follow-up

I went in for a follow-up today and left crying. I could not be more frustrated with everything. I went in because of a new symptom of high blood pressure issues and my doctor said well maybe you have a nervous system disorder that is causing all of your problems. He suggested an antidepressant to help stop nerve responses or something. What??? I feel like he is just grasping at this point because he just doesn't know why I am having the arrythmias and other issues. He told me he has never seen sinus node dysfunction as bad as mine but when questioned said that it shouldn't mess with my heart function. Well if he has never seen it to this degree how can he say that? I just feel like I am losing faith in him and I don't know where to go from here. I just want to feel better! He scheduled me for an echo in a week and wants to see me back in a month. I am seriously thinking of not going back at all. I guess I just need to know I am not alone today because it sure feels like I am.

13 Comments

thanks Cabg Patch

by nat36 - 2011-01-28 05:01:31

I am thinking of getting a new EP doctor or just maybe taking a break from doctors for a while. It's not like they are helping:)
I looked up Nervous System Dysfunction and that does not sound like me at all. The only reason he suggested that was because my blood pressure has been elevated lately and I have been having new and more arrythmias and he doesn't know why.
I am trying so hard to get over my emotional response but can't seem to shake this overwhelming feeling of isolation. Even though my husband was there today, he just doesn't seem to understand. He left feeling great because the doctor said this shouldn't cause heart failure and most of the time he just skirts around that issue. I am glad of that also but what about how bad I am feeling??? THanks for listening Cabg Patch!!

All I can alll to the great advice above

by janetinak - 2011-01-28 05:01:38

is that when I spent 2 yrs with my great cardio trying to get my Afib under control (meds, cardioversions) & my problem was fairly simple (persistent Afib that responded to nothing) my BP was up due to frustration with the process . When I finally accepted the suggestion which had been offered & I wanted to avoid (abalation & PM) my BP went down. I bet that is once you can get help with your problem you will feel better & they can get your BP in control.

Hope this helps,

Janet

Doctors Not Seeming To Listen

by Pookie - 2011-01-28 05:01:41

Hi Nat:)

I agree with the above posts and I totally agree with yours too. I think a lot of us have encountered a doctor that just doesn't seem to have interest in us. Perhaps it's because they have seen it so many times before that we are just another face to them and they (perhaps) want something or someone more challenging. I don't know.

I do know that if I were you, I take a very very very mild anti-depressant (even ask the pharmacist if you can cut it in half) and after you have your echo I would go back to the your uninterested doctor and have it out with him but in a polite, but firm way. Just lay it out on the line for him and say you don't feel he is listening to you or he doesn't seem to be interested or concerned about you. However, in the meantime, so you won't be doctorless (if that is a word) I would be looking for another EP for sure.

I had to do the same thing with a family doctor. All she wanted to do is fill me up with drugs and send me for tests that had nothing to do with my problem - perhaps she thought it would look like she was doing something for me. I had a frank & polite talk with her one day and I specifically remember bringing a list of things I wanted done or at least discussed...she told me "you are pissing me off!!!!!!!!!" I got up and walked out. However, in the meantime, I had found myself a new doctor and I did exactly as Patch suggested --> I actually interview her.!!! I told her I felt I wasn't being listened to and I had a long medical history that seemed to overwhelm most, I then asked her if she was up to the challenge, she said yes, and I've been with her ever since. I even get to choose if I want a 20 min appointment or a 40 min one. Just keep looking until you find one that you know you can talk openly with and they actually listen to you.

Doctors are trained to be doctors, most forget how to be considerate of the patient and how they feel when they walk out the door.

And, like mentioned, we are here to support you.

Don't give up hope. Never.

Try and enjoy your weekend and come Monday start looking for a new EP.

Hugs,
Pookie

Dr Problem

by SMITTY - 2011-01-28 05:01:53

Hello Nat,

No you are not alone. Or at least I know of one other person in somewhat the same boat as you. I got my PM in 2000 for sinus node dysfunction. I'm sure there are many other PM Club members with sinus node dysfunction (sometimes called Bradycardia-tachycardia syndrome or Sick Sinus syndrome) that have similar problems.

Let's look at what they say sinus node dysfunction can cause,

Sinus node dysfunction is a collection of heart rhythm disorders that include:

Sinus bradycardia -- slow heart rates from the natural pacemaker of the heart.

Tachycardias -- fast heart rates.

