Neurocardiogenic Syncopy Support Please
 

HI Everyone:

I am the mother of a 10 year old little girl who was diagnosed with Neurocardiogenic Syncopy about 2 years ago. I would just like to get to know other people who have been diagnosed with this problem, or who have family who do. There do not seem to be a lot of support groups for this. She seems to be doing "OK" on the Florinef that she is on when she decides she is going to take it of her own free will. However, she is non compliant with the drinking of the gatorade and the salt issue. It's just that I am so frustrated with her sometimes when she won't comply. She has had some REALLY BAD spells and seizures and I just can't make her see that if she doesn't take her meds and drink, I am afraid that the next time she has a seizure or fainting spell she won't wake up :( !!!

Thanks for listening:
Marie Russell
Lexi's Mom

For Lexi's sake...
 

I read what Tinkerbell wrote the wrong way...I assumed she let her daughter have control, but this is not the case....so I am deleting this post as it sounded too inflamitory.
My two adopted girls had lots of metabolic issues as well.....so I'm sorry I wrote anything.
Blessings, cheryl

Dear Cheryl:

By no means did I mean to implicate that I don't let Lexi take her meds if she doesn't want to!! I force her to everyday!! That is why I said "of her own free will" meaning that she sometimes doesn't give me a fight and yet there are other days we have a battle of the wits to make sure she takes her pills. I would Definatley NOT BE ABLE TO LIVE WITH MYSELF if she had a seizure due to Not taking her medication. I would never EVER PUT MY CHILDS LIFE IN DANGER EVER...Let me reiterate that I FORCE HER EVERYDAY TO TAKE HER MEDS AND TO DRINK AS MUCH AS POSSIBLE!! I have even gone to school and embarrassed her by sitting in her classroom to watch her drink in school and make sure that she finishes every drop!!!! But there are also days that I cannot be with her that the gatorade bottle comes back with only a few sips taken out of it. And make no mistake, her cardiologist is aware of this situation and he lays in on her too!! I posted in order to get a little support and now that you have accomplished making me feel like an inadiquate and abusive parent, I will bid you a good evening:mad:

Marie,
My daughter was recently diagnosed with Dysautonomia, after searching for answers for years (don't know yet what kind, will be going to Mayo next month for help). Hannah is now 18 and we are still struggling to find what helps and what doesn't. This is a TOUGH diagnosis!
Have you checked out www.dynakids.org ? They have a youth forum to help connect the kids dealing with this as well as a parent forum. I would start there.
Do you have a dysautonomia specialist following your daughter and her meds? I ask because florinef was not the right med for my daughter and we are still trying to figure out the right one. It is very individualized. You really need a doctor who understands this disorder and there are only a few in the US.
You are a GREAT parent for reaching out and seeking help! As a parent we can only force our children to do so much. It is wise to allow your child to have some control and learn what does and doesn't help her.
Stay strong, ok.
Lisa

Marie,

I know it better as Vasovagal Syncope - brought on by my ticker probs. and also as a response to extreme pain. My cardiologist dx'd it. I understand how your daughter feels about the G. product; I can't stomach it. Possibly, her cardiologist might have other suggestions - suitable to replace the G.

This describes how mine feels, and has felt:
http://www.healthboards.com/boards/s...3&postcount=23

When I was describing how it feels for me (at OBT Spinal Disorders forum), Tbackpain1 was very helpful; she actually informed me of the clincial name when others thought I was possibly describing migraines, which I don't have. She might also be able to help you :).

This is a link to her profile - in case you might want to PM her:

http://forums.braintalk2.org/member.php?u=269

Thanks LisaJean and Bobbi....

Lexi goes to see her cardiologist on the 7th of October and he did mention Dysautonomus and we are going to be looking into it. The doc did mention that there are only a few REALLY GOOD DOCS for this and that if all else fail he will be giving me a referral to the Mayo clinic. So I am keeping my fingers crossed. Lexi failed the tilt table study miserably. She was on the table for less than a minute without the IV running and her heart stopped and she had almost no breathing. Talk about horrifying!! The cardiologist said that she had the worst tilt table study in A.I. DuPont for Children's History We have been through soo many tests and to soo many docs. We had docs who said that she was faking it and docs who said that I WAS DOING IT, and then other docs who said that it was in both of our heads!! My mom(Cardiac Technician) and I have walked out on so many doctors because they can be so ridiculous at times.

