Totally Confused By My Ep Cardiologist

[Rene S.]

Hi. I was diagnosed with dysautonomia back in Feb. Had symptoms since November. Prior to that I was fine. My b/p was always 90/60, and pulse 60. I always had palps so they put me on the Cardionet event monitor. Well, I had one bout of non sustained ventricular tachycardia (I was sleeping and didn't even feel it!). Since then, my life has been ****. They threw me off antidepressants (I have fibro/cfs) and my HRT. I had an MRI of my heart and it was structurely fine as well as a stress echo. I was started on atenolol (couldn't tolerate it, then Coregard, also couldn't tolerate it, then finally metoprolol, made me depressed and exhausted all were small doses). They seemed to raise my b/p so I was checked for a pheo and it was negative. To make a short story long, I saw another EP and he said that I didn't need the beta blocker, even though at this point my heart was always racing when walking or standing.

Now comes the fun part. Since Nov., my symptoms were getting worse. B/P all over the place from extreme lows to highs. Whenever I stood pulse was over 100.

I've had chest pains, rapid weight loss and shakiness all the time. Prior to the tilt table test my cardio thought it was all anxiety/stress related. I was on klonopin.

I've been to the ER several times with horrid chest pains and they all say non cardiac. I even had a nuclear stress test.

Ok, here's my point sorry - I saw my EP today and he basically dismissed me. I started Paxil 7 days ago, don't feel great on it and he just suggested to go off and go back on the hormones. When I mentioned the fact that he was going to put me on Pindolol (another beta blocker) he said there wasn't a reason.

So, here's my question, it can't be good for our heart to go from over 100 to 80 in a matter of seconds. And my pressure goes up which I don't understand.

Going up and down the steps winds me, like I've run the marathon. I get tired so easily and fatigued and have awful night sweats. Even prior to the dysautonomia presenting itself, the heart tests were normal so he's going by all of these. Basically telling me that everything is in my head.

Grrrr. I know not everyone here is on a beta blocker, but do you get chest pains? And does just simply walking up steps increase your heart rate and leave you short of breath? I'm also nauseated all the time and can only eat small amts.

Sorry I'm just scared and I will probably call the cardio tomorrow and let him get mad at me again but I want to know why I'm tachy.

Can lack of hormones do this? And why all of a sudden does my b/p spike? Thought maybe it had to do with the Paxil but I could be wrong.

Any suggestions would be greatly appreciated. Or explanations!

Thank you all so much!

Ruekat

[Ernie]

Hi,

First of all, in the 8 last years I have realized that when I doctor does not believe you there is no point in trying to convince him. It is better to find one who is open minded.

I also took metropolol for 6 weeks and it made me faint more, depressive and had more BP swings.

I am now on Propranolol with no side effects.

Hormones can surely cause this. All my orthostatic hormones are out of wack when I stand up. I have been tested more than 12 times for my catecholamines and they are sky high.

My BP is all over the place. From 220/170 to 0. This is cause by my hormones and my body not being able to adjust my BP.

When I go upstairs I get chespain, I have to sit, take a break and get really syncopal.

[Csmith3]

I'm not sure I can be much help, but I thought I would say that beta blockers gave me really bad chest pains on exertion, particularly in cold weather. I didn't seem to get any benefits from beta blockers, though I have by no means tried them all, so it was a no brainer to stop taking them. Nothing else has given me such bad chest pains.

Fixing an arrhythmia isn't the same as fixing POTS. I wonder if you need both fixing, and you mention a few other things too. I have both and once I had fixed the arrhythmia I felt much better (and got rid of a lot of the symptoms you mention) and it had a positive effect on POTS, but I still needed to address POTS separately.

In terms of fluctuating BP, I wish I knew as I'm having the same sort of problem and never used to. I agree that hormones seem to add another variable to the equation.

A couple of other observations. Does he think this is in your head or does he just not know what to do? You seem to have tried a lot of medications and come off some pretty serious ones in a relatively short period of time, which is unusual in my experience. Complex health problems take time to properly diagnose and treat and I think it's best to only address one thing at a time so you can assess how much a drug is helping or hindering. It seems to me that someone needs to review the strategy they are taking to solving your health problems - perhaps you could have this conversation with your family doctor or specialist.

[Poohbear]

It's good that your heart is structurally ok. Beta blockers don't work for everyone

What form of dysautonomia were you diagnosed with? Unless your case is viral related it doesn't sound like the typical initial presentation of autonomic dysfunction but you may have multiple things going on.

Have you seen an endocrinologist or a GYN who specializes in hormone issues? They may be helpful in helping you sort some of this out as well.

