need help

I have been having really high heart rates and heart rate is always jumping around. This has been going on for a while and last check-up with doctor he raised my atenolol which did not help. I have an appt scheduled for next month but over the last month is has gotten so much worse. I start feeling like I am going to pass out when it jumps around, It will drop from 150's to 70 (my pacer setting) and stay about half a minute then jump back up. It does this constantly some days all day long and makes me feel awful! It is driving me crazy and seems like it is getting so much worse. SO I broke down and called the doctor's office (I hate doing that) and asked if I could get my appt moved up and told them why. They said the doctor was too busy to see me but I could come in the morning and one of the nurses would make sure pacer is working. Well this is really not a pacemaker problem and it was just checked two months ago at my last visit but I said ok just because I am feeling SO bad but I really feel like I was just blown off. Does anyone have any experience with this at all? Should I even go in the morning when that is not the problem and I can't see my doctor? I am feeling really overwhelmed by all this and having an extremely difficult time getting through the days lately! Please help!!

12 Comments

one more thing.......

by Pookie - 2010-01-19 05:01:25

did you ever have that 2nd echo? and if so, what if anything did the doctor have to say about it?

keep on your doctor; ask point blank questions if you have to. sometime even bringing someone with you to your appointment might help the doctor want to explain everything in detail if you feel he/she is giving you the brush off.

One other thought: have you ever worn a loop or event recorder? that can give the cardiologist or EP some very valuable information as it can catch your episodes and then the doctor can't deny what you are describing.

Are you sure you aren't dealing with my doctor? LOL.

Pookie

I'm not a doctor, but...

by Pookie - 2010-01-19 05:01:48

couldn't you go see your family doctor or cardiologist (whoever is the one that can't see you right away) and ask them to lower your Atenolol or try another drug? How did you feel on the lower dose of Atenolol?

And have you ever been seen by an EP? If you haven't, I'd be getting into see one asap as they deal with heart arrhythmias.

And by the way, you are not the only one who has to jump through friggen hoops to get seen by a medical "professional" on a timely basis....I've had 5 years of it and to tell you honestly...I'm getting quite upset. So, hugs to you on that one. It's SO frustrating, isn't it????

You're right...tomorrow, by going to the pacer clinic isn't going to help (that is only my guess) as you sound like you're pretty confident with your last check and that your problem isn't pacemaker related, but, there's always a but....just as a safety net, I'd get it checked out anyways! Make sure you tell the pacemaker techs tomorrow exactly what your heart rate is doing, perhaps there is something they can do to help.

Keep the hope.

Pookie

Hmmmmm

by Pookie - 2010-01-19 06:01:19

Well then, I'm lost too. BUT, I never give up. Never. And don't you give up either.

And yes, I actually screamed at the top of my lungs today I was SO angry at our medical system!!!!!!!! I was SOOOOOOOOO frustrated.

I guess I'd ask your EP to get a 2nd opinion from another EP or another cardiologist (?) and/or see if you can get your pacemaker Rep to join in on the discussion.

You cannot be the only one with this problem!!!!!!!!!!!!

I know I had to have my Medtronic Rep present twice and both times she gave them a bit of information that was at least a little helpful.

Have you tried going to the dreaded ER when you have events like this? I'm suggesting this as a new set of eyes might pick up on something.

Pookie



pookie

by nat36 - 2010-01-19 06:01:25

about the echo...I had it at my last appt. He just said that he wanted to do another one when I go back next month. He said it was ok but wanted to keep a close eye on it since my rates are so high and can't be controlled. He doesn't ever brush me off and seemed to take it seriously. That is when I actually get to him!! He already caught it on a 24 hour monitor and saw that it was constantly going up and down. He was just baffled and said that could take it's toll on my heart if not controlled. So he is just more worried about my heart muscle playing out at some point in the future.

lol....one more thing....

by Pookie - 2010-01-19 06:01:39

do you know if you have the Rate Drop feature on your pacer? It is different from the Rate Response feature.

ask your EP!!!!!!!!

