icesktr189 Posted January 13, 2012 Report Share Posted January 13, 2012 I went into the ER last night because I was passing out all day and really needed some fluids (I usually avoid doing this at all costs and havent been in a year and a half) but it was INSANE how all my symptoms disappeared after the 2 bags of saline. My ear problems went away, it was the first time I could clearly think in 2 years, and also my anxiety and depression completely went away. I always feel somewhat depressed/anxious and even angry when my POTs itsnt good and after the IV, I felt so happy and peaceful.My mom has a port for hydration therapy and I see no reason why we cant all do it. Sure there is a risk of infection, but when some of us have absolutely no quality of life anymore and cant handle meds, it should really be looked into. As soon as I get into Goodman I am going to talk to him about it. My mom got hers from Mayo Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 13, 2012 Report Share Posted January 13, 2012 WHAT??? Are you serious... ear problems went away, like GONE? Dizziness too? Is saline ...water or salt water? Glad you feel better. This is shocking to me. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 Yes!! GONE after two bags.. no dizziness or anything. I was able to watch tv and not be dizzy or not able to focus! It was just saline I think! Of course I am dizzy again this morning as I am sure I have peed it all out by now lol Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 oh saline is salt with water... but I did notice that even after two bags, I was stilll thirsty. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 Is that because IV goes directly into the tissues and vessels that it always works so well? I have wondered about this also....no matter how much I drink it never matches getting IV fluids....so why is that? one Dr mentioned cellular dehydration which cannot be treated through oral consumption of fluids....mmmmm..... sorry for the trip to ER Dani! I hate going there too!Bren Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 I totally know what you mean about drinking water vs IV hydration... they definently are not the same in terms of how well IV hydrates you. I can drink water all day and it wont compare to even one bag of saline IV. I can just imagine with 1 liter a day of fluids from IV and some meds that we would all be better off LOLThe part that usually stops me is the completely unnessary tests they want to do. I had my 7th chest x ray last night even though I kept telling the doctor that there was no need because chest pain is common with this. I also LOVE the look on their faces when I try to explain POTS and then have to explain it to the 7 other people that want to know. They all give a blank look back and its just annoying wasting your breathe haha Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Which hospital do you go to Dani? I had the same sort of response when I went to Banner Good Sam. But, I got a really good cardio doc out of the visit. Glad it helped you. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 I went to Banner Desert.. I was suprised it was only a three hour wait.. usually its 7! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 13, 2012 Report Share Posted January 13, 2012 Glad you feel better!I had a great experience last time I went to an ER for the same reason (2 yrs ago). They understood immediately and provided me with saline and like you, poof, my symptoms were hugely improved. I don't understand why forcing fluids does not have nearly the same effect. However I do think it helps resolve any electrolyte imbalance. Oh they also tested my electrolytes and my K+ was slightly low (which happens whenever I have a relapse). So they gave me potassium supplements.It's worth it when you feel that lousy to get help. I wish the ER wasn't the place we had to go for something so simple, and also it is not life-threatening, so I hate to be there for that reason too... Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 I know I always feel bad when I go in for POTS reasons because I feel like its taking away from another patient. However, at the time I have no cardiologist or neuro until I get approved into Mayo or else I would stick it out until an appt. like I always do... I wish we could just to to an infusion center or something LOL I even tell them I dont want testing done just IV fluids, but of course that never happens. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 I'm wondering if we could have a standing RX for IV's - I think I'll ask about it. I wish I could've had one this week - I do believe I would have felt better. When I did the ER visit last - just one bag made a difference. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 Yeah I am def. going to ask about one because I dont want to keep making those trips... they said I wasnt dehydrated, but I still felt very thirsty after 2 liters. I can tell its completely out of my system because I am having a terrible POTS day right now... this flair is never ending for some reason. I thought the cooler weather would have helped. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 Hugs Dani!!! I keep having flares too lately....2 days okay and then 3 days in bed...not sure why....I just cant seem to get on top of this illness right now Bren Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Yes having a bad time time of it myself. It won't be long and it will be horribly hot here again. I plan to get a cooling vest this year from that place I got us the discount on. They will give us a 10% discount and they are cheaper to start with than other places I checked. Not looking forward to the heat - but can't wait to get back in my swimming pool.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 13, 2012 Report Share Posted January 13, 2012 OK there's a clue here?? Why would this help - would salt water running through veins pump up blood volume? Could it be hypovolemia after all or could there be other explanations? And why would it help the ears!? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 I could literally feel blood go back in my head... it was so nice! LOL after 2 years of not having it in there and all of a sudden in 45 mins feeling it is crazy. I can tell I have allergy problems (even after the IV my ears and sinues were still a bit stuff) but no dizziness or whooshing or any other crazy symptoms. I almost felt like a human being again.I dont know exactly why, but I think it raises up blood volume... maybe actually getting blood to the ears again?And thank you everyone! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 Also everything regulated itself... I was freezing before and after I had a normal body temp... no cold hands or feet (just where the IV was placed), no adrenaline problems, my vision focused again and I was actually able to feel truley happy again. I was watching tv with my fiance AND paying attention wihout having to refocus my eyes the entire time. Now its just depressing because I am back at square one, but it was a nice break. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 I wonder if it's because it thins the blood. It would increase blood volume - It could be a combination of both. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 13, 2012 Report Share Posted January 13, 2012 Increased fluids and circulation helps all our symptoms. Wish my bladder could tolerate more...I have bladder spasms, if I drink too much. Maybe that is why I felt so good when I was pregnant years ago?! Hadn't thought of that before. Thanks for all the brainstorming. I love this site Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 13, 2012 Report Share Posted January 13, 2012 Dani - I know it's depressing to lose that feeling, but at least now you know you CAN feel normal again. There has to be a way to translate this into everyday life.Issie- I wondered about that... how does it thin the blood? I remember something about heparin being used somehow with IVs? Quote Link to comment Share on other sites More sharing options...
jangle Posted January 13, 2012 Report Share Posted January 13, 2012 Dani have you tried Florinef? It's helped my lightheadedness as well and I think by increasing my blood volume similar to what saline would do. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 Yes, was just reading about hypovolumia and it says that salt is the key to the dehydration issue. But, what florinef does is help the kidneys retain salt- but it is synthetic aldosterone - so must keep in mind that it could, potentially, affect long term adrenal function. It will lower the bodies natural aldosterone production because it's being artificially supplied. Whether or not the body would re-start production upon withdrawal of the support - I don't know. Haven't read up on that in a while.Issie Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Author Report Share Posted January 13, 2012 Oh yes I tried florinef twice... once about 4 years ago and then a year after that and both times I got severe migraines and felt like I had the flu. I think at this point I need to do hydration at least a couple days a week but its so hard finding a doctor to do it Quote Link to comment Share on other sites More sharing options...
rdl Posted January 14, 2012 Report Share Posted January 14, 2012 my 22 yo daughter also gets really dehydrated. there is a great infusion center where we live that her neurologist sent her to for infusion of meds to abort migraines. Recently we finally asked for an order for fluids and she wrote it. She has had 2 bags of fluids twice and it did help. Dani - does your mother have POTS also? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 14, 2012 Author Report Share Posted January 14, 2012 my 22 yo daughter also gets really dehydrated. there is a great infusion center where we live that her neurologist sent her to for infusion of meds to abort migraines. Recently we finally asked for an order for fluids and she wrote it. She has had 2 bags of fluids twice and it did help. Dani - does your mother have POTS also? Yes my mom was just diagnosed this year... who wrote the prescription for her?? I dont have a cardiologist or a neuro right at the momentThanks! Quote Link to comment Share on other sites More sharing options...
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