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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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Can you have POTS without the heart rate going up a lot?

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@redrachel76
POTS is pretty simple to diagnose in my opinion.

In fact, I diagnosed myself(as I did with all of my official diagnoses) before I was officially diagnosed by a cardiologist.
However,as always,(in at least all of my experiences with doctors) when you "know too much" about your condition,it seems to rub doctors the wrong way
and they will quickly dismiss you out of narcissistic behavior.
In simpler words, they will not treat you and will ignore all facts you place in front of them.

Now,
Back to the topic.
All you need is a blood pressure/pulse home model machine. Omron is the most accurate, IMO.


1. lay in the supine position on your bed for around 10 minutes relaxing then take your blood pressure/pulse
and record it.keep the sleeve/cuff attached.
2.immediately stand up right after step 1 and take your blood pressure/pulse as many times as the machine will keep up during the 10 minute required time for the diagnosis of POTS AKA "poor man's tilt table test.
*Note if your are a fainter have someone there who can catch you from falling if you pass out*
If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse or goes over 120 beats per minute of your recorded supine heart rate/pulse in the 10 minutes of standing.
You have POTS.It is simple as that..

What does the blood pressure reading mean during this test?
The only role your Blood pressure plays in this test is to determine what type of POTS you actually have.
1.If your blood pressure continues to drop during the test you have the Neurally Mediated type of POTS,
AKA low blood pressure.
*This is the form that you will pass out on if you pass out*
2.If your blood pressure continues to rise during the test you have the Hyperadrenergic type of POTS
AKA high blood pressure.
3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
This means you have the unaffected blood pressure form of POTS.
4. if you have the 1,2 and 3 type of POTS as I do,you are pretty much screwed as to getting pharmaceutical help! This is the rarest form of POTS and by my calculations, since I'm a man, we make up only 15%
of all known types of cases combined ..As I have this rarest type of POTS, there are only around 15k to 25k cases including myself in the US..
I have not yet to find any information on this type to even give it proper name!!

I am by no means a doctor.
I'm just a concerned man who had to do my own research in order to find the proper help or in simpler words,
I am basically my own primary care physician.
 
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zzz

Senior Member
Messages
675
Location
Oregon
@redrachel76
1.If your blood pressure continues to drop during the test you have the Neurally Mediated type of POTS,
AKA low blood pressure.
*This is the form that you will pass out on if you pass out*
2.If your blood pressure continues to rise during the test you have the Hyperadrenergic type of POTS
AKA high blood pressure.
3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
This means you have the unaffected blood pressure form of POTS.
4. if you have the 1,2 and 3 type of POTS as I do,you are pretty much screwed as to getting pharmaceutical help!

Fortunately, type #4 is treatable (as well as all the others).

Swings in blood pressure back and forth are due to low blood volume. Although it's not easy to raise blood volume permanently, it's actually rather easy to raise it temporarily through the use of saline IVs. These have the effect of making you feel anywhere from moderately better to completely better for their duration, which is generally anywhere from a few hours to about 48 hours. With regular application, the benefits tend to accumulate for most people over time. This means that for you, your blood pressure swings should gradually dampen.

If you do get IV saline, adding a therapeutic dose of magnesium to the IV can help a lot of your ME/CFS symptoms, as well as many POTS symptoms. Dr. Goldstein has found that adding 25 to 50 grams of ascorbic acid (Vitamin C) is very helpful in treating all these symptoms as well. If ascorbic acid is used, magnesium sulfate is recommended because ascorbic acid can cause magnesium shifts from extracellular to intracellular compartments. It's also useful to add 500 mg of calcium gluconate since ascorbic acid is a calcium chelator and could possibly lower serum calcium.

So IV saline itself is very beneficial. Adding magnesium sulfate, ascorbic acid, and calcium gluconate will increase the benefits significantly. This applies not only to your situation, but to anyone with ME/CFS or POTS.
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@zzz

Thank you sooooo much!!

I did not quite understand how the saline would work so as with all things I do not understand,I tend to put them on the back burner or even dismiss them..

This reaction is called natural human behavior Lol......
What I have always accused doctors of doing, I just did to myself,Lol.......

However while reading your post I suddenly had the Ah hah moment!

Your swing in blood pressure is caused by low blood volume explanation, turned the light bulb on in my head instantly

Thank you!!
 
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