I have been diagnosed with NCS and have tons of constant symptoms including a lot of POTS like symptoms, but I never actually fainted before but many times I nearly feel like I fainted, its so scary, and theres not much i can do to make these symptoms go away besides laying down in a dark cold room, I would like to see more videos on this and how NCS is not just "fainting" theres many other things to go along with it, thank you!
I couldn’t agree more. It’s not like fainting. It’s like someone turns the lights off slowly and it’s incredibly uncomfortable. I often come out of a fainting episode and am sick for a few hours 🤮
I’ve had NCS since I was a baby, I’m now 25. I was misdiagnosed with a seizure disorder for 22 years because it presents as one when I pass out and have an episode. Definitely refreshing to hear about others with it, hear people talk about it and inform! Thank you♥️
I have this as well! It was truly a scary test when you didn't know what may happen. People did not believe me and thought I was faking as well. It was so frustrating trying to get others to understand. I pray I can stay normal.
Hi Rachel! Unfortunately this seems all too common. It seems that because our illness is invisible and we see people the few times we feel up to it, that they can’t fully understand that we experience these all of symptoms too. Wishing you the best on your health journey. 💙
@@DysautonomiaInformationNetwork you are so right! I’ve even been accused of faking before!! It took months to get diagnosed and it’s so disruptive. I truly appreciate you helping to bring awareness. Wishing you the best as well.
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences
@@penniesfromheavon Hi, how are you? I have NCS also and it is crippling at times, the Nausea oh boy. How are you going with it? Any better? Would love some feedback thanks heaps!
@@jaguar813 hello! I’m doing about the same. The biggest thing is learning your triggers, recognizing when you about to collapse…lay flat, elevate feet and stay down until u can safely get up. It’s embarrassing at times because mine come on suddenly and I have to literally lay in the floor at the grocery store etc. I was gifted a fully trained service dog who is able to warn me at least 3~5 min prior to collapse which has been a massive help. Just stay strong, know your signs and act accordingly. Helpful tip: I spoke with all the local stores I go to regularly and they all know if I go down NO AMBULANCE… let ppl around u know what’s going on. I hope you can learn to manage (it took me two years) and just know that you can live a pretty normal life. 🙏
I’ve had episodes my entire life and I was finally diagnosed with NCS yesterday after a tilt table test. That title table test was an awful experience. I passed out almost the second they stood me up, but at least I finally have a name for what I have. Do you know if people with NCS tend to have other Dysautonomia issues too? I know I’ve had a lot of weird symptoms that nobody can explain or they act like they’re all in my head because they do blood work and nothing is too off other than my MCHC being low and my glucose being slightly elevated. If so, what kind of doctor would I see? Is this something my cardiologist can help me with? I’m so new to this, I don’t know where to go from here. I just want these symptoms to stop so I can enjoy my life.😭
The TTT is often a very uncomfortable, even scary test to go through but it is the best way to diagnose NCS and the first step to feeling better is knowing what you have. So I'm glad that you finally have a diagnosis. There is an article on our site that discusses the symptoms and treatments for NCS. You can also find more information about dysautonomia in general on the site. www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/ You might also want to consider joining our patient forum. Being able to connect with other people that have NCS within a moderated setting, can be a great first step to managing your symptoms. Best of luck and we hope you find relief from your symptoms soon.
Hi. All sympathy! I'm probably your grandmother's age, but since I've had this for more than 20 years;, there's a few things I can tell you that may help. One, all the doctors will tell you that there is no ''magic bullet''--a pill that will stop it. You can get a lot of information online, and I found an online support group very, very helpful. (In Yahoo) Also one on Facebook. You are not alone! There's a group in England, STARS, about this. (''Twiggie'' has it, and Rodger Moore!) I've managed to do many things in spite of the problems, which are not life-threatening (except maybe from falls), but can be difficult. It's important that family understand that this is serious. You need to identify your ''triggers''--what makes it start: dehydration (even slight)--drink a lot of water, exercise (usually just after), hot weather--and lots of individual things, like stress. Don't get discouraged. There is plenty on the web and many doctors who can help. In spite of the same problems you have, I've done a second degree, lots of art shows (I'm an artist), and done a lot of teaching. I have two children and 6 grandchildren! The family understands the problems, and I have a few women friends who understand well, too, and I've traveled with them and my husbands and had many lovely trips. So you'll still enjoy your life, really, but these problems are no joke and you will have to manage it well. Good luck! I see you have a good sense of humor, and that will be extremely helpful!
