Anyone have experience with a 30 day holter moniter?

[Urkittenme]

Hi everyone,

I saw a 2nd doctor on Monday, she's an absolute gem. I feel so lucky to have been paired up with her, I feel that we got along very well and she took me seriously! Even more exciting, she's HEARD OF pots/eds/mcad although she somewhat dismissed this based on no family history (my entire family has a multitude of health problems but no diagnosis of EDS)

The first doctor I saw performed an ECG, my HR didn't seem to slow much, and my ecg showed:

Sinus tachycardia

Right atrial overload 

Probable myocardial infarct

Right bundle branch block

Cardiomyopathy 

My new doctor decided to perform her own ecg, and upon returning to the room she told me the results were normal (interesting..but I'll take it), and that she suspected svt (supraventricular tachycardia). She ordered a 30 day Holter moniter, which I will pick up on Monday at the local hospital's cardiology dept. She also noted while she was manually listening to my heart that she could hear my heart speed up with every breath, I'm assuming this is related to EDS.

I'm curious if anyone has experience with a 30 day holter moniter?? All of the info I'm gathering online is about 24-48 hr monitoring, and the 30 day event moniter. It's my understanding that she has ordered the continuous moniter for 30 days.

30 days!! I know that my symptoms are related to standing up. Am I going to have to record every time I stand up and sit down for 30 days? My heart rate instantly goes up to 115-130 from the 70's and instantly drops when I sit. I have to take so many breaks throughout my day!! (It kinda reminds me of that parody song of stand up, drank [water]..anyone?? Here's the link if you need a laugh )

 

My other question is about chest pain. Do I record EVERY incident of chest pain, no matter how mild?  I really think that most of my chest pain is because of the pots and not the heart issue(s). I explained that, usually, the pain is very mild [1-3 on pain scale] about 6-10x daily. After having to give this answer in her office I started paying close attention and it seems like the chest pain is all over the place. Throughout the day I'll have bouts of general left chest pain, specific left, general right, specific right, right with back pain, left with arm pain yadayadayada! Sometimes only a few seconds, but after exertion it lasts longer, no longer than a minute. Oh my gosh how am I going to write all of this down for 30 days? Is it necessary to write down every bout of pain? I write it all OFF in my mind so I think when I am wearing the moniter, I will be less inclined to record incidents because I don't want to overwhelm my doctor.

I think I might fill up half a page just cooking dinner. Stand up. Turn on burner. Sit down. Get up to cook. Nausea. Crouch down on kitchen floor 1 min. Stand up continue cooking. Sit on couch. Back to cooking. Stretch. Cook. Sit. 

I'm also wondering if there will be someone checking the results periodically, or will my doctor get one lump sum of information at the end of 30 days? I can't imagine it taking 30 days for them to get the results they need. 

If you've had a 24-48 hour test and have any advice as to what I should expect, I would love to hear it. Also if you've had a 30 day holter OR event moniter, I would be so so great full if you could private message me about what your bill came out to! I am definitely not looking forward to the bill although I do have decent insurance.

 

Stay salty, lovely potsies!

[DizzyGirls]

My daughter had a one of those that you stick on your chest and she wore it for 12 days.  It was supposed to be for two weeks, or as long as she could stand it.  Truthfully, she could have stood it longer, but the tape was really irritating her skin.  She has MCAD along with EDS and Dysautonomia.  There was a button that you pressed every time you felt your heart do something that it shouldn't.  She is young, 20, and doesn't have any children, lives at home, etc., so it was easier for her to write little explanations down (probably helps that she's a writer, too!).  But, they did say that even if you don't write anything down (they do encourage you to write even a word or two), that it would show up on the monitor.  So, if you don't get to write something down for every single time your heart does something wonky, I wouldn't worry about it.  With these type (can't remember the name at the moment), when you take them off, you put them in a box and send it to the address on the instruction form.  They download the information and send the report to your cardiologist.  My daughter's came back normal and her cardio also stated that her heart rate runs high normally.  For her, high 90's is about her low.  When it goes lower, she feels bad.  So we keep it about there and it's ok.  She takes her propanolol so it doesn't jump into the 150's like it was, and that part of her POTS is doing well.  We were dealing with a neurosurgeon recently and, for some odd reason, she didn't like the fact that my daughter took propanolol and it was her suggestion that she go off of it.  Huh, since when did a neurosurgeon become and expert in all things POTS?!  We said 'no thank you' and that it was one of the only pills that she takes that was actually working extremely effectively, so don't mess with it!

