Health Update / Learn Something! / The POTS Treatment Center / Tips & Tricks for Illness Management

Getting IV Fluids For POTS

I feel so fortunate to report I haven’t needed IV fluids in almost 2 months. I attribute this progress to learning how to control my body a bit better at The POTS Treatment Center and therefore experience nausea less frequently. This may just be to less stress in my life recently. Time will tell. However, this post is not about the treatment center and how it has helped me (or not). Not everyone can or wants to go to the treatment center, not everyone will be helped by it, and some people just want to know about IV fluids and POTS. Well, wonder no more; here I am! IV fluids often helped my POTS symptoms more than any drug ever could. Unfortunately, at the time I am writing this, there is not a ton of information out there on IV fluids for POTS when one “Googles” unless you’re ready to go wading through some forum discussions. Even then, it does not seem as though all of the questions people have are answered. As always, this post is not medical advice or me claiming what I say is fact, it is my personal medical experience. I want those of you not familiar with me to know I’ve been sick enough with POTS where I only got out of bed for minutes a day, constantly vomited, and getting enough fluids was a huge issue. My point is, I am approaching this topic from a place of understanding what it is like to barely be able to roll over in bed, let alone stay hydrated. Here we go…

Getting The Order
I have a standing order for IV fluids as needed. Getting the order was not a battle or difficult. I’d been to the hospital at least once a week for a month due to severe dehydration. Each visit entailed at least an hour in the waiting room, having to explain POTS to nurses, waiting on a doctor who is helping patients with situations much more urgent than mine, explaining to the doctor the basics of POTS and all he can do for me is give fluids, then finally, getting the fluids. The ER receptionist, who had started recognizing me when I walked through those sliding doors, enlightened me there is an easier way. She explained how if I got a standing order for fluids, I wouldn’t have to see a doctor each time I needed fluids, and, during certain hours, I wouldn’t even have to go through the ER. I visited my primary care doctor and she thought a standing order for IV fluids made perfect sense. She wrote out the standing order for fluids and basic blood panel then faxed it to the hospital. It was as easy as that! If I need them a few times 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.

Insurance
I’ve had both Blue Cross Blue Shield of IL and BAS as insurance. BCBS of IL never gave me problems about paying for the IV infusions and neither has BAS. The reason for the order for IV fluids reads something like “severe dehydration due to Postural Orthostatic Tachycardia Syndrome” and they are on an as needed basis. I also believe the order mentions vomiting. If they didn’t pay for my IV infusions, they’d be paying for regular ER visits which include IV infusions anyway and are much pricier!

Getting The Fluids
Ask your prescribing doctor if s/he knows the hospital department you’ll need to call to make an appointment when you need IV fluids. For some hospitals, appointments are made through scheduling and in others, appointments are made by directly contacting the department administering the IV fluids. If s/he does not know, call the hospital and explain you have a standing order of fluids and are wondering how you should make an appointment when the time comes. Also ask where in the hospital you should go when you arrive for your appointment. This will all save you energy and frustration when the day comes where you need to use the order.

On days where I am nauseous and cannot seem to get enough fluids, have been vomiting, or have been having a flare, I call and make an appointment. I don’t have to bother with doctors thanks to the standing order. If it is during the day, I make an appointment and go to an area of the hospital devoted to IV medicine. This is called different things in different hospitals. Ambulatory medicine, infusion room, IV therapy, and outpatient treatment are all names I’ve seen. Where I currently live, the area of the hospital I go to is called the Infusion Room and it is open weekdays until 5 and weekends until 2.  The Infusion Room has a wonderful staff to work with. They always fit me in and cheerfully tell me to “come on down.” I rarely have to wait more than 2 hours to come in, but if I do, they make sure I will make it that long. They don’t know I used to deal with a wicked witch scheduler of a nurse and, no matter how ill I am, anything less than an 8 hour wait is golden to me. When they see me, they don’t make me feel as though I am an inconvenience. They often sympathize with the fact I am so young and have to come in for IV fluids. They are curious about my condition and want to learn which really makes me feel good about the care I am receiving, but also can take a hint if I’m too sick to chat. The staff I dealt with at the hospital I went to prior to moving was not pleasant at all. When I’d call and ask for an appointment, they’d sigh. Seriously. When I came in for my appointment, they’d nag me that I needed to call a day ahead of time. Every single time I’d explain how I cannot typically predict when I will need fluids a day ahead of time which is why I have a standing order. I even asked if they’d write this on my chart. They’d just say something like, “Oh.” or “Hm.”  I silently added, “but I will try to start planning my vomiting spells at least 1 day in advance for your convenience.”  Either way, I got the IV fluids I needed, but I do have to say it is so nice to not dread the interactions with the nursing staff. If you encounter something similar, please remember it doesn’t matter what the nurses think of you. You wouldn’t have been given a standing order if you didn’t need it!