I have, Sweating and feeling hot while standing (mainly while shopping), Stomach issues, Shortness of breath, Heart Arrhythmia, Dizziness, Vertigo, Blood pressure drops, Rapid heart rate/slow heart rate, Near fainting, I can’t stand the slightest warm temperature, I can’t do strenuous exercise, I can’t do lots of ups and downs. Major fatigue episodes and brain fog. Tremors And when passing out: vision and hearing will go out. Tricks: Stay cool, Stay hydrated, Put your head between your knees, Use compressionsocks, Put coldness on your face and behind knees. Feeling faint? Lay down, bend the knees or elevate feet. Do the rowing exercise. Some doctors have medication. I personally don’t want to mess with my body, particularly since I know how it works right now and I know how to deal with it. Make sure you have enough salt and electro lights. Force yourself to breath slower-helps with heart rate. Only my doctor who’s known me since birth believed me immediately. I had to convince the cardio to have a tilt table test done. Came back positive for NCS/Vasovagal Syncope.
I feel the same.... everyone tells me I have anxiety... idk what to do I just cry and wish this ends... I left school. For five months, especially first 3 months had severe symptoms not only fainting my whole body is effected having g arrythmia, tachycardia.. so many symptoms I can't even name. The only thing that helps a little is lots of rest and cold showers. If I exercise a Lil my symptoms gets worse and I would be in bed for days😢😢
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences.
Yes, dysautonomia is an umbrella term for many disorders that involve the dysfunction of the autonomic nervous system. NCS and Vasovagal disorders fall under this term. We are happy to hear that the video was helpful. Take care.
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences
I just had an episode that the Dr said was Presyncope. When it hit me, my arms, upper chest, face and entire head felt really, really hot like when you get embarrassed but a hundred times hotter. It hit me all of a sudden and my upper body was the only part that was affected and my arms and head felt so HEAVY....!!!!! My lips and my tongue felt like they were ten times the size they actually are and they also started to tingle. My teeth were numb as well. I haven't seen anywhere where these are the symptoms of Presyncope or Syncope or Vasovagal. I was on the floor but I didn't pass out or faint. I was conscience but couldn't talk to answer EMT's questions. My symptoms seem to be different from what I've read about this but the Dr. said it was Syncope..... Can I get some clear info on what my symptoms may be ?
@@leojr.dotson8690 Hi Leo, A doctor would need to do a series of tests to establish which disorder is causing you the most symptoms. But it is very common for people with autonomic disfunction to have more than one disorder. So it is possible for you to have symptoms of both NCS and POTS. Usually POTS is the one that causes a jump in HR within 10 minutes of standing. The usual rise in HR is 30 bpm In NCS it can be common for a drop in BP and HR upon standing - but that only occurs for some people. A doctor would need to look at all your symptoms and do testing to give you a full diagnosis. We wish you the best of luck.
@@leojr.dotson8690 The characteristics of NCS is a drop in BP and a slowing of the HR. You can read more about the symptoms on our site and also from the list of links we have published. www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/
Bruh, what's the difference between NCS and Vasovagal Syncope? I'm searching for VS video and yours showed up and I'm like, "wuutt, now I'm confused.." *lol*
@@ashlynnwatkins6855 yes, that's exactly what I thought.. but then I'm like, or is it? 🤔 Now mind me asking, are you sure on that, that they're the same thing (identical in meaning) or are you're just making an assumption just like I did?
