BuddyLeesWife

My husband radiates heat at all times and has periods of drenching sweats with some types of exertion but also while at rest too, especially at bedtime. If he is doing chores, taking out garbage, cleaning the house then he will be sweating but if he is walking 18 holes of golf our just fooling around he is OK. When he lays down in the evening he feels like he is burning up but his temperature is always about 2 degrees less than normal. Many on the site have lower than normal body temperatures and issues with heat and sweating.

Carmen, I'm on the same thought wave. How about Black & Blue like the bruises many of the members get? Too bad it couldn't progress from Black & Blue to Purple & Green to Green & Yellow like bruises do when they are healing.

Welcome Dana - I just posted a duplicate of rqt9191 suggestions for where to find information. Not fun reading but worth the effort to learn about this disorder.

Morgan please do not waste any energy feeling guilty about trying to identify the source of your discomforts. You have been a great inspiration and provided tons of comic relief to the members on this site. As your wit continues to demonstrate, the mind is a powerful thing. We were really hoping the last neurologist we saw would find some explanation for my husband's symptoms but after very thorough testing he told us we had to further explore autonomic and psychological causes. When we expressed our disappointment he explained that this was good news - that we really didn't want to have something that he needed to treat (Parkinson's, Multiple Sclerosis, Brain Tumor, Alzheimers, etc) and that in his mind, the psychological disorder would be the easier condition to treat. I witnessed my Mother go through 4 horrible years and once finally diagnosed and treated for a psychological illness, over 20 years ago, she has been 100%. I really hope you are on a path that will help your body become healthy and strong.

My husband's April 05 appointment with Dr. Grubb was just rescheduled with Beverly at the end of this month (Oct). She explained that they are trying to have existing patients see the NP every other visit and Dr. Grubb the next time. Right now, new patients are being scheduled for April 06.

The cardio recently tried putting my husband on Atenelol (.25mg) but it caused him to have more frequent pre-syncope spells so we stopped. He was on it for about 2 months before calling it quits.

The Vanderbilt Autonomic Dysfunction Center has begun studying the effect of estrogen on orthostatic intolerance. I don't know if they have much information to share yet but following is their research topic and the link to their 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. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4784

My husband recently had his first colonoscopy and did not have any problems other than gagging down the vast amount of fluids (electrolytes) that they make you drink for preparation - fortunately that was enough to keep him hydrated. When he was talking to the doctor afterward, he was told that he could ask for the Gatorade prep the next time which would at least be an improvement in taste.

My husband has NCS and the last time we saw Dr. Grubb he said his diagnosis was in the NCS/POTS area of dysautonomia as his BP and heart rate are starting to fluctuate more. His twin brother has more severe symptoms but no firm diagnosis yet.

For my husband it is genetics as his identical twin brother has similar but more severe symptoms. We tend to refer to 1998 as the start of his full blown symptoms after having Epstein-Barr virus BUT his brother's symptoms also escalated about 1 year later without ever having the virus. So, it's probably an age related thing with them.

AWESOME! Thanks for telling us. Sleep and nutrition both seem to have a huge effect on the body.

Another link to research being done by the National Space Biomedical Research Institute. The following is from the project titled Mechanics of Cardiovascular Deconditioning: We have developed an external non-invasive mechanical prototype device, in conjunction with the Applied Physics Laboratory of JHU, that peristaltically pumps blood from lower extremities and abdomen towards the heart to maintain stroke volume and cardiac output during an orthostatic challenges. A notice of invention and non-disclosure has been filed with Johns Hopkins University There are lots of interesting research projects on this site. http://www.nsbri.org/Research/

Here's a really interesting link on space medicine and weightlessness. I've included the link to the weightlessness discussion here. Make sure you read the countermeasures section. http://www.spacedoc.net/weightlessness.html

Two weeks ago my husband had some deep cleaning done on his teeth and the next day he had a red rash on each cheek and felt generally lousy (flu like). We had some left over antibiotics so I had him take a couple and the rash cleared up in about 2 days and he felt great. Last week he had the other 1/2 of his teeth cleaned and the same thing happened - rash, lousy feeling, antibiotics. I know that dental work can introduce a lot of bacteria into the system and that people with compromised immune systems and/or heart disease frequently take antibiotics prior to their visit. The dentist will prescribe it for him, I just wondered if anyone else has had this experience (especially the rash, non-itchy just red).

In our case its more like brothers and sons. My husband has NCS and his twin brother has much worse and uncontrolled symptoms but no diagnosis yet. Just last week, my 19 year old stepson fainted for the first time so now he is going through cardio testing to rule out the more standard symptoms. Of course even our own family is not pursuing dysautonomia - my husband and I keep trying to provide the information but nobody listens.

