Your Experience With Saline Iv

[Akgirl]

I am considering asking my nuero to try iv infusion on the week of my period. I get so much worse when I am menstruating, and I have read some pretty positive things about saline. Please let me no your personal experiences. How often, how soon do you feel results ect.

[Akgirl]

Sorry guys I don't no why this posted twice . I don't how to erase it, so please disregard!!

[Stace915]

I spoke to my cardio about doing this after a bad viral infection landed me in the ER and I was amazed at how close to "normal" I felt after 2 iv bags of saline. My cardio said no. He said that there is too much risk of infection, first because anytime a potsy is in the hospital there is a risk for infection. I asked if they could give me fluids at their office and he said no. I also asked about having a port put in to make iv treatments easier and he said that added to the risk of infection, every time they use the port and open and close that connection there is another risk for infection. He did say that it was very telling that I felt so much better from the saline. He said it doesn't mean that I am not drinking enough and need to hydrate more but that my body is not retaining the sodium that it needs to. I was on Florinef and salt tabs for years but weened off both about a year ago. He suggested that I start on Florinef again but I have yet to bc it made me gain weight and even though it sounds vain, feel better or feel like **** and be thinner...at this moment I choosing not to gain weight. Please let me know what your doc says. The week before my period every month is pure ****. Good luck

[corina]

Akgirl, when this happens, and we moderators haven't seen it yet you can report the double post so one of us will delte it. It happens now and then not sure why!

[Guest mattgreen]

What is saline IV used to treat and by what mechanism does it work?

[Kellysavedbygrace]

The use of Saline IV has been a lifesaver for me. I get it either as a bail out- when I'm crashing hard and my body can't seem to kick it- or as a preventative measure before a big trip, airplane ride, big event or, as in the case last Friday, before my daughter played the lead role in 3 back to back shows and I wanted to be there to see her. On average I get one 2 ltr infusion a month. And when I travel, I make sure I know where I can go to get it and if staying anywhere for a length of time will get it preregistered so as not to have to go the ER route.

Saline IV gives me 24-48 hrs of feeling closer to normal- so you do have to evaluate if the cost is worth the benefit. Not just the financial cost but also the stress on your veins cost. I'm a hard stick and although sometimes we get lucky and the nurse can get in first time, my average is more like 3-4 attempts. So even in IV access infection is a cost that I'm willing to live with.

Physicians seem to vary a bit on the use of saline but most Dysautonomia docs will recommend it for these types of reasons.

Depending on the case, sometimes a chest port can be put in for easier veneous accesss. This however is more risky in terms of chance of infection so most docs will prescribe on a case by case basis.

There was a recent study done at Vanderbilt on the use of IV saline and it is clearly helpful in most but not all POtS pts.

I have a couple of thoughts:

1- have you considered stopping your cycle with contraceptive meds? That might be enough to help you. In my case, I was getting either anemic or polycythemic every month. I would lose so much blood and my body just couldn't cope well. Since going on the pill, which I don't particularly like, this problem no longer exists.

2. If you know IV Saline is helpful for you find another doctor who will prescribe it. If your doc questions it, bring research proving it's efficacy, or even anecdotal posts on this forum about all the patients who have found it helpful. Just type "saline IV" in the search bar of the forum. You'll get lots of info. Most docs who don't have a lot of experience treating autonomic dysfunction are not aware of the benefits of this for us.

As a side note, I thought it was the increased volume of fluid that was so helpful. Have learned that it is the huge surge of sodium that is what helps me so much. God bless.

[Kellysavedbygrace]

Matt,

Honestly even the top researchers are not exactly sure why and how it helps pts with POtS but we do know a few things:

- POtS pts sometimes struggle with hypovolemia (low blood volume). In these cases the increased fluid is thought to be helpful in raising the blood plasma level.

- also, some of us have issues getting the fluid and sodium into the cells because of all sorts of reasons- (malabsorbtion, mitochondrial dysfunction, etc) so not having to use the digestive track for getting the fluid and salt in has been thought to be helpful.

- all nervous system cells operate electrically via use of a chemical pump called the "sodium potassium pump.". Essentially the right balance of sodium and potassium helps nerves work well. And since many of us struggle in processing sodium the increased sodium volume can be helpful.