Vaso (Dealing with the blood vessels) Vagal (Dealing with the Vagus Nerve) Neuro (Dealing with the brain / neurons) Cardio (Dealing with the heart) Genic (Originating from) Syncope (The action of fainting) Vasovagal means it's an issue dealing with oxygen delivery to the rest of your body, and it has to do with your blood vessels expanding while your heartbeat counts per minute start dropping. Neurocardiogenic means that the signal to expand the blood vessels and slow the heart rate is originating as a command from the brain, rather than being simply due to chronic low blood pressure, if that makes sense.
POTS also has strict diagnostic criteria, whereas NCS does not. Think of POTS as a condition, but NCS as an action. Not everyone has POTS, but anyone can experience an episode of NCS.
@@reneedubuc3712 does this mean NCS is not a condition but rather a symptom? and if so why are so many people told they have NCS instead of investigating why?
@@KennM12 Good question. NCS is not a condition. It can be a symptom, but it can also happen without being a symptom of anything. Why do so many people experience it and doctor’s give them no help for managing it? Beats me.
im 61 and have had this since i was 18 ....and im a marathon runner but feel "it" often and ive been told its triggered by panic attacks....vicious circle....im afraid of the fainting and thats why I panic or vice versus?
I have been diagnosed with NCS and have tons of constant symptoms including a lot of POTS like symptoms, but I never actually fainted before but many times I nearly feel like I fainted, its so scary, and theres not much i can do to make these symptoms go away besides laying down in a dark cold room, I would like to see more videos on this and how NCS is not just "fainting" theres many other things to go along with it, thank you!
exactly. i dont have episodes. i feel terrible constantly . mostly bed bound.
I couldn’t agree more. It’s not like fainting. It’s like someone turns the lights off slowly and it’s incredibly uncomfortable. I often come out of a fainting episode and am sick for a few hours 🤮
I’ve had NCS since I was a baby, I’m now 25. I was misdiagnosed with a seizure disorder for 22 years because it presents as one when I pass out and have an episode. Definitely refreshing to hear about others with it, hear people talk about it and inform! Thank you♥️
We are so glad you find the info helpful. Best of luck.
I have this as well! It was truly a scary test when you didn't know what may happen. People did not believe me and thought I was faking as well. It was so frustrating trying to get others to understand. I pray I can stay normal.
I was recently diagnosed with this and it has disrupted my life in so many ways. Ppl just don’t understand.
Hi Rachel! Unfortunately this seems all too common. It seems that because our illness is invisible and we see people the few times we feel up to it, that they can’t fully understand that we experience these all of symptoms too. Wishing you the best on your health journey. 💙
@@DysautonomiaInformationNetwork you are so right! I’ve even been accused of faking before!! It took months to get diagnosed and it’s so disruptive. I truly appreciate you helping to bring awareness. Wishing you the best as well.
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences
@@penniesfromheavon Hi, how are you? I have NCS also and it is crippling at times, the Nausea oh boy. How are you going with it? Any better? Would love some feedback thanks heaps!
@@jaguar813 hello! I’m doing about the same. The biggest thing is learning your triggers, recognizing when you about to collapse…lay flat, elevate feet and stay down until u can safely get up. It’s embarrassing at times because mine come on suddenly and I have to literally lay in the floor at the grocery store etc. I was gifted a fully trained service dog who is able to warn me at least 3~5 min prior to collapse which has been a massive help. Just stay strong, know your signs and act accordingly. Helpful tip: I spoke with all the local stores I go to regularly and they all know if I go down NO AMBULANCE… let ppl around u know what’s going on. I hope you can learn to manage (it took me two years) and just know that you can live a pretty normal life. 🙏
I’ve had episodes my entire life and I was finally diagnosed with NCS yesterday after a tilt table test. That title table test was an awful experience. I passed out almost the second they stood me up, but at least I finally have a name for what I have. Do you know if people with NCS tend to have other Dysautonomia issues too? I know I’ve had a lot of weird symptoms that nobody can explain or they act like they’re all in my head because they do blood work and nothing is too off other than my MCHC being low and my glucose being slightly elevated. If so, what kind of doctor would I see? Is this something my cardiologist can help me with? I’m so new to this, I don’t know where to go from here. I just want these symptoms to stop so I can enjoy my life.😭
The TTT is often a very uncomfortable, even scary test to go through but it is the best way to diagnose NCS and the first step to feeling better is knowing what you have. So I'm glad that you finally have a diagnosis. There is an article on our site that discusses the symptoms and treatments for NCS. You can also find more information about dysautonomia in general on the site. www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/ You might also want to consider joining our patient forum. Being able to connect with other people that have NCS within a moderated setting, can be a great first step to managing your symptoms. Best of luck and we hope you find relief from your symptoms soon.
