BuddyLeesWife

You guys are my support group! Fortunately my husband's symptoms from NCS are mostly under control and he is able to work and participate in most activities; however, we have made changes in our lifestyle and we have aggressively pursued treatment mostly because of what I have learned from this site. Most of my encouragement comes from the open, intelligent, sensitive, witty and helpful information provided by this group. I do think privacy is a huge issue for the caregiver support forum. Since this is not my illness, I try and limit my input to what I believe my husband would offer himself; he knows I participate in this forum and trusts my judgement but it is still an issue of judgement. My true concern is for his twin brother whose symptoms are not controlled, but I am further removed from his situation and he has not expressed an interest in participation in the forum. The other difficulty I see is the guilt angle. I know I have mentioned before that I feel guilty whenever I complain of how this has affected my life because he is the one really struggling and working through it. That is what this forum helps me understand. As I said, we are fortunate.

Easy Crock Pot Stuff: Turkey & Potatoes: 1 frozen turkey breast (a real one) 1 jar turkey gravy or 1 can cream of mushroom soup 2-4 baking potatoes In the morning, put the frozen breast in the crockpot. Top with the gravy or soup, cut the potatoes in half and place on top and turn it on low. In the evening when you come home it will be ready to eat. Add some cranberry sauce and stuffing mix and you have a mock Thanksgiving dinner. I have also used quarters of acorn squash in place of the potatoes. The gravy and soup is optional and since the turkey breast is placed in the crock-pot frozen you don't even need to add any additional water. I have used apples, lemons and different spices to change the flavor. The leftover turkey is great for sandwiches or burritos. 1-2-3 Split Pea: 1 ham bone (with some meat remaining, all fat removed) 1 bag split peas 1 package Knorrs vegetable soup mix 7 - 8 cups of water In the morning, place everything in the crockpot and turn it on low. In the evening, all you need to do is remove the ham bone, shred any remaining bits of ham and return them to the soup. The vegetable soup mix adds all the spices and the carrots, onion, celery that you would normally spend time chopping up. I first made it this way when I ran out of time one morning and it was so good that it is now my standard method. If you don't have a ham bone, I have used a smoked ham shank from the meat market (it cost a couple bucks) or you can ask the butcher if they have any ham bones to sell.

My optometrist recommends Systane for dry eyes. It is also best used in the evening or when you have some down time as it is thick and will make your vision blurry for a while. Available at the drug-store with the contact lens supplies.

You may want to check out the American Council on Exercise website. If you use the link below you should arrive at the Exercise With Health Challenges Fit Facts. Several listed are hypertention, fibromyalgia, chronic fatigue, heart disease. I copied some of the suggestions in the hypertention write up since you mentioned that you heart starts beating fast - note that it recommends low resistance and high repetitions when using weights and only after conditioning has been improved. http://www.acefitness.org/fitfacts/fitfacts_list.cfm#6 Exercise and hypertension Endurance activities such as walking, swimming, cycling and low-impact aerobics should be the core of the exercise program. Exercises that include an intense isometric component that can cause extreme and adverse fluctuations in blood pressure should be avoided. As aerobic conditioning improves, add low resistance, high repetition weight training. Circuit training is preferred over free weights. During weight training, holding one's breath should be avoided because it can result in large fluctuations in blood pressure and increase the potential of passing out or, in some individuals, possibly result in life threatening events such as abnormal heart rhythms. Ideally, hypertensive individuals should exercise five to six times per week depending on their initial fitness level. However, improvement can be achieved with as little as three sessions per week. The total exercise duration should be in the range of 30 to 60 minutes per session. People with lower levels of fitness should start with shorter durations (10 to 15 minutes) and gradually (5 minute increments every 2 to 4 weeks) increase to the 30- to 60- minute goal.

My husband takes Cerefolin and has noticed that it helps with fatigue - I notice that he is more aware and alert (he has NCS). We got it at Rite Aid but the pharmacist did have to order it for us.

