Iv Saline Therapy For Dysautonomia: Questions!!

[Magik-Aimee]

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.

[Lethargic Smiles]

The doctors as Mayo Clinic discouraged scheduled infusions (unless someone literally is incapable of consuming enough fluids for whatever reason) because they said the body can become dependent. Also, daily infusions would more than likely result in a PICC line which increases the risk of infection. While in some cases this risk is worth the pay off, it isn't worth the risk if someone can get enough fluids orally.

I have a standing order for fluids as needed from my PCP. On days where I am nauseous and cannot get enough fluids, have been vomitting, or just have been having a flare, I call and get an appointment to get fluids at the hospital. I don't have to bother with doctors thanks to the standing order. If I need them twice in one week, that is fine. If I go a month without them, that is fine too. I just go by what my body is telling me. The reason for the order reads as "severe dehydration due to Postrual Orthostatic Tachycardia Syndrome". If it is during the day, I make an appointment and go to an area of the hospital devoted to IV medicine. If it is at night, I go through the ER. The nurse can just take my vitals and start the fluids without talking to an ER doctor since I have standing order. I don't even have to see an ER doctor unless I was there for something in addition to/besides fluid. It is wonderful. Fluids definitely help me when I get my sodum/fluid ratio out of whack, am having stomach issues, or am having a really rough flare. There have been times during a flare where I've gone and gotten them and they didn't help which tells me I had enough oral fluids.

Have you had a 24 hour urine collection? I used to think I didn't properly hold on to fluids. It turns out this was because I wasn't consuming enough sodium (this suprised me) and all the water I was drinking wash washing away the sodium I did consume. Without enough sodium, my body couldn't hold on to the water. Once I adjusted my sodium intake, I found I held on to my water and felt dehydrated way less often.

[tinkerbella]

I spent many years going to an infusion clinic first for one day, then two days, then three days. Slowly working up the fluids,I wanted it to go in faster... but was told it was slow so I wouldn't go into congestive heart failure. It went in very slowly over many hours and I would spend the whole day at the clinic. After building up to 2 ltrs. three times a week, I would be exhausted from my trips back and for the to the hospital and I was also losing venous access. Years later, I had 2 picc lines put in, as one got infected. I started daily 2 ltr. home infusion therapy over 12 hours. Soon I needed a port put in and we added 2 ltr bag day over 12 hours and 500 mg bag for night over 10 hours. I also get potassium in each of my bags rather than the oral form.

I have to add that I have the difficult form of POTS where many meds do not work well. I also notice a big difference between drinking and getting the fluids by iv. I'm also severely dehydrated. Should a bag break and I have to drink I lose my voice and I look dehydrated. When I'm disconnected from my fluids, I start to get all Potsy...

It's not fun being attached to an iv all day and night. The day bag is so heavy which flares up the fibro. It can hang on your wheelchair, but twisting and turning to get to it also plays havoc on your body. You need to know where all the bathrooms are when you go when connected.

Remember to use hand sanitizer wherever you go, it will be your new friend... Good Luck to all of us on IV Hydration ; ) May we always stay infection free.

[dmjl27]

I had a picc line and had to receive in-home Saline infusions. (unless it works miracles, I wouldn't recommend this for many reasons....including hassle, home-health costs, and risk of infection)---though I've had 6 picc lines, and never had a problem yet, but I'm very involved with the nurse care being overly cautious.

I drink like a FISH, but due to severe dyapharisis, I could not keep up enough fluid. Also, the body did respond differently to drinking vs infusion. I had it twice a week. I would need 2-3L over the course of 8 hours. (that's an awful lot, but it was for my individual needs--everyone is different and knowing your salt and Metabolic panel numbers before and after are important. Not having to run to the ER to get fluids is a plus, too.

For me, in the beginning, they helped tremendously. I would have 2-3 decent days after an infusion. It was better than 'more pills' and worked like a charm. (I couldn't leave the house, or I would have chosen to go get an IV via the outpatient clinic...any day!) Eventually, the benefit no longer was great enough to justify the whole process. Remember, you cannot shower with a picc line unless you do some pretty crazy wrapping. No swimming, and you have to have dressing changed weekly, and the chance of it blocking off. (Plus, you have to flush it daily) After 8 months, I had had ENOUGH since I would no longer have any good days. However, if the benefit had been great, I would have continued. It really depends on how much you, personally, notice a benefit. Doctors are not real keen of letting you risk a serious infection, unless the benefit is great.

I wish you all the best on your decision!!!!!