Worst months ever!

I was working and a graduate student until Labor Day. I have never felt the same since. After two hospital stays nobody seems to be able to give me a straight diagnosis. Still, I experience the following symptoms:
▪Terrible nights sleeping. I can feel my heart rate accelerate with any change in position. At times, feels like my heart is beating irregular, or pauses for a moment
▪Tired / fatigued. Some days I sleep all day
▪Significant drop in activity level. Walking slowly I get winded and short of breath
▪Palpitations are strong and intense. Makes me “shaky” at times and wears me out.
▪Skin color is pale to pasty at times
▪Sitting or walking my lower legs gets heavy and tight. No visual swelling
▪With effort having to inhale deeply to get enough air into my lungs and attempt to receive a satisfying breath. It wears me out and I get fatigued
▪Lying down my heart rate ranges from the 40’s to 60’s. Standing my HR ranges from 80’s to 90’s.

Crazy thing is I was fine up until Labor Day. Nobody can tell me why this is happening.

I have seen an autonomic specialist who says I am fine in his area of expertise. After a cardiac MRI, holter monitor, echo, stress test all came back fine.....my 21 day event monitor has shown low heart rates, frequent PVC's, with episodes of sinus tach.

My EP doctor wants to put in a pacemaker. He told me the pacemaker will help the slow heart rate but not help alleviate the other symptoms or fast heart rate. GREAT!!


I really don't know what to expect or what to do. I just had my first year wedding anniversary. I am scared to think that I may not be able to grow old with my wife! I am only 34 years old. Can people live there normal life span with a pacemaker?


10 Comments

Life With Pacemakerf

by ted - 2007-10-26 09:10:31

Sorry to hear about all your medical issues. With all of the doctors that you are seeing, I doubt that anyone here would be competent to tell you what is happening, or why.
I can say that many of us here are living normal lives with pacemakers. I knew a few people who were told to get a pacemaker but didn't heed their doctor's advice. They are no longer with us. It's much better to live with a pacemaker than to risk your life without one, Best of luck to you.

Hello Buster

by pacergirl - 2007-10-26 10:10:06

Dear Buster,
I feel your weariness.... I really do. I was suffering with many of the same things you are. It came on sudden like and POW! I had heart issues. I was the always the get it done fast and perfectly, kinda of woman. Then just like that my life changed overnight. I could hardly get up the stairs to crawl into bed. My fast paced life came to a screeching halt! I had no desire to do anything. I went to many drs. and then finally one decided to check out my heart. I looked perfectly healthy except for the pasty pale color and huge black circles under my eyes. I was suffering from Heart Block, irregular heart beats, and I had developed a heart murmur. So a pacemaker was the choice for me. I have also now developed the rapid out of control heart rates of 140-145 after the pacer implant. It is now controlled with medications.
Here is the good news. I am alive, a healthy American woman whom let's just say is back to a very normal active life in every way. I ride horses, work full time, travel internationally, take care of my family and enjoy many other activities. I can only tell you how I was going downhill fast and only with the intervention of the cardiologist which saved me from ... well you can figure that out.
No matter what you decide be sure to make an informed decision. Get all the information you can gather and then you will know what is right for you.
I wish you all the best.
Your pacer friend, susan/pacergirl

Bad Times

by SMITTY - 2007-10-26 10:10:37

Hey Buster,

I'm really glad you posted your message. You got a reply from a one of the long-timers here and we had not heard from Ted in sometime. It was good to hear him speak up again as many of us have gotten very, very good advice from Ted.

I agree, for what that is worth, with every thing he said. With the list of symptoms you presented, I doubt there is any one item that will get rid of all your symptoms. Most likely you will have to take them one at a time and I think the doctor has given you some real sound advice. I know from experience that a pacemaker can stop a slow heart rate. With a faster and more stable heart rate it may be that some of the other symptoms will just go away.

Since you have to start someplace I say take the good doctors advice get the PM and see what your next step will be, before you no longer have any options. Get the PM and eliminate the slow heart rate, then there are medications that can slow a fast heart rate. But you have to get rid of the slow HR with the PM first as these medications, without the PM, would make the slow HR slower and I don't think that would be in your best interest.

Please let us know how things go.