There are many many reasons why you could be having tachycardia.

You also have to give it time (sometimes a month or more) when you go off a beta blocker or switch---for a period of time you can get a re-bound tachy. issue and it takes your body time to adjust.

The cardiologist may not know what to do--ask him. If he doesn't know what else to try then ask him to refer you to someone that he thinks can help you.

I hope you get some answers soon

[Sophia3]

ok I have heard of really low BP Ernie but ZERO???? Was that a typo? :-) How can both numbers be ZERO?

I thought zero meant you were dead? Even under general anethesia and post op, bp is not that low??? My sister is healthy but had dangerously low following surgeries years ago but never anything over zero..so I am confused by that comment.

anyway, my BP and HR are all over...Standing spikes in BP can be from hyperandrenergic POTS...we often have a baroflex response that can kick up BP...I have caught my bottom number over 100.

THEN I lie down and within two minutes, it drops. Same with HR. There seem to be variables with all of us.

But yes many hormones can confuse ANS stuff and cause their own plethora of symptoms. Its a drag but I hope you get some answers to make you feel better.

Just when we get something figured out, we get new symptoms and do not always know the trigger.

[Ernie]

Hi Sophia,

When I did my first TTT at NIH, Dr Goldstein said that my BP was zero, that I had no blood pressure. It lasted for a few seconds and my heart was still beating. Then they put me down and my BP spiked. I don't remember how much time it took to get back to some normal but I felt like ****.

[morgan617]

Hormones can mess with everything. If they took you off it, did they ever put you back on an hrt? I have been on estradiol for years, and feel absolutely awful when it's stopped for any reason.

I'm hyperadrenergic too, really high BP's, although over the last couple of years my BP has dumped to really low measurements, but they can be all over the place, and my pulse can go from 140 or so to 25 in just a few beats. I didn't tolerate that at all and now have a pacer. I kind of feel like maybe I'm developing a vagotonia type thing, but who knows.

Betas are a crap shoot, the only one I tolerate, and believe me I've tried them all, is atenolol. If I don't take it my pulse is always above 100 but will drop to 25. if I do take it, it helps control the fast rate, but makes the slow rate worse. So, I had to get the pacer to take the med. Our bodies are just whacked. I should say here that I had my heart ablated in 2003 and my primary feels that it damaged my sinus node causing the rhythm problems I have now.

If you did well on the hrt and had no problems, I'd suggest you call the doctor that prescribes them and tell him you need to restart them.

I have a fair amount of vtach and I don't always feel it and my ep is a dunderhead too. He said we could address it when it became "lethal" I swear to God, he said that. The only reason he sees me now is because he put the pacer in and HAS to see me. He says I certainly have autonomic problems, but he doesn't "do autonomic." I am on a sabbatical from doctors at present, and haven't seen one in about 6 months. It's not for everyone, but it feels great to me, I think they stress me out more than any of my illnesses.

I hope you can get back on track soon and being back on hormones helps with things. Good luck sweetie..morgan

[Rene S.]

Thank you all so much. This is so frustrating. Today I was supposed to be my first day off of Paxil and I'm already having withdrawal effects and I was only on it for 7 day at 5mg. The dr. says it's impossible. I called my gyno and she said I can start up with my vivelle dot. I'll shoot for Friday.

I don't understand why my pressure was so high yesterday and low this morning. Grrr. Now it's probably high again.

And I too get the chest pains going up the steps. I feel 90, not 49.

Yes, the times I have attemped various beta blockers have left me even more weakened. I'm so frustrated. I 'm tired of drs.

I live in Bucks County, PA. (outside of Phila). Does anyone know of a good dr. who deals with dysautonomia? I do believe it's POTS but was never given a name.

I just want to live again. I'm tired of shaking and feeling as if a load of laundry is a big accomplishment.

Thanks for all of your imput and suggestions.

Ruekat

[jump]

Ruekat,

Sorry you're having such a hard time!!!

I'm not currently on a BB and I consistently have tachycardias when I stand (110-140, usually, up from 65 sitting), and I have HORRIBLE chest pain. So intense that sometimes I have trouble focusing on conversations, etc. I also get really winded when I climb stairs, and my BP shoots all over the place all day long, from too low to too high. And I had an echo and an EKG and a 24-hour test, all that said my heart was structurally sound.

My doctor has reassured me that, since my heart is structurally ok and since my heart rate and bp get a rest when I sit down or sleep, that I don't have to worry about damage. She told me that the BB is really only about controlling my symptoms so I FEEL better; the BB does not actually make me better or resolve the original problem. For this reason, whether I take them or not is my choice, and there's no reason to take them unless they make me feel better.

