Sounds like AFIB to me. Most people with AFIB are older, but there is an increased occurence in people with autoimmune issues.
Do you take any Advil or ibuprofen?
Paroxysmal supraventricular tachycardia?
https://medlineplus.gov/ency/article/000183.htm
@cbreeze no. NSAIDs are contraindicated with one or more of my meds (I take about 12 so I can’t remember off the top of my head which…) I take acetaminophen if needed.
@Ctmom2018 that was my PCP’s first guess but it’s not episodic. My heart rate almost never goes below 100 for more than an hour or so a day.
I rather doubted it was something so obvious. Hang in there, they will figure it out.
Thank you, CT, I really appreciate it.
Even if someone just said to me “this is just part of your lupus (or insert other diagnosis here) and it’s going to be a thing for the rest of your life,” I’d be fine with that. It’s the fact that everyone seems so perplexed and that it’s not good for my body that makes me so frustrated. Sometimes I just wish I had a simple body with simple answers!
You mentioned they don’t think it is meds but I’m skeptical how they would know with certainty. I get the impression that because you have several issues you are on quite a few meds. Everyone reacts differently and when combine many, that can get tricky.
I hope you feel better!
@romanigypsyeyes I had something similar happen to me several years back and it was my thyroid. Woke up with racing heart, leg went numb headed for ER, the paramedics thought I was on speed. No history of narcotic abuse ruled that out. For several months after, same thing, racing heart, high anxiety- I mean the phone would ring and I’d jump out of my shoes- finally went in on Christmas Eve to ER and said doc, something’s wrong. He said I’m sure it’s just holiday stress, but I kept insisting it wasn’t. So he said let’s test for thyroid, and sure enough next week, levels came back abnornal. After iodine testing at the bionuclear facility, they found a goiter the size of a grapefruit on my thyroid.
Please keep after them until they find a solution. I know that I felt like I was going mad when it was happening. Best of luck
Are you anemic? Anemia makes the heart work harder and faster to keep up with the body’s oxygen demands.
Hugs to you.
What looked like a bug bite became red and inflamed, and today I’m going into hospital for surgery. Mersa probably. I hate the unknown, and I hate canceling a full day of patients.
I can’t imagine how tough it is for you to deal with all these unknowns.
Your fellow Romanian
I read over your list of initial tests but I can’t see the answer to this:
Have you had an echocardiogram? (I saw you had an ultrasound of your legs though)
I’ve heard of restrictive pericarditis in lupus but have not seen an actual clinical presentation.
Also…many times a 24 hr Holter monitor is not enough to really capture a consistent pattern. An event monitor can provide monitoring for 2 weeks to a month.
@bookworm, wow! Good luck to you, hope it’s all fine.
@carachel2, Romani stated in the OP that she had an echocardiogram at the cardiologist’s office that was normal.
@Nrdsb4 …thanks! One day I will learn not to post before I’ve finished that first cup of coffee lol!
Though you say it is sinus rhythm, the varying heart rates and irregularity, as well as palpitations sound very much like A fib. Episodic issues can be PSVT, You can have sinus rhythm with PACs or PVCs which are extra, or early beats, causing irregularity. But sinus rhythm itself is regular. Some folks go in and out of A fib all the time. Others get stuck in A fib and need medications or shocks or both to stay in sinus rhythm. Making sure your potassium and magnesium are at the high end of normal is a good idea, as long as your kidney function is normal.
Clonidine is typically a BP med, not for HR, though it has a number of other uses.
I am seeing two separate but interrelated issues here. Identification and treatment of the heart rhythm, and then causative agents. Thyroid issues can cause A fib, as can dehydration and electrolyte imbalances. I’m glad the echo was ok, as that covers a host of issues.
As mentioned above, an event monitor can be more useful. As can a new cardiologist if this one does not come through.
Googling lupus and heart, it could very well be your lupus. How was the echo related to your worst symptoms in time?
I would not expect the ER to get to the bottom of this, rather to just check an EKG and cardiac enzymes to be sure nothing acute is going on. As you noted, both you and lupus are complicated, and this is a longer diagnostic work up! Keep us informed.
Bookworm, wishing you the best! Kajon, your post was fascinating, as friend has had something similar. Will copy and send to him.
Since Romani was symptomatic when she went to the ER, it seems that if she were in A-fib, they should have been able to capture it. If not in the ER, then during a 48-72 hour Holter monitor test.
I agree that getting a second opinion from another cardiologist couldn’t hurt, though. Maybe try an EP doc, who specializes in cardiac rhythms.
Hoping for the best for you.
Romani - If I recall there are a couple of pharmacists on CC. Perhaps if you list your meds, one of them may notice a potential interaction which could result in your heart rate issues.
I wear the fitbit HR which graphs my HR 24/7. It is interesting to look at, but not a sub for an EKG as it takes an average rate over a 6 second period.
Heard back from my PCP. No availability this week but I did ask for a TSH test (and anything else related to my thyroid). She is my mom’s PCP too so she is well versed in Graves, etc.
Cardio is waiting for my ER test results to come through.
I was anemic when I was younger, but none now. They did do a full metabolic panel in the ER plus iron and B12. All came back normal.
My white blood cell count was elevated (as it always is) and so was my RBC and RBW (only slightly but that’s the first time they were elevated).
@bookworm I’m so, so sorry. Please take care and I wish you the best of luck. (PS: I’m Romani- Hungarian. But close enough! Those populations all mixed for thousands of years lol)
Yes, had an echo about 2 weeks ago. Came back normal.
I will probably get a second opinion from a UMich cardio after I meet with both my PCP and current cardiologist.
@Kajon med list:
Orencia (Abatacept) - I also get a round of IV steroids on treatment day
Cardizem (Diltiazem)
Allegra (Fexofenadine)
Flexeril (Cyclobenzaprine)
Clonidine
Nexplanon
Pamelor (Nortriptyline)
Plaquenil (Hydoxychloroquine)
Prilosec (Omeprazole)
Vit B12
Vit D3
Zantac (ranitidine)
Zoloft (seratraline)
[Acetaminophen and zofran when needed]
Other meds I’ve been on during my heart issues but am not currently:
Toporol
Prednisone
Lyrica
Mobic
Several rounds of antibiotics (more than one type)
Several different anti-nausea drugs (can look up which kinds if needed, just don’t know off the top of my head)
Second the EP doc. My mom had a great one (sorry, @romanigypsyeyes - from the area, but now retired). He was key in diagnosing her heart issues. UM is a great choice for a second opinion. Best to you as you work to get to the bottom of this.