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Treating my POTS naturally and with Pharmaceuticals

Discussion in 'General ME/CFS Discussion' started by Tired of being sick, Jul 31, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    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!
     
    golden likes this.
  2. Mary

    Mary Senior Member

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    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
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @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.
     
  4. taniaaust1

    taniaaust1

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    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: Jul 31, 2014
    Tired of being sick likes this.
  5. Gingergrrl

    Gingergrrl Community Support Volunteer

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    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.
     
  6. taniaaust1

    taniaaust1

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    Sth Australia
    Im curious, is IST treated the same way as POTS? same meds?
     
  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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    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.
     
  8. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
    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
     
  9. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
    Sys/Dia/bpm

    1 Sitting on each

    10 minutes of Standing still on each......
     
    Gingergrrl likes this.
  10. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
    @Mary

    My potassium is normal

    My b-12 is normal since taking 2500 per day
    D3 2500 per day as well..

    my magnesium is low
    it will be coming with my saltlick shipment as well
     
  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @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.
     
    Tired of being sick likes this.
  12. Tired of being sick

    Tired of being sick Senior Member

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    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.
     
  13. Ninan

    Ninan Senior Member

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    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 and Sushi like this.
  14. taniaaust1

    taniaaust1

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    yeah OI issues then. I took another look and it does look like you do have POTS.
    best luck with treating it.
     
    Tired of being sick likes this.
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    How many Saltlick tabs do you buy? And you pay how much for that?

    GG
     
  16. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
    bottle of 100 capsules for $19.95
     
  17. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
  18. Tired of being sick

    Tired of being sick Senior Member

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    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......
     
  19. Tired of being sick

    Tired of being sick Senior Member

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    I am experiencing a rare side effect of this metoprolol.......

    My already Myalgia ,stiffness,pain of my entire Musculoskeletal system
    is becoming unbearable!!
     
  20. alwayshopeful

    alwayshopeful

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    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!
     
    Tired of being sick likes this.

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