Did Anyone Ever Wear A 24 Or 48-hour Or 30 Day Monitor To Help Diagnos Pots?

[iheartcats]

I was finally diagnosed in January 2008 with POTS, but recently ordered my 24-hour heart monitor results from 2005. I need to take this to my PCP and see if it's abnormal...but it says my heart rate was more than 100 for 20% of the day. I know I wasn't exercising with it on, and that seems 'high' so I wonder if I've had symptoms way before diagnosis. I really didn't start to feel 'bad' until Spring of 2007.

Anyway - is it reasonable to ask to wear a 24-hour one now to compare? I feel this would give me more insight (and my PCP/EP, too)...I guess I can push for this. I'd like to know.

[Ernie]

Hi,

I had one a year or two prior to my diagnosis. My HR went up to 180 during the day and the doctor said it was normal. Looking back now I know it was abnormal because during the high HR I was sitting in class. So I don't think it is a good diagnostic tool for POTS unless you write down your position, time of day and activities.

[mkoven]

Maybe something longer like a 30 day event monitor might be more useful. I think it'sr eally for diagnosing dangerous arrhythmias, but it either self-triggers or you push a button whenever you feel something. I've had 2 done, a year apart. I get more weird beats around my period, but nothing anyone is too worried about--pacs, pvcs, in addition to a fair amount of sinus tachy and sinus brady.

the only annoying thing with the monitor is that I felt like I was on the phone on hold calling in my recordings all the time. My monitor could only hold 3 events, and I was pushing the button at least 12 times a day. (The jingle they play on hold started really grating on me!!!) and I am somewhat allergic to the adhesive from the electrodes.

[EarthMother]

I've had a few 24 hour holters over the years ... and depending on who is analyzing them you can get different opinions.

My cardiologist who diagnosed POTS some 5 years ago recently decided to do one (probably to reassure ME since I was having more "skipper beats" as he called them.)

I decided to keep COPIOUS NOTES. Not that short journal form they give you. I wrote down EVERY TIME I stood up, went to the bathroom, walked up the stairs, ate food, layed down to rest, even when I had sex (ok sorry too much information, but I REALLY want to know).

The results were more helpful in my opinion because we had so much corelative data to cross reference. In my case it wasn't ever a question of POTS ... but boy it was clear to see it charted out.

And it was also reassuring that the few Atrial Runs where brief and my sinus node looked to kick in soon.

If you decide to do another one, I recommend taking a lot of detailed and specific notes. And if your Doctor approves push yourself a bit to see how you do under various circumstances.

~EM

[mkoven]

Earth Mother, Can you tell me what an atrial run is? I had one and didn't understand what it was.

[firewatcher]

My Holter monitor actually DID help. It was a 24 hour thing and I too am allergic to the tape with which they attached the electrodes, that was the worst part! I itched/hived for almost a week after they took that thing off, and practically scrubbed my skin off to get the adhesive off.

OK, how it helped: my cardiologist said it was "normal," but very few doctors know anything about POTS. The average HR log in the report showed a min/max HR for each hour, mine were always around 100+ when I was upright/awake, but as soon as I lay down my HR immediately dropped. I had bradycardia for most of the night. If you look at the 24-hour graph there were two almost straight lines up and down: when I went to bed and when I got up. If you looked at the min/max for the hour I got up it went from 54bpm to 128bpm (and stayed around that for 4 hours!) Sounds like POTS to me, and to the doctor at Vanderbilt.

The holter monitor is also useful in showing possible sleep apnea. If there is bradycardia and a sudden short spike of tachycardia then it suggests apnea. Only a sleep study will confirm it though.

I could also tell from the monitor results what eating and medication did to my HR: meals=tachycardia and an almost immediate drop to 80+bpm and melatonin caused a gradual drop to 80bpm.

I'd get one just as a baseline and for the information it provides.

[janiedelite]

After my first ER trip for heartrate over 160, I was put on a 24 hr monitor, and then a 30 day monitor because I would still be tachy in the dr's office. All the cardiologist said was rates went from 40's to 140's with PVC's. He noted nothing unusual. 2 years later, I was diagnosed with POTS by an EP cardiologist who did a "poor man's" tilt table test in his office (lay down, sit, then stand with BP's pulses). Janie

[EarthMother]

Earth Mother, Can you tell me what an atrial run is? I had one and didn't understand what it was.

