A Little Freaked-skipped Beats, Slow Hr

[mkoven]

So all day long I've been feeling short of breath, head pressure, chest funniness,and on the brink of fainting whenever I sit or stand still. Out of curiosity, I checked my pulse, and there were long pauses between beats, and then it would go back to upper 60s, and I'd get a panicky rush, it would go up to 70s, but then super slow, skipped beats, into 40s. Adrenaline surge, and then back to 70s. REwind, repeat. In fact, I can't guarantee , but it seems that maybe my faint feelings coincide with these drops in hr. I do have my period and I feel much worse if I stop moving, pee, have a cramp etc. Is this typical ncs/pots? Is this something else? I have an appointment with my pcp on Monday, and would prefer to avoid the er, but I'm a little freaked by the slowing hr and faintness. Plus, the weather is awful--super slick roads and freezing rains. I guess I could confirm that this all improves when I'm reclined. Does this sound like a hormonally triggered ncs flare??? I've had cardiac workups before that were unremarkable.

[Mrs. Burschman]

I honestly have no idea. But if you're really worried, you should probably get yourself into the ER. Better safe than sorry!

Amy

[mkoven]

Well I do feel better reclined than sitting up or standing-- I guess that calms me down that it's probably just ncs, worse with my period. I feel like I have adrenaline surging through me now , and bp 115/76, hr 62 when reclined. Pretty unremarkable-- except that a heart rate of 62 seems low for someone as freaked out as I was feeling. I need to pee every fifteen minutes and I'm freezing, though the thermostat says 74. I'm worn out but still wound up. If I can skip the er tonight, that would be really nice. I just got a little flipped feeling like the faintness and slowing hr. But if it's positional, that supports pots/ncs, right? i'd love to calm down, feel safe, fall asleep, and have tomorrow be a new, more normal-feeling day.

[morgan617]

Not sure the ER would be helpful, but it might help with your anxiety about what's going on, better to find out it's something"benign" than to lie there worrying about whether it is.

Anytime you have something new that's making you feel this cruddy, it's usually best to get it checked out...good luck sweetie...morgan

[mallen1]

mkoven,

How are you feeling now? Any different? FWIW, I too show dropped beats during a stress test. What's unusual and what struck me in your post is that for me, they correlated with my palpitations, i.e. I was feeling each dropped beat. Neither the techs nor my cardiologist had seen that before, but hey, this is Central New York.

At baseline, I experience somewhat the opposite of what's plaguing you. I have Inappropriate Sinus Tach for which I'm on Toprol XL, a beta-blocker. The above testing was precipitated by a resting pulse of 157 in the ER and me thinking that I was going to die. I didn't want to die. Not there at least.

Should your physician set you up for any cardiac testing, it would be interesting for both of us to know if you "feel" your dropped beats.

Most important, I hope that you feel better. I can sincerely empathize with that rollercoaster feeling. Hang in - my thoughts are with you.

Take Care,

-Mark

[mkoven]

Thanks, you guys for your support. I made it through the night. There was definitely a positional piece to this, because I was much better lying down. I poked around a little bit and read that with ncs, the drop in bp can also trigger or co-occur with a slowed heart rate. (I usually get the fast hr, but not yesterday. ) throughout the day yesterday, I had these odd sensations of chest pangs/faintness/greyout. It was just weird to notice, as I was taking my pulse, that these co-occurred with long pauses between beats. But these seemed to really only happen when upright. But it was creepy to feel my heart NOT beat and feel the symptoms happen at the same time.

I'm sure you all appreciate my wish to avoid the er. It's stressful going there. I rarely get answers. I feel like a frequent flier. I feel like an idiot. And they don't know that much--the last time I was there for similar symptoms, my shortness of breath had them worried it was angina. And so I was kept over night. they said ncs never has shortness of breath. Though it seems like folks here do get that.

I do see my pcp tomorrow, whom I like fine, though I think I'm wearing him out, and he may not be able to look at me with "fresh eyes." In the past eighteen months I've had: standard ekgs, stress echocardiogram with dobutamine, event recorder, chest ct. The only thing that ever showed was tachycardia, with a normal rhythm. I didn't have a tilt table test, because my eds joints can't tolerate static standing for more than five minutes. (though I can walk for almost 30--when I move my muscles can hold me together. when I'm still, my ligaments scream, and my joints sublux.) What other tests could I ask for? Or should I ask for repeats?

