I Don't Get It

[pat57]

Pacemakers are a somewhat controversial treatment for neurocardiogenic syncope. Many studies have suggested the efficacy of pacemakers. However, a double-blind randomized trial showed that pacing therapy did not reduce the risk of recurrent syncope in patients with vasovagal syncope. The authors of this study concluded that pacemaker therapy should not be recommended as a first-line therapy for patients with recurrent vasovagal syncope (Connolly, Sheldon, Thorpe, Roberts, Ellenbogen, Wilkoff & Morillo, 2003).

the above is from the info page on NCS treatment. I think it should work 100%, being as I faint from low BP and HR. As I have mentioned ,my Dr. wants me off Norpace. I see him on the 23rd. Off Norpace I am a frequent fainter and have serious convulsions. I will be a single parent as of Nov 4th. I need something reliable. What "I want" is a pacemaker and to use immediate release Norpace as a backup.

What do you guys think?

I have NCS and OH

thanks

[potsgirl]

I am a fainter and also have a pacemaker. The pacemaker does help with my bradycardia, and it keeps my HR from going below 60, but I still faint with it. It doesn't stop my BP from plummeting when I get up or stand too long. I think you need to talk to your doctor and tell him that you must have something that will be as reliable as possible as you have children to take care of. He/She should be able to give you the best answer...

Take care,

Jana

[flop]

Hi Pat57,

sounds like you are in a difficult situation. As you have both low BP and low HR with your syncope it is unlikely that any one treatment would work alone. Pacemakers sense the heart rate and will kick in to prevent the HR dropping below a set level (often 50 or 60 beats per minute). Unfortunately a pacemaker cannot prevent or treat low BP so syncope can still happen from the low BP alone.

Often a combination of treatments are needed to treat syncope. It is really bad luck that you are having to switch off Norpace. Do you take any other medications or have you tried other meds previously? Perhaps a med to raise your BP would help?

Flop

[Tachy Phlegming]

Your doctor shouldn't give you a treatment which doesn't work to replace one which does.

I think you need to talk to your doctor and tell him that you must have something that will be as reliable as possible as you have children to take care of.

I was not aware that children are a motivating factor for a doctor to give proper and reliable health care in cases where he would otherwise fail to provide it -- but maybe the original post was a reference to weighing the benefits and risks of continuing Norpace right now-- where you've decided that it's worth it?

[potsgirl]

Unfortunately, this is indeed sometimes the case. I've head people tell stories of doctors who will change their minds on meds due to factors such as children in the home, or a situation where a patient lives alone...They may attempt to try a little riskier treatments with a patient that has somebody in the home with them and is better able to handle an unfortunate situation if it occurs. It certainly isn't right, be any means....

[tinkerbella]

My doctor wanted me to talk to another doc about a pacmaker and I said NO!!! My neuro said none of her pots pts has them, but when I first met her she said some have to. My cardio and I decided that I would still have all the other problems that I still have and it would not solve my problems. Along with ablations would be one after another, after another, so we have put all of this aside as a last resort.

Bellamia~

[yogini]

It's hard to interpret the study from the blurb. First line just means that it's not one of the go to treatments of choice, which makes total sense. First line would be something like BBs or florinef. There are so many risks and expenses with pacers and they aren't appropriate for everyone, so they clearly aren't first line.

I think pacers help best with slow and stopping heart rates for NCS (as opposed to POTS). Many who get them don't have a choice - either their heart stopped on the TTT or they had a failed ablation. If you do have a choice to wait, there may be other medical options you can try first - there are meds that speed up your heart and BP. Ask your doc lots of questions about other options and maybe even get a second opinion...or two!

I know you need to feel better soon but it probably makes sense to think it though and take things slowly on this one.

Edited October 18, 2009 by yogini

[pat57]

Unfortunately he feels I'm in danger staying with the Norpace because it has caused right branch bundle block and Norpace is know to have potentially deadly side effects.

I did tell him the benefits outweighed the risks and its not broken so don't "fix" it. He said he would consider it and have an answer after I got tests done. The tests are done. "We " decide on the 23rd. Because I know , they found a murmur, two value regurgs and the bundle block _all new _ I expect him to refuse to prescribe Norpace. There are also rumors that Norpace is being taken off the market.

