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Old 11-22-2008, 06:37 PM   #1
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how rare is neurocardiogenic syncope?

how rare is neurocardiogenic syncope?

 
Old 07-31-2009, 06:58 AM   #2
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Re: how rare is neurocardiogenic syncope?

Quote:
Originally Posted by cbjag2 View Post
how rare is neurocardiogenic syncope?
Apparently very rare. I was diagnosed a few years ago, maybe 4 years right before I graduated from college. My drs. had me go through almost every test in the book. I think it's linked in some way to panic attacks because I was having those also. They also think there may be a genetic link, but they can't prove it because I don't think they do any studies with that. When I went to a cardiologist to have a tilt table test and it was positive the cardio said that there really wasn't a medication you could be put on. Maybe if I were older like my mom (who also has ncs and was diagnosed b4 me) he could have done that but not me b/c I was only 22. However, I was put on a beta blocker to help prior to seeing the cardio and he said to stay on that. However, it also goes to show you that drs. don't know everything b/c beta blockers like the atenolol that I was on inflame asthma if you're an asthmatic. So that kind of screwed up the asthma that I had under control for the most part. The cardio said the only thing I could do was increase salt intake, water intake, and if I start having symptoms to lay down as fast as I can b/c you can die if you don't. He also told me to not go to the rest room if I start having symptoms (which include cold sweats, hot feeling throughout your body, something called a diaphretic reaction which makes you want to vomit or go to the bathroom really, really badly, so how can you NOT go to the restroom?!) because you may pass out and hit your head, especially if you are on your own. Be careful because one of the last times I had a really bad episode I was almost purple. He also told me to lose weight, which is difficult to do when you eat lots of salt which he also told me to do. So, YES, very rare because nobody knows what to do with you.

Jenni

 
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Old 07-31-2009, 03:25 PM   #3
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Re: how rare is neurocardiogenic syncope?

Jenni - thanks for your reply! I am 58 and was also diagnosed 4 years ago. It is an illusive disease and is so unpredictable! Sometimes I think people think I am just seeking attention when I tell them I cannot stand. I find that because of ncs I have made many changes in my life, not to trigger it, without even realizing that I have made these changes. What triggers yours? Sometimes mine is triggered by walking but standing mostly. I worked in the Emergency Room and had to leave there because I was on my feet all the time and kept ending up in an ER bed with my feet above my head for 20 minutes and then back to work.

I take Florinef - my blood pressure is too low for a beta blocker. The Florinef along with lots of fluids keeps me hydrated. I have read the part about the possibility of death if you do not get down - however my cardiologist has not mentioned it to me. I also was diagnosed with the tilt table test. I passed out on a treadmill at the YMCA - so I knew something was wrong. The Neurologist told me that a hit on the head could also trigger ncs - I had hit my head on the corner of a desk two days before the YMCA experience.

I would love to know what you do to control yours. I just use Florinef, liquids, feet above my head and avoid all situations where I would have to stand. Does standing trigger you?

Thanks again for your reply - I wish we could get more research done on ncs - because I believe it has not been well studied.

Carol

 
Old 07-31-2009, 08:48 PM   #4
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Re: how rare is neurocardiogenic syncope?