[morgan617]

I had a lot of event monitors and was in an ER when they saw what I told them. I could feel the dropped beats. Sure enough, I was dropping from 140 to 30. I was falling on my face all the time and told my doctor I was sure it was my heart, because I could FEEL it. I finally ended up in an ER and still got sent home and had to make an appt to get it checked out.

He blamed it on beta blockers, which I wasn't taking. I wasn't taking anything at the time. I finally got a pace maker, but to this day he says it was a beta blocker I wasn't on. I am on it now, but my rate won't go below 60. So, I feel all my irregular beats, although they never believe me. The atenolol is for my IST and BP and I know it exacerbates the tachy-brady, but if I wasn't on it, it couldn't cause it. You just keep insisting on those event monitors until they catch it.

(the ER did try to get me admitted when they saw the 7 second pauses, but the cardio refused) mine wasn't positional as I remember, but it doesn't matter, if you can't stand up! morgan

[mkoven]

I still feel pretty bad if I don't keep moving. Faint, short of breath, chest pressure. Just took my bp-- 84/46, hr 64. Position does make a huge difference in how cruddy I feel. I'm doing all the conservative stuff- stockings, salt, fluids. Just trying to hold off till my appointment tomorrow.

[Maxine]

I've been following yout post Mkoven, and wanted to let you know I'm thinking about you.

I hope things come out well for you at your appointment, and your Doc can get down to the bottom of it.

Keep hanging on, even if you have to stay flat most of the time. Otherwise, it sounds like your doing whatever you can to keep yourself stable.

Wishing you the best.

BIG HUG

Maxine :0)

[mkoven]

So I guess the doc appointment went okay. He took me seriously.

In terms of the ncs/faintness/slowed hr:

1. I'll get a 60 day event recorder next week.

2. a return appointment with electrophysiologist

3. I am to go to the er if I actually faint, or if my systolic bp drops below 80.

If my heart rate is shown to be consistently getting too low, he thought the electrophysiologist would recommend a pacemaker. but he did say that hr can drop with bp with ncs. it's just not good for hr to get too slow. He thought that indeed my shortness of breath is from ncs-- if I'm just not getting enough bp to get oxygen.

4. I might try midodrine, a drug that raises bp, but he asked me to post to dinet to see if it gets used intermittently. We were both wondering if I could just take it for a week or so a month, when I am premenstrual/menstrual, and really symptomatic. Any opinions/experience with intermittent use midodrine?

So I guess it was a good appointment. I felt listened to. There is a semi-plan.

Thanks, you guys!

[Tessa]

Glad to hear that you finally got to someone who really cared and wanted to help and that you have a start to check what?s going on.

I hope they can get to it for you to feel better as soon as possible.

Take care,

Love,

Tessa

[Sunfish]

glad to hear that your appointment went pretty well. a receptive doc is truly invaluable in any situation large or small.

midodrine can be & is certainly used intermittently. it's one of the advantages of it being a short acting med. i know i've written about it before but have no recollection of what context so would have no clue how to find or direct you to my ramblinngs!!

i take midodrine 3-4 times daily now, every day (at a dose that's actually above the standard recommended/ approved amount) but have taken it at varying doses & in different ways for over ten years now, including intermittently and with varying dosages at different times/ days. my dosing has always been per dr. grubb so while it's obviously tailored for me, i know of at least several others on the forum who use/ have used midodrine intermittently as well.

i have more to write but i have to get off for the moment and my computer is being moody (not letting me save what i've written thus far for later) so i'm posting this & will return later with more details.....

melissa

[mkoven]

Thanks, Melissa! I'm eager to hear your followup!! I guess my doc hadn't heard of its being used intermittently and thought it might make matters worse. But I have times when I'm really not so symptomatic. I really prefer the idea of something that's not a commitment.

I'm wondering if you have a link to a site that describes intermittent use...

As with everything, I'd want to start on a teeny dose to see how I react...

Another question I had was whether midodrine would affect migraines????

Thanks!!!