Hi. All sympathy! I'm probably your grandmother's age, but since I've had this for more than 20 years;, there's a few things I can tell you that may help.
One, all the doctors will tell you that there is no ''magic bullet''--a pill that will stop it. You can get a lot of information online, and I found an online support group very, very helpful. (In Yahoo) Also one on Facebook. You are not alone!
There's a group in England, STARS, about this. (''Twiggie'' has it, and Rodger Moore!)
I've managed to do many things in spite of the problems, which are not life-threatening (except maybe from falls), but can be difficult. It's important that family understand that this is serious.
You need to identify your ''triggers''--what makes it start: dehydration (even slight)--drink a lot of water, exercise (usually just after), hot weather--and lots of individual things, like stress.
Don't get discouraged. There is plenty on the web and many doctors who can help. In spite of the same problems you have, I've done a second degree, lots of art shows (I'm an artist), and done a lot of teaching. I have two children and 6 grandchildren! The family understands the problems, and I have a few women friends who understand well, too, and I've traveled with them and my husbands and had many lovely trips.
So you'll still enjoy your life, really, but these problems are no joke and you will have to manage it well.
Good luck! I see you have a good sense of humor, and that will be extremely helpful!
I have,
Sweating and feeling hot while standing (mainly while shopping),
Stomach issues,
Shortness of breath,
Heart Arrhythmia,
Dizziness,
Vertigo,
Blood pressure drops,
Rapid heart rate/slow heart rate,
Near fainting,
I can’t stand the slightest warm temperature,
I can’t do strenuous exercise,
I can’t do lots of ups and downs.
Major fatigue episodes and brain fog.
Tremors
And when passing out: vision and hearing will go out.
Tricks:
Stay cool,
Stay hydrated,
Put your head between your knees,
Use compressionsocks,
Put coldness on your face and behind knees.
Feeling faint? Lay down, bend the knees or elevate feet.
Do the rowing exercise.
Some doctors have medication. I personally don’t want to mess with my body, particularly since I know how it works right now and I know how to deal with it.
Make sure you have enough salt and electro lights.
Force yourself to breath slower-helps with heart rate.
Only my doctor who’s known me since birth believed me immediately. I had to convince the cardio to have a tilt table test done. Came back positive for NCS/Vasovagal Syncope.
I feel the same.... everyone tells me I have anxiety... idk what to do I just cry and wish this ends... I left school. For five months, especially first 3 months had severe symptoms not only fainting my whole body is effected having g arrythmia, tachycardia.. so many symptoms I can't even name. The only thing that helps a little is lots of rest and cold showers. If I exercise a Lil my symptoms gets worse and I would be in bed for days😢😢
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences.
Great video! Just diagnosed with neurocardiogenic syncope/vasovagal syncope today after a tilt table test, is this the same as dysautonomia? Thanks 😊
Yes, dysautonomia is an umbrella term for many disorders that involve the dysfunction of the autonomic nervous system. NCS and Vasovagal disorders fall under this term. We are happy to hear that the video was helpful. Take care.