People think I'm strange b/c I will lay down on the floor, even if I know the floor is dirty. I know that if I don't I could die. You're right. You tell people about how you feel and what disease you have and they don't understand out serious the disease is and that you get really sick sometimes. A lot of things trigger mine. In fact, my mom was diagnosed a few years before me and she says mine is much more severe than hers. If I stand for too long, I get dizzy and feel like I don't have enough oxygen. Then I get cold, right on the back of my neck, then hot all over, pale white (even my lips), sweating even when cold. I have the overwhelming urge to go to the bathroom. Sometimes I want to vomit, sometimes a different way. I started noticing the issue when my family was down from Indiana and we took them to Sea World. I started vomiting and thought it was food poisoning. I never felt that bad with food poisoning before, though. I started having those symptoms that I mentioned before and anxiety also, my heart sped to about 140 when I was sitting. Usually, a normal heart rate won't go above 90 when resting. That's a bit high, too but not bad. Then the next day we went to my voice lesson and I started having the same lessons and vomited all over my voices teacher's bathroom. I was having anxiety problems, too (panic attacks) which I think is related to this disease. However, I haven't seen anything that connects it. There isn't much research on the disease anyway. My mom, who has the disease also but more mildly than myself, didn't believe that I didn't feel well. I think she thought I was exaggerating. I was tutoring a student of mine in his home and started having an attack. I thought it was a panic attack, but I felt those symptoms too and I wasn't on any medication for the attacks and hadn't been diagnosed with panic attacks or ncs. I left my student's home and immediately called the dr's office. They wanted me to come in right then but asked if I could wait a day. I told them I could and went home to rest. My dad got me into psychotherapy at the hospital my parents worked at at the time. My dr put me on Zoloft for the anxiety and blood pressure medicine (atenolol a beta blocker). However, I'm an asthmatic who takes medicine that interacts badly with beta blockers. Didn't find that out until 2 years ago when I got pneumonia after a series of bronchitis episodes. I'm not on an alpha blocker that works better called Verapamil. I think I did change a lot of things. After seeing the doctor and a psychotherapist and getting tested for so many things, they finally diagnosed me. That was not fun but the nurses were nice. The only thing the cardiologist did was come in and tell me what the results meant and what I needed to do. Mostly, lose weight!!!! Increase salt intake and water intake and because I'm so young, medicine wouldn't hurt but probably wouldn't help anyway. I do change things in my life when I can't handle them. I cancel appointments if I'm going to have an episode b/c I've driven home before feeling like I was going to pass out. I did that with my friend in the car and she should have smacked me so I would have let her drive. I sometimes avoid situations where I have to stand, which is not easy considering I'm studying to be a teacher and worked for nearly a year as a preschool assistant teacher. That was difficult because you have to stand up all day for 8 hrs straight. I find that if I can't sit down, if I make sure that I move around a lot until I can sit or lay down and not stand stationary that I am ok for a little. I have many triggers. Standing, heat (live in FL in 90-110 degree weather), dehydration and eating things that make me sick. I try to stay out of the heat which is difficult. I try not to stand for too long unless I'm moving and even then I try to sit down for a little bit so I don't get sick. Sometimes I just have an episode because I had an episode. Sometimes you can't tell when they're going to come on, unless you become really in tune with your body. I think that's the main change in my behavior. I am more in tune to how my body feels and when I need to lay down. Unfortunately, make sure you don't drink the night before and come into work, have an episode, and lay down on the carpet at work. Somebody may say you're drunk at work because you're nauseous and nobody but other ncs patients really understand. Alcohol dehydrates so I would make sure you don't drink a whole lot because that can be a trigger b/c of dehydration. Keep water with you and I would have salty snacks with you. I pretty much do the same things that you do to try and control it, but you can't really control it. All you can do is monitor and try and get to it before it gets to you. I agree, I wish it was studied more. However, I think people are more likely to want to find the cure for cancer than figure out why we pass out. They don't seem to understand. We might not have an automatic death warrant, but we get really sick. Do you stay home because you're afraid you'll pass out in front of people or while you're driving?

Jenni


Quote:
Originally Posted by cbjag2 View Post
Jenni - thanks for your reply! I am 58 and was also diagnosed 4 years ago. It is an illusive disease and is so unpredictable! Sometimes I think people think I am just seeking attention when I tell them I cannot stand. I find that because of ncs I have made many changes in my life, not to trigger it, without even realizing that I have made these changes. What triggers yours? Sometimes mine is triggered by walking but standing mostly. I worked in the Emergency Room and had to leave there because I was on my feet all the time and kept ending up in an ER bed with my feet above my head for 20 minutes and then back to work.

I take Florinef - my blood pressure is too low for a beta blocker. The Florinef along with lots of fluids keeps me hydrated. I have read the part about the possibility of death if you do not get down - however my cardiologist has not mentioned it to me. I also was diagnosed with the tilt table test. I passed out on a treadmill at the YMCA - so I knew something was wrong. The Neurologist told me that a hit on the head could also trigger ncs - I had hit my head on the corner of a desk two days before the YMCA experience.

I would love to know what you do to control yours. I just use Florinef, liquids, feet above my head and avoid all situations where I would have to stand. Does standing trigger you?

