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

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Heart issues

Gondwanaland

Senior Member
Messages
5,092
That makes a lot of sense seeing that everything else in my body seems to be very low. I see my Primary care doc in two weeks for blood work so I'll add these to the list to check.
Thanks
Jerry Mc
I think that only a functional/intergrative health practitioner knows how to assess mineral levels since serum levels are tightly regulated for homeostasis and will only show alarming variations if you are half dead :eek:

http://www.easy-immune-health.com/normal-potassium-level.html
this does not address What Causes Low Potassium
http://www.easy-immune-health.com/magnesium-level.html
magnesium is not IN your blood. In fact, 99% of the magnesium in the body is in the cells; while only a mere1% of your the body’s total magnesium is in the blood, making a blood test for magnesium nearly worthless in all but the WORSTmagnesium deficiency.

I know nothing about testing for B1 since this test isn't available here where I live.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I've got another variation. My O2 level goes down to the lower 90s or upper 80s, but my pulse stays the same (which may be in the 90s, but may be lower) and I have no SOB.
 

Gingergrrl

Senior Member
Messages
16,171
I've got another variation. My O2 level goes down to the lower 90s or upper 80s, but my pulse stays the same (which may be in the 90s, but may be lower) and I have no SOB.

@Little Bluestem Wow, I have not heard of that before! How often does that happen to you? You mean your 02 level goes into the 80's and you have no shortness of breath or tachycardia? That is so strange... but then again all of these different dysautonmias are strange!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@Gingergrrl The Mestinon was supposed to help with the tachycardia but it's not helping at all. I have slightly high BP most of the time but when I stand it drops and my heart rate goes up to 140's. When this happens I get light headed and my legs go weak and feel like jello my whole body starts jerking with seizure like movements. I fall sometimes fast sometimes slowly but never pass out completely. The worst two falls were once on the drug store I went down and took out a shelf full of merchandise with me (VERY embarrassing) the other I fell outside at home and broke two ribs (VERY painful).

I can get that happening too with the dizziness, my legs and with the jerking seizure like movements (one of my support workers almost was hit the face not too long ago cause my arms spasmed so badly that my hands and that got flung out). I like yourself can fall slow or go down hard like a rock. I have passed out thou. Due to all this, I once had a hard fall into the pharmacist window which brought everyone running to see if I was okay. I fortunately havent broke any body parts so far in my falls except spained my ankle in one of those falls (I fell onto the ankle) and ending up with lots of bruises.

i dont usually get short of breath but I have got chest pains, very bad on several occassions (felt like I was having a heart attack) due to the ME or the dysautonomia. Your chest pain thou seems different to mine, mine has usually occurred when Im up doing things, I cant remember it ever occurring while laying down.

I strongly suggest you try to get onto a different drug for the POTS seeing the one you have isnt working. Im on Florinef which is the most common drug used for POTS (my CFS specialist said that not many of his POTS patients have responded well to beta-blockers for it). Im also on Clonodine as I get high BP spikes thou mine can fall too but on rarer occassion.
 
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Little Bluestem

All Good Things Must Come to an End
Messages
4,930
@Little Bluestem Wow, I have not heard of that before! How often does that happen to you? You mean your 02 level goes into the 80's and you have no shortness of breath or tachycardia? That is so strange... but then again all of these different dysautonmias are strange!
It only goes into the upper 80s, but I do not have any shortness of breath or tachycardia. It kind of goes in spells. It may not happen for days, then may happen a few times in one day (probably PEM related). It usually lasts only a few minutes. Once in a while it lasts up to 30 minutes. Then I lie down until it improves. If I stayed active, I might get SOB.
 
Messages
3,263
@halcyon That's interesting and for me it is totally different. I feel breathless as if I had run up a flight of stairs and when it is really bad, I feel like a tight belt is squeezing around my entire chest and back or something really heavy is on top of my chest. But it doesn't feel like squeezing or bruising for me.
That describes the sensation I feel exactly, @Gingergrrl. Somehow reassuring to hear someone else has a similar experience!
 

optimist

Senior Member
Messages
434
Location
Norway
@Little Bluestem I Love your signature line....

For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace.
Isaiah 9:6

She had Casting Crowns here the other day - I think we are in tune :D (Got it? That was a play on words, I think)
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
had cardiac stress test, echo cardiogram and CT scan. Nothing was found abnormal in any test. I'm still having chest pain. My heart hurts lying still and after exertion, could there still be a heart problem
maybe vasospasm
In some cases, Prinzmetal angina is thought to be caused by "endothelial dysfunction," that is, when the inner lining (i.e., the endothelium) of the arteries do not work normally. Endothelial dysfunction is also associated with cardiac syndrome x, Raynaud's phenomenon, and migraine headaches.
When Temporary Spasm in a Coronary Artery Leads to Chest Pain
http://heartdisease.about.com/od/chestpainangina/a/prinzmetal.htm

with an immune angle thrown in
 
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Gingergrrl

Senior Member
Messages
16,171
maybe vasospasm

@Sherlock My cardio thought I might be having microvascular spasms (in the tiny arteries, not the main ones which were ruled out) but we are now thinking this is unlikely and my issues are all autonomic from low blood volume, low BP, dehydration/electrolyte issues, and now I really think I have orthostatic intolerance as well. It is so hard to ever know what is going on for sure!