I even had one doc who wanted me Not to call 911 when my daughter was having a seizure, but to video tape it and send it to him as proof!!!:eek: WHAT AN IDIOT. Some of them just don't understand that as a mother, your supposed to be able to kiss it and make it better all the time, but what happens when you can't?? The holidays are rough for her when all the goodies come out and family members forget and bake brownies to give us or chocolate chip cookies. Halloween has been the worst in the past. Lexi use to think "What's the point in trick or treating, if you can't eat the candy!!" but I can say that family members are remembering and offering her lollipops or starbursts and things like that so she can Trick or Treat with little sis :)

As for the Gatorade, I am now experimenting with new and inventive ways to get her to drink it. Little by little it's starting to work. She seems to like the "RAIN" version a little better. we were told that she needs to drink at least 1 gallon a day and in the summer 2 gallons. That is an astronomical amount and I can sympathize with her sometimes. It's the teachers in school too I know that they have a lot of children to look after in the class, but i keep telling them that it isn't going to disrrupt your class if you walk over to her and whisper in her ear to drink!!

Anyway, thanks for the website and the G. types. I will definately be looking into them.

Thank You Both So Much and Many Blesings
Marie :)

gosh...tinkerbell...
 

When I read your post....I read that you let her practice her own free will with this....I am really sorry I made you so very, very angry. Can you blame me for trying to make some sense out of this if this were the case?
I've gone back and reread your post...and I guess I'm just not reading it right because I came to the same conclusion as did my husband and one other person.
With my daughter....I had to force her into following doctors orders.... she wanted to do things on her own and told me this was her "free will", her body.....after I read your post I thought this is what you were practicing....can you see why I thought this in what you wrote "free will" as this rang some old bells for me in that statement.
Please forgive me for reading your post wrongly.
BT has always been full of helpful and supportive and caring people in the years I've posted.
I have been through Hell and back with my health, my husbands and childrens....and I am not one to hate.
Anyone suffering from illnesses and their caretakers need all the support they can get.
I do hope you find a connection with others who are helpful.
Please forgive my reading your post and coming to such a horrible conclusion.
Your life must be very hard right now....worried sick.
Your daughter will be fine.....she has a good advocate! There's nothing better than a tenacious mother!
Mayo Clinic sounds like a good idea. They are wonderful, caring and very thorough.
Once again....I ask forgiveness in making you feel so awful.
You will find a lot of support here on BT.....hopefully our old site will be back soon.
Blessings to you and your daughter, Cheryl:(

Celiac and Cardio problems
 

Marie,

Have you ever looked into Celiac Disease? Scroll down to gluten Sensitive/Celiac Disease and do some reading. Also read Jcc gluten file:

http://jccglutenfree.googlepages.com/

I had many autonomic symptoms for years. I had a positive tilt table test. I would have out of control blood pressure that would go up to 160/120 and down to 80/50.

Seizures can be a symptom of Celiac Disease. There are a few people on the forum that have had major relief from their seizures by going gluten free.

Have they done any vitamin testing? Have they done a complete ferritin and iron test? My daughter was having similar blacking out problems around 11 or 12. We ignored this as to just hormones. She has also been dx with Celiac Disease.

Don't expect your cardio or even primary doctor to be very familiar with this disease as I went to one of the best clinics in the world and they sent me home with no diagnosis. It was with the help of braintalk that made me go in and demand this tests.

What you might think about is that many conditions have an underlying reason for the symptoms. Doctors are taught to find a condition and treat with drugs or repair with surgery. I am not against either but I do think that doctors need to try harder to find reasons for some of our health problems.

Hope things get better soon.

