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PLease help with SEVERE pots/dysautonomia; ANY tips appreciated

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by keenly, Dec 31, 2010.

  1. keenly

    keenly Senior Member

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    Hi everyone.

    I really need some help on this from someone who KNOWS what they are talking about PLEASE!

    I do not and WILL NOT take drugs. They DO NOT help the body!!!!!!!! I want to heal and get well; not manage symptoms.

    My issues are severe. Blood pools immedietly upon standing and my feet are very discoloured. I don't faint but my blood pressure is low and when i had my minerals checked my sodium/potassium were extremely low. My circulation is TERRIBLE and allergies effect this directly like an allergic vascullitis in the blood vessels.

    I treat myself with NO help currently(except parents who look after me; im 25).
    I know every detail of every protocol by all the CFS docs who i study daily

    my email is keenly1@aol.com
    thanks
    Paul
  2. Glynis Steele

    Glynis Steele Senior Member

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  3. leaves

    leaves Senior Member

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    Hi there
    You could try authia cream for disautonomia and pantherhine
    Pantethine and quercetin for allergies. Nettle leaf may also help for that, or probiotics.
    Good luck.
  4. jackson

    jackson

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    Usually these protocols you have studied include supplementing sodium/potassium levels with something similar to a Gatorade (salt) and coconut juice (potassium + other minerals). You can also try to use your muscle pump to increase flow while laying down...including mild leg, butt and stomach resistance exercises. This could also help strengthen your lower body tone and slightly decrease the pooling by increasing return. Support garments are also utilized in the protocols you have studied. Have any of those helped?

    I couldn't recommend any herbs since they are self prescribed drugs with more unknowns than traditional medicine when taken at therapeutic levels. Outside of that you could try an anti-inflammatory diet that is high in antioxidants.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Paul,

    When I get severe OI symptoms Pedialite (unflavored) works better than stuff like Gatorade. I glug down a whole liter and usually experience relief. My dysautonomis doc also used to leave standing orders for patients to come into an IV clinic at the hospital for IV saline--at least 2 bags. This by-passed the emergency room.

    I also take extra minerals in tabs every day.

    And don't forget compression garments.

    The methylation therapy also helped reduce my OI symptoms--no drugs here!

    Best wishes,
    Sushi
  6. tahoma

    tahoma

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    Make sure you're not around MOLD!
  7. caledonia

    caledonia

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    There seems to be a link between the adrenals and OI. Treating the adrenals may help OI. The adrenals control sodium/potassium/magnesium levels. If the adrenals aren't working right, you'll be excreting those substances, when you should be holding onto them, thus affecting blood pressure/volume.

    Magnesium (and maybe potassium for you), sea salt, and vitamin C dissolved in a glass of water 3X should be helpful, at least it is for me. This helps both OI and adrenals.

    Even just sea salt should be helpful. I carry a tiny little jar of sea salt with me when I go out, so if I'm feeling weak, I can make up a glass of salt water. It really helps me feel better immediately. Enough to make the water pleasantly salty seems to be the right amount.

    There are other things you can do for the adrenals such as adrenal glandulars, adrenal cortex extract, licorice etc.

    As we were discussing on this other thread http://forums.aboutmecfs.org/showthread.php?9275-question-for-richvank-methylation-adrenal-support there is also a link between methylation and adrenals, so treating a partial methylation block will also help the adrenals, thus helping OI.

    There are certain tests you might want to get before starting, which we discussed on the other thread.
  8. keenly

    keenly Senior Member

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    Hi yes what i was saying is there anything extra on top of what cheney, pall etc say?

    I have started taking a spoonful of crystal himilayan salt and 500mg of potassium citrate in mornings(past 2 days)

    how do i know how much of each i need and what balance? should i take more salt?
    The last time i did my mineral levels through Dr Yasko BOTH were VERY low.
  9. keenly

    keenly Senior Member

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    yes adrenal issues!
    I have an ace++(genetics) which is associted with those issues!
    I bet most pots people have ace++ genetics!

    Cheney says DON'T use adrenal glandulars tho doesn't he?

    I do have low intracellular potassium which is associated with an over dominate SYMPATHETIC nervous system.
  10. caledonia

    caledonia

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    I learned self muscle testing this past year and it has been invaluable in determing what to take and how much. I learned it from a YouTube video. The video doesn't cover amounts, but you can do it by having an amount in mind (while holding the substance) and getting a weak or or strong reaction. Then keep testing various amounts until you hit on one that tests strong.

    In addition, if you put in enough salt so it's pleasantly salty, that seems to be the right amount. In other words, if it tastes too salty, that's too much. If it doesn't seem salty enough, that's not enough. I've been taking about a teaspoon in a glass of water as a general reference for what others might be taking.

    The magnesium I also can also gauge by how well it helps my restless legs.
  11. Carrigon

    Carrigon Senior Member

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    I am much better after the following changes, but I still get boughts of it, but no where near as bad as I was.

    NO garlic, no garlic powder, no garlic flavoring in your food. Most things are laced with it, REMOVE it. Garlic will trigger POTS up to 48 hours after ingestion.

