Michigan State University

[Sue]

Hi! Just returned not that long ago from our trip to the University of Michigan Cardiac Heart Center. My husband is so impressed, believe me if you knew him this is so one step forward. He is very involved with my health, and very critical of doctors. Dr. Pelosi and his staff are so knowledgable I couldn't believe it. As I posted before I was looking for someone I could see local that wouldn't have a problem working with Dr. Grubb. Hah!!! He already does!!! How lucky could I get.. He was so patient with us. My husband had a million questions, as he took his time to explain everything as so we now understand things we hadn't before.

My last tilt table results, of course were positive with heart rate dropping to below 40. He strongly recommended a pace maker. I wish I would have wrote the name of the device down but unfortunately I didn't. It is kind of a holter but it is new. He has only had it available to him since January. I don't have to do anything even during an episode, it will record because it knows when to record. hmmm. This will help him to determine if a pacemaker would help. So of course my question is, does anyone have a pacemaker with NCS and how has it helped you. Of course this makes me a little nervous, so I would love any info. you could give me.

As far as the florinef, he didn't feel any need to add potassium supplements or B-6 as long as I was eating a healthy diet and taking a multi-vitamin.

Thanks

Sue

[Michelle Sawicki]

Hi Sue!

Thanks for posting this. As a Michigander, I was curious about Pelosi. I'd always seen Dr. Russell at UofM. I'm happy to hear that the appointment went well and that you were happy.

I know some docs are now questioning the use of pacemakers due to some recent research.

See: http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=12734133

By the way, is Dr. Pelosi at Michigan State University or the University of Michigan?

Again, great to hear the appointment went well.

Michelle

[goldicedance]

I have a pacemaker--top of the line, rate responsive. In fact, I am already on my second. The first lasted about 6 years.

I am confused as to why your heart rate dropped to 40 when you were on the tilt table test. Isn't your hr supposed to increase when standing.

What is the reason for the pacemaker. Do you have pauses--i.e. bradycardia? Have you had a sinus node ablation? That's what necessitated the need for a pacemaker for me. And, it didn't stop the rapid heart beat. Basically with POTS your heart is not the problem; it is the autonomic nervous system that tells your heart when to beat. After I had the ablation (before research showed that ablation was not the way to go with POTS), then I not only developed bradycardia but also junctional (av tachycardia). The bradycardia was caused by the ablation and the junctional tachycardia was a result of not only the ablation but POTS. I later had an AV node ablation so now I am fully pacemaker dependent--not a situation that I relish. In fact, my first POTS doctor said that my POTS would have been easier to treat had I not had the sinus node ablation and the pacemaker issue.

Be very careful about pacemakers. The ony device I know that can slow the heart in an implantable defibrillator and no way Jose would I want that.

Good luck and let us know how you do with your new doc!

[justme]

Sounds like NCS. My wife had a pacemaker implanted as well. Her heart would actually stop for extended amounts of time on the TTT. At the time, she didn't know about POTS. They knew there was something really wrong with her nervous system, but didn't know what. It is rough to have a pacemaker. Once there, there is the need to replace batteries, change leads, etc. My wife has a petite frame so you can actually see where the pacemaker is and the site is very sore to the touch for her. Mayo Clinic tries to avoid pacing if they can, but there are situations where it can't be avoided. My wife's pacemaker was also implanted in Michigan. Her's kicks in when her pulse drops below 50.

It seems almost ironic that her pulse can drop into the 40s or even stop, but at the same time can also go above 230 too.

[MomtoGiuliana]

goldicedance

What is junctional tachycardia?

Thanks, Katherine

[goldicedance]

What is Junctional Tachycardia? The heart beat goes electrically speaking from the sinus node then the junctional node and then the ventriculr (" My photo does not do these pants justice. The pattern in actuality is a muted washed denim stripe. Somehow, stripes and checks do not photograph too good.?) node. The junctional node kicks in when it does not get a good signal from the sinus node. In my case, even with the sinus node ablation, there was still tachycardia due to pots. Junctional tachycardia feels much worse than sinus node. Your heart feels like it is going to beat out of your chest, you are really short of breath, and you feel like you are going to keel over.

May you all never have junctional tachycardia!

[goldicedance]

Just Me: Sounds like your wife got the pacemaker for bradycardia. Are you under the impression as I am that there is no pacemaker that will stop tachycardia.

By the way, I am on my second pacemaker.

