Neurocardiogenic Syncope, The Invisible Illness That Changed My Plans
Jess explains how Neurocardiogenic Syncope, a rarely recognized illness, has changed her plans from what they once were. . . but why she believes there is hope through it all.
Jess Meek
I used to want to be a ballerina, dancing in the spotlight of a stage.
Then I wanted to be a musician, playing music all through the night.
The next dream was a mathematician, solving problems no one else could.
And finally I set out to be a Soundie, recording and editing sound for films.
Then before I could even realize, everything began to change.
The ballerina – she lost her balance.
The musician – she lost her rhythm.
The mathematician – well she could no longer count.
And the Soundie – well everything became a blur.
Finding out I had an invisible illness, Neurocardiogenic Syncope, has affected every part of my life, and the hardest part? No one can even see it.
Neurocardiogenic Syncope is an invisible illnes which no one has ever heard of. I get blank looks from people who I tell. How I explain it is that I constantly feel like I have a concussion, and like I have been sitting still for too long, but it won’t kill me.
It’s a pretty fundamental description of Neurocardiogenic Syncope, but it’s really all people want to hear. They don’t want to know how the blood is slowly pooling in my legs and not enough oxygen is reaching my brain, causing by body to shut down. I am lucky in this way; I hardly ever actually faint. But I do live constantly trying to make myself see through the concussion-like brain fog.
It’s a scary thing, brain fog. It can be as harmless as forgetting what you ate for lunch half an hour ago or as dangerous as driving towards a red light and not registering that you have to stop, and anywhere in between. Sentences and numbers become too complex, thinking of one word but saying another, mixing numbers around. Some days, normal conversations can be hard to understand, other days I seem to forget how to read more then a sentence at a time.
I was sick for over four years before I was finally given the diagnosis of Neurocardiogenic Syncope. I have been through so many different tests and been told I had so many different conditions. My life has changed completely.
Four years ago I was studying to work in the film industry and playing sport every other day. Now getting through a full week of work in a retail job is an achievement and the weeks when I can’t even manage that are the ones that really bring me down.
There is no cure for Neurocardiogenic Syncope. Treatments are mostly lifestyle and supplement based. Everything is in extreme moderation: working, socializing, sleeping, and eating. But this has made me find out the things that are really worth pushing through. When you need so much support around you, you find the friends who will always be there for you, and maybe someday I’ll get the chance to repay them.
I have an invisible illness, meaning that most of the time I just seem like a shy, quiet girl when I really feel like I could pass out.
Sometimes that seems like the perfect disguise but in reality it makes it so difficult for people to understand what is happening. There are good days and bad days; and it is a battle, but I don’t give up.
I have found once you can learn to accept the new limitations you have, the good days can become amazing and the bad days won’t matter so much anymore. I have felt this a few times and maybe one day I will truly get to this point.
It can seem impossible, but I believe life is worth it.
Jess Meek was diagnosed earlier this year with a fainting disorder after dealing with the symptoms for almost 5 years. She has spent this year adjusting to living life around this illness and it is a constant battle. Jess believes that there are moments in life that are worth all the pain and struggling it took to get there, and thats what she seeks now.
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Thank you so much Lisa for posting this article and thank you Jess for sharing this part of your life. I too have Neurocardiogenic Snycope/Dysautonomia and your description is perfect. Unfortunately, if I do not pay attention to the brain fog and the symptoms you listed I will pass out. I have spent too many hours on the ground wondering what happened when I come to. Mostly, I just “gray out” instead of black out. I can’t tell you how this has helped me today to just know that someone really understands this invisable illness. Thanks again and I pray you will be blessed today.
Hey Leanette,
Thanks for your response, I have never met anyone with this condition and it is so comforting to hear that someone is experiencing the same! I hope that you continue to find encouragement from this website, other blogs and internet resources. Praying for healing, comfort and peace. Jess.
Thank you for sharing your story. I was diagnosed with neurocardiogenic syncope about six years ago. It’s no fun.
Neurocardiogenic Syncope was the first diagnosis I was given way back in 2007 before things progressed. Jess’s… http://t.co/lx09zCno
thank you for your very detailed and spot on description. I think too many people don’t understand how horrible it is to live with this illness. Another thing that is very bad with this illness for some is the daily dizziness, that no matter what you do the dizziness will not go away. Adding that with the symptoms you spoke about makes it so hard to live a normal life and because it is not a well known illness people just brush it off. Thank you so much for writing this! I hope more people will learn about this illness and spread awareness!
Agreed Joy, The dizziness makes it seem unbearable somedays. I am lucky I don’t get this as often, i feel for you and all who do. Awareness is everything, having people around you who know what it can do to you make things so much easier. Even if they have just heard of it before!
I have neurocardiogenic syncope/dysautonomia, but at my worst, I was fainting multiple times a day. I got a pacemaker, and for a whole year I had to wear a helmet (after I obtained my 13th concussion). In the helmet, people assumed so much and understood so little. There is nothing wrong with my mind in the sense that I am intelligent and social and all of those types of things. I received a cardiac-alert service dog a little over a year ago, and she has changed my life. I have not fallen because she warns me in time that I can lay down before I would pass out. I don’t have to wear the helmet anymore. But now people make new and still incorrect assumptions because they are afraid to ask or don’t care enough to know that I am not blind, not training my dog, and still am fully capable of an intelligent conversation.
Thank you for sharing your experience with neurocardiogenic syncope, and realize that you are NOT alone. I felt alone for a very long time, but thats just another assumption!