If it is at night, I have to go through the ER. Thanks to the order, the nurse can just take my vitals and start the fluids without talking to an ER doctor. I don’t even have to see an ER doctor unless I am there for something in addition to/besides fluid. It is wonderful. The downside to going through the ER is an appointment cannot be made ahead of time, so I have to sit and wait. I definitely try and plan so I can get fluids in the infusion room as it is much more convenient.

Keep in mind, if you haven’t recently been to the hospital, they will need to get all sorts of information from you prior to being able to administer IV fluids. I think it would be a wise idea to arrange a time to provide all of this information to the hospital registration office prior to your first visit. You don’t want to have to deal with all of that on a day where you’re sick enough to require IV fluids. I had to and it was no fun. Some hospitals require you to visit registration each time you come for fluids (just to confirm all info is still correct), while others allow you to go directly to the department where you get fluids. Either way, your first infusion will get under way much more quickly if your ID, insurance, contact information, and emergency information are already in the system.

How IV Fluids Help
Many people wonder when fluids help. First off, eliminating dehydration helps anyone, POTSie or not, feel better. Dehydration can, among other symptoms, cause hypotension which is already an issue for some people with POTS. Secondly, with POTS, blood is not circulating to our organs and peripheral blood vessels the way nature intended. I probably don’t need to tell you if parts of our body are not getting enough blood, this means they are not getting enough oxygen. For some, it is circulation issues alone causing this lovely symptom of POTS, but for many, there is more to it. Many have a case of hypovolemia (low blood volume) or blood pooling exasperating the issue. Fluids increase blood volume which provides more blood to get around. So even though circulation may still be poor, and even though the blood still may pool in the feet, at least there is more blood to offset these problems and the POTSie body will have an easier time. As you can imagine, our body really enjoys adequate blood supply. IV fluids have immediately noticeable effects when I get my electrolyte balance out of whack, am having stomach issues, or am having a really rough flare. It always helps at least a little with my lightheadedness and sometimes eliminates it. I don’t experience a complete elimination of symptoms, but I can typically feel some symptoms subside as my blood pressure gets under control and my blood flows a little more easily to where it needs to go.

Knowing When I Need IV Fluids
I used to have to basically be unable to move before I would think I was sick enough to justify fluids. Now I know this is crazy! Often times I can stop a downward spiral in its tracks by getting fluids and not allowing myself to get dehydrated. Think of how cruddy dehydration can make a healthy person feel. Dehydration makes POTSies feel equally as cruddy, but that is nothing compared to the effects of the resulting low blood volume on our POTSie body. If I know I’m going to have a bad nausea day, I just go get them rather than letting myself get dehydrated. Dehydration always makes me more nauseous which turns into vomiting, which turns into a disaster! Then, there is this strange feeling I cannot explain. It is not dehydration,  but it is just this all over feeling I get and I know I need fluids (oral or IV). Maybe it is the feeling of hypvolemia? Who knows! All I know, is if I feel it and if it does not go away with oral fluids, and I go and get IV fluids then rest, my POTS symptoms often stop progressing. If I don’t go after I realize oral fluids aren’t going to do the job, the symptoms keep progressing over the next day or two and I find myself lightheaded, holding on to walls to get around, unable to think straight, and really wishing I’d gone and got IV fluids at the first signs. There have been times during a flare where I don’t have “the feeling”, don’t feel dehydrated, and have had plenty of salt and oral fluids, but I’ve gone and gotten IV fluids anyway. Most of those times they didn’t help which tells me I had enough oral fluids and also I can trust myself to know when they will and will not help. Eventually you learn what it feels like when you need fluids.

