Does Anyone Do Saline Therapy?

[surfgirl14]

Hello. My names Kayla and I am 18 years old. I am currently seeing a pediatric cardiolgoist for my condition postrual orthostatic tachycardia syndrome. I have researched Saline Therapy and heard some good and bad things about it. My cardiologist let me try it once, but that was a special occasion. Everytime I go to the ER or when I am admitted and given saline treatments they dramatically help my symptoms. Does anyone do Saline Therapy regulary? I would like to know more about it and how to get the therapy regulary instead of having to go to the ER every time I get sick.

Thanks.

[Christy_D]

I'm curious about this as well. My son does better in the hospital when he has an IV. His doctor is willing to try it but wants to wait until we get back from the Mayo Clinic in October.

Christy

[tinkerbella]

Hi,

I've been getting it for almost 3 1/2 year @ the hospital 2 days a week. Recently the doc decided, I was not getting better and my fatigue was so bad that I switched to home infusions daily. I get 2 liters over 8 hours. Yes, it makes a big difference. I'm still bed bound, but I'm seeing little things. I'm still very dry, dry, dry... very Like they added potassium that I take orally and it make a big difference in the IV. I tend to run low. I had to start my fluids very slowly and be monitored very carefully in an infusion clinic for years before my doctor felt safe enough to let me go solo.

My veins got so abused all those years, but it was my choice. I fought as hard as I could not to have this port. So 3 1/2 years later in less than a month. I got 2 midlines. First one got infected, second was in the wrong place, then a power port. I pray that this will stay clean. I'm allergic to so many antibiotics. My doctor said, I didn't fall asleep in the office this time and I did the last. So progress is slow, I'm still so exhausted and have to nap everyday from a simple trip out.

When you go to the ER many will just give you a bolus IV and get you out as fast as they can. I don't feel those are safe. Mine were always slow to make sure I wasn't getting CHF. I only got Bolus IV when they had held food and fluids for test and the I flared in the middle of a test and needed fluids fast.

I hope you can get help soon, more and more docs are giving them. Especially on the East Coast. I wish you the best of luck and If you live out my way let me know and I can hook you up.

HUGS ~

BellaMia ~

[tinkerbella]

Welcome to this wonderful forum ~ I know you will Love it here ~

BellaMia ~

[surfgirl14]

Hey everyone thanks for the Replies back I really apprciate that.

CHRISTYD- Yea it seems like everytime I go to the ER the saline helps, and was hopeful my doctor would let me keep trying it but he has yet to let me try it out again. I hope w/ever it going on with your son will get better. Hopefully mayo clinic will be able to help a lot. I go to Duke Children's and they are also a very good place. Thanks for the reply.

Bella Mia - Thanks for all the infomration about the saline, and I do hope you are getting better. Your condition sounds a lot worse then mine, but I still have those days when I am not able to get out of bed. My POTs badly affects my ability to go to school, and I do not want to have to drop my courses. I am currently going to Duke Childrens right now to see another cardiologist up there to help me identify some more beneficial treatment options. My cardiologist down here in charlotte did let me try it out once but he is hesiitant to let me try it again. I am a little confused about that because, when I was in the hospital about 3 1/2 weeks ago the Saline worked tramindsly. I was admitted for 5 days and the whole time I was there with the IV, I had much more energy and didn't have any flar-ups. Again thanks for the reply I really appricate it.

- It is nice to know that there are other people out there , that are going threw the same. I really love this site and the people on it-

[tinkerbella]

Sometimes you just have to be your own ~ Adovacate ~ and print out things our learn here and bring them into your doctor. Many docs are just learning through us. Others don't want to bother and take the risk, so I think they want to just play it safe because they don't know enough about how POTS works.

Potsgirl93, thank you for you get well wishes and new friendship ~ You can count one me anytime for anything my friend ~Things that help are b12 shots monthly, salt overloading, fluids, fluids, fluids, sucking on ice is a good way to help keep hydrated, many small meals a day ~ compression hose, compression clothing, and I love coconut water ~ These are just a few things I'm sure you may already know them, but thought I would mention what helps me.

The type of IV treatment I get know would be perfect for you going to school. It is a 2 liter bag with a pump that you get trained to use and you get a back pack to wear. Mine is set at 250 ml over 8 hours ~ This would make it possible for someone young going to School. Meanwhile you would have to decide on a picc line, midline, or a power port to be able to get your fluids and save your veins. I have take many ideas from here back to my doctor for further discussion.

I'm sure we'll get to chat more in the future. Right now I need to bed and sleep in Heavenly sleep ~ I love you all ~ Sleep well also ~

HUGS,

LOVE to all, together we a well make it all worthwhile ~

[surfgirl14]

That is true. It's like you have to show them what you know about it, and how it will really help you. Actually you are giving me really good info thanx a lot I have never heard of b12 shots every month....what are they , and why do you get them? I am just curious I have never heard of this. The IV thing is something I have been looking into for a while and I have tried to convince him to let me try it, but he is hesitant. He let me try it once, but that was mainly because I was dehydrated. It really does help me though. Are cardiolgist aloud to perscribe the IV things, and set up the surgery to get the Picc line , port, or w/ever it may be? Thanks for the reply and all the help....much appreciated I really appreciate your support ... my friend lol Well hope you got some good sleep. Thanks soo much.

