NEW... trying to understand

Hello all,

I'm a 33 year old woman who had a dual lead Biotronik Cylos DR pacemaker installed on 11/18. There were complications, so I've only been home from the hospital a couple days. Now I'm trying to figure this thing out! I have Sick Sinus Syndrome. Unfortunately, it has taken many doctors a year to figure this out and how to treat it. The pacemaker was the final decision. Although I have gifted doctors, their communication skills are lacking, especially on a holiday week :)

I am having some episodes, mainly in my sleep, with extreme shaking and tremors. This is a point where I would normally wake up tachycardic in a sweat. I'm not sure if this is normal for a pacemaker or if something is wrong. Overall, as I recover, I feel more and more like my old self. I'm just a little concerned about these episodes. I know I am supposed to be set with a range of 70-140, but how is the upper rate controlled? I'm on a healthy amount of beta blockers, but more was discussed and we opted to wait and see. Wouldn't the beta blocker be controlling the tachycardia and the pacer controlling the bradycardia? Of course I have a ton of information on the pacemaker, but none of it explains these situations. Also, last night I could feel a vibration where the pacemaker is implanted. Is this the device kicking on? If someone could ease my mind, I would greatly appreciate it. This is a lot to take in right now and I don't want to over react, just get back to a functional life.

Thanks for your help,

Anna

9 Comments

Welcome Anna

by Melissa - 2009-11-27 05:11:36

Hi Anna,

I just wanted to say welcome.

I don't get on here very much, but when i do I love reading just how helpful people on this site are and how willing they are to give advice. It's nice to know that others are going through the same, or at least similar, things.

I'm 31 years old and also have SSS. I've had my PM just over a year now, and everythings going smoothly now. But when i first got my PM, I was still feeling terrible and experiencing the same symptoms as before the op, and even fainted again.

On advice from some lovely Pacemaker Club members, I got myself to an emergency ward just to get checked out. I'm glad I did.....as it turns out nothing was wrong, but they did get me in to see my cardiologist sooner and he was able to adjust my lower setting and explain a few things to me about my condition. The best thing though was getting the peace of mind that, yes my PM was working and doing it's job!

I too felt vibrations at the PM implant site in the first few months. I'm still not sure what they were, but I don't feel it anymore. I wonder if it was just my body getting used to the PM.

So, while i can actually answer your specific questions (cause i'm just not that technically-minded!), i guess my advice to you would be - if somethings's bothering you or just doesn't feel right, trust your instincts and get checked out. At the very least it will give you peace of mind...and if there is something they can fix or adjust to make you feel better, then even better!

Well, I hope you're feeling 100% in no time.

Once again, welcome!

Melissa

I Have SSS Also

by Bionic Man - 2009-11-27 05:11:44

Hello Anna,
Welcome to the Club. I also was diagnosed with SSS. I was given the pacer for brady and put on beta blockers for the tachy. The pacer is doing it's job for me. It is there to take care of the low heart rate. I still have episodes of tachy but I'm able to deal with it a lot better now. I also had Dr's that didn't know what to do. I got my pacer 18mos ago. I was 45. They didn't want to give me a pacer because they thought I was too young. I'm sure they told you the same. So I suffered for several mos until I found a Dr who said " I don't care how old you are, you need a pacer". I have mixed emotions about having one but I do feel much better than I did. I haven't had any of the episodes that your describing although each person is different. If your feeling miserable I wouldn't hesitate to call the Dr. They tried me on several beta blockers at first and some made me feel worse. So they kept trying till they found one that made me feel better.
Hang in there. Things will get better. The people on this site have been through it and will give you some great advice.
Take Care,
Bob

Welcome

by J.B. - 2009-11-27 06:11:14


Hello Annaelliott76,

Welcome to the Pacemakerr Club.

I never heard of a pacemaker causing shaking and tremors as you describe but I'm certainly not saying one will not. I would have to say that unless the settings on your pacemaker need further adjusting, the problem does not involve your pacemaker. Have you told your doctor about these and has he given you and answer?

I think you know when your natural heart rate drops below (in you case) 70 BPM the pacemaker will step in and bring back to 70. The pacemaker does not control the upper limit. As I understand it, the pacemaker continues to monitor our heart no matter what the rate and send an impulse if needed to give you a good heart beat. However, when the heart rate reaches the upper set point of the pacemaker it stops assisting the heart rate. It will continue to monitor your heart function just in case the rates drops below that upper set point and help is needed.

My experience with beta blockers is to slow the heart rate to the point we have bradycardia and then lets the manmade pacemaker bring the heart rate back to the minimum set point. By slowing the heart drastically this is supposed to prevent,or at least reduce the frequency of tachycardia. I one had a doctor that prescribed enough beta blockers to lower my heart rate from 65 to the 35 to 40 range. The intent was to put me into bradycardia for a few weeks and stop the tachycardia. It was before I had a pacemaker and it worked to a degree but this was a case of the cure begin worse than the illness.

The vibration could be caused by the pacemaker if the settings are incorrect for you. You have had your pacemaker for only 10 days, and it is not uncommon for it to take several tries to finally get the optimum settings. While the doctors may have a world of knowledge about pacemakers, when it is all said and done for many of us getting the best setting is trial and error and it becomes the patient's job to continually let the doctor know you thing something is not right.