I have it too, I was finally diagnosed at 19, after passing out unexplainably for years, and I'm 26 now. I also have a lot of symptoms similar to pots & other dysautonomias. I've found groups on facebook extremely helpful for gathering info from others' experiences
I just had an episode that the Dr said was Presyncope. When it hit me, my arms, upper chest, face and entire head felt really, really hot like when you get embarrassed but a hundred times hotter. It hit me all of a sudden and my upper body was the only part that was affected and my arms and head felt so HEAVY....!!!!! My lips and my tongue felt like they were ten times the size they actually are and they also started to tingle. My teeth were numb as well. I haven't seen anywhere where these are the symptoms of Presyncope or Syncope or Vasovagal. I was on the floor but I didn't pass out or faint. I was conscience but couldn't talk to answer EMT's questions. My symptoms seem to be different from what I've read about this but the Dr. said it was Syncope..... Can I get some clear info on what my symptoms may be ?
I have vasovagal syndrome. Is it the same?
Yes, they ae the same. It is also sometimes called Neurally Mediated Syncope.
Got this after the covid vaccines
is heartrate supposed to increase upon standing if you have ncs?
mine gets high upon standing an my diagnosis is ncs
can u have ncs and pots? if so do you tell them apart
@@leojr.dotson8690 Hi Leo, A doctor would need to do a series of tests to establish which disorder is causing you the most symptoms. But it is very common for people with autonomic disfunction to have more than one disorder. So it is possible for you to have symptoms of both NCS and POTS. Usually POTS is the one that causes a jump in HR within 10 minutes of standing. The usual rise in HR is 30 bpm In NCS it can be common for a drop in BP and HR upon standing - but that only occurs for some people. A doctor would need to look at all your symptoms and do testing to give you a full diagnosis. We wish you the best of luck.
@@DysautonomiaInformationNetwork thank you so much for replying to my message
you said its common for people to have drop in blood pressure and heart rate,is it also common to experience a rise in heart rate in NCS?
@@leojr.dotson8690 The characteristics of NCS is a drop in BP and a slowing of the HR. You can read more about the symptoms on our site and also from the list of links we have published. www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/
Bruh, what's the difference between NCS and Vasovagal Syncope? I'm searching for VS video and yours showed up and I'm like, "wuutt, now I'm confused.." *lol*
Neurocardiogenic Syncope and Vasovagal Syncope are different words for the same thing.
@@ashlynnwatkins6855 yes, that's exactly what I thought.. but then I'm like, or is it? 🤔
Now mind me asking, are you sure on that, that they're the same thing (identical in meaning) or are you're just making an assumption just like I did?
Yes, neurocardiogenic syncope is the same as vasovagal syncope. Mayo Clinic confirms it.
Vaso (Dealing with the blood vessels)
Vagal (Dealing with the Vagus Nerve)
Neuro (Dealing with the brain / neurons)
Cardio (Dealing with the heart)
Genic (Originating from)
Syncope (The action of fainting)
Vasovagal means it's an issue dealing with oxygen delivery to the rest of your body, and it has to do with your blood vessels expanding while your heartbeat counts per minute start dropping.
Neurocardiogenic means that the signal to expand the blood vessels and slow the heart rate is originating as a command from the brain, rather than being simply due to chronic low blood pressure, if that makes sense.
how is this different than POTS
With POTS the heart rate rises where it typically does not with NCS/VVS.
POTS also has strict diagnostic criteria, whereas NCS does not. Think of POTS as a condition, but NCS as an action. Not everyone has POTS, but anyone can experience an episode of NCS.
@@reneedubuc3712 does this mean NCS is not a condition but rather a symptom? and if so why are so many people told they have NCS instead of investigating why?
@@KennM12 Good question. NCS is not a condition. It can be a symptom, but it can also happen without being a symptom of anything. Why do so many people experience it and doctor’s give them no help for managing it? Beats me.
Its the same thing
im 61 and have had this since i was 18 ....and im a marathon runner but feel "it" often and ive been told its triggered by panic attacks....vicious circle....im afraid of the fainting and thats why I panic or vice versus?
Fellow marathon runner who just got diagnosed! Have always been a fainter but thought it was just hydration! Are you still able to run long distances?
@@JK-rt1gy yes running seems to help immensely
👍
Thank you. We hope it helps. Take care.
Now that’s a mouth full...that’s what she said 😏😂