Hang in there and I hope you feel better soon!

[statesof]

Hi Urkittenme, I did the 30 day holter monitor a while back I believe mine did not have have a button that I pressed, I think it just self recorded whenever my heart rate or vitals were in the abnormal range. I was told to take some notes of if I was doing physical activity certain days or if I experienced symptoms like chest pain and things like that. It wasn't to big of a deal it was just nice to not have to keep wearing the leads everyday.

I'm pretty sure for mine my doctors basically got the information after I turned the holter monitor in, as for if you should indicate when you have mild chest pain I would ask your doctor; maybe even taking notes for when its mild versus severe and give those to your doctor when you turn the holter monitor back in?

[Urkittenme]

@DizzyGirls thank you for the thoughtful response. I ended up having to stop the metoprolol I had been taking for about 3 weeks because I was having difficulty breathing, an extreme increase of constant chest pain, and overall breathlessness no matter what I was doing. My doctor says I have no signs of asthma so I can only assume it's mast cell related (many other symptoms). It's such a bummer because it helped my heart rate so much! I am SO glad your daughter doesn't experience any serious side effects from the beta blocker because of the mast cell issues, is this because of her mcad regimen? I am a homemaker for the time being, (will hopefully begin my pregnancy journey soon) so writing out my daily activities will just be somewhat daunting for 30 days. It's so silly that we HAVE to know as much (and in most cases, more) than the doctors treating. Thank God for this blessed forum and all of the helpful insight I have learned. Thanks for the well wishes.

@statesof hi there, thanks for taking time to respond! I have scoured the internet for someone who has had the 30 day to get an insight. I really hope I don't have to press a button every time I have symptoms...because that would be every time I stand up, and ohh my gosh with all the water I drink I have to use the bathroom soo much..I'm definitely going to clarify with them if I need to write down my mild pains as well. As far as physical activity...lmao. "yes well, you see...I was watering my plants, some very strenuous stuff obviously, that's why my heart was 165+" hahaha. Did anything beneficial come from your report? My grandfather and uncle have a-fib, and both parents have had heart attacks in their 40's so I'm guessing this is just the first of many tests to come. 

[haugr]

I did the 2 week monitor.  The doctor didn't get the results until it was over.  I think it may have automatically sent things when it detected symptoms because my results showed some heart rate increases during times when I was exercising and I was pretty sure that I didn't push the button.  But I think that it is helpful for them to see the button presses so that they can tie charts to when you are experiencing symptoms.  When he reviewed my results with me, he was mostly focused on my chart during the button presses.

[statesof]

Hi Urkittenme, the 30 day holter for me didn't provide all that much new information for my doctors; for me my symptoms never really correlated to my heart rate but it did show me tachycardic at times but the numbers weren't too crazy.

My vitals aren't really a good indication of my symptoms and my hear rate does not typically get as high as yours does. What the test did do is rule more stuff out and I was then referred to have a bubble study and stress test, which they then diagnosed me with a PFO, and with all the tests they were able to say my chest pressure is probably related to my POTS, may have microvascular angina but at least my heart is overall healthy.

[Urkittenme]

@statesof glad to hear your heart is healthy overall. It can be so difficult to know when we should worry with all the different symptoms we tend to experience. Hoping my issues are nothing to worry about as well. I just learned that tachycardia itself can cause cardiomyopathy which I find interesting as many of us are told pots isn't dangerous. I appreciate you getting back to me!

[htberg]

I had the 30 day monitor.  I had a button to push when I felt like passing out.  My heart rate goes very slow and sometimes the dysautonomia just forgets to keep my heart going and I have to do something to get it to jump start again. It constantly recorded but paid special attention to when I pushed the button and at times it went off on its own like when my heart rate went below 40. It was not really a pain to wear other than the sticky pads so I had to switch to non-allergenic ones.  It did seem to be based on my bill that I was charged for every time I pushed the button along with the standard 30-day rate and you get charged for anything that needs to be interpreted.  Several times I pushed it said I was fine so I'm not sure how much I really learned from it.