Pookie

thanks Pookie

by nat36 - 2010-01-19 06:01:43

It sounds like you are having some of the same problems getting the doctor's office to listen!! It makes me want to scream!
My pacemaker doctor is an EP specialist (this is the office I called). I always go there to get the pacemaker check-ups. I don't have a clinic for that. It is all done at my EP's office. I have been going to him every three months because of my issues. I also called my family doctor and can't get in there until Feb 5th! GEEZ!! As far as the Atenolol I already went back to my original dose because I thought that might me the problem. Raising it did not help and lowering it did not have an impact either! I am out of ideas. My EP specialist acts like he has never seen anyone else's heart do this and is not sure how to treat it. Surely there is someone else that has had this problem!
Anyway, thank you Pookie. I hope you get seen soon also!!

not sure

by nat36 - 2010-01-19 06:01:50

Rate Drop-I don't think I have that since I have such high rates all the time but I need to make sure. I know they were discussing it at one of my appts. They don't really tell me a lot!
As far as the ER goes... I have not done that lately. You usually don't get very far there either:)
I guess I will go tomorrow. It can't hurt right? I will let you know if they find anything. Thank you!!

interesting

by sam78 - 2010-01-19 10:01:22

Hi nat. Not that this will help you any, other than make you know that you are not alone, but I have had the same issue. Before I had my pacemaker I was having high heart rate, and then would convert for 30 seconds or so and then off to the races again. When I converted was when I had problems. Passed out a couple times, lightheaded at other times (when I was able to catch it before I passed out). I had a treadmill today and they caught the same dam thing with my pacemaker. Frustrating as all can be. I was in the recovery phase after my treadmill and was ticking along at my max heartrate of 125 and boom.... 70 which is my low rate. and then right back up to the 125 again. I hate it, I feel it, it feels AWEFUL!. What are they going to do about it.. I dont know? I did leave a message with the nurse to specifically have the doctor look at when this happens to see if there is something we can do to prevent this. I will let you know if I hear anything. Sorry I know that isnt help.. but you arent alone.

to sam

by nat36 - 2010-01-20 04:01:45

Sam, I was having this before the pacer also but then rates were dropping very low. At least that is better! Yes it does feel really awful!! It does help to know that other people have this also. I did not even go this morning to get my pacer checked because I know that is not the problem. That is the one thing that is working properly. Before the pacemaker this would happen every so often and now it is everyday. I don't understand why it is so much worse and I fear that my heart will just continue to decline. It is hard to have a life even though I want to enjoy everything while I'm here but I can't because I feel so bad. Then comes the depression from being so tired of feeling awful and not being able to do anything about it!
If you find out anything let me know:)

Do NOT ride in the rain!!

by FirstDuely - 2010-01-22 02:01:01

....and, oh by the way...it has been raining all week. So I am not riding my usual distances so I get out the indoor trainer...not the same. I am getting cranky (pun intended).
Question: Does your doc say it is okay to exercise? If so, are you? If doc says okay and you are not, work into it slowly and gradually increase whatever it is you like to do to exercise. I strongly urge all those that can to KEEP MOVING. I always feel better after I ride and I do ride long distances and do hills and I am tired after but I feel more alive and I do forget that I've had a pacer for going on 24 years now and I am soon to be 60.
The pacer should not limit what you do, it should only help.
Just my 25 cents worth....
Gary (again)

Do you have a phone checker-thingy?

by FirstDuely - 2010-01-22 02:01:43

You might want to just "hook yourself up" during these episodes and listen to see what the pacer is doing using your (I'm assuming all of us have one??) telephone monitoring unit. From this you will be able to see if the pm stops during these episodes or keeps ticking away at a slower rate while the heart does its own thing at a higher rate. Of course if the pm is pacing up and down then you will hear it and this would seem to indicate a pacer settings issue....which the doctor can address one way or another.
Give the doctor as much input/data as possible every chance you get. As much as I'd like to think I am the only patient he has, my doctor of over 23 years still seems at times to be overwhelmed by too many pm patients and so I sometimes feel quite alone sitting here at home.....
BTW, I'm currently having issues with my heart thinking it can beat on its own so the pacer pauses, just long enough for me to notice and then it beats again but much stronger. So what I have been doing is taking Magnesium citrate supplements along with Potassium and this seems to help even things out, especially at night. I also found that the more I exercise (I ride a road bike) the less this happens. Just a thought.....
Gary in Hemet, CA

exercise

by nat36 - 2010-01-22 02:01:43

I do not have a telephone monitoring unit but I have read about them on here. I guess I will not get one or would have already. I do know that the pacer isn't going below my set rate because it will not go lower than 70 ever. I can not exercise because of the high rates. Doctor said to be careful what I do right now. He said to walk a quarter of a mile but no more. So that is frustrating!! I just want to get my life back. I am tired of this controlling me. I want to take control!!

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