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I was diagnosed with neurocardiogenic syncope through a failed tilt table test in 7 minutes flat, in November 2007. I also have struggled with the same symptoms as many of you have. Fainting episodes, extremely low blood pressures, dizziness, nausea, excessive urine output, sweating, weakness exhaustion, and an inability to do much physically – yet I’ve been strong enough at times to help my husband with cutting fire wood and stacking it for the winter and other farm work. I too have had times when driving to or from work of finding myself in an area that I had no recognition of how or when I got there. Scary! I’d like to share the things so far that have helped me to be able to get out of the bed and function. Let me say – I NEVER feel back to normal – but – I can function somewhat again. And, I’d rather “function sorta” than be stuck in the bed for months as I was in the fall of 2007, and many times since. I also experience odd periods of racing heart and irregular heartbeat, and severe sick burning headaches at the base of the brain where the spinal cord joins.
Since 11/2007, I’ve been begun on one medication at a time, up till today I’m currently taking Norpace CR 100 mg 2xday (8am & 8pm) (for regulating my heart beat), Midodrine 2.5 mg (7am,11am,3pm,) (and 7pm when having a busy evening out) to get my blood pressures up for four hour intervals, Metoprolol Tartrate 25 mg 2@ noon (for chest pain), Florinef 0.1 mg (6pm) (to keep my pressures up during the night when I’ve had several fainting episodes). My cardiologist also recommended that I should drink electrolyte replacement drinks, and said Powerade is actually better than Gatorade for what the kidneys need in keeping minerals and volume. As I’ve gained weight during these long months of being down without enough exercise – I look for the Powerade Zero for no calories, or Gatorade G2
My cardiologist is excellent and understands dealing with this specific problem. Like many of you, since 1994, I’ve had numerous batteries of heart tests and nothing other than mitral valve prolapse (also called a “click murmur”) had ever been found. If anyone would like to have the doctor name and phone number I’d be glad to pass it along, he’s really helped me more than any other doctor. One thing he has related concerning this malady we suffer with – it is exacerbated by emotional distress and rigorous physical activity. If you’ve had a lifetime of heavy stress levels like many of us have in this day and age, this autonomic system failure is more prone to cause episodes even out of bad memories or thoughts of worrisome stuff.
In addition to what the cardiologist has prescribed and suggested, I’ve read a WHOLE lot of information on neurocardiogenic syncope and orthostatic hypotensin, being desperate after weeks and months stuck in the bed. I’ve found some simple helpful ideas I’d like to pass along. There is pooling of blood in the lower abdominal area and in the lower extremities. The article suggested helpful “fix-it” said compression on the legs is good. When I know I’m going out for several hours (even in the heat of the south) I wear support hose to help keep my pressures in the upper body area (hopefully some of it gets to my brain;-) For men, you might consider spandex exercise shorts (and girdle or spandex shorts for women) which would provide some compression to the area where pooling takes place.
I’ve learned what my own body feels like with this pooling of blood, in that, there is a sensation of crawling under my skin, not really an itch – but a very weird feeling. When I feel the pooling of blood, OR, when I’m out of the house and feel that all-too-familiar sicky feeling of nausea coming on, OR, when I feel that sudden drop of pressure like my head is in a vice – I’ve learned right where I’m at to tense my upper leg muscles repeatedly, and tighten my stomach muscles repeatedly. Sometimes I hold the tension for a few seconds before letting the muscles relax. Believe it or not – I’ve been able to come out of many episodes that would’ve put me straight in the bed for days a couple of months ago. This tensing of the lower muscles really DOES push the blood back up to the brain area where the brain is starved for oxygen and blood flow.
I’ve had a LOT of difficulty standing for the duration to take a shower, so my husband built a seat for me that spans the width of the bathtub. I don’t even bother with trying to stand anymore because it’s cost me too many events I couldn’t attend by the time I got cleaned up! Check any thrift store you can buy bathtub seats and it will help!