[Urkittenme]

@haugr oh I missed your reply I'm sorry! I'm stressing a bit about having to press the button. It seems that my symptoms of dizziness, lightheadedness, pre-syncope, and palpitations are so frequent, pretty much every time I stand. The chest pain is way too frequent to press the button..and too minor, I think? I wish that my doctor would have started with a 24hr moniter, but I plan to voice these concerns when I go to the cardiology office. (I was pushed back until this Wednesday, so yay...more sitting around worrying.) My doctor believes I may have svt and I have no idea what this feels like, so hopefully the moniter will catch it on its own. I just know my chest feels wacky 100% of the time and I'm pretty sure they won't want me to hold that button down 100% of the time. Lol!

@htberg bummer you didn't learn much from the heart moniter. I'm not sure I've ever had issues with bradycardia but it will be interesting to see what my lowest resting rate is when sleeping (or if I will be given that information)? Luckily the cardiology office informed me that I will be pre-paying so hopefully I don't get charged for extra button presses! I am thinking I may not press the button at all (if that is the type of moniter I recieve) and just keep a VERY detailed log of my activities and symptoms, so that when I review with my doctor, I can reference the diary. I don't want to be brushed off for pressing the button often because I have a feeling most of my chest pain is nothing to worry about. A heart rate in the 40s is very low, isn't it? Was your doctor worried at all about your results? Thank you for your input!!

 

If anyone has ever requested the report, how detailed is it exactly? I'm assuming it's a one page report with highlights of any abnormalities? Does it include ecg of the abnormal parts (if you had any)?

I'm thinking that I'll try experiments throughout the month. For example, maybe one day I'll have an extra cup of coffee or two (usually have one 8oz cup). Another day I'll have a glass of wine at night to see if that has any effect on my heart. I don't do much other than yoga but I'll do some cardio one day. Although, Saturday I climbed 4 flights of stairs, and boy did I pay that night (pounding heart & insomnia) and spent Sunday recovering! Unfortunately I am hoping the moniter shows SOMETHING other than sinus tachycardia so that I can get a referral to a cardiologist for an echo, perhaps a ttt from there..even if it's just for peace of mind! A couple hr moniter apps show mild arrythmia but I'm not sure how accurate those are.

[haugr]

My report was 10 pages or so.  Mostly EKG charts of the button presses with their time stamps.  Then there was a summary page that was the cardiologist's conclussions.

[Urkittenme]

Thanks for the summary. I got an event monitor that only records when I press *sigh* so much for figuring out what's going on, I'm sure all that will come up is normal rythymn tachy. Hoping that will be enough to get me to a cardiologist for am echo.

[Buzzbev]

Just got voice mail from Dr office after they received results from 14 day heart monitor (Zio patch). Said everything looks fine , see my primary care Dr if still symptoms. I'm so mad at the callousness! Yes I'm still having symptoms & how could something recording my heart for 14 days not pick that up? Sometimes it feels my heart's beating out of my chest. Sometimes I gasp as it skips a beat then beats hard. Often fluttering. Almost every night sense of electricity in mychest. How could a monitor not get this?

[MomtoGiuliana]

Buzzbev--I have to say that sounds like a very common experience among patients here.  Do you have any diagnosis?  I would try to make an appointment with the dr who ordered the test as a follow up, so he or she can advise you on what do next, since you have symptoms.  Ideally it sounds like you may need to see an expert in dysautonomia.

[Urkittenme]

@Buzzbev gosh I feel your frustration. That is exactly what I'm worried about. I can't believe it's been *this* hard for me to even get a referral to a cardiologist. 

@MomtoGiuliana do the specialists take patients without referrals? I don't think anyone is taking me seriously because I look so healthy. Ugh.

[pixiegram]

I had a holter monitor on for 30 days with the cellphone like thing on my waist. When that was done, my Cardiologist and Neurologist decided they wanted more information so a Loop was implanted in my chest. I have to carry a small recorder that I have to put over my heart if I'm having problems with syncopation, racing heart, breaking out in a sweat, etc... There is a transmitter that I have to keep within 6 feet of my bed that sends transmissions in during the night while I'm asleep. I'll have the Loop implant for 1-2 years apparently.

[Urkittenme]

@pixiegram hey there, I'm curious-  (and probably too curious, if so I apologize) had you gone through other tests (like ecg or 24hr holter) that showed anything that your doctor's requested the monitor for? Did yours auto trigger without you having to press a button? I understand your doctors wanted more information..did they get anything useful or helpful from the 30day report? By the way- welcome to the forum!

