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Saline infusions

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by anniekim, Jun 15, 2012.

  1. anniekim

    anniekim Senior Member

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    I read about people with m.e, especially those at the severe spectrum, being prescribed saline infusions. Are saline infusions prescribed to address the POTS that can so often occur in M.E or are they prescribed for other aspects of m.e as well? Many thanks in advance
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would think it would be for pots and low blood volume etc. would help if dehydrated which i think many of us could have as many of us tend to pee like a fish. Generally its harmless, iut would be worth trying as the extra blood volume may help temporarily with brain fog/circulation.

    cheers!!!
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    They are also prescribed for varieties of OI.

    Sushi
  4. anniekim

    anniekim Senior Member

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    Thanks Sushi and Heapsreal
  5. Ema

    Ema Senior Member

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    Before I got my Florinef dose high enough, I had saline infusions almost every week for a few months. They helped temporarily by increasing sodium and blood volume but were a LOT of trouble and hassle for not very long lasting benefits. I wouldn't hesitate to get one again if my electrolytes were off but I wouldn't want to rely on them for everyday wellness.
  6. anniekim

    anniekim Senior Member

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    Thanks Ema for sharing your experience. May I ask how florinef has helped you with functioning? Many thanks
  7. taniaaust1

    taniaaust1 Senior Member

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    Ema.. what dose of Florinef are you on?
    My doctor only has me on 50mcg (half a pill) and wont increase my dose.. and Im having a lot of issues with POTS still (thou about 30% improved with the Florinef and support stockings).

    As others said saline infusions are used for other things in ME too.. esp where low blood volume is involved (even orthostatic hypertension in ME can be caused by low blood volume and saline may be given). After surgery is another time where saline is sometimes given to ME/CFS patients to help them over the ordeal.

    Im wanting to try saline for both the POTS and orthostatic hypertension but unfortunately I have a doctor who seems to have given up on treating my dysautonomia stuff after Ive only improved a little after the things already tried.
  8. taniaaust1

    taniaaust1 Senior Member

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    Does anyone know of any good stuff online I can use to support my case to be allowed to try saline infusions? (seeing my doctor isnt giving me any more drugs for the POTS.. thou supportive stuff backing up taking a bigger Florinef dose would be great too).

    Has anyone got links for these things which I could take to the doctor?
  9. voner

    voner Senior Member

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    I'd also love to see the information on Florinef dosing......

    thanks!
  10. Ema

    Ema Senior Member

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    I almost hate to even write anything about how well Florinef has worked for me because I don't want to jinx it! LOL. But it seriously changed my life. I went from having to take forever to stand up because I would almost pass out to being able to pop up like normal. My blood pressure is more normal (usually 118/75 ish) whereas before it was quite low. I can be outside in the heat for much longer before starting to feel awful and lightheaded.

    My electrolyte labs are close to optimal though I do have to replace a lot of potassium and sodium. At least now I hold onto the sodium I take! I'm not dizzy anymore and don't feel that horrible muscle weakness or shaking that went along with electrolyte disturbance.

    I take one of the largest doses of Florinef I've ever heard of anyone taking and I have no idea why it is necessary. I would not recommend it to anyone without working with their doctor and getting regular labs. I hope that once I get some of these bacterial and viral conditions under better control and my immune system starts working better independently that I will be able to discontinue the meds and my adrenals will start producing aldosterone again. But in the meanwhile, I will take the symptom reduction!

    I take 2.25 tabs of Florinef or 0.225 mg. I am not sure if I need that dose because of aldosterone resistance of some sort or just because of reduced absorption in my gut. I am starting to try taking the Florinef sublingually to see if that allows me to reduce the dose. But I have normal labs, normal BP and no signs of aldosterone over-replacement in the meanwhile so I will keep at it.
  11. Ema

    Ema Senior Member

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    Unfortunately, my doctor and I ended up here more by trial and error than studies...I ended up in the hospital in March of 2011 for dehydration due to a lack of aldosterone and that was when we started the saline IVs. I had to have weekly electrolyte labs and if they came back below range for sodium then I had to go to the hospital infusion room for an IV that evening or the next day to bring my levels up.

    Tania, are you keeping track of your BP at home? Do you have any way to get regular electrolyte labs? I ordered Florinef on my own for cost reasons so I wonder if you could import it as well? But it would be crucial to get regular electrolyte labs before raising as Florinef wastes potassium and that can cause dangerous and awful symptoms as we all know.

