Lulu Posted March 1, 2006 Report Share Posted March 1, 2006 Hello, everyone, I'm a newbie here, so bear with me and my long saga I have hyperadrenergic type of POTS and NCS, have been getting along pretty well for the past year, then in January all heck started breaking loose. Fainting mulitple times daily, feeling yucky, tired all the time, can't get warm, then get too hot, and SO THIRSTY. I am drinking between 18-24 8 oz glasses (yes, that's right between 18-24 per day!) of Gatorade/water mix and am just peeing it all out. I just can't seem to stay hydrated and feeling well consistently as I had been. Beverly (NP @ Dr. Grubb's office--she is wonderful!!) recommended going to ER for IV fluids at the beginning of February to "jump start" me out of this exacerbation. It worked! And they didn't even look at me like I was nuts when I went to the ER. It was *amazing!* I just told them I was having an exacerbation of my dysautonomia and my cardiologist wanted me to have a litre of fluids. They asked questions, but not dumb ones like I was crazy, *good* questions like they wanted to learn about it. Afterward, I felt great, almost "normal" (for me, anyway) for about 2 days....then started crashing again.After another 3 weeks of rollercoastering up & down....go to work, can't finish shift...go to school (I'm an RN-to-be, knock on wood), have to nap in car....try to get up in AM, pass out on my way to turn off the alarm......I went back to the ER and got another litre. Felt good enough to get through lecture, practicum and clinical the next day (woohoo!), then crashed on the second. I'm now at Day #3, looking at 2 clinical days ahead and another long one on Monday. My symptoms don't seem to be relieved with anything else right now but the IV "infusion." I can't figure out why I'm not retaining the fluids I'm drinking (which I know should be addressed) but I've got to get through the next couple weeks. My family doctor (who is also really great and works with me and believes me and tries to learn about what I have) can't see me until next week, but has said to go back to ER in the meantime and get fluids as I need them, & have them check electrolytes and for diabetes (runs in family). I'm waiting for Dr. Grubb's office to call me back. (Could be awhile, they're so busy!)So, here's the real question: Has anybody been here before? What about a port-a-cath? (Assuming I'm gonna need fluids once or twice a week) Dr. Grubb doesn't recommend salt-loading (My BP tends to run WAY high--I take 900 mg of labatelol and 0.4-0.6 mg of Clonidine and 5 mg of Norvasc everyday just to keep my BP in the semi-normal range so I'm leery of adding salt to my diet anyway). I've been reading a lot of info in this forum and other places, and I just seem to be getting confused. (My concentration is off, too.) The thing that's driving me crazy is that when I'm good, I'm really, really good. I feel great! & I've been well maintained for over a year. Now it's like I'm re-living the nightmare of when I was first diagnosed. Why now? I can't figure it out and don't know what to do. I just need some ideas; I know y'all can't give medical advice. I'm getting freaked out and wondering what I can possibly do.I'm so glad I finally joined this forum. Must have been a HUGE brain fog that kept me away all these years. Thanks for being here and thank you to anyone who has any ideas for me.Blessed Be in Light and PeaceLulu Quote Link to comment Share on other sites More sharing options...
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