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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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Treating my POTS naturally and with Pharmaceuticals

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I have the POTS, only my BP is on the high side instead of the low

OK
This is my treatment plan
Natural
1.)I drink at least a half gallon of Ozonated water per day..
2.)I take Saltstick Electrolyte Capsules

Pharmaceuticals
1.)Metoprolol
2)Lisinopril

Just started the Metoprolol and will be starting the Saltlick
Electrolyte Capsules when my Amazon order arrives..

Now my heart rate increases through the roof with minimal exertion
and I mean minimal..

Taking a shower it has been high as 166 bpm!
Making dinner it has been as high as 148 bpm,
even with using a stool to sit when I can!
Just stepping outside into the direct sunlight,
it has been as high as 134,bmp!
An Olympic/Professional athlete's bpm should never go over 154 bpm
who is approved by a physician!


This thread will be a diary of my outcome of treatments for POTS

Here are my poorman's tilt table tests results

Without medication:

POTS is a heart rate increase of
30 beats per minute (bpm) or more,
or over 120 bpm,
within the first 10 minutes of standing.

Sitting at rest:
6:32PM 152/91/92
Upon standing:
6:33PM 128/81/115
6:33PM 131/84/114
6:34PM 126/87/116
6:35PM 137/88/114
6:36PM 137/86/116
6:37PM 125/84/118
6:38PM 134/81/118
6:38PM 116/79/119
6:39PM 125/84/122
6:40PM 144/84/118
6:41PM 122/81/123
6:42PM 142/82/122
6:42PM 118/79/122

By this time I was getting
weak,sweating,disoriented,
felt an urgency to sit or lie down..........

With the medication Lisinopril:

Sitting at rest:
5:24PM 122/71/83




Upon standing:

5:24PM 104/74/110
5:25PM 110/76/116
5:25PM 115/79/122
5:26PM 119/80/126
5:27PM 133/79/125
5:28PM 113/83/126
5:32PM 113/82/125
5:32PM 126/79/126
5:33PM 113/79/128
5:34PM129/77/131
5:35PM 116/75/131

By this time I was getting
weak,sweating,disoriented,
felt an urgency to sit or lie down..........



I would like to hear from everyone who has POTS
to tell me their experiences of what works or not works for them
Natural and Pharmaceutical
Thank you in advance!
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Do you know what your potassium levels are? The Saltstick capsules don't have a lot of potassium.

Low potassium can cause a fast heart rate and high blood pressure. The RDA is around 4000 mg. I take 400 to 600 mg. of potassium gluconate a day. I found when doing Freddd's B12 protocol that I needed extra potassium and at one time took 1000 mg. a day and then cut back.

I know if you look up potassium you'll see a jillion warnings about high potassium. However, it's just about impossible to get too much potassium orally unless your kidneys are bad.

So low potassium might be the cause of your problems. I read once that our bodies need physical activity to have proper potassium levels, to move potassium in and out of cell as it is supposed to do. I am very inactive due to PEM - I crash quite easily and so my potassium levels are just generally low and am doing better since I started taking a potassium supplement. It would be difficult for me to get enough potassium through food as I have to watch all my calories because I gain weight at the drop of a hat because I am so inactive.

And the weak, sweating etc. sounds sort of like low potassium symptoms ...

Mary
 

Gingergrrl

Senior Member
Messages
16,171
@Tired of being sick Can you explain what the three numbers mean in each sequence? Is it sitting, standing, and then ten min later or something else?

I also take Salt Stick Tablets every day as well as extra potassium and magnesium. I started with metoprolol but ultimately switched to Atenolol. In my case though, my BP is low versus high.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im going to question if you really do have POTS. POTS is an autonomic dysfunction disorder, hence testing needs to be done comparision done with the laying readings. Maybe you have tachycardia (a heart issue rather then a autonomic regulation issue) and not POTS.

I'd like to see you test your heart rate and pulse from a stable laying reading. Then stand up (not move around at all) and take your readings a few times up to the 10min mark.

My BP monitor instructions say one should wait 2-3 mins before taking another reading as this allows the arteries to return to the condition prior to taking the reading. So you coulld be affecting your readings by doing it that often and every time you take a reading, I assume you are moving (POTS testing should be done with as little movement as possible), so it be best to only do it a few times not every minute.

I usually once I have a stable laying one, then on standing take it on the 1min mark, 5min mark and the 10min mark.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
In my case (and not sure if this is the same for @Tired of being sick) my issue began as IST (inappropriate sinus tachycardia) and then switched over to POTS. My cardiologist felt both were autonomic and along the same continuum with EBV as the initial immune system trigger. I am still having testing done to sort it all out and will see a specialist at the end of August b/c it remains confusing to me.