- another thought is that sodium stimulates adrenaline production, therefore increasing blood pressure. May seem counterintuitive,

especially for those of us with hyperadrenergic POtS, but the external stimuli of adrenal production helps the brain to not overproduce adrenaline (or norepinephrine.)

[khaarina]

I had the same problem. I went to my doc and told him I wanted to stop my menstration with birth control pills. He said he didn't think stopping the menstrual cycle was necessary, but that taking normal bc pills should help regulate my hormones, preventing the huge swings which triggered my POTS symptoms. He was right. I still get a period, but my POTS symptoms no longer get worse during it. Something you may want to consider before trying iv saline if you haven't already.

I have only recieved saline a couple of times since I've had POTS and that was when I went to the hospital. I didn't know I had POTS yet, they just did it because it was protocol I guess. I think it is a great help for major attacks. It helped slow down my heartrate when nothing else could at the time. If it were easy and cheap and safe I would do it every morning, because I truly feel like a dried up raisin when I wake up in the morning. Salt and water help though, it just takes a few hours for it to have any real effect.

[Guest mattgreen]

Thanks for your reply Kelly. What do you mean when you say 'crashing'?

[Stace915]

Kelly, I don't know why but I just figured when my cardio said no, based on the explanation of why he said no, that it would be no across the board from all doctors. For some reason I didn't even consider that another doc would have a different view point. When I travel I drink as much as humanly possible and still need a day to recoup when I arrive and a day to recoup when I get home. What kind of doctor is it that you see for the iv infusions? Sounds like its worth it for me to do some research and push the issue!

As far as stopping my period w birth control. I was on the pill that you only menstruate every 3 months and I saw an improvement but then I had issues with bleeding and clotting so they took me off birth control and no doctor will put me back on.

[Kellysavedbygrace]

My case is complex w "crashes" approximately every 1-3 days. We suspect my crashes have to do with my Mast Cell Activation Syndrome. They occur spontaneously a couple of times a week but can also be exacerbated by various external triggers (meds, chemical exposure, stress, heat, sun, etc.). May also have some post exertional component but the while the crashes vary in severity they always involved severe:

- brain fog

- body pain

- fatigue

- hypersensitivity (among many other symptoms- including my digestion shutting down )

During crashes I am non- functioning in bed. I cannot drive, struggle to walk, talk. Yesterday I was on a date night w my husband and shopped a little. Today I cannot speak in sentences and a short walk to the bathroom requires the energy of a marathon. Usually 2 days in bed flat on my back and I'll be able to get up again but sometimes that is not enough and an IV will bail me out. I spend about 50% of my time crashing. We suspect during the bad days the mast cells are creating a cytokine storm-like environment and then they run out of ammunition (so to speak) and then I have good days. It is a bit of a roller coaster ride.

Pushing salt and fluids is good but if you, like many of us have issues in the GI area, sometimes all the fluid in the world won't get absorbed properly getting the fluid to where it needs to go- the cells.

I've had multiple docs who specialize in Autonomic dysfunction prescribe it. After explaining to my cardio, he offered to write the script and now I usually get it through my PCP who has a nurse in his lab administer it to me via an infusion pump in their office. I call her and she usually fits me in, when I travel I try to find an IV therapy dept at a local hospital and get preauthorization. Some here even get it through home health which would be great- just couldn't make it work for me at this point. Usually if a doc along prescribe it, they just don't know or are not willing to listen. I dont go back to docs who aren't willing to learn about research I Bring to them. Itis the only way I've been able to persever through this.

[Guest mattgreen]

Thank you for taking the time to clarify that for me. I am happy you are having success with IV.

[Kris4444]

Kelly - we are considering MCAS as part of my diagnosis but my immunologist refuses to test for mast cells. I have severe flushing episodes that literally knock me out sometimes. It gets really bad when I exercise or when I am cold and then warm up. The immuno says she wouldn't treat me any differently even if I had a mast cell issue, she would continue to keep me on the same meds and treat me the same. I have to wonder if IV fluids would help me. I have never heard of that being used as therapy for MCAS.

I have many of the same triggers as you do. Yesterday I did some gardening, it was a beautiful day. I spent most of the day in bed today due to being exhausted. My GI tract shuts down as well, I have severe colonic inertia and now have mild gastroparesis. All of this started with an EBV infection, worst illness of my life. My immuno is considering IVIG becasue my IgG's are low. I'm waiting for blood work to come back. I wonder if I should ask her about IV saline?