Advice On Preparing For A 24 Hr Ecg/holter Monitor

[Batik]

My GP, who is still looking into referring me to a POTS specialist, wants me to do a 24 hour ECG/Holter monitor in the meantime. She's probably made the referral for the latter by now, and said it's relatively quick, which probably means weeks, perhaps a month or two. With that sort of timescale, it also probably means that I may not get more than a week or so's notice, though I'll need at least a week in order to book someone to go with me.

I assume that I should be off any meds which might interfere with the results. Here's what I am currently on:

Daily

Adcal D3 - calcium and Vitamin D supplement. I doubt it will make much difference if I go off that.

Alverine citrate - for IBS. No idea if that interferes or not. My intestines are relatively well-behaved these days, I'm not too worried about going off that either.

Vitamin B complex - not prescribed, and not a problem to come off. I'm not sure that it does anything for me anyway.

Cetirizine 10mg and alimemazine 10mg - these are the main ones. I'm theoretically on antihistamines for dermographism, not that they make a blind bit of difference to it, but I strongly suspect a mast cell disorder. The most notable effects are that I sleep better on them, and that my pelvic pain (which is mostly just around my period anyway) pretty much vanishes. I think they may be helping my ANS too, though it's hard to tell.

Occasional use

2mg diazepam - for anxiety or muscle pain

30/500 co-codamol - for pain

20mg temazepam - for the odd really bad sleepless night

various things for nausea or IBS as needed

Obviously I will ask my GP about this, but I anticipate a very vague answer. Does anyone have any idea which ones I should go off, and how far in advance to do so?

[futurehope]

I am not a doctor and cannot tell you what your doctor wants, but I do not recall getting off of anything for my Holter monitor.....but, then again, maybe I am forgetting.

[ddschool]

I have had to wear one for 24 hrs & for a month. Your doctor will probably want you to do your activities & meds as usual, & keep a log (they always forget to tell patients this). The log is to go along w/ anytime you push the button if you have a symptom or feel funny. If you are allergic to tape, ask for hypoallergenic electrode pads &/or skin prep wipes-this will help w/ skin irritation.

If I can help anymore, let me know.

[flyingsquirrel]

There are many different protocols for Holter testing and it completley depends on what they are looking for whether you need to go off any of your meds or not. You should definitely ask your GP (who ordered the test), but if they are looking for what your heart is doing over any given 24 hours, generally patients are advised to take the medications they would normally take in those 24 hours in addition to continuing their normal activities.

The MOST IMPORTANT thing to do in preparation for Holter testing is TAKE A SHOWER before going to get the monitor put on. You will not be able to shower/bathe/swim until the 24 hours are up.

They will probably give you a horribly ugly little bag that goes around your waist or neck to hold the actual monitor. I have found that if I wear a sports bra I can usually hide the monitor in my bra. (also make sure you take your bra OFF while they are putting the monitor on or your will be stuck wearing it for the full 24 hours) Another option is to wear jeans (or other pants with similar front pockets) and a long shirt. Just put the monitor in your pocket and the shirt will cover the wires coming down. (can you tell I've done this a few times?)

As for sleeping, I usually just set the monitor on the bed next to me and don't worry about it. If I roll over onto it, I just move it. If you don't want to do this, I would recommend wearing a tight tank top and tucking the monitor and extra wires against your abdomen or back (whichever you don't sleep on).

[NMPotsie]

I've also done lots of these, and long-term event monitors as well. I did not go off of any meds except the xanax; it was not necessary for my treatment so I was advised to avoid both it and sleeping pills. I have a major brady issue so they wanted to see that without the uncessary stuff. I was advised to continue my beta blocker and supplements. I think if they want you off of meds they tell you so long as they know exactly what you are on.

This may not be everyone's approach, but after my 3rd or 4th holter I decided to do everything that exacerbates my condition when I had one on so they could see it. I drank a bit of coffee in the a.m., stood up as much as possible, went outside in the heat, and drank some wine at night. They all aggravate my heart (and yes, I paid later).