Marie,
Are you sure she needs to drink that much gatoraide? That is a lot of sugar and calories. I believe that plain water is just fine. Also Propel, Vitamin water etc... if she wants something different. Just make sure she eats lots of salty foods.
I've been told the dysautonomia specialist at Mayo is wonderful. His name is Dr. Fischer. I've spoken with his nurse a few times and she is very nice. It takes months to get it to see him so get a referral right away if that is who you want to see. I don't know where you live but the #1 dysautonomia specialist is in Toledo Ohio. His name is Dr. Blair Grubb. Also supposed to be awesome.
llonghair, my daughter has celiac disease. I think that is where I first made the connection. She maintains a strict gluten free diet (her sister and I also have CD) but it hasn't helped her dysautonomic symptoms any. Darn!
But I agree with testing for celiac disease. Good advice.
Good luck Marie and keep us posted. Please check out the DYNA site. It has been a godsend for me.
Lisa

Dear Llonghair and Lisajean:

Thanks for the posts !!! To answer your question about the Celiac Disease, Lexi has been tested four times with a negative result. The doc said that it was highly unlikely because she didn't have any of the other symptoms associated with a gluten allergy or Celiac Disease. But we tried the Gluten Free diet anyway for 6 months. Unfortunately Lexi continued to have fainting spells and seizures. Her Cardio (who I think is the greatest) said that the last time she had a seizure,,,, 3 weeks ago,,, she ws throwing PVCs in her EKG and that he was a little concerned about that. She has been on a holter monitor since. She has to press the button when she gets that "Icky" feeling that she gets when she is going to faint. He said that there was a possiblility that the docs in the E.R. could have missed something when did the Sonogram???? you know where they take a look at the heart working with the gel. Like when your pregnant. Oh, My I am so terrible with medical terms LOL. In any case they are now going to be looking at WPW.(Wolf-Parkinson White) :(

So we will see what the test shows on the 17th. As far as the Gatorade...Cardio says yes with that much because her blood pressure is sooo low to begin with. And that the added extra electrolytes and sodium help. He also said that any other power sports drink like propel, powerade and things like that would work just as well so we are trying them all. The doc said that NCS on a percentage basis in the case studies,effected the very tall and thin girls which Lexi is.. She is in 5th grade and 5 foot 3 already and slender ( yes she is taller than her mommy lol :rolleyes: ).

I know that when we go out to eat she becomes very self conscious of people watching her put extra salt on her food, but she is getting better at that too. I had an experience while we were in DisneyWorld on vacation this summer. We were in the Magic Kingdom eating at a McDonalds little place and a woman at the next table was just staring at her and listening to me telling Lexi to add salt to her French Fries. After we were done, the woman had enough gawl to come up to me and say that I was a bad parent for allowing my child to add tons of salt to an already salty food and that Didn't I know that obescity and Heart Disease is an epademic :eek: I ask Lexi to go with her grandmother and wash up, I turned to the woman and said "It's Because of a Heart Condition that she Needs the Salt" I would beg you to keep your comments to yourself because you don't know me , my daughter, or our situation!!

I think that it is situations like that that keep her from feeling in her 10 year old mind,,,"Normal" she has always been very self conscious and I think that is part of her partial non compliance with the drinking and the salt. I hope that someday, she will understand that I am a bear sometimes for her own good!!

Thanks and Many Blessings
Marie
P...S... thanks for the Dysautomomus website. I visited there yesterday and I added it to my favs;)

Hey Marie,

I just thought I'd pop in here and say "welcome" to BT2. I've had episodes of Vasovagal Syncope on and off since my early teens (onset with menses), but I never knew what it was or that I had a congenital heart problem until I was 18, when I had an episode of PSVT (paroxsysmal Supraventricular Tachycardia), where I got that "icky" feeling and passed out while I was at work in the local hospital ER (good place for it to happen ;) ).