I was diagnosed with NCS when I was 17; no one knew what it was. After dropping my BP to 50/30 and fainting during school, while waiting to make sure I was okay in the ER, my mom and I decided I needed to see a specialist. Luckily for us, AI DuPont Hospital for Children is 20 minutes away, and the Cardiac Center had a doctor who had been trained at Johns Hopkins on NCS! I failed my Tilt Table, and was promptly diagnosed. We tried meds, diet, everything- nothing really made a difference.
I fainted and was transported to college 22 times my freshman fall semester alone (and there were more times I fainted and wasn’t transported). I had medics jeer at me, thinking I was drunk because I had expressive aphasia after an episode. When I fainted and was transported in my Physiology class, and then had to do a presentation on a disease or disorder, I did mine on NCS… hoping and trying to educate the students on what had happened.
I was lucky; I outgrew my NCS by the time I was 22. Unfortunately, I was diagnosed with RSD/CRPS when I was 20, so I have been living with another Invisible Illness as well. Keep educating others- that’s the only way to get the word out. And if you ever need a friend, I understand and would love to hear your story. Best of luck :)
I also had professors yell at me while I was in class, thinking I was chatting, when I was really telling the person next to me I was going out- and then I would faint, to the horror of the professor. During a midterm, we were told not to raise our hands to ask any questions at all- so when I raised my hand, I was ignored. I then vaguely remember the professor screaming not for me to talk to the person next to me before I went out. He never even acknowledged I had fainted. I fainted in the middle of my math final, and stopped breathing- luckily, an EMT (someone I knew actually!) was in the same class. He was able to give rescue breathing and revive me before the ambulance got there.
We worked with the ADA office on campus. They were wonderful; for the most part, my professors were understanding and concerned. After the math final, I was able to take any tests in the ADA office, where I was allowed unlimited time, frequent breaks, snacks and drinks, etc (we discovered that I didn’t do well under pressure, and that’s why I fainted during tests). Working with the ADA helped ALOT. I was able to have classes moved to a location that was ambulance and stretcher accessible.
I added this so that others know that you do have support out there for this rare disorder. There are advocates who are ready and willing to help, however they can. If you are in college, contact Student Life or the ADA office- they should have one. It will help. Trust me, I know.
Thank you SO much for writing this! I was just diagnosed with NCS a couple of weeks ago. This has been a HUGE change for me. I was very type-A, working full time, etc. Now, I’m struggling and lost my job because I wasn’t well enough to return and I was not covered by FMLA.
This was so totally unexpected, and my head is still spinning going from doing well to being home and struggling medically. I really appreciate hearing from someone else with this disorder.
Thank you for sharing your story. I have recently met a wonderful man who has been diagnosed with NCS. I’ve been reading everything I can find about NCS so that I can better understand what he goes through on a daily basis. I want to be a support system for him. Your story is inspiring to me. I feel that I have a better understanding of how he feels. Thank you again for sharing.
I got diagnosed with NCS at Vanderbilt in 2010. Years before being diagnosed I thought I must be dying of …. something. I had gone to family docs, internists, cardiologist, ENT, neurologist without any answers. I have never passed out but have come really close. The brain fog is incredibly annoying. It is challenging to say the least when it comes to my job. I’m a clinical pharmacist at a hospital. There is no room for error. It’s not like I can tell my boss or co workers that I have days where I can’t think! My IQ and my social interaction is dependant on my blood pressure…… How ridiculous.
Thank you to everyone, especially Jess, for shaing your stories. It is comforting, in a morbid way, to know that others share such a frustrating diagnosis.
I am a mother of 2 swimmers, ages 11 and 12. I have always had low blood pressure, but never passed out until I was pregant with my 11 year old. When he was 2, I was diagnosed with Chronic Lyme Disease, and now Lyme induced Firbomyalgia. A little over a year ago, I began having events that are now classified as syncope and pre-syncope. Having kids is always a challenge, but their participating in a sport that makes my condition worse: hot, humid air and sitting for long periods has taken its toll on me. Most of my friends are aware that I have an illness and are very understanding when I am not at a meet or when I suddenly, with slurred words, tell them I am about to go down. Luckily I have a 10-15 second warning before the world turns black. Though it can be downright embarrassing, the worst part is that I feel I am letting down my kids when I have to miss a meet.
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Jess,
your story is very inspiring too me. I hope all is going well for you. i have not been diganosed with NCS but i have been experiencing syptoms of it. I am 19 years old, I used to be active and play soccer until i got pregnant, i was most healthy while pregnacy and never came across problems. My daughter is now 3 yrs old and i have had several full on black outs since she has been born. One minute i will be fine, next second i wont have a clue on what is going out or who anyone is at all i cant inhale but i can still exhail i get extremely hot and start to sweat. Im not sure how long i am out for but when i wake up i always vomit imiately after a faint. I also have been suffering from extreme migraines. Every time i have been rushed to the ER they admit me and put a monitor on me.. they all say normal including my EKG, CT, blood work ect.. all doctors have told me to wear the compression socks bc my blood pools to my legs when i stand causing so much lightheadedness. They also say im dehydrated and need to increase my salt intake, was curious if anyone has had these same problems? how should i be tested for NCS?
Add.. i also have really bad heart/lung cramps to where i feel like i cant breathe (i am not a smoker) Do you think this is related to NCS?
Chelsie consider going to a place like Vanderbilt autonomic dysfunction clinic for a diagnosis. I went there myself. Most Dr.’s have no clue with this. If in fact you do have NCS then you cannot ever get dehydrated. I wear compression stockings and it helps somewhat. I find that a ton of water every day and yes increasing your salt intake will probably help you most. The salt constricts your vessels to allow for your brain and heart to get some oxygen. I have had the chest pain as well. I think I remember reading that it is totally benign…. something about a left right sided pressure differential. I’ve never blacked out completely thank goodness but have come really close many times. Hang in there.
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