    It really was almost an on/off switch from when the Florinef didn't seem to be doing much at a lower dose to when it started working and I started feeling better so I think it is very dose-dependent. It sucks that your doctor isn't helping you titrate it. 0.1 mg is a typical dose for most people.
  12. taniaaust1

    taniaaust1 Senior Member

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    Thou I do drink tons, I do at times show signs of dehydration (skin goes all like dehydrated in hands etc) due to all this low blood volume stuff and have also had low, out of normal range sodium level come up on one of my blood tests ... my result came back saying 135 (normal range 136-146) .

    Doctors ignored the abnormal sodium level and didnt even tell me to increase my sodium nor even tell me it had come back abnormal, I seen that result (along with a severe hypoglycemia result which I also werent told about) years later when I requested copies of all my tests. (I think the doctor I have now is better then those I did have in the past but he just tells me to use a lot of salt).

    For me.. I think its like you.. things may have to get so bad that I end up so severe that I end up in hospital in a bad way before anything more is done for me and even then.. they have a tendancy to blame other things for my POTS symptoms eg when I stuffed up my meds and overdosed, the tachycardia which was my POTS they blamed the overdose for and did put me on a drip on that occassion. My states biggest hospital emergency and the ward.. had no idea what POTS was an ignored me when I told them that was what was causing my tachycardia. ***sighs**

    Ema.. you say that 0.1mg is the typical dose for most people. When you say that are you refering to those who just have POTS but who dont have an aldosterone deficiency? (I dont have a deficiency of that so its soley just being used for POTS).

    I also have polycystic ovary syndrome (PCOS) which usually causes things like high aldosterone (but in my case my aldosterone isnt high with it and in normal range.. the hormones the PCOS changes in my case, have been affected by the ME so those PCOS abnormalities no longer show with the ME pulling my levels the other way eg my high testosterone is now low testosterone.
    Maybe its cause of 75% of those with PCOS have high aldosterone that the specialist dont feel comfortable to put the florinef up further?

    Yeah I do have a BP monitor at home.. issue is I have severe BP issues due to dysregulation of my autonomic system with it going both extremely high and low orthostatically (these issues too can be caused by low blood volume). Another thing I havent been able to get a doctor to listen to me about or test or research the issue and Ive been trying for 4-5 years to get a tilt table test ..not just then to have a paper of test result evidence of my POTS which I could show other doctors, but also so my severe BP issues are seen and paid attention too. Im esp concerned about the severe orthosatic hyPERtension

    Crazily.. Sth Australias main hospital (Royal Adelaide Hospital) no longer does tilt table testing and got rid of their table and no one can tell me where a hospital is in this state which does do tilt table tests (maybe none of them do).

    My latest specialist.. the one whos being semi helpful for the POTS is having me blood electrolytes tested after a few months to see what the Florinef dose he has me on is doing to me (I had abnormally low calicum results recently too but my last test was normal).

    I just really dont feel comfortable raising my own dose of it against his advice esp it being a med which needs to be monitored.. from what he said he wants to check my electrolites after just a few months after first starting it, (so that test is coming up soon as Ive been on the Florinef now maybe 2mths already) and then from there said I should be fine from there if the blood test is okay (so I dont think he is planning to then test again my electrolites so i wont be getting further monitored with that).

    **sighs**. maybe I should just start ignoring my POTS and go out more, so end up collapsed all over the place so others are ringing ambulances to have me taken to hospitall a lot.. maybe then I'd be more helped.

    Right now I stop others ringing an ambulance when I collapse (if I can talk still, one has been called before when I was competely out of it) and have told my carer not to ring them even if Im unconcious for several minutes (longest ive een unconcious was appearently 5mins)... .. maybe I should just say to ring whenver I collapse (I hate thou how I get treated at the darn hospitals.. and they've sent me home having to be wheelchaired out to a car before!!! with no treatment done at all while there).

    Then Im stuck in the city when kicked out of the hospital with often no way home which is 50kms away except a taxi (my carer wont drive in the city cause she's not a good driver and my boyfriend can only see me a couple of times a week). Ive been stranded after being ambulanced to hospital on several occassions.
  13. ramakentesh

    ramakentesh Senior Member

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    70% of POTS patients have low blood volume - either from hyporeninism or currently unknown causes.
  14. Ema

    Ema Senior Member

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    Are you using Celtic sea salt? Salt and water are crucial for Florinef and can also help with hypovolemia.

    I've never really picked it out. Most people that I know on Florinef have low aldosterone due to adrenal dysfunction. But I do see people on dinet forums etc with POTS that also take 0.1 of Florinef and I'm not sure if they've ever even had aldosterone tested. It is an interesting question.