Regular Infusions/PICC Lines/ports
You may be thinking, “I should schedule regular infusions so I can always be on top of my symptoms.” The doctor at Mayo Clinic discouraged scheduled infusions unless someone is incapable of consuming enough fluids for whatever reason. He said the body can become dependent on those scheduled infusions — it begins to expect them. He explained I shouldn’t avoid infusions when I feel I need them, but it is best to just have a standing order and get them as needed. The most troubling aspect of regularly scheduled infusions is the patient will more than likely end up with a PICC line or port. This increases the risk of infection. People with dysautonomia tend to already have weak immune systems. PICC lines invite easy access for pathogens to get into the body as do the regular punctures of skin required to access a port. If infusions are done at the hospital or office rather than home, there can be some pretty nasty diseases lurking around you wouldn’t want to have easy access to your blood stream unless you didn’t have much of a choice. Ports are a less risky option than PICC lines for someone who will be needing infusions regularly, but still carry risks. Here is a slide show turned PDF for more information (including pictures) on these options.

I’ve virtually “met” many people who are in a situation where a port and regularly scheduled infusions are truly their only option. For these people, the risks of a port and dependence are worth taking because they’d always be dehydrated otherwise. However, if someone has the capability to intake adequate fluids orally, it is not worth the risks. Lucky for me, I fall into the category where regularly scheduled infusions weren’t worth the risks because I can stay hydrated most days. I am not saying it is always easy for me to stay hydrated, but most days, it is possible. There have been times when I have wished I could just hook up a saline bag to a port and be done with it, but that is not a reason to risk infection and dependence.

Considerations
Have 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 surprised 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. In turn, I needed IV infusions less often.

Think about if you want to educate on dysatuonomia and POTS or not during appointments. Often, the nurses will inquire about my condition. In my experience, they’re not pushy or assessing me, they’re just curious. The nice thing about standing orders is it does not matter if the nurse understands POTS or not. You will get fluids either way, so it is up to you to decide if you want to explain or not. Whether or not my treatment depends on it, I educate as much as I can in order to raise awareness. Imagine if you were the patient of a nurse and she already knew about POTS without you explaining. It’d be magical! POTS can be difficult to explain, especially when I’m symptomatic, so I always take my favorite basic POTS journal article with me to my appointments. If they wonder about my illness beyond my basic explanation, I offer them the journal article to look over. I bet in 100% of cases, the journal article makes a lot more sense than a dizzy, nauseous sleep-deprived, brain fogged POTSie. :)

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21 thoughts on “Getting IV Fluids For POTS

  1. Pingback: Orbitotomy Update/Stitches Out Tomorrow | lethargicsmiles

  2. Just want to say that it’s been so encouraging to read some of your blog posts!

    I’ve suspected that I had POTS for a while, after my last PCP suggested it as a possible explanation for my symptoms, but I was fiiiiinally diagnosed today!

    I wish you and all the other POTSies here all the best.

    Jesse

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  3. Thanks for all the helpful information. Im 17 and have POTS and am wondering…you mention taking an antihistamine. Is that for POTS as well? I am newly diagnosed and am still learning.
    Thank you !

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  4. Hmm this is interesting except for the part where you almost discourage people from using ports. Ports do NOT invite infections in…they are under the skin and come with little risks. I’ve had one for a year with 0 issues complications or infections and have a low immune system. PICC lines or Hickman lines are open and cause much more concern for issues. Please don’t report on something you know little about.

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    • Thank you for bringing this mistake to my attention. Originally, I meant to discuss PICC lines only but misspoke and wrote port. I have corrected the sentence where I said port instead of PICC and decided to add a little info about ports. Like the blurb on the side of the page states, I do not claim to be an expert nor providing medical advice, and I am ill, so sometimes I overlook/miss things/misspeak. I do not feel I was discouraging people from getting a PICC or port, rather I was letting them know there are risks to be considered. I acknowledged in my post and I acknowledge here; sometimes the risks of PICC lines or ports are outweighed by the benefits.