Good luck

Smitty

buster

by jessie - 2007-10-26 11:10:26

all this good advice will only prompt you to make an informed decision for you. i can only tell you life is so much better for me. you are only 34 but you can have many good years ahead of you. so best of luck welcome to the club and know we are here through thick and thin. take care jessie

PM = Better Life

by ela-girl - 2007-10-27 01:10:26

Hi, Buster!

I just wanted to say that my life is so much more normal since having the pm implanted. So, if you are worried about that, I think it is almost needless. My pm gave me my life back. It didn't worsen the quality of my life or something. Congrats on the 1 year anniversary, too. The pm will help to make sure that you have many more. I'm 30 and it has made sure that I was around for many celebrations this past year--including anniversary six!

Keep us posted-
ela-girl

Hi Buster

by Vicki - 2007-10-27 02:10:49

I'm no expert by any means and the others who have replied to you know far more than me. I got my PM in an emergency situation in July. I went to the ER with many of the symptoms you describe above. Since I have tachycardia due to two leaking valves I thought at the time my heart was beating hard and rapidly. Didn't take my pulse. Was I shocked to learn that I had the opposite problem. I was in complete heart block and had a very low heart rate. The hard feeling I was having was coming from the ventricles doing all the work. Anyway, since getting the PM, many of the symptoms that you have now have disappeared. I still have other heart issues and will have to have my mitral valve and perhaps tricuspid valve replaced sometime in the next year or so but I don't have the weakness in the legs, the feeling of extreme fatigue and that I am going to faint and that pasty white look. The PM will control your low heart rate, it won't control the rapid. One out of two ain't bad. And by the way, I forget sometimes that I have it. It's a wonderful invention. It will help you greatly and the implant process is quick and easy. At least it was for me.

Good luck.
Vicki

Out of the blue

by janetinak - 2007-10-27 03:10:57

I had a lot of the same symptoms which were caused by Atrial Fibrillation, very fast rate with severe SOB, tired & no energy,etc. Folks told me that I looked like I was going to go "Code Blue" most of time. I went the PM rate with an ablation to make me 100% PM dependent. My heart rate is set @ 70-120 depending on my activity.I am older than you but have had the PM for seven years & feel great & have a lot of energy & can do whatever I want as long as my arthritis lets me. The cardiac problems are solved as far as I am concerned. I feel like I got my life back. Good luck in your decision but I wouldn't let the PM issue scare you too much. It is a life change but one for the better in my opinion.

Janet

Hi Buster,

by Gellia2 - 2007-10-27 07:10:23

Not much I can add to all the rest except that I've had a pacemaker for 32 years now and can honestly say I've lived, and still am living, a pretty normal life. NO FEAR!
All the best to you,
Gellia

If it Quacks Like a Duck....

by dcrojas - 2007-10-28 12:10:08

I had a PM put in about 6 weeks ago. When I read your list of symptoms It was like reading my own. When I asked my EP if he was sure about his diagnosis he told me, "If it Quacks like a duck, walks like a duck then we better shoot it before it flies away". If anyone was ever in denial about his symptoms it was me, I tried to rationalize them away for months but they wouldn't go away. 6 weeks after my surgery my symptoms are gone and I'm feeling better, and starting to work my way back. A pacemaker does change your life no doubt about that. But if you read through the posts in this group you'll find that it's changed most people's lives for the better.
Get all the info you need, ask your doctors all the questions you need to and make a decision that you're comfortable with. But remember if it Quacks like a Duck....
Welcome to the group this is a great place with lots of hard earned knowledge from lots of great people willing to share it. Let us know how things go.
DC

Just a thought

by ElectricFrank - 2007-11-24 10:11:25

After over 3 years of great pacemaker operation I started developing similar symptoms in the same time frame as you mention. An increase in the number of PVC's and missed beats. It finally reached the point where I was skipping as many as 4 beats in a row. The Medtronic rep increased the ventricle voltage which stopped the missed beats, but increased the number of PVC's.
There seems to be an increase in the number of similar cases with no definite reason.
Could it be another of the problems with imported and uncontrolled food products? Or there is the possibility of the growing incidence of the staph infection that has hit athletes and school kids. It could be anything from a virus or bacterial infect to some neurotoxin. Medicine never considers anything like this until a large outbreak is documented. This is only speculation, but I wonder.
My only concern with a pacemaker at this point is that it would mask the real cause.

good luck. I understand what you are going through.

frank

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