Getting BIOTRONIK evia soon

Hi, I am getting a Biotronik Evia pacemaker soon - waiting for scheduler but probably in Oct. I have dysautonomia and my heart rate often goes into the low to mid 40. I can only get it up to 90 after an hour on an exercise bike. Medications don't sustain the rate so my cardiologist has suggested the pacemaker. From what I understand this pacemaker responds to both heart rate and blood pressure - which is good since my autonomic nervous system is faulty.

Anyone with this pacemaker ( or anyone else) do you have any advice on what to expect; tips that make the adjustment easier. I am 49. Thank you.

5 Comments

I have the same thing!

by ElizabethR - 2013-09-01 09:09:03

I just got a Biotronik PM put in on August 15th. I have dysautonomia as well. I'm 29 and active duty military, so this illness had really thrown a big kink in my day to day life. The surgery itself was pretty simple. Sedation doesn't do much for me, so I ended up needing so much that I had to be on oxygen for quite a whole when I got out of surgery and into recovery. Nothing terrible though. Mine was place under my pectoral muscle because I'm relatively young and active, and very thin skinned. For the first couple of days it felt like I had an elephant sitting on my chest. The inside of my armpit as well as the inside of my bicep ached for a week straight. It's been just over two weeks and in feeling okay. I cleaned my house for 2 hours today and I can definitely tell that I over did it a bit, so just be sure to pace yourself.

I'd love to say that it magically made my autonomic system behave, but to be honest, I feel sort of the same. I still have palpitations and get very tired very easily. My doctor said its still early and the CLS is still calibrating so to give it time. And he did say with autonomic dysfunction, it's going to be hard to get back to what it should be. But I'm still hopeful and I guess I feel a little better knowing that my heart rate is where it should be finally.

I wish you all the luck in the world. If you have any questions or concerns, please feel free to ask me. I'm still healing so I may not have a whole lot of answers, but I can definitely sympathize!

thank you for responses

by ladybug55 - 2013-09-01 11:09:06

Kathy and Elizabeth, Thank you for the information. I am hopeful the pacemaker will give me more energy as operating with bradycardia can be tiring. I wonder about all the symptoms of dysautonomia too Elizabeth but wonder if once recovery from surgery and settings are right if you will see more improvement. My doctor - Dr. Grubb in Toledo - is hopeful it will at least diminish some if the symptoms for me. You and I sound very similar with our reasons for getting pacemaker.

Oh- I read your other posts- Dr. Grubb told me the Biotronik is approved in other countries for MRI and should be approved here in 6 months or so by FDA.
Thank you again for responding.

I have a Medtronic PM

by KAG - 2013-09-01 12:09:17

and have total AV block. Got mine in Jun 2013. I'm 58. Since I went from 50% to 100% AV block in about 3 weeks I didn't have much time to think about it before hand. However in looking back it was a very good thing I got it. I was having SOB and fatigue when exerting and now I'm back to my normal activities. I'd say the first week I took tylenol for about 4 days and was sore from the surgery. I wore a sling for a few nights. It's important to keep your elbow below shoulder level and not lift more than 10lbs with your device side arm. The length of time is debatable but you'll get instructions from the medical staff. At about 2 weeks I started to do some activity and tried to get back to my normal routine as much as possible. I added a bit of time since I'm totally PM dependent and waited until 4 weeks to lift my arm and 6 weeks until I walked my two large dogs (they walk OK unless a bunny crosses our path). It is very important to move the arm as much as is comfortable though to prevent shoulder problems from lack of use. Get back to your normal routine and activities as soon as you can.

I think it's also very important to get your device info on mode, settings etc... When they do an interrogation ask for the data printout. That way if you have questions you can ask the people on this site for advice and suggestions on your settings. They will program your device to settings which for most people are fine but since you're younger and probably more active they may need to tune the settings to support your activity level. I was having SOB and fatique when exerting and I had to have my upper tracking rate increased which fixed the problem.

You can also do a search in the upper right corner of the site on new member or new pacemacker and see many posts on the topic.

All the best and I think you've found a great site to come to for support. There are so many people with many different experiences and conditions who can help you with any questions or concerns you might have.

Kathy

Dysautonomia

by ladybug55 - 2013-09-02 11:09:50

Elizabeth, I totally understand feeling weird at a pulse of 112. I have said to my doctor twice now I am not used to a rate anywhere "normal" so please keep that in mind when setting the limits ( if that is the right word). It is almost 11p.m. and I am pretty high for me at 50 bpm but usually I am lower at this point. I could not imagine 112 even after exercise. My rate also drops quickly once I stop exercising.
Thank you again for responding. I don't expect it to be horrible surgery but I know with anything ( including just mild infections) and dysautonomia it can rattle our systems for a bit.....so not expecting to be up and running right away. But if it gives me less crash days and more energy that would be amazing.

Look forward to your updates.

Dysautonomia

by ElizabethR - 2013-09-02 12:09:43

Bradycardia is/was my main symptom, or at least the most bothersome. My pulse was usually around 40 and my heart rate didnt get even remotely high enough during my stress test. And once I stopped the stress test, my heart rate was back down to 40 within 58 seconds. I'm still not sure what all of that means, only that it meant I needed a PM! I just got diagnosed in April after 3 years of feeling like I was going crazy having doctors tell me I was in perfect health! Oye. I think it may also be that I'm just not used to having a pulse yet, as strange as that sounds. The week after surgery, my heart rate got up to 112 after just taking a quick walk to the car. I got so nervous, I asked my doctor and he told me that it was normal for your heart rate to go up while walking, which I knew, so I felt a little dumb, but I guess it's just a very weird sensation to get used to.

My incision is healing well. The biggest issue was that I'm allergic to all adhesive, even paper tape, so I had a big red, scaly, itchy rash all around the incision from the bandage that was on for 24 hours. I still have not been able to put my normal lotion on yet either. It's pretty much healed now, but it's been a long itchy 2 weeks to get to this point. So if you're allergic to latex or adhesive, etc. see if your doc has other options.

One thing I'm dealing with is my left arm and hand are a little swollen and discolored (they're noticeably darker than my right side). The swelling is minimal, so my doc is just keeping an eye on it, but it my be a blood clot. We shall see. If you experience the same thing, be sure to tell your doc asap!

Oh, and the hardest thing for me has been sleeping on my back. I'm usually a stomach sleeper with my hands above my head, so the technician suggested I sleep with my arm in a sling to prevent me from lifting it above my head during my sleep. Needless to say I have not slept very well since the surgery. Which, now that I think about it, may actually be why I'm still feeling tired!

I will definitely keep you up to date with any changes or how long it takes before I really feel a difference and if so how much.

Not going to lie, it's been a long 2 weeks. But nothing we can't handle. You'll do great!

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I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.