[tinkerbella]

That is true. It's like you have to show them what you know about it, and how it will really help you. Actually you are giving me really good info thanx a lot I have never heard of b12 shots every month....what are they , and why do you get them? I am just curious I have never heard of this. The IV thing is something I have been looking into for a while and I have tried to convince him to let me try it, but he is hesitant. He let me try it once, but that was mainly because I was dehydrated. It really does help me though. Are cardiolgist aloud to perscribe the IV things, and set up the surgery to get the Picc line , port, or w/ever it may be? Thanks for the reply and all the help....much appreciated I really appreciate your support ... my friend lol Well hope you got some good sleep. Thanks soo much.

Yes, your cardio can and should if he is in charge of you Pots write an order for hydration either at an infusion clinic or at home. B12 is for fatigue and for neurapathy in our arms and legs and hand and feet. Feels like pins and needles and feelings are often diminished. Primary care gives the shot, some people get pills and often they feel a surge of energy after the shot. I'm so fatigued right now it just maintains me. If you are able to go without a picc and I would for as long as you can get away with it. I made it 3 1/2 years ~ I hate this port. Hate the way it looks and hate that everythingg has to be clean, clean, clean and I still have to depend on others to shower me, and wash my hair. I thought I was going to be able to go swimming. LOL ~

Now, my legs are so swollen they look like the left one is going to burst right open. That's the one I had the biopsy on. We'll see tomorrow when the crew of nurses arrive.Lately I feel like no one listens to me. Do you see my legs and feet? I don't think the skin can streatch much bigger... Good Luck and fight for what you need ~ If you need any help just call on me ~ I'll be there with swollen legs and feet ~ x's BellaMia ~

[Frugalmama]

I had weekly IVs for the last two months of my pregnancy last year. My symptoms were getting worse, and with no meds to try, we were desperate to try anything! . I didn't see a dramatic decrease in all of my symptoms, but the fatigue and brainfog definitely lifted a little for the day or two following the IV. I also requested an IV the day after I delivered my son (I did not have one during labour), and found that it sure helped me to recover more quickly from labour.

[surfgirl14]

Bella MIa- awww gosh I am sorry to hear that. I hope your legs get better Yea my mom's friend has a port, and it doesn't seem very fun. I am sorry you have to deal with this. I do know though if I ever had to get long term IV therapy .. I would get a port and not a PICC. The PICC has more risk for infection and I do not want that. It's hard being able to fight what I want though because I am only 18 and my mom pays and takes me to my appointments. She is very supportive though, but I can't go back to my doctor to ask him about these things becuz that is another $50 co-pay for us. I would love to march myself back up there and incist that they let me start b12 shots haha but I can't. I will def. message you in I need anything, you can do the same with me. Let me knwo if you need anything. Hope you will be getting better soon. Sending good thoughts your way

[icesktr189]

My moms PICC has lasted her for 2 years! Its a record I think though.

[sandymbme]

As BellaMia said, sometimes you absolutely have to be your own advocate. Most of the doctors you see will either never have heard of POTS, or will only know of it in passing, not having any real familiarity with it. So learning as much as you can is really important. I stayed in the Charlotte area for about 8 months, (long story, was too sick to look after myself, and fiance was house hunting for us, I would not live with him in his old place) and had a rough time finding good doctors out there. So I feel your pain. I would print out articles that had been published in medical journals (there are some really helpful ones by Dr. Blair Grubb that breal down the basics, you should be able to find it on the Dinet home page, I found this by searching Google:

http://knol.google.com/k/postural-tachycardia-syndrome#

and it looks really helpful. I have been on IV hydration for over two years now, and I don't think I would be alive without it. I have celiac disease as well as POTS and EDS, and the Celiac interferes with the absorption of bile salts and hydration, so in many ways it is a horrible combination with POTS. Every time I have a celiac "attack" for lack of a better word, I get much, much sicker. The IV saline truly is a life saver. I have a port/cath, I am actually on my second. I developed too much keloid scarring and they couldn't access it anymore. I just got my new one about a month ago, and I upgraded to a power port this time, so if they have to do a CT with contrast, which I seem to need all the time, they can do it through my port and I don't have to be stuck with a huge (by my standards anyway!) needle for the contrast fluid. I LOVE my port, I get stuck once a week, when they change out the needle and clean the area and change the dressing, and that's it. They can do everything from give me IV meds to taking blood for labs through my port, so it saves me a lot of grief. IFrom the sounds of it you are a long way away from that. My doctor told me two years ago that as I had no history or evidence of kidney problems, saline therapy is one of the least invasive things we can do, and as long as my kidneys are holding up fine she sees no reason to discontinue it.

Sandy

[surfgirl14]

I really appreciate this information. You and Bella MIa have really motivated me to tell my doctor to let me try it. There is really no hurt in letting me do they IV therapy. I already have proof tht it works, and I am not going to give up. I am going to use the information you guise gave me and other things to influence him to let me do it. I am soo sorry you are having to go threw this, but am happy for you that the saline is working. I hope you continue to get better, and wish u all the best