It worked for me; my heart does something really, really wacky when I drink. They finally caught it. Of course, then I was told to NEVER drink, so that's no fun. I'm glad I saw it though, or I would have continued to endanger myself unknowingly.

[Guest Alex]

I've had several Holter monitors as well as 3 week long event recorders. I did not have to come off the meds or change my daily routine whatsoever. Your dr or the technicians who will hook you up should be the one to tell you, though, if there is anything you have to consider. They will also teach you how to use it, what to do in case you are symptomatic while wearing it, etc.

Good luck.

Alex

[Batik]

I'm trying to remember where I read that you should come off your meds. I think it was the study group for pulse pressure in POTs on FaceBook, and people were talking about coming off the meds weeks in advance. Surely they want to see what my heart is on its own, not when the effects are being masked by meds?

How to exacerbate the problem so that it shows up properly was going to be my next question! Merely going out of the flat on two consecutive days will do a fairly good job of that already. I was planning to try standing up a lot, and probably miso soup, since that always brings out one **** of a response (well, pouring with sweat certainly, never actually checked what my HR is doing).

I already knew about taking a shower, thanks. How big is the little bag? I always wear maternity sleep bras, as it's too painful for me to wear ordinary bras, and I'm quite happy to sleep in that. (I spend most of the day in bed already.) I already wear an emergency alarm pendant which is roughly 2" x 1.25" x 0.5", and I wear that tucked into my bra. Failing that, there's the strappy cotton camisole option.

I am now trying to ring the hospital to see if they know. There's something up with their switchboard, they keep trying to put me through to Clinical Audit. And then I ended up spending the next hour trying to ring various people about organising transport, which is proving to be a total nightmare. I now have about five different people due to ring me back, which guarantees that they will all ring at once while I am in the shower. I have a nasty feeling that I will be arguing for taxi transport or similar on the grounds that I can't sit around waiting for the ambulance patient transport service for hours, I'll pass out from sitting up (this happened, badly, last time I used the patient transport service), and they'll say, "Prove it with a letter from your consultant," and of course I have neither a consultant nor a diagnosis yet...

[Batik]

It looks like I'll be using the Red Cross transport service, which is relatively cheap and will include someone to push the wheelchair and take me into the appointment. The hospital said they give you 3-4 weeks' notice for the appointment, which is enough time to book that. They also said that they're currently booked up into December, and they haven't received my doctor's referral yet, so it won't be as close as I thought it would. I'm tempted to try a few days off my meds just to see if it does anything interesting to my HR, and then decide based on that. I'd hate to have the test wrecked by my antihistamines making my heart look better-behaved than it really is.

[NMPotsie]

Whatever you decide, good luck Batik. It sounds like you have it very rough. I'm so sorry. Be careful.

[Batik]

Thanks! The transport thing isn't really that big a deal, though I could have done without the morning of making phone calls.

My last dose of meds was yesterday morning, since I decided to give it a whirl. I slept really badly last night, which is the same as what happened the last time I was off the antihistamines. I did a home TTT this morning, and my HR jumped up much faster than it usually does. It was 68 when sitting just before the test (I almost never manage a true lying-to-standing test), and went up to 105 at 4 min, along with a relatively high BP of 142/116. For the next 8 min, my HR varied between 92 - 100, and my BP was fairly normal. Now that I'm sitting down again, it's 98/63, 72. As ever, I got itchy a few min after starting the test (and I'm still itchy now), eventually sweaty, nauseous (still nauseous now), hyperventilating near the end which is what made me stop. Most of that is the same as usual, but it generally takes longer for my HR to go up, often well over 10 min, and the nausea isn't all that common. So it looks as if this is indeed a useful way to do it. I'll try to do another home TTT later, and keep this up for a few days if possible.

Slightly later note: it's taking me longer to recover from this home TTT than normal, too. I'm still itchy and nauseous, my HR is taking longer to come down, even with lying down, and my BP and PP are still swinging about wildly.

Plan for this afternoon: miso soup for lunch, as it always brings me out in a massive sweat, and monitor my BP/HR around it this time. Probably go easy on salt and fluids today.