I just thought I'd give you a few links (hopefully new one's for you) to give you a bit more info. Some are technical, but still good resources. Here's one about abnormal heart rhythms (with ECG tracings explained): http://www.anaesthetist.com/icu/organs/heart/ecg/ Here's a link on WPW at the American Heart Assoc.: http://www.americanheart.org/present...dentifier=4785 I have had to wear Holter monitors on and off for the past ten years, but I've been able to manage my heart problem by maintaining good e-lyte balances (though I do get tired of extra salt sometimes). The Echocardiogram (the ultrasound) is repeated every couple of years, but still status quo, so we're going to just leave my ticker alone for now, though in the future I might need to have them go in and do radiofrequency ablasion to the extra conductors in my heart (I have ectopic foci that cause runs of PVCs and elevated heart rate at times).

Its terribly scary at times, and I remember when I was first diagnosed...I was so mad at having to do all of these extra things and walk around strapped up like some frankenstein with leads through my clothing. I can imagine your daughter is feeling much the same. I just wanted to be able to be a "normal" 18 y/o (college, sports, parties, etc.) and I was able to, once all the testing was done. If your daughter needs someone to vent to, see if a school counselor is available. My college had a great psychologist on staff that helped me cope with my heart stuff and again with my spine (I'm now permanently disabled with back problems at 27).

If you have any specific questions I can help answer, please feel free to PM me if you like. Keep stong, and I am sure your daughter will be able to adjust to all of this.

Theresa

Marie,

Please let us know how your daughter's appointment goes later this week.

I wore a monitor for around 45 days, and pressed the button as your daughter has to. Does hers have the "loop back" feature? What that does is, even if she presses the button "x" minute, the loop back has already been recording; mine looped-back 5 mins. After recording, a tele. number is phoned and the recording is transmitted via phone to the "monitoring" center, which has technicians and others interpreting and faxing the readout to the cardiologist.

Unlike a sonogram or ultrasound, the monitoring isn't just for the moments while technicians are checking things. :) I think it gives doctors a more in-depth "read" on what's happening.

Mine picked up PVCs and SVTs (along with already dx'd symptomatic MVP).

Until this past year or so, my BP was low. As with your daughter, my cardiologist told me to increase salt intake. One of his ideas is one that, I know, won't work for your daughter: he had to pull a holiday weekend shift and told me to go out and have a margarita with salt for him :D. His other idea was eat red meat - along with plenty of fluids, which you already know too well.

When those things weren't working, he put me on the beta blocker Toprol XL, starting at 12.5 MGs a day. Now, I'm on 50 MGs a day and it seems to have really stabilized things. During my cardio. appointments, the doc still detects when things are working/sounding right, yet it's a lot better now than everything felt a couple years ago.

I don't know whether her cardio. doc might have mentioned this, so I'll go ahead and share what mine told me... Whenever I am awake and feeling light-headed or dizzy, sit down immediately if I'm standing - and no matter whether it means I'll have to sit on the floor or ground even in public. (When pain is causing the syncope, the pain is what stops me from standing.)

I can definitely relate to what you and your daughter are going through, Marie.

Hi Tinkerbell. I have NCS too. Unfortunately, the high salt diet and meds didn't work for me. I now have a pacemaker. Please don't let that scare you! It's not nearly as bad as it sounds. In all honesty, I prefer it to the meds (those meds were rough, yuck!) I was terrified when I first found out I had to get the pacemaker, but now that I have it, it's great. I am not completely pacer dependant (my heart can "outrun" my pacemaker, it just doesn't let it slow down below 60)
I too failed a couple of tilt tests. First one, I was up for something like 7 minutes.....then my heart stopped, I stopped breathing, and my blood pressure was non-existent. The 2nd one I was on meds and stayed up a bit longer, but when I went down, the same thing happened. That's when my doc said it was time for a pacemaker.

I don't know what to tell you really. Just wanted to reply to say I know what it's like to go through it. You mentioned that they wanted to repeat the sonogram thing (an echo?) I wonder if they are thinking that they might have missed mitral valve prolapse? I wonder that because my first cardiologist had the same worries. However, my 2nd one (1st one moved) said that my NCS just mimmicks MVP. Maybe that is what it is in your daughter's case too. Or is it even MVP that they are looking for?

