Help! I need an Opinion

Hello everyone I have a great dilema and I need some opinions. I have a pacemaker since 2002 and ever since then my life has been a total blessing. I have felt great other than having to deal with my rate response when I am driving. It activates when hitting bumps and makes my heart race. Well anyway it helped me when I was playing basketball so I never really complained to my cardiologist. Well because of insurance purposes I was forced to switch doctors and cardiologist. The new cardiologist sent me for an echo and ekg and everything came out normal. She then sent me to a pacemaker clinic to have my pacemaker checked up. Well big mistake! I told them that I was tired (probably from working too much overtime!) and that when I drove I felt my heart kicking because of the rate response. They then started by changing my settings of the delay to allow my heart to work more. As soon as I left the clinic the next day I felt like crap and I felt it when my heart would get a kick from the pacemaker. I called the clinic back and they told me to come back in. They then did something else and I could not catch my breath and I could not play basketball! I went back again and they INCREASED my upper limit to 140! I questioned it since I have been 60 on my lower setting and 120 on my upper and I had felt great for the past 5 years. Once again I left the clinic and I felt slightly better. But I felt my heart being forced to beat faster. I then went back agin and they increased my limit even more to 160 and lowered my lower limit! to 50. I then felt really bad and called the tech at the pacemaker clinic and she kind of gave me an attitude that 50 bpm is quite normal for my age and that I should not have any different symptoms. She told me that it was all in my head and that I am the type of person who can't be told anything because I let my mind play tricks on me. In short I insisted until I went back in and she put me back to 60 but now turned of the rate response because of the really bad racing feeling in my chest. I feel better but not at what I am supposed to be. I had a holter done and my EP said it looked good. I told him that I need him to optimize my setting because I still don't feel quite right with the settings I am one. I just feel like going back to my previous cardiologist and having her set me up to my "normal" settings that I had the last time I saw her. It doesn't matter if I have to pay out of my pocket to see her since she is no longer my cardiologist. Any opinions would be greatly appreciated. I know I am not crazy (as the current pacemaker tech made me sound like) I know what I feel. Please give me some advise.
Thank you

6 Comments

settings

by luckyloo - 2007-10-16 01:10:29

it happened to me....look at my posting on pacemaker syndrome. my ep said if you are pacing in your ventricle and don't need to , you WILL feel like crap! i had to change ep's to get my settings changed. i suffered with feeling like crap for 1 1/2 yrs and my new ep fixed the problem in 5 minutes.

if they won't put your settings back i'd go back to the other ep...or demand the device rep come in and help with settings.

luckyloo

Wow!

by tcrabtree85 - 2007-10-16 01:10:41

I have been experiencing something very similar to you. They changed all of my settings at Mayo and it made me feel like crap. I think that once you have been paced most of the time your body gets adapted and use to that. So lowering the settings to have your heart kick in everyonce in a while can make you feel weaker at some points. I as you would pay out of my pocket it I had to, to go to the doctor I liked. I wonder if you can talk to your insurance company and figure out completely why you can't visit your old doctor. Also, if you would pay out of pocket to visit your doctor it may be cheaper in the long run to pay for another insurance provider that will allow you to see your old dr. The benefit to having two insurances is that you really don't have to pay out of pocket as often.
I wish you luck as you will be in my thoughts. Please tell us what you decide.

Tammy

All in your head?!?!

by deb1may - 2007-10-16 09:10:31

All of your mechanical problems aside, I was so glad to see you say at the end of your posting that "it's not in my head, I know how I feel!" Don't ever forget that! You are a human being, not just a heart with a pm. You have had your pm a long time and your body even longer, and you know yourself and how you feel better than anyone else. It's good to see that you are willing to do whatever you need to do to feel better, because in the long run your physical and emotional well-being are a lot more important than the price of a doctor's appointment. I hope you are feeling better soon!

Debbie

Opinion

by Vai - 2007-10-16 12:10:14

Hi. Your case description is interesting. It looks like a case where the doctors should not have change the "original" settings that you were comfortable with. I suggest that you get the interrogation report of your "original" PM settings and show them to your new EP. If you are comfortable with it, request they set it to the same specifications or parameters. At least that should be the baseline for you.
I do not have your similar experience. However I have had my EP for 1.5 years now and he always check how I feel with the settings. He is a strong advocate of maintaining status quo and not make unnecessary changes as long as I (his patient) is comfortable with the settings. There will always be the individual quirks now & then with the heart (and the PM), and the temptation is to tweak the PM to optimize. Often it turns out to be foolish as your experience show.
Wish you luck.