My brother-in-law had a loop recorder implanted and then several months later had it removed. I only remember that he had no problems with the outpatient procedures and I don't recall any complaints about the device while installed. They made a "pocket" under the skin where and device is inserted and in the event that you move forward and receive a pacemaker this same space would be used for it. For him, the loop recorder proved that a pacemaker would not help his syncope. I'm sorry I don't know more of the procedural details but I wanted to let you know that he did not experience any difficulties. On his recent trip to Mayo, the cardiologists spoke highly of the loop recorder and told him that they were impressed that his local Drs had ordered the implant. I just found the procedure description from the Reveal monitor my brother-in-law had implanted - hope this sets your mind at ease: The Procedure How is the Reveal? Insertable Loop Recorder implanted? Implanting the Reveal Insertable Loop Recorder takes about 15 to 20 minutes and can be done under a local anesthetic. The physician makes an incision about 2 cm. in length (3/4 of an inch), creating a pocket the same size and shape as the Reveal Insertable Loop Recorder device. Once the device is inserted in the pocket, it is programmed to record the ECG during a fainting episode. No overnight hospital stay is required. When heart activity is recorded during an actual fainting spell, and the physician is satisfied that heart rhythm-related causes can be ruled in or out, the device is removed. Is the implant procedure painful? The implant procedure is relatively painless. Local anesthesia is used and the incision created is quite small - about 2 cm. (3/4 of an inch) in length. What are the risks of the Reveal Insertable Loop Recorder implantation surgery? Risks associated with the Reveal Insertable Loop Recorder implantation surgery are minor and rare. They include infection at the implant site and reactions to local anesthesia. These are risks common to all forms of minor surgery. Will the implant affect my physical appearance? The implant is visible as a slightly elevated area on the skin at the implant site. How long will I have to have the Reveal? Insertable Loop Recorder? Generally, the Reveal Insertable Loop Recorder will remain in place until it records an episode of syncope to the physician's satisfaction, that is, until the physician can rule in or rule out an abnormal heart rhythm based on data from the Reveal Insertable Loop Recorder. The battery life of the Reveal Insertable Loop Recorder is about 14 months. If a satisfactory diagnosis has still not been made after 14 months, the physician will decide what to do next. http://www.medtronic.com/servlet/ContentSe...t_art_procedure

http://www.yogajournal.com/poses/690_1.cfm How about trying the Legs-Up-the-Wall-Pose from yoga? It might be worth trying for 5-15 minutes to see if it does any good.

I had to take iron supplements for anemia several years ago and they are hard on your stomach. I remember telling the Dr. that I was taking a multi-vitamin with iron and he said that the supplements for treating anemia are much, much stronger. I think I took Feosol, available in the pharmacy without a prescription but recommended to be used only under a Dr's supervision. The supplements can be constipating so the Dr. suggested that I also take a stool softener (not a laxative) at the same time and it did help - so did taking them with food. Make sure your Dr. is okay with you taking this sort of iron supplement. I can't help with your other questions as my anemia was caused by "girl stuff". I can tell you that I felt horrible and totally exhausted during the several years that I struggled with it.

You might find some useful information on the American Council on Exercise website. They have a listing of Fit Facts that discuss exercise under a variety of health challenges including: hypertention, fibromyalgia, heart disease, chronic fatigue. The following link will take you to the listing of Fit Facts http://www.acefitness.org/fitfacts/fitfact...FTOKEN=22962609

My husband has been doing well taking Cerefolin, the vitamin-based prescription, and feels less fatigued with no negative side effects to report. There is an extensive recent post on the subject.

My husband has NCS. When my husband's symptoms were the worst, he experienced loss of both bowel and bladder control on several occasions prior to diagnosis and treatment. Somewhere I have an article that lists this loss of control as one of the symptoms of NCS but I was not able to find it this morning. I think of it as another pre-syncope symptom, where you are not getting enough oxygen to the brain so some of the auxilliary functions shut down to conserve and protect the brain. I'll keep looking for the article.

My husband takes Effexor XR and when he was starting it I remember nausea and some other gastro problems for a few days, then he would be OK. The ramping up schedule from the doctor was to increase every 3-4 days but because of the problems we stretched the schedule out so he always increased on a Friday which means that his yucky days would fall on the weekend when we had more control over our schedule. He has bee lucky, he has tolerated the medication well for the past two years.

