It's All So Relative Isn't It

[morgan617]

I got a pace maker a little over a year ago. I am very sensitive to it, meaning, I can feel when it fires in the ventricles, and when it runs a check on itself every day, I can also feel that. It is programmed to do it at 11 pm.

It has gradually gotten better, as far as symptoms when it's testing, but a few nights ago, I didn't feel it all, nor the last 2 nights. When I saw my cardio in November, I asked for an echo (he refused) and tried to explain that I was having some new really weird arryhtmia, that, although not overly fast, was making me very sick. Sweating (I do not sweat at all, as a rule) light headedness, nausea etc. Typically my arrythmias are more of a nuisance than anything that makes me sick. I was informed that when my rate went to 180 or above and was sustained, my pacer would record it and then and only then would he discuss them with me. I told him as symptomatic as I was starting to get, he would be discussing it with me at my autopsy. He laughed at me.

I have developed swelling, weight gain, and a hacky cough, indicative of heart failure (not surprising after years of hypertension) which I think is part of the reason I am not tolerating rythyms well. My pcp finally agreed to get an echo when he realized my cardio just didn't want any part of me, except my pacer. That is Monday.

Today, I called the pacer clinic, and told them about not feeling the testing. So they had me do an interrogation. You call over the phone and put a special magnet on your pacer and this machine takes all the info and transfers it to them.

I got a call from the nurse, who said my rate has been jumping above 120 (der) but the pacer checked out fine. I had lots of arrythmias, but since I had nothing sustained at 180 or above, I was fine. I told her I was not fine, as I am getting really symptomatic with them and she talked like a fricken robot.

So my point here is...and I do have one...who decides whether you are symptomatic and what will make you symptomatic, and what one person may not even notice, another person may feel horrible with?

Since it's relative, should I be ignored, because someone else might be asymptomatic, and I'm not? If you are supposed to be asymptomatic and some rythyms are "benign" does that mean if you fall on your face and get really sick, it shouldn't be treated, because a "normal" person wouldn't do it? Just wondering about this. idofeelitmorgan

[Sophia3]

Morgan,

Well, it's annoying to try to EXPLAIN to docs what we feel..and how to make them GET IT.

The satirical part of me would like to say "the doctor that's on the floor after I shot him, did NOT GET IT" but I know that is not an acceptable answer.

I am sorry I do not have an answer for you but wanted to say I am glad you are getting an echo. Is it a stress echo? or regular echo?

[morgan617]

Thanks sophia, I felt like shooting him. Just a regular one. I'm sure it will be normal and then he'll be grumpy, but I can be grumpier than anyone, just ask the hubs and kids...

[MomtoGiuliana]

I'm so sorry you aren't getting good follow up and explanations. This is so frustrating. I have similar questions as I have had an increase in irregularities. I have episodes that last 10 seconds or so and give me symptoms including sweating, light-headedness. I told my specialist (who is a POTS expert and I trust greatly) and he was totally unconcerned and does not feel further testing or anything is needed. I just hope he is right. It's one thing to have palpitations, but when they are accompanied by symptoms and last longer than a second or two, it is disturbing.

[Angelika_23]

Oh Morgan,

I am so sorry you are going through this. It is so easy for these medical people to totally disregard things that don't fit in the box. They aren't the ones living with these issues. There are so many of us so frustrated with the lack of understanding and caring in our doctors. What can we do to make them "get it"?

Unfortunately, we are not "normal" here, or we wouldn't be here on this board. We all understand this, but our doctors usually don't.

I don't have any advice for you. I can only say I am here, and I will keep you in my thoughts and prayers. I have no doubt you are feeling it, and hopefully you will get some help soon.

((((HUGS))))

Angela

[Guest tearose]

Yeah, morgan, it sounds like they keep the blinders on now that you have the pacer. Like they think you should be all "okay" now that you are "fixed"???? They should have suggested to you to call in to that center. Good thing you did. Just keep on top of this morgan.

To answer your question...NO you must not be ignored. You must be educated and taken seriously. If this problem does not go away, you must diplomatically bring it up again.

You ask about who says when it is "symptomatic" or not...well, you must bring your pen and paper into the cardios office and ask for the list and get the answers and write these down. Ask point blank..how could my symptoms be okay when having fast rates, sweating, arrythmias.

Make sure you ask how you will know IF you are in danger. How much fluid retention is okay? We have symptoms that overlap with other malfunctioning systems and we need to know what we can do to help ourself AND we need to know when we are to seek help.