It's amazing to me that co-workers who are just slackers are not addressed but that someone who has to take a day off due to illness AND is up front about it AND who also manages to complete and submit their materials AND who makes sure everyone else is briefed and prepared to continue without them is put on notice. My husband has experienced the same thing and I always want him to say something like "...I apologize for missing the meeting but even with all my problems I still manage to be more productive than most of you...". Somehow I don't think that would be well received. I do think it is easier for others to point to someone's illness (even though unfairly) than it is to address productivity issues of team members. I'm glad you can't be bullied. Continue to keep that promise to your cardiologist - listening to your body will keep you safe (maybe you can counsel my husband on keeping his own version of that promise).

We just celebrated 10 years too and I wouldn't trade places with any of my friends or family. Sounds like you guys are really solid and if you just look around you'll notice that most relationships are not in great shape even if they are free of illness. At least you know your stressors and can work with them and discuss them openly. I definately regret some of the things we don't do but we have found "workarounds" for them. Stay creative and flexible and do what works for the two of you.

My husband has a Chillow that he uses at night to sleep on. The heat just radiates from him at night. Although it doesn't perform as advertised, he loves it. I slip it into a clean pillow case, fold it in half and stash it on a refrigerator shelf during the day. He pulls it out and puts it on top of his pillow for sleeping and then back into the fridge the next morning. ( www.chillow.com) Looks like they were originally made for our canine friends!

When Dr. Grubb prescribed Proamatine for my husband he also wrote a prescription for Levsin to try as an alternative if the Proamatine was not effective. Because his episodes of syncope were so infrequent, he was prescribed Proamatine to take sort of like a person would take nitro - when the symptoms appear. The drug was to raise his blood pressure before he reached the point of passing out. As I recall, one of the side effects of Levsin is an elevation in blood pressure. He never did try the Levsin so I have no comments on the medication. I just wanted to alert you to the increased BP side effect.

This sounds too similar. My husband has NCS (fainting but no seizures) but his idential twin brother has very frequent and severe seizures that have also kept him from working or driving for over 2 years now. I stay in touch with this forum because I am very fearful that my husband will get worse like his brother. So far my husband has maintained at the same level and not worsened. Sorry that I don't have any answers but I thought it might be of some comfort that my husband has not gotten worse. I'll be interested in anything you learn.

My husband has NCS and he has struggled greatly with bladder and fecal incontinence and yes, it is very humiliating. In fact, this had the potential to be the straw that broke the camel's back in his situation - everthing else thrown at him with this condition he has handled except this. He saw a urologist that agreed that his problems were probably related to NCS (neurogenic bladder). If you read my previous posts you will see I explain it as his body just flushing whatever he has in it at the time. The urologist prescribed Detrol LA (a once a day version of the medication for urinary incontinence) and was hopeful that it would help and also hopeful that it would help with the fecal incontinence too. IT HAS WORKED WONDERFULLY! We did try and back down to a lower dose of the medication (Detrol 1mg) but that did not hold off the episodes. He has been taking this for about 6 weeks now and it has been a lifesaver. The urologist said he was hoping to buy him about 20 minutes to be able to hold off an incident and that seems to be what happens. His body still wants to flush everything (he gets a drenching sweat too) but he is able to easily control things until he can find a facility. When I read the Detrol detailed information (I use www.medscape.com and look it up under drug info) it does say that it works with neurogenic bladder (it is a smooth muscle anti-spasmotic). He does experience the dry moutn side effect but that just makes him drink more which is a good thing for NCS anyway.

Great suggestion Carmen to make sure to test for TIA's. That was the first set of testing the neurologists did on my husband to confirm that he was not having them. Their wording was something like "We have found no evidence to suggest TIA's". In my husband's case, we now believe it is due to the lack of oxygen from the lowered BP but it took us a long time to get to this point and we are still not really sure, more like resigned to the explanation since nothing else has shown up.

When my husband has one of his pre-syncope episodes his memory is definately affected, just the short term surrounding the episode and actually just during and immediately following the episode. Fortunately his long term memory is great and even short term when his BP is ok. I believe it is related to the lack of oxygen to the brain.

Welcome to the group. My husband has NCS and his twin brother has even more frequent and severe syncope so I hang out here hoping to learn something that will help them manage this set of disorders better. My husband claims that the BEST Rochester is Orson Wells but I haven't seen that movie version. One of my favorite Jane Eyre related books is The Eyre Affair which takes a very strange (and I mean strange) twist on the original. Good luck on your testing.

For my husband, it is best if he is able to "sleep it off" just as if he had had too much to drink. After a slightly longer than normal sleep cycle he is recovered. If that isn't possible, I would say it takes about an hour for him to be able to function normally although very fatigued.