Is this normal...

Hi everyone! I am not quite sure how to preface this so I will just plunge into it...I am a 24 year old woman and had a pacemaker implanted this past Friday because of three consecutive days (if not weeks/months) of extreme bradycardia with an unknown cause. The doctor agreed to set the lower limit at 50 because I am a long distance runner and my resting heart rate is lower anyways and I didn't want it to be kicking on constantly. I am currently home resting and have been noticing since I got home from the hospital on Saturday that I am still getting dizzy, both my ears seem to plug and ring, and I get a headache when I stand up, walk for more than five minutes, and initially lay down to go to sleep (even with my eyes closed). Also I have been noticing that my breathing slows way down if I sit for too long and when I initially go to sleep, and also that I suddenly get so tired I can't keep my eyes open in the middle of the day, no matter what I am doing. Finally my hand and arm feel like they are buzzing when I initially lay down for sleep. Sorry this is such a long post but I am new to this and I was just wondering if anyone else has experienced these symptoms during recovery or if I should be concerned. Anyways thank you for reading this and I would appreciate any advice:)

11 Comments

Weird Sensations

by Many Blessings - 2012-06-13 01:06:11

Hi,

It's still real early in the game for you, so it could be anything from your body reacting to something new being introduced into your body, to a reaction to the drugs given to you during your surgery or for you to you when you went home (the Percocet they gave me to take a night made me feel like I was going crazy.) Another possibilitiy is your PM settings may need to be adjusted (it can take a few adjustments to get things right.)

Don't give up. You may be feeling weird or icky for the next couple of weeks. It takes time for your body to get used to things, and your body may still be in shock from what they did in the hospital or what is going on now with your new PM in place.

Please know you're not alone in feeling like this. All of us have been there. Don't let it freak you out. The calmer you can stay, the better. Just keep telling yourself this is all a normal part of the healing process. You're going to be okay, and all of this icky stuff will go away, it just takes time. It's own time, not yours, so you'll have to be patient (not easy for any of us.)

My hands, lower legs, and feet constantly felt like they were going to sleep or ached for about the first two weeks after my PM surgery. I also got really dizzy, felt mad & depressed about getting the PM put in (I didn't want to do it in the first place), an sometimes felt like I was going to faint. Plus I was scared at what I had done and wante the PM out NOW! LOL!

All of this is normal from what everyone told me, and the more I read from other new people, the more I know they were telling me the truth. Again, we've all been there so we're telling you the truth in saying it WILL get better. I promise you. :)

Keep asking questions on this site. It will be your life-saver! Also keep the lines of communication open with your doctors and PM tech. They can help you too. Especially your PM tech. They've seen and heard almost everything and will know what to do adustment wise, if that's the case.

Hang in there! We're all with you on this!



Ooops!

by Many Blessings - 2012-06-13 01:06:20

Please forgive all of my typos in the above comment! Guess I'm more tired than I thought and/or should have put my glasses on while typing it! I re-read it after I hit "go" and thought "Oh no" but it was too late. LOL!

That being said, bottom line is, it will get better. I promise!

why?

by arthur - 2012-06-13 01:06:52

Hi Jellybe:
I did not experience your symptoms following the surgery, but what caught my eye in your post was, "unknown cause".
I had a dual chamber pacemaker implanted in March of 2010 with 1st to 2nd degree heart block, which progressed to full heart block not too long after. The pacemaker had to be switched to full time pacing in the left ventricle.

I am also (was) a long distance runner and I was able to continue running low mileage but I had more and more trouble with breath and was feeling significant fatigue at rest.

I switched Doctors, to the U of Washington and the first thing my new Doc said was, "you are too young for this and we NEED TO KNOW WHY IT'S HAPPENING".

Turns out that her first guess was correct - Cardiac Sarcoidosis, which can radically impact the heart's conduction system and can cause sudden cardiac death. First, I'm not that young; 48 and second, the words "cardiac death" were very troubling!

I'm being treated. I had a PET Scan, Gallium/Thallium Scan; CAT Scan, Bronchoscopy and Heart Biopsy, the latter two days ago.

My point is, you need to find out why this is happening to you. You are healthy. You are experiencing numerous symptoms that may or may not be related to you electric condition.

I am getting an ICD implanted next month to protect me from the Cardiac Death thing, so I can run freely, without worry. If I had pursued the "why" earlier, I would be in a much different place today and I would have had the proper PM implanted to begin with.

You've gotta advocate for yourself!

Wishing you the best,
Arthur

A couple thoughts to supplement Arthur

by donr - 2012-06-13 08:06:50

JB: 1) You did not say where your HR normally sat! Below 50 seems a bit low, even for a runner! I have a daughter who has the same low HR from being a nutcase runner - but she's not below 50.

2) It's NOT a long post.