I always thought the HR is what dropped the BP but that may not be the case, thank you for pointing that out- flop. My Base BP has risen a lot thanks to menopause and an SNRI.

I just found this......................

"Effects of orthostatic self-training on head-up tilt testing for the prevention of tilt-induced neurocardiogenic syncope: comparison of pharmacological therapy.

Abstract Although a wide variety of medical treatments for neurocardiogenic syncope have been proposed, therapy has largely been emperic based on the mechanisms commonly believed to lead to neurocardiogenic fainting. To determine the utility and efficacy of drug therapy and an orthostatic self-training program in the prevention of tilt-induced neurocardiogenic syncope, we investigated 43 consecutive patients who had shown syncope and were induced by head-up tilt test reproducibly, with either traditional medical treatments or orthostatic self-training at home. The initial 19 of 43 patients were treated with either oral propranolol or disopyramide therapies. The remaining 24 patients were treated with an orthostatic self-training program alone. Effects of these therapies on head-up tilt test were reevaluated in all patients. Propranolol prevented syncope in only six (32%) and disopyramide in five (26%) of the 19 patients. There was no significant difference in the effectiveness between them. Syncope was prevented in nine (47%) patients with either propanolol or disopyramide therapy alone, while in the remaining 10 patients it was not. On the other hand, orthostatic self-training program prevented syncope in 22 (92%) of 24 patients. We concluded that orthostatic self-training program is far more effective than traditional drug therapies. Orthostatic self-training is an effective, safe and well accepted therapy in the prevention of tilt-induced neurocardiogenic syncope."

I believe I must give this a try.

thanks- everyone for your input, its helpful

[potsgirl]

Thanks for posting this - It's something I'd like to try, too!

Cheers,

J

[juliegee]

Hey Pat57-

I don't have any wisdom here- just wanted to voice my support. I'm anxious to see what you end up doing. My son, like you, has low BP and a very low HR- sometimes in the 30's, but that's usually when he's generally unwell. His HR regularly lands in the 50's.

He's struggling right now with meds- having trouble eating... BUT, florinef, salt tablets, lexapro, and concerts (a stimulant) somewhat help the autonomic stuff.

Let us know what you figure out. I'm sending good thoughts your way!

Julie

[bjt22]

I think there's a lot of controversy because pacemakers don't totally "cure", "control" or even negate the need of most for further medical treatment. I suppose it depends on how one looks at things. From the perspective of patient, I can say that I would be willing to try it if it just made me feel a little better.

That said, my doctor is not interested in doing one for me. According to him, since I have few daytime episodes of bradycardia, it's unwarranted. Well, it's true that I might experience little daytime textbook bradycardia. However, since my body reacts very poorly to my heart rate going below about 65 bpm, I consider anything less than that bradycardic for me personally. I also experience extremely low heart rates during my sleep. The latest impact of this was my losing the hearing in my right ear. It was a total loss for a couple of months, and I now seem to be recovering at least some of it...however, I really don't want to hear (no pun intended) about these incidences not being problematic. Obviously they are...

[pat57]

I certainly will let you know what we choose and how it works.

FYI Macsmom Pristiq has helped me alot, if your son has NCS and not POTS, I think an SNRI is worth considering. I can actually stand still without symptoms

most of the time. Probably important to note that I have OH too. Have not been able to stand still more that approximately 20 seconds -symptom free- for a long time. Over a decade.

[juliegee]

I certainly will let you know what we choose and how it works.

FYI Macsmom Pristiq has helped me alot, if your son has NCS and not POTS, I think an SNRI is worth considering. I can actually stand still without symptoms

most of the time. Probably important to note that I have OH too. Have not been able to stand still more that approximately 20 seconds -symptom free- for a long time. Over a decade.

Thanks for the info. What's OH? Orthostatic hypotension? Mack most certainly has that. He is DXed with NMH- same as NCS, not POTS. One other question, what's an SNRI? How is that different from an SSRI? Thanks for your help.

Julie

[pat57]

You are correct Re OH.

And SNRI.......

I'm on http://www.pristiq.com/treating_depression.aspx