I am awful when it comes to "guess that acronym" but best I can remember an atrial run is the same as Paroxysmal Supraventricular Tachycardia or (PSVT) PSVT can also be called paroxysmal atrial tachycardia (PAT). Its not an uncommon arhythmia. Atrial runs are defined as being very fast (150-250 bpm) and are triggered by a premature atrial beat. Most of the time they stop on their own. If I recall I had a few during the day I was tested, but none over 7 beats.

As I said, this stuff confuses the heck out of me. So it's very well I got this mixed up with one of the other "rare runs" that the Doctor noted on my chart.

~EM

[iheartcats]

I'm seeing I had a lot of similar as you guys - 120s standing (up to 160-something as a high) and lows in the 70/80s down to around 58 while sleeping.

Makes me wonder because I hadn't been diagnosed with POTS (or having any really noticeable symptoms). Kinda sad I went around for a couple years with high standing HR and never noticed!

My doctor and I wanted to try a 30-day, but insurance was being a pain about it. So maybe we can try again. I'd still like at least a 24 to compare it to the 2005 results.

Geez. You'd think if I started to have symptoms four years ago I'd be doing better (from what you hear) but maybe not because isn't the 3-5 year recovery AFTER diagnosis? If I was feeling overall ok in 2005 (just starting symptoms/tachy), well...who knows. Maybe I just don't remember what it feels like to feel WELL.

[juliegee]

Hi Cat Lady,

I wore something similiar called an event monitor back when I was having awful tachy. I had it for a few days and pushed a button whenever I felt symptoms coming on. I caught several runs in the 160's, but they were "normal" sinus rhythms so my PCP wasn't concerned. In retrospect, I suspect I was having episodes of anaphylaxis. During one uncontrollable episode of tachy, I used my epi-pen for the first time. My HR was going faster and faster AND I felt like I was going to die. An epi-pen is the WRONG thing to do for tachy as epinepherine can worsen tachy, BUT (luckily for me) it's the right thing to do for anaphylaxis. Within seconds of stabbing my thigh, my symptoms totally stopped.

Separating autonomic abnormalities from anaphylaxis is difficult. The one thing the holter helped with is providing more concrete proof to my docs that something was going wrong.

Julie

[delphicdragon]

Had a 24 hour Holter when a "very dumb" cardiologist thought that I had Innapropriate Sinus Tachycardia (for all I know, I do).

The highest my heart rate got was 140 during the test. I mentioned to him that the day I was tested, I woke up with a horrible cold and laid in bed the entire day, and he said that the 140 was "normal." C'est la vie.

Granted this is the same cardio who did a stress test on me, which I failed , according to him, and then who told me that I needed to exercise more so that my heart rate wouldn't hit 200 within the first 2 mins of the test and so I wouldn't get chest pain. My BP was not checked during the entirety of the test even when I complained of severe chest pain. Fun times!

I should probably get another one done now just to see what's going on.

I think it has to do with who you get to read the results of the test

Sara

[mkoven]

That's terrible, Sara. I hope you currently have a good doc.

[firewatcher]

Had a 24 hour Holter when a "very dumb" cardiologist thought that I had Innapropriate Sinus Tachycardia (for all I know, I do).

The highest my heart rate got was 140 during the test. I mentioned to him that the day I was tested, I woke up with a horrible cold and laid in bed the entire day, and he said that the 140 was "normal." C'est la vie.

Granted this is the same cardio who did a stress test on me, which I failed , according to him, and then who told me that I needed to exercise more so that my heart rate wouldn't hit 200 within the first 2 mins of the test and so I wouldn't get chest pain. My BP was not checked during the entirety of the test even when I complained of severe chest pain. Fun times!

I should probably get another one done now just to see what's going on.

I think it has to do with who you get to read the results of the test

Sara

No kidding! My cardiologist said that a 52bpm increase in HR was just a "zero to 60 response" to starting my day (and the next four hours after!) He also said that a HR of 42bpm was "perfectly normal" at night. He told me that I couldn't possibly have POTS since my HR didn't get that high.

[iheartcats]

Yeesh. I can see why POTS and similar conditions go undetected for so long.

Mine seems a bit off (why would I have a 100+ BPM for 20% of the day, while not exercising, and in my 20s)? That's doesn't seem 'normal.' Wish I would've asked for a copy of this in 2005, but back then I just took what the doctors had to say as fact. Now I've learned.

[jump]

I had a similar experience.

I had a 24-hour holt monitor test, and at first my cardiologist said it was "normal." But what he really meant by that was that it didn't show anything out of sinus rhythm for a significant amount of time -- which is very good and very reassuring, but not the end-all be-all of "normal."