3) You do NOT feel your PM "Kicking on"! It sits there quietly in the background putting out pulses that make your heart run regularly. Properly adjusted, you NEVER sense it doing anything at all. It's your "Silent Partner" in life! Dunno where your EP wanted to set your PM base rate. Perhaps you should have it jacked up a bit - say to 55 or 60. Might make you feel better. BTW: they can only be set in multiples of 5. When I had my Pm planted, the EP set me at 80 - too high. I was a natural 72 all my adult life. I felt nothing except after a few days I felt constantly hyper alert due to that. Backed me down to 75 & It went away. But at least I had none of the problems you describe. Nice thing about changing a setting - they can easily be changed back!

4) At this point, I am going to guess that you bear a bit of resentment about your situation that requires a PM to be normal again - based on your comment about not wanting it constantly kicking in!

5) Arthur is correct - you may have something else causing your problems. Sudden Bradycardia is not all that uncommon, but sometimes it can have causes. Perhaps you should have some further diagnostics performed to see if they can be found. A 24, for an experienced healthy runner, you should be concerned. Too many folks your age suffer sudden cardiac arrest as Arthur pointed out. You gave us none of your health background - is there more to it that could cause us concern?

6) What Many Blessings said is also correct - but unusual as to the seriousness & extent that you describe. That alone raises my curiosity about what is happening. You should go back to your Cardio & have things checked out.

7) Your life has now changed - like having a baby, hosting a PM is FOREVER. You will have to find a way to adapt to it. But - it takes time to get over all the trauma you have experienced in the surgery. Take a normal healthy person - do all the cutting, mucking around inside your one-and-only heart, but don't insert a PM & they would have some pretty crummy feelings at this point. Too soon to make final conclusions as to how life after a PM can be.

Good luck & hope you feel better quickly.

Don

I agree

by Many Blessings - 2012-06-13 09:06:03

I totally agree with Don & Arthur above as well.

I hope it was clear in my original post, that although a lot of this is normal during the healing process, that you should ALWAYS check with your cardio docs & PM tech when you feel anything weird or troubling going on.

Again, sometimes it could be as simple as a drug change or PM adjustment, but sometimes it could be something else wrong.

Best of luck to you in finding out what is going on. Keep us posted!



Thanks!

by jellybellie9 - 2012-06-13 10:06:45

Thank you for all the responses:) And Tammy no worries about the typos I am surprised I didn't make many:) I really appreciate it and I know that it will eventually get better but it is still quite a shock. To be honest I do not really resent it because I need it to live. My comment about not wanting to to be working constantly was more aimed towards statements me doctors made that because of my age my heart may eventually heal and keep itself paced, even though the pacemaker would always be there as a safeguard. Thank you for the suggestion about raising the rate to 55, I am seeing the cardiologist this Friday and I think I may ask him, especially because I thought it was normal to feel it start working. The doctors say when I am up it rarely goes on at all, but I need it to sleep. My resting heart rate before was in the low 50s when I was really training hard but normally in the mid 50s to low 60s. My medical history is pretty complicated and this year has been a really rough year for me especially. I have a previous history of IBS, Eczema, and Raynauds. Then last May I injured my shoulder or something they think maybe I tore a nerve or something and they still aren't sure what is wrong. This has caused: headaches, chest pain, numbness in my hand and arm, muscle atrophy on that side, etc. Next in October I developed severe pain and swallowing difficulty on the left side of my neck and bells palsy on the right side of my face that eventually went bilateral. Then after being told it was in my head for a month or so, they noticed I had vocal cord paresis and an increasing amount of swelling on the left side of my throat too which they initially attributed to a tumor and so I had surgery and it turned out to be from an infection from my puppy a rare one. After somewhat recovering from that I started having stomach problems, including nausea, abdominal pain, early fullness, change in bowel habits, reflux, etc and have been for the past five months now and have lost a significant amount of weight because of it. Then I got a viral illness a month ago that they thought was mono or something but wasn't and took two weeks to leave but I had been feeling weak and dizzy since that among other things and now I have a pacemaker. They are completely stumped. I am literally being checked for everything under the sun because they have admitted they have no idea what's going on.
Arthur I am glad you are getting treatment and thank you for the hope and advice! I hope you continue to feel better!:))

Tammy: A couple of my docs have already mentioned sending me to the Cleveland Clinic so I may end up there later this month. I would love to go to U of W but it's on the other side of the country sadly:/ But thank you for the advice and I will keep you posted:)

And Don I will get it checked out this Friday and thank you very much for the advice and I hope I answered some of your questions. And I am trying to take it all in stride but as you all know at some times it is easier than at others.

Thanks again

Sandy

Try reading the book of Job...

by donr - 2012-06-13 12:06:17

...it will tell you that you are NOT alone!

Good grief - no wonder you feel as crappy as you do right now, w/ all those things in your immediate past. Much of what you are feeling is more than likely the previous problems, not the PM. At least they sounded like the current symptoms. You have to give that time to go away, also - you were one sick lady. Do you know who a major TV news personality w/ Bells Palsy is?