Please call and tell the dr, that you want peace of mind that you are okay so you can get on with living life again...

(I don't know morgan...do you?...if someone has a pacer and lots of arrythmias are they going to want to consider new meds or a defibrillator?)

I hope is a better more wonderful new year for you...

best regards,

tearose

[morgan617]

Tearose, my primary wants me to get a defribillator, as he is convinced one day these will be lethal, but the cardio just flat refuses. To even give me an event monitor. They did interrogate my pacer and it's showing weird stuff, but it's not 180 and sustained, so I can't have symptoms, the nurses words, not mine. That isn't "just a tachycardia", it's some weird rythm that is making me sick, but she disagrees, even though they haven't seen it.

Yesterday, the echo tech said, it looks like everything is okay. I think she expected me to do cartwheels, and it's not that I want something wrong, but I do want a reason for feeling so bad. I know most of you get that.

The interesting thing is, she said, have they bothered to look at your kidney function? So an echo tech is more on top of things than my doctors. I have been trying to get a referral for 6 months. Even though I have preferred insurance, the specialists won't see anyone without one. My primary talked to a couple of them and they said, it can't be renal, no reason to see her. Another diagnosis without seeing me or looking at my chart or blood work, which does indicate renal involvement. Scaredy cats, afraid they may have to say they don't know.....Sorry, to any doctors I may offend, I am pretty disappointed and sick right now....morgan

[Maxine]

The nurse is way out of line-----(if only you could slap them---just once), and she is making a diagnoses that nothing could be wrong based on your heart rate not being 180 bpm at a particular time and place. A rythm disturbance can still happen without a HR of 180. A person could have a heart attack 30 minutes before an EKG, and the heart rythm could show as "normal" when the EKG is done. I think a loop recorder would be helpful to find out what's going on. I had no problem having mine put in as far as insurance goes.

Unfortunately all it caught was an abnormlly fast heart rate, and PVCs and PACs. the really bad disturbance happened once when I had pushed myself too far one day, and I didn't push the button properly to records it, as it wasn't recorded. I would only get those THUD< THUD< THUD beats rarely, that is why a long term loop recorder was put in. We never caught one, and now the battery is gone in the lop recorder, and it needs to be removed.

Maybe the ECHO tech. should get into medical school, sounds like she might have the ability to look outside of the "little safe box". Your cardiologist sure isn't going there.............

By no means am I bashing doctors, and there are plenty of nurses out there that are fabulous----but unfortunately it seems the bad outweigh the good. It's very sad, and it's especially bad that EGO has a lot to do with it. I'm proud of the doctors who can step up to the plate and say, "I don't know, but I'll be happy to help you find out what it could be". It would make a person fall over with glee.

I hope you can find someone to help you Morgan, this is BULLROAR.

Maxine :0)

[masumeh]

Obviously the patient is the best judge of what he/she is feeling and experiencing on a phenomological level. But maybe the nurse or whoever else is making you feel invalidated in your complaints means something different than what you are interpreting. I mean, maybe they are not trying to say that you aren't feeling well, but just that there is nothing about the cardiological events that is causing what you are feeling. They could be wrong...you should see another doctor maybe, or have some further investigations done somehow. Could you have a virus, recent sleep problems, stress or other factors that might be antagonizing your overall symptoms and compromising your body's ability to cope with the (according to them) normal range of tachy, arythmias, etc.? I mean, are they saying it's not different from before, so it's maybe some other cause, not visible in the cardiological tests or maybe not directly linked to the arythmia and palpitations? This disease just has so many faces, so many culprits behind the scenes....the heart rate and rythm is suppose to be telltale, but it's not the whole story and I think it often isn't even part of the story during a flare up, or the beginning of one.

Well...just some ideas to think from another perspective about the conflict. Doesn't change the symptoms your feeling, I know. I hope you find some relief somehow. Think about it from all angles though. I often find that flare ups are related to sleep for me. But it sounds like you feel that this is more than a normal flare up. Hope you get some answers soon.

masumeh

[morgan617]

mesumeh, they don't deny I'm not feeling well, they just say it can't possibly be from my heart, as my rate doesn't go as high as 180 and stay there, and my runs of v-tach are benign. I have a pace maker and therefore, it has to be something else. Maybe it is something else, but they are completely invalidating that I could be symptomatic from arrythmias that don't bother other people.

