IV fluids, POTS & Epilepsy

[aec8857]

Hi there! New to the group here, and I have a question for anyone who uses IV fluids at home. I've been THROUGH it when it comes to different meds/treatment plans, but the only thing that honestly gets me to a point where I'm functioning well enough to be independent is after I get IV fluids at the ER. How did y'all end up with this option? Did you have to bring it up yourselves? Does someone come and set you up with the IV every time? I usually end up at the ER/urgent care/somewhere a couple of times a week and if I try and put it off it starts triggering my seizures which kick starts migraines (I won the genetic lottery, obviously). Any and all help would be so much appreciated!! I'm just about at a loss at this point...Thank you!!

[Pistol]

Hello @aec8857- welcome to the forum!!! I get IV fluids at home, I have a port and a nurse comes to change the needle once a week. I was in a similar situation as you - I also take seizures from POTS and used to be in the hospital or the ER every 6-8 weeks to get IV fluids. It is the only thing that can prevent the seizures. I used to get so bad that I had to crawl b/c if I stood up I would either faint or have a seizure, I could not find words, was extremely nauseated, my HR and BP were either too high or too low .... As soon as I got some IV fluids in me I was a changed person. My PCP and my autonomic specialist and my cardiologist were all aware of this and ordered IV fluids on an as needed basis, Then I would get them weekly at an infusion center 1 hour away but this ended up a problem b/c I needed them over several hours. I had begged my doctors for years for a port and homeinfusions but they did not want the responsibility of the possible risks ( blood clots and sepsis ). But then there were a few times when my PCP was not available and the ER docs refused fluids because they said I could drink ( they did not understand that IV fluids in POTS are more than just for dehydration ). So after that happened a few times and I had unnecessary hospitalizations for seizures and high BP my PCP finally agreed. I had a port inserted 2 years ago and get 1 l LR once to three times a week at home - and never looked back. I rarely faint anymore and only had about 5 seizures since. I do get flares and have to stay in bed at times despite the fluids but it blows over. 

If you have an understanding and informed physician on your team it may be a good idea to ask for an order for IV fluids on a regular basis, they not only can stop a flare but also can prevent one, as I am living proof of. Most homecare agencies require a permanent access to give the IV fluids at home, but infusion centers or even some urgent care clinics can start an IV and infuse fluids with a standing order. Getting a port for POTS is highly controversial in the medical community and certainly is reserved for severe or medication-refractory patients currently ( I was on all meds appropriate for my HPOTS diagnosis and still was severely disabled from the seizures and fainting ). 

I hope this helps a bit in considering what to do to get IV fluids. Yes - I had to bring it up myself and as I said - it took years to get the port approved. My sisters also need IV fluids for HPOTS regularly ( they live in Germany ) but they get the infusions in their PCP's office with a needle in the arm that gets removed after the infusion. 

Let me know if I can help or answer more questions - feel free to PM me. Good Luck!