    FWIW, it's pretty easy to tell when/if one becomes overreplaced on Florinef and back down the dose. Fluid retention is a huge sign.

    Can you ask for a standing order for electrolytes for some *other* reason than POTS? Like dehydration or something?

    You should obviously only do what you are comfortable with especially with Florinef, but I would think seriously about a raise approx 2 weeks prior to the electrolytes lab coming up if you are still having symptoms.

    Sorry I didn't see this message earlier as well. Sometimes I don't get a notification and I'm not sure why!

    Ema
  15. taniaaust1

    taniaaust1 Senior Member

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    My comments were in regard to what was being said before I was on the Florinef. Yeah salt is crucial when one is on Florinef so I are now that im on that..told to have a lot of salt.

    Ive been told to make sure I buy the salt with the iodine in it.

    thanks.. that is good to know.

    no not really. If i did that, they'd wonder why i was dehydrated? (and probably would end up thinking it was mental health issue). I wouldnt at all feel comfortable lying to a doctor either (Ive been treated enough like Im lying or something without doing that. Ive never lied to a doctor and arent about to start). (I had one doctor even put my excessive thirst from the POTS down to "possible mental health issue".

    that's a good idea. I wont lie but I have no quarms on doing something without a doctors permission.
  16. ramakentesh

    ramakentesh Senior Member

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    Corrections;

    Only a small subset of POTS patients have low aldosterone, yet Florinef could potentially help any patient with POTS because the increased volume status protects against syncope/presyncope.

    Most POTS are hypovolumic in absolute terms but not all of them have low aldosterone; many have normal aldosterone which itself is an odd response to reduced cerebral perfusion. Other factors can effect volume status via sodium - kidney dopamine 1 receptors when activated can push more sodium through the kidneys as an example and this is being actively investigated in POTS right now.

    Ive never need to increase my salt at all as I am hypersensitivite to florinef. Florinef alone without any increase in salt afforded me a significant improvement in three days flat. Some need to also salt load to get benefits, but not all.

    those with aldosterone deficits often also have elevated angiotensin II and 'Low Flow POTS'
  17. Ema

    Ema Senior Member

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    Celtic sea salt has iodine and other trace minerals in it that are great for us.

    Himalayan sea salt is similar to the Celtic but fluoride gives it the pinkish color.

    Refined iodized table salt is not the same and is not healthy in my opinion. I avoid it like the plague.

    From http://www.leaflady.org/salt.htm:

    "SALT REFINING PROCESS -
    According to the Diamond Crystal Salt Company table salt goes through an eight step refining process:

    1. Brine enters a series of heaters which elevate the temperature to 290 degrees under high pressure.
    2. Heat supercharged brine goes into a "graveler" filled with cobblestones to remove impurities.
    3. Pressure is lowered via a series of "flashers," cooling the brine to 226 degrees, allowing crystallization to begin.
    4. Salt crystals form in a large evaporator pan with the wet salt being automatically raked into a large well.
    5. This wet salt then goes into a centrifugal separator removing remaining brine.
    6. The salt then goes into a rotary dryer, making the salt perfectly dry.
    7. Magnetic screens are then used to separate the salt into different sizes.
    8. After screening, different sizes of salt are stored in their respective bins.

    High heat processing kills the salt; removing 82 of the 84 minerals found in sea water refines the salt, and the addition of harmful additives to prevent moisture absorption and caking adulterates the salt. Regarding this last step in the making of a "junk food," the most commonly used additives are alumino-silicate of sodium or yellow prussiate of soda. Aluminum compounds are highly toxic, having been associated with Alzheimer's Disease and other conditions. Corn sugar (dextrose) has also been a typical additive to salt to keep it free-flowing - kind of a "double whammy" - adding sugar to your salt - just what you need!

    MOTIVATION FOR SALT REFINING -
    It's not too hard to see that the processing of salt renders it a "junk food." To understand the motivation, however, one need only follow the money. The primary use of salt is not as a food additive, but for industrial purposes. Only 7% of salt manufactured goes for food; the other 93% goes to industry. Industry requires chemically pure sodium chloride for manufacture of explosives, chlorine gas, soda, fertilizers and plastics. Since refined table salt is formulated specifically for industrial and chemical usage, scant concern is given to its toxic effect on human biology.

    Of course the trace minerals originally in salt are quite valuable. Manufacturers can sell off the other 82 elements found in sea water, leaving only sodium and chloride, and make a lot of extra money. The resulting refined table salt still tastes salty, though like white sugar or white flour it is missing most of its original nutrients."

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