Bradycardia-tachycardia -- alternating slow and fast heart rhythms

In case you take any heart medications, here is something I found while looking for something that may help. I have never seen it spelled out in such plain language before and it was of special interest to me. "Abnormal heart rhythms are often made worse by medications such as digitalis, calcium channel blockers, beta-blockers, and anti-arrhythmics." I currently take a calcium channel blocker and have taken digitalis and several different beta blockers in the past. Not a single Dr ever told me these could cause abnormal heart rhythms.

I know none of this addresses your high BP problem. I do agree with you that the Dr was a little less forthcoming with information than he should have been and I do have to question the Dr for "He told me he has never seen sinus node dysfunction as bad as mine but when questioned said that it shouldn't mess with my heart function." I would love to know what the thinks sinus node dysfunction does. Or maybe he has a different definition for "heart function" than I do. Anyway, I do know that anxiety can cause a significant increase in BP so taking the antidepressant for a few days may help. It is not going to hurt.

That way you could use a few days to think about what your next course of action should be. You may just need to grab that Dr by the nap of the neck and tell him it is time treat you as a patient and not as an inconvenience. Or it may be time to think about looking for another Dr. Sometimes changing Dr will give us peace of mind and that in itself can often solve some of our problems.

I know I haven't really provided any help, but like I said you are not alone and for what it is worth many of us have been about ready to pull out our hair because we think the Dr is not responding to our needs.

I wish you the best,

Smitty

I meant "add" not "alll" above

by janetinak - 2011-01-28 06:01:24

Sorry, Janet

i totally understand

by veronika - 2011-01-28 06:01:25

Hi Nat, no you are not alone. I totally understand you and your frustration. I am so grateful I found these new friends and they seem to be patient in listening and giving "advice" or share their experiences. We need to believe that things will turn out better as time goes on, but there is also a limit with OUR patience with the doctors. we are not statistics, we live with this, not them. they are HEART doctors, and sometimes I think
they are so detached from the human suffering. it would be ideal to have an EP or cardiologist who has a PM and understands us. not give us the run-around,
I have started to take OMEGA 3 and eat a lot of sellerie and green stuff. my BP was shooting high and it has come down to 145/85, my heart rate is still up in the 90's. somewhere I read that a full aspirin (325 mg) is bringing BP down. anyone can confirm this or has any doctor said something about that?
keep your sense of humor, keep your head up and many of us are in the same boat. good luck and hope things improve. i hope you fly to korea in 2 weeks and see our grandson graduate. anybody has any ideas how to cope with a 12hour flight? lots of walking, an aspirin and special stockings?? suggestions anyone??
veronika

thanks everyone

by nat36 - 2011-01-29 02:01:12

Thank you all for your comments. I am feeling better today. I think I just needed to step back and take a breath. I get so emotional sometimes over all this and yesterday was one of those days! I think I just felt like he was minimizing everything I am going through which is hard to hear when you are struggling everyday just to function. I am normally a pretty happy person and not an anxious or sad person by nature. Sometimes this just gets overwhemling. It is such a heavy burden some days to carry. Thank you all for your comments. I am not sure but think I will look for another doctor.
Smitty- on the subject of heart function he was referring to my heart muscle but I had the same response as you when he said that! Then he went on to say your heart can take a lot for a very long time and the heart muscle can still function.
I guess I need to just be glad he does not think this will cause heart failure and take him at his word.

BP

by sugar - 2011-01-29 09:01:02

I never had high blood pressure until the pacemaker was put in. When I was 46 and had the ablation, they put me on paxil (I didn't know it was an antidepressant) to help regulate my very rapid heart beat along with other things. I didn't like the thought of being on it when I found out that it was an antidepressant because I thought that I am never depressed. I tried a few time to come off them and I was off to the races with the heart rates. I even went to a half and off I raced again so it was not from withdrawals because I stayed off long enough and it was the only thing that would slow down the beats. I will be on paxil for the rest of my life. I hate it if a dr. knows I am on paxil and then they ask "why am I depressed" I proceed to tell them that I am not depressed and I have been on it since heart surgery. I have negative reactions to alot of meds and this one seems to work. I don't like the implications that some medications give to other people and they know nothing about your situation.
Always checking with another specialist is a good idea and don't take what they say about antidepressants too personal. Heart patients are often on them for different reasons.
Sugar

Stick to your guns

by AmyS - 2011-01-29 09:01:18

Hi Nat,
I had the exact same experience as you with your doctor and also left in tears after being told I was having panic attacks (after my 3rd visit with him). To everyone above, don't be so quick to think it's your head or that you need medication to help you through. This is a very normal response to being told you're a loony and when everything you're feeling and saying is minimized. Until I started feeling physically better, I kept having running rehearsal conversations in my head with my doctor if I ever saw him again. Basically, if I had a chance to say over again what was said, what I would say. I felt like I was going nuts, but I just stuck to my guns and believed myself for once that the doc just wasn't right and wasn't picking up on what was wrong. Finally, as the pain subsided and any symptoms I had subsided, I felt better.

