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Magik-Aimee

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About Magik-Aimee

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    Newbie
  • Birthday 09/28/1990

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    http://www.magik-aimee.tumblr.com

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  • Gender
    Female
  • Location
    Schererville, Indiana

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  1. Yeah, I'm just sticking with normal saline for now, but I thought it was interesting.
  2. Here is the site I got a lot of my saline information from: http://potsgrrl.blogspot.com/p/in-support-of-iv-saline-therapy-for.html And in the comments, someone posted this: "I am told that Dr. Blair Grubb, who is one of the leading dysautonomia/POTS experts in the country, has come up with a "Dysautonomia Cocktail" he often prescribes to his patients. I am not sure if it makes the saline last longer in the body, but his patients seem to see improvement from it. One of his patients posted the recipe for his Dysautonomia Cocktail on a POTS patient forum I belong to. I cannot be sure this is accurate, so perhaps you may want to call Dr. Grubb to discuss this. I have heard he is very nice. -Dysautonomia Cocktail- Magnesium sulfate 2 grams Calcium chloride 1 gram Ascorbic Acid 10 grams Pyridoxine 100 milligrams Dexpanthenol 1 gram B-Complex 1 milliliter Cyanocobalamin 1000 micrograms Mix in 250 milliliters of normal saline. May be stored for 1 week in refrigerator. Must be warmed to room temperature prior to infusing. Do not microwave." I think that's the only time I've seen that. Anyone else heard of it?
  3. Hi guys! I'm Kayla, I'm 22. I just joined the site a couple of days ago, but I was diagnosed with dysautonomia (nothing more specific, but I'm fairly certain it is a combination of NCS, CFS, IBS, and possibly fibromyalgia) back in May. I had symptoms for a while before seeking treatment, but things didn't get really bad until September-October. Anyway, at the moment my symptoms are largely uncontrolled. I take atenolol to control my heart rate, midodrine to help control my hypotension, and I just started IV saline infusions last week. At the moment I'm on 1L of normal saline infused over the course of 1 hour, Once per week, as needed. So, my question is this: Do any of you guys have any experience with saline? I've been researching a lot, and from what I've read it sounds like it's most beneficial for patients to have nightly infusions, generally over the course of about 8 hours (although I'm not certain how many liters that is). My long term goal is (if it helps) to get set up with daily infusions, at home, through a cathport so I can do them myself. So, how often have any of you gotten it? How much? And what type of saline? I've also read about the "Dysautonomia Cocktail"? Any experience with that? And most of all, was it worth it? I felt pretty good after my one infusion, so I'm hopeful I can get back to semi-functioning.
  4. I don't measure, but I add salt to everything except my drinks. (For now!) I eat a disgusting amount of salt though, watermelon covered in salt, sauted mushrooms covered in salt, super salty vegetable soup...you name it. To be honest though, it doesn't seem to make any difference for me. My b/p still *****, and all of my fluid goes straight through me! (Tmi, I know, but I have to pee ALL THE TIME!!!) But I would estimate I add about 4-5 Tbs of salt to my intake each day.
  5. I just started saline last week, at the moment I'm getting 1L infused over 1 hour, Once per week, but I'm talking to my primary monday to see about increasing the frequency. I didn't feel like the one liter did very much (and I had vomiting/diarrhea all day afterwards, so I only got about 2 good hours before it was out of my system.) I've seen other people write about the "dysautonomia cocktail" but i haven't seen much about it, so I'm sort of curious to find more information on it...
  6. I've had the same issues, talking/singing/etc... The first time I passed out I was actually sitting in a parked car talking on the phone with my mom. Weird! I usually just have to shut up and wait for it to pass, lol.
  7. I really hate midodrine. I didn't have a terrible time at 2.5mg 3x a day, but they increased it to 5mg and boy oh boy has it been rough. I've been taking it since March, and I get hot flashes, chills, tingling skin and scalp...but the worst side effect I've had is my heart rate. I generally run a little tachy, but on midodrine, my pulse tends to run in the low 40's! Yikes! My sister has also had a similar reaction to midodrine. Unfortunately, if I take my atenolol without it, I tend to pass out even more than normal, so it's that or nothing I guess. >.<
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