Advice (help please)

Hello my name is Lila 25y and I have been diagnosed with Neurocardiogenic syncope (or some know as Vasovagal syncope) this past fall. They give me some meds to bust my blood pressure and I am not sure it is working. I am mom of 2 year old boy and full time student, I am fine for 2-3 weeks and then I get worse, I blackout few times a day for couple of days or weeks. I just recently discovered that there are pacemakers that can help. lately i been thinking about pacemaker, but I needed some advice from people with same issues. My question to all of you with some condition like mine who had put the pacemaker does it help, what is it like, did you are any complication any problems is there any more blackouts. Please help with any advice ( what did you try before pacemaker)?????

9 Comments

Pick me, pick me!

by ela-girl - 2008-04-22 01:04:07

Hi, Mrs-Lila.

Well, let me say that I understand your frustrations firsthand. I, too, was diagnosed with NCS as well as severe bradycardia. During NCS episodes, my heart rate would be under 10 beats per minute and my blood pressure would be 60/40. This condition just started out of the blue one day as I was getting ready for work. I had no warning signs a blackout was coming either. I would just wake up from it afterwards feeling all sore because I usually hit ceramic objects. I stopped driving or doing anything by myself. I also slept my life away. And my doctors didn't really believe me about what was happening as they could never catch anything on tape--I would blackout many times in a day or maybe a few times a week or many times a month. It was a problem that was consistently inconsistent.

In fact, my cardiologist just drugged me with Toprol XL and kinda hoped I would go away. At one point he even mentioned a pacemaker but said he would never put one in someone as young as me. (I am now 30) The Toprol was horrible. It made me even more sluggish and wasn't helping with anything. And when I'd blackout, it would take me days to regain my body's homeostasis--even longer if I blacked out many times in a day. I looked like walking death. I had a tilt-table test and a type of sleep/light study and some CT scans to make sure my head was ok after falling so many times.

It wasn't until I moved states and blacked out at school (I'm a teacher) and was rushed to the ER did I get an EP that took me seriously . When I woke up from this blackout, I didn't even know who I was or where I was. That was the first time that had happened and I was scared. I had my pacemaker put in via emergency surgery and it saved my life. No joke.

For me, the pacemaker has been a God send. I have gotten off the Toprol and have no blackouts. I have only felt bad once in the almost 2 years since getting the pacemaker--and I was having my period, a sinus infection, and a migraine all at once, so...! I know that people can still have their symptoms even after the pacemaker because the pacer can only do so much. But for me, it's been a blessing. I have a great life now-- I drive, I hike, I can do stuff alone, etc.

I know that there is a loop recorder device that can be implanted in you like a pacer for up to a year or maybe it's 18 months...anyways...you carry a small remote with you at all times and when you have a "spell" you hit the button and it records what is going on with you at the time. Maybe this is an option for you before a pacer? Have you gone to an EP? They are cardiologist with 2 or more years of training that specialize in the heart's electrical system.

PLEASE feel free to private message me if you want to chat more. I can understand what you're going through. There are a few more people on the site with NCS that haven't chimed in yet...I hope they will!

Hang in there!
ela-girl

Forgot to mention...

by ela-girl - 2008-04-22 02:04:17

You asked about tests...I also had EKG's, ECHO's, and holters. And I was on the Toprol for its beta-blocking effects, not for high BP. I fought this for 5 years before the pacer, so don't give up.

ela-girl

Welcome Lila

by Swedeheart - 2008-04-22 02:04:19

Lila,

I do not have the same medical conditions you described. I do have a pacemaker and am relatively new to the pacemaker world. I have had mine just at 2 months.

It appears you have your hands full with school and a toddler! I guess the advice I would give you is to find an excellent EP Cardio doc and discuss all of this with him/her. There are tests that need to be performed before making this medical decision as well. I am sure you want to find something to help you get rid of the blackout times. That isn't easy, or fun! Do your homework on the subject and read everything you can get your hands on to help make an informed decision.