I say don't worry about over reacting. Pacemakers are wonderful inventions and can do great things for people, but sometimes those great things are not automatic and the only way your doctor will know that something needs adjusting is it for you to tell them. so again don't worry about over reacting.

Good luck,

J.B.

cardiac contractility and betablockers

by golden_snitch - 2009-11-28 03:11:35

Hi again!

Just looked about cardiac contractility and betablockers again, and yes, betablockers do reduce the contractility (this is called "negative inotropy"). So maybe your cardio should put you on something different. If you have sinus tachycardia, then Ivabradine could be worth a try as it is a direct sinus node inhibitor; it does nothing else than slowing the sinus node down.

Best wishes
Inga

Biotronik Cylos with CLS

by golden_snitch - 2009-11-28 03:11:37

Hi Anna!

When I chose my last pacer, I was actually getting informed about the Cylos since this closed-loop stimulation (CLS) sounded quite cool (reacts to mental stress etc.). However, I was told by a cardio that he has seen patients with Biotronik Cylos pacers and they sometimes get tachycardiac in their sleep because the pacer reacts to something inappropriatly. So, it's a pacer induced tachycardia, betablockers won't help. Give the manufacturer a call and/or ask for a Biotronik rep to attend your next interrogation. Also, I'm not sure if the CLS is affected by betablockers as it works with measuring cardiac contractility, and the contractility is usually affected by betablockers (I think it goes down, but not sure about this). I asked my cardio about it, and he wasn't really sure, but thought that this could indeed be a problem.

Oh, and just one more info I want to share as this has been a problem for someone I know with a Cylos: unless your own rhythm goes above 160bpm, you won't be able to exceed this upper limit with your pacer. When CLS is switched on, it can't go faster than 160bpm because of technical issues. Just in case you ever come across this problem, for example when exercising.

Sorry, I'm not at all doing a good job in easing your mind, but I think it's better for you to know about these problems because otherwise you might need ages to find out what's wrong.

Best wishes
Inga

My Cylos DR-T

by Mayor - 2009-11-28 04:11:03

I've had my PM for just over a year now. I'm 58 and have 2:1 AV block. My settings are at 70 and 140. I run, bicycle, and have all but "forgotten" that I have this $46,000 device under my skin.

In the first few weeks after my procedure, when the site was still sore/tender, there were times when I felt what I thought was a vibration or a tingling sensation. Letting my imagination get the best of me, I wondered if a lead was loose or if there was an electrical short somewhere. My doc assured me that my device was working perfectly and that the sensations that I was experiencing were a normal part of the healing process after the procedure. Yes, it's a "simple" procedure, but there is still trauma to the tissue at the site of the implant.

I recommend participation in any research studies that your cardiology practice is involved with. It seems like you get preferred treatment whenever you call the office with a question or concern and you identify yourself as a "research patient of Dr. So-and-So." You often get more than just your own cardiologist checking in on you when you are there for a checkup.

As many others on this board will tell you, be aware of what your body is telling you and be sure to pass that info on to your doc.

Thanks for your help

by annaelliott76 - 2009-11-28 08:11:35

Thank you for all your input! This has been sooo helpful!

I currently take Inderal LA 120mg BID as a betablocker. Tachy has been well controlled with this med and dosage. Cardio suggested additional betablockers as a precaution, but we decided to see how it went with just Inderal LA. I see him on Monday to dicuss any issues and get staples out. My sister is a CCU nurse and I've had her check the inscision which looks great. I have enough antibiotics in me to kill anything that might arise (on my 4th round proactively, 2 IV and 2 oral).

As for the complications, I had a puneumothorax (sp?) as I went into recovery caused by a strange coughing fit. I was on some heavy pain meds in the hospital and wondering if this could be a morphine, etc. withdrawal going on.

Prior to PM, my range was 35 - 189. At any given moment, it could be either/or. BP was very low. Since PM was installed, I've had normal people BP (running 120/80 with a pulse of 80-90. That doesn't mean there can't be some hiccups. :)

I swear, someone should write a book entitles, "What to expect after your pacemaker"! Between 7 doctors, I know virtually nothing about this device except how the surgery is done and what the surgery is like. I already know that :)

Anna

Shaking and sweating

by ElectricFrank - 2009-11-28 12:11:25

These are symptoms of an infection. The next time you wake up with the shakes take your temperature. If it is elevated see the doc ASAP or get to ER. An infection after an implant can get into the blood stream through the slit in the blood vessel where the leads enter. This can be a risky type of infection. You didn't say what kind of complications kept you in the hospital, but that would indicate something.

frank

Update

by annaelliott76 - 2009-12-04 07:12:16

Thank you all for your advice. Just as an update to my post... shaking and tremors were from a med. Stopped the med and got rid of the symptoms. However, I ran into a new problem in the past couple days. My cardiologist added in another beta blocker when I reported a rate of 95-120 consistently... This did not fix the rate, but lowered my BP into the toilet. They just called in some Digoxin and took out he second beta blocker, keeping the Inderal LA 120mg BID. Does anyone have experience with Digoxin? What craziness can I expect from this med? I've felt all day like if I passed out or threw up, I would feel much better. Please don't tell me this one will make that worse.

You know you're wired when...

Your kids call you Cyborg.

Member Quotes

Yesterday was my first day mountain biking after my implant. I wiped out several times and everything is fine. There are sports after pacemakers!