Well, shoot. I just got a call from my internist that my potassium was fine.

My neurologist said that sometimes MS can cause cardiac problems but that it's rare (I also have MS). Well, since I'm a PKD genetic mutant, maybe my body just likes to do rare!

Librarylil,
Sorry to hear you went through such a frightening experience! That 911 call was the right thing to do. And nitro will get everthing moving fast!

For some of us, our pulse just drops at times, for no reason at all. Or we have naturally low heart rates (my resting heart rate is in the 50s despite my serious lack of exercise) and when I'm in the hospital alarms are constantly sounding because it will constantly go below 40 (alarm rate for the ICU). No one knows why, it just does. It could be a medication, situational, heat, cold, fright...and number of things, even positional or lack of food or water.

I hope you have a followup with a cardiologist just to confirm there's nothing wrong with your heart (EKG, echocardiogram, cardiac associated blood work (PT/INR, etc.). And a consult with your neph to check all those electrolytes and your CMP and CBC again (ones done while you're in distress aren't always the most accurate to determine what's normal for you).

Can't speak for the MS. You're one of a kind there! But perhaps you're rhematologist can give you some ideas. You definitely need a team approach!

I'm just glad you're back to normal! Just keep smelling salts nearby and next time (which hopefully there will never), don't even think about driving yourself! The IV might hurt, but it sure beats the alternative of passing out behind the wheel!

Best wishes,
Ruth

hi my favorite librarian. I had a similar episode while on dialysis, not during treatment but early in a.m., a dizzy spell and quick blackout in kitchen that caused me to grab counters on each side followed by rapid heartbeat.
I took bp and it was high, my pulse rate was around 180.
I called 911 and they sent an FDNY ambulance with four (count them, 4) big strapping hunks. how is THAT supposed to slow down my heartbeat?
they injected something that felt like a punch in the chest, I gasped and my heartbeat went back to normal. they took me to the ER where I was seen by my neprologist and my cardiologist (both strapping hunks too), given EKG and probably a chest Xray before being sent home hours later with no explanation,
it never happened again and I just wonder if failing kidney function can sometimes affect the heart.
anyway, welcome to a great support group. hope we hear from you a lot.

My cardiac problem was while i was getting my liver cyst drained and all the alarms in theatre started going off scary ha. But they gave me attropine which ive spelt wrong im sure, i felt fine 10 mins later and left the hosp that day but returned 3 days later fluid on my lungs. Have you had a heart scan, and i hope you feel better soon.

Thank you so much for all of your replies. So, maybe this is just another one of those quirky things that goes along with PKD? Do you think that if it happens again, it will just pass? Or does the heart have to have the nitroglycerine to get it going again?

Spiderwoman, I know what you mean about the paramedics! Why do they all have to be so darned good-looking and young?!? Especially when they're tearing your clothes off???

One good thing is that I think my workplace (a school) will pay for the ambulance.

Thanks again for your support!

I got the paramedics report back and when they got to my work and took my BP, it was 60/0, with a weak pulse, cold and pale skin. I'm wondering if I hadn't gotten the nitroglycerin, would I have just died, or would the heart have come back on its own?

I know PKD can cause heart problems, but I thought it caused increased BP, not decreased BP?

so glad you got the nitro, I don't know how low bp can go but yours sounds pretty close. everyone let's celebrate still having our favorite librarian (really smart one too with loads of information when she is feeling up to it, hope that's soon).

It most likely had nothing to do with pkd... They will consider your labs, what medications you might be on, any health issues in particular any problems with the heart. Bradycardia often doesn't even happen in isolation; some cardiac tests will show if there is a problem with the heart. Bradycardia is when one's heart is beating too slowly for whatever reason. It can be a physical problem or even an electrical one. Did they do other tests in the hospital and if so do you know what those tests showed if anything?
Last year I went to the ER because I was not feeling well and thought that my heart was skipping more beats than usuall. I was there for hrs., when they decided to discharge me because they couldn't find anything; at that point I went into brief v-tac (ventricular tachycardia). They then decided it was impertaive they admit me. Days later they decided to cischarge me because they could not find a cause. They did an echo and sent me home. Later that night they called to say there was a serious problem. I had a "bad" aortic valve for years and it had gotten suddenly worse. I needed surgery. My point is that often it takes awhile to find a cause for such problems as erratic heart beats. Sometimes they don't even find a cause but intervene with something like meds. or even a pacemaker if things are serious enough to warrant that. I hope you soon find out what the problem is and too hope that you let us all know how things are going. I know how frustrating these things get so know that I'll be thinking about you. Lin.

Wow, that is very similar to when I passed out at school. Except they said my BP was very high. They never really gave me an explanation except possible anxiety.

yup, heart racing, nausea, breathlessness, dizziness. I have always had heart palpitations. The first one I remember was in 1st grade. But it was mild. I used to passout a lot when I was little too. Something slight like an elevator or running around too much would make my BP drop way too low and I'd pass out. Never knew why.

I noticed now that it has gotten to where if I run around a lot (not really a lot for my age, but to me personally) I get the same feelings and my limbs go numb.

I still think I passed out because of the prednisone (known to cause problems in my family). So no more steroids for me.

I wonder how often they send people homw with no answers then.

Either way, I'm glad you're okay now and hopefully it doesn't happen again to any of us.

I would request a referral to a cardiologist as others suggested. Bradycardia in the general population is usually limited to people who are very athletic, at least that's what the doctors and literature says. As a person who has had bradycardia for 12-13 years, I can tell you that I am not the slightest bit athletic or in shape! Like Ruth, I send the nurses running everytime I'm in the hospital. My heartrate drops to the 40's in my sleep and is usually in the 50's when I'm just sitting around at home. I've had EKG's out the wazoo along with Echo's, 24 hour Halter and tredmill Stress test. Everything has come back normal, I just have a low heart rate.
Now I am of the mind that for some people with a physiological low heart rate their could be an underlying conduction problem that makes the heart go too slow. Too slow means a pulse of 30 or less. That is not sustainable with life and therefore major symtpoms appear. The good news is that often these conduction issues can be resolved as an outpatient with a little jolt of electriciy via a catheter to the affected area. Worst case scenario is a pacemaker.
The only way to know for sure is to see a cardiologist for a complete work up.
Take care and good luck.
Tami

I would like to add that there are meds. in particular bp meds that can slow the heart rrate so be sure to ask doctor or pharmasist and check with the listed side effects for all your meds... I'm on Metoprolol (Toprol) for bp and that slows the heartrate. Lin.

re what Lin said, when I had my episode of speedy heart rate I was told to stop taking one of my bp meds because it speeded up my heart rate. so I suppose a med can do the opposite.
this PKD thing is like walking on a tightrope, trying to keep everything in balance when the kidneys won't do it anymore. even after transplant it is somewhat of a balancing act between immunosuppressants and other meds.
it ain't easy but that's why we are so tough!