[StandUpSitDown]

I'd actually ask WHY the monitor is being used. In my case, I recently was given a 2-week monitor that still allowed me to take quick showers, and was invisible to everyone but my wife (well, for a guy that's easy as we wear full shirts vs. women who wear lots of clothes that expose their upper chests.) It's a size of a large band-aid, and it was called the "zio patch" from iRhythm. The reason I liked the two weeks duration is that it was only on day *5* that the issue that I felt rarely came up, so I was able to push the event button, and record THAT'S IT - and was relieved to find out it was normal. Further, we decided to change my beta blocker half way through the 2-week monitoring period and the doctor loved that - the 2 week monitor was able to show my better response to the new beta blocker, in detail. Overall, for MY purpose - to detect the value of the beta blocker change, and also to see what exactly that rare event was in me, the 2 week monitor was perfect. Your doctor may have different reasons, so this may not be appropriate for you, but could also your doctor may simply be unaware of this new technology.

Now this monitor is only two lead - the two ends of the 'band-aid'. If the doctor wants to see details of your heartbeat, that may not be sufficient. But if your doctor wants to largely measure heart rate, then this was a very cool, very useful thing.

*edited to fix typo

[Batik]

They're doing it as the first stages of investigating what is up with my ANS. I don't have a diagnosis yet, or even a specialist (this is being ordered by my GP). I'm not on any medication for my ANS, although I suspect that the antihistamines are making a difference there (which is why I'm off them today as a test).

I doubt that a 2 week monitor would be an option, to be honest. The one I'm getting is the sort which records your heart rate constantly, rather than the sort where you push a button. At least, as far as I know - isn't that how all 24 hour ECGs work?

[kds]

My doctor ordered a 24 hour monitor because of arrhythmias, and we ended up changing it to a 48 continuous holter monitor so that we could compare w/ & w/out compression hose. The cardiologists staff thought this was silly, but it turns out that the act of removing the hose (and keeping a close log of such things) demonstrated just how wacky things get for me when I experience pooling. I went into a short run of v-tach right after taking them off, and this data made even my non-dysautonomia specialist docs pay attention. I also followed advice found elsewhere on the forum and had the office send me my full results, which are technically "normal," but full of things I want to ask the dysautonomia specialist about when finally get there. My log was so detailed it annoyed the doctor who had to read the test, but it's been quite useful in helping me distinguish scary sensations that aren't dangerous from those that are.

[Batik]

Interesting. Though now you've all got me worried that a standard 24 hour ECG won't be enough to show up the problems. I haven't been tried on compression stockings yet, though the last consultant who saw me in A&E (ER) muttered something vague about them. Does anyone know if they're OK if you have dermographism? I had them on when I had my gallbladder out in March and was OK, but then the itchy skin thing does vary.

[NMPotsie]

I have dermo and itchy skin and I couldn't tolerate the stockings. I broke out in hives all over my legs.

Many of us start with the 24 hr. holter and then, depending on that, the docs may make a decision to do a longer one or repeat it. In my case, my brady/skipped heartbeats on the 24 hr. made them nervous about wolff-parkinson-white (or however you spell that) so I was given the long-term monitor to ensure that I didn't have this issue.

The Holter is actually more sophisticated than the event monitor because it usually monitors your heart with more than just two leads (I've always had four to six) and does so continuously so that they can see everything that is happening for you in a given day. The event monitor requires you to notice something is weird and push the button. I never noticed the brady or the skipped heartbeats, so the event monitor wasn't really helpful for that; I doubt they ever would have found them if I hadn't worn the Holter. I only logged what turned out to be instances of tachy in the 130s+. So a Holter is not inferior; it is a great starting point, and if you need a long term monitor they will probably tell you.

Don't worry about this; as far as tests go, these couldn't be easier. It's quite interesting to see all the weird stuff that may be happening with your heart that you don't even notice (though for your sake I hope it's beautiful, normal, and perfect).

