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 . 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 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

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

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

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.

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

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