[Dawg Tired]

I got a pacemaker a year ago. I had a + TTT; but the Dr said I was getting the pacemaker because on my Holter my HR dropped into the 20's at night. The site hurts! Everytime I complain about it I am told I am lying. I can no longer sleep on my left side. I still have just as many pre-sync spells, and the doctor who put it in told my LTD company that I am fine to go back to work - I have recieved "treatment" for the NCS. If I had to do over again I would do without. BTW - I never saw the EP who put it in - only his nurse practitioner. I tried to make an appointment to see him and they told me I wasn't one of his patients! I have posted inquires on NDRF looking for anyone with NCS who was helped with a pacemaker and got no responses, looking elsewhere the only anecdotal cases I have found where anyone with syncope was helped with a pacer was on the sites of the pacer manufactures - and those patients were in their 70's.

[MightyMouse]

Okay, first off, if the doctor put in the pacemaker, he IS your doctor. As soon as he billed you or your insurance, he established "a duty of care." If you want to rattle him a bit, you can ask his secretary or office assistant to include those words in your message along with a request for an appointment.

However, given he's clearly not wanting to get involve, I would suggest seeing a new doctor (ep cardio or otherwise) about the site pain. That is something that should be addressed.

Nina

[Dawg Tired]

Oh, Nina - I gave up and moved 1200 miles away from him. I obviously wasn't getting anywhere there. Much better care here! And I'm now only a day's drive from Vandy. My attorney is dealing with the LTD co/Dr-who-only-wanted-money. BTW, the company I used to work for has now dropped this LTD company. They told them that if they weren't going to pay their disabled workers then they really weren't a "benefit" they could offer to their employees!

[denabob]

pacemaker for POTS? I read somewhere that POTS can actually be as a result of a pacemaker. Or am I experiencing brain fog?!

Tilt Tests usually do show high HR but with NCS the heart rate will bottom with the BP mine did.

[justme]

This is interesting. My wife has the situation where her heart feels like it is going to beat out of her chest. We just went in for her pacemaker clinic yesterday. She now had 174 incidents of a heart rate above 180. She had one 15 minute interval where it averaged 220bpm. She also had a run of about 10 minutes at about 195 another day. This is after going to Mayo and starting a new treatment plan.

They told my wife that her pacemaker site would take 2 years to heal and they were about on target. After her surgery, if you tried to get withing 2 feet of her you were looking to get killed. The site was extremely painful. It is not so bad now, but you still can't touch it directly. Does anybody actually get swelling over their pacemaker site? My wife runs into this when she isn't feeling well sometimes.

There is no rhyme or reason to her heart rate jumping into the 200s. It is not exercise or stress induced.

We also got the wonderful (sarcasm) news that her battery is looking like it has 36 months left. 4 months ago it was 60 months. At this rate, she has about a year.

POTS can't be stopped by a pacemaker. A defib pacemaker could potentially be used to correct rythm problems, but even Mayo strives to not introduce pacing as a solution.

[goldicedance]

So sorry to hear that your wife is having problems with her pacemaker site. I am now on my second pacemaker. Moreover, a few weeks after I had the first pacemaker implanted a lead dislodged so I had to be "opened" again to fix the problem.

For the first moth after my latest pacemaker insertion. I had burning occasionally on the site. The doc thought it was either the result of scar tissue or just healing. It went away fortunately.

My first pacemaker lasted about 6 years. The battery was supposed to last 8-9 years. However, my paced rate is 80 so that puts additional strain on the battery since I am almost always paced for the sinus node. Moreover, since I had an AV node ablation, I am 100 percent dependent for ventricular pacing.

What brand pacemaker does your wife have? I have a St. Judes. What does the doctor say about the pain at the implant site? I would press for an answer other than sometimes it happens.

[justme]

My wife has a Medtronics of some kind. I would have to get the book to get the exact model. Hers is set for 50bpm. Her top chamber requires a 6V shock though to get it going again and that ***** alot of battery power. She was in a bad situation. The surgeon who implanted it wasn't the one who was supposed to do it. She was in the prep room most of the day as the surgeon who was supposed to do it had an emergency. I think he rushed on the placement of the lead rather than finding the best spot. They have talked about opening her up again, but she had severe complications from the insertion, they hesitate now. She ended up with collapsed lungs and fluid around the heart as well as being hospitalized for migraines. We figured out she is allergic to morphine and that is what was causing alot of the migraines (she gets them otherwise too). She asked about the site and they bascially told her it would take 2 years to heal.

