Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Julyrose

Can you become dependent on IV saline?

Recommended Posts

I have been getting 1 to 1 and 1/2 liters of IV saline once a week since last June. To say that it has been life changing is not an exaggeration. I also take 90mg of Mestinon 3 times a day to help manage my POTS and Orthostatic Hypotension. Between these two interventions, I have better quality of life and stability. I have not been to the ER since I started, and it used to be about every 6 weeks for fainting and resultant injury and needing fluids.

My veins are incredibly fragile because of EDS, and so getting consistent peripheral IV access has been a great challenge. Two nurses tried 9 sticks collectively over the last 3 days and were unsuccessful. As a result, my prescribing doctor, my neurologist, has discontinued this line of therapy. The reason: "I have heard of patients becoming dependent on the saline" so she stopped it.  

I understand that at this point, to continue IV saline, I would need an indwelling line of some sort, be it a PICC or a Port and that the risks go up exponentially at that point. But, I have severe gastroparesis which makes it incredibly difficult for me to maintain adequate fluid intake, let alone the volume needed to keep the POTS stable. I am chronically dehydrated to the point I make lots of small kidney stones.  

Today, now several days past my normal infusion, my vitals standing for 3 minutes were 113/78, hr 166   and sitting quietly were 106/84 hr 143

My vitals last week before saline were: 87/66 hr 136 and then after saline: 93/74 hr 87.

 

The mestinon really helps, but nothing has even come close to how the saline helps me feel, or how my vitals respond. The effects only lasted for a few days, but I could count on some relief, and that was worth so much to me. I am devastated.

Share this post


Link to post
Share on other sites

So sorry.  I have not heard of patients becoming dependent on saline.  Personally I have been on regular saline for as long as a month at a time (2 to 3 times a week!).  At the infusion center I met other POTS patients and some had been coming to get infusions for months or even years (although I think off and on).  Does increasing salt intake, as well as fluids, help you?  Hopefully others with experience with longer term use can weigh in with their experiences.

Share this post


Link to post
Share on other sites

@Julyrose - no, I don't think you can get dependent on it - but you can be better on it than off. I too am getting regular infusions, at home ( I have a port ) - 1 - 3 liters a week, depending on my needs. Like you I have not been hospitalized or in ER since beginning the fluids over 1 year ago. I think it is possible that your doctor is simply afraid of continouing the fluids b/c of the apparent need to go further and insert a more permanent access. I had to convince my PCP for years to go ahead with the port and he only agreed once a hospitalist refused to give me infusions when I was admitted with autonomic seizures due to POTS.  The risk of infection and blood clots that come with a port or PICC line are real and can be serious, so the risk vs benefit is a difficult determination to make for your doctor. However - if you get this bad off the fluids keep a record of your Vital signs and symptoms since you are off the fluids and show him how bad you are without them. This may help him make up his mind.  The fact that you are unable to drink enough fluids due to gastroparesis should be an important reason FOR the fluids in your case. 

I feel for you b/c I know how sick I would be without regular fluids.  Best of luck!! PM me if you need more info. 

Share this post


Link to post
Share on other sites

It’s not likely safe enough for me to get a PICC or port due to clotting issues, so I receive my saline peripherally, too. I generally don’t get fluids unless I am crashing or already down, so my veins are staying okay. I’ve gotten fluids as often as 2.5L every other day. During that experiment, I felt as good as I can imagine...  but we also found that my IVs don’t last a week like we planned they would. Needing a new one every other day at best isn’t sustainable for me.

 

It doesn’t matter how much salt and fluid I take in by mouth - no medication or other intervention helps as much as IV fluids. That includes sequential compression devices on my legs and DDAVP. Other stuff helps, but not like the saline.

 

I hope you can get this figured out, even if you only have access to fluids for as needed use. I would surely benefit from regularly administered fluids, and I don’t do very well without them, but for me, it doesn’t seem like an option. I’m very grateful to have them when I need them.

Share this post


Link to post
Share on other sites

Agree about the method of delivery potentially being an issue long term, but this sounds like saying someone could become too dependent on oxygen for breathing. And any doctor who would base treatment on something they heard about some people would greatly concern me as well. 

