out by the dangers of smoking. I remember I found the symptoms of nicotine withdrawal on one of the quit smoking websites and they definately overlap those from NCS. Good luck - I'll be interested if you learn some helpful tricks.

You can tell you are both creative people. What a wonderful memory for you - I hope you enjoy many more. Happy Belated Birthday (I used to purposely hold off giving a card until a few days late because I always liked the belated birthday cards the best).

My husband had severe bowel problems and it was not a symptom he could live with. He also had the same problem with his bladder so he was referred to a urologist. The urologist diagnosed neurogeic bladder and prescribed Detrol LA and was hopeful that it would work on the bowels too. It has been a wonder drug and even though he still occasionally has a frequent urge he has enough time to get somewhere to take care of it. The effect of the drug was immediate - he has been on it almost a year now with no mishaps. He does experience dry mouth as a side-effect. If you decide to check it out with your doctor, make sure they read the details - it is a "smooth muscle antispasmotic" which is why the urologist thought it might work for the bowels too.

I'm a spouse who puts the same restrictions on my husband (at least I try). In his case, he doesn't always know when he is going to have an episode and since you stated that 'others have called the ambulance' it sounds like you might not always know either. I definately understand your husband's point as I live in panic, especially during periods when he is episodic and if we had kids involved I would be even more insistent that he stay home. Is there someone else, a friend or relative, that can accompany you on your activities? Not only would your husband be calmed but you would be safe and probably eliminate those unnecessary ER visits. Just make sure whoever it is is knowledgeable on what could happen (better yet if they have actually witnessed an episode and know how to confort you).

My husband has "neurogenic bladder" and also bowel. His body will just decide to flush whatever it has and there is no time for planning. The urologist prescribed Detrol LA (extended release) to help buy some time with the bladder problem and he was hoping that it would help with the bowels too. This has been a wonder drug for him. He might occasionally still get an urgent urge but he has time to get somewhere. If you look up Detrol and read the detailed monograph, you will see that it is a smooth muscle anti-spasmodic - whatever, it has been very helpful for almost a year now. He does experience dry mouth with it but it is manageable and helps him stay hydrated. Good luck