• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cardiology Appt Update

Gingergrrl

Senior Member
Messages
16,171
I wanted to report some positive news after my previous post ranting about my ER visit earlier in the week. I saw my cardiologist today and even though she doesn't know a lot about CFS she was incredibly helpful and supportive. I brought her a journal article and some info about the tests I want and she read them and took them very seriously.

She ordered an echocardiogram for me next week to check for diastolic dysfunction which is one of my fears from what I have been reading re: CFS. I had this test about a year ago but at that time, I did not have all the POTS symptoms, OI, and trouble breathing while standing up. She felt we needed to repeat it to see what is going on and I was really happy about this.

She altered my Florinef dosage a little and is contacting another cardiologist who is more familiar with dysautonomia to consult. She agreed that the ER is not helpful unless you are having a heart attack and validated my bad experience there. So, while my symptoms are pretty much still the same, I feel hopeful that someone is taking them seriously and I will have an echocardiogram to see what is going on.

Thanks again to all you guys for all your support.
 

Gingergrrl

Senior Member
Messages
16,171
@Valentijn, @Sushi I wanted to get your and everyone's opinion on this...

Even though my cardiology appt went well, it is so ironic b/c a symptom that I had not had in almost a year came back today :mad:.

When my tachycardia first started, it always happened in my sleep and it would wake me up. At the highest, my HR was at 177 in my sleep. It had nothing to do with standing up so my doctor said it was "Inappropriate sinus tachycardia" (IST) and started me on beta blockers.

With time this completely shifted to where it was no longer occurring in my sleep and was happening when I stood up or stayed standing up (more of a POTS/OI phenomenon.)

Yesterday at my appt, I told her how I had not had the TC waking me up in my sleep for almost a year and she thought that was a great improvement (as did I) and that we were trying to treat the POTS part with Florinef.

Well, this morning around 8:00 am, I was awoken from a deep sleep by severe TC in the 170's again! It finally went down and I took the Atenolol but it makes me fearful to go to sleep again and I can't believe the irony of it happening one day after I told my cardiologist it was not happening any more!

Has anyone else had these episodes of extremely high tachycardia in their sleep? Is it a cardiac issue or a dysautonomia issue?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
@Gingergrrl43

I've been awakened by tachycardia but it was Afib, not "Inappropriate sinus tachycardia." Have you had an EKG done during one of these episodes to make sure that it was IST and not something else?

Sushi
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl43

I've been awakened by tachycardia but it was Afib, not "Inappropriate sinus tachycardia." Have you had an EKG done during one of these episodes to make sure that it was IST and not something else?

Sushi

@Sushi, Yes I have worn a Zio Patch monitor three separate times (each for a about a week at a time) which is like a continuous EKG/Holter type monitor) and for every episode, my heart stayed in sinus rhythm. My cardiologist said my heart would very quickly spike super high but always sinus tachycardia and never any other arrhythmia. Her first comment was that she had seen this in women who had mono/EBV in the prior year (which was me) but that it usually went away on its own within 6 mos to a year (which has NOT been me.)
 

Gingergrrl

Senior Member
Messages
16,171
My echocardiogram is tomorrow and hoping it all goes smoothly and will give an update when I get a chance. I am hoping I can get the results in time to bring to the CFS specialist. Thanks again to everyone for all your support during my whole tachycardia saga :)