Pace Maker Advice

Hello from Central Arkansas. I'm Angela, the big 50 on July 13th. I really would appreciate your advice knowing what you know now and your experience now. For two years I was misdiagnosed as having simple seizures because I couldn't wake up and my EEG was abnormal. Finally the doc discovered my heart rate was too low and took me off the seizure meds which were causing my problems. Thank God that is over with.

After lots of tears and tests we know I need a pace maker. My heart does not respond like it should to correct itself when the heart rate and bp goes to low. It is a communication problem, my brain is trying to kill me HA! The doctor said even with the pace maker there is a chance I will have to take meds with it SO I am trying the meds first to see if they help. If not, he will put the pm in.

So far the med keeps me dizzy and sick. I don't do well with meds in general. It has helped the sinking bad feeling but not helped the heart rate and I still feel the pain and weakness when it is messing up. The med also makes me shake. I have only been on the med a week but the quality of life has not improved. After the seizure issue I don't like meds and think they can cause other problems in the long run.

So right now I am leaning toward calling the doctor Monday and asking him to go ahead with the pm and lets just get this over with. I think in the long run the quality of every day life will be better.

What are your opinions?

Angela


5 Comments

p/m works for me

by slowhands - 2007-05-20 02:05:33

I'm on my third p/m and it works so well that I almost never even think about it. My activities are the same as if I didn't have one. One thing though, from what I've read here, it is important to have a skilled physician do the work. I have a Medtronics EnRythm and had an excellent doctor to put it in. This is in the Minneapolis area. So can you get feedback about the doctor you want to use? What with all the leads pulling loose and other problems, I wouldn't ever go to just anybody.
stillson@hotmail.com

How's little doggy Toto doing..wait, thats Kansas isn't it

by valerie - 2007-05-20 05:05:32

Hi Angela!
Pardon my corny humor (title of post: Toto, Wizard of Oz,..get it?? Not in Kansas anymore...get it?? LOL)
Anyway, I'm Valerie. I'm so sorry you went through that ordeal with the misdiagnosis.
Now, for your more current problem, what type of medication are you on (and what for, i.e. lowering BP, HR) ? How many different meds have you tried so far?
A lot of heart meds can cause you to have those symptoms you're feeling, and many people can't tolerate it (like yourself); it varies between people.
Did your doctor discuss when your new medication would "kick in" or start to work? And what meds would he be giving you after you have your pacemaker?

Well, it sounds like you have tried many meds, and none of them worked for you, so I think your decision for a pacemaker is appropriate. You are young and you have been going through this for two years, so something definitely needs to be done to help you get back to normal.
Of course, you should always consult your doctor on everything you are planning to do and make sure he understands exactly what you are feeling and have him explain his plan of action in detail. I also think that you should seek another opinion from other EPs just so you can have peace of mind that your decision is the right one... and who knows, maybe other EPs can give you another solution that's more on the conservative side (that your doctor perhaps missed or just didn't think about it yet).
I would tell you more details, but your doctor is the best bet, as I'm not a doctor.....yet......or rather.. legally. ssshhh
You see, I bought this white lab coat and now I have an underground clinic that I've been hiding for years....
LOL! i'm joking about that last part. The lab coat is actually orange. LOL I'm kidding again. Sorry, my imagination runs away from me sometimes, :)

Seriously, I hope you can get this resolved soon, and whatever you decide, we will all be here for you. You will be in my prayers.
Please keep us posted on how everything goes.
take care,
~valerie

A friendly hello

by ela-girl - 2007-05-20 11:05:11

I was curious as to the meds you've been put on recently?

I also wanted to say that we share the same birthday! I'll be the 'big' 3-0 this year! I also remember turning 13 on Friday the 13th growing up. :)

ela-girl

I am there

by tachybrady - 2007-05-20 12:05:18

My brain quit telling my heart to pace, so I have a pacemaker. This only helps the pulse, not the blood pressure. Medications are usually the preferred treatment for blood pressure, because there is little else to manage it. I have a condition that is called autonomic dysreflexia. This was caused by nerve damage, so the signals to my body that travel from my brain, down my spine, and out the abdominal area (and wherever else nerve conduction drops off the little signals) are not recieved correctly. The pacemaker has stopped my blacking out. I am not 100% paced. I have what is called a dual chamber, rate responsive, pacemaker. It goes to both the atrial and the ventricular chambers. I am not a doctor, so I do not know what to tell you specifically, I just DO NOT hear of many people with a similar problem, so I had to say hey. My autonomic dysreflexia is not spinal, as most are. It was caused by nerve damage in my abdomen. If someone tells you that is impossble, they can speak to my neurologist at Mayo, Minnesota. It took me a long time to prove this diagnososis, so I am a little touchy about it. Let me know if any other information would be helpful! One more thing. Does you blood pressure ever go up? My pulse and pressure went up and down, but no one noticed the raise, since it did not make me pass out. Check your B.P. at home, especially when you feel funny. Even with the new meds, try to see for yourself if you are up and down. This will help with diagnosis. Hang in there!

PM Advise

by Surferman - 2007-05-22 12:05:07

What "slowhands" says about seeking out the best EP/pacemaker surgeon is soo important. I had the best in Orange County, CA and have had no problems!!! I thought I wanted a guidant pacemaker until I heard about the cover-up by that company on its PM problems. I asked for a St. Jude Medical and my EP/surgeon concurred. I've heard great things about the Medtronics devices as well. I've also read that the devices with three leads are better than those with two because when two lead, one for each ventricle ,are used, there's less backup of blood in the lungs which reduces comllications. That's all I can help you with.
Best of luck and keep us posted. From "back to normal" after PM surgery three months ago. Surferman

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