[Batik]

In what sense do you mean "it couldn't be easier"? I gather that it's straightforward to undergo, although the effort of two trips to hospital is enough to be worrying for me. I'm just concerned that it will be yet another test which doesn't pick up the problems, or where the people reading it don't understand what to look for and decide that everything is normal when it isn't.

The home TTTs off antihistamines have been weird. The first one, yesterday morning, was exemplary, with a nice rise of 37bpm after 4 min. However, I took another late last night, a couple of hours after I'd had some valerian blend tea. My HR only moved by 5 beats! BP jumped around a bit, nothing too exciting. I took another this morning, after another appalling night's sleep and on an empty stomach, and it was little better. This is very strange, since usually I get some sort of HR rise, along with breaking out in sweat, getting breathless and so forth. Any ideas? I'm going back on the antihistamines anyway, I can't take more disrupted sleep like this without a very, very good reason, and the itchiness is getting on my nerves. So that wasn't as useful an experiment as I'd hoped.

[NMPotsie]

I just meant there's not a lot of prep involved, it's non-invasive, and usually the doctors will handle these pretty well. It's a procedure they've been doing for a long time. Unlike many of the other things we have to push for, in my experience the heart tests aren't one of them as cardiologists are pretty astute at knowing when/if you need additional testing, etc. for possible heart problems.

I totally understand your frustration with the repeated tests not really showing anything. In my case, my Holters did show stuff but none of it was really explainable. The issues weren't consistent. I had all kinds of really weird fits of arrhythmias, brady, tachy, but cardios were not able to explain them. Then, when I saw the neuro, he was like "oh that's because your heart is getting incorrect signals from your brain." So the heart tests were valuable for ruling out things, but not really for diagnosis. Not sure if that makes sense; I've got the brain fog.

I am glad my heart is ok, even if weird. This is one case where I didn't want to see anything on the tests. The idea is usually to rule out heart problems if they suspect it's your ANS.

I think Valerian is a mild sedative. Many of us are extra sensitive to all kinds of meds, so the Valerian might just really work for you. or, it could be a fluke; my symptoms come and go. I was afraid the TTT wouldn't show anything because I wasn't symptomatic the day I had it, but they keep you on there long enough that it absolutely did. Also, in my case, I was not allowed any meds prior to the tilt.

[Batik]

I don't usually take valerian in herbal tea form, because I'm quite likely to be needing it at night, and my urinary tract does not approve of drinking anything late in the evening. So normally I've taken it in capsules, and have found that it can help a bit with sleep. It had never occurred to me to see what it did to my BP and HR, I've not taken it in quite a long time. Though I did recently discover that taking sedating meds (co-codamol with diazepam) for pain relief knocks my blood pressure through the floor. I later realised that the 75/40 reading would have been artificially lowered because I was lying slightly on my right side, but even so, that won't have lowered it more than 5 or so more than the real reading. So maybe my BP/HR are quite responsive to sedating meds or something. Mind you, I still get all these symptoms despite being on sedating antihistamines. Who knows.

Right, with you about the test being relatively non-invasive. TTTs sound a nightmare. I'm willing to go through one because I'm that desperate to get diagnosed, but I am not exactly looking forward to it, and really hoping that it will show up nice, clear, usable results.

When you had odd stuff showing up on your ECGs, did that mean that you ended up getting fobbed off by doctors? I have grim memories of when I had a sleep study done. It sounds like it was showing up all sorts of problems with my sleep architecture, such as insufficient deep sleep, but the sleep centre was purely interested in sleep apnoea and narcolepsy, so the specialist just wrote me a sniffy letter about my "insomnia" (er, no, that'll be Non-24 Sleep-Wake Disorder, actually) and didn't even make a follow-up appointment. I bet there was oodles of useful stuff on that sleep study to someone who knew what to look for.

Maybe it's useful that I don't have a specialist yet, in that I can't have an ill-informed one scuppering the whole business? My GP's fairly good, is she likely to be able to read a 24 hou ECG well?