I know whereof you speak on the arm/hand numbness. I stopped a Jeep Cherokee doing 35 MPH w/ my right shoulder 5 yrs ago when he T-Boned us in our car & totaled it. Did something to my spine & I have had randomly occurring numbness in my left shoulder, arm & thumb & next 2 1/2 fingers from it. Annoying as the Devil.

You say that you feel particularly crappy when you start to go to sleep. If you really relax when you lie down, & you are truly fit, it is distinctly possible that your HR could drop below the 50 - or at least just above it - leading to the feeling you get. Sounds like your normal awake HR is just above the 50.

Get the PM set at 55 or 60 - I promise you that IF it is set correctly you will feel nothing. Sandy, YOU have to make the choice. If your normal HR is above 55, get it set at 60. The absolute worst it can do to you is make you feel wired & hyper alert. My experience w/ 9 yrs of a PM is that if your PM is set at the first multiple of 5 above your normal HR, you'll be fine - no hyper alert. Go to the next multiple of 5 above that & you will get that feeling. I am paced over 99% of the time in the atria & there is no sensation at all. Right now, due to Meds, my HR is reduced to about 50 - I am paved at 75. All by design.

I feel less pessimistic about your attitude toward your PM now. You came through quite negative in your first posting. This explained why - you are authorized to feel crappy at this point.

Stick w/ us, kiddo & you'll make it! To quote a man I once worked for - "You'll be wearing diamonds as big as horse flops - & just as worthless!"

Just look at all the neat answers you got from one post!

Don

causes?

by jessimay - 2012-06-15 12:06:21

I don't have a pacer yet. I go next week to set a date; my docs pretty much waited a year to move forward.

Anyways, I'm also 24 and I have had a full work up of everything and they suspect mono and or lymes as the cause for my sudden sick sinus node syndrome. It doesn't hurt to make sure nothing else is going on but it is possible a viral infection is to blame. It's crazy really to think something so common could hurt you.

Oh and on another note nerve damage isn't that crazy either. I was actually extremely sensitive to adrenaline; if I got nervous my heart rate would sky rocket to well over 200. In march they went in and cut the nerve the controls the heart rate peaking.

My point is anything is possible and getting a full work up isn't a bad idea.

Jessicya

Actually had the same symptoms

by AndreSr - 2012-06-16 06:06:06

II had my Pacer placed about 6 weeks ago. I had very similar complaints that you are having. If I bent over or moved to fast the room started spinning terribly. I had a 2nd Degree AV block brady in the 40's. They put in a dual chamber St Jude. Since my rythym was so low the doctor set me at 50. the first week after I had my pacer check with the nurse and told her of my symptoms, She turned up the voltage to 3.5 MV and increased my rate to 60 with a high rate of 120. For me it was night and day. Within a few hours my symtoms were gone and I haven't had that feeling again. They have since turned down the voltage. I have to say the dizziness when I was going through it was the worst I have ever felt. Extremely severe. Tell your pacer nurse/doctor about it.

Post doctor checkup

by jellybellie9 - 2012-06-18 04:06:30

Thank you Don and sorry if I came through pessimistically originally. I am glad you are doing better and thank you for the encouragement and no I don't know who the TV personality was I will have to look that one up:) And Andre thank you for sharing your story and I am happy they finally figured out something that worked for you as well. In accordance with all the advice I have received I talked to my doctor about everything and he had my pacemaker interrogated and it was working perfectly at 50 (only pacing 50% of the time) and they almost didn't want to turn it up, but he did to 60 anyways for a month just to try it and turned on the minus 10 feature for when I sleep so it drops to a base rate of 50 when I go to sleep. But now I have developed another problem I am extremely hypotensive now and they don't know what is causing that now ugh. But that was probably what was causing the dizziness, etc and now I am on meds for that which aren't working (my bp hasn't gone above 86/50s yet) and plus they have me drinking magnesium citrate as a last ditch effort to fix my stomach which makes me feel worse. I just want all this to get cleared up! I don't notice my pacemaker as much at least just hurts more than anything right now. Jessicya they said the same thing about mine that it could be from a viral infection but they don't know. I hope they figure out what is going on with you too! I can't imagine feeling like I did prior implantation for a whole year that must have been horrible! Hopefully you'll feel better soon afterwards at least a little:)
Thank you for the replies again:))

Sandy

Gd work at the Cardio's!

by donr - 2012-06-18 07:06:59

Sandy. Ya done good! You at least removed one variable from the equation when you had them raise your HR to 60. That will tell you a lot - one way or the other.

Sounds like you have taken the tiger by the tail & are swinging it around over your head.

You'll never find out who the woman on TV is, so I'll tell you - it's Greta van Susteran on Fox News Network. You are not alone by any stretch.

Right now my best advice is for you to make like a bat in a church belfry - just hang in there. You are on the way to making it!

Don

You know you're wired when...

Your friends want to store MP3 files on your device.

Member Quotes

I am not planning on letting any of this shorten my life. I am planning on living a long happy battery operated life. You never know maybe it will keep me alive longer. I sure know one thing I would have been dead before starting school without it.