I think we are too complex for them to make judgements like that, and that is what annoys me. I have more than POTS going on, so don't deny that many factors can be involved in feeling worse, but I can't discount that I no longer tolerate even minor arrythmias. I just think they should be a bit more open minded. I try to look at everything from 360 degrees, out of necessity. But if I cut my arm off, I'm going to guess it's what's causing the intense pain I'm in, and therefore, if I am having a lot of arrythmias and feel like hello, I will also guess it's from those. Why I am having so many more arrythmias is a different ball of wax.....I have been dealing with this office for awhile, I never call them, as a rule, because it's been pretty useless. I will be asking the manager if I can switch to a regular cardio (I see an electrophysiologist, how ironic is that) but most of the offices here won't let you switch doctors in the group. We'll see. But thanks for your input. Thanks for everyone's input. morgan

[goldicedance]

Morgan,

You and I are in the same boat with regard to pacers and ablation. I had to get my pacer when I developed bradycardia following a sinus node ablation back in 1996, before POTS became to come into its own. For the next two years, I could feel every heartbeat, etc--some felt really strange. My EP doctor did his darnedest to get the adjustments right. What seemed to help the most was when I go my AV node ablated. While that made me totally dependent on the pacer, it also got rid of the junctional tachycardia. I still get some bigeminy but that is nothing to what life was like before the AV node ablation.

Also, is your top rate set high enough? or, too high?

Finally, I believe that virtually all of us here are more aware of our heart and can feel its beats much more closely and discernible than the non-POTS person. I try not to focus on my heart beats or the beating as I would go bonkers.

Lois

[morgan617]

Hi Lois, my primary thinks the ablation caused my need for the pacer too. I am set at 60-150. It's set only to record rythyms 180 or above, and only if sustained. I have had arrythmias since I was in my 20's, so I am very familiar with them. It's only when a new one, or one that causes significant symptoms, develops, that I wonder about it.

I think if I worried about every one I felt, I would be a very busy girl! LOL. My new occupation.

The weird thing , with this newest one is, I can't feel it! I know it's there from the symptoms I am getting. I feel just horrid and couldn't figure out what the deal was and thought , well it can't be my heart, or I would feel it. Just to be sure, I listened and HEARD it. So did my son and hubs. It was a galloping sort of thing. Not up to 180, but pretty flippin weird. The rest of them are no problem, but this thing knocks me on my rear every time it happens. It would just be nice to know what it is.

I think you are right, we are very sensitive to our beats, more so than most people, just like we are with meds. No one will touch me with ablation again. It will not even come up in conversation. I sometimes think, at this point, there could be a lot worse things than being completely pacer dependent! morgan

[goldicedance]

You're right, Morgan. Have you had junctional tachycardia? For me, that developed about 2 years after the lst ablation and the pacer. Frankfully, while I am pacer dependent, I do feel better after I got rid of that junctional tachycardia. I am paced at 84. I cannot do telephone checks...in person only.

Lois

[morgan617]

I do have some junctional beats, but if there's even the slightest blip, they say, nope it's all sinus. Funny how that wasn't true when I worked on a cardiac floor. When my rate was dropping to 30, I was having juctional escape beats and the doctor said it was all sinus. When I got a copy of the strips, that wasn't true. So, I am not sure. I would have to get every recording of every ekg or whatever I've had done, but since they just see what they want to anyway, It wouldn't really matter.

The pits, but the way it is. I do know rhythms (although I can't spell it anymore) but when I worked on a cardiac floor, we had extensive training. My doctors just don't give a rip whether they lie to me or not. It's easier to gloss it over than try and treat it. I am used to it, so not sure why this has bugged me so much, but I just hate being lied to. morgan

[Maggy]

Hi Morgan,

It probably bugs you so much because you know what your talking about .

I have read many of your posts and you have been through an awful lot.

You would have thought by now that because you are so experienced in dealing with many of your complaints yourself and you dont cry out for help every five minutes, that when you do say there is a problem , you would have thought someone might take you seriously and try and find out.

I hate to say this but i think you have already worked out the reason nobody will do anything it seems your illness scares professionals and it easier for them to ignore you and fob you off than deal with things they are not really sure about, i know i have found this to be the case with myself.

I am so sorry your having to deal with things AGAIN by yourself.

You are very brave and you must continue to believe in yourself.

You do know best and all you can do is continue to express your concerns to people and hope there is someone out there who will be nterested in finding out what the real problem is.

Good luckand dont let them keep putting you down, im sure you wont as you seem a very strong character from what i have read about you in the past.