When I pointed out that my hr went up to 140 while I was brushing my teeth (standing), going up a half-flight of stairs, waiting in line, etc, and that my sitting hr was 50 and my sleeping hr was 40, he diagnosed me with POTS.

I think sometimes cardios are so busy, they just check and make sure you're not about to die and they don't look at the details. At least that's the only explanation I can come up with.

Incidentally, I think having a sleeping hr in the 40's is not considered bradycardic (at least from what I've been told). Sleeping heart rates are often very low even in perfectly healthy people. In my case, it was only of note because it demonstrated the drastic difference between my body at rest and my body standing; if I had had an elevated hr while sleeping and sitting, my cardio wouldn't have diagnosed me with POTS. I've been told a normal sleeping hr is 40-68, and that only when it gets below 40 is it of concern. Obviously waking hr is different.

[pat57]

I was seeing a neurologist because I had seizures. I first had a 3 day EEG then a 3 day event monitor, after which he said I should see an EP for Neurocardiogenic syncope. I never asked what was seen.

[firewatcher]

I had a similar experience.

I had a 24-hour holt monitor test, and at first my cardiologist said it was "normal." But what he really meant by that was that it didn't show anything out of sinus rhythm for a significant amount of time -- which is very good and very reassuring, but not the end-all be-all of "normal."

When I pointed out that my hr went up to 140 while I was brushing my teeth (standing), going up a half-flight of stairs, waiting in line, etc, and that my sitting hr was 50 and my sleeping hr was 40, he diagnosed me with POTS.

I think sometimes cardios are so busy, they just check and make sure you're not about to die and they don't look at the details. At least that's the only explanation I can come up with.

Incidentally, I think having a sleeping hr in the 40's is not considered bradycardic (at least from what I've been told). Sleeping heart rates are often very low even in perfectly healthy people. In my case, it was only of note because it demonstrated the drastic difference between my body at rest and my body standing; if I had had an elevated hr while sleeping and sitting, my cardio wouldn't have diagnosed me with POTS. I've been told a normal sleeping hr is 40-68, and that only when it gets below 40 is it of concern. Obviously waking hr is different.

A sleeping HR in the 40's is "normal," but still considered bradycardic. It made them stop my evening dose of beta-blockers, since it was already in the low 40's during sleep (unmedicated,) the docs did not want it to go lower.

[jjpots]

I've had the 24 hr holter and the event monitor in the past but that was after I was already diagnosed.

JJH

[yogini]

jjh, you are so right. I know someone who is a cardiologist, who told me they are constantly dealing with life and death matters, so anything that isn't life threatening does not seem so important. I think that the holter monitor test is for arrythmias, so any regular sinus heartbeat, regardless of how fast or slow it is, may still be considered normal. I think these drs brush us off, forgetting that it may be painful to function if the HR is so high or low, or that we might benefit from investigation or treatment.

[jjpots]

A question me and my husband keep wondering is what are the long term effects of a heart that is tachy much of the time? They say pots isn't life threatening and yet cardiomyopathies can be caused by prolonged tachycardia. Makes me wonder if mine was caused by that or by my pregnancies.

Je

[ana_22]

my first cardiologist that ordered the 24 holter said it was normal....except my hr didnt go down while i slept.

the holter was done while i was feeling my absolute worst (well almost my worst)

since seeing him i have changed cardios to one who specialises in pots and i had to get all my results from the previous cardio.

now i dont have them with me as ive given them to my current cardio (should have made a copy)

BUT i glanced over the results and saw that for the nighttime hours my HR was from 70-138 t night!!!!!! i have to admit i probably got up 2 or 3 times to go to the toilet and at the time i was suffering from terrible broken sleep.....but still how could this be normal!!! he even went on to say my holter was not indicative of someone with POTS. even if it didnt indicate pots im sure it would indicate for further investigation

anyway i havent asked my current cardio about it yet. shes soooo much nicer. she even kinda did a little laugh when she found out who my previous cardio was saying she has a few patients that have seen him prior. Was going to tell her my experience with him but i think she knew!

[Shimoda]

I wore one for a week - every day after school. That was a while ago though...and was a COMPLETE waste of my precious time.

[Darlene]

I wore the 30 day event recorder and the 24 hr holter monitor prior to diagnoses. The 30 day event recorder showed tachycardia, and the holter monitor came back abnormal. I was sent to a cardiologist, and he diagnosed me with POTS. I haven't wore an event recorder or holter monitor since.