Kris4444 Posted May 25, 2016 Report Share Posted May 25, 2016 Today I started IV fluids at home with a nurse for the first time. I am doing this in the hopes that it will relieve some of my symptoms when I ride or exercise in the heat. Since starting the beta blocker my symptoms have gotten much better but I still struggle when I exercise/ride on hot days. I would do anything to be able to continue with my sport. I have lost everything else, I'm not giving up riding too. I was wondering if there are others out there with hyper pots that have a relief of symptoms from IV fluids? It took a long time to get the fluids in me (4 hours) because my bp kept spiking up really high. I do not have a picc line yet, they want to see if this is even going to help me before we do something more invasive like a picc line but I would like to hear from those of you who have one as to how you do with it and if you are able to exercise comfortably with it. It is 86 degrees here today and I'm about to head out to ride. My hope is that the hydration will keep me from getting the vertigo, goosebumps, exhaustion and other symptoms I experience in the heat. I am hoping to compete this season with my horse. Last season I could not compete due to my issues but maybe this year with the help of the beta blocker and fluids I may be able to. Fingers crossed!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 25, 2016 Report Share Posted May 25, 2016 Hoping it works. Would love to hear that you can compete again! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted May 25, 2016 Author Report Share Posted May 25, 2016 Thanks Katie. Not sure what to make of it. It turned out to only be around 82 degrees out with a storm rolling in. It was overcast but humid with a breeze. I did fine while riding, was a bit light headed for a short time when I got down. I seemed to recover more quickly and my energy level after and even now feels really good. Today probably wasn't the best test day. I'll be curious to see how I do when it's really hot. I took my first lesson with a GP trainer in over 2 years on Mother's Day. It went really well and gave me the itch to show again...we will see. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 20, 2016 Report Share Posted June 20, 2016 Hi Kris4444 How are the IV fluids working? I had two bags administered last Friday after a particularly rough week. (a trauma in the family, no sleep, no appetite, lost 4 lbs in as many days, IBS acting up). I think it did help some. I'm still exhausted but I am hopeful it will prevent a full on flare. It was warm this weekend and I did seem to manage a bit better. I am on the other end of the spectrum. The Dr instructed them to put the fluids in 'wide open' so it was an hour per bag. BP was still 97/52 after two bags. She wanted systolic of at least 110 but I knew that wasn't happening. Hope things are going well with you and your riding Riding is one of my loves as well! Kaitlyn Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted June 20, 2016 Author Report Share Posted June 20, 2016 Hi Kaitlyn, The fluids are helping me tremendously. It's amazing how terrible I feel when they have worn off (within 2-3 days). I didn't realize how exhausted I've been until I had the chance to have a few days of feeling better. This past Wednesday I had my infusion and rode within a few hours. It was 90 degrees out and I had no vertigo or symptoms! I've also noticed that my cool down time has been greatly reduced, I'm not sweating for 2 hours after riding or exercising but I do still sweat excessively. I am hoping to get them twice a week as I'd like to continue to feel well for a longer period of time and not crash like I do on the weekends. I'm sorry to hear you haven't been feeling well. I can't believe your pressure stays so low after 2 liters! I am no longer having the spike in pressure while infusing and can get a liter in in about an hour and a half now which is great. 4 hours was much too long. I have no idea why that changed but I'm glad it did because my home nurse was really getting worried that I was going to have a stroke even though I wasn't having any symptoms. She has settled down now that the bp has straightened out. It's been a month already since starting infusions! They've made such a big difference for me! Thanks for asking! -Kris Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 21, 2016 Report Share Posted June 21, 2016 Kris - I am so happy to hear that things are going so well for you! It is awesome to find ways to live your dreams in spite of ... Well, everything else! My neuro is going to set up a standing protocol in my chart so all the Drs in the system know under what conditions she wants me to gave fluids. They won't order them for maintenance. I'm not real sure what the thinking is behind it, just that if you can raise a glass to your lips they want you getting your fluids yourself. So the only way I will get the IV is if I am in a flare due to a cold or flu or crisis etc. I know there are other physicians in the area who are more generous with the fluids. If I get desperate I will check them out. the fluids did seem to help me as well. I am still really tired but did not start a flare - for that I am grateful! Happy riding! ??? Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted June 21, 2016 Author Report Share Posted June 21, 2016 I'm sorry that your doctor won't order fluids for you. It took me over a year to find a doctor who would allow me to try it. I asked my primary care doc first, then my rheumy and they both said no. It took a neurologist who specializes in POTS to order the fluids. I have thanked him profusely! I am having some problems with edema in my legs now though. Seems to happen on the weekends. This is new. I had to stop taking a diuretic now that I'm getting infusions. It's always something. I wish the way I feel after the infusions lasted for more than a couple days. I'm going to ask my doctor if we can increase to twice a day, but... My horse hurt himself. I have the vet coming Wednesday. Looks like an old injury has raised its ugly head again. I'm hoping it won't keep us from competing this season. We've been working so hard and he's the reason I'm doing the infusions. I'm pretty worried...I still have goals through all of this. It really helps me to not give in to this disease. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 22, 2016 Report Share Posted June 22, 2016 Oh no! So sorry to hear about your horse what's his name? I hope they can fix him up real quick for his sake and yours. I know sometimes it feels like it is such a tenuous hold we have on things. If one thing goes wrong it could start a spiral. Stay strong - all will be well ? I will send positive thoughts to both of you! That is concerning about the edema. One thing leads to another ... Are you elevating your legs when not riding? It's interesting you say that because I know I felt a bit 'poofy' after the infusion. Probably a dumb question but have you tried clear Pedialyte or other good rehydration drinks for in between infusions? I do know what you mean. For me I have decided to re-frame. I'm not 'sick'. This is just the experience my body is having right now. I have found one positive thing in it: it has given me the opportunity to slow down and see life in a different way than I did before. I used to be a blur of motion from the time I opened my eyes in the morning until I closed them at night. I didn't know many people, even younger than myself, who could keep up. Now I am still more. I have to be. I see more. It's an interesting vantage point ? Good luck! Update me if you feel like it! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted June 23, 2016 Author Report Share Posted June 23, 2016 Thanks. His name is Solstice but we call him Soulie. Vet came out today, was supposed to do a lameness evaluation and instead told me my horse felt warm, took his temp and said he had a fever. I'm pretty sure that he had been outside running like a wild man shortly before I brought him in and tried to tell the vet this but he insisted that he had to have an injection of antibiotics and banamine for the fever and refused to continue the workup for the lameness. The barn manager and I both feel he was running around and is not sick. Really makes me mad as I'm no longer working and don't have the money to pay for them to come out AGAIN on Monday. He is fever free this evening and acting like his normal self so I think it was a bad call by the vet. Better safe than sorry I guess. Who knows, he may be running a fever again come morning but I hope not. I do sit in my recliner when I'm not riding so my legs are elevated. I drink Gatorade between rides. I like your positive outlook. We all have to find a way to deal with what has been handed to us. I'm exhausted today, actually took a nap this afternoon before heading back out to the barn to do the temp check on my boy. I didn't get my fluids today like I normally would because the vet came out. Getting them tomorrow afternoon. Hopefully that will give me the boost I need to start feeling better. Thanks for the positive thoughts! Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 24, 2016 Report Share Posted June 24, 2016 Sorry to hear about the vet. Kind of like our tunnel vision Drs sometimes huh?! Awesome name sure hope your boy felt better today. I hope your fluids did their magic as well! I bet you are tired - the stress on top of all the rest! Thank you - it took a little time to get here but it has served me well. Trust me though - doesn't mean I don't still pout and complain lol Hang in there ? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 24, 2016 Report Share Posted June 24, 2016 Hope Soulie is ok! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted June 24, 2016 Author Report Share Posted June 24, 2016 Thanks Katie. He's got something going on with his left front, down low, fetlock or pastern. Also probably needs his right hind stifle injected. I have no idea how we ended up with the vet saying he's feverish but he's not. I'll have to wait to sort things out until Monday when the vet returns. I'm hoping the lameness is just a strain or sprain. He's been making tremendous progress, we both have. I hope we can continue. Thanks for asking about him. Hope you are well. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 24, 2016 Report Share Posted June 24, 2016 I always pray for an abscess! Totally treatable and very short lived! Lol! Keeping you and him in my good thoughts! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted June 24, 2016 Author Report Share Posted June 24, 2016 Yeah, I went there first. Had the shoer out but that wasn't the problem. Thanks for the good thoughts! Quote Link to comment Share on other sites More sharing options...
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