All the best and hope you feel better soon.

Maggy

[calypso]

I think in the interest of saving money, the doctor tries to rationalize that people like us who get frequent arrythmias are going to have some variation in them (i.e., they may present with different symptoms, may be a little faster at times, etc.). However, I certainly don't think it's right. Of course, there's always the person who gets embarassed by the frequent complaints and then decides to not say something, and that's the one time a symptom could have alerted the doctor to something important and preventable.

I always think it's better to mention the symptoms and ask for whatever test you think you need. If the doc refuses, try another. If that doctor refuses, ask for specific reasoning as to why. Then go to your health insurance if you have to.

On the flip side, I do know that I have had a whole lot of variation in my heart rhythm over the years. I also have had swelling, weight loss and gain, a dry cough, all the symptoms of several neuromuscular diseases, etc., and didn't have any of the actual conditions associated with these symptoms. I was sure I'd be dead by now and am not. However, I had the right tests done to confirm I didn't have those things.

Amy

[morgan617]

Just to clear up any misconceptions some of you may or may not have about me. I call my primary, on average, about once every 4-5 months. I have seen him once in the last 7 months. I have called after hours 4 times in 24 years. I don't call for every new symptom I have.

I saw my cardio twice before he put the pacer in. The initial visit, and the visit to schedule the pacer. I have seen him twice since 9/06. I have called their office 3 times, I rolled over in bed and my pacer moved about 2-3 inches from where it was placed, before the wires had time to implant in the heart muscle. I see him every six months, because I have to. They call me and make the appointment, not the other way around. He is required to check my pacer 4 times a year, two by phone and two in office.

I have been to the ER twice in the last 2-3 years. Each time I have received a conversion disorder diagnosis, which keeps me away. If I go, it's because I am really bad and my DNR forces my family to have to respond, as it is a conditional one. They would be held liable if I died and they did nothing. If I go by ambulance, I am too sick to tell them no.

I do not call uneccessarily, I do not panic over every new thing that happens, or that's about all my life would be about. I do, however, think, if something new is as symptomatic as this is, it is not unreasonable to expect to get it checked out. I am not a doctor hopper. It would be impossible where I live, but besides that, I am just not. I do not like going to new doctors, as most have preconceived notions before they ever see you. (Trust me, I have worked with them and listened to many conversations on this topic)

I have a complex medical history and realize how frustrating I am to all of them, including the ones I've had 20+ years. Of which there are three. I know I don't just have POTS stuff, there are other things in the mix, that just make me appear more crazy. I realize that my PP may be flaring because of a POTS thing or vice versa, or my inner ear is reacting to my "low grade" lupus, or sjogren's.

All this being said, for the money I have put out, and because I am paying for a service, (they are most certainly not doing me any favors), I deserve to be treated like a human being. And it is NOT my job to figure it all out and then go teach them. I am paying the big bucks and they are making the big bucks. Not so much now, because I don't ever, as a rule even make appts anymore. I have had a prn order for labs for 7 months and used it for the first time on Monday, because I happened to be in the vicinity.

All I have been trying to say, is I am a difficult patient only because I am complicated, not because I am a colossal pain in their butts...someone who calls 10 times a week, goes to the ER every other week for the same complaint (I have had this arrythmia at least four times since the initial one, and have not returned to the ER no matter how sick I feel)

My point here is this.....since I do not ever drive these guys crazy, you would think that on the odd time I do call, they would listen. I do not cry wolf, they know that, and so I believe they should pay attention when I say I'm a bit concerned about a new symptom that I am not tolerating at all. I freely admit I have psych problems, depression, ocd, dysthymia, etc. That is not in question. What IS in question, is why when I so seldom bother these guys, they absolutely refuse to listen on the rare occasions I do. By telling me I don't have symptoms, except attention seeking disorders. Because Joe Blow, who's never been sick a day in his life, doesn't feel his occasional pac.

I got a new batch of estrogen and I am beginning to think it's a placebo or a bad batch, because I feel like I have to defend myself here, and that's a pretty rare, if non existant, thing for me. If that's the case, sorry...but I don't call for frequent thumpity thumps. I went 5 months with 7-8 second pauses and dropping on my face before I got aggressive. The broken vertebra was the final straw. Now I am rambling and my dogs are in another room and waaaay too quiet. (one of them was almost choked to death by her collar just before Christmas, maybe I have PTSD, although this particualr rythym started last October) morgan