      I am happy to hear you haven’t experienced any of the possible complications of a port. Infection, especially blood infection, is a risk with ports since the skin is punctured to reach it. The risk is lower than with a PICC line, but still present. I would have to disagree I am writing about something I know nothing about, but you are entitled to your opinion. My information comes from doctors at Mayo Clinic’s autonomic clinic and a world renowned geneticist experienced in EDS/POTS who do not recommend ports or PICC lines, unless a patient requires frequent IV fluids. My information also comes from my own research. I just double checked information available to patients to be sure the risks I’ve been told about and remember reading about are accurate, and they are.

      There are additional risks aside from infection that a patient would not encounter if able to get their hydration orally. For some, these risks are nothing compared to the benefits they receive from frequent infusions and receiving infusions at home. For many patients, such as myself, who do fine on oral fluids most days and just need an occasional boost of IV fluids, I maintain my position that ports or PICC lines are an unnecessary risk.

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      • ANY iv comes with risks, not just central access devices. To discourage those who get frequent and routine accessing done because of such isn’t helpful. Ports are just as safe as an IV in your hand or arm, some would even say that’s “riskier”. Obviously anyone thinking about getting a line has a very good reason for doing so and most think the positives out weigh the negative. I’m sorry to have sounded harsh but your post seemed incredibly anti ports and sounds as though anyone who gets one will get an infection. Ports are used by cancer patients, of whom there immune systems are sometimes completely compromised but doctors still recommend them and turn to them for accessing. Something to remember and think about.

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        • Obviously you sound like you do not need a line. But for those requiring frequent infusions, blood work, or treatments it’s so beneficial. A port doesn’t harm you when not accessed or in use and you would probably forget it’s there. It doesn’t sound like your doctors educated you enough about all the positives a port may bring since you are so stuck on “infection risks”. It would save your veins a lot of hardships if accessed a lot and actually is better going right to the heart. But again if you don’t NEED one then don’t get one lol. I have taken time to read the rest of your blog and it’s very nice. Seems to have a lot of very strong opinions and stances on things. Good luck on your journey.

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          • I agree for someone who needs one, it is a Godsend. I suppose my thoughts are: ports are certainly safer than IV pokes several times a week which is the alternative for many patients, ports are safer than PICC lines, ports are not high risk but also are not risk free (few things are), and patients should not be afraid to use a port, but only when necessary. There all sorts of positives for patients who need frequent infusions, but like my post and comment said, these positives aren’t outweighed by risks in a patient who only needs IV fluids roughly twice a month. I think if a doctor didn’t warn me against a port when I need IV fluids so infrequently, it would be negligent.

            I get quite a bit of e-mail from brand new patients wanting to know how to convince their doctor they need a PICC or port. When I ask questions, these new patients have come across other patients in support groups who get home infusions via a port, but often do not realize patients with ports often tried other interventions first. These patients often have just been diagnosed with POTS, are able to drink their fluids, and prior to trying any other interventions, immediately are wanting to know how to get a port for home infusions. Unless oral hydration is an issue, I think it would be smart to hold off on getting a port for a little while and try less invasive options such as exercise, sodium loading, water loading, medications, and IV fluids as needed. When that isn’t enough, when fluid retention meds aren’t tolerated/don’t work, or when oral hydration is not an option or is being thrown back up, then I think they should look into ports.

            Ultimately it is their decision. I prefer to share what I’ve done, what other patients have done (give examples of when ports were helpful or not), encourage people to connect with other patients since my experience is only one experience, provide literature on IV fluids for POTS, and let each patient decide for him/herself. I don’t think anyone takes my word as gold and they shouldn’t. We are all different.

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  5. Have you heard of a new product called NormaLyte? They are a new company based out of Louisville and it may be something you may be interested in trying.

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  6. I think what you are saying is that for POTS and for fluids ports might not be a good idea. I am talking about getting a port when receiving other medications such as chemotherapy ontop of things like fluid and blood work etc. Chemotherapy does a number on your veins, so do a lot of intravenous medications and antibiotics. I think it would be a little silly if someone had a standing order for fluids, had okay veins, but was demanding or wanting a port or line. Then I can understand exactly where you are coming from- the risk wouldn’t be worth it, and the cost as well.

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