Another odd experience with my doctor was that he just seemed so primed to tell me I was stressed. Almost as if he couldn't wait for me to be stressed so he could blame everything on that. I went in for my 2nd interrogation within 9 days after the implantation bc things were still just not right. After the tech put the PM though its paces and did a lot of ventricular pacing on me, my heart rate just skyrocketed. After that, the doc came in and adjusted a few things and wondered why my heart rate was so high. I hadn't noticed it, but of course he could see it. He said, "I think your stressed" and I answered that I didn't feel stressed and truly, I had no anxiety about the PM at all (at that point). He told me he could put me on a beta blocker to bring my HR down but I refused, knowing this was not normal for me. I didn't realize til afterward that the ventricular pacing had caused the rapid HR, but I don't think he would have believed me anyway. He just had a knee-jerk response to the rapid HR and really didn't consider any other possibility.

I'm going on a bit, but it's amazing how much better you feel when someone actually believes you and listens. My husband finally believed me and listened and my mood was greatly improved. Now that my pain is gone, I feel like I can go on with my life. Get a new doc and start over. I think that would really help.

BTDTWTTS

by donr - 2011-01-29 10:01:13

Nat: Yep, Been There, Done That, Wear that Tee Shirt!

Amen! To everything posted above by the rest of this motley, though well informed, crew. We all wear your tee shirt!

Most of us are afraid to vet a Dr. When you get old & grizzled & become what in my circles is called an "Old Fahrt," you become much more bold about it. You have to find someone new. As soon as you lose faith in a Dr., they are a goner. You cannot communicate. I do not think the current one can be salvaged. You start by telling the new candidate for your employ exactly what is going on & why you want to see them. IF they don't have a wall full of diplomas, start by asking them where they went to school - undergrad, med school. Where they did their residency; fellowship, How long they've been in practice. They know ALL about you in a most intimate way; you deserve to know about them! If they are any good, they will gladly answer. If not, go somewhere else - they don't care about you as a human being. You married? Drag your husband along. My wife goes w/ me every time. Makes a big difference in how they treat you. You are now seen as a family, w/ a gimlet-eyed partner who will take time to help you & is PART of the treatment, not just another piece of meat.

The communicator does not have to be the primary doctor. A really saavy head nurse that you can connect with will work out just fine. They are close enough to what is happening w/ you & the treatment aspects of cardiology that they can really help you. Or, maybe a Physician's Assistant (PA) who works for your Cardio. Be up front w/ the cardio - tell him/her that you have anxiety problems; you do not want to medicate them away& need someone to ask questions of that has more time to interact.

Just from reading your post, your head needs treatment. Not because you are a nut, but because you are facing the harsh reality of the stress & anxiety of having heart problems. A good HN or PA who understands this can sit w/ you, allay your fears & treat your head. They have much more time to take w/ you than the cardio (or should have) and can really help.

Lemme tell you - as a 40 + yr sufferer of PTSD & an 8 yr host to a PM, anxiety issues can mimic heart problems very nicely. Drugs are not the long term answer to that issue. Anxiety can screw up your BP, heart rate, regularity. Especially if you have an underlying true physical problem.

Good luck, kiddo!

Don

new Dr

by ratsyp - 2011-01-29 12:01:17

Yep listen to everyone get a new Dr. a couple years ago I got a new one and it feels as though he cares and listens. All we would like in a Dr. The one I had before even called me by someone elses name and I heard him in the next room calling someone my name. If you can't get a name right maybe doing a surgery might be a little scary. You will find the right one. It may take homework but the Dr. is out there.
Patsy

Amen

by Zia - 2011-01-29 12:01:41

to all of the above. You all said it better than I could, so no long sermon from me!

thank you all!

by nat36 - 2011-01-31 04:01:09

I am feeling better than I did on Friday about everything. I go for my echo in two days to check heart function. I have decided if that is still normal I am taking a break from my EP for a while. I do not think I have autonomic nervous dysfunction as he suggested. My only symptoms are heart issues( which is not new) and a higher bp than usual (which is new). After looking this up it seems to affect your entire body so I feel pretty confident that is not what is going on. Therefore, I am not going to take the antidepressant as he suggested to help slow nerve responses. I feel like it is time for me to stop following blindly everything he says and start making some decisions of my own. I am still debating on looking for a new EP but for now I don't think I will see anyone for a while since as he said this is not going to kill me. Thank you all for the support!

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