I’ve found that a reason for the really sick burning headaches at the base of the brain just where the spinal cord joins, is that when lying flat down in the bed there is spinal fluid regurgitation which means the constant fluid pressure is not being maintained in the brain and it is seeping back into the spinal cord area. The suggested very simple “fix-it” was to lie on a wedge for elevation with my own pillow on top of that. It took some adjusting to but I’ve only had 2 headaches in 30 days and neither of those were the throw-up kind.
One last helpful thing I’ve learned is this: when I awaken each morning – usually my heart is racing. I just stay lying down still until it settles which takes about 20 minutes or more. Then I can get up without having the whole passing out thing to start the day. In the night when I need to go to the bathroom I also sit on the side of the bed for several seconds until I feel stable enough to stand up. It has helped alleviate many fainting spells.
I hope these ideas will help somebody out there. Lots of prayers to God have been offered for help, and for guidance to find the right doctor, and further helps to make my body function to the extent it can. I’m very thankful for these many varying tidbits that help me live out my days! Believe me, I do know what you’re experiencing physically and the frustration of trying to function to even a mild extent in life. No more nautilus work-outs or hiking in the mountains or even bicycling for me! It’s a difficult task to hang onto the treadmill handles and eek out 10 minutes at the slowest pace these days. The medicines alone will not do the trick. The (2-3 a day) Powerade is ESSENTIAL for my functioning! But, next is the muscle tightening which really has made a BIG difference in me being able to go out in public for an afternoon of shopping or a ride in the Smoky Mountains. Now I can enjoy it, AND actually get out of the car and walk in a restaurant or store without having to wait out in the car because I didn’t have the strength to go in.
Although I take the medication and eat more then my taste buds will allow in salt (sometimes drinking pickle juice to help) and I drink fluids and do the muscle movements that everyone here seems to talk about, somehow it doesn't seem to work. I have seen both a neurologist and a cardiologist and without fail it seems that everyone in the medical community that i have seen has taken my condition as if it were a common cold.
Now, i don't know about any of you, but my passing out spells can be up to 6-10 times a day if i don't take the medication and up to 2 times a day on the medication. I have passed out driving down the highway going 70mph and had several times where i can't even get off the couch because of my passing out spells.
My cardiologist made me move back home with my parents so i could be watched closer and have someone to drive me around. Again, I AM 20! I have had to completely learn how to relive again because nothing i do ever seems to be allowed by my issue. I was a student athlete (polevaulting), a volunteer, i worked three jobs during the summer, and i was an art major in college. I somehow managed to loose my entire life in one cardiologist visit it seemed.
I feel like most people here talk only about there symptoms and never about how it emotionally effects people to feel like no one takes their condition seriously or that you can no longer work or exercise like you would like to because of the condition, however, i am fully aware of how things feel! I know how stressful all of it can be, worrying about paying bills because you can't work, worrying about how you can even get a job if you don't have a degree, feeling like a failure because you are unable to do the things your peers are doing, being limited when you were never as limited before, and simply feeling stressed out just because you have a health condition that no one can fix. After awhile you get sick and tired of dealing with it, which has happened to me. I have only been diagnosed for two years and already I am ready to give up on even worrying about having a health condition.
The only problem is: should i risk my life to live my life?
I am still fairly young and I can still wait a few years before having children, but how long am i going to have to deal with taking four pills a day and relying on my boyfriend to take care of me after i have passed out in his shower? How long is it going to be before i have a time where i don't have to take medicine and i can go back to being the non-pill taking hippie kind of girl i was? I would like to have children one day and the question isn't whether or not i can but simply when can i get my condition stable enough that i can even think about going off the medicine?
I feel like the biggest issue that i have isn't the problem itself but just a problem with stress that i can't seem to escape! we live in america for peets sake! there isn't a more stressful place on earth. we constantly have to worry about petty stuff that shouldn't even matter but is elevated by the little stresses we feel in life, like being called "sick". To me it seems unfair, however, life isn't fair.
