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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Heart arrhythmia, ER, Worse than ever.

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It was also helpful for me to get my own blood pressure cuff and heart rate monitor watch. Having access to the information let me know what was really going on when I felt off, at least in those limited areas.

Be aware that those things which take BP and heart rate.. may constantly fault if one is getting arrhythmia. I cant take my BP when my heart is going everywhere as it just completely faults the monitors out.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Like Dannybex, i am concerned to know how Chris is. I agree that this is a serious situation that needs sorting out properly. I do hope someone can let us know how Chris is soon.
Justy xx
 

xks201

Senior Member
Messages
740
Clonidine and Losartan work wonders for me. It is my theory that in CFS and FM there is enhanced norepinephrine stress. Those two drugs work great for that and probably have the best chance of stopping the arrhythmias. I know because I was airlifted to a university hospital with a 200/140 blood pressure and a 140 pulse that would not go down for days until I demanded these two drugs after I was released. My EKG showed I was having a heart attack with a tombstone readout (which most people do not survive). There was no heart damage and therefore apparently no heart attack. This gives you an idea of how crazed the sympathetic nervous system can get in CFS. If I save your life, thank me later.

As for the stomach problems and the heart problems...all are symptoms of an overactive sympathetic nervous system. This can be genetic, from active infection, and or from hormonal problems.

My cardiologists were useless - they sent me home on a calcium channel blocker with dangerously elevated blood pressure. I have no faith in doctors, partly because they prescribe drugs and really do not give a crap about follow up or underlying mechanisms to disease.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I wonder why we're not supposed to do it (Valsalva maneuver) if we have moderately low blood volume? I could see that being the most common contradiction for ME patients.

I don't know. I've been doing it since before my ME/CFS/NMH onset. Maybe I have low blood volume now and I shouldn't be doing it? I have no idea what my own blood volume is since it's never been tested.

These things are all so complicated. That's why I gave as many details as I could think of about my own SVT situation. We are all so different and there are so-o-o many variables to consider. :confused:

Although we may share the 190-200 bpm heart rate symptom, Chris may have a completely different kind of SVT (or it may not be SVT). And he has many symptoms that are different from my own. And sadly, as others have pointed out, some cardiologists are completely useless for the kind of problems ME/CFS patients have. I do hope Chris gets the help he needs.