Also wanted to ask @Tired of being sick Do you use a shower chair for the shower? It has made a world of difference for me and incredibly helpful.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In my case (and not sure if this is the same for @Tired of being sick) my issue began as IST (inappropriate sinus tachycardia) and then switched over to POTS. My cardiologist felt both were autonomic and along the same continuum with EBV as the initial immune system trigger. I am still having testing done to sort it all out and will see a specialist at the end of August b/c it remains confusing to me.

Im curious, is IST treated the same way as POTS? same meds?
 

Gingergrrl

Senior Member
Messages
16,171
Im curious, is IST treated the same way as POTS? same meds?

From my experience there are both some similarities and differences. In both cases, the most helpful thing I was prescribed was a beta blocker b/c it lowered my heart rate and also told to drink more water and electrolytes.

For IST there is a medication called Ivabradine that seems to be approved everywhere except in the U.S. so this was not an option for me. Whereas for POTS, it is usually Florinef, increasing salt intake, and sometimes Midodrine (although this was never recommended for me.) I think for POTS they also recommend saline IV's to increase low blood volume.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Im going to question if you really do have POTS. POTS is an autonomic dysfunction disorder, hence testing needs to be done comparision done with the laying readings. Maybe you have tachycardia (a heart issue rather then a autonomic regulation issue) and not POTS.

I'd like to see you test your heart rate and pulse from a stable laying reading. Then stand up (not move around at all) and take your readings a few times up to the 10min mark.

My BP monitor instructions say one should wait 2-3 mins before taking another reading as this allows the arteries to return to the condition prior to taking the reading. So you coulld be affecting your readings by doing it that often and every time you take a reading, I assume you are moving (POTS testing should be done with as little movement as possible), so it be best to only do it a few times not every minute.

I usually once I have a stable laying one, then on standing take it on the 1min mark, 5min mark and the 10min mark.

My bp/bpm is perfectly normal while lying down

so this is one of the reasons i'm in bed most of the time

my bp is at its highest when i'm sitting..

my bpm is at its highest when standing and ridiculously high with minimal exertion..

I have all of these autonomic manifestations

●irregular breathing rythem
●shortness of breath
●intestinal irregularities
●irritable bowel syndrome
●diarrhea
●constipation
●alternating diarrhea and constipation
●abdominal cramps
●bloating
●nausea
●urinary frequency
●pain in lower abdomen
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@Tired of being sick Can you explain what the three numbers mean in each sequence? Is it sitting, standing, and then ten min later or something else?

I also take Salt Stick Tablets every day as well as extra potassium and magnesium. I started with metoprolol but ultimately switched to Atenolol. In my case though, my BP is low versus high.

Sys/Dia/bpm

1 Sitting on each

10 minutes of Standing still on each......
 

Gingergrrl

Senior Member
Messages
16,171
Sys/Dia/bpm

1 Sitting on each

10 minutes of Standing still on each......

@Tired of being sick Thank you for explaining and that makes sense now. To me, it does sound like you have POTS but what does your doctor say? I know there are people who have the tachycardia part of POTS without the low blood pressure or BP drop upon standing. There seem to be many variations of it.

Also, we get the salt stick tablets at a local bike store (not sure if this is cheaper than ordering on-line.) I always felt pathetic that people bought them for bike riding and athletic use and I needed them just to be able to stand up and walk across the room (but they help so who cares?!!)

Also, not sure if you said- do you have a shower chair? It makes a world of difference and with the chair, I can take a shower sitting without tachycardia or feeling like I am going to pass out from the heat.
 

Ninan

Senior Member
Messages
523
I take Inderal to get my pulse down (I get PEM if I go over 98 BPM) and use a monitor to make sure I stay down. For every day I manage to stay under my AT (98), my pulse goes down a little and my heart stops beating so hard. It works but I have to watch it really closely, especially in the beginning. After some time I can skip the watch if I'm not doing anything special. It really works.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
My PCP told me not to take salt tabs but what does she know

She won't even acknowledge POTS..

She's the type who will tell you, stay off of the internet!, you'll be a lot better off..

Somehow I eventually get them to prescribe what I want though,Lol.....

Get this,

I went to the ER a week ago for excessive heart rate, BPM never went under 100 in my 24 hour stay..

They gave me a drug induced stress test then said it was normal for ME!

WTF does that even mean!,lol......
 
Messages
80
My BP likes to do this also. I figured out if I take calcium, my BP will always come down. There are so many conflicting reports about calcium, I just never took it. And get very little in my diet. Guess my body just needs it. I will be taking it from now on, works great!