NCS frustration!!

[lizzie482]

Hi!! I am looking for some suggestions on how to better handle my NCS and tachycardia. My Dr. is pretty distant and doesnt seem to really understand or care about my quality of life. I am 21 was diagnosed at 17 and have been on a wide range of meds since. The problem is they have so many side effects. It just seems odd that I used to run frequent 10K's and centennial bike rides and now I can only go a few city blocks before I get too dizzy. I also had to quit playing volleyball, which was pretty devastating to me. I am very lethargic but have insomnia at the same time. I have memory issues and all sorts of other complications. I am hoping someone else understands this, also I wonder if anyone has had an ablation and pacemaker and if they think it was worth it. My Dr. just increased my meds again and put me on two more beta blockers and told me I had to wait another year before he would even consider surgical options. So if anyone else wants to share their experiences with me that would be FANTASTIC!! Thanks!!

Liz

[Ernie]

Hi Liz,

What treatment have you tried so far?

Ernie

[Poohbear]

Hi Liz!

I can relate!

I do have a pacemaker after years of trying meds and they either didn't work or the one that worked the best (Florinef and atenolol) my body suddenly began rejecting (mainly the florinef). At that point, because my testing showed significant bradycardia (severe heart rate drops) a pacemaker was implanted.

I have had the pacemaker for almost 6 years. I have always struggled with presyncopal episodes but for the past year I have also been having syncopal episodes.

I was told MOST people with NCS &/or POTS don't respond well to pacemaker because they don't tend to pass out very often as a result of heart rate drops but rather blood pressure drops. So before surgery make sure your syncope is related to heart rate drops and not blood pressure drops otherwise it won't help you at all and even if it helps you it may not improve you significantly.

In terms of Ablation, my surgeon will not do it. The research still shows that on the people who had ablation though they initially had some improvement, within 9 months to a year their bodies were less able to cope with blood pressure changes than prior to surgery and they felt worse.

I personally have not talked to anyone who felt much better for a long period of time since having ablation.

I'm not trying to discourage you but I would just urge you to do lots of research before looking into surgery.

In terms of sleep I took a very low dose of Ambien for a short period of time and it helped me get a better quality of sleep. It's designed to be used for a short period or for occasional use.

I also find that on my better days, when I am able to, that exercise is helpful in getting me to sleep better. Even just a walk around the neighborhood helps.

Hang in there!

[morgan617]

Hi, I had ablation in 2003 and will say again, it was the worst thing I've done to myself. I would take the tachy and high bp any day over how I feel now. I was working right up til the ablation and have never been able to work since. All the literature says it is the worst thing to do, although at the time I didn't know that and trusted the cardiologist. It may work for some who just have heart issues and no OI issues, but I sure wouldn't reccommend it to anyone. I now have very wide swings in bp, no way to compensate and the fatigue and fog are the worst they've ever been. I can't even spell anymore. And my coordination is for the birds. I haven't seen a single person who has benefitted from it on these sites. I guess there's always a first time, (LisaColumbus good luck!) but I would never do it again. Too bad hindsight is always 20/20. Sorry, welcome! morgan

[Jen]

Welcome, Liz. I also have NCS. I'll describe a bit about my experience. I had a pacemaker implanted two years ago (when I was 20). It was implanted because my cardiologist discovered that I was experiencing asystole during my fainting episodes. I was told to get the pacemaker right away, as the periods of asystole were only going to get worse. My cardiologist made it seem like the pacemaker would be a cure-all and I would be able to stop taking all of my heart meds (midodrine, florinef, and a beta blocker). Unfortunately, I still continued to faint after I got the pacemaker and had to go back on all of the meds. However, I do have hundreds of rate drop episodes recorded each time I go for a pacemaker checkup, and for that, the pacemaker has been amazing. I faint much less frequently now (well, I am going through a rough patch lately). The pacemaker does not help with times that my blood pressure crashes. It is important for you to find out what causes your NCS. Is it a drop in heart rate or a drop in blood pressure? These do go together, but I've heard it's important to find out which happens first, such as through a tilt test. If it's a drop in blood pressure, a pacemaker is going to be much less effective. As long as you aren't experiencing severe bradycardia, I would try non-surgical approaches first. If you aren't satisfied with the way your cardiologist is managing your problems, don't be afraid to try someone else. Good luck.

~Jen