    NO nitrates in your food! Usually found in cold cuts and bacon, chili. Many frozen foods. This will do the same as the garlic, it will trigger severe POTS attacks up to 48 hours after ingestion. And if you combo it with garlic like alot of foods do, you are getting a massive double hit that will put you down.

    COLD to slightly warm showers only! The hot water or even water that is too warm will lower your blood pressure and trigger a POTS attack. You will be sick the entire day.

    SALT your food with REAL salt. Not the bleached junk from the regular store. Go to the healthfood store or order online from a healthfood store. Get real salt that has real minerals in it. Use it daily and salt your food.

    Do NOT microwave anything. If you stop microwaving your food, within six months you will see a difference. There are many reasons why. Just don't do it anymore and limit your intake of fast foods because they microwave it all.

    Try not to cook with nonstick cookware, it gives off a known toxin that can make you sick.

    Those are the best tips I can give right now. You want to raise that blood pressure because once it drops, it's hard to get it back up there again.
  12. rlc

    rlc Senior Member

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    Hi Keenly, if you have low sodium and potassium at the same time it means you have one of 30 different conditions some of which are very serious and need to be investigated quickly a list of these 30 conditions can be found here http://en.diagnosispro.com/differen...-decreased-potassium/10536_10318-153_153.html If you can find a competant doctor they should be able to work through this list in a couple of weeks and find out whats wrong and begin treatment, these lab results should not be ignored as they indicate a serious problem that has nothing to do with CFS.
    All the best! i hope you can get someone to investigate it properly and quickly.
  13. Sing

    Sing Senior Member

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    I am just learning that Small Fiber Neuropathy can cause or contribute to Orthostatic Hypotension. There is a thread on this in the Symptoms section. This can be a lot of the neurological contribution. There can also be endocrine contributions, like low adrenal functioning and hypothyroidism. Just some of what can be going on.
  14. dmholmes

    dmholmes Senior Member

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    Hi Paul, mineral balance plays a big part in my OI symptoms. When I started a good absorbable magnesium last year, my symptoms almost completely disappeared. Kind of weird at first since I was used to feeling like I would pass out every time I would stand. I didn't start taking magnesium for OI but that was a very pleasant surprise.

    I'm still researching the balance between sodium, potassium, magnesium, and calcium and trying to get the proper amounts. The Magnesium Factor by Mildred Seelig is a great resource on magnesium, with a lot of good info on minerals.
  15. taniaaust1

    taniaaust1 Senior Member

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    Seeing the blood is pooling that badly in your legs... Have you tried compression stockings?

    I dont think there is a cure out there for POTS as such, only treatments so that is all you can do. I can control my POTS to a degree by getting my fluid intake right (and watching for how long Im on my feet and by not doing two different triggering POTS factors at once eg eatting in a warm room..both eatting and warm room can trigger POTS). Know all your POTS triggers (for myself raising my arms is another trigger which in my case can make me collapse)

    I need an extremely high amount of fluids and if im on my feet doing something. I need to be drinking AT LEAST I cup of fluid every 15 mins (more if its warmer). I keep a drink with a straw in it in my hand normal the whole time Im standing or on my feet upright. I have drunk up to 28 cups in a day.. at times, just to keep my POTS in check some. (be aware you need to be drinking not just plain water but need a good sports drink or power to put in the water with the right electrolites as water intoxification which you can get from just drinking large amount of water is highly dangerous as it messes with your bodies balance of certain minerals).

    Seeing you were low on sodium.. you need to be taking more salt, being low on salt, wouldnt be helping POTS. I come up low on sodium at times too.... I highly salt everything and eat high salt things, I suppose I should maybe be taking salt pills. Have you tried salt tablets? (often one needs to be doing a combination of things at once to help POTS).
    sandgroper likes this.
  16. keenly

    keenly Senior Member

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    Hi

    I do believe it can be cured; ANYTHING CAN!

    Cheney says its a symptom of diastolic dysfunction of the heart.

    I am due to have my minerals checked soon; i suspect my potassium is dangerously low because of some issues i am having(had low potassium in past).

    The best test to see if i would need more sodium is the 24 hour urine one. I am going to mention this in the future.

    If i had the money I KNOW i could cure myself!!!!!!!
  17. SaveMe

    SaveMe *****

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    schedule a tilt table test and then...

    Increase salt intake, and try licorice. Vote my answer the best!! :)
  18. toddm1960

    toddm1960 Senior Member

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    First you need a TTT to confirm if you're dealing with dysautonomia. Second you need to find the underlying cause of it, many times treating this can lesson your OI symptoms. In my case I found the POTS first, then worked my way to a mitochondrial disease diagnosis. Good luck and keep us updated on what you find out.
    sandgroper likes this.
  19. Nielk

    Nielk

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    It sounds like you had a tilt table test done. My doctor is sending me to get one done in the hospital. Can you tell me how it was for you? My doctor said that they'll connect me to an I.V. with infusion of some medicine. Did you have the same?
  20. rwac

    rwac Senior Member

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    Have you tried taking tocotrienols ? They helped a lot when I was having bad POTS.

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