[Angela]

Interesting. Though now you've all got me worried that a standard 24 hour ECG won't be enough to show up the problems. I haven't been tried on compression stockings yet, though the last consultant who saw me in A&E (ER) muttered something vague about them. Does anyone know if they're OK if you have dermographism? I had them on when I had my gallbladder out in March and was OK, but then the itchy skin thing does vary.

Batik I have had both 24 hr eeg with heart holter and 2 week. The 24 hr showed my neuro that my resting hr/bp at night was normal and during the day both elevated enough to clue into POTS. Before that the assumption was silent migraines or siezures. I am funny though as most people notice when their heart races, I never knew mine did (upon standing) until I got the test. So if anything its a good indicator and medical documention that can hopefully get you to the appropriate specialist. the 2 week one was done later by my cardiologist I was referred to to rule out heart arythmia's. They also did an ultrasound of my heart to make sure nothing was wrong there.

[NMPotsie]

Ah, good question Batik (sorry, don't know how to do the quote thingy). My cardio really didn't know what to make of it. He was local and not very good. He basically did what you said--actually, the day before my appointment his PA called and said the doctor didn't want to see me as he couldn't help me and he suggested I see a psychiatrist for anxiety.

However, when i went to the Mayo clinic my cardio consult was much better. They came up with actual answers, and were surprised that my local doc had blown off a 6 second pause in my heartbeat and several 2-3 second skips. They decided it was probably a testing error, but repeated all the tests because, in their words, it was "anything but normal." My gp just read the report provided by the cardiologist that said it was normal, so he wasn't much help either. The neurologist referred me to cardio because of that report.

Still, they couldn't figure out why my heart was doing weird things until the neuro explained it. I guess it depends on the doc. If I were in the same position again I would ask for the entire report, insist my doc review it, and get a second opinion if there was anything on there that looked strange. I have learned to be more assertive now; back then, I just assumed they knew what they were doing all the time.

[Batik]

Right now I don't have any specialists dealing with the possible POTS, it's just my GP. Whom I trust more than random specialists, but while she has a lot of knowledge (she knows far more about PMDD [severe PMS] than the gynae I saw who was supposedly a specialist in PMS), I don't know if this is likely to go outwith her area of knowledge. I'll ask her who will be reviewing it, and probably request that she gets the full report in case we get a repeat of the sleep study situation.

24 hour ECGs just show heart rate, not blood pressure, right?

Please note that I'm talking about ECGs here, not EEGs. So whenever I say ECG, that means what Americans call a Holter monitor. Possibly you also call them EKGs for some reason, though I'm not quite sure.

[flyingsquirrel]

ECG = ElectroCardioGram (english)

EKG = ElektroKardioGramm (german)

EKG is the original name given to the procedure by Willem Einthoven. While ECG is technically the correct (modern) term in english speaking countries, many traditionalists prefer EKG.

A standard Holter test will tell you your maximum, minimum, and average heart rates over the 24 hours. It will also tell you if you had any abnormal rhythms (and specifically what those were). Some Holter software will print out a graph that shows your heart rate over the 24 hours so it is easy to see if your max/min were just a quick peak/valley or if they were sustained.

Holters are just EKG, no blood pressure, no anything else.

[Batik]

When I rang the Blood Pressure Association to ask about Holter monitors since I'd heard of them here, they said, "Oh yes, that means an ECG. No one says Holter monitor any more, it's a a very old name!" We are two nations divided by a common language, as someone or other said.

I'd heard somewhere that EKG was used because ECG had already been snaffled for something else in the US, though I can't remember what.

Yes, that's what I thought ECGs did. I'm not quite sure why someone mentioned BP. I didn't realise that they didn't all print out a graph, though. Surely you can't notice the whole >30bpm rise on standing unless you have a proper graph?

[Angela]

my bad, the 24 hr only showed my hr but I googled why hr only high during the day and normal at night and came up with pots, my cardio told me to get a 3 read hr bp cuff when I mentioned this concern and that's when we found my bp goes up.

[Batik]

What's a 3 read hr bp cuff? Did you have a 24 hour ambulatory blood pressure test run?