Have they repeated the tilt table since your daughter started taking meds? I'm not a doc, but I STRONGLY urge you to think that one over a LOT if it is suggested. Your daughter is obviously still experiencing some major symptoms....to repeat the tilt would more than likely result the same as the first time....it did for me. If I had it to do over again, I would have refused the 2nd tilt...live and learn:rolleyes: I too was told I had the "worst reaction" in the 20yrs the hospital had been using the tilt test where I had it done. Wow...NOT something you want to be famous in a hospital for! LOL Bless your and your daughter's hearts!

I did have a couple of problems when I first had my pacemaker implanted. If it is ever recommended for your daughter to receive one, feel free to PM me! Feel free to PM me if you want to anyway:)
Let us know how the appt goes.-Hyper

Ncs
 

Hi i am an 18 year old female. Today i was diagnosed with NCS or Nuerocardiogenic Syncope. I have a highly severe case of this syndrome and must be medicated. My physician is putting me on Paxil an anti-depressant that also eliminates NCS symptoms. I am really upset about having to go on it. I am just looking for some outside information on this drug and how it will help with my NCS.

Thanks
Alyssa

hello Alyssa
I just wanted to let you know that I copied your post over to the Medications forum and mrsD has answered
here it is
http://neurotalk.psychcentral.com/sh...894#post156894

neurocardiogenic syncope
 

I am 55 and have been passing out since I was 30 always blamed on stress. Iwas diagnosed with NCS in 2000 - I was wearing a halter monitor, fainted, was rushed to the hospital - my heart stopped for about 4 seconds - started again- had a pacemaker implanted (wrong one) ended up in NYC and a Medtronic pacemaker was implanted. I have been on every medicine mentioned in the forum since I have had the pacemaker - I do not faint any more, but every 6-8 weeks I have such severe, what I call "spells" where I feel like I am going to faint- the episodes occur every hour for a 24-36 hour period. they are so severe that I think I am going to just die. It is such an awful experience. My cardiologist said it is a syndrome and he has tried so many different medication, halter monitors- NO ANSWERS - just have to live with it. I have been sick for 2 days now - could teach on Monday - went to work today had " spells every hour today - not as bad as yesterday. I am so tired of this I don't know what to do. Has anyone have the same problem every 2 months> I know many have NCS- but I am new to the board and haven't read anything similar to these recurring "spells" > Thanks to anyone who can help me. I so discouraged. Kathy

response to support
 

dear Marie,
My name is Elizabeth and I was diagnosed with the same same condition your daughter has at the age of 17 but I suffered episodes since the age of about 7. I knwo what you are going through with the nervousness about the seizures and the passing out because at 27 my mom still is freaked out by it. I take a medication called Norpace and I have not had an episode since I began the medication. I also know how your daughter feels about having to take a pill for the rest of her life. That's a scary thought for a young girl to think about. I had my time of rebellion with not taking my pills, thinking that the condition might correct itself. Unfortunetly it does not. I am fairly healthy considering and lead a normal life. I live alone and have no worries doing so, though my mom calls way to often to make sure I am okay. I go to the Cardioligist 1 time a year and have not had to go through any major testing (tilt tests, ect) in years. Know that I ahve approximently 15 episodes in my life and have woken up from all of them. So be confident knowing that if controlled correctly the condition is not as bad as it seems. I wish the best for you and your daughter.

I was just reviewing your blog, and my daughter has orthostatic presyncope. Your daughter's symptoms appear to be similar. Her doctor stated that she will eventually "grow out of it", but I still worry. She has to make sure she gets enough fluids (such as gatorade), and it seems to get worse when she is doing physical activity (playing on school basketball team). I honestly thought she was going to pass out, and her father seems to think she is just out of shape. She is not overweight, loves to be active, normal as can be. She saw a cardio, an neuro, and they want her to continue with her activities, just be sure she has plenty of fluids, (which is supposed to open her veins for blood to pass through better.) Unsure if this helps any, but I pray that all goes well with your daughter.