I have yet to press the button during episodes of chest pain because if it is nothing I'm afraid my doc won't take me seriously  I almost think the 30 day monitor was a way to push me to the back-burner! Bummed because my doc seemed so nice.

[MomtoGiuliana]

16 hours ago, Urkittenme said:

 

@MomtoGiuliana do the specialists take patients without referrals? I don't think anyone is taking me seriously because I look so healthy. Ugh.

That probably depends on your insurance.  I have insurance that allows me to make an appointment with any specialist without a referral.  I suppose some specialists want a referral before they will see a patient but I have not had that experience.  It seems to come down to insurance policy requirements.

[Urkittenme]

@MomtoGiuliana I guess what I should have asked is 'would they take me without a diagnosis'. I have the highest tier PPO coverage, yet every cardiologist I have contacted wants a referral. With my family history of heart attacks and a-fib I did not think I would have been denied this many times. Even my doc said they wouldn't take me without more evidence. But thanks for the response, that definitely gives me hope. I will just have to keep trying.

[MomtoGiuliana]

I would think they would take you if you describe symptoms--as long as they can bill your insurance without a referral.

Do you have a general practitioner? 

[Urkittenme]

@MomtoGiuliana so far I've seen 2 PCPs after being denied from several cardiologists. I went to a clinic and had an abnormal ECG. I almost feel that alone should warrant the cardio, but still am being asked for a referral by the offices that I have contacted. I saw a 2nd doctor, my new PCP, who doesn't think there is enough information for a referral, which is why she ordered the event monitor. If, when she recieves the results, says that everything is fine and I don't need a cardiologist, I just don't know what I am going to do. You actually just gave me the idea to call my insurance and see if they can do anything to assist in finding an office, so I think I will do that today! 

Has anybody been referred to a cardiologist with tachycardia alone without heart abnormalities? I do believe there's something else going on but if the event monitor doesn't catch something else, should I be able to insist on the referral from my primary care doc at the follow up appt?

[Guest KiminOrlando]

My insurance doesn't require a referral, but the pulmonologist wouldn't accept me as a patient without a referring physician. I pay extra for insurance so I don't have to get permission to see a specialist and still couldn't get in without permission. 

This is not a good trend. I never would have been diagnosed if this was the case back then. Most doctors in Orlando STILL don't agree that there is anything wrong with me. 

What is causing this?

Kim

[Urkittenme]

@KiminOrlando this is the exact issue I am having  I wish I could understand why. I'm starting to take photos of the physical things (blood pooling, livedo reticularis, raynaud's, ect..) associated with eds...it's harder with pots, I just have a bp cuff at home I use to determine how the day is gonna go..but that can be used to document evidence as well. Others have also suggested an o2 monitor. What I'm getting at is, eventually I will gather all this and write a letter to the specialists in my area (got the idea from the forum!) explaining symptoms and support with my own documented evidence along with any doctor reports I have. This might be something you can do as well? Hopefully someone else knows more but that's my suggestion. Good luck~

[Buzzbev]

Yes my do is concussion & whiplash from car accident. They guess dysautonomia is from concussion but possibly from neck affecting nerves. But regardless of cause of dysautomnia, it's amazing that a heart monitor wouldn't pick up such irregularity. I had 2 weeks of blood pressure drops (not POTS) they are still miffed about. Finally my PT noted big heart rate fluctuations during Buffalo Protocol (treadmill) test.

Momtoguliana: I had to shop for years for good primary that will give me a referral anywhere I want her to as long as I come see her 1st for evaluation on it. Anyway, you may want to switch if yours doesnt. Keep calling cardiologists. Some will take without referral.

Urkitenme: Do push the button on the monitor when symptoms. Keep detailed log of symptoms, matching exact date & time. Hard to argue with good detailed log. But no symptoms= nothing there.

 

[Urkittenme]

16 minutes ago, Buzzbev said:

Urkitenme: Do push the button on the monitor when symptoms. Keep detailed log of symptoms, matching exact date & time. Hard to argue with good detailed log. But no symptoms= nothing there

I've been pressing 2-3 times a day when my HR goes above 110, but the most strenuous things I've done so far are dishes, laundry, and walking around the grocery store. I will start keeping a log. Thanks for the advice