hockeykid Posted September 17, 2005 Report Share Posted September 17, 2005 Hi! I am completely flat on my back 24/7 right now and haven't been able to find any medication that makes the bad feeling when I get up and the horrible fatigue go away. I am desparate for even a few hours of feeling even slightly normal so that I can go out and feel half-way decent doing it. No meds seem to be working so I am considering an IV. I have heard many things about how IVs help some people but I was just wondering what your experiences were with them and how much they helped, or didn't help you. Thanks. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted September 17, 2005 Report Share Posted September 17, 2005 HI..well I have had mostly good experiences with having an IV saline..Generally speaking what works for me the best is if they give me a bag of saline.. opened so that it is running kinda fast.. and also Oxygen.. between the 2..I will start to feel allright... the O2.. really helps with the floaters that I get.. and all those visual disturbances too.. and dizzy potsy headed feeling that I generally have all the time..The IV generally helps me function from a few hours at atime to about 1 full day... and I generally feel half way human.. which is great!!I HIGHLY recommned IV's!!So I think that if you can find doc to help you with IV's it would be a great thing to do to help combat dehydration.. and other problmes..good luck Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 17, 2005 Report Share Posted September 17, 2005 I'm still trying IV's at home on a more regular basis to see if I get improvement. I've heard so many people say it really helped them so I'm a little disappointed that to date, I'm not getting more relief with it. I certainly would not discourage you from trying it though. So far, it seems when I am having a crash I respond really well and get relief from the IV but if I'm having a routine, run-of-the-mill "I don't feel well day" then they don't seem to help for more than 1-2 hours. I think it's worth you trying if you are able to! Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted September 17, 2005 Report Share Posted September 17, 2005 When I get mine its usually 3-4 bags at a time. Then I'm good to go for a while. I also eat and drink when geting it. I know I am getting hydrated when I have to pee. Miriam Quote Link to comment Share on other sites More sharing options...
steph37822 Posted September 17, 2005 Report Share Posted September 17, 2005 oops Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 17, 2005 Report Share Posted September 17, 2005 hi - sorry that you're having such a rough time these days i've never received IVs on a regularly scheduled basis but they have helped me immensely at times when i've been "crashed" & i agree with steph that compared to a lot of meds out there it's a more benign thing to try. here are some links to previous discussions that you might want to peruse:http://dinet.ipbhost.com/index.php?showtopic=3217http://dinet.ipbhost.com/index.php?showtopic=2805&hl=ivhttp://dinet.ipbhost.com/index.php?showtopic=2535&hl=ivhttp://dinet.ipbhost.com/index.php?showtopic=1366&hl=http://dinet.ipbhost.com/index.php?showtopic=1236&hl=http://dinet.ipbhost.com/index.php?showtopic=769&hl=http://dinet.ipbhost.com/index.php?showtopic=515&hl=hope this helps, melissa Quote Link to comment Share on other sites More sharing options...
RaeJae Posted September 17, 2005 Report Share Posted September 17, 2005 I have used IV fluids especially before I travel and it does help. One thing to keep in mind is that there are different types of IV fluid. Make sure it has plenty of sodium, so you don't just pee the fluid out. It doesn't do any good unless you retain it.Good luck!! Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted September 17, 2005 Report Share Posted September 17, 2005 When I am in really bad shape and go to the er they call my cardiologist and he always has them give me IV saline. I can feel a difference almost immediately. I still feel rundown and weak for a few days, but I definately think that it helps. Quote Link to comment Share on other sites More sharing options...
pamela Posted September 17, 2005 Report Share Posted September 17, 2005 After my diagnosis I saw my Primary care ohys who is also a internist. When he was looking through his meds online to treat my condition he laughed at the Saline IV and said tha would be to inconvienant. Well, I think it would be more convienant then having to go to the ER, Stay in the hospital, be monitored, wear a holter, or ending up on the floor. After trying this methyphenadate and feeling its sde affects,the nadolol , florinef etc.. if buliding the blood volume be IV solutions is a whole lot easier than all of the side effects of the above meds. Besides when you drink fluids they have to go through out digestive system before entering the blood stream and our systems are so screwed up that adding fluid directly seems elementary. Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 17, 2005 Report Share Posted September 17, 2005 Hi,I get IVs at the ER when I am in a deep POTS crash and it's the only thing that stops the adrenaline rush. Quote Link to comment Share on other sites More sharing options...
hockeykid Posted September 19, 2005 Author Report Share Posted September 19, 2005 Thanks for all the replies! I am almost positive that I am going to get one next time I see my doc. I am really hoping and praying that it is going to work as well as it does for most of you! Thanks! Quote Link to comment Share on other sites More sharing options...
leah1321 Posted September 19, 2005 Report Share Posted September 19, 2005 Best thing ever! I wish I could get them regularly as the positive effects only last a few days but those days are great! However, my insurance will not let me do it unless they can document that I am having an emergent problem. D'oh. They fix most of my problems, including some migraines. I like the oxygen thing too. Hope it helps you. Try the new gatorade endurance, it has double the sodium and hopefully you will get regular IVs soon (I will keep my fingers crossed).Leah Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted September 19, 2005 Report Share Posted September 19, 2005 I have been doing home Iv saline for about a year now. That have been a lifesaver for me!I ususally use them when I have a bug of some sort and have also used it when I was in a slump... It has kept me out of the hospital and ER more times than I can count......It also helps my body to get through the hard tome much easier...I would definetly try it. I hope you feel better very soon Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted September 19, 2005 Report Share Posted September 19, 2005 I have gotten many saline drips over the years. I have a standing order from my doctor where I can walk into my ER anytime and they are supposed to give me the treatment. My doctor also does it in his office (he says it's less stressful for me than having to deal with the ER doctors).I get several bags of warm saline in me at a very fast rate. I usually don't have to pee until many, many hours of bags going into me... I do get dehydrated very easily and very often. The saline really helps, it seems to give me super energy for about 2-3 days and then I crash again, unfortunately. But it might be better for me to not USE that energy up and just take it easy after the IV drips.. then maybe I wouldn't crash afterwards. Even though IV's are unpleasant (just the needle thing) they really do help the body and are pretty natural- as opposed to trying meds or things like that. Clean saline can't really hurt you, as far as I know. It's worth a shot! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 20, 2005 Report Share Posted September 20, 2005 Rachel,How do you get them to give it to you warm?? I think one part of the problem for me is that the bags are soooo cold and when they do it at 1000 ccs per hour, it's just such a shock to my system. I am sooo cold and uncomfortable! Also, I think it's great you have a standing order, b/c I haven't been able to get that either! But, I will ask again!Sorry I haven't emailed you back yet! I owe ya!Emily Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 20, 2005 Report Share Posted September 20, 2005 oooooooo....i want them warm too! i never even thought about that, but i was FREEZING yesterday, even with layers on & blankets, when i got 2 bags pumped into me at urgent care. it was still definitely better than how i was doing before getting "pumped up" (b/c of icky GI stuff haven't been able to keep enough fluids in the past few days), but it would have been SO much nicer to have it warm. i'm also working on a more regular set-up as i generally refuse to voluntarily go to an ER & the closest urgent care to my new place that does IVs is almost a half hour away. gggggrrrrrrrr. i miss baltimore (or at least the proximity of it's urgent cares!).i hope things get set up for you soon hockeykid & that getting "pumped up" does your body good! melissa Quote Link to comment Share on other sites More sharing options...
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