I totally agree with Karen's comment

by LDHAND - 2007-10-21 05:10:05

I too have had to suffer at the hands of these device techs and doctors. I have always been very attuned to what I felt in my body. Not everyone is as sensitive. I have had many changes in my settings as well, and even if nothing is changed at an appointment, just the reading with the sensing magnet leaves me in pain for the rest of the day!

I don't know why they always think it's in our heads. I am fortunate that it didn't take too many clinic visits to get things set right. One of the things that I would recommend, is to have them let you do some kind of movement to get your heart rate up some, and have them re-check their settings after that. I asked my tech in the device clinic to let me speed walk in a back hallway to get my heart rate up, because that's when I was having symptoms. Thank God they listened to me, because they discovered that I was Winky-Bocking (not sure of spelling?) when I exerted myself, and they were able to change some settings that really made a huge difference for me. So, speak up! Even if they get tired of hearing from you. YOU are the one who has to live with this every day of your life! We are the ones that keep them in business, don't let them ever forget that!

I suffer from a chronic (over 10 years) pain syndrome in addition to my heart issues, and I have to take very strong pain medicine every day. I battled with doctors for over two years to find one that would really listen to me and treat me like a human being who deserved proper pain relief, and trusted that it wasn't all in my head.

I have had to be admitted to the hospital many times for several reasons during this same ten year period, and because I am on so many meds, I am always asked to bring in all of my bottles so that they can make certain that they don't give me something that would cause an interaction. Ok, that's fine, I don't mind taking them in. However, what I do mind is the same "third degree interrogation" that they give me after they read the labels on my bottles. It's always the same hassle! "Why are you taking all this medicine? What could possibly be so wrong with you that you would need all of this medicine? Who prescribed this for you? ...and so on, and so on. It's rediculous! I see the same doctor every single month just for a med check. I get all of my meds at the same pharmacy, and I always go to the same hospital. They have all of my medical records, cat scans, mri's, x-rays, test results, reports, etc. If they took the time to read my chart, they would know exactly what's wrong with me and why I'm on this medicine. It makes me want to scream sometimes. I wouldn't wish this kind of pain, or the feeling of being sub-human on anyone, but I wish there was a way for them to feel what I go through for just one day, so that they would understand how I feel.

Sorry if I went on a rant there, but I belong to another online club for people with chronic pain, and it's amazing how similarly we are treated by certain people in the medical industry.

I hope that they are able to help you, even if they can just reset things back to the way your other doctor had them. You shouldn't have to pay extra to go back to your other doctor. It isn't your fault that your old doctor no longer accepts your insurance. If the new doctor's staff doesn't want to listen to or help you, I have found it very helpful to contact my insurance company and tell them about my experience, and that they are refusing to treat me fairly, and are denying me the proper care that I deserve. I've done this twice before, and it really staightens them out quickly. It is our "legal right" to be treated fairly, to be listened to, and to be taken seriously by our medical staff.

DON'T LET THEM BULLY YOU!

good luck to all of you in similar situations!

Lisa

All in Your Head

by ElectricFrank - 2007-11-24 12:11:54

I'm not trying to justify the lack of caring by the "all in your head" docs, but there are some things to consider.
1. Heart rhythm is affected by emotional stimulus. Just recall what happens to our heart beat when we have a close call. I have seen the ECG traces of astronauts when something goes wrong and even they can have some wild arrhythmias
2. We are very sensitive to our own heart activity. Even a few skipped beats can make us wonder if we are dying.
3. A common situation is for a person to have an unusual beat pattern, which increases anxiety, which makes the arrhythmia worse, and around we go even to the point of passing out. The label is anxiety/panic attack.
4. After getting a pacemaker we are naturally more sensitive to our heart feelings.
5. Personally, I would rather find the problem to be psychological than to have a "real" problem. I would much rather have that than surgery or a batch of drugs.
6. None of this says that we are crazy just because it is something in our head.
7. And finally I understand that doctors do a terrible job of dealing with our feelings and fears. They don't know how to handle them in their own lives or their patients so they get out of the room as quickly as possible.

Keep pacing!

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