Thanks again for your reply - I wish we could get more research done on ncs - because I believe it has not been well studied.

Carol

 
Old 10-15-2010, 05:16 PM   #5
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Re: how rare is neurocardiogenic syncope?

Dear Carol, ( I am on my moms account )
You said you take florinef to control your low blood pressure. I was diagnosed in March of this year and I am only 15 years old. I went through the tilt table test too and I have been taking my medication everyday. I have recently missed ton of school because I am always dizzy I know it is related to my ncs but I dont have any idea how to fix it. Do you have any ideas for me?

 
Old 01-06-2011, 04:16 AM   #6
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Re: how rare is neurocardiogenic syncope?

I was dx in August 2009 at the age of 42 but have suffered syncope since age 9 and most dr's really don't understand NCS/OI or dysautonmia. I'm an even rarer case because my TTT showed when I faint, my heart stops and my bp tanks completely.

Here's some info that I've found helpful: http://www.cccgroup.info/neurosyn.asp this site tells abit about what syncops & NCS are and goes into detail about ncs - cardiac related conditions also.

I've tried midodrine, bb's, salt/water loading and tilt training - nothing worked for me, not even a pacemaker/defibrillator until they set my HR at 60.

 
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Old 05-02-2011, 09:43 PM   #7
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Re: how rare is neurocardiogenic syncope?

I got diagnosed with ncs 3 years a go i have a pace maker set to flat out and take midodrine,fluronef and dothep. Would like to now what excercise you guys do to keep fit and to keep the weight off

Last edited by flipad; 05-02-2011 at 09:44 PM.

 
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Old 05-11-2011, 06:37 PM   #8
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Re: how rare is neurocardiogenic syncope?

I was diagnosed with NS when I was 16. It took several of every type of doctor and every test imaginable -they did the table tilt test last, of course- to finally come to a diagnosis. I spent my junior year of high school in bed, since even walking the 20 feet to my bathroom was a daunting task in itself. I gained a ton of weight, even though I was barely eating from being so nauseous all the time. I'm 24 now, and lately I've discovered that by using a stationary bike- but only the feet part (found mine for $30 at Sharper Image), I'm able to sit at the edge of my bed while exercising and if I need to, I can lay down at any moment I start not feeling well. Sometimes I'll even lay flat on my back while pedaling. It's not perfect- but it's certainly been helping me lose some of the weight I gained for leading a pretty much sedentary lifestyle.
I'm on beta blockers, Midodrine, salt pills, and drink Gatorade all the time. It seems that this prevents me from actually blacking out onto the floor, but I still have the symptoms of being constantly dizzy and feeling weak and like I'm about to faint.
The worst part is that unlike someone with a physical disability, no one can tell there's anything wrong with me. I look perfectly normal on the outside, which makes people forget, or they just can't understand it and so they automatically believe I must be lying about things like that I can't stand/wait in a line, or that no, I really can't go shopping since all the standing and walking around is too much for me.
It's been especially difficult recently because I'm in graduate school for Speech Language Pathology and I'm supposed to start my internship this semester. I don't think my supervisor really understands my condition, no matter how often or what way I try to describe it. She reprimands me for not chasing after a kid who gets up and runs around the room in the middle of therapy, or for not being able to clean up the toys from the floor or get the materials out of the bottom shelf of the cupboard. I try to tell her that the bending down and standing up too much makes me dizzier and I right away start feeling sweaty and clammy and fainty, but she just doesn't want to hear it. I look normal, so there can't be anything really wrong with me, right? I'm making it up. Even yesterday, I tried going to class and the room for whatever reason didn't have the air conditioning turned on. I couldn't stay in there, I already started feeling like I was going to faint, and later I sent an email to the professor about how to ensure the AC is turned on for next week's class and her response was, "it wasn't very comfortable but everyone else dealt with it just fine". And she is VERY well aware I have NS. I finally just sent her a link with an article that talks about the condition, because apparently me telling her all about it- repeatedly- isn't making enough sense to her, or she isn't believing it.
I've noticed that what people don't understand is that it's the little things, which the general population takes for granted. Such as bending down to get materials or put things away, or being in a properly air conditioned room, or standing in a line, or going shopping... It's things that everyone does every day that I just can't do. The problem arises when you try explaining this to them, to try to make them see that even though you look normal, you're not. Things that would just be a slight discomfort to normal people, like a hot room, can be detrimental to my health.
My fiance recently had surgery and was put on pain medication that makes him so dizzy he can't even get out of bed (sound familiar?). He finally sat me down this morning and said, "I get it now." I almost cried. Even he, who knows me better than anyone, often forgets that I have NS. (He often parks his car on the second floor of a garage and stands at the foot of the stairs, wondering why I'm not following him up them, until he remembers and admits "whoops, I forgot, sorry").
But after all this venting (which I didn't intend originally, it just turned into that since I don't really have anyone else to talk to who understands what I've gone and am currently going through), all the hurt and frustration and weight gain and insensitivity and general impediment of living the life I thought I would... At least I get a handicapped sticker.