Share this post


Link to post
Share on other sites

This is beyond frustrating then. I understand if she feels an indwelling line is simply not justifiable but as evidenced by the massive improvement in my vitals listed in my orrigional post, and this is my typical response, I get huge demonstratible and replicatable positive results from IV Fluids. Having known what it feels like to be more stable, it is devistating to have this improvement taken away, and know this likely will relegate me back to bed or a wheelchair most of the time. 

Share this post


Link to post
Share on other sites

@Julyrose - I got my port by nagging, presenting research and patient experiences and simply put: I did not give up asking for a port. I had my cardiologist agree with the port but my PCP had to order it. Because of the permanent access and being homebound I was approved for home health and a nurse comes once a week and changes my needle/ dressing. If your veins are giving out then this would be the next step. And it sounds like your doc does not want to go there, which needs to be respected. I hope you get somewhere. Best of luck!!!

Share this post


Link to post
Share on other sites

Update: I saw a new cardiologist yesterday. My vitas absolutely sucked when they did orthostatics at 5 minute intervals:

heartrate laying down 90, sitting 160, standing 189. 

He was not comfortable with those numbers. We went through the medication options. Myblood pressure can be erratic, but is usually low and beta blockers have been intollerable. I have a shunt because of Idiopathic Intracranial Hypertension (pseudotumor cerebri) and so volume expanders are contraindicated. We are going to add Ivabradine to the mestinon, but ultimately, he feels that my chronic dehydration from the gastroparesis makes controlling the POTS with meds alone impossible. He is going to ask interventional radiology what kind of indwelling line they think is most appropriate, but he is recommending a port as he believes I need more frequent fluids, and over longer term.

I have Hypermobile Ehlers Danlos Syndrome, and have poor wound healing that looks like classical EDS more than is typical for my subtype, so that will factor into what kind of line I can get, and heightens the immediate risk of infection. Still, This treatment is badly needed. I will just have to pray, learn all I can, and be diligent.

 

Share this post


Link to post
Share on other sites

I’ve had PIC lines, a port, and now a tunneled catheter. The PIC lines were fine, but had to be replace annually. The port I thought was going to be the answer. But because I needed to access it daily, the huber needle had to stay in place. Evan though it was changed weekly, the dressing created abit of pressure on the needle insertion point. That led to a small necrosis which necessitated the removal of the port. The tunnelled catheter was inserted 3 years ago and I have had absolutely no issues with it whatsoever.

just my experience. Personally, I would never, by choice, go back to a port.

Share this post


Link to post
Share on other sites

Thank you everyone for taking the time to reply. As you all know, this can be increadibly isolating, but this community helps remind me that I am in no way alone in this fight.

The order for the port is in, just awaiting insurance clearance before I can schedule placement. I had an endoscopy yesterday in which reminants of food I had eaton 18 hours before were still present, so more evidence of severe gastroparesis showing why I have immense trouble hydrating orally. My Gastroenterologist is also in full support of the port. She is increadible, and I completely trust her, and she feels my nausea (and pots) being so nuts is a direct result of being severely chronically dehydrated. And, once we get that sorted with a port, we may well be able to control my symptoms with medications. 

They put the fluids wide open for the endoscopy to try and pump me up a bit, so I am farther from a crisis than I was, but am still anxiously awaiting clearance for a port, and the ensuing relief.

Gentle hugs everyone.

Share this post


Link to post
Share on other sites

@Julyrose - I am so happy for you! I am a new person since getting weekly IV's through my port and since I can get them as needed as well I am no longer debilitated from a simple cold!! It may very well be that your POTS symptoms are caused by the dehydration from gastroparesis - but keep in mind that many people with POTS DEVELOP gastroparesis FROM it!

6 hours ago, Julyrose said:

And, once we get that sorted with a port, we may well be able to control my symptoms with medications. 

I wholeheartedly wish that for you!!!!!☺️

Share this post


Link to post
Share on other sites

I am scheduled for port placement on Friday with interventional radiology. I am terrified, but also filled with hope. I'll update once I'm back home and settled, assuming they are successful.  I am so dry my lips are cracked and bleeding. 