[goldicedance]

What is a 6volt shock? She has a pacemaker versus a defibralater? My pacemaker is set pretty high at 80 since I seem to function better at the high rate. I also use it 100 percent of the time because of the AVNode ablation. My pacemaker is also rate sensitive--supposedly increasing my heart rate when moving around. According to my consult in October at Mayo, my pacemaker is state of the art with regard to pacing possibilities. They "tweaked" it when I was there but I think they felt like they had to do something.

Perhaps she might explore a different brand?

Keep in touch with how she is doing. She had such complications in the hospital. That's a shame.

With my second "generator" replacement, I was in the hospital for about 6 hours and then they shipped me out. The replacement is not so bad since the pacemaker pouch is already there.

Good luck to your wife and her pacemaker travails.

[justme]

The voltage that is given to the heart can be adjusted. Her top chamber is set to the highest value. It can't go any higher. I believe that the heart can actually become somewhat "immune" to the shock requiring higher voltages. Her's was set high to start with and now it is maxed. The only option now is replacement of the lead if her heart fails to respond to the shock. Her's is a pacemaker, not a defibrilator. She didn't have the high rate issues until after she had her pacemaker implanted (or at least this issue was not identified at that time).

They tweaked her's a bit too, but mainly consisted of putting it in sleeper mode at night. Between the voltage of the shock and the fact that it was pacing up to 100bpm when it shocked the heart caused her to wake up at night. It is now in sleeper mode where it paces up to a much lower number.

That's what we are hoping for future surgeries. The scary part is that the complications almost killed her. She almost died like 3 times in less than a few days. She was 30 at the time.

[goldicedance]

I finally found the reference pertaining to sinus node modification and POTs!!!

It is an article entitled, ,"Is sinus node modification appropriate for inappropriate snus tachycaradia with features of postural orthostatic tachycardia syndrome?"

Authored by WK Shen et all, it appeared in the February 2001 issue of Pacing Clinical Electrophysiology.

[goldicedance]

Justme: Have they tried setting her pacemaker with a higher heart rate minimum so that her heartrate does not have to drop to 50 bpm before it gets shocked. Like I noted earlier, mine is set at 80 bpm so that essentially I am always being paced at the sinus node in addition to the ventricular mode. Is her pacemaker rate responsive? Does she have dual leads implanted just in case?

I ask about the minimum because I was having a lot more problems initially when the pacer was set at 60 bpm because my heart rate would get tachy for a period of time and then the pacer took too long to start pacing because aof the drop in beats necessary to activate it.

Just a thought...

[justme]

Nobody has ever mentioned setting it to kick in at a higher pulse rate. I think she would literally kill me if I suggested it but I will. She has two leads. One is in her upper chamber and one is in the lower chamber. Her heart rate is all over the board and for no reason. She can be at 50 beats one minute and at 220 the next. We are at a loss of what to do next. Mayo told her she should be doing nothing but getting better, so she is slightly bitter about that. She has been living with the "it's all in your head" stuff for a long time. She has also been seeing doctors for over 3 years on all of this stuff. My concern would be that if it was set to go off more, she would need a battery replacement ALOT more often because of the level of voltage that is needed on her top chamber.

[goldicedance]

I found that the higher bpm pacing helped smooth out the rhythm and made a real big difference, particularly at night.

Does she have a rate-adjustable pacemaker?

I went this past fall to the Mayo for consultation with Dr. Low. While there I went to their Pacer Clinic and the doctors adjusted the upper end as well so that the pacer could go as high as 145 bpm if necessary to support increases in my heart rate.

I don't believe these docs when they say it is all in your head. That is like them tossing their hands up in the air and saying they don't know--that would be a better approach.

When my problem first started back in early 1994, I was hospitalized in cardiac care. My cardiologist at the time got angry with me because when I stood up for more than a second my heart rate would go sky high. His answer was that hearts aren't supposed to do that. And, then he walked away.

I changed cardiologists sometime thereafter.

[justme]

My wife "fired" one of her cardiologists for a similar reason when he was in the hospital once. They can adjust the rate when it kicks in, yes. But it is not a defib pacemaker. There is one setting. She doesn't have an option for it to kick in when her rate goes too high. The reason she has it is to keep her heart from stopping. I wish she would have had Dr. Low. She was treated by Dr. Feeley (or something like that). All I hear is how good Dr. Low is. Can't believe that they didn't send her to him.