 
Old 06-03-2011, 08:22 PM   #9
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Re: how rare is neurocardiogenic syncope?

I understand. I've been there. My first thought was to say go ahead and faint. That's the only way she's going to believe you. Just don't hurt yourself when you drop. (I'm only half kidding.)

I'm going to tell you what worked for me, and it's going to sound "preachy and nagging" and I may tell you things you're known for years. Try to overlook that. I want you to get your life back. You are on the path to change other lives. You need to fix yours first.

I have neurogenic hypotension, which, since you don't actually faint (syncope), is probably a better term for your disorder. Mine is part of what is known as Primary Autonomic Failure. My brain and my nervous systems don't work together. That's why you and I fail a tilt test. There is another name for it and a society that deals with it under the name dysautonomia. [ Definition: dys -something's wrong, autonomia the things your body does automatically.] Vanderbilt University has a good description of it and there's a national association devoted to helping people with it. Look it up. I have every symptom possible, but it's all under control and you can get there too.

First absolutely get yourself an automatic blood pressure cuff that you use on your wrist. Sleeves don't get in the way. They're probably cheapest online. Wear it so you can check your blood pressure when you have this feeling of fainting. AND when you're feeling well, so you can know what YOUR pressure needs to be. You can get one for less than $30. You just have to press a button, hold your wrist at heart level and keep your arm very still for the seconds it takes to register. They come with instructions. If you're feeling bad and your BP (blood pressure) is lower than it ought to be, drink at least a full pint of something. Carry water with you as if your life depended on it. You'll pee a lot, but that's a small price to pay.

Make an appointment very soon to have your thyroid levels - all 3 of them - checked. Your thyroid controls everything your body does and if it's not right, nothing else is going to be right. You need to have not just the TSH checked. That's all most doctors go by. It's not a thyroid hormone, and the "normal" levels are much too high for most people. It's a pituitary hormone that signals if you need more thyroid, if yours is too low. You need to know what exactly is low or high. You need tests on T4 and T3 hormones. Read a basic thyroid explanation on line - there are dozens - or at the thyroid section of this community.

The tests that give the most information are FT3 and FT4 , the specific (Free) part of the hormones that actually do the work. Your reaction to a hot room is definitely a thyroid issue. Go to the thyroid section of healthboards. I think it's listed under 'Other.'

Do you know why you are using a beta blocker? Maybe your heart rate is too fast. Beta blockers also lower your blood pressure, and yours is too low. Sodium and fluids help raise it. Gatorade is full of sugar and calories. With salt tablets you probably would do better on mostly water. Lots of water. Until you gurgle when you walk. I hate water, so I add Crystal Light to mine. I can't take midodrine because it raises my blood pressure too high when I lie down. As long as you are up and about it should help. I needed it most after a meal when part of my blood was diverted to my stomach.

That should get you started. Go online. When you are getting information online, go to professional or university sites, not commercial sites or Miss Susie type sites. There's a lot of mis-information, but there are also sites like this that are life-saving. And when a doctor tells you that you shouldn't be looking on line, tell him that he should be looking online too. There's a lot that's happened since he got out of med school.

Do all this and let me know how it goes. I care.

Anne

 
Old 09-30-2011, 01:21 PM   #10
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Re: how rare is neurocardiogenic syncope?

I think it is still pretty rare, however I think people are becoming more familiar with it. I was diagnosed several years ago and since then have heard of others diagnosed with NCS or POTS. My daughter has POTS.

 
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