7C1E05F8-244C-45FF-80DA-2450165A6491.jpeg

Share this post


Link to post
Share on other sites

@Julyrose - don't be scared, the port placement was easy on me, and I had it done twice ( my first port had problems ). I am sure they will run fluids during the procedure, so you should be fine.  There will be some soreness afterwards but nothing too too bad ( at least it was that way for me ). I was surprised that it hurt more in my shoulder and neck on that side than at the actual port site, but I was told that is normal.  I will be thinking of you tomorrow and am looking forward for you post-op update. Best of luck!!!

Share this post


Link to post
Share on other sites

I had the port placed today. I am quite sore and bruised, but otherwise all seems well. My cardiologist is confused about how to write the hydration orders and for what frequency, so as yet, there really isnt a plan in place, but I do believe that this is a big and important first step towards consistant hydration, and better POTS control. 

Share this post


Link to post
Share on other sites

Dear @Julyrose - I am so happy for you! Thank god it went well for you! --- How often did you need Fluids before the port? I started on an as needed basis but ended up in hospital every 6-8 weeks because if I waited until I needed the fluids it was already too late. Then we did them weekly for a few weeks and stopped but I got bad as soon as we stopped them. Since the port my doc's orders are 1l LR weekly and up to 3l weekly as needed. This way I do good with the weekly ones but if I am sick or in a flare I do them every other day and this helps me to recouperate quickly, plus I no longer pass out or take seizures ( well, rarely at least ). --- since you have such bad gastroparesis I would think that you might need them several times a week -? The good thing is that with the port accessed you can hook up to them yourself. You just need to have a nurse access and deaccess the port and flush it with heparin. Other than those things I do everything myself at home.  I hope you will improve as much as I did!!!! Best wishes!!!!!

Share this post


Link to post
Share on other sites

I have read that doctors are hesitant to use saline as a long term treatment.  I don't think it's because it's addictive, it's because it isn't good for the veins as you mention - even in a person without EDS.  I think the challenge is that you can't retain fluids because of gastroparesis.    Have you looked into mediations which help retain water?

Share this post


Link to post
Share on other sites

yogini: I have a vp shunt for Idiopathic Intracranial Hypertension that is only partially functional. As a result, we cannot use volume boosting medications.  We will be careful to moniter for headache increase as we up the saline, but I am so dry, we have a ways to go before we hit a fluid load high enough to increase the pressure. In addition, volume increasing meds still depend on intake. I cannot ingest even a normal ammount of fluids, let alone enough to compensate for the venous pooling in my legs when upright. I am...complicated. Though I know my set of comorbidities are not UN common among EDS. 

 

Pistol: I was started on 1 liter saline weekly in June of last year. We had hoped to just do it temporarily to get me stable and while I was titrating up on Mestinon. Unfortunately the gastroparesis did not calm down and by fall, we upped the volume to 1.5 liters weekly. But my vitals just got worse, excluding the relief for a day or two after infusion, when before it had helped for 4ish days. Then we stopped being able to get peripheral access, partially from the EDS, but partly from how chronically dehydrated I am. Neuro stopped the saline, but refered me to a new cardiologist hoping that they would have some other ideas about meds instead. Cardio determined that until we get a handle on the dehydration, the meds are never going to be able to compensate, so he ordered the port. My labs yesterday show elevated hematocrit and hemoglobin indicating dehydration.  I wonder if I need daily infusions for a few weeks to catch up and get stable, then decrease to 3-4 times a week. 

Share this post


Link to post
Share on other sites

I know someone on this forum who cannot drink enough fluids due to stomach issues and she gets infusions via port every day. She also has a NG tube in place. I myself can drink orally but its never enough. 1 l IV fluid run over 6 hours does the trick, same for my sisters. If it is run faster its not effective.  I usually do well with fluids once a week unless I am in a flare, then we do them every other day. I would imagine that for you starting with fluids every other day might be good , you can always increase as needed. Getting too much IV fluids has its own set of problems, however since you cannot supplement orally it may be necessary. Trust your doc. 

Share this post


Link to post
Share on other sites

thanks Pistol. :) 

Its so good to hear how it has helped you and how often you run them. I am going to call cardio tomorrow and ask if we can try every other day to start, and then adjust (hopefully down) from there. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...