I just got back yesterday from a two month long vacation in costa rica. i took that time to try and relax and see the world in another light because positive pollys always win in my opinion. i learned that not only is it a bad thing to have a "sickness" but it is also one of the hardest most frustrating things in the world. Although it's hard to admit that there can be some good to being sick and usually hearing someone say that makes me want to punch them, i will say that i too realize that there is some good to having this illness. Not only have i learned more about my body but i have learned more about dealing with hard situations and living through them. passing out 6-10 times a day is not easy nor is it fun or comfortable on the head, but i know more about my body now and what my body needs at all times more then anyone i have ever met. i know when too much is too much and when too little isn't enough. exercising daily has always been a huge thing for me. i have always worked out five to six days a week and trained most of the year to be a great college athlete, however, i can no longer do those things, at least not for awhile.
i will say that having this issue has had it's rough times and that it will always be rough and no one will ever really understand how you feel or what you are going through but you just have to keep pushing through life with a smile on your face and realize that you have the illnesss, it does not have you. Simply realize that it can not rain everyday. Sun, wind, water, and just pure life are all the ingredients to make a flower grow and shine. Life is hard and it will always beat you down but sometimes you have to get up out of bed and think to yourself "if a butterfly can fly halfway across the world and be beaten by everything including life and still have beautiful wings, i can too."
I was diagnosed with NCS six and a half years ago and the first few years were awful. I would pass out everywhere and the sad part is that there is no rhyme or reason for when the episodes come on. The Midodrine made my blood pressure go out of control and they replaced it with Florinef which has steroids. I have gained weight and have no energy to do anything and that was never me. I have, however, learned tricks to know when the eposides are coming on and can deal with them better. It just takes time for you to learn to recognize it in yourself. First I learned to be aware of my body and how it feels. I know when I feel the warmth come over me my blood is beginning to pool and I lie down, no matter where I am, and elevate my legs. Within a few minutes I start to feel better. Also, I drink a lot of SmartWater because it has electrolytes and no calories. I am on a high protein and fiber diet. I try not to eat too many carbs because that seems to set off the episodes as well. I also have an NCS emergency pack in my car with a bottle of SmartWater, salt packs, smelling salts and a slim jim. These things in a pinch seem to help. I've also noticed that my nephew is having a lot of the same symptoms and have urged my sister to take him to get tested. There is no doubt that this is hereditary. I do understand your frustrations with the doctors treating it as if it's not that serious when in fact it is. I have passed out and have had concussions and have hurt myself on several occassions. Driving is always a challenge because you don't know when the symptoms are going to come on and you will have an episode. I suggest get to know your body and you will know how to manage this better for yourself.
Good luck to all of you and all the best. My prayers are with everyone who suffers from this.
i have to say it is possible tho no dr can confirm or deny.
My mother and I have had all our lives; back then drs thought we were just nervous nellys who fainted. Wasn't until EMT and ER staff witnessed several episodes that we was taken seriously. My brother had symptoms for a brief period in his early 30s but none since, he's now 42. I pray he doesn't get full blown case and that if it's in our genes that my niece and nephew don't get it. - wishing you the same!
I have neurocardiogenic syncope, I was diagnosed after I had both of my children. My son is 15 and was diagnosed when he was 10. He started out very mild but now is very severe, he is on 8 pills a day plus they had to put in a pacemaker two months ago and it is working about 25% of the time. I have a 17 year old girl that does not have it. The doctor told me that if they get it they will get it at an earlier age and it could be worse, which is what my son is doing. He has not given up, he takes his meds and drinks a lot of gatorade but he is getting back in to Baseball and just takes it easy when he needs to. We bought him a special shirt through evo shield to protect his pacemaker. My son is a lot like me and we are refusing to let this disorder win, we fight everyday and if your daughter ends up with it, this disorder can be dealt with. We know not to eat too much, try not to get too hot (which in baseball is hard but he manages) not to get up too quickly, don't take a hot bath or get in a hottub. If you workout have somebody there so when you stop and your disorder kicks in they can help you get down if need be. Take cool showers when you start feeling the hot spells come on (which is your body's way of trying to get your blood pressure and heart rate back to normal). If you need to talk let me know, I have had this disorder for 14 years and my son has had it for 5 1/2 years.