In my case, I do feel a lot better on BBs, and I'm going to start taking one again in a few weeks. But if they don't make you feel better, then you should probably pursue a different avenue of treatment. In terms of chest pain, etc, it IS possible to have intense pain and be perfectly ok (as in my case), but you do want to feel confident that your doctor has completely checked you out before you accept that everything really is ok.

[pat57]

Ruecat,

we are neighbors, I'm in Bucks Co. I have an EP but can't recommend him. I have seen 4 EPs in my last 4 appts. because they all leave the practice. Cardio consultants of Philadelphia. They have one EP.

Also I have had 0/0 bp readings during a TTT. I believe mine was too low for the machines to read I don't think it was asystole - like Ernie.

[EarthMother]

Sorry you are having such a rough go Rou.

In brief, some folks don't do well on drugs like Paxil or Beta blockers ... after good hearted attempts, my Doctors now agree. And in my case I DID have some horrendous withdrawal effects from benzos after only a couple months.

My cardiologist who affirms I have POTS also feels given my history that the beta blockers would only make things worse. And yes, he doesn't seem concerned that my heart rate goes up drastically when I stand. But I don't think its because he is putting me off, I think he genuinely believes that the beta blockers wouldn't be the answer I am looking for. And when I've used them before years ago, they didn't help the weakness or fatigue or nausea etc.

For me, I do eat very small meals every 3 hours or so. Its much easier for my body to handle this than a full on meal in one sitting. Oh and for the record a load of laundry IS a big accomplishment for me! It wasn't always that way ... and I trust things will settle down again some day ... but for now, this is just the way it is.

[Rene S.]

Hi Pat,

Sorry I didn't get back to you sooner. I've actually seen two EPs. Both barely have the time for me and quite frankly, I think they are sick of me. I guess if they can't fix it, they don't deal with it. I was using the Group out of Abington Hospital (there must be about 15) and saw the EP. The other guy is in Jenkintown with PA Heart and Vascular. He's the one that dismissed me.

Are there other type of drs we go to? This is all so confusing. And during my tilt table test at The Braemer Heart Institute at Einstein my b/p went to 40! You kind of wonder if that can trigger a major flare up and that same week is when I had my nuclear stress test. After not being able to walk that much to suddenly be running on the treadmill really took a toll on me!

I wish everyone well and if anyone else in the area knows of someone, please pass their good info along!

Many thanks!

Rene (ruekat)

[Rene S.]

Sorry you are having such a rough go Rou.

In brief, some folks don't do well on drugs like Paxil or Beta blockers ... after good hearted attempts, my Doctors now agree. And in my case I DID have some horrendous withdrawal effects from benzos after only a couple months.

My cardiologist who affirms I have POTS also feels given my history that the beta blockers would only make things worse. And yes, he doesn't seem concerned that my heart rate goes up drastically when I stand. But I don't think its because he is putting me off, I think he genuinely believes that the beta blockers wouldn't be the answer I am looking for. And when I've used them before years ago, they didn't help the weakness or fatigue or nausea etc.

For me, I do eat very small meals every 3 hours or so. Its much easier for my body to handle this than a full on meal in one sitting. Oh and for the record a load of laundry IS a big accomplishment for me! It wasn't always that way ... and I trust things will settle down again some day ... but for now, this is just the way it is.

Hi EarthMother<

Sorry I didn't respond to your posting before. You seem to know so much and I so little. I'm so sensitive to meds. Seems like ever since I was diagnosed with the fibro/cfs almost 9 years ago but even more so with the dysautonomia. I feel like a failure. I had horrid anxiety that seems to always be with me. Exhaustion beyond belief, and when I do force myself to drive, I can feel my heart beating so fast that I fear it will burst. I have been on bbs in the past and they never agreed with me. And I'm trying to get off of the Paxil even though it's only been 12 days my dr said I have to wean (from 5mg to 2.5 because my system is so sensitive). I don't understand why my b/p goes high when I'm faced with something as simple as driving and then it can be normal when I know that I'm "stuck" in the house. I do see a therapist but we've yet to hit on this point. She had me get an anxiety/phobia workbook but I wonder if this is all part of the illness. I would hop in the car at a moments notice even when I only had the fibro/cfs. Now I fear everything. I don't know which type of dr. to turn to. When my pressure is high, I fear that I'm doing my body damage but if I sit quietly, it goes to relatively normal.

There must be an answer somewhere.

Please your expertise is much needed.

Thank you so much.

Ruekat (Rene)