My pacemaker is for heart block, my AV node doesn't always send electrical signals, so my pacemaker kicks in when needed. Recovery time for me has been quite lengthy, but I am a senior citizen... and don't recover as quickly as I would like. After a pacemaker there are restrictions for using your left arm and lifting. So... you may need to have help with your son, have someone stay with you for a few weeks, a friend or relative who can be there all the time. It often seems to take awhile for the pacemakers to settle in and really do their job. Some folks (depending on their condition) seem to feel much better right away, others it takes weeks, months, or even a year.

I don't know if this article I will paste a link to is exactly about your condition, but maybe close, and may give you some information. You will need to scroll through several pages of information.

http://heartdisease.about.com/cs/arrhythmias/a/Syncope3.htm

Good luck and I hope someone will respond that has had similar conditions. Take care of that sweet son!

Swedeheart

I can relate!

by bini - 2008-04-22 07:04:02

Well I too have VVS which I've had for almost 4 years now.
I have a condition called POTS/Postural othostatic tachy, this causes my BP to be very low.
It took many different tests ....tilt tables, ekgs, cat-scans, ultrasounds, echos, eeg's....this list goes on and on. I felt like a lab rat until I was sent to a specalist in Ohio who has been my saving grace.
I am on different meds like mestinon and midodrine, I also have a biotronik cylos PM. This is a special PM which can sense a drop in BP then it will increase your heart rate to try to pump the blood up.
I am still fainting/ unfortunatly I am one of the tougher cases he has seen bc my BP is so low that I am ALWAYS in a pre-syncope state. He does believe that with a few adjustments to my PM and meds the fainting should improve.
I have also (besides this site) found a great group for people with Syncope called stars-us.org. They could be very helpful to you!
Anyway, Please feel free to private message me anytime!!!!!
Christine
PS: My cardio in OHIO wrote a great book for patients with syncope. It is called The Fainting Phenomenon by Dr. Grubb. This book has tons of helpful tips.

hey

by impacing - 2008-04-22 07:04:42

hey mrs lila. i am a 17 yearold girl. i have a pacemaker for heart block but i have also been diagnosed with vagovasal syncope. this continued after i had my pacemaker implanted. you can always send me a private message if u have any questions or wanna talk.

I have it

by boatman50 - 2008-04-22 11:04:59

I never had it until after my pm was put in. After talking to my doctors my EP had the best advice. Stay well hydrated! I drink plenty of water and a drink called Propel. Its like Garorade but with less sugar. Since I have a pm the EP also raised my lower rate to 70 bpm, my heart will not beat slower then that now. I still have the vvs, just not as often.
Good luck to you, Boatman

I too have Neurocardiogenic syncope

by winelover - 2008-04-22 12:04:30

Hi Lila,
I was diagnosed with the same after passing out all the time. At first I got medication like you but felt more and more sick. Eventually I started to pass out again and was diagnosed with 3rd degree heart block. My Cardiologist decided to fit me with a pm. I got off all medication and have not passed out since - it has been 11 years and I am paced 100%. My lower setting on the pm is set pretty high because I still get what I call a sinking feeling I used to get before passing out, but I don't pass out. After all these years I don't even get nervous anymore when I get that feeling, I know my pm will keep me upright. If a pm is right for you I of course do not know, but it truly saved my life plus gave me back the quality of my life.
Take care.

Hi lila!

by dw5281 - 2008-04-24 04:04:56

My condition is sort of similar I did black out but not each day like you! i used to have a loop recorder implant which i activated the last time I blacked out & they found that my heart stops when i do black out for quite a while (26 secs they finally decided on!)

I had a day to get used to the idea before they put the thing in (ive had it since feb this year) but i can honestly say that I feel great! i'm a PE teacher & i found i did have to take quite a while off work as I'm always always active (5 weeks in the end) but thats it really. I still get pains at the site but I just take painkillers & its not a big issue.

I used to get upset by it but now i feel blessed that this is available for me otherwise my heart may have decided not to start! You obviously don't know if you will have to have one but if you do don't worry its fine!!

I dont have the dizzy spells i used to have & i havent felt close to blacking out i feel better than i have in years (i'm 27 by the way). Feel free to message with questions about the procedure or anything about black outs

Debs x

I sent a private message

by bowlrbob - 2008-04-28 06:04:12

I have sent you a private message. Check it out my story is there. Bowlrbob

You know you're wired when...

You have a dymo-powered bike.

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My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.