Can a low body temperature have anything to do with heat intolerance? I just did a search on low body temperature and this topic came up. My husband also has a regular temperature around 97.5 but even at this level you can feel the heat radiating from his body about 6" away.

Thought I would post an update. It's been 2 1/2 weeks and my husband is doing great with the Cerefolin. One day last week he complained of a headache and I thought, oh no...but it was just an isolated case and he has not had another. It has not had any sort of super-charged effect on him, he has just noticed that he is much less tired than he has been and enough of a positive effect that he suggested to his brother that he give it a try. He takes 1 tablet in the AM.

My husband started taking it about a week and a half ago and is doing well, feeling more AWAKE (his term) and looking more AWARE (my term). I hope it keeps working - so far no noticable side effects. He did discontinue taking separate B-12 and folic acid supplements but does still take a multi-vitamin.

Sue, Just to ease any concerns you may have about the tests, my husband has most of the ones you mentioned plus a Sleep Deprived EEG and a Holter Monitor. He had this testing before being referred to Dr. Grubb for confirmation of his NCS diagnosis. The Stress Test, Echo, Ultra-Sound of the Carotid artery were ordered by the cardiologist. The MRI and MRA of the brain and the EEG were ordered by the neurologist. He did not have an ENG. He passed his stress test without any problems. His twin has had these tests and numerous others with everything coming back "normal" - he just returned from Mayo and they said that he had the most extensive cardio evaluation you can get (he had a Reveal monitor implanted for several months). It would be great if they found something specific that is treatable - keep us posted.

My husband has been taking Cerefolin for one week now and has noticed that he is feeling more AWAKE! He even had one evening where he was called out for a problem at work in the middle of the night, something that would usually exhaust him for a few days until he could catch up on rest, but this time he didn't miss a beat I was trying to find out why folic acid would help with brain fog/fatigue and this is one statement that makes some sense: Folic acid, one of the B vitamins, is necessary for synthesis of nucleotides (which are the building blocks of DNA). A deficiency of DNA synthesis can most easily be seen in rapidly-dividing cells, such as immature red blood cells. Red blood cells that are formed in the presence of insufficient folic acid have shortened life spans, are larger than normal, and have reduced ability to carry oxygen. (http://www.nlm.nih.gov/medlineplus/ency/article/003686.htm). I'll be intrested to hear your ongoing experiences with this supplement - I really hope it keeps working.

My husband is also starting on Cerefolin. I faxed the information to our doctor's office and he faxed the same information to the pharmacist, neither had yet heard of it. The pharmacy had to order it and is expecting it to arrive any day. The pharmacist was very interested in the literature and surprised my husband by discussing it with him and requesting an update once he has had a chance to try it for a while. I am hoping it works as well for him as it has for the two of you - I'll make sure to post his experience. My husband's twin is at Mayo today for testing to try and arrive at a diagnosis for him. I always feel that we benefit from whatever testing he undergoes; unfortunately he doesn't seem to benefit from what works for my husband as his symptoms are still not under control.

My husband was diagnosed with NCS even though he did not pass out during his tilt table test. Approximately 9 months later we consulted with Dr. Grubb and he confirmed the diagnosis. He performed the "poor man's tilt" in the office, taking his blood pressure after he was sitting for a while and then having him stand and taking it again - his BP dropped 30 points. We have never been able to reproduce these results at home. Stress and anxiety are definately triggers for my husband's syncope and as I understand it, the same neurotransmitters (serotonin, norepinepherine & adrenaline) that control the fight or flight response also play a part in regulating BP. The good news is that my husband has not passed out in over 2 1/2 years, unfortunately he still has periodic episodes of pre-syncope and excessive fatigue.