syncope
 

You all have me wondering about this. I suffer from an inner ear problem. I get vertigo nystagmus and a lot of other symptoms. I had been told by a chiropractor many many years ago that he didn't feel my blood pressure changed as well as it should when he lifted me up on the type table he used. I don't have the drastic symptoms that you all describe. I fainted alot when I was preganant and in gym class even though I wasn't heavy I couldn't run well and would faint after running. Now I am 52 and 30 pounds overweight. My blood pressure is around 85- 90 over 55 - 60. Usually standing my blood pressure is 107 or so over 65 or so. Of course if I am moving around alot and things it changes. If I sit in my chair and watch a movie and especially if I eat. Some times I can start to feel my vision getting nystagmus and i will try and stand up and be off balance and fall over. I have always thought it was an inner ear problem. Eating really seems to affect my balance. I have taken my blood pressure trying to test myself by standing for 10 minutes to see if it drops or anything. I can't tell. I was thinking the other day that some of this feeling I get might be the feeling of fainting and not just veritgo. A question I have for those that have some knowledge of this. Can a person have just some dysautonomia where its not a servere as is described by people here? It would be good to know whats been happening to me all this time. Thanks if anyone can help.

Linda

syncope
 

Sorry if I post this twice. I don't see it but maybe its here. Can't remember exactly what I wrote on the previous one. I am wondering if a person can have a syncope problem but not have symptoms as severe as are written about here. I tend to have trouble sometimes standing up. I will be sitting and get a feeling of not focusing my eyes well and go to stand up and will fall over. And it seems like eating can make this happen to. I am 52 and have inner ear problems and have always blamed it on my inner ear. I tend to have lowish blood pressure in the 80-90 over the 55-65. Of course its higher when I am standing up. Usually 105 to 110 over 70.

I know dysautonomia isn't just low blood pressure it more wild fluctations as well and not rising up on standing and other stuff with the heart. I haven't noticed any heart problems. Although I have a heart murmur the doctor said the beat it is on isn't the problem beat or something like that. Anyway if anyone with knowledge about this disorder has thoughts about this I'd appreciate it. Of course I know we aren't doctors. I have had my blood pressure checked laying down and the doctor did a valsalva something. He didn't say I had dysautonima but told me I should try to go to a gym and get some shots of vitamins he wasn't really worried about it. Which was rediculous as many days I can't even walk much less go to a gym.

Linda

Hello, I'm new here.
 

Hello Tinkerbell,
I was diagnosed with NCS as an adult after many episodes of passing out and being rushed to the hospital, only to be released by doctors who couldn't figure out why I blacked out. Your daughter sounds a bit more serious than my case, but anyhow....I thought I'd tell you what one doctor told me...in fact he was the first doctor to diagnose me properly . He mentioned that NCS usually happens in preadolescence years and often patients grow out of the condition, or it gets better as they grow older. Its been sort of the opposite with me, having fainting and dissiness followed by intense headache, and malaise as an adult. He asked me if I was very active in youth, and I said yes. You see I was very athletic, (exercise raises your blood pressure), always wearing shorts year round because I had great circulation...was never cold. Thus I wasnt having fainting spells because I had good blood pressure then. I'm less active as an adult...(trying to fix that), and stress and caffeine is a trigger for me.
My point here is to offer some lifestyle changes that may help your daughters condition. Finding activities that naturally raise her blood pressure like...dance, jogging, anything cardio....and simultaneously, she will likely intake more fluids (water) after exercising. Regular exercise also lowers stress levels(which also can bring on NCS spells).
I am a credentialed educator, and I've done a lot of reading on the subject...As far as I can see, all in all exercise and drinking more water, avoiding caffine, and stress, all help to elleviate and possibly eliminate NCS. Ok sorry, I sound like I'm rambling now. Your daughters young, and has to look at the long range picture... tell her she only has one body, and isn't it worth it to take care of it now. Adopting some routine habits may make NCS go away all together in her adulthood. Hope this helps.

ncs
 

i was just diagnosed with vasovagal or ncs but i think it was caused by me running too much soo i stopped and ive been taking salt pills and drinking loaded water but i get that feeling up to 5 times a day. I get sweaty and feels like i need to use the bathroom and my legs go week then i have about 30 minutes to lay down and sleep or i faint. Do you guys know anything that could help me im only 16.