24 hr IV fluids vs bolus

[Pistol]

Hi - I am hoping to find someone who needs more than 1 bag of IV fluids to get better with a flare-up of POTS. When I get bad with POTS symptoms and start passing out I usually get a IV bolus at our local hospital as an Outpatient. I have a standing order for this. However sometimes - it depends on the trigger that caused the flare - my BP and HR go up so much and I can no longer stand up or even sit without syncope or seizures. Then my PCP puts me in the hospital over night and I receive 3-4 liters and between the fluids and the rest I improve greatly and it lasts, its like as if the longer time of infusions breaks the dysfunctional response, my BP goes down, I stop peeing as much, dizziness, palpitations and CP go away. After just 1 bag I am often just good for a day (if that) and after 3 bags I can be good for weeks. Does anybodu else experience this? Many of you report getting fluids but I am hoping to find out if other POTsies also require several bags? Any response would be appreciated - Thanks!

[RecipeForDisaster]

I have had times when a liter didn't do much good but I didn't have the guts to add another whole one. I have run in another 500mL bag which helped enough but not to a great extent... I was lucky to get the orders and supplies for 1L! I'd love to try more, and it would be so great to get more than a couple of days' worth of improvement per IV stick...

 

i run hypotensive, though. When I ran in that extra half liter, I hadn't really had any improvement in my BP after the liter.

[Roxy]

I get 1 1/2-2 bags of fluid 2 times a week it has been a life saver, I’m not saying all symptoms go away but I don’t feel like I am a dried up raisin ready to kiss the floor. 

[swish mum]

I'd like to ask how old you were  when your Drs started giving you standing orders for IV saline replacement. My daughter is 14 and has been diagnosed for 3 years. Since she has undergone hormonal changes and the levels have increased she has become much worse. Suffering pre-syncope and not getting to school much despite being a serious soccer player. I would like to ask her specialist whether we could try this. She has POTS with hypotension and gets very nauseous light headed, blurred vision, chronic fatigue, brain fog etc. Since last December she has been miserable where as prior to that she was managing school and sport with midodrine and ondansetron for nausea and melatonin for sleeping. Now her sleeping is poor as well. Of course I am worried about her schooling and to see her happy again. It breaks my heart. Also has anyone had a portacath inserted to have IV saline via battery operated pump in a backpack that runs continuously?

PS She started the mini pill end of December and we are still waiting for the 3 months to come up for it to truly be effective. Any comments on the effectiveness of that would be appreciated.

[Pistol]

I just had this discussion with my PCP about the porta cath. I think it would be very good for me because instead of driving 1 hour to the hospital to receive IV fluids I could have them at home. However - he is very much against the cath because of not only the risks of bloodclots and infection of the port but also because in my case he feels I need to be monitored in the hospital when I get bad because I get so unstable that I can't walk at all due to syncope and seizures from the POTS. 

From what you write about your daughter - it sounds as though she very well might benefit from fluids. I - as well as most POTSies - do so much better everytime I get them. The orthostatic intolerance completely goes away after them for a while. It would be good to ask her doctor about them. I wish you both all the best.

[RecipeForDisaster]

I was 37, LOL. I have not been treated very thoroughly, had to work for every benefit I got, and had had to suck it up. I still don't have a diagnosis so that isn't now helping. I didn't get these issues until my 20s, at least not badly. I did pass out as a kid and may have considered the other symptoms normal. 

 

I have a hereditary tendency to too much clotting, and have a rotten immune system, so I don't want a PICC or port even though it would be much more convenient. 

 

I am glad to have ondansetron for nausea at times. Fluids help nausea a lot when it's from low BP in my experience. I usually get hungry towards the end of the bag. I hope your daughter does well!

[Giftbearer]

When I was hospitalized 2 years ago for these symptoms the inpatient doctor recommended that I have continuous infusion because it helped alot and when he had stopped it to see what would happen my symptoms got worse again so he then put me on it continuously, but he failed to document what he told me verbally and no order was written when I went home. I live in the "burmuda triangle" which is Georgia so I have still been trying to get a doctor to write an order, to no avail. I just had to go on more oral meds for Mast Cell Activation Disorder last week and at this point am starting to gag on my pills, so this is about all I can tolerate taking by mouth. I drink icewater all day and through the night when I wake up horribly thirsty. In the morning it tastes like I have a mouthful of salt as if all the salt in my body is migrating to my mouth. Drinking lots of water just isn't cutting it.

A friend in one of the groups who is a former Paramedic suggested that I just get the supplies and do it on myself, but I don't have the guts to do that. I'd probably get an air bubble in it and accidentally kill myself. I've never given a shot much less started an IV. Starting one from scratch is alot different than just hooking up a bag if a port or other device is already there. I could probably learn how to do that with some help over time but I really would rather have home healthcare or an infusion center install it (if in the arm, and I believe a port must be done in an outpatient surgical center).

I wish my GP would write the order so it can be done safely and professionally. I hear about people now and then whose GP will do that but I've never met one who would. All the doctors here in my area seem afraid to even mess with this treatment option. They seem to view it as a last resort and are more worried about it than all the side-effects of the pharmaceutical drugs. Seems kind of backwards when we're basically talking about salt water versus drugs. To me this is more natural than medications.

[Giftbearer]

Oh I forgot to mention it took about 4 days of continuous for symptoms to start improving.

[RecipeForDisaster]

I totally agree and if you show up at an ER hypotensive one of the first things they will do is give you IV fluids. It's absurd that doctors are so afraid of it for outpatients.

 

It's pretty hard to start an IV on yourself even just because of having enough hands. I had a professional license to do so and taught others to for many years. There could definitely be complications from lack of experience. 

 

I can't have a port (yes that's a minor surgical procedure) or PICC line, so I just keep getting new peripheral IVs. I am sure I would do well on continuous, but unless I stay in bed, it's not practical.