Vitamin B12 Deficiency ROBERT C. OH, CPT, MC, USA, U.S. Army Health Clinic, Darmstadt, Germany DAVID L. BROWN, MAJ, MC, USA,Madigan Army Medical Center, Fort Lewis,Washington http://www.aafp.org/afp/20030301/979.html Oral vs. Parenteral Therapy Because most clinicians are generally unaware that oral vitamin B12 therapy is effective, 17 the traditional treatment for B12 deficiency has been intramuscular injections. However, since as early as 1968, oral vitamin B12 has been shown to have an efficacy equal to that of injections in the treatment of pernicious anemia and other B12 deficiency states. Schedule for Vitamin B12 Therapy Route of administration Initial dosage Maintenance dosage Oral 1,000 to 2,000 mcg per day 1,000 mcg per day for life for one to two weeks Intramuscular 100 to 1,000 mcg every day 100 to 1,000 mcg every one or every other day for one to three months to two weeks

When we saw Dr. Grubb this past April, he told my husband to take folic acid (1 mg or 1000mcg) a day. He also said you need to take the B-vitamins at the same time to work with the folic acid and that a multiple with B-complex should be fine. He said that while studies on vitamin supplements tend to show differing results, the studies on folic acid have ALL been positive and that there is "overwhelming evidence" of its benefit. He told me to take the same thing so we have both been doing so. My husband takes a good multi-vitamin, 800 mcg. of folic acid and a B-12 (sublingual). I am going to ask his doctor about the Cerefolin because as you noted, the folic acid is supposed to be more available to the brain. Somewhere I have a study that shows that the sublingual form of B-12 is an effective alternative for B-12 shots but I need to locate it. Thanks for sharing the information and keep us posted on your improvements (and your dance moves!)

My husband gets EXACTLY thesse symptoms when he doesn't get enough rest - in fact he has had them for the last few days. I am hoping he will recover over the holiday weekend. We went to a CFS clinic at the University of Michigan Hospital but they seemed to weigh joint pain the heaviest in the list of symptoms and did not feel his was severe enough. He does always test positive for Epstein-Barr Virus so I think it is the EBV flaring up when he is overworked. His diagnosis is NCS.

I think this article gives a good explanation of the role of Folid Acid and B12. Folic acid with or without vitamin B12 for cognition and dementia Updated: 04/01/2004 A substantive amendment to this systematic review was last made on 25 July 2003. Cochrane reviews are regularly checked and updated if necessary. Background: Folates are vitamins essential to the development of the central nervous system. Insufficient folate activity at the time of conception and early pregnancy can result in congenital neural tube defects. In adult life folate deficiency has been known for decades to produce a characteristic form of anaemia ("megaloblastic"). More recently degrees of folate inadequacy, not severe enough to produce anaemia, have been found to be associated with high blood levels of the amino acid homocysteine. Elevated blood levels of homocysteine have been linked with the risk of arterial disease, dementia and Alzheimer's disease. Such degrees of folate inadequacy can arise because of insufficient folates in the diet or because of inefficient absorption or metabolic utilization of folates due to genetic variations. Conventional criteria for diagnosing folate deficiency may be inadequate for identifying people capable of benefiting from dietary supplementation. There is therefore interest in whether dietary supplements of folic acid (an artificial chemical analogue of naturally occurring folates) can improve cognitive function of people at risk of cognitive decline associated with ageing or dementia, whether by affecting homocysteine metabolism or through other mechanisms. There is a risk that if folic acid is given to people who have undiagnosed deficiency of vitamin B12 it may lead to neurological damage. Vitamin B12 deficiency produces an anaemia identical to that of folate deficiency but also causes irreversible damage to the central and peripheral nervous systems. Folic acid will correct the anaemia of vitamin B12 deficiency and so delay diagnosis but will not prevent progression to neurological damage. For this reason trials of folic acid supplements may involve simultaneous administration of vitamin B12. Apparent benefit from folic acid given in the combination would therefore need to be "corrected" for any effect of vitamin B12 alone. A separate Cochrane review of vitamin B12 and cognitive function has been published (Malouf 2003). http://www.medscape.com/viewarticle/477429?src=search

I always appreciated your honest posts about your struggles with different medications as my husband also struggled with some of the same. Thanks for your willingness to share your experiences on such a sensitive subject. Good luck, and I hope you continue to be on the mend.

You should never feel embarrassed about asking how to modify a pose in yoga - that is one of the wonderful things about it. Remember, you are in competition with no one